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Amazing

25/10/2017/in English, Updates, Work /door garmt

Aerosmith, Get a Grip, 1993

From: Garmt@Accenture
Sent: October, 2017 3:46 AM
To: EveryoneIknow@Accenture
Subject: I’m finally leaving Accenture

Hello,

Like so many others, it’s time for me to send you a note that I’m off to a different place. Like some leavers, I have no idea where I’ll go next. We simply don’t know what comes after death. Science has little data on this particular topic! Anyway, you have guessed by now that I meant it when I said I would work for this company for the rest of my life.

I came to learn. I viewed it a bit like a stint in the corporate army, where I would be properly trained for a few years, pass or fail the exam of becoming MD and thus find out what I was really worth.

It didn’t turn out that way. Instead of a corporate army I found a home, the first job after ten years with three previous employers, where I could just be myself. You can’t imagine the feeling of freedom I found. And yes, I got to learn everything I wanted. I even once got to screw up an important project without getting fired (sorry KPN). The exam I had expected came in a different form. Instead of playing the promotion roulette, Accenture gave me total freedom and the whole company to throw at the disease that ate me alive. I think that challenge, of what to do with that freedom and the whole company, was an exam. I think I passed.

You know you all have the same challenge, right? Your degree of freedom may be different, but that’s a mere detail.

Time to get sappy. Colleagues are not like family. I can quit being your co-worker but I can’t quite quit from my siblings or parents. Yet, at times we spend more time with our project team than with our spouse (said Nick Cave to bandmate Warren Ellis, `I’ve had more meals with you than my wife´). I was closer to some of you than someone who just shares my last name. We shared passion, commitment, extra hours and much more. Sometimes we shared love, for Accenture’s IT Operating Model (ITOM), I think, or for business development or for something really important like ITOM, or for each other. If I imagine my family, there are quite a few (ex-)colleagues amongst the Van Soest, Da Costa, Van Den Bosch and Werksma’s. Colleagues can be like family.

At the end of your life, all you have left is what you have given. When the end comes for you, you’ll have given me a lot. Thank you.

All the best, maybe see you at one last Friday Afternoon Drink, right after my funeral this Friday 27 / 10.

Garmt van Soest

Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2017-10-25 02:00:312017-10-27 21:02:38Amazing

Even Flow

03/03/2017/12 Reacties/in English, Updates /door garmt

Zoe blessed this day by climbing on my bed with me in it (uttering “Daddy is a climbing frame!”), transforming it into a train, tjoeke-tjoeke-tjoeke’ing first to Mama station and then to Portugal. She looked long and deep into my eyes, a rare treat, before descending and running off at top speed. This girl is very comfortable with top speed.

A blessed day it may be, I disgruntle inside. No, that is not a verb, I know, shut up, you’re making it worse. I’m on ventilation 23 hours per day, roughly. I cherish that free hour, using it to enjoy a daily shower without the constant, fast pumping of a machine. Today, though, I’m going to 23 3/4 hours of ventilation per day. No more breathingmachine-free showers. This change means nothing to everyone and the world to me. It’s another concession, capitulation of another piece of independence, another surrender to the disease. Kicking ALS in the balls? Ha, a vain dream for me, these days. Others do, and some small parts I helped put in motion, so, hey. But, me? For weeks now my struggle has been to get enough energy back to just think clearly, maybe even to write, so I can perhaps slingshot my spirit back into another round of battle, out of this swamp of lethargy and depression.
Well, you’re reading this, so what happened? Did the new drugs finally kick in? No. Was it that I finally, for once, went to bed on time? Perhaps. Was it taking Iris’ oft-repeated advice to shower with the breathing machine on, so I won’t completely tire out myself by doing the heavy work of said machine on my stubborn own? Likely. No, what turned my mood, what gave me this tiny flame of inspiration that I will hopefully kindle into a fire… was the following:
Cold. Shaking. Waiting for the water to warm me. Spasms, they hurt. God, why can’t I just grab the shower head myself? Frustration builds in my stomach. Everything is shite. I turn to the meditative exercise that has always, always been here to help me: counting the breath. 1… 2… 3… The machine pumps and wheezes.
“But it’s not even MY breath I’m counting!”, I think, exasperated.
“Was it ever?”, Buddha answers, peacefully, his voice bright as daylight, clear in my head, loving.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2017-03-03 19:38:242017-03-03 20:02:13Even Flow

ALS Kicking: an update!

29/10/2016/2 Reacties/in English, Updates, Work /door garmt

From: Garmt@Accenture
Sent: Friday, October 28, 2016 3:46 PM
To: EveryoneIknow@Accenture
Subject: ALS kicking: an update!

Hi! Remember me? No? Well, that’s a shame, but understandable. Percenture, our internal personnel statistics tool, tells me I have been here longer than 77.28% of you. I suppose not every single one of you 289.535 new colleagues can know exactly who I am. That’s why I have become immortal. Curious? Read on.

So, long story short, I have ALS, and Accenture has been kicking that disease. I helped a bit along the way. I thought it would be nice to share three results and a personal lesson I learned.

Surely you remember the Ice Bucket Challenge, back in 2014. This summer, the follow-up message was: it actually worked!! The discovery of two new “ALS genes” was big news for a while. It was a very special occasion for MD Michael Teichmann and me. Why? Well, because the first discovery of those genes happened right here, in The Netherlands, by profs. Veldink and Van den Berg, from Project Mine. Michael Teichmann and Ronald Krabben (and teams) have been helping these two professors since 2013. Do you know what we did? We contributed to this major step in unravelling the mystery of ALS. Not just with our brains, also with our muscles and money, by participating in the City Swims in Amsterdam and New York. There were also Accenture teams in NY and Chicago participating in “Walks to Defeat ALS”. I’ve lost count of the total funds we raised, but it is well over €200.000 in donations.

The ALS Investment Fund started in January 2014 as a ludicrous dream of three ALS patients, two entrepreneurs and one Accenture project team. It was quickly transmorphed into the highest of potential world-changers: a PowerPoint. While the Accenture team worked hard to rationalize the dream by doing market research, working up a realistic business case and fine-tuning colours of the presentation, I was mostly making huge mistakes in selling our dream to investors. We stumbled across our first investor, then our second, then realized we had better bring in experienced experts. We learned that even in the world of investors and investments, lots of people were really willing to help us! We also learned that no investor was going to give us a nickel until every single question about our idea had a world-class answer. Finding those answers became the job of the guy who went all-in for our idea: fund manager Felix von Coerper.

Felix built a team, a pipeline of prospects, designed an innovative fund structure and wrestled with lawyers. There are so many challenges to meet, so very many unicorns to find and a lot of bridges to be built on the road to a successful investment fund … Each milestone is a huge victory and at the same time worthless unless you get to the starting line. In July this year, we got there. The ALS Investment Fund made its first investment! Amylyx, a start-up in Boston, now has the money to develop something called AMX000035, which has the potential to significantly delay ALS progression.

I have a lot of things to be grateful for and proud of. The biggest of them all is this: more than twenty Accenture MDs, including our CTO and someone named Pierre, have put their money where their mouths are and made a personal investment in the ALS Investment Fund. Their $&€s will go forth and multiply and help cure ALS. I will personally make sure that the right investments are made, being on the Investment Committee of the Fund. I get to ask tough questions before casting my vote, a proud privilege.

The third result to share is about data. MD Alexandra van der Tuin thought kicking data around with our Analytics skills was a good idea. Guess what? It was. First, she set her own team loose on a set of ALS data from 8500+ patients. Steven Nooijen dove head-first in 38 million data points. He nearly drowned, so they decided to call in reinforcements by organizing a hackathon. The ALS Data Challenge was a huge success, that I sadly couldn’t attend due to illness. Luckily, the team had a video made that impresses by showing what brainpower we can gather. Watch it here. The relevancy of our work is eerily spot-on. Remember Amylyx, the company from two paragraphs ago? In the development of their medicine, they use the exact same dataset we “hackathonned”. Our work is of direct benefit to them. The Amylyx CEO confirmed that when he visited me a few weeks ago. Let’s see if we can help them some more, shall we?

What I’m trying to say with all this, is that together, we made a difference. We kicked an ALS testicle. This disease may have eaten me up, but all of you helped to pull closer the day when ALS is as harmless as a common cold. Regardless of the exact size of our contribution so far (we’re not done yet!), to me, this is a Big Difference we’ve made.

Now, let me share a personal lesson with you.

We all know the importance of communication. The only means of communication I have left is the movement of my eyes. In some situations, they are really effective. A blink can convey a thousand thoughts, as long as the person I’m blinking to is telepathic and/or my wife or a caregiver. In most situations, though, they aren’t that useful. I can type with the help of a sensor, but even that is diminishing – the ALS is nibbling at my eye muscles. Chiselling letters in granite would be faster than this! Hey, if this is the first mail you read of me, it’s probably the very first time you read an eyetyped piece of text! You’re welcome, I love giving people new experiences.

So, communication. It occurred to me that that’s where the magic happens. The very best part of my job was talking and listening. In a brainstorm, giving a presentation, preparing an important meeting, exchanging thoughts over coffee, even at a tough customer meeting where you get yelled at, all of those times where you search for common ground or combine your half-baked ideas with someone else’s half-baked ideas… that is where the magic happens, that’s where synergy occurs. You have absolutely no idea how great the gift of your voice is. Thank your tongue, lips, lungs and vocal chords. You’re blessed to have them.

If I look back upon my life, I clearly see where I came from. Schooled as an engineer, I started out in network engineering. I was a huge nerd, proud of it, too. I could talk for hours about OSPF and had no qualms about telling my clients what I thought. Usually my thoughts were not subtle, and I offended a lot of people by telling them they knew nothing. I learned first to bite my tongue and then to change my perception. Seeing differently made me think differently. I took jobs in sales and management. I sold networks, developed network opportunities, managed network consultants, made IT infrastructure interesting enough to talk to CEOs about. After twelve years I was mature enough for Accenture. I joined in Infrastructure, again, Networks. It felt like coming home. Accenture was a treasure trove of interesting work, superb colleagues, freedom, and … ok, you get it. I loved my job. I still love it. Just before I got sick, I reached the top: I was accepted into Strategy. Sadly, I could only do very few dream assignments before getting ALS.

So, immortality. I’m probably not going to live forever, but I intend to live on. I can see where I came from, but looking ahead is like staring into the void. What will you leave behind once you’re gone? Of course, your children. Maybe some changes that you made. What part of your identity will remain? Accenture evolves so fast that it is likely your name won’t be remembered for long. If you have a young kid today, and you were to leave Accenture tomorrow, how many people will remember you when your kid is mature?

In my case, lots! Why? Accenture Strategy NL has attached my name to an annual award.  You won’t have to get ALS to qualify – just be the most inspiring/have the biggest impact/… (the criteria and nomination procedure are TBD). It’s not official yet, but needless to say, I’m prouder than a peacock about it, so let’s hope Sander forgives me for running my mouth.

Time to sign off. Oh, last point: I wrote a book about living with and kicking ALS. Based on the hundreds of reactions and the fact that it’s a top-10%-seller, I guess it’s not a bad book. Everyone in The Netherlands has either read it or doesn’t want to read it. The rest of the world is next, as the English translation is ready! Visit www.evenwithALS.com to read or order the Kindle version.

Thank you, reader, if you made it this far. Writing this simple email took me a full week, I am grateful you took the time to read it.

Till next time,

Garmt van Soest

Senior Manager

“Kicking ALS in the balls”

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2016-10-29 18:21:392016-11-14 18:23:35ALS Kicking: an update!

Praise You

11/10/2016/18 Reacties/in English, Updates /door garmt

True story: I was at this rooftop wedding in New York. Impressive views of the nighttime city, all of the lights. We were nearing the end of the serious part, the “Yes, I do”’s already exchanged. The very official looking judge said to the couple: “Now, repeat after me. We’ve come a long, long way together.” They duly obliged: “We’ve come a long, long way together.” Judge: “Through the hard times and the good.” While bride and groom repeat, a tiny corner of my brain begins to itch. Judge: “I have to celebrate you,” Couple: “I have to celebrate you,” These lines are beginning to sound familiar. Could it be some ancient marriage vow that I heard in a previous life? The judge continues, “… baby.” Couple: “baby.” WTF? Then their last line sounds: “I have to praise you like I should.”

At the very moment they finish, the DJ behind us starts “Praise You” (Fatboy Slim, sampling this), that begins with “We’ve come a long, long way together / Through the hard times and the good / I have to celebrate you, baby / I have to praise you like I should”. Everyone in the audience turns 180°, away from the newlyweds to face the music and the dance floor. The world has never seen a more masterful transition from serious ceremony to instant party.
Later, the bride told me they wanted to use “Fucking in heaven”, another track from the same album, but, you know, her mother was at the wedding, so … I’m glad they didn’t, because I wouldn’t know what to write about fucking in heaven.
Remember that foreshadow about praise? I think it can be a pretty hard thing to receive, praise. At least it was for me, the first thirty years or so. At the start of my career, I was very insecure (who isn’t, right after puberty?). I was accustomed to looking for my “opportunities for growth”, aka faults.
Criticism was good, because it affirmed your self-image and gave you something to work with. Performance reviews that I underwent or conducted would often go like this: “Ok chief, whatever you say, but what do I need to improve? Tell me my shortcomings, instead of what I do well.” Hey, I don’t knock it, it helped me grow, and get the challenges that I craved.
Combining ambition and being content with yourself is a hard thing to do. Combining happiness with meaningful work is not common – in my industry, at least. If you work in healthcare or as a teacher, for instance, your experience may be different. During my career, I’ve met many ambitious people, of all ages and positions, who had neither happiness, contentment nor meaning. Most settle somewhere in between or keep searching, frantic, hoping that the answer lies just beyond that next achievement. I was like that, for sure. How many of your friends can claim with a straight face that they are in that place where everything comes together? Those who do nail it have found purpose, but as I said, it’s rare. I think insecurity is the basis of that unhappiness. It’s common in consultancy – we’re just a bunch of insecure overachievers, really.
There was this man, Dan, who was probably in an important position at our company, but I never really understood what he did, other than being an extremely nice guy. He knew I liked whisky, so out of the blue, on Monday morning, he gave me a bottle of Talisker. “From the Duty Free”, he only said. He flew in from Scotland, for reasons puzzling me, showering gifts along the way.
I remember an assignment in Dublin. He showed up there as well and joined us for liquid dinner (Guinness is, like the tubefood I live on now, a full and complete source of nutrition). In the small hours of the night, one colleague was still working furiously on his laptop, right there in the hotel lobby. Dan and I had a last beer. We talked about our friend Lorraine who was in the last weeks of her pregnancy. He gave me the best tip ever: “Don’t send flowers after the baby is born. Everybody does that. Send flowers now. The last weeks can be really tough, and nobody sends flowers for what is yet to come.” We talked some more and I don’t remember how it came to be a topic, but suddenly he was saying all these nice things about me. It’s not what he said, but how he said it. Somehow it was a perfect moment. He could have called me an eggplant and it would’ve had the same effect.
Normally, compliments would only just feed my arrogance and cockiness. Arrogance, incidentally, is the opposite of being self-assured. Why shout that you are better than others if you know you’re good at what you do? You’re just trying to convince yourself, and it’s not working. Whenever a client patted us on the shoulder, I would say, aloud, “Of course, I am that good.” It felt like a hit, a junkies fix, the effect wearing off too fast. The chase for that fix soon started over, hurtling myself towards another impossible problem. Sure, I had fun along the way, but you have to wonder: was the addiction using me or was I using the addiction? Who was in charge?
The praise that Dan had managed to inject me with was different. It crept beneath the addiction and told me I was OK. Not super. Not only if I made the next challenge. Just … OK. Just sit down for a second, look back, see that it’s OK. Take a breath, it’s OK. I’m OK.
If our employer just paid Dan to have late-night inebriated conversations in hotel bars to deliver compliments, just to do that, he would be worth his salary.
OK, I am exaggerating. I was probably extraordinarily insecure, and as a result, I now overemphasize that part of any manager’s responsibilities. There were several “Dans” throughout my career, and they all helped me to do a much better job by injecting “it’s OK” into my system. I don’t know, like I said, I’m probably super insecure, although most people I worked with would think the opposite, and that’s true as well, because when I was working, it felt so good to do something I was good at.
You have no idea how much I miss my job. It brought so much … Confidence, freedom, joy, connection, even bits of meaning … Good thing I let it fill me up – it helps fuel me to this very day, this fucking awful day, because today my cheek and eyes are trembling more than ever. ALS is having a party on my face, celebrating that it’s winning territory. Fucker. It makes typing so slow today – like carving each letter out of granite with my teeth!
Sorry. Had to vent.
In Plum Village, the monastery of Zen Master Thich Nhat Hanh, the monks have a ritual called “Shining the light”. I am not entirely sure how it works because I was never there long enough to see or experience it. I know that it is about giving loving feedback to one person, by a group that knows that person intimately. The group gather in a serene setting and once the ritual has opened everyone in turn speaks from their heart (or hara) to the individual in the spotlight. Basically, it’s about bestowing all the loving feedback imaginable upon someone coming from a group that knows that individual intimately. It’s kinda the right way to do an intervention. Instead of gathering a group of close people to tell someone he/she is fucking up, because you all love that person, you gather that group to shower love on someone because you want that person to know what your love tells you about him/her. Imagine what it is like to be at the center of that!
If one of my friends is in dire straits, I would rather pick the last approach than the classic intervention process. I also think it is way harder to be the subject of “Shining the Light” than an intervention. Maybe that is just me, though, or people who believe Marianne Williamson when she says: “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.” (read the rest here) After all, if we fear our true self is actually a shining beacon of to-be-fulfilled promise, getting loving praise/feedback heaped upon us is a direct confrontation with that fear. It also puts the aforementioned insecurity in a whole different perspective. Or maybe it frames it just right, like opposing poles, and the solution is right there in the middle: “It’s OK.” Nothing more, nothing less. (I’ve yet to figure out how to fit my fondness of extremes into this …)
Too New Age for you? Fair enough. Let me give you a pragmatic recipe for cheering up a friend. He/she is in real shit and doesn’t know it or lacks something to get out of it or is just really really blue. You sit down, clear your head and search your memory for the tough battles your friend has won, the times when he (let’s assume it’s a guy) was there for you, the tiny moments of utmost meaning when he said or did something that made such a change that you still remember them now. You write it all down and from this list you distill all his powerful traits, the reasons why he is your friend, his strengths and where and how you can support and reinforce him. Etc. Sounds difficult? No, it’s not. New, perhaps, in which case: practice. You’ll be done in 1-2 hours, just try. Get his best friends to do the same.
Once you’re ready and complete, break into his house and hide behind the couch. Or, just set up a meeting. Once the group is gathered, make sure you really connect with your bluesy friend. Watch this short video before you go in to understand where to start. Then, take turns to deliver your feedback. Leave the paper on which you wrote your brainstorm and analysis. Tuck it away in the couch as a surprise reminder for later. In case of relapse, tell him where to find it. Finish off with a long group hug. If you absolutely must, you can then say “… And that’s why we think you can stop overdosing on heroine all the time.”
The question behind my mumbling about praise is why we need the approval of others to grow. Obvious answer: because no man is an island. What matters is how we shape that relationship. At first, I craved approval and appreciation (high salary, happy customers) like a junkie. A functioning junkie with a career, but still, a junkie. As I became aware of that part of my personality, I saw that I couldn’t get rid of it, but I could use it instead of letting it use me.
Actually, you can apply that flip, from “being used by” vs “being in charge” to every single habit, pattern, trait, skill, etc that you are made of. Even thinking itself. Who’s in charge, you or your thoughts? Who is the master of your fate? So, I came to use my sensitivity for approval as a tool to do my job well. I still placed high importance on things like the annual performance ratings, but I wasn’t so dependent on it any more.
Nowadays, I don’t run on praise or approval anymore. I mostly just do. I strive to be valuable; it is almost a daily necessity to add something tiny to the world, something that registers as a positive contribution. That contribution can be as tiny as a smile at just the right time, or a simple email (and there are sad days when it is really nothing more than just that). Whether an act is a contribution or not is measured on an internal scale. The word “internal” in that sentence is important, because (to my own surprise) it signifies that I have finally become the master of my fate and the captain of my soul. Or rather, that I am not a slave to praise anymore (most of the time anyways). Or even better, that all that meditation has opened up my ears to the voice of God, and that it’s not me mastering my fate and captaining my soul but something else, the Big Mind or emptiness or why don’t I throw in some more words that have way too many meaning which I hardly grasp.
Let me try that again.
Nowadays, praise feels more like an affirmation that I’m on the right track. Take this blog, for instance. I’m immensely grateful for every single comment, email or person in the flesh giving me praise for writing it. Sometimes the word “inspiring” flies by. That’s scary, because since long I’ve found inspiring others to be one of the highest things a human being can achieve – to touch that piece of someone that yearns to do whatever is on their internal scale of real contribution. Now, it’s not scary anymore. Inspiring someone isn’t something you can do or achieve. It can happen as a result of what you do, but it’s not to your credit. I just write these pieces, and if someone gets inspired by them, great, hurrah even, but I don’t think my ego had much to do with it.
To be clear, I’m not claiming that some divine light flows through me or something. It’s more like how Tom Waits (who else?) describes songwriting: “The songs are floating up there, and they pick who they’re going to flow through. ‘Look,’ they’ll say, ’that guy there has had a lot of practice, he’ll do all right, let’s pick him.’ That doesn’t mean it’s easy, sometimes it takes years of working before a song is ready.” And he doesn’t even have to get them out through his eyes. Of course, he also describes songwriting as gluing macaroni to cardboard and painting it gold.
It’s also not the case that this is a constant state that I live in. I can’t tell what part of my actions happen like this. I wonder, am I just describing a wish rather than my true experience? No. I like real, I want reality, and after rereading this story ten times, I know this: it’s real.
What also strikes me on reading back those last five paragraphs on becoming less of a praise junkie, is this: something, someone drove me through this lesson, and I should thank it/him for freeing this part of my mind. I curse him often, but credit where credit is true: thank you, teacher ALS. Praise you.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2016-10-11 21:17:522016-10-11 21:18:59Praise You

Bring It On

17/09/2016/12 Reacties/in English, Updates /door garmt
Once again, Nick Cave saved me. A few weeks ago, I had a horrible weekend, a mini depression concentrated into two days. Feeling lonely and full of self-pity, I cried all Sunday, unable to stop even when Paul arrived to break my loneliness. Holy crap, did I feel miserable.
Why? Because I have ALS, you insensitive clod. Because movement requires machinery. Because the person wiping my butt isn’t me. Because the repetitive monotony of my daily routine would eventually grind the spirit of even the Dalai Lama to pulp. Because not a week goes by without the nagging thought that I should really be dead. Because I feel lonely, sometimes even in the company of friends. Because everyone is enjoying the summer, BBQs in the park or vacationing to beautiful places, except me. Because I would strangle someone for a beer, or a burger. Because without the distraction of eating, talking, moving, smelling, (should I mention masturbation yet again?). Without the energy to get wheeled outside, or do anything other than staring at a screen and willing my unwilling eyes to produce or consume something, all fucking day, every fucking day … where was I? Ah, yes, that in those circumstances, you can’t help but look at your life, and despite all your oh-so-clever mind tricks and all your glorious little “I-am-still-relevant!” projects, that despite all of that, let’s face it … my life is the shittiest shit of a category so shitty that I might as well have become a lawyer.
Paul has a long history of rescuing me from loneliness. Back in 2000, when I was living in New York (technically, New Jersey, but let’s keep that strictly between us, ok?), every Saturday when he got off work, Paul would call me during his walk home, hoping that I would not pick up. See, Paul ran a club, so his walk home started at 6AM on Sunday morning. Ah, New York, despite all of your ambition and zeal, you’ll be forever behind us Europeans. Six hours, in fact. So his call came at midnight, and every time I answered, Paul would know: shit, he is at home or at a bar that’s so dead it sounds like a bedroom. Yup, there I was, at home, playing StarCraft, or worse, studying to get better at my job. Saturday night. I wasn’t with friends, I wasn’t out enjoying the nightlife of the greatest city on earth. I was at home, alone, even though I wanted to be anywhere else. I hate, I detest lonely dull nights. Paul knew this, so he called and rescued me from loneliness, every Saturday night / Sunday morning.
Do you know what friendship is?
Anyway. Back to last weekend’s wallowing in misery. This time not even Paul, Miga or Menko could pull me out. My mental demons had some pretty irrefutable arguments, like: “What, you think you’re going to talk movement back into his body?” They tried, though, and through that, they got me ready for Nick Cave’s kick to my system that would jolt me out of my blues.
See, I wasn’t depressed, I just had an attitude problem. Saturday night, Miga and me watched an episode of  Peaky Blinders. At one point, Bring It On played briefly in the background. It tickled my brain, but I didn’t know why. Late Sunday night, I played it again. It’s from an excellent album, Nocturama. I found the opening song to be an extremely suitable soundtrack to your girlfriend breaking up with you to be with another man. Anyway, Bring It On. It was on the second listen that it hit me.
My very first private interview with a true Zen Master brought me right back to the question I had been asking myself since early adolescence. He said: “Perhaps it is good to ask yourself, ‘what do I really want?'” I was puzzled. Zen was supposed to be about selflessness, letting go of the ego, detaching from desire, etc. Right? Now, this small wrinkly old man was telling me to focus on a super egoistical matter: what _I_ want. Ok then. It kinda was my first koan. I had only been meditating for a few years, so I felt like I shouldn’t bite into it straight away. I would nibble at it from time to time. Later, I would focus a whole sesshin on it, dropping the question down into my belly, twenty half-hour meditations per day. What do I really want. What do I really want. WhatdoIreallywantwhatdoIreallywant. Every now and then, an answer would pop up: a BMW? No? Well, two BMWs then? Still no? No. None of that. Every answer was wrong, until finally, during my sixth sesshin, the right answer presented itself.
I went for my interview with the teacher. Blundering into his sacred room, I uttered, “I’ve finally found out what I really want!” He continued looking at the ground, right in front of his knees. He had been sitting on them, in seiza, for hours. His face was sweaty (seiza hurts, eventually) but serene. “And what, pray tell, is your answer?”
“Everything. I want everything.”
So, Sunday night. Nick Cave. It hit me. I was getting exactly what I wanted. Bring it on, life. Bring it on! I want all that you can lay on me. Not just the good bits – I want it all. Do not hold back, please. Bring it on, and see me fucking thrive through it all. Everything, please. I want ALL of it!
That attitude. That’s what was missing. It bounced me out of my blues, is still bouncing me out and in, ‘coz I’m not out of it yet. But if I cradle its’ spark I might, over time, light a torch with it and make my way out of this ugly place. I’m getting there, I think, or at least, I see some stars pointing the way: watching Zoe eat, I know that at least my appetite will live on. Or, playing Keezbord with Steph and friends, Iris and me, we show the world what happens if we team up. We win in such a devastatingly magnificent way that it hurt. Literally – the next day my few remaining muscles ache from laughing.
You know what one of the hardest things is, that life can bring? Praise. At least for me, it was. But more on that later. Foreshadowing, it’s a foreshadow, you got your foreskin and your foreshadow. That last line is a quote from the Peppers’ lead singer, so it must be true. Oh, c’mon, just smile to politely pretend you thought that was funny. Back to business.
The crux of wanting it ALL is in the “And not just the good bits”-part. When I said I wanted everything, I thought it meant: I want to be a consultant and a carpenter and a cook and I want to be more compassionate and also really rich and take responsibility oh and I want to be able to cook better than Menko and be great at … etc. Like a pig, in a cage, on antibiotics, I think now, looking back on what I thought I wanted back then.
Not just the good bits. Just like your emotions. You can’t just be happy, sadness wants to be felt as well. If you suppress one kind of emotion, the others go: “Fuck you, Mr. Sadness is our friend, if you don’t want him around, we won’t come either.” Life is the same way. You try to strive for pleasure and avoid pain, as you should, but if pain shows up, you can’t just ignore it. If you want Life to flow through you, you’d better be open to all it has to bring, not just the good bits. Don’t prefer. Fuck, this is one of the first lessons of Zen, and I don’t think I ever got it, until now, writing this. Thank you, reader, for giving me a reason to sit down and do this.
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Icebucket 3.0

23/08/2016/in English, Updates /door garmt

Good news, everyone!

Icebucketing worked! Good thing, then, that Iris and me didn’t get iced for nothing. Pieces of the puzzle have been found because of it. Now, the actual puzzling can begin.

Watch this movie.
Then, visit this: https://www.als.nl/help/
Then, share like crazy.

Thanks!

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2016-08-23 09:54:242016-08-23 11:49:28Icebucket 3.0

All the Small Things (for Josh and Myra)

20/07/2016/in English, Updates /door garmt

Hi! I’m here to whack some truth upside your head. My truth, that is, and to be perfectly clear I’ll quote you some obscure zen saying: something true isn’t unless its opposite is also true. Chew that. Ah, you are looking confused, you must be a fast learner. Me, I was too stubborn for years to get confused, that way you learn nothing. So, small things. That’s what I’ll talk about today. ‘cos You, dear reader, might totally have the wrong idea. Just like blink-182 (all lowercase, yes, because they figured that that once was cool), whose only hit titles this post, whatever it was, they didn’t get it. Check their lyrics if you need proof. What they díd get was how to perform All the Small Things live at the VMA, with twenty dwarfs.

So, small things. Enjoying the little things. Laughing with your daughter about a raspberry, or enjoying the shade of a!some trees and a cool breeze together with a friend on a hot day. Listening together to a song, reproduced by appalingly expensive loudspeakers. Being content with a small box of raisins, like Zoe, or being content with the last mignardise at the end of a sublime nine course dinner, like me. Your very first paycheck, earned by working on the land when you were fifteen, or the very first investment of the ALS Investment Fund, that you have dreamed of and worked on since you were 36. Blowing a dandelion puff ball.
I don’t see any difference in size between these examples. Do you? I’m guessing that most readers would file “laughing with your daughter” under “enjoying the small things in life”, and a megalomaniac dream of A HUNDERD MILLION €’s not. To start with the obvious mistake: how can playing with your child EVER be a small thing?! She is the most important thing in your life, playing with her is the icing on the cake, the cherry on top, the dog’s bollocks, after you changed her diaper for the tenth time today, and after she emptied her cup on your back as you were kneeling to clean her dinner from the floor and after she kept whining and whining until you almost went crazy and after she kept you up all night and … etc. Or worse, that you had to watch someone else doing that all day, because they can, and you’re paralyzed.
Small things in life are small like the top brick of the Pyramid of Cheops is small. I don’t consider giving Zoë the bottle a small thing, because I am conscious of  the enormous pyramid that this moment is the top brick of. All the little events I mentioned have that in common; huge things, each a pyramid of its own, even the dandelion. Some pyramids are more visible to the naked eye than others, which causes unsuspecting viewers to think of one thing as a small thing and another as a Big Thing. Watch closely, the next time you blow out a dandelion. Do you see the sun and the rain that raised it? The millions of years of evolution that led to exactly this specific piece of DNA? The factors that brought you here, at this perfect moment, at this exact spot, to aid this dandelion in its procreation as you breathe its seeds onto the wind?
If if you see all that, then you see that an investment fund isn’t bigger or smaller !than a dandelion. Then, you finally understand: happiness is found in really big things.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2016-07-20 14:56:592016-07-20 15:32:44All the Small Things (for Josh and Myra)

Music was my first love

22/05/2016/4 Reacties/in English, Updates /door garmt

“Do you want the truth or something beautiful?”, I ask my class of music ‘students’ one Friday evening. They do not know that this is a reference to Paloma Faith, so they opt for beautiful. Ok. Had they opted for truth, they would have watched a grainy, 24-year old clip of Tool, performing Sober in such an intense performance it would certainly have given them nightmares for a week. Beautiful is Jake Shimabukuro’s ukelele rendition of While my guitar gently weeps. The version they get to hear is the best of all Jake’s performances, but since it is not available online, you will have to make do with this one.

I selected some fine pieces of music for this group tonight, but I did not take the time to write explanations beforehand. This resulted in me playing them gorgeous smooth songs, and offering nothing more than short instructions at the end, barked gnomically through my English voice synthesizer. Which guitar player is that on Get Lucky, and how much royalties has he earned with one single guitar? Did you hear 1253? Do you recognise this song from just three notes of the bassline?
Which guitar player? Well? Come on, really? No way. I am humblified when Mark picks out Nile Rodgers, remarking in the 33-1/3rd second of the track that has nearly 380 million plays on youtube (and another 394 million on Spotify) how this reminds him of Chic. Nile Rodgers! I hadn’t even heard of the guy before yesterday, when I stumbled upon him on the website of Daft Punk. Nile wrote pretty much every hit song in the eighties, using one single guitar appropriately named The Hitmaker. That guitar created $2 billion in royalties throughout the years. Ah, music trivia…
1253. Not just the year of Dogen‘s death, also a clue that the lyrics of Killer’s lullaby are sung by a ghost, because c’mon, you can’t expect a living human to sing “he used to do that to me, back in 1253” in a song that also talks about mobile phones. It’s a real gem, this song, because you can just let it wash over you, rest on its ripples of sound layered upon sound, calm down in the smooth beat, get hypnotized by the monotonous voice of Maxi Jazz… Or you can get your curiosity piqued, and discover how many sounds you hear, and which are “real” (ie not created by an electronic device). Or, you dive into the lyrics, single puzzling lines at first, until you see the story, usually shaped as a poem.
Decyphering lyrics can be easy (say, any song by Jack Johnson – no decyphering required), almost easy (Jason Isbell, Eels, Joss Stone), almost difficult (Nick Cave, Gorillaz, NIN), actually quite insanely difficult (Wet Sand by RHCP, or, anything from Nevermind before you had internet: QED) or impossible (It’s allright, Ma or All along the watchtower or, heck, anything Bob Dylan, really (I mean, “You used to ride on the chrome horse with your diplomat / Who carried on his shoulder a Siamese cat”, wtf), or anything Pink Floyd (except The Wall and Wish you were here)). When I do succeed at spelunking for meaning in songs it is so rewarding. You can discover beauty, innovation, wisdom or the sense that some feeling or mindstate you could never quite put your finger on has just been illustrated (respectively, Boy with a Coin, Black History Month, Hurt, Bad as Me).
I know one or two persons who can get all this from, say, paintings, or theatre. I tell you, there are entire galaxies of experience and meaning to discover in this world. One time, just after watching a play, someone remarked: “Of course, that was pretty clear from what he said about the dog.” I stared quizically. “The dog. A metaphor for life itself. Pretty much any time a dog features in a play, it’s a metaphor for life.” I thought the dog was just a dog, like a cigar is always a cigar. To this day I still don’t know if he was fucking with me, but regardless, it had profound impact on me. It was as if I had just learned that there was an entire layer of meaning to this world that just then became available to me, if only I could find the secret decoder ring that would explain all the metaphors for me. A bit like discovering that each time your parents s-p-e-l-l-e-d words it was so’s you couldn’t understand them, like. So, I never got good at interpreting or understanding plays, paintings, sculptures, etc, but I did get to enjoy the lyrics-aspect of music. A whole world’s worth.
(update: turns out the guy wasn’t shitting me, given that someone did a Ph.D. on the mongrel)
Time to answer the third question: just three notes of bassline, can you recognise the song? Let me take you to the place I got the question from. We’re at the North Sea Jazz festival, dad and me and nurse. Marcus Miller is a jazz bass guitarist and he is priming the public: “So, yeah, we were doing this record, going for the sound of particular places, and then, Detroit. SoIsaidtomyself, Motown, the baddest baseline, let’s do the song with the baddest baseline ever. Ima let you guess, I’ll play three tones. Check it out.” By the second tone, the audience, us included, begins to cheer. It’s Papa was a Rolling Stone, and it’s amazing how we all recognize it, you too, really, from just three tones. Powerful stuff, music. We really enjoy the festival, tasting bands left and right. We even stumble across Lady Gaga. The last artist we want to see is Benjamin Clementine (yes, that guy) and as he is not walking barefoot from Antwerp this year, he actually shows up and performs the living daylights out of us. My dad holds my hand throughout the whole set. It is the longest stretch of physical contact with him ever, and it feels good. I feel loved.
Powerful stuff, music. It runs through so many memories that it serves as great mnemonics, like a cord that strings moments together. Take Daft Punk, the guys that created Get Lucky. If I pull their cord, the first moment that pops up is just a few days ago. Paul and me enjoyed Contact together on my new speakers, our favorite track from the album. We know it well, and we are blown away, even though we play it from Spotify instead of how it ought to be played: vinyl. Ah, I remember buying that record as if it were yesterday, not three years ago. Tracing their memory cord further, an old friend pops up, Philip. With him, I saw them live for the first time. Six years after that concert, upon hearing of my diagnosis, he came down to Utrecht to have dinner and show his support. No small feat considering he lives in Sydney. Next up is a memory of me and Steph, in his car, probably on our way back from kitesurfing, blasting One More Time. It must have been 2003. Steph, the guy who introduced me to Nine Inch Nails, kitesurfing, my wife, and… yes, Daft Punk, in 1997. Not that long after we met, back in the days of mp3 and Winamp, when we were both living on campus in Twente.
Let’s pull the Faithless cord from the other end. Where does it start? Three early moments jostle closely together, the first in my living room on that same campus. My TV is trying to show the video of Insomnia, but the reception is bad and the image is messed up. “Wait for that one sound, it’ll cure it.”, Sander says. Sure enough, from the moment that one sound enters the song, my TV shows the clip perfectly. Powerful stuff, music, it can even fix your television. Then, I am in Paul R.’s bedroom, listening to the album briefly, both of us full of enthusiasm. Then, meeting the guy who will become my sister’s first ex husband, giving him my Faithless CD on impulse. A year or so later, getting to see the band perform for the first time, in Aberdeen, with sis and her husband. October 1998. The morning after the show, I fly back to France, and share the plane with… the band!! I shake Jamie Catto’s hand and chat with Maxi Jazz during our stopover (if you know me, you heard this a thousand times already). The next time I see them, they are on stage at Lowlands Festival, but I couldn’t tell you the year because I was too stoned to remember anything except that it was a really great concert. Then they brought out a few crappy albums and I lost interest, until they announced their comeback tour. Re-listening No Roots I discover that the album version of Mass Destruction is oddly void of melody, minimal meets triphop. Then, summer of 2015, the comeback concert is there, and so are we, Iris, Albert, and… Paul R. I feel at ease and almost normal – rare. We wonder why they never do Don’t Leave live, and I eyespell J-A-M-I-E. The vocals are his and he left ages ago. Albert and Paul chat about Jamie Catto some more, mention that he did something something “1 Giant Leap”. I forget all about that, until Insomnia is on the radio yesterday morning. I’ve been playing 1 Giant Leap ever since.
Music was my first love? Wrong. That was my mother, mr. John Miles. And it won’t be my last, either. Nice try, though. I think I do love music – as far as it is possible to feel love for a concept. What is it that we love when we love the idea of something? A human is an idea, the “I” is a concept, so the notion of loving an idea isn’t that weird. Let’s step down a level: objects that do stuff. A song that makes me feel good is easy to like. Is that love? Or do we just like the effects of music’s objects? Different example: at one point, I loved my car. How shallow! Would I still love it if it had a broken axle, a smashed windshield, a gearbox stuck in 1st, a rattling suspension and if it was not a BMW (metaphor-alert)? If it couldn’t accelerate at breakneck speed, corner like glue and carry me gently, or do any of the other things that made me feel so good? At what point would you stop loving an idea if its incarnating objects cease to function?
I betray my self-centered view of love with this paragraph; love should be the desire to make the loved one happy, not getting thrills from something. Mental picture: try making your car happy, or music. Well, my sis does. She plays music in an orchestra. I just consume, and to do that, I use objects, that I love I’m really fond of. Two such objects are my speakers. My new speakers. Holy crap. I love the way they reproduce music! In our first weeks of listening, we noticed that we could actually hear how Thelonius’ piano was oriented in the room Solo Monk was recorded in, to name but an example. We never actually realized there were piano and violins in Chop Suey!. Mr. E finally has breathing room in Lone Wolf. Nils Frahm is actually quietly singing along to Hammers. Et cetera. They make me feel great, these speakers, but of course this isn’t love. Love is the tearing sensation in my chest when I miss Zoë and Iris. These speakers are the most satisfying object I’ve ever owned, but compared to real love… meh. I love you, girls.
P.S. To offset the selfishness of spending money on me, I quickly follow up with a donation to charity. Bought something for yourself recently? Fear not. My friend James Faust can help you out. He’s fundraising for Project Mine, and will be happy to accept your donation. Read his incredible story on his blog.
P.P.S Rest easy, Eric. Shit.
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L’enfer, c’est les autres

17/02/2016/9 Reacties/in English, Updates /door garmt

Only a person as conflicted as me would choose a French quote to title a post intended for the most uni-linguistic audience of the world: Americans. My US friends keep asking for an update, so here I am.

Hell is everyone else, thought Sartre after watching CNN, then wrote a play around it, called it “No Exit” and drank some more Pernod or Cointreau or whatever it was French artsy types drank those days. I never finished reading the play, but that doesn’t stop me from misquoting him. “L’enfer, c’est les autres” has practically become my motto over the past weeks, coupled tightly with that other hell-proverb, “the road to hell is paved with good intentions”. Everyone around me tries their absolute best, but…

If you are one of the people taking care of me right now, please skip this post or understand that the following is free from blame or ill will.

Returning home from the tracheotomy was not the easy ride I thought it would be. Care has intensified to thirty hours per day. That is not a joke. There are two nurses in the mornings and evenings. Now two is a duo, but three is a committee. In a duo, not much needs to be said. We both know our jobs – I do nothing, the nurse does the rest. With two nurses, everything needs to be debated and discussed. I am surrounded by talking from the moment I open my eyes. Every. Single. Action is accompanied by words, nonstop chatter. Iris wakes up on Sunday to find three near-strangers conversing in her living room: that was the day shift relieving the night shift. There are also a few new ones in the team, and not all of them have learned that I’M NOT DEAF, so the chatter is interrupted with people shouting questions. Since the new nurses don’t know me yet, there are a lot of questions. I counted them one morning – 178 questions before I’d had my first coffee.

Every new nurse has to make the same initial mistakes, so with five new nurses… Also, 24/7 care means literally never being alone again. No more privacy. Everything I do goes via a computer screen, out there for everyone to read along. Most of the nurses don’t comment when I shop, chat or write. Most of them. Others still have to learn not to offer unsolicited feedback on my writing process, or to stay out of a conversation between Iris and me.

A little push, here, to get me into bed, and my leg folds like it hasn’t folded in a year, popping my knee so I lie awake for hours from the pain. I get a new piece to an existing tattoo. Basically, the skin is an open wound for the first 24 hours, which is carefully noted down in the log book, which the guy that grips right in the painful spot hasn’t read yet. Same for the woman who tries to calm me down by rubbing and patting my wrist – right on the new tattoo. There are so many big and small mistakes, it feels like all I’ve been doing for weeks on end, is trying to get the newbies to stop killing me. It’s a good thing I can still breathe without a machine (which is what I do for most of my waking hours) or I’d be blundered to death by now. When it isn’t the newbies, it’s the new acts of torture that come with the tracheo, which require gloves, which some nurses now wear full time. That might seem like such a tiny detail, but it increases the distance between them and me, reducing my humanity even further. I now spasmbite on my tongue so hard and so often that it’s a miracle it’s still in one piece.

Zoe can’t always rescue me. She has too much living to do and I feel I should be there for her, not the other way ‘round. The house is busier now, and I think she only enjoys my company when she’s calm. I watch her a lot, but interaction is so limited, a handful of brief moments per week, that I get convinced I should just finish my to-do list and check out. I’m of very little use to her.

I know everyone is trying real hard, and that it takes time to get used to each other, so I dose my feedback very carefully. At first I only point out dangerous situations, or when they hurt me too much. I see the concern and worry in their eyes and it hurts to conclude that I have to dismiss several of the new nurses, and two of my longest-serving ones are leaving. But that’s not the worst of it. The worst of it, is that my world consists only of this. There is nothing but these petty annoyances. They look downright laughable now I’ve written them down, but a week ago, when I was in the thick of it, all I could think of was death and how soon I should invite it in. Dark days. I just did not have enough energy. All I could do was suffer, for weeks on end, with no noticeable improvement. For the first time in my life, I knew real despair. I’d felt it before, but I’d always had enough energy to act it. Real hopelessness doesn’t do drama.

The turning point surprised me. I wasn’t really expecting one anymore. It didn’t feel like a turning point at first, but somehow, the idea of visiting Martijn with some friends came to mind. He had something new to show us, so off we went. Scary, because I hadn’t taken a trip with this new hole in my throat. The nurse that day was brand new in the team, but we’d been getting luckier. She was from a new specialized group we have found, and she was nearly as good on day one as some of my most experienced nurses. We packed enough medical supplies to set up a clinic and boarded the taxi. Next I found myself in Martijn & Marieke’s living room, with friends. The group in the room had experienced trips to Japan, Brazil, the USA (coast to coast), Scotland, the Savoy and countless other adventures with me. None of that matters now, though. All that matters now is the two-week-old bundle of cuteness that’s dozing in my lap. Paul, Menko, Miga and me mull over the idea that we’re all fathers now – where did our youth go? She’s so tiny – no way was Zoe that small! (Checking pictures later on confirms that she was) And for the entire duration of our visit, their brand new daughter lay in my lap while Martijn and Marieke beamed with pride. I was completely mesmerized by her. I watched her dream, doze, move. We have so much in common! Neither of us can speak, chew, control our limbs or drive a Ferrari. We both cry a lot. I vanish when she makes eye contact, and my belly pushes her feet with the flow of my breath. I realize that Sartre was half right. Sure, sometimes other people are hell. Right now though, other people are heaven, one in particular. Welcome, Nyke Robin Marjanne Post!

Epilogue

I can’t get no sleep (have I used this reference before?) the night after meeting Nyke. From midnight to three AM (… no, I haven’t referenced Faithless yet, it was KLF) I ponder the Matrix trilogy and realize the reason I thought, ten years ago, that the third movie was crap, is because I didn’t understand it at the time. Woah. It still doesn’t make the trilogy the masterpiece that the first part was, but this is a nice thing to discover, and I chew for a while on what the Wachowski brothers (back then, at least) were trying to show me about life. Suddenly it is six AM and I am wide awake again. I wonder where this nervous energy comes from? As if delivered straight into my chest like a parcel, like a new Iron Man engine or something. I trace my body from the inside, running a mental finger along the inside of my skull, trying to find out where this is coming from (Zoe? Nyke? Heavenisotherpeople? Perhaps simply that I kicked myself out the door again?) and what does it mean? Some odd part of me wakes up and answers: Oh, crap. Here we go again. I thought we were finally done? Does this mean that dying is off the table? Well, I don’t know, this might just be a final twitch. I will probably continue on the downward spiral. But for now, there is a little piece of positivity, brimming with energy, of, well, life. Stop thinking and live it!

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If you have ALS…

09/02/2016/11 Reacties/in English, Updates /door garmt

UPDATE FOR DUTCH READERS (July 2016)
Zeker 50% van de ALS patienten heeft last van dwanglachen en/of -huilen. Hier is een geneesmiddel voor verkrijgbaar, dat mogelijk ook helpt bij praten en slikken.
Ook is een Nederlandse versie van deze blog beschikbaar.

 

If you are experiencing ALS too, this page was written specifically for you.

When I heard I had ALS, I looked around on the web for stories of other patients. I didn’t look too long or too deep. Knowing what is ahead of you is not necessarily inspiring, but at the same time, I saw value in being prepared. I got quite a bit of motivation, perspective and understanding from talking to fellow patients and reading other blogs. I also know several people around me found comfort and wisdom in blogs of other patients.

What I attempt to do here is summarize what I think is useful to know if you find yourself in the horrible position of suddenly being someone with ALS. I try to keep it chronological, as in, the more confrontational stuff comes later. At the end, there is a section on practicalities. I realize that as ALS patients go, I am one of the lucky ones. In my country, mandatory healthcare insurance covers every imaginable medical bill, and the local municipality pays for most of the rest. Research, care and public awareness are among the best in the world, here. On top of that, my employer made sure I have no money worries, and we have a huge social support network. I believe my advice is universal, but I realize that I talk from a very luxurious viewpoint. Basically, YMMV. End of disclaimer.
So. First point. No one can tell you what to do. If there was ever an event in your life that puts you in charge, this is it. Almost nobody can imagine what it is like to know what you know. Of course it helps to listen what your loved ones want; they have been hit with the paint bomb too, but ultimately, you are the one who makes the decisions. You may already know this, but I had to remind myself repeatedly. It is somewhat of a paradox; you do not suffer alone, imagine what your parents have to go through… and yet, the responsibility for how you now live your life lies solely with you.
Then. Time is now your most precious resource. Time and attention are the biggest things that the diagnosis robs you of. My grandparents lived actively into their 80’s or 90’s, so I always assumed that I had aeons of time. Suddenly the last fifty years of my life were gone. Always wanted to learn folk dancing or visit Papua New Guinea? Now is the time. Really, now. Stop reading and go for it. Don’t waste time on things you dislike. If you like working, work. If you like being at home, be at home. Etc. You get the picture. Waking up is highly recommended. A friend of ours summarized it like this: “Find the things you love. Find the people you love. Do what you love with the people you love.”
Nobody knows how much time you have. A lot is misunderstood about ALS. For instance, no one can predict the progression of your disease. Studies are always performed with groups of patients. You are not a group. On average, people with ALS live x years and y months. Great. On average, you would not have gotten ALS, yet you did. And there is absolutely no one that can predict if you will get hit by a bus tomorrow or live another fifty years with the disease, just like Stephen Hawking.
Get the right care. Find a neurologist who specializes in ALS and check all your assumptions with him or her. The average neurologist sees one case of ALS per ten years. A specialized neurologist could see one every week. That experience goes a long way. In the Netherlands, all patients with suspected ALS are referred to a specialized center that has diagnosed hundreds of people. If you were your neurologists first case in ten years, it might be useful to get a double or triple check. Then, get a multidisciplinary care team. Research shows that several disciplines (neurology, rehabilitation, speech, diet, ergo, psychological, physical therapy, etc) working together for you can be as beneficial as riluzole.
Take a break.You may think your body is ill, but the initial impact is mostly mental. One could argue that the whole disease takes more of a mental toll than a physical one. Regardless, wrapping your head around the news is no easy feat. I spent the first six weeks running around like my hair was on fire. I felt the urgency to live, but if my wife had not dragged me off to Tarifa for some kitesurfing, I would have been both divorced and dead of a heart attack.
Mobilize support. Don’t indulge in foolish pride. You got struck by an extreme spot of bad luck. It’s really OK to let others in. Don’t rob people of their chance to feel useful in the face of disaster. In fact, it is their disease, too, and they also need a way to deal with it. Make sure your supporters are a network, as they may require support from each other as well.
Be blunt. Use your disease as a crowbar. You no longer have the luxury of waiting. I pried open doors, procedures and bureaucracy, and if asking nicely didn’t help I hit people over the head with my crowbar of truth. No, I can’t wait for three weeks to see you, because by then I might no longer be able to walk. Whatever you are trying to get done, just be open and realistic about why time is different for you than most.
Manage your hope. Most are convinced there is none. That is not true, because I have hope, so there. ALS will be cured. The chance that it happens in your time exists. A crazy professor might stumble across the solution tomorrow – or better, yesterday. Hope keeps you going, it is the spark that ignites your passion. Vitamin D might just cure you, or maybe stem cells. Who knows? Doctors know the odds, so don’t expect encouragement from them. Being an ALS patient by definition puts you in the rare odds category, so… who knows?
Also, your object of hope might shift. I know several patients who hope to survive ALS. I believe their hope is realistic, and if you knew them, so would you. I progressed too fast to keep hoping for survival, so my hope shifted. I hope to the point of knowing that my daughter will have a beautiful life.
Pick a fight. There is bound to be at least a little bit of anger inside of you. Even a buddhist hippie flowerpower treehugging new age nun would swear and kick her pet if she had to deal with ALS. It helps to pick a few targets, and let your anger fuel your righteous smiting of said targets. There is satisfaction and use and perhaps purpose in raising money or paving a path for fellow patients or kick the crap out of a boxing bag while you still can. There are more mature ways of dealing with your anger, perhaps you are free from it, but for me, it helped to embrace my anger and put it to use. Still, I had more anger than I could channel, and some of it bled into my relationships and my marriage. That is my biggest regret.
Love / hate your assistive devices. When you get the diagnosis, wheelchairs and breathing pumps are not happy topics to think about. I’ll call everything from a crutch to a tracheotomy a “thing”in this paragraph. Every single thing that you have to use is an undeniable reminder that things will not improve. As such, you want to push those things away as far as possible.
Until, suddenly, you realise that they massively improve your life. Then you can’t t wait to get your hands on the thing. Yet it will take weeks or months to get it. I spent three months to get a chair I could then use for a month, until the disease overtook me again. Bottom line: it is easy to get behind the facts. Don’t spend the rest of your life playing catch-up. Also, the amount of things available is huge. Each thing can bring you independence and joy, but each thing is also a confrontation. If you can, delegate this. If you are Dutch, check out the practicalities-section.
Invest in your caretakers. This one is obvious. Whether the people taking care of you are professionals or loved ones, be as good as you can to them and be as clear as you can afford. You will come to rely and be dependent on them. Communication may get more difficult over time, so give them your attention. You may want to ignore them later on, as I do, because I am literally never alone. A good foundation early on makes it easier to cope with the strain of having someone do everything for you. Don’t be afraid to give feedback. I find it difficult to whine about the exact way to wipe my spit away, but unless I do, I will have drool all over my face.
Talk to fellow patients. Not many people know what it is like. Fellow patients do. Your national ALS association (who love to know you, so sign up) can put you in touch with patients like or unlike you. Their experience and empathy is priceless. For instance, I thought life would dwindle as the disease progressed. Then I met Eric Valor. I learned about the companies he started, the classes he took, the drug research he did, the early drug access movement he was pushing, the articles he had written. I chatted with him, on Facebook, like you would with anyone. Then I realized he had done all of this and much more with his eye muscles only. Read that again. By existing, Eric taught me that it is possible to have an active, purposeful life even with late-stage ALS. Granted, >90% of patients do not (want to) make it this far, but the fact that he exists was inspirational for me.
Be useful. As you change, you can’t do what you could. I used to talk for a living, and my voice was the first thing to go. Damn. Am I still me if I can’t hold my wife anymore? No, I am not. I am never the same me. ALS forces you to refind yourself. Everybody needs to have purpose and be useful. Find yours, if needed, in different ways or places.
Cry. I do, lots. Don’t deny the pain, powerlessness and frustration. They need to be felt.
Ok. Finally, a list of concrete practicalities. These tips are pulled together from several patients.
  • Diet. Eat lots and health, preferably organic. Your body is fighting a battle, give it clean fuel. ALS messes with the metabolism and losing weight is a bad sign. Drinking lots of water, several liters a day, keeps cramp and stiffness away. Alternatively, you could say, fuck that, I love unhealthy living, I’m going to enjoy all the cigarettes, red bull, vodka, McDonalds and pizza that I can, because being happy is also important. I kept somewhere in between, back when I could eat. Now I have to get processed sugarwater as my only nutrition.
  • Supplements. There are lots of readily available food supplements that MAY have a positive effect on ALS, for instance, plain old vitamin D: link, link, link, link, or vitamin B12: overview. Regardless of all this research, I never found a single neurologist who would recommend any supplement. The most affirmation I got was “Well, it probably won’t hurt you.”. Doctors hate giving false hope, so… judge for yourself. Popular ALS supplements are Vit. D, B12, Acetyl-L-Carnitine, Resveratrol, R-Alpha-lipoic acid, magnesium, omega 3, milk thistle, and unicorn poop. The reason that doctors don’t take me seriously is probably because I included that last one. Back to serious. In 2013, we (that is, my sister and some smart friends) reviewed all the research on supplements we could find. One day, I will tidy it up and put it on here. In the meantime, if you are interested, drop me a note. Contact form on homepage. Also, this site has loads of info about supplements.
  • Nuedexta. About 50% of ALS patients has problems with involuntary laughter or crying. This is known as PBA and Nuedexta is an approved, official medicine for it. Without it, I can’t function. Unfortunately, despite being approved in Europe and the US, it is not available everywhere yet. Most doctors I met didn’t even know the drug existed in the first place. Fresh research shows that it is even effective against other bulbar symptoms like difficult swallowing or speech impairment. Mail info@alsworldwide.org if you need to know more.
  • Get a massage. It alleviates the cramps and stiffness and boosts your immune system.
  • Get cold. I take cold showers to feel warm all day, but I know patients who take this one step further and chill in the snow, in nothing but underpants, for a relaxed thirty minutes. They have learned the Wim “Iceman” Hof method. It helps their body do things they never thought possible, and if you have ALS, that is a good thing. Check out www.innerfire.nl. It is truly amazing what anybody can do with his method. Besides, it saves heating costs.
  • Stretch. Another thing that alleviates cramps and stiffness and reduces spasms and overactive reflexes.
  • Work out. Do not overexert yourself, but get your heart rate up. Unused muscles fade faster.
  • Be smart about which assistive devices and assistive technology you can get. I speak with a computer, but it is my voice talking. That piece of my identity was saved, and I have met several patient who had wished their speech therapist had known about it. I got a Tobii sensor to use my computer (the PCEye Go came out best in a comparison we did of six sensors), and another Tobii device to communicate. My life would be unlivable without these things, and yet I know patients who needed but lacked them. I got a device to keep on kitesurfing, even. If you speak Dutch, check out this page.
  • In The Netherlands, everything is available and paid for. Some things are easy to get, like small custom made utensils, but some things are hidden behind layers of bureaucracy, like the right wheelchair. I fought for nine months to get my Permobil C500, and it is worth that investment, as I spend up to 14 hours per day in it. It is important to build a good relationship with your ergotherapist, your speech therapist, your rehabilitation doctor, etc. Educate them, if you must, because they are the ones whose voice leads the way into the insurers and the WMO.
  • … I am finally done talking. If you read all the way here, I salute your perseverance. Now scram!

Garmt and RJ thank prof. Veldink for fact-checking our ramblings.

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Shabazz Palaces.

29/11/2015/7 Reacties/in English, Updates /door garmt

Some misguided fool said just the other day that I know a lot about music. To prove how immensely mistaken she was, I went to the “Le Guess Who?” festival. More than a hundred bands playing, and I didn’t know a single one. Not one band. Zero. I kind of should’ve known. Recently, a friend tipped me to Loon, a short album from Olafur Arnalds and Nils Frahm. If you are like me, you would go “WTF, and I thought ‘Garmt’ was a weird name, who are these guys?!”, so I was super excited about what I thought was a hidden gem. Chalk it up to coincidence that one of my visitors had seen good old Olafur in concert, twice. When another friend said, “Of course you know Nils. Who doesn’t?” I started to wonder, and looked up Nils and Olafur on Spotify. Turns out both guys each have more listeners than Jamiroquai. I am officially out of touch. Especially so because my younger readers will now wonder who this Jamiroquaiguy is. Well, it is a band, whose lead singer crashes expensive cars, sometimes in his own moat.

So, Le Guess Who?. We strolled around the only wheelchairfriendly concert venue in Utrecht, a massive place with at least seven simultaneous stages. Amongst our group of six we only knew which particular band to avoid; Sunn O))). We wandered, from Destroyer to Magma, past Red Light Radio into Cloud Nine. Ha, gotcha, that wasn’t a band name but the name of the room/hall. Crushing careless feet and breaking teenagers shins we rolled me straight to the stage. The rest was history. A performance more significant than this hasn’t been given since Bob went electric. Well, ok, hyperbole etc, but this was the most original thing I had heard since, say, Mars Volta. Avant garde hip hop. Beats so glitchy, vocals so diverse, it was completely unpredictable and… yes, it was delightful. I grooved, I was befuddled and baffled, I couldn’t make out any of the lyrics and it didn’t matter. Even their outfits were baffling. I absolutely loved every second those two guys on stage were at it. I would later read that some newspaper called their album the hip hop equivalent to Trout Replica, and as we all know, Captain Beefheart was Tom Waits’ biggest influence when he redefined his career with that album, was it Heartattack and Vine (“Don’t you know there is no devil, only God when he’s drunk!”) or Swordfishtrombones? No, I still do not know a lot about music, I just know where Google is.
Anyway. Show over, we made our way to the elevator, and ran into none other than the artists themselves. Now, most people would get a little uncomfortable when they offer a handshake and get only a drooling grin in response. Shabazz Palaces, though, was not most people. MC Ishmael Butler asked if I can hear, said “It’s cool”, positioned himself in front of me, and looked straight into me. For a few immeasurably long seconds, we were in contact. We were two human beings. For a nanosecond, I thought about laughing, but that would have broken the contact. Then the moment was over. He walked on, touched my arm, let go. Holy crap. You see, 99.5% of all my eye contact is utilitarian. It is “I want” or “I need”. And sometimes, on nights like this, when my friends take me out, I can’t escape the image that they are lugging my memory along instead of me. Like bringing the urn of your deceased mom on holiday with you. So thank you, Shabazz Palaces, for rocking insanely hard, and for remembering me that I am a human being. I still feel that look.
PS. Yesterday I nearly died (again!), because of some phlegm. Yes, Dutch readers, you learned two exotic words today: slotgracht and slijm (English has more words for spit than we do). Luckily, Samira saved me. It is certainly my intention to say a proper goodbye, and not be hasty about it, but, you know, accidents and incidents happen, and if they do… don’t be mad. Also, do not be disappointed if I live ten more years and win the Nobel prize for Peace, Literature and Science, ok?

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-11-29 21:56:022016-01-05 11:13:35Shabazz Palaces.

Lost in translation

20/11/2015/4 Reacties/in English, Updates /door garmt

We must have been the only tourists ever to go to Japan to stay in the hotel that Bill and Scarlett stayed in in that one movie. You see the weirdest things on TV. The hilarious part is that not one single non-Dutch person (them being the socalled target audience for this post) would know that I am referring to footage of our holiday that a million Dutch people saw on tv. Anyway. While you’re waiting for the next blog (which, incidentally, is going to be very long (the blog, not the wait)), I thought I would share a few updates about the book.

First of all, English readers, rejoice! The book did well enough to warrant the effort of a translation!

Second, despite all the work that went into creating the companion page for the book, where you will find a.o. the Spotify playlists, exactly two people visited the page thus far.

Third, did you know this blog got its title from a poem by Menko? Try translating poetry, or try finding an English title for the book. Impossible! Luckily we specialize in the impossible. Here is the translated poem:

Even if you know there’s less time ahead of you.
Even if this is all that remains, all you can confront, without fear.
Even if you have the courage to live on, to kiss and be kissed. Every single day.
Even if that’s what life has in store for you,
Then so be it.
Even with ALS.

Which also brings us to the English title: Even with ALS. Thank you, Marjan.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-11-20 14:10:472015-11-20 14:12:34Lost in translation

Essential Communication

17/10/2015/1 Reactie/in English, Updates, Work /door garmt

My next blog is for Accenture, specifically the Country Managing Director, Manon. It can be found here: http://www.accenture-blogpodium.nl/column/essential-communication/.

 

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Wrong

13/10/2015/4 Reacties/in English, Updates /door garmt

This one is a bit of a lecture, folks. I guess it is my way of dealing with disappointment.

ALS medicine is a tricky business. The best way to introduce this is with an old joke:
So I took a train the other day. No, that is not the joke. I studied in my pre-BMW days. Well, studied… I was a student. And I took the train every so often. One day I sit across from this weird looking fella who was tearing a newspaper into very thin, long strips. Each time he completed a strip, he rubbed it on his sweater, got up slowly, opened the train window, and threw it outside. I couldn’t help myself and burst out: “Why, dude, why!?” His response was a deadly serious look and a whispered response, “This prevents elephant stampedes.”
“But… There are no elephants anywhere near!”, I retorted. One corner of his mouth curled up, he looked at me like I was catching on. “See, you should be thanking me!”
This has nothing to do with ALS research. But imagine that this man is the ruler of the empire you live in, and that you have to convince him that strips of newspaper do not, in fact prevent elephant stampedes. That is kind of what it feels like, drug trials.
So let me explain why it feels like that but actually isn’t.
It feels like that because you have ALS and one day read about an exciting new drug, that has passed a number of safety tests in humans and even shows positive results in some trials. Let me spell that out for you. You are sitting in a supersonic train towards certain death, going straight through hell, and you here rumours about an emergency break. Wow! Here you were, sure there was no hope (on the river), and all of a sudden, here it is! Maybe all those nightmare stories that you have been writing can be thrashcanned after all! So… You will do ANYTHING to get your hands on this stuff!! You read about stem cells, and how one person recovered so much on them that he was able to walk again! Without a cane! Or the promise of a completely novel type of drug that shows hugely statistically significant results in seven out of eight patients! I have probably once known what ‘significant’ means, so, jay, good news! Get me those drugs, and get them to me now! I will kill anyone who stands between me and those lifesavers and yes I realise that that is ironic, like fighting for peace is like fucking for virginity but I don’t care because I am dying from ALS so fuck you! Please? Don’t you get it? All I want is a little hope!
So I drive to the farmacy and order me some Neuralstem, some Ozanezumab, some GM604 and some Tirasemtiv. The pharmacist looks at me like I am a junkie, or worse, a record collector. No can do, hombre. Those drugs can’t be bought, and even if they could be bought, they couldn’t be sold. It is going to take at least a few more years before they hit the market. You know, as in, not in your lifetime. Consider that. The cure might exist, it is just blocked by red tape. The whole situation is starting to look a bit like this cartoon:
 
Then you learn that the whole matter isn’t as straightforward as you thought. That miraculously recovered stemcell patient is one out of twelve patients who were in a trial. The other eleven had no recovery:
 graph_topright
(taken from the stem cell test report)
The seven out of eight patients that responded were all the patients the novel drug was tested on. For twelve weeks only. Hmmm… You remember how, for instance, Bernard retained pretty much full functionality for at least the first four (!) years of his illness, whereas you were losing one key function each month after the first year.
What are the odds that “succesful” trials didn’t just have seven Bernards and one Garmt? Or worse – what if we did find the drug and tested it on seven Garmts and just one Bernard? Hmmm.. So that is why “they” want to test these medicines in at least two big studies before releasing them to the public. Also, releasing these medicines to the public earlier would mean that finding participants for your trial gets a lot harder. Why? Because scientists believe that the only way to see if a drug works, is by doing a placebo controlled trial. Meaning, half the group gets water, the other half gets the drug, then you hope to see a difference between the two groups. Nobody except research HQ and participating farmacies know who gets which. Who would take that chance when you could get the drug somewhere else?
What this all boils down to, is the following. I participated in a big trial, along with 302 other patients, spread out over 37 research locations across the world. A trial of this size costs serious money, we are talking tens of millions, plus the research done to get to this point… So if GSK wanted to make that bet, I figured I wanted to bet along with them. For a year, I spent every other Thursday in the hospital, getting tested and pierced and measured and crushed under the gravity of the situation. For a year, I got IV’s with the label OZANEZUMAB OR PLACEBO. In the last year that I could walk, I made my way to the hospital every other week, so “they” could see how fast I was dying.
I am glad that I did this, and I recommend every ALS patient to participate in at least one trial.
So the other week I got a letter. The trial is complete, so participants (those that are still alive, anyway) can be informed of whether they had the actual drug or the placebo. I would have gotten this letter in July, but they sent it to my old address. Hey, that’s OK. It puts the ALS Centrum at 99.5% errorfree, still leading the pack! (I estimate the revalidation center at 80% errorfree, my insurance at 70%, JoostZorgt at 65%, Kerstens at 50%, RDG Kompagne and Medipoint at 20%, and Beenhakker have managed to conduct a whopping 0% of our transactions free from error)
Anyway. The letter. It told me I had been receiving the placebo. In this study, my job was to die “normally”.
This is a disappointment, but not the disappointment I was referring to when I started this post.
The disappointment is this: It would not have made any difference if I had received the real drug. The trial failed to show a significant difference between the drug and the placebo. Failure. Disappointment. Wrong. No new drug for ALS patients. What we learned is another thing that does not work. It makes the search for our medicine seem like this.
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California Love & a submarine of particular color

30/09/2015/4 Reacties/in English, Updates /door garmt

So, today, Juel walks in, sees the object in the picture below:
2015-09-30 12.24.46and asks “What the crap is THAT?? And what does it do??”. Without missing a beat, I put on this song, and this one at the same time, and type the following, 100% true conversation:

 

that is mad max,.

the fan was one mm too high for the case,.
this is how we solved it.

well

let me tell you.

the specs were set by a hungarian engineer who flew here twice to design and build it.
the unit was assembled with an on site consultory supervision by the md of cloud computing of a huge bank in the us
i also had him hang up shelves.
there was another guy who also made a shelf but we ended up not using it.
the cutout of the top was done by a professional steelworker, who misunderstood our request and used !a drill instead of a plasma cutter.
i know
that would have been so! cool!
imma post this as a blog btw
ok.
then
the elevation was designed by a ph.d. in physics who spends his days looking for nanometers
nottomention, the invaluable support from his polish girlfriend
and her mother
and her daughter
the ph.d. also did the first coat of paint
then, my sister flew in from new zealand
to alternate between sanding and spraying for three days straight
that is one hundred layers of yellow paint, my dear.
could you grab my phone from the study and make some cute pics of the thing?
ok!
ill continue.
so.
the mount was made by a professional welder who screwed the screwholes the wrong way around
luckily we werent screwed, paul found a way around it.
then
last night
my best friend paul put it all together
including ups
because zoe has learned the unplugthepowercord trick

to answer your question, what it is
it boots in eight seconds
it runs windows ten
it has one of the fastest i5’s on the market
runs on literally half the power of a lightbulb
and it
never
ever
makes me wait.

still
the cpu in Iris’ macbook has just a teensy bit of a higher score on passmark.

damn it.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-09-30 20:50:352015-10-13 14:22:50California Love & a submarine of particular color

Example of great gifts

30/09/2015/1 Reactie/in English, Guest Author, Updates /door garmt

On this wicked journey, there are some pretty neat surprises and gifts along the way. One that really touched me was a message from an Imam, who had come across my story and adressed me in such a heartwarming and respectful way… it was impressive, all the more so because of the members of his congregation that wished us well after the Imam had dedicated the friday prayer to us.

The mail below was of the same unexpected impressiveness. I have not seen Karen in ten years.. As with the Imam, her belief systems and practice may not be identical to mine, but we probably agree more than that we differ. Shame it is so hard to describe.

Below, the gift she sent me.

———- Forwarded message ———-
From: Karen
Date: Wed, Sep 9, 2015 at 7:24 AM
Subject: Prayers
To: gsoest@

Dear Garmt,

Although it’s a long time since we met, I think that you will know right away that this is from Matthew’s mother. I have been reading your blog recently, at least some of your postings in English, with interest. As you may know, with my background, death is not frightening to me, nor do I think you will disappear. I choose to believe that the consequences of our actions in body speech and mind will continue into a future life. Sometimes this is called our mind-stream, which is unending until we atain enlightenment.
Actually the reason I was writing to you is to tell you that I have included your name on a list of those we pray for at an intense 2 week teaching and practice session I am attending. These Dzogchen teachings are only by invitation, which means that all the people (more than 150) there are dedicated practitioners. I am sitting besides Ani Jinba (Eugenie de Jong from Amsterdam) who has been a nun since 1969, but there are mostly lay practitioners.So all of us are now sending you positive healing thoughts, as I have, especially during the last few weeks.

If you object to this, I will take your name off the list, but I personally will in any case continue to think of you. Also, I will be talking to the abbess of Green Gulch, a branch of the San Francisco Zen Center, and my sister’s best friend in the next few days. They probably have similar practices: How would you feel to have them pray for you? Or some nuns in Nepal and Tibet? I can also arrange for that. Just answer: Yes or no.

With all my sympathy and warm thoughts: It could have been me who was struck by such a disease. Thank you for experiencing it so I don’t have to.

Gassho.

Karen
———- Forwarded message ———-
From: Garmt van Soest
Date: Sun, Sep 13, 2015 at 8:37 PM
Subject: Re: Prayers
To: Karen
Sorry for being late and short. You caught me in the midst of a media blizzard. I released a book, hurrah. More attention for my ego to thrive on!

I am very grateful for your prayers and your offers. I say this as a practicioner who finds his gratitude insufficient when stacked against the weight of the good deeds bestowed uepon me. I feel it an honor and a blessng to be in your prayers and those physically close to you, but I am not sure I can comprehend (and therefore accept) beyond that. I hope this makes sense.

Would it be OK with you to put your email on my site as an example of the near-critical mass of positive energy the world keeps sending my way?

Also, I see Matthew this weekend! Yay!

Garmt.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-09-30 18:21:462015-09-30 18:21:46Example of great gifts

What’s going on? / Numb

08/08/2015/2 Reacties/in English, Updates /door garmt

It is 1 AM when I finally close my weary eyes. I am utterly, completely exhausted. In the past few days I burned up the little reserves I had, working too hard, recognising the signs but pushing myself because I don’t ever learn. My eyes, interface to the world and thereby the only thing keeping me sane, twitch and shudder. I entertain the thought, not for the first time, that the ALS has spread to my eyes. Anyway. A night of good, uninterrupted sleep will do me good.

The first thing I notice when I am suddenly very awake is the pain. Second, the heat. Third, the bloated feeling, like I have swallowed a bunch of beachballs. My stomach and bowels are so full of air that my lungs have no space to expand. The breaths I not so much draw as get pumped into me by the machine are shallow, and I try to think if my heated body is the sign of too much carbon dioxide in my blood or the sign of a warm night. Out of the corner of my eye I can see the alarm clock, but can’t make out the time other than that it starts with a 5.
First clue. The headrest is tilted a few degrees too low. The combination of clock visibility and ingested beachball sensation mean I blinked a second too early when it was being raised last night. I was suspecting that a lower angle would result in air being pumped down the wrong part of my throat; this experience confirms it. Ok. I cannot change the headrest but I can belch and fart. As I start to do both, the pain is next in line to attend to. It has receded from everywhere to shoulder, neck and cheek; the latter, because I am biting it continuously because I am trying to swallow because my mouth is full of saliva.
As I work to find a way to stop biting myself and calm my breathing, I find out that there is no way for me to put my head and neck in a position where I can relax without choking on my own spit. It is still 5-something AM. Beads of sweat trace down my sides and join their friends in the pool of themselves under my back. Ok. So I will stay awake.
If I say OK a lot, it is because I need to realise it still is. Iris is away and I fear my houseguests will wake up no earlier than 8.30, when the breakfast I serendipitiously mistaken ordered for absent Iris will arrive. I’m looking at more than two hours of concentrated attention to keep myself from choking. As the minutes creep by I realise that the possibility that I can’t succeed is quite real. This is probably the first time that death feels so near. I take a moment to acknowledge that, think things over. I take stock of my situation. “But I have so much life left in me!” “Regrets? No big ones? Really?” ” Well, I guess it is like the planecrashthoughtexperiment. If this is it, so be it.” Next, I compose this post. Really??? I am facing death and turn it into a story? I watch my thoughts for a while, and come to a decision. I will not die today. Let’s focus on survival: navigate your breathing through the treacherous swamp your throat has become. 
My belief that I will not die is challenged a few times over the next thirty minutes. An alarm I never heard from the machine before makes me wonder if we plugged the machine in after yesterday’s nap. If not, this could be a signal that the battery is nearing its end. The mask is firmly attached to my face, if the machine stops I won’t breathe for long. My saliva thickens, becomes sticky, fills my mouth more and more. Hm. I cannot swallow in this position, and drooling into the mask will cause problem later on. I cling to the nerd’s bible’s motto: DON’T PANIC! There will be plenty of time for that later on, I have two hours to go still. I muse that it is actually a pretty intense thing, this ALS; even on a practical level I need all my wits to cope. Concentration slips, I get into a dangerous cough. And so on, and so on. 
At 6.30, Juel walks in. My inaudible coughing has woken her, and together with boyfriend Flo, coincidentally one of the most interesting and inspiring persons I ever met, she saves me. Telepathically guessing what needs to be done they restore me in less than twenty minutes. I consider crying from elation but decide their morning has been messed with enough. I’m left to evaluate what just went on, and reexamine the thoughts I had in the face of imminent death. Well, my first thought was of Iris, but other than that, it was mainly the ego talking. I am such a self centered asshole. Well, no news there. But… something irks. My self acceptance feels like a lame cop-out, and as I write, this entire post starts to feel contrived and lame. I face death and how do I spend the day? By blogging about it? I didn’t once think about the unfinished letters for Zoe. Equanimity is great and all, but my behavior is more like indifference. 
I try to console myself: Death wasn’t imminent, it was near. I stayed calm, I survived. I’m still exhausted, that is when you treat yourself the worst. Yeah. Maybe. Truth be told, I don’t even know what exactly I am trying to say, let alone achieve. I had hoped death would be more exciting? I wanted to get jolted into changing for the better, because it’s never too late? I revel in using words like equanimity? I don’t know. I do know that I am shaken and exhausted. Let’s get to bed, a night of good, uninterrupted sleep will do me good.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-08-08 21:22:182015-08-27 18:47:26What's going on? / Numb

Three O’Clock Blues

16/07/2015/2 Reacties/in English, Updates /door garmt

Every now and then, I wonder, I wa-wa-wa-wa-wonder, have I still got it? Do I still have it?

Have what, you’ll wonder.
 
And I’ll say, “
I was lying in bed last night, thinking back to that concert we went to. Janine Jansen was playing the crap out of that Stradivarius, it was really mesmerizingly beautiful. I started to zone in, and my brain got hit by inspiration particles. Now, one of these is good, but the way Janine was living out that piece of Bartok, I got hit by all of them. I remember one strand of thought, like a… it started with a memory of one teacher who was so furious at me that he shook, for something i had done over the weekend, which is, call him up at home and ask for an extension to some assignment, and he did not say it then, but he did say it now, after class, shaking with indignified rage, calling me “hondsbrutaal!!!”, or cheeky, malapert, the wrong way to be audacious, and i wish i had not just looked up the 24 translations because audacious kinda kills my entire train of thought for reasons that will one day become clear, so let us stick with rude, yes, i was being rude, and now, twentyodd years later, listening to and watching violins saw through music, this thought gets called up by an inspiration particle, and i ask myself, what is actually so bad about being rude? In a quick succession of epiphanies I come to a big personal insight that I want to hang on to, because hey, it might be blogworthy, that is how nice this thought is. Lacking a notebook, or muscles to write, besides, I am at a concert, please behave, I look for a mental note to remember this insight by so I can pull it back when I have more time, because right now, not only do we have music to immensely enjoy, we also have a million other inspiration particles to attend to, everybody’s talking at the same time, so I grasp for the core of my insight, being “Beleefd Brutaal”, because at the concert I was thinking in Dutch, but now, now being last night in bed thinking back about all this – in case you forgot, look back to the beginning of this paragraph, go on, I will wait here. Ok. Did you go and look? So, beleefd brutaal, that is not hard, because it is two b’s, and I have lots of memories about BB King (for instance, how my guitar teacher taught me to play along with the solo of track five of Riding with the King; apparently that track was BB Kings breakthrough hit 48 years before it got on the album that I got it from, which was released 15 years ago…), so I latch it on there and let go. 
 
I came home from that concert and told Roland my five mnemonics that I took away. He does not fully understand, which is good because it would have been creepy if he had, but now that i wrote it down to him in a draft email I can let go of them and my head is free again. 
 
Three weeks later it is last night, meaning, now, and because I can’t get no sleep I roam my brain for something useful yet enjoyable to do, and stumble across BB King. Right, that feels like a juicy thought. Get to work, brain! Work, work, remember? I have to spin a story around that insight, and maybe a good place to start a story is by remembering my time in New York, where I did nothing but work, study and jerk off, really, I don’t even think eating or sleeping made it into my top five of activities, because I was dead set on proving myself, so the minute I got to a new assignment, I looked for the brightest alfanerd (… somewhat of an oxymoron there) and vowed to know more than he did ASAP, hence all the studying, and no wonder customers loved me, because I did nothing but work and study (as far as they were concerned, because jerking off was none of their business), and then I got a 36% raise after three months on the job (which was a disappointment of sorts, because one client offered me a 100% raise if I came to work for them, which I didn’t, if only to have said no to a buttload of money, and besides, even what I was making before the raise was considered a shitload of money (note that two units shitload equal one unit buttload) by me and a pittance by other, real, New Yorkers) but hey, I was having a decent time, just no friends, except maybe Faraz and Sonny, and Myra and Matthew and Lorraine….. maybe I was less of a pathetic loser than I remember at first. So Sonny walked by the BB King grillhouse and saw that he was playing that night. What!? No! Yes. So we got to see the living (then, still) legend there. Cool, huh? Which tells you nothing about the bb insight l gained during my Bela Bartok concert. Read that sentence again. No, just the short one. Do you see the irony yet? Looking for bb at a Bela Bartok concert? Anyhow.
 
I lie there and see a myriad of thought fragments, insights, memories, songs, movies and dreams whirl together, slowly, somewhat majestically, into a thought castle that maybe a story could navigate. I walk through it several times, repeating the main themes of the story like I am trying to drop breadcrumbs in my skull, because if I do not, the castle will be lost in the morning. I have a strong brain but a weak memory.
 
I used to build thought castles in cooperation, and they were rarely about songs or insights or other things that made me tick, but building them with others, man, that sure did float my boat. Lots of little thought castles with lots of different people, or one big thought castle with a team. Of course, we cheated, because we helped ourselves by the three indismissable tools of the Consultant, which are; a whiteboard, powerpoint (or its equivalent, paper and a junior consultant) and excel (or its equivalent, a junior consultant). You have those three, you have all you need to bring thought castles into the world. Oh, and you need a voice, and operational motor neurons (no equivalent available). When we brought the thought castles into reality we sold them for insane amounts of money, or even better, we got paid up front to build just the thought castle for them, or in the very best case, with them. We called these thought castles “business case” or “strategic roadmap” and there was satisfaction in creating them, because they were valuable, or why else would a customer pay so much for them? Hey, everything good starts as a thought castle. The cure for ALS started as a bunch of thought castles. Zoe started as our thought castle in Berlin, of all places. 
 
Nowadays I build my thought castles alone, like Dr. Manhattan on Mars. I am getting better at it, but what is the use if I can’t share them? At most, I can show a fleeting glimpse. Bono comes onto the mental stage now, sings a line from Zoe’s song: “I want to trip inside your head, spend the day there… To hear the things you haven’t said…”. The first time I hear him, I think: Yeah, right, you inside my head, see my thoughts take shape? Buddy, you would get crushed like a western pedestrian in Bangalore rush hour traffic. Only when I repeat the story for the third time, so I can write some of it down tomorrow, which is now, does it strike me. That part of the song was about a completely paralysed classmate of Bono, who had not been able to communicate at all for the first ten years of his life, and then became a quite famous writer. When I realise this, I understand what this post is supposed to be about, which often helps, although not in this case. See, I wanted to give you a trip inside my head, but I did not want you to spend the day there. Man, this post is way, way, way too long and about too many things. But hey, wasn’t it Zarathrusta who said, “You must have chaos within you, to give birth to a dancing star”?
“, yes, that is what I would say, in the way that I used to, say, say things.
 
Did you get any of that? All of that? No? Good. That means I still have it. I still have it, and I am still here, even if this particular post is not particularly readable. I still have it – it just takes one full day to share even a small and unrefined bit with you. I am still here, and despite the fact that I am always surrounded, I get lonelier and lonelier. I have it. I still have it. And I am stuck with it. To quote Zarathrusta again: “Du grosses Gestirn! Was wäre dein Glück, wenn du nicht Die hättest, welchen du leuchtest?“, although… that is a bit rich, to see myself in Nietzsche quotes. But, I’ll leave it in, because as all Dutch readers know, I am a Rich Kid. Of Instagram.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-07-16 17:50:342015-07-16 17:50:34Three O'Clock Blues

Die Laughing

01/06/2015/10 Reacties/in English, Updates /door garmt

This post is not beautiful or nice. I started it to complain, and that is ugly.

I just got back from eight days in the hospital, to get nighttime breathing measured and assistive breathing configured. Let me start with miniblogs about why hospitals suck.

  • It feels like something is pulling hard at the inside of my stomach, because that is exactly what is happening. It is not a pleasant sensation. At home, the tube sticking out of my belly is always taped to my chest, but here, it dangles all day, which means the dangling end gets caught during transfers. I try to explain this but give up after a few tries.
  • Response time to the call button issometimes higher than my weakened sphincters can manage, so when the nurse finally arrives it is sometimes too late. She sees me and my wet lap and offers to put a towel over it. Answering no means she will leave. I need to literally spell out that I would rather not continue to soak in my own urine, and please could I have dry underpants?
  • One of the toilet visions is so degrading, with pain at every move we make and a total absence of communication so nerve-rattlingly dehumanizing, that I ask my visiting friend to take over their work and put me to bed. I just don’t want them to touch me anymore. Please. I know you need to and I know you are a good person but I cannot take more today.
  • I wake up, pain in my shoulder, I press the call button. The nurse asks how she can help me but answers herself: “Ah, you can’t say. Then, I don’t know.”. She walks away. I feel dread
  • She comes back. She has not read the communication instructions that came with my file but she tries. After a lot of fumbling we work it out. This is a theme that returns so, so often this week. I do not have the energy to explain, and suffer as a result. They ask, “Are you not well?”, and after a week I have memorized which nurse needs a yes and which nurse needs a no in response to get any effect other than “Ok, then!” and leaving me. The instructions were so clear. RTFM, I scream in silence.
  • The fourth time my leg slides out of bed, I trigger an alarm by wriggling the sensor off of my finger, as the call button is out of reach. For the next ten minutes, in an agonizing slow motion that pulls me apart bit by bit, I continue to slide out of bed, in a movement eerily resembling Mr. Bean, funny if it didn’t hurt so much. I look at the camera guarding me, but no one comes. I hear the alarm from my discarded sensor, but no one comes. Finally, with a loud thud, my upper body comes over the edge of the bed and my head hits the floor, ripping the hose from my breathing mask. Another alarm joins the cacophony, and I make the mistake of hoping that this alarm will be different, because it is not. After painful, desolate minutes during which I keep oddly calm, someone passing by in the hallway hears the noise and finds me.
  • The fresh doctor that examines me after the fall does understand the concept of yes/no questions, and is also the first person in this week of fuckups that I hear an actual apology from. When I finally get in front of the computer, I give him the details of the fall, crushing untrue excuses along the way, asking answerless questions such as, why were the guardrails down, and why were they not put up the first three times my legs were heaved back in the bed? Along the way I ask why my drugs have not been administered correctly for one single day, why the pharmacy of this huge hospital is still fumbling to even get them to my room, or why I get breakfast at 3PM. Yes, indeed, grave mistakes. Let us take the ultimate measure, and file an Incident Report.
Attenuating circumstances aplenty as to the why behind all this: the staff is new in this hospital, I could have done a better job myself explaining how to at least communicate with me. The nurses are all upbeat, cheerful, joking, patient, which is not easy when you work in a department where only seriously ill people come. But still, this is how my experience went. And what scares me the most, in my continuing fear of the nursing home, is the following two bullet points:
  • This was an academical hospital and everyone in my department must have treated loads of ALS patients before. This department had a ratio of one nurse per patient for sixteen hours per day and one nurse for two patients for the nighttime. 
  • A nursing home has one nurse for every ten to fifteen patients.
Anyway, enough ranting. 
 
When I did get home, I felt worthless. Not in the sense of, say, hung over. I felt I was without worth. Without value. Guilty to exist. Guilty about everything I did wrong, totally insecure about everything. Guilty about existing. That sort of mindset can be dangerous, because you start to act desperate. So when I find out that my close circle of friends is having dinner without me, I make the wrong move. I feel shut out, jealous, hurt, and knowing that I have nothing to get mad about (was I really expecting an invitation for a meal in an appartment on the third floor of a liftless building?), I whine and bitch, then catch myself doing it and stop. Close call, I could have ruined something there. I think. I am better now, I can see how pain turns into anger and escapes my body through destructive action, but as I write this, some twisted part of me wakes up and still wants to shout at them that I hope they choke on their perfect steak and drown in their fucking champagne.
 
Oh, you motherfucker, I moan to the disease. He grins, enjoying himself, whispers, hey, it is your personality, I just tickle it.
 
He is right, the motherfucker.
 
We take Zoe to the playground, I feel so horribly useless, I know better than to cry and draw attention, so I hold the pain inside, where it numbs and festers (hey, I may be at a low point in life, but at least I get to write pseudo-death-metal lyrics: “the pain inside numbs and festers” (really??)). The road upwards begins when the mother of another ten-month old makes contact by pointing out the extreme coolness of my wheelchair to said ten-month old. That ten-month old meets our ten-month old and a small nuclear bomb of cuteness explodes as they explore each others face with tiny fingers. On our way home Zoe is fascinated by a neighborhood cat, and I wonder, how come she so clearly recognizes a living thing from, say, the motorbike it is resting on? 
 
After a few nights in my own bed and my own environment I have recovered enough to take stock. Where am I now and what has that hospital visit cost me? Well, I am really getting to the last chapters in my book, that is where I am. I am also behind my monitor, almost all of my waking hours, in fact. Do I want to spend my last days like this? Do I have a choice? The challenge is still: don’t get bitter. Ok. Let’s give it another go. As for what this hospital visit has cost me: more than I care to admit. I have no idea how much lust for life I have left, but now I at least understand it is not infinite. And the burden I create for my loved ones is getting more and more difficult to live with. So, the hospital knocked some reality into me. I have always wanted my experiences to be as real as possible, so, thanks, I guess. Heh. You know, writing this stuff down is almost like Therapy? I start out with complaining and along the way something transformative pops up. 
 
Oh, as for the subject line, I stopped explaining them a while ago, but they are still relevant. Karma police, the song, expresses the quiet desperation I felt while writing the post, and the immature insanity of Die Laughing is appropriate for feeling worthless, and isn’t it Therapy?, too?
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-06-01 15:55:262015-06-01 15:55:26Die Laughing

Everything ready from the dark side of the moon…

04/05/2015/3 Reacties/in English, Updates, Work /door garmt

From: van Soest, Garmt
Sent: Wednesday, April 29, 2015 23:13
To: Everyone@Accenture
Subject: ALS update: Everything ready from the dark side of the moon…

A nice bit of trivia to start your day: Which movie from my birth year does the line in the subject come from? Don’t get confused with the 1973 Pink Floyd album, not even Close. Neither is it an Encounter with Google that you need to answer this. Just keep guessing, your Third guess is bound to be right. Come on, be Kind, give it a go, the answer to this riddle is right in front of you.

My brain has time to think of stupid little riddles like these while it waits for my eyes to hit the right letters. Riddles that, given the average age of Accenture employees, will most likely be solved by no-one, but hey, I am sure your brain is tickled, and if you are still eading, hello!! and welcome to another update from the ALS fighting front!

It has been quiet from the ALS fighting afront, that is, from me to you. The battle has been getting more and more personal, and I figured you weren’t necessarily interested in the behemothic Brasil/Kafka-esque bureaucracy I had to fight for six months to get the right electric wheelchair. I say this in full sincerity, starting an investment fund is easier than working with care-companies.

Which brings me nicely to a professional update. Qurit Alliance! Our investment fund is still gaining momentum. Five members of the Qurit foundation, four scientists signed up for the scientific advisory board, three seed investors, two fund management companies, one fund manager with the right experience and skill set, about to start the investor roadshow! I know, I wish we could announce the first actual investment, or the first fifty million, but we will get there, even if it is not yesterday. In fact, we are getting there. I hope to share an update soon that is guaranteed to impress you. Stay tuned!

The other initiatives have grown up and left the nest. For instance, colleagues from NY will participate in the Walk to defeat ALS again, as well as join the New Amsterdam City Swim. Michael Teichmann is still supporting MinE, and colleagues from our office in Washington are telling their kids about it. Ronald Krabben is still helping Prof. van den Berg with TRICALS. Bob is getting Dutch swimmers ready for the Amsterdam City Swim. There is now an official mailing list, see cc, maintained by timothy.long. Et cetera, et cetera. I just finally can’t in good conscience claim any credit for these activities anymore, as my ability to meddle, I mean, contribute, is somewhat small these days.

I can move my eyes, and with that, the world, but I don’t have a lot of other functionality left. It feels like I am slowly being frozen, and the thing I had not counted on, is that it is actually pretty hard on the brain as well. It is functioning as it was, but adjusting to such a limiting interface, as well as dealing with all the changes that a lifestyle without exercise, booze, travel, etc brings. Kudos for prof. Hawking, who just kept working throughout his ALS, but then again, he had fifty years to stomach what took two years with me. And I type a lot faster than him, too, so actually…

Speaking of cosmology, it is why I picked the subjectline like I did. I feel a bit as if the whole adventure of ALS launched me, right off into the stratosphere and beyond. I got to soar, fly, see the world from a perspective I had never seen before, enjoy the warmth of the sun and the momentum of the launch. Now I am travelling through cold space, freezing, eclipsed every now and then by a planet or something, which is why I sometimes take really long to reply to email or fill my timesheet. Gravity still binds me to earth, where everyone is still merrily living along. My transmissions are still received, sometimes a colleague visits by means of looking at me through a telescope. Or, that is what I imagine it feels like to them if they realize that inside the heap of body parts they are addressing is the… brain of the quirky energetic guy that kicked their asses in a discussion on that one project.

Wait, wait, don’t run off, c’mon. The thing is, we have no idea how this story will end. I am still open to any possibility, as long as it is a happy one. And so far, I am more happy than not. We’ll see if I vanish into deep space or, maybe, I reach a zenith, and turn into a comet, or perhaps a meteorite, heh! You might not be rid of me just yet.

One thing that helps to stay close to Accenture is to be in touch with the type of information that normally doesn’t traverse email. Yes. I am asking you to update me on office gossip, or perhaps just tell me how your day was, once or twice a year. Doesn’t need to be long, as long as the gossip is good, I will feel a real part of Accenture, still.

Ok. I have said more than enough. One final rant and I’ll sign off.

With talking and moving becoming somewhat impossible, I found myself retreating into the type of hobby/work I used to have at the point in my life where I was as clumsy in interacting with other people as I am now. That is, nerd around with technology. We try to hide it, but the ugly truth is, scratch the thin layer of good behavior off of a tech strategist, and you will find a nerd. I got the idea this weekend to draw a network/systems architecture map of my home setup. Now, I used to do this at several large ISPs in the early 2000’s. These companies had gone through so much M&A with subsequent rigorous rounds of layoffs that they had no idea what they were running and hired us to audit and find out. And, I tell you with a strange mixture of shame and pride, the resulting map of a conglomerate of various legacy network meshes that was the proud backbone of some major telco, it looked a whole lot more simple than my home setup. If you are one of the colleagues that visits me, and I ask you to put up some Thom Yorke, right after you connected to my wifi and found my streamer with Spotify Connect, which is neat because it separates control from source, giving the sound quality of my streamer while allowing me to control Spotify with my eyes using the desktop client, expect me to sigh as you have to use  the bubble upnp app running in the oracle virtualbox emulating android, telling my streamer to get the content from my plex home server, because as we all know, Thom Yorke might be the best musician in the world, he is not on Spotify, so we have to stream the FLAC straight to the Cambridge Magicstream, right after you turned down the volume with the Harmony app on my phone. And that is something as simple as music. Wait till we get to printing! Let’s just play a record instead. And if you are of the average Accenture age, a record is a black flat round thing that, long before you were born, was the Spotify of its age, just without a shuffle-button. Oh, the stories this old man could tell you!

Thanks for reading, ‘till the next,

Garmt van Soest
Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

 Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-05-04 20:30:162015-05-04 20:30:16Everything ready from the dark side of the moon...

Tattoo stories part three

21/04/2015/in English, Updates /door garmt

My first one was just the desire for a reminder that I was once the type of person that would get one.I was the first of all my friends to get one, my sister was the only other person I knew who had one. Nowadays, one in four people gets one. 

This is the story of my latest and last tattoo. It should be the story, actually, of the first time Iris and myself went to get a tattoo, but that is mostly her story to tell, and besides, her part of this story is way, way more interesting and beautiful, and I am an attention whore, so. 
 
I rationalized meaning into the shape of that first tattoo after I got it, because when people asked me why I had one or what it meant the real answer (I just got it to remind myself of who I want to remain, and it looks cool, I think) didn’t seem pleasing enough, not deep enough, not visual enough to pass the judgment of the asker. If I had a good story behind it, people were easier to approve of it.
 
My second tattoo had to be bigger than the first, of course, if only because the ex-boyfriend of my then-girlfriend just had a huge one done that I envied for balls and style. I had known the spot where it was going to be for years: upper left side on my ribcage, near my heart, because the first one was on an arm, which would metaphoriphysicalesoterically bring balance to the Force (muscles, arm) and my feelings (heart). Yeah, I know, I should have kept that thought where it has always been, inside.s The thought upon which the tatttoo was based was not half bad, though, witness the brief exchange I had in the tattoo shop:
(to girl behind counter) “Hi, I would like to get a tattoo, please?”
(girl, bored) “Where?”
(me) “On my ribs, here”
(she, wide eyed, audible gasp) “omgwtfREALLY?? In that case I am going to watch. So painful!”
…
(tattoo artist) “So how can I forever mutilate a part of the corpus that God gave you?”
(me) “So, just, um something to help me live in the present, I’m always thinking about the past or the future. I want to enjoy the now more.”
The tattoo dude probably had as little notion as I did, that I was in fact describing zen (I wouldn’t start practicing that before another three years). Good thing, or I’d have had an enso tattoo, yuck.
 
My second tattoo was bigger, had a more sellable story, took longer, was more painful. Third up was a whole arm, ten years later. Mu!! A story told elsewhere, in several parts, my megalomania knows no boundaries.
 
So the last tattoo, with the same artist as Iris. I figured, we just tell her our ideas and see what she comes up with, and put that on our body. I had mailed ahead my idea, being, the letter I in four ways. Inspiration is the most important ingredient for life. The Roman “I” means one, everything is one, like the buddhists say (and the Dalai Lama thinks that it is no joke either). I am always looking for myself, for I. And, duh, Iris is the biggest name in my life. So, four big letters I. Big ideas. Let’s see what she comes up with. Her first dea for Iris was huge, whole arm and part of her chest, so I figured my upward trend of size would go on. And then it beautifully did not. Look what I (heh) got:
 2015-04-19 14.22.02
Clear, isn’t it? Let me zoom in a bit for you.
2015-04-19 14.21.42
It took all of 47 seconds to put on, and I didn’t have time to feel anything. And here is the beauty. That letter i is actually Iris’s. The I of Iris. She drew it and then the artist inked it on me. We left the tattoo shop in a daze, Iris from having a vibrating needle stuck in her ribcage for waytoo long and me from witnessing her immorrtalizing something beautiful (sorry folks, still her story to tell). I did sulk for a bit about the idea of four not really showing up in the tattoo, until I realized that it was my fourth tattoo. Yes, I know. And in the ultimate feat of cognitive dissonance I splattered the idea of the four I’s across every tattoo that I had, because, that oneness, well, mu!!, a bit hard to explain here, but believe me, the connection is there, my third tattoo is the oneness I. Inspiration, it can come from anywhere, and it is realky the most important thing, and you can only find it here and now, making my second tattoo the I for inspiration (yeah, this one is a bit of a stretch). And for my first tattoo, is that not about the i-dentity I was trying to remind myself of? Circling back, to the last tattoo, the I of Iris, and can you actually see that the way she writes the i is pretty similar to a 1? Cognitive dissonance or not, she is my nr.1, or I want her to be, either way, she has to share that spot with Zoe now, and anyway, who else should I look to for inspiration but my wife? Fuck you, ALS, for coming between us, and make this tattoo the hardest one to live. Fuck you. I love you, Iris, and I wish our circumstances where different. Happy 30th birthday. May you enjoy at least fifty more.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-04-21 10:56:082015-04-21 10:56:08Tattoo stories part three

Drill a Hole in That Substrate and Tell Me What You See

14/03/2015/5 Reacties/in English, Updates /door garmt

With all my complaining lately, I thought it would be nice for a change to tell you about these wonderful presents I received lately. 

First, there are the keys. When the father of my father passed away at the tragically young age of 96, my dad found three shoeboxes of keys in his basement. Apparently, he had made it a hobby to collect cute old quaint little keys. He also collected just about everything else, so as a reminder to himself to take only the good traits from his dad’s character, my father took a few keyrings with him. He visited me the other week, to present my daughter and us with a gift: three keys from that set, each on a necklace, one for Iris, one for Zoe and one for me. It serves as a remembrance gift, to remind the bearer of me. Keys, you see, used to be my thing. As a kid, I took the keys from my mom’s purse, went outside, and started the car. I was three at the time. I don’t recall it myself, but wherever we went, I took keys that I saw and liked with me, often forcing my parents to drive back to friends with apologies and their home keys. So, as a reminder of my past, and because I found the key to Iris’ heart, Zoe gets a key necklace that was handpicked by her grandfather out of the stash from her great-grandfather. One of the most sensitive gestures I received this year. Thanks, dad.
 
Then, there is the book. Strictly speaking, this was also more a present for Zoe than for me, but… it feels like a huge gift to me as well. I write loads of stuff, but it’s all bits. Digital might be the future, but no USB stick has ever worked for the duration of even a single generation, while I have books that are four times my age. So, Judith wrote a book for Zoe. A fucking BOOK. Vera drew the illustrations, just like she drew our wedding invitation and Zoe’s birth card. I mean, a book. A book! A bookbook, as we are in the habit of saying when we try to signify something real and not redefined by a marketing budget. I really cannot say how incredibly pissed I am that she published a book before I did. Ha, no. We tried to read it and I cried at just about every other page. It is a picture book, the tale of a Lion, who hides, but is never invisible. It is the story of a Lion and Lione. It is the most touchable thing I have seen that I am certain Zoe will like and tell her about her dad.
 
Then, there was the epic holiday with epic friends. Given that we had an unbeatable history together of epicness, it is a pretty big achievement that we succeeded in adding yet another set of new high points to our movie-that-supposedly-plays-before-your-very-eyes-when-you-stumble-off-a-cliff-towards-your-doom-(only-to-catch-yourself-just-in-time-after-which-you-utter-whewthatwascloseIsawmylifeflashingbeforemyeyes). It wasn’t really a nice or relaxing holiday, I wouldn’t call it fun, instead, it was beautiful, in the way that a sad movie can be beautiful. We did our obligatory “Oh look, this cocktail is more expensive than my second car”-thing, but in all fairness, that was a Volkswagen, and starting it required a hammer, but still. We managed to enjoy a hot tub together, outside, with champagne, my first bath in eight or nine months. I cooked for and via my friends, Menko was not allowed to help, so I sighed “A general goes to war with the army he’s got” and eyetyped step by step instructions for Paul and Miga, and it wasn’t bad, even though the forestfruit-meringue turned into crumble and the melanzane was better when Iris cooked it and it broke my heart to see how little the average nurse knows about making coulis, but, anyway, we all enjoyed that dinner even if I didn’t eat any of it. We witnessed history at Bletchley Park, we cried together often, we intimately bared our souls with music and conversation, confessed our deepest regrets, debated that age old question again whether masturbation is jerking off or making love to yourself, we stared death in the eye and spat at her respectfully, we had a private piano improv slam in the best cocktail bar in the world, we were the best dressed men in the entire city of London, we took in the scenery, we solved shitloads of problems for the one of us who annoyingly had ALS, we loved each other in details and activities that an average marriage will never encounter. Ok, we didn’t sing, but we did fight, cry, pray, laugh, work and admire, like I said we should. I should point out the length to which my friends and nurse had to go to overcome the limitations one malfunctioning body puts on a group, but I cannot. Just reread that list of what we did and imagine doing that while carrying a drunk E.T. that is mumbling vital survival instructions in an E.T.-dialect that you haven’t quite mastered yet as you are from earth and E.T. is from wherever he came from.
 
And then, yesterday afternoon, an unexpected huge surprise. Zoe has been getting more demanding, in the way that Nirvana illustrated so charmingly, in that album that was about a baby too: here we are now, entertain us. And I don’t have a lot of ways to entertain her, and I can’t hold her well, so I really missed having her on my lap. She holds out for a few minutes at most before someone has to carry her away. Iris brings her to me and plays with her several times a day, and that is beautiful, but…  I dread the day that I am an uninteresting object to her. And on top of that she started to listen to nursery rhymes. I know, she is only a baby, but… my stereo was made for real music, dammit! Satisfactory epic win on both fronts yesterday. We strapped her to me and my chair so I could drive around with her, and the most amazing event occurred: she started to relax. Whether it was the driving or the record spinning on my turntable, she quietly enjoyed my company and the ride and then the guitar solos of The Black Keys. I recall one of the happiest times of my life, her first week, she in my arms, me playing her music, this very track actually, and I wonder… would she remember? Will she remember? On some subconscious level? I stop wondering and continue enjoying, this golden half hour with her, until the doorbell rings and it is time to get back to work.

 

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Down in Albion

04/03/2015/2 Reacties/in English, Updates /door garmt

why why what is god damn why does aaack. awful drooling from torture smells. every sound is like a dagger into my skull and there is so much noise i cant take it i gotta get away before fuck now i am angry and the only thing more frustrating than being unable to communicate is being unable to communicate when you are in a rage i cant even kick or scream everyone is torturing me i hate them. pain everywhere yet nothing hurts but everything is chaos and i cant think. i hate the world and especially the short circuit that my brain is right now. fuckFUCK. i wrestle free and ride to the most remote room.

in. out.
i am an island.
in, out.
deep, slow.
calm, at ease
smile, release.
present. wonderful. 
 
I have to work the mantra quite a few times before a smile appears and I feel release. Present moment reveals beauty in the noise. Why the heck is someone using a blender that sounds like an industrial jackhammer?
 
Oh, that’s right. Because my friends are trying to accomodate me for dinner. We drove all day in a rented wheelchair bus to this insane villa (with hot tub with hoist!) near Oxford so we could enjoy a potentially last holiday here. We even brought our own nurse, and Miga is blending the pear-and-blue-cheese salad so I can try and have a taste without choking. In the words of the famous poet Kiedis, and I quote from his better known work Can’t Stop: Garmt, (ever wonder if) it is all for you. Yet I exhibit clear signs of mental breakdown.
 
So I retreat, I breathe, I compose this post in my head. I cry, feeling like things cannot get worse, I get warm during crying, that is nice… wait a minute. Ah. I get warm from the contents of my stomach, which is flowing out of me from the PEG-tube which has opened as a divine reminder that things can always get worse. Cue Lou Reed, it’s a Perfect Day. I soak in my own acid and cry for help.
 
I had wondered lately if I am getting too soft on myself. I produce nothing. I create nothing. I do one or two professional tasks a month. I spend most of the time I do have on my damn gmail inbox. I hardly work on the most important piece of my legacy, the letters for Zoe. I know of patients in worse condition than me who run companies (yes, plural) or organise things and accomplish stuff. Why can’t I? Supposedly ALS leaves the mind intact, well, except for the 15% who get dementia, or was it 16%, because I forgot, ha ha. Why don’t I kick myself in the balls to start showing some discipline and get back to work? Treeway, MinE, Accenture, Qurit, they are all waiting for me. Or perhaps they are not. No one is irreplacable.
 
Kicking yourself in the balls does have its uses. I remember being depressed for some time, again, and being sick and tired of always getting depressed, so I kicked myself and bought a notepad and gave myself some homework: no matter how bleak your day has been, every evening, you will write down three positive experiences. You depressed asshole, you. Well allright then, I moped to myself. At first I was bummed to write down: the high point of my day was a sandwich for lunch. Not even a nice sandwich. Just a roll with cheese. That outdid everything my overpaying high-lifestyle job had to offer. A roll with cheese. As the weeks progressed, I noticed that my exercise was working – spending your day looking for high points is better than sulking your way through life. And more importantly, I started to learn what made me feel good.  Apparently, I had wired myself the wrong way, and I needed a stupid simple kick and some homework and some discipline to rewire. Anyway, bridge to the next paragraph, after months, food still made it to the top three nearly every single day. Food beats antidepressants.
 
Back to our villa near Oxford. After I had been stripped naked and showered and cried with and laughed at (without being able to retort, but it is really cold in here!, that is why!), we gathered for dinner. Menko was chef today, and as I have stated before, his cooking outdoes a dinner at any one-star and most two-star restaurants. I watch my friends enjoy, chew, swallow, EAT. I try to be happy for them. I try to enjoy the sight. I try not to choke on my bite of blended pear, and I fail. I try to walk the road which I am convinced exists, the way to experience this disease while being free from suffering, the road where you transform your mud into a lotus flower, but… it isn’t easy. I will get used to this. I will enjoy my friends’ pleasure, I will not feel bitter. But… this particular wound, not eating, is still raw, so it may take a week or two to adapt, maybe even in time before the next piece of my life dies.
 
It dawns on me. Maybe this is what has been keeping me occupied. The constant adaptation, mourning, frantic groping for control, wrestling with words like eindverantwoordelijkeverpleegkundige, etc. Perhaps I am not being lazy. Maybe a kick in my own balls is not the best course of action at this particular point in time. I share this epiphaneous insight with my friends, whose reaction is laughter and an overwhelming “Duh!”. Ok. Nick Cave appears in my thoughts again, with the same cynical-or-is-it piece of advice he gave me the other day, in a conversation I am still writing down. It stems from his aptly ironic and ironically appropriate song, No pussy blues. He dictates: 
That I must above all things love myself.
That I must above all things love myself.
That I must above all things love myself.
Ironic or not, I’ll take your advice. Thanks, Nick.

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2015-03-04 14:22:302015-03-04 14:22:30Down in Albion

Happy Holidays!

24/12/2014/1 Reactie/in English, Updates /door garmt

Hello, everyone,

I once learned an expression tres chique. It’s “and all that jazz”, and basically means, you know the rest, it is not that the rest is no good, au contraire, but let’s not bother each other by spelling it out, shall we? 
 
So, merry christmas, and all that jazz.
 
As a little present for christmas, I have created a new section on my blog. It is to be found here: B-sides, or you can click on the link in the menubar.
 
It is a bit much, and not even done yet, and I assume only the most hardcore of readers will get to mu and the subsequent enlightenment that you can now achieve with my amazing, straightforward, breakthrough methodology, priced for friends at the mere value of your soul, and by now even I don’t know where I am going with this. Completely sober, I swear. Anyway. Happy christmas reading. And all that jazz.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-12-24 19:43:202014-12-24 19:43:20Happy Holidays!

ALS is still here, but so am I

23/11/2014/1 Reactie/in English, Updates, Work /door garmt

From: van Soest, Garmt
Sent: Sunday, November 23, 2014 21:20
To: Everyone@Accenture
Subject: ALS is still here, but so am I

 

Hello everyone,

If you don’t know who I am or why I am emailing you, let me tell you an anecdote. The other week, someone asked me for my CV. With the arrogance normally reserved for young Analysts, I realized that the best answer I could give at that point was: “Just Google my name, that is easier.”

The last time I wrote to you, just after the birth of our daughter in July, I was still able to walk to my car and drive safely. That is, drive as I usually would, and whether that counts as safely is a point of much debate, but I digress, as I always do. Four weeks after that I was in a wheelchair, no longer able to drive or walk, buy very able to watch the Amsterdam City Swim. Nowadays I am pretty much helpless; I do not yet need 24/7 care but the list of tasks I can do independently shrinks with each last bit of muscle that gives in to whatever is happening in my motor neurons.

I had the intention to stay active and be at the office regularly, but the disease overtook me, and since Accenture is not a spectator sport I have not been around anymore. I am in touch, every now and then I email or see colleagues, or I receive a card or a gift, letting me know that I am out of sight, not out of mind. I keep on noticing how warm an organization our company is. I receive positive energy and love from ten corners of the world, and that gives me a lot of peace.

I was like you, dear reader, on top of the world an loving every minute of it. And if you don’t love every minute of it, hey, I don’t want to preach, but just imagine me for a second, as you type at your keyboard, whispering over your shoulder: “I was faster at that than you”. Or imagine me the next time you take those creepy steep stairs to the 14th, running past you by taking three steps at a time, so unprofessional in my hopeless attempt to undo my lateness for the next meeting. Or imagine me, the next time you are driving too fast, whispering over your shoulder again: “I was faster at this, too”. Or imagine, the next time you are presenting in front of an audience, me whispering over your shoulder: “Are you noticing how great it feels to be standing up?”. Or, if you want, imagine punching me in the face, because all that unwanted shoulder-whispering is really annoying,  and notice how satisfactory that feels, and grin. Imagine, anyway, John Lennon recommended it. You get what I’m preaching at.

The news isn’t all bad though, in fact, there are plenty of good things. Like you, I still take pleasure in pushing myself. My challenge is no longer as abstract as cutting a gazillion dollars of cost out of the operation of some huge corporation to fulfill their mantra of ever increasing stakeholder value. My challenge is to insert a joke into a conversation, when I have to type that joke with the right side of my left thumb at one letter per two seconds, which is a very interesting trick where you have to balance timing, length of wording and dexterity in finding the speak button before the conversation has moved back already to Syria and your remark about that magician falls flat. Or, your challenge might be to seek a thrill? No longer do I need to tire myself with parachutes, bungee jumps or expensive diving holidays to get excited; adrenalin floods me when I try to balance myself and find out that the muscle that held me upright yesterday now no longer works, giving me exactly one second to find a solution or mumble for help before I fall. I say this without a trace of irony or sarcasm. My challenges now are no less interesting now than those I had as a senior manager. Having said that, I am still not entirely certain I would recommend ALS, unless you want to lose weight so badly that you are really desperate. Ha!

And more good news. The reason, or excuse perhaps, for sending out these ramblings was originally to share updates about the fight against ALS. I just have a few projects left that I am actively involved in. Project Xavier, project MinE and Treeway are all progressing very well. Xavier saw huge attention from the press, raising the profile of the disease even further. Philips and Accenture are deciding if and how to market the product. In October, we had the international kickoff of MinE; I think we had organisations from fourteen countries in one room! Nadeem de Vree is still supporting the lead researchers at the UMC Utrecht. The Accenture Innovation Awards and the CIO day paid/will pay attention to the projects and to Treeway. Finally, for the Qurit Alliance, our ALS investment fund, we have made some big steps. Two fund management parties have been downselected from more than forty candidates, ensuring that we have the right track record, equity expertise, market position and investment experience committed to the initiative. Two is also the number of confirmed cornerstone investors. Two is also the number that, taken to the power of three, is my lucky number, so the coincidence is uncanny!

Well, time to go.  I would say a lot more, but it would come down to the same and I hate to repeat myself. I remain your colleague, even if I won’t get to see you or work with you again. This isn’t goodbye, it is just me repeating myself that I have had such, such an excellent time working with or for or just in the same company as you. Who knows, the future might hold some surprises for us. I will be fighting for a while to come, but as you can read the fight is getting more and more personal. Yeah, if I was ALS, I would try to get rid of me fast, too 🙂 

Thanks for reading,

Garmt van Soest
Senior Manager

Accenture Strategy
“Kicking ALS in the balls”

 

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Old Man

29/09/2014/3 Reacties/in English, Updates /door garmt

Dear Zoe,

Let’s get one thing straight: Your name is not Zoe, it’s Zoe-with-two-dots-on-the-e. Only people like myself or cousin Hannes are allowed to skip the dots.

Girl, there is something that I am about to say that counts as an insult unless you are eight months pregnant or a baby, which you are at the time of writing this (which makes me wonder, would writing as a term still exist by the time you read this? once upon a time we would say in Dutch “een nummer draaien” (to dial a number) when we called someone on the phone, and I remember a kid wondering what that meant, as we have not used phones with one of those turning dials in ages, but I digress, so) ehr, which is to say, you are a baby, not eight months pregnant, so here goes: Girl, you are getting BIG. You were born with average weight, and when the nurse came to measure you two weeks later you had grown so much, and when we first plotted you on a growth curve it was clear that you don’t follow those, you pole-vault them. Right now you are part of the biggest 2.77% of babies in The Netherlands. Good. I hate average. And I love you.

So many people love you. We received so, so many cards, gifts and wishes for you…Each of them a token of love and a gentle pang of guilt as I never send cards or bring newborn-gifts myself. Also, about 27 cards that said “told you so!! being a parent rocks!!”, which probably translates to “you were a dick when we got kids”. I think you have 47 stuffed animals, 3 bathrobes with your name embroidered on them, about 58 full sets of clothing, and a mystery tree. Yes. We received a tree as a gift but we don’t know who it is from.

A few years ago I snuck back to the farm where I lived for part of my youth. We planted a walnut tree there, wrist-thick at the time, and the bend at the base that I made driving into it with the lawnmower was still visible in the huge, enormous monster of a plant (trees are plants, right? please pay better attention at biology than I did). Everyone has an experience or story like this and I hope you get a lot of them.

Your mom, you probably know this already, but she is one tough cookie. Each morning I get into the shower and turn on the water and then I get a heart attack as the water is ice cold because that is how she left it. She does this not out of sleepy disattention, like me, but she voluntarily finishes her shower with ice cold water. Paul showed me a movie the other day of some super model, Doutzen Kroes, screaming “Look at her! And she just gave birth a few weeks ago!!! So thin!”, and I am not shitting you, but I really didn’t see that much of a difference between her and and your mom. Well, ok, I noticed Doutzen’s breasts were smaller.

You didn’t live at your first address for very long, your grandfather(s) moved us with the help of thirty (!) friends into the place where we live now, a beatiful appartment in the vibrant heart of Utrecht’s coziest neighbourhood. Vibrant because trucks drive by, and cozy because I couldn’t think of another metaphor for noisy. With the windows closed it is peaceful, but with the windows open, honestly, I lived in the middle of New York, and that was way less traffic noise than this. Well, to be precise, I lived in New York for three weeks, and when it became time to pay my own rent I moved to New Jersey (ask Paul for a nice anecdote about that barkeeper in that lounge). I walked right across Times Square each morning on the way to my overpaid job. I miss that city, each TV-series that plays there, like 30 Rock, takes me right back to it. But I digress, because I always do, and I whine about our new place because I have Jewish ancestry, I really love it.

Just a day after moving in we went to see crazy in action; a lot of people swimming through the canals of Amsterdam, raising money and awareness for a disease that will probably be harmless by the time you get to read this. And again, so many friends and family and colleagues were there… It was a special day for us and I just mention it here because the day was so wild, it shook up your mood so bad the days after that we had to start with Gina Ford. Now, Gina Ford used to be a drill sergeant for the Navy Seals, but she got fired for being too strict, so she became a nanny and wrote a book about getting your child to sleep. So far, my contribution to the mental work that goes into raising you was limited to the suggestion “why not use duct tape?”, which is really a solution for everything from leaky diapers to getting the pacifier to stay in your mouth or keep your arms from flailing too much, so I don’t really get why your mom did not follow my wisdom on that, butanyways, Gina Ford, your methods may be strict and cruel (to me, at least, because you used to sleep so peacefully on my chest, and now you are only allowed to sleep in your bed), but they work, it is good for you, you are really a happy baby now, even sleeping through the night, so… if you ever get babies yourself, it’s not a bad idea to dig her book out of the archives.

Oh, also, angels exist. And by that I don’t mean angelic behavior, there is plenty of that as well, like your grandmothers help or Jos showing up with a beautiful collage of pictures for our bedroom wall, or, I could go on, no, what I mean is people who briefly show up, show you something divine, and then they are gone. I never much used to believe in them and I don’t think I have an idea of a God, but I started seeing them, very sparsely, here and there. A few years ago I fainted in the best sandwich shop in Utrecht. I woke up and felt like shit for too long so an ambulance was called in. And the very moment that the ambulance guy walked in, grey and all smile, I immediately knew: I will be all right. How someone can do a job like that and give so much care to a fainted yup, I mean… Sometimes in life you will believe people are bad, and that there isn’t enough good in the universe, and that is dangerous, because then you start to act like you are expecting bad, and then you will get bad things indeed. So that ambulance guy was an angel (just like that nurse from the ER was, who treated me to attention so undivided I was reminded what zen was about, or Laura recently was, she won the war for us) and with that he grew my faith in humanity. It sounds a bit grand, but trust your old man, they are there, all the more so for you, starting with the ones on your geboortekaartje.

Speaking of Old Man, it is a song by Neil Young, and until recently I thought it was about some guy who is young talking to some guy who is old. No, it is actually about a young man talking to his dad. The most painful lyric heard in the past year is when he sings: “Doesn’t mean that much to me to mean that much to you”. That is one of my biggest fears; you may not care about your biological dad if you don’t remember him… By age 10 you could be sick and tired of stories about me, or have a whole new family. Oh, we’ll see. I hope you not only get to read these but that you will even want to. Meanwhile, I will keep writing. To close this first letter, my prequel if you will, others will read it but I might package this away for  when your first kid is a week old. Then you can look across generations; the picture below is a picture of me, one week old, next to you, one week old. Hold it next to him or her, perhaps we will be there with you, but if not, I hope this is a nice memory.

zoe

Love you more than I know,
Garmt

A few more pics; below here the picture of the Jos-and-friends-creation in our bedroom, friendship, Zoe at four weeks, my new tattoo sneak peek pt 2.

IXXI G&I

Collage of pictures from our past that brightens up our bedroom

Random friendship/galaxyguardianship picture

Random friendship/galaxyguardianship

Zoe drinking her milk

Zoe drinking her milk

Roots, bloody roots

Roots, bloody roots

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How deep is your love

06/09/2014/in English, Updates /door garmt

So John Frusciante used to play and sing that song as part of a Peppers show. Which goes to shw that even guitar geniuses can surffer from poor judgment. This is the first entry fully written and posted using eyes only.

 

Each time you go to Lowlands Festival you go for something familiar and something unexpected. I first went there, I think, in ’98?, as site crew, working backstage on odd jobs like driving trunkfulls of gaffa around or handing out rain ponchos to crew. I remember the disillusion when I went as a paid visitor for the first time; so much walking from parking to camping to mainstage to drinks, etc…

 

I got diagnosed with ALS a little over a year ago, just two weeks before the festival. Back then, nothing much was wrong except that I spoke a bit slower and I couldn’t throw my beer as far. Right now, 13 months later, I am waiting for the wheelchair to be delivered and I’m typing this text with my eyes. Temper fugit. So when my best friend Paul showed me two backstage passes for this year, I couldn’t wait to go there and carpe fucking diem. He had even called in a rare favor from his old friends at the on-site power supplier, getting us a gator.

 

So we went there and we had a blast. And the biggest unexpected thing I took away this year? Love. Everyone was so kind, so caring… I need help with a lot of things and that is usually not something busy crew is waiting for. My biggest fear is ending up as a bother to people, as an inconvenience, and not once did I feel like that, even though I constantly took time and attention from people who had a job to do. We showed up at crew catering ‘de kookvogels’, whom I worked with a few times, at the busiest time of the day, and all the chefs took time out to sit down and have a beer with us. These guys have seen ALS up close and that makes their warmth to me all the more impressive (would you want to be reminded?). I could have stayed there hugging these guys all weekend (which is slightly odd as close physical intimacy with sweaty unshaven men is not a regular hobby of mine, but I digress).

 

Later, stumbling onto the loading dock of the main stage, I was surprised again; two roadies put me on a dolly, pushed me right past the final frontier of Lowlands’ inner sanctum, yelling ‘he’s with the band!’ to get the security guard to jump out of their way. I had arrived on the back of the mainstage, right as one of the headliners were starting their set. The monitor-mixer gave me a glance and offered me the best seat in the house.

 

So much love and respect, from everyone working there, it was also reassuringly familiar that the VIP’s in the guest area ignored me alltogether; these are people who are too important to be nice, thankyouverymuch. In that same guest area we met one of the only real vip’s there; Camiel de Kruijf, without whom half the festival wouldn’t even be there. He’s a close friend of my best friend and made all of this possible for us. You don’t expect so many nice and caring people to work in the world of rock&roll, but there he is.

 

Since learning about my ALS I have tried hard to fight it; helping research (www.projectmine.com), becoming a partner in a company developing ALS drugs (www.treeway.nl), setting up an ALS investment fund (www.qurit.org)… The ice bucket challenge brings hope because it raises awareness and funds, which this fight needs. The love of my friends and strangers brings the energy to keep me alive and fighting. Thank you, Paul, and thank you, Camiel.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-09-06 09:57:152014-09-06 09:57:15How deep is your love

Tattoo Stories Part 1

30/08/2014/in English, Guest Author, Updates /door garmt

So I almost got divorced the other day. Let me explain. Me and my best buddy Paul were in this tattoo shop in Brussels (because that's how we roll/get down/boogie/out our secret gay love triangle/start our career as Dutch national soccer players/ah hell, I guess you know what I'm going for here/because I don't really/are you still with me/I was going for… oh, right, because that's how we roll/or whatever rockstars say these days/I haven't watched MTV Cribs in ages so you just have to imagine that I am saying something cool here, with a # or something) and there was this female tattoo artist there (her customer almost ran away after he saw me fall over (it's ok, the freshly tattoo'd arm took the impact and that already hurt so it was kind of efficient), she ran after him screaming "That doesn't happen to all our customers! He just has a deadly disease!", and she got him back so I can tell the next part) who was tattooing a customer that almost ran away and then we noticed just as Paul was trying not to scream (it is amazing, our guy was so soft and sweet and small but the moment he got a needle into your flesh he was super super intense (and you try not screaming when a tattoo guy gets intense)) that she had a portrait of Tom Waits tattoo'd on her arm (we even asked "is that him?" and she said "of course, who else?") and I of course had no choice but to propose to her but I am married and I am just realizing that Iris reads this as well, so. So, we went to Brussels and got inked together and it was cool.

 

I got my first tattoo about, I think, 15 years ago. At the time, I knew only one other person who had one; my sister. The question I heard most was: "Why did you get one?" Now the first question is: "What does it mean?", and if your answer isn't philosophical enough, beware. Gone are the days where you could wake up with a hangover and an odd itch on your chest, and discover a bird or anchor there, permanently (this neary extinct cultural idiosynchracy was nicely paid homage to in the cult classic "The Hangover"). So my latest tattoo has four parts, honouring the evolution of public opinion in the western world over the past century or so (I just made that up, but it's actually quite fitting). One part was conceived years ago, marking both a milestone of sorts in my development as a zen buddhist as well as a unique artefact of the friendship between Paul and me, as well as being a joke that is understood by very few and found funny only by me. One part was conceived months ago, and narcistically is about one of the greatest compliments I received, which I want to keep reminding myself of as I think I'll need what it stands for. One part was thought up on the spot and the prettiest part was made up on the spot.

 

Maria has kindly agreed to write a guest blog about the second part, the compliment, which is the rest of this post. I would give her a proper introduction, but this paragraph took me an hour to write already, and I'm about to throw this eyegaze thing out of the window, so Maria, the floor is yours:

 

A “thank you” rather than a farewell

It was almost 4 months after the first time I met Garmt. After several “milestones” had been reached within the ALS initiatives running in the company, he wanted to organize a get-together dinner to thank all of the people that worked with him in his effort to kick ALS in the balls. It was also a bit before little Zoe would come to life, so it was a good occasion to spend some time with the whole team, before he would take some time off to focus on his most valuable team, his family. And so, his favorite restaurant in Utrecht got reserved for the whole night, we (the “company team”) arrived around dinner time and the wine started coming smiley

 

What Garmt didn’t know beforehand, however, was that we also wanted to prepare something for him and, as the Dutch saying goes, put him in the spotlight (still not quite sure that he didn’t know, though – this guy seems to know everything going on around his teams). The plan was to make a piece of art on-the-spot for him. The idea was that each of us had a word or expression in mind that best describes Garmt. Our task was to *somehow* describe all these thoughts on a paper/artistic way and put them all together in a mobile that Garmt could take with him. Keep in mind that we are talking about business people that were asked to create art, and you can get a picture of how the “describing” part went; colors all over the place, glue around tables, and engineers wondering what is the best way to glue a candle on a horizontal position (true story, don’t ask). But, behind all of these improvisation efforts, there was something that all art in the world could not express clearly enough, and this were the concepts that people came up with to describe Garmt.

 

So this is why you are reading this post right now. When Garmt asked me to make this blog post for him, it was because he wanted to make sure he can remember all these words that people said about him and the meaning behind them. So I will be as analytic as possible about describing the word that I used, even though I know that generally he would insist that it’s best to say things in short points.

 

The word that I think of when I think of Garmt is the Greek word “θάρρος” (thárros). It is not easy to translate it in just one term, you could say it means “courage”. But it also includes a number of other things, such as guts, bravery, ardour, dignity and -possibly- a bit of arrogance as well (in a good way J). I was lucky enough to work with Garmt as my first manager in my first job, and these are all the things that he taught me and the reasons why I look up to him. He is fearless to cope with all difficult situations and he never gives up, needless to say. But he also inspires others to “go for” things and see life in the same way; it sounds like a simple deal but, if you think about it, it’s not.

 

You could see all these attributes of Garmt reflecting on his “team”, the people that were there for dinner at Utrecht that night. Garmt was the one who wanted to say “thank you” for our support, but I think -eventually- it was a “thank you” from all of us to him, for all the inspiration he gives us. Garmt also supported back each one of us individually through this course of time and, probably, he was not even aware of that.

 

What I will keep from this event is that it was meaningful and it was fun. It was a sober way to say thank you for simply being there. The “piece-of-art” may have not been the prettiest thing in the world but it is clear evidence of how one man’s courage can touch so many different people’s lives and the reasons why we will always be thankful to him.

 

As a closure, when we say in Greece that someone has “tharros” it means quite something. If you search for the description on the Greek wikipedia, “tharros” translates as “the strength that someone has so that he can cope with dangerous situations, either without fear or by winning over this fear”. And I believe that this is what Garmt always does.

                                                                       Maria – Garmt’s team member J

 

Tharros

The first letter of Tharros

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-08-30 21:01:042014-08-30 21:01:04Tattoo Stories Part 1

Little Wonder

01/08/2014/17 Reacties/in English, Updates /door garmt

Filled with little wonders, this first week.

 

Her age is measured in seconds and I manage to keep myself from fainting – just barely.

 

Her age is measured in minutes and she is lying on Iris' breast. I want to touch her white little arm but am afraid to, afraid that it will be too much, that something inside me will burst if I do. Shortly thereafter I feel her naked warmth on my chest and it's the best sensation I've ever had. I use a lot of superlatives but this time it's very simple: it's the best sensation I've ever had. A little later they come to draw blood from her and I realise for another very small fraction that she has her own blood, that she is her own human.

 

Her age is measured in hours and she is asleep on my chest again. She is dreaming, her eyes move beneath her eyelids and I see the emotions fly across her face. What is passing through her minds eye? Something serious, something funny, something to get angry at, something to wonder at, something tasty (breasts!), it al passes by in just a few minutes.  

 

Her age is measured in something between "this many hours" and "this many dayparts" and her lips and tongue flawlessly locate the nipple, right through the t-shirt. She begins to suck and faces one of the first disappointments in her life: a man. No milk to be had from my breast, sorry. I laugh like I'm on drugs – perhaps that's the hormones? Iris takes over and gets to work. Every young dad feels useless and powerless; perhaps this is why I have coveted breasts for so long? Iris's deserve an eleven by now.

 

Her age is measured in days. I am seriously considering to never blog about anything except her, her fingers, her neck, her crooked nose, the unique sound she makes when she sucks on her hand. Every little thing she does is magic. I always got annoyed every time some young stupid parent couldn't stop talking about their stupid child; luckily this is completely different. Com-ple-te-ly different. The next day, I notice with surprise that she shares some characteristics with the concept of a baby. I wasn't thinking of her as a baby but as something unique, a phenomenon.

 

Safely strapped to my chest in an intricate origami of elastic bands, I have her close to me and my hands free. This feels good! I move to get up out of my chair and hear a wet whisper: "Are you sure? Is that a good idea?". No. It isn't. I halt my attempt, defeated, the room gets dark, the voice that only I can hear continues its undeniable drawling lisp: "I thought three days of happiness was enough, so… I'm here again". The age of my ALS diagnosis is a few days short of a year. Its teeth nibble my earlobe, it curls up in my lap, continues: "It's not a good idea to walk with her. I would make you stumble. I tell you what, it's not even a good idea to be home alone with her. You see, Garmt, I've made sure you can't take care of her. And I'll make you feel that. And you know, don't you, that no matter what tricks you pull out of your hat, I'll keep her from having the dad she deserves. The biggest criminals can appeal for the right to see their kids unsupervised, but me, I'm beyond appeal. The only father-daughter moments you'll ever have will be through the mercy of others helping you. She'll only get heavier and you'll only get weaker. And now, I'm going to make you feel how love hurts." And I cry, I wail. Pain in my chest. I don't want to cry with her this close but this is too much for me. God, this hurts. So bad. Today is the first day that ALS hurts, gives me pain. So far, it was annoying, irritating, infuriating, interesting even, tiring, bruising, demoralizing. Today it hurts, in a way that no song or poem can describe. I don't even have energy or room to get angry or be mindful of my pain.

 

That takes a while to clear up.

 

Next day. Iris feeds her milk and I feed her music. A few hours each afternoon, as she snoozes on my belly, I play her some Steve Earle, some Black Keys, a bit of Bonnie Prince Billy, even that forgotten Springsteen album "Devils and Dust" (I cover her ears for the second track), a quirky CD by The Notwist, a country album Ben Harper made with his mum. Now, Aloe Blacc sings "Who can help me take away my sorrow / maybe it's inside the bottle", as I feed her. He's right; I am smiling again. Inside that bottle is Iris' milk, that I am also feeding to our daughter. Spirits are high again, but damn, that was a rough day, yesterday.

 

I go in to work for a half day to talk about the fund and evaluate eye tracking stuff (a post like this takes three days to type). I shame myself; it feels so good to be in the office again and experience some old productivity that I miss my opportunity to give her the daily bottle. That's a mistake I won't make often… She changes every day and I don't want to miss any of it.

 

Her age is measured in weeks; 1,05059 weeks at the time that I write this, to be exact. In a few hours, we will celebrate her first week-birthday; in proper style, with Dom Perignon and the last leftover piece of our wedding cake (style over substace; it's been in the freezer for two years…).

 

The official announcement and her name will follow soon – for now, you'll have to make do with just one picture:

2014-07-24 14.21.24

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Remember Sammy Jankins

12/07/2014/1 Reactie/in English, Updates /door garmt

Hello all,

 

A series of moments from the past weeks, a collage, if you will. The moment that keeps sticking to my attention, that I'm trying so hard to relive, is that moment in the ambulance, where I didn't have ALS for the first time in a year. So let me start off with a few of the moments where I didn't feel it but where I still had it.

 

Tom, I'm glad you pulled through for me. I really thought your best days were behind you. I mean, we both know the greatness of Real Gone, although I have never really forgiven you for planning that tour, your first and only visit to The Netherlands in my entire lifetime, in the same month that my sister got married in New Zealand, but anyway. Make it rain has long been my favorite song, no matter what grumpy "only his early work counts" assholes may say. (God, I will really go over the word count with this one). But, c'mon, that discgasm "Orphans" and that live registration….We both know you've got better in you. And when 'Bad as me' came out and I thought it was quite noisy I should have known directly. It took me a while, your music takes attention to beappreciated. I haven't really LISTENED to it until recently and as so often with you: listen through the noise and beauty awaits. I hadn't expected it to be all in the timing. Not just in the title song but pretty much in every track of that album. Your timing is unlike anything I've ever heard before.

 

The same goes for the rhythm that this drummer is laying down. Menko brought me to jazzclub The Standard and I am five feet away from this guy who is creating something which is probably, mathematically speaking, entirely logical (therein also the difference with Tom, mathematics that describe his music hasn't been discovered yet (except maybe by one guy, but then he went crazy)). The guy typing this for me is getting such a headache…imagine how I used to feel when i still wrote this. So that drummer, he is really swinging. I mean, you know when they say "I feel it in my bones"? Like that. But the first few songs, he just has this dead-pan look on his face. Jaded or bored? He's won five Grammys but his gaze says "just put your attention on the piano player please". But me, I can't help but grin like a fool. And then his drifting eyes lock with mine and all of a sudden it's like he realizes: you know, actually I am swinging pretty good. He's still looking at me and erupts in pure joy. I blush…There's a pleasure now that we both share, something intimate and at the same time really basic and for everyone to see.

 

Ok. A few moments that are shorter to describe.

 

I'm trying to sleep, my head racing over what he said or she said and what I should have said and I'm really concerned about getting something or not getting something and then I feel Zomer move because I have my hand on Iris' belly and immediately every ounce of my attention and care is right there. I have an insight: so that's how this is supposed to work. Kids deliver us from constant obsession of self and ego. At least for a split second.

 

As my friends cart me into the restaurant in Vinkeveen and help me stand and sit, casually remarking "Nein, das ist kein alcohol" to the wide eyed German tourists who are about to make a joke, I notice not for the first time that my loved ones adapt to the situation faster than I do. Ronnie is not ashamed to lift me. Stephan is not embarassed to undress me. Martijn is not uneasy about cleaning me etc. Then why am I?

 

I go for a beer with Paul in Utrecht. Someone remarks: "Hey, nice walking stick!". Damn right. Mahogany wood, crafted by one of the most exclusive woordworkers in Holland, my cousin Maarten.

 

I stroll through Haarlem with my friend Anne Jan.

"AJ?"

"Yes?"

"How often did you meet a woman and were naked in your shower with her, within 5 minutes of knowing her name?"

"….. not yet, I think.."

"Me, three times, this week alone."

Of course, I am cheating a bit. I am the only naked one and it's a strictly professional relationship between the nurses and me. But I have to try and give it a positive spin. Divine retribution follows an hour later, just before what happens in the next paragraph. I should have brought that cane.

 

So I wake up in that ambulance and I am trying to piece together the situation. AJ is right there with me, but I have no clue how I got here. I am calm and start to look for clues. I realize I don't remember too much. One of the first things that comes back is the idea that I have ALS. I think I ask for confirmation; this can't be, ALS is a really bad thing. The name of my blog floats to mind and I realize it's true. I start to cry; it feels like a bad dream just came true. God, what a nasty moment. I recall the name of my daughter, what a proud moment!, and want to tell AJ, but he is just out of reach. Next, I remember that Holland lost on penalties – when I offer that information, the medic tells me it is OK to stop talking.

 

What just happened, is a true "remember Sammy Jankins" moment. Did you see Memento, that movie about a guy with amnesia? In almost every single scene, he transforms from a happy and open individual into a man with a burden and a mission, when his tattoos remind him of what he thinks is reality. I am fine now, my memory is back, except for the fall itself. Four new stitches in my chin and another point scored in Utrecht-Amsterdam. It's now 0-2 because the first aid people over here talk to you and handle you with love (which I didn't feel so much in the Amsterdam emergency room). The moment I am trying to get back to is that moment in the ambulance where I briefly didn't know I had ALS. I remember the shock of realizing it again for the first time, but I can't get back to that blissful ignorance.

 

But hey, only bad guys close their eyes for the truth.

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Summertime ALS Update

09/07/2014/1 Reactie/in English, Updates, Work /door garmt

From: Garmt@Accenture

Sent: Wednesday, July 09, 2014 1:04 AM

To: People@Accenture

Subject: Summertime ALS Update

 

Good news everyone,

 

I’m still alive! If you don’t know me, in my case, that’s actually an achievement. I had wanted to subject-line this email “Partir, c’est mourir un peu”, but then you would get the wrong idea. I am not going anywhere. Of course, I am dying bit by bit, like that corniest of poems (in Dutch), but then again, so are all of you. Each project you finish, each toe nail that you clip and each thought you forget, pieces of us are left behind every day. So we don’t really die anyway, we are just being reborn slower then we die.

 

I’m pretty sure that paragraph won an award for most inappropriately faux-serious opening statement of any email you have ever read. Are you still with me? I was about to update you how we’re doing with kicking ALS in the balls. First of all, my official Accenture-approved business card now says just that: Garmt van Soest, kicking ALS in the balls. I notice as I dictate this that I talk a lot about myself; I should be focusing on making this not about me so much. So anyway, a few updates:

  • Cause. Project MinE is still going strong. We have additional sponsors; Mr. Van Rompuy, for instance (Accenture had nothing to do with this, I just think it is a cool achievement). The Accenture team, led by Michael Teichmann, is getting ready for the next phase: design, after successfully reviewing several technology vendors, together with the UMCU.

  • Care. Project Xavier is past the prototype stage. 2 weeks from now, you will see a big press release, so I won’t say too much further.Another Care initiative that we are starting is improving existing eye tracking solutions. It’s not as Sci-fi as Xavier, but we should be able to revolutionize an industry J Justyna Tarwid is leading the effort to create a low cost eye-tracking solution by helping the development of Click2Speak and integrate it with Eyetribe. Coders wanted – I think c++! Apply with me or Justyna.

  • Connect. The TRICALS platform has gone live! Another Connect initiative is to provide the ALS-fighting community within Accenture with a place to connect and collaborate. We have so many ALS initiatives that no one has the full picture – we have a document that lists most of them; click here to see it: ALS_Initiatives_Overview_20140709_External

  • Cure. Treeway is still going strong; in addition to this, Elmer Spruijt is coaching another startup working on ALS drugs.

  • Capital. Major progress here! The fund now has a name: Qurit Alliance! Check out the website: www.qurit.org; you can also find a recap of the investor day there. Best news of all: we have our first investor!! Right now, we have a fund creation specialist working with us to recruit and select the investment team that will ultimately run the fund. Our Accenture network has already delivered one successful candidate; if you know (people in) the world of private equity, please contact ralph.staal@accenture.com for a description of what we are looking for.

 

I will keep it short today, the guy who is typing this for me wants to go home. I have to warn you, this ALS thing is a productivity killer. Just the doctor visits alone: there’s the speech therapist and the neurologist, the physical therapist and the psychologist, the “revalidatie-arts” and the “dietist”,  the ergonomics therapist and the guy at our local council who is supposed to give me a disability parking card who hasn’t returned the past 27 calls, the lung doctor and the recurring MRI appointments and of course the placebo, I mean, the experimental medicine that is not doing anything so far, but which makes you stay a day in the hospital every two weeks. I feel like Humpty Dumpty; all the kings men… In January I sent more than 1066 emails; nowadays I’m happy if I get to 25 a week. Adapting to it is getting more and more of a struggle. I always tried to keep every single little promise; I’ve had to learn not to say “I will send you that tonight” or “I promise I get back on that next week” as I simply couldn’t keep my commitments anymore. That sucks, I still get so many offers for help, but I just can’t tie it together anymore. For everyone who is waiting for a reply: I’m genuinely sorry. I wish I could live up to my promise to ruin your nights and weekends with ALS fighting work 🙂

 

Geez, did you notice that? That almost sounded like I was starting to complain! Let’s see, what would a sage like Crocodile Dundee say? “No worries”, of course. You'll still see me around the office, come have a coffee with me. I’m still involved in the projects; even if it’s just a day per week. For the rest of the time, if only something exciting and life-changing could pop up that would radically change the way I experience life. Oh, wait… that’s actually on the agenda for….. 14 days from now! I gotta go, I have to practice not sleeping and panicking over the temperature of a bottle of milk!

 

Cheers all,

(a beer on me for those of you who got the futurama reference)


Garmt van Soest
Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

 

 

This is the link to the powerpoint that was attached to the e-mail:

ALS_Initiatives_Overview_20140709_External

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Encore

28/06/2014/12 Reacties/in English, Updates /door garmt

In the words of Shawn Carter, lyrical poet and creator of statements so true that they border on the mathematical, to mention just one: "I've got 99 problems but a bitch ain't one" (because I don't have a dog), anyway, in his words: thank you, thank you, thank you, you're far too kind. My last post, which for English-only readers has been translated and put to music by Denis Leary resulting in this song, unleashed such enthusiastic responses that I can't help but take to the stage again, grab that mic, drop it like it's hot because I can't hold on to anything these days, and spit down my next verse because that's what I do with excess saliva.

 

So how you feelin', G? Well, weak. I was trying to undo and tighten the velcro on my wrist-brace. Try as I might, I wasn't getting anywhere. Luckily, Anna was there to help me out. She pried it loose, tightened it with force I don't have anymore, and smiled the loveliest of smiles when she was done helping me. Anna is three years old. Then she gently touches the scar on my knee and asks: Au? No, it doesn't hurt. It's ok. Thank you.

 

It's been getting slower and slower, a keyboard;

my friends

it's not that i don't want to hear from you

au contraire

but i can't

move my fingers

fast enough to mail you all

In fact, I've been writing this post for two weeks, seriously, that's how slow it is nowadays. Although, truth be told, I did take some breaks between paragraphs. Ha! Only four more weeks before Zomer is due. The price of having the ability to swaffel is never knowing what being pregnant feels like… I envy Iris. I know a milder form of pregnancy; words and thoughts fill up my head and my belly and I can't get them out. How did communication get so difficult? Good thing help is on the way. Soon I will control a keyboard with my eyes. Interestingly enough, as an artifact of Dutch healthcare (note how I don't call it a healthcare system), the guy who designs my eye-control-solution is the same guy who sells it to me is the same guy who asks the insurance company for reimbursement IS THE SAME GUY who decides if it should be reimbursed. Governance best practice. Of course, he only sells one solution which is probably not the one I'm going to like best. But hey, it'll just be my only way of communicating with the outside world. At least our country pays for it…

 

But where was I? Oh right, pregnancy.

"We need a clothing iron."

"We have 2… "

"Yes, but they are 10 years old and broken."

"Perhaps they were broken because they were never used?"

"I'm buying a new one"

Ah, nesting instinct.. Cindy recalls this particular hormone: the only week in her life she ironed anything. Not that I'm complaining; if I can buy this nesting hormone and secretly feed it to Iris, the house will always be tidy and my clothes will always look beautiful.

 

"And the amuse for dessert is a small shake of elderflower." Somehow, the event where I was supposed to thank my colleagues got turned around and they spent the entire evening thanking me. We're in our favourite restaurant and the conversation turns to: how would you describe elderflower? I close my eyes and taste – the answer arises in my memory. Roadside. A small road somewhere in Limburg. I'm not even 8 years old, my big tall sisters are harvesting the little berries and warn me that they are poisonous until you cook them. Later, we taste the home-made elderflower syrup at dessert over semolina pudding. Youth is for storing pure experiences that creative and ambitious cooks can try to evoke later on in life. Imagine you never smelled a cave or a farm or smelly feet – how would you ever describe cheese? What would wine smell like if you had never raked leaves?

 

The youth of Zomer will be filled with as many different smells and sights as we can afford her to experience.

 

To conclude, here's a little riddle I wrote when we just got back from Mt. Ventoux, about a month ago already:

 

Not all paragraphs have to make sense on the first read though – I can already see you wondering, "What is this note?". Really, it's not that hard, it's a piece of cake. I'll give you a clue: it starts with Part II. That's where I'm at now – trying to make sure he can't get my soul. And Iris being here, that helps: baby, in this world of shit, you are it. It's all right. The next one isn't so easy though – jungle telegraph isn't a common phrase these days… Ah, Zomer, send me some lovin', I can't wait for you to come out. Even if I can't be there to defend you from some random bus stop boxer… you'll prove something to the world. Before we know it you'll be in puberty, you'll turn into a beautiful teenage witch. I dont think that I can resist… I'll stick around as a friendly ghost to help you out. You know what they say: if you're scared to die, you'd better not be scared to live. Now, on to Part I. Is this making sense yet or are you just waiting for it to end? Aw yeah (that's a free extra clue that actually messes up the schema). I'm tired, we  just got back from France – not that I did any work, it was all woman driving man sleeping. My job was just looking for the toll money to pay. It was such a fresh feeling, being out there on that Mt. Ventoux in the morning dew. I'm here to tell you about that whole ALS thing. As it turns out, that's not really funny. I almost always laugh but right now it's just getting annoying like nothing else, and that's scary, because if it can get annoying, what else can it get? Anyway, your final clue: remember that post "Life ain't pretty for a dog-faced boy"? Jesus can't save me, but the first full decryption will get a bottle of Dom Perignon.

 

Your answers in the comments please!

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Sad but true

06/06/2014/in English, Updates /door garmt

We are driving home and it has been a fine day. A beautiful day, Lou Reed would say. A Bittersweet Symphony, the Verve would say. Kiss me, Tom Waits would say.

 

We are debating Tesla vs. BMW. Iris makes a lot of good points about its impracticality and I realize I'll probably have to choose against the fancy and hip Tesla. I get so sad; no cool new toy. I meta-realize how odd it is: I can feel such sadness at a Tesla being "taken away from me even though I never had it", whereas the notion that 50 years of my life were taken away from me even though I never had them hasn't really made me that sad.

 

I think back to earlier tonight. A gathering of various Accenture people active against ALS. First time in 6 months that we have all the different strands together. Except for Lucas and me, there is nobody that has the full picture. We spend two hours going over everything we do. Proto-types exist that were mere ideas 6 months ago, contributors from Switzerland and the USA on the call, the Japanese working group, the stakeholders that we have engaged at the highest level of our company, the results we have achieved with TRICALS and Qurit, the big-data design we are making for MinE, etc., etc. Every now and then, somebody can't help but burst into laughter or otherwise lose his professional composure, when we all see how ridiculously serious the contribution is that we have made in kicking ALS in the balls. I have a brief moment of insight that my efforts to activate have actually not been pointless. A warm glow surrounds me.

 

But I'm still dying.

 

That's what I realize, a little bit more, driving home with Iris and debating Tesla vs. BMW. As if I had just been meditating for hours, I see how empty my comfort strategies are and how impossible it is to understand the notion of death. I just get, and then only ever so rarely, that it is something so bad you can't even really realize it. I hold most of my tears until we are parked and after 10 minutes I can talk to Iris. As usual, she changes my reality with just a few lines. Death does take everything away from you in the end, but that's too big to grasp. But you can feel the little bites it takes, and those hurt. Like that stupid poem of Toon Hermans. Sad but true.

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La Grande Bellezza

14/05/2014/in English, Updates /door garmt

See it if you can.

 

Conversation at the pool, enjoying the sun, earlier this week:

"Iris?"

"Yes?"

"Upon which set of values and principles should we build the rules and directives for the Raising of our Daughter?"

"That's simple. On mine. Saves us a lot of arguments too."

 

Also at the pool:

"One-zero."

Hm?

"One-one!"

Wtf?

"It's a soccer match in my belly, I'm just keeping score".

Later that evening we want to watch a movie and she's just all over the place. Womb. You get the idea. Iris places my hand on her belly. A minute later her skin gets hard right underneath my hand and the movement stops: peace… Zomer snuggled either her head or her butt into my hand right through Iris' skin. We watch the movie like this and it is heaven. I am SUCH a SUPER PROUD DAD.

 

The next conversation happened, word for word, during dinner last night:

Y: "That Playboy party, it was…"

Me: "Let me interrupt you right there. You were at a Playboy party? First, invite me next time. Second, how did you get in?"

Y: "Well, my girlfriend at the time was in the magazine."

Me: "You dated a PLAYMATE?!?!"

Y: "Three, actually… when I was younger."

Me: "…"

Anyway, about that Playboy party: it sucked. And he's all grown up now, a father, 27 years old, and one of the nicest people I know. So if you want to date a playmate, just be one of the nicest people, apparently that works.

 

A few weeks ago at my birthday party. Martijn checks his smartwatch. AJ next to him sighs: "That's how things go nowadays. We look at our watch for an SMS and we look at our phone for the time.". Later that evening, all of us drunk, AJ will interrupt me when I finally manage to join the group discussion. It's such a gift – he knows he's probably the only one who can get away with interrupting me… like he's saying: fuck you, you may have ALS but you're still the same to me, and I get it. It's a gift. To the rest of y'all, if you don't let me finish my sentences, I'll set Bernt on you, he's still got the muscles I had (and more, who am I kidding).

 

I should write something more real. This macho stuff and writing down snippets of my life that make me pause aren't distilled enough. Like thoughts half formed, .

 

Friendship. A small example of a real thought half formed.

We take a separate room when we "discuss", but we aren't fooling anyone: we hate each other's opinion, each other's methods, each other's thoughts, we hate each other. To the core. Either that guy goes or I go. We fight all day and we fight all night and on the weekends we both call Matthew to complain about the OTHER guy; he wearily counsels us back to peace. For a day or so – and then it's Monday, and we fly to Dublin again, Alexander and Karsten and myself, and Alexander and me continue our fight while Karsten has to do the entire project on his own, shaking his head and wondering who ever put us together. Thrupoint did, that's who. It's the winter of 2003 and it's my last assignment with this company. One time I frustrate Alexander to the point where he screams "When I worked at Accenture, I had two Ph.D's to shine my shoes!" and I yell back that he should have stayed there and that someone please remind me never to go to a company like THAT. Over time, we thaw a bit; we discover a shared love for sushi and casinos, I watch the little guy (Karsten; I remember thinking "where's the rest?" when I met him) drink a pint faster than Alexander drinks a half-pint, we actually crack the case: our recommendations are implemented and deliver huge improvements for our customer, we never say it out loud but by the time I quit Thrupoint in April 2004, we have developed a respect which actually grows into love over time. Brothers in arms, type of thing, I guess – it was a pretty intense time. We don't lose track but we also don't see each other again except once in '06 – when I desparately try not to seem desperate about wanting to join the company they both started to work for. God, I was unhappy at Orange.

 

And then, their gift for my 37th birthday arrives: a day at the track with a Ferrari, a Lamborghini and an Aston Martin!! I get a call from that same old Karsten. Guess who he's standing next to? That same old Alexander. They still work as a team. And they're coming over. Utrecht, hide your sushi and your casinos! Old friends should never be forgotten – and ALS is a nice excuse to relive old memories and create a few good ones for the future.

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Fighting ALS: Another update

03/05/2014/in English, Updates, Work /door garmt
——– Original message ——–
From: Garmt@Accenture
Sent: Saturday, May 3, 2013 2:21 PM
To: People@Accenture
Subject: Update from a malfunctioning consultant
 

 

Hello all,
 
If you don’t know who I am, you are in the same entity (and therefore mailinglist) as I am, or was. If you do know who I am: Hi! Me again, here to update you about our fight against ALS, the killer disease that is starting to get sorry it took me in his jaws. It’s been nearly three months since I wrote to you all (I tried writing an Accenture blog; it’s too 2014 for me) so there is lots to update. 
 
First of all, congratulations to Joerie Nijhuis for winning the Corporate Citizenship Award 2014! In no way whatsoever do I feel envious of him (my ears burn as I type this), second place is a good achievement too, ahem. But corporate citizenship is about giving, and it feels like I have mainly been asking and receiving over the past nine months. I don’t intend to make every single update about gratitude, so let’s skip to a few updates about the initiatives:
  • Cure. Treeway is well underway to get their first ALS medicine ready for testing. IF it works, it may have a delaying effect on the disease, buying us more time. I’ve become an official partner in this company (with permission from Accenture of course) that was founded by Bernard Muller and Robbert-Jan Stuit. If you speak Dutch, you can see them talking about how it started: LINK TO PAUW & WITTEMAN
  • Cause. Project MinE is well underway; it is internationalizing fast (is that a word?) with Belgium, France, Portugal, the UK all in talks to join up. Yusuke Nirahara from Accenture Japan is working with a group of colleagues to bring the project to Japan; Rune Indrevoll from Norway is building the bridge to the Nordics. Michael Teichmann is working with the core team here in the Netherlands to define the functional requirements and technical architecture to analyze the DNA information of 22,500 people, and we are talking to the Welcome Trust about partnering up.
  • Care.  Project Xavier is a collaboration between an electronics giant and Accenture labs, led by Bob Koppes and Ray Pijpers. The goal is to create a device that enables ALS patients to control their home with their minds. Science Fiction made reality. High Performance delivered. Every single Accenture slogan is applicable to this project! The prototype right now can control lights and TV, is connected to a Google Glass, a Tablet app is being developed. 
  • Connect. Ronald Krabben and team have delivered the technology platform for TRICALS, an institution led by Prof. Van den Berg, aimed at connecting patients, treatment centers and drug development companies, with the goal to reduce the time it takes to test new medicine for ALS. The website is due to go live next month!
  • Capital. The biggest bang is yet to come. On May 19, we are launching the ALS investment fund (we will also unveil the new name on that day). Check out the PRESS RELEASE and the WEBSITE. If you know any interested investors, please feel free to send the attached email. We really have world class names and world class infrastructure behind this; it’s Impact Investing at its best! Or, as another friend put it eloquently, put your money where your meaning is! Don’t hesitate to contact me or Ralph Staal if you have any questions about the Fund.
 
A SPOTLIGHT ARTICLE was published right after my previous update; it led to a tsunami of responses. It is so overwhelming and humbling to see how engaged our global community is! Many people offered their support; if I haven’t gotten back to you yet, please mail me again. We will be very happy to enlist you ϑ. For those of you that have been put to work: sorry for taking up all your free time, your efforts are so diverse and so encompassing that I cannot even describe half of them here in this email. Special thanks to Amalchi from my favorite city New York. He rallied a big team and an impressive fund raiser to participate in the “ Walk to defeat ALS”. They are starting today; wish them well by shooting Amalchi Castillo an email. Later this year, I will be asking the same for our colleagues who joined the Amsterdam City Swim…
 
Then a bit about how I am doing. You noticed that I talk a lot about these projects because right now it is truly my dream and my passion to work like this. I won’t be able to do so for that much longer… That is partially because my hands have come to the point where I type only a few emails per day (Bas Tax is typing this for me, as I am shouting at him “NO YOU MORON, AMALCHI IS SPELLED WITH AN I, EVERYONE KNOWS THAT”), and one of these days I will get so clumsy that I represent an office safety hazard of sorts. Mostly it is because I am getting ready to be a father. I already communicate with our baby; I tickle Iris’ belly and she kicks in return. I’ll try to scale down as of July so I can enjoy an early retirement with family in our new house (whoever approved our new mortgage… oh, wonders of the financial world!). Don’t count on being rid of me completely; as long as I have a muscle to move, I will stay in touch.
 
Have a nice weekend everyone, thanks for reading this far!
 
Regards,
Garmt
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I won’t complain

23/04/2014/in English, Updates /door garmt

Take note – it’s a SONG, not a promise. And it’s such a good and subtle song. Listen it. It’s got nothing to do with today’s post though.

A selection of moments from the previous weeks

We appeared on Pauw & Witteman (big late night show in NL). The table was full with RJ and Bernard and they get the story across just fine. Yes, I was a bit jealous not to sit there myself but serving my ego is not the purpose of our joint quest, so I was really happy to enjoy the experience and see that it helps MinE. See the interview here (in Dutch):

http://pauwenwitteman.vara.nl/media/313165

An email from the facilities desk. I’ve ordered new business cards with “Garmt van Soest – kicking ALS in the balls” and that does not conform to our policies. Compliance police! After three escalations we get to someone that can approve this exception. His worry: well, people might mistake ALS for Accenture Learning Solutions… So now I get business cards that say “Kicking ALS in the balls” with a small asterisk after ALS and fine print at the bottom explaining that ALS is a disease and that I am not kicking our own solution in the balls.

Sitting with Menko on our terrace, I wish, not for the first time, that we had a personal biographer – someone ought to capture our conversations for future generations to exegesise.

“The world is getting smaller. One small walk through the city and I have to stop for breath three times…”

“Actually, the world is getting bigger. Things that were close once are now a whole journey away.”

I smile and feel elated. I don’t mind travelling. I was afraid I would have seen the whole world by the time I’m 40 and just like this I learn there’s new discoveries waiting for me, everywhere, on the way from here to the supermarket, everything. Later that evening Menko puts on my socks with such gentle care, not better but so different than Iris. It’s nice to feel loved.

Today

I was just in a room with a guy who started the meeting by saying “I am responsible for managing 22 billion pounds of investments and wrote about 950 million in checks for charity last year”. My biggest check to charity ever was less than 0,0002% of that. Two other guys in that room are together responsible for nearly 500 published articles on ALS and the like – and I write a blog. And I felt perfectly at ease in this setting. After all, I got the meeting together (with lots of help, but still). Right now I am trying to open the yoghurt I bought for breakfast. It’s noon and I’ve been up for 8 hours. I can’t. I grin. I can call a world class meeting but I can’t open my yoghurt. I almost laugh out loud! Cackling, I finally manage to stab the thing open with my spoon and get most of the yoghurt in my mouth. I’m also dressed to kill so the contrast between clochard-like mad behavior and million dollar looks (who said I was modest) convinces the old lady next to me that I am a devil, if not THE devil.

Henrik replies to the previous post: Ik wil ook niet dat het al voorbij is, voor jou en voor mij, en dat is het ook nog niet, voor ons beiden niet. (I don’t want it to be over either, for you and for me, and it isn’t yet, for neither of us).

Today, I also tip over a glass of water all over me and my precious suit. Twice. In one day. In a plane. Both times.

The guy is… annoying, but he is a buyer. We shake hands after an hour of negotiations: our house is SOLD! Time for a beer! Iris did it!! She bought AND sold our house… while being pregnant and overworked. Man this woman is… something.

Some other bits and bobs

It’s a shame that I can’t share too much about what’s going on in the fight. It’s really, really, really cool though. Check out our latest thing: http://alsinvestorsday.org/. The short version: give me 10 million and 8 years from now I’ll give you 25 million back, ah, and also a medicine for ALS. Smaller investments are also welcome. Do you know anyone who is interested? Put them in touch so we can invite them to join us on May 19.

And finally, Juel told the story of our last supper and you can hear it here:

http://alsdantoch.com/wp-content/uploads/2014/04/New-Recording.m4a
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Driver’s Seat

13/04/2014/in English, Updates /door garmt

The BMW 3-series. I do not use the words "masterpiece of engineering" lightly, but I am convinced that any German engineer with skill and ambition desires no greater legacy than to have contributed to the magnificence of this car. Fuck Ferrari's that break down and need a 10-thousand euro service every 3500km. Dominic drove his 320d for the first 80.000km without ever having to stop. OK, maybe he got gas a few times, but it was a diesel engine, so probably only twice. Let me share you some real facts about how this car is conceived. Every single material that is considered for the interior gets heated in an oven and smelled by super sensitive noses for unpleasant odour – you don't want your car to smell in the summertime. When a new prototype is done, they drive it to the top of Finland, leave it out in the snow for a day, start it up, and if the windows are not completely fog free within 90 seconds, they fire the guy who designed an inefficient air duct. Even when it breaks it doesn't break. This spring, in our 325, we had ignored a warning light for four weeks. That light was trying to tell us we were driving around with a punctured tire. For four weeks. Doing 200km/h with a pregnant woman behind the wheel in Germany. With a punctured tire. I could bore you with pages of ranting about the engine – the sound a straight-six makes… You get it. I love this car. I've had six 3-series + a 5-series (my first car!) + a Z4 (to great enthusiasm of the cop who fined me before I had ALS). It is the ultimate driving machine and I think it is made for steep, sharp-cornered hill roads on Greek islands. A local is driving it just ahead of us. He knows the road and glides across it like a metaphor by a very good writer would. God, I wish I was driving that car. But.

 

The Hyundai i10. I know next to nothing about this car so I have to speculate: it's engine is 3 angry chipmunks and a happy squirrel. You don't sit in it as much as wear it like a backpack. The break pedal is a sponge pressed against the wheel. Sneeze in this car and you risk turning it into a convertible, that's how flimsy it feels. In a delusion of efficiency, the youngest Korean intern designed the numberplate as bumper and crumple zone in one. Hertz employees need counseling each time someone returns one as it means they're still stuck with it. Cliniclowns at their wits end with always get a laugh, no matter how ill the child, by confessing they drive a Hyundai i10.

 

Right now, I could pulverize granite with the force my butt cheeks exert on each other. That's how tightly clenched together they are. I look to my left expecting to see a maniac, a monster, a lunatic behind the wheel of our rented Hyundai i10, it's simply not possible that the sweet, lovely, peace-loving girl I married has suddenly turned suicidal. No person in his sane mind would drive like this. Each corner we screech 2-wheeled makes me wonder if I should be religious; each minute we survive, still tailing the BMW, proves that DIVINE INTERVENTION exists. I mumble a prayer, a mantra and a koan at the same time and breathe deeply.

 

Iris, completely at ease and enjoying the ride, looks at me and asks: "am I going too fast, dear?". I ponder my options; answering a pregnant tige… I mean woman is always tricky. I settle for: "n… n… noofcoursenot".

 

"Good, because that BMW is driving me crazy".

 

She moves to overtake it and I seek diversion in existential dread. What happened? I'm going to die, will I leave nothing behind? Where did she learn to drive like this? What fucking lunatic ever gave her the idea that you can do this with a car? And then, just as we swerve back into our lane, our front bumper missing the oncoming truck by inches and our back bumper missing the BMW by millimetres, epiphany hits me: I have a legacy, and it is Iris' driving style. I'm sniff 'n the tears, all right.

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Who wants to live forever

06/04/2014/in English, Updates /door garmt

Thrown to the ground, a piece of flying fur from her skin marks where stood alive and well a micro-instant earlier. The sound of the gun is so loud and at the same time inappropriately muffled for a life-taking event as this. Vegetarians and readers with a weak stomach may wish to skip this post.

 

The young deer's curiosity was her downfall; her instincts to run away interrupted by her desire to look at us, look right at us, eye contact… Paul's bullet hit her less than an inch from target, in and out, right through her, killing her near-instantly, faster even than you can sigh at your smartphone. After sawing open her sternum at the butcher we'll see that the impact of the shot broke six of her ribs.

 

Four hours later. We're packed up and ready to go. Another hunter asks: "Did you enjoy that today?". Paul answers, truthfully, "Enjoy, doesn't really cover the full range of emotions". We all laugh (why??) and drive off in our rented super-expensive Range Rover that I can't drive (something about the small print in the rental agreement – what's next, I can't even get life insurance anymore?!), in search of our next big experience.

 

Two days earlier. We sip whisky and stare at the fireplace in this Scottish castle that we're staying in on our way to Winston Churchill Venison. Uncharacteristically, I have not done _any_ preparation for this holiday so it only occurs to me now that we are really about to embark on a hunting trip. Where we potentially kill living beings. I muse that I'm not certain if I want to lose my innocence. I don't think I've ever killed a mammal before – the seed for my 11 year stint as a vegetarian was sown when I didn't want to help kill our own chickens. I don't want to close my eyes for any part of the process that goes before products I consume (good luck shopping at H&M, then, or taking life-saving drugs that were toxicity-tested on monkeys (that is, all live-saving drugs) but I digress). And for that same argument, that my friends remind me of, right there at the fireplace, I remember that refusing to kill but accepting meat as food is hypocrisy. Nothing wrong with hypocrisy, nations are founded on it, but I've lost that innocence the moment I ate dear steak so I might as well kill the animal, too. At least the ones that we'll hunt have lived a good life, the kill is clean and quick, there are way too many of them around, etc etc.

 

The last thing Angus says before we get out of the car is "and now we are silent". The car door closes and I am in a different world, immediately. Our guide has been hunting for 17 years and got his first kill 13 years ago. He's 24 and moves completely at ease, like he's strolling in the park. There's an absence of sound around him that makes me all the more aware of each decibel I produce. His gaze scans the horizon and one of the first things I notice, besides the fact that I notice everything in high-def, attuned to nature like I have not often been before (see footnote 1), is that everything looks like a deer. A tree stump at the horizon – that's not a deer. That sound – is not a deer. A bush that – no, is not a deer. We creep for an hour, I see more than 65,536 colors of moss and this forest is so beautiful that the walk alone is worth the drive. Then, Angus points to distant fog – look, deer! We're lying when we whisper "ah, yes, I see". Half an hour of creeping and crawling later and I can just see them run off through the scope of the gun – not certain that I'll kill if I shoot when they move (see footnote 2), so we go home with 0 shots fired. Still, it was a full hunting experience – so close to nature, so close to life, so close to death, I struggle to explain, but at least I get it. You can hunt in harmony with Nature.

 

The next morning it's Paul's turn to carry the gun, and he will prove his true alpha once again by not just being the only one of us that fires a shot but also by gutting the animal completely with his bare hands. When we arrive at the young doe we snap a quick picture. We are sad to see the corpse; we're closer here than anywhere to life and death is a part of that, but it's sad. Angus appreciates that. This guy is a crack at what he does; he is honest, open, friendly, compassionate, he doesn't mention my ALS once but still finds the perfect way to accommodate it. I believe that he enjoys guiding people even more than hunting itself. Wow. And the unthinkable occurs – we teach him something! After taking out the intestines and organs we propose to bring back the heart. He's eaten kidney and liver but really, heart? Yes. Let's try.

 

Huddled around the electric barbecue we feast on breakfast made of venison burgers (from the fridge), together with Winston Churchill himself (Angus' dad) and friends. It's time to throw on our hunting trophies; the liver, heart and kidneys that were inside a live deer just hours ago sizzle on the hot plate. And damned if it's not true: Winston and Angus agree that the pieces of heart are actually one of the tastiest pieces of deer they've ever eaten. I've been at enough three star restaurants (see footnote 3) to know: this, right here, right now, is what ambitious chefs try to echo in their liquidized smokescreens of cuisine: purity doesn't get more pure than this. And we're hear to experience it. And I know that it's 99.95% luck that I get to enjoy this. Have you seen American Beauty? Sometimes there's so much wonderful in the world that I'm afraid my heart will burst.

 

The next evening, we call the ultimate alpha-male: Kenyon, my brother in law, who used to hunt wild pigs with a knife. If that sounds like a joke, you try it, and if you're lucky enough to climb up the tree fast enough after the pig has killed your dog and comes for you, you may just live through it. Pigs are smart, remember. Anyway, we proudly tell him "WE WENT HUNTING AND SHOT SOMETHING!!!!!!"; it takes him just one question to put us in our place: "Was it bigger then you? No? Then it doesn't count".

 

Enough for today, damn it these hurting hands suck. Greetings from Crete, I am here with Iris and Zomer, and this story was about our previous holiday, with M and M (who shan't be named as his customers read my blog and I can't just go around sharing his penis size and favorite brand of champagne – apologies for that, honestly) and P.

 

Cheers all, time for dinner!

 

 

Footnote 1: Let me explain to you what kind of a nature child I am. One sunday, years ago, I'm kitesurfing. I wipe out and hit my head, hard. When I see again I see all white with one grey line perfectly vertical through my field of vision. My first thought, and I wish I was joking, but sadly, I'm not, is: my monitor is broken. I am lying in the North Sea, on my back, surrounded by waves, looking at sky and a line of my kitesurfing gear and I think: that must be a broken monitor, that grey line looks like a broken VGA card. I have nice pictures of me riding waves looking all cool with cool sunglasses and a grin on my face and a tattoo on my arm and a hot kitesurfing chick in the background, but I am a computernerd deep down, or at least I was.

 

Footnote 2: It would have broken the flow of the story there to say the truth, which was "I could barely get my eye lined up with the scope before they were out of sight".

 

Footnote 3: Some people think I boast too much on this blog. That's because they don't know me well enough. I just share what I enjoy, I leave out the stuff that's really boastworthy. Picture me saying this with a straight face.

 

Footnote 4: Our house is for sale – know anyone who's interested?

 

Footnote 5: Did you realize how appropriate that subject line is?

 

Footnote 6: pictures below.

PRW_schotland-039

 

IMG-20140309-WA0000
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-04-06 21:11:572014-04-06 21:11:57Who wants to live forever

It’s like that

20/03/2014/in English, Updates /door garmt

and that's the way it is. The '97 remix, of course, with those cool dancers in the clip, the first time I saw a remix announced as "original artist vs remix guy", Run DMC vs Jason Nevins. That's the reason for picking this song, "versus". Today's match: Amsterdam vs Utrecht.

 

Amsterdam.

Monday afternoon. City center Amsterdam. I am in a rush, late for a wedding. Run up the stairs, slip and hit my head. Later on at the hospital they will put me together with superglue – I'm not joking, they use the same stuff you make model airplanes with instead of stitches. But that's later – right now I scream, I feel my head, and I scream, loud and urgent, and as I am screaming I realize that I normally never scream this long or loud, so I deduct that I am apparently screaming for help, from the people I saw just now. I glance around, they see me bleeding, they walk on. I struggle to my feet and exit the parking garage that I was in. I stand there for a while, in a busy street, trying not to bleed on my suit. Nobody helps me. I ask someone for a piece of paper. They hand me a used kleenex with an outstretched arm. This suit is too expensive to mistake me for a beggar, what's going on? I try to walk but I have to sit. I phone a colleague to help me, I sit bleeding some more, finally one Japanese woman comes over, concerned, hands me paper towels and leaves. I phone Iris and break down – I cry and ask her to come get me.

 

Later on I faint, right in front of the groom and learn that it's really bad luck to lie flat on the ground at a Chinese wedding. Pocket that tip people, you don't want to piss off a room full of people who were supposed to have a party.

 

Utrecht.

Thursday mid-morning. City center Utrecht. I am not in a rush, I'm riding my bike, wearing really tight G-star pants that are so impractical but hey I got to look good for all my peeps out there or insert some random rap lyric here, damn it's a nice day out, look at the sun, where was I – right, I wasn't paying attention so I topple over because my pants are so tight I can't stick out my leg far enough to catch myself. I am origami right in the middle of the street and trying to stand up, which isn't working, because my arms aren't strong enough to lift me. Push-up count: 0. Within seconds – concerned people everywhere. Someone lifts my bag, someone helps me up, two people are recommending me to take vitamins (wtf?). One guy loudly proclaims that I'm drunk, and I take a mental reminder to have cards printed that say "I'm not crazy or drunk, I just have ALS" because explaining it on a busy street is quite a challenge with this voice. I thank everyone profusely, decline the offers for a seat or water or a ride home (I have an appointment with a British French guy to go to in just a few minutes and I don't want to be LATE) so I straggle to the sidewalk and take some time to catch my breath and eat a banana because that's better than smoking a cigarette.

 

Five minutes later I have caught my breath and a cute couple that has been watching comes up to me. They will walk with me to wherever I need to go and they will carry my bike. Arrived at my destination the woman has tears in her beautiful eyes and the guy, inked from toe to nose-tip, says "I may have tattoos, but dude, you gave me such a scare, I feel for you, I had to help you". I'm even in time for my meeting.

 

Amsterdam – Utrecht: 0-1.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-03-20 22:02:382014-03-20 22:02:38It's like that

Kick it

16/03/2014/1 Reactie/in English, Updates /door garmt

She's taking "you gotta fight for your right to party" pretty seriously.

 

Ladies and gentlemen, we have a working name, and it's Zomer, Dutch for Summer, as that is when she'll be born.

 

And this mail is just to be a gleeful dad who just felt her kick for the first time, all the way through layers of Iris.

 

OK, move on now, nothing to see here.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-03-16 10:51:002014-03-16 10:51:00Kick it

Accenture Colleagues join Garmt van Soest in finding and funding a cure for ALS

18/02/2014/4 Reacties/in English, Guest Author, Work /door garmt

Time for another guest blogger. This time it's James Masters, who wrote an excellent article for Accenture's internal communications group. The article below was on the front page of our internal Accenture portal!! That means it's got more readers than the NRC Handelsblad!!

 

vansoeast_lglGarmt and his wife Iris are expecting a child this year.

If the world is to ever find a cure for ALS (Amyotrophic lateral sclerosis), then maybe it began the day Amsterdam’s Garmt van Soest learned he had the neurodegenerative disease.

Garmt, a senior manager in Accenture Strategy, was told in August 2013 he had ALS, also known as Lou Gehrig’s disease or Motor Neuron Disease (MND).

“It was a pretty bad diagnosis to get, but I wasn’t going to take it lying down,” Garmt said.

It wasn’t long before he made an impactful decision on how he would combat the fatal disease. As a matter of course, taking action in cooperation with his friends and colleagues in the Netherlands was a manifestation of Accenture on its best day.

Considering the reputation for scope and complexity of client engagements Accenture takes on, finding a solution to accelerate a cure for ALS seemed achievable to Garmt. He and Netherlands leadership quickly shifted into project mode. This wasn’t just Garmt’s disease to battle alone; they were all thinking big in their quest for a cure.

Garmt and his colleagues, including two other ALS patients with backgrounds in entrepreneurship and two biotechnology industry experts, targeted the global investment/venture capital community to fund drug development that can generate up to US$15 billion in returns. Working together, they drafted a strategy for an ALS investment fund, built a business case and operating model and wrote their “elevator” pitch.

Working through January nights and weekends on the plan with the core group, Garmt says it’s been almost like normal Accenture project work…“I’m so humbled by that show of support.”

There’s no money in the fund yet, but Garmt is buoyed by the sophistication and comprehensiveness of the developing effort. He notes “some pretty big names” from the investment industry are connecting with the initiative to offer coaching and connections.

vGarmt enjoys some time kitesurfing.

Fighting ALS on three fronts
As a result of his own ALS diagnosis, Garmt has added himself to the Project MinE initiative. Project MineE is studying the cause of ALS at the genetic level by mapping and analyzing the entire DNA structure of 15,000 ALS patients—the largest genetic research project in the world today. Project MinE is an initiative of two Dutch ALS patients in collaboration with the Dutch ALS center and ALS foundation.

Responding to Garmt’s call for assistance to Accenture’s Netherlands community, Michael Teichmann, security executive – Technology, is serving as the Accenture project sponsor and coordinator for Project MinE. Mobilizing Accenture’s strengths in big data, analytics and IT strategy supports Project MinE’s mission.

“At this moment we are scoping the challenge and defining how Accenture can best help Project MinE succeed in its objectives,” he said.

On another front, Accenture volunteers are working with world renowned ALS researcher Dr. Leonard van den Berg on an initiative to reduce the duration of clinical trials and thereby get ALS medicine faster to market by connecting patients, ALS centers and biotechnology and research firms.

Responding to Garmt’s call for help, Ronald Krabben, client technology executive – Technology, took on the role of leading development of a cloud-based digital platform and marketing initiative that, in essence, will connect all the dots in terms of accelerating ALS research, funding and mobilization toward finding a cure. The project launched with the help of US$106,000 in seed money from Accenture.

If successful, the implications are huge not only for ALS patients but for Accenture’s business going forward.

“This work can be used as a business model for combating other diseases,” Ronald said. “We are gaining traction with our Life Science group, but first we need to show this thing works.”

In addition to these initiatives and the impending investment fund, there’s another encouraging project getting off the ground. Ray Pijpers, client executive – Communications, Media & Technology, is working on a thought-controlled communications and home control device designed specifically for ALS patients in later stages of the disease. The resulting Project Xavier is finalizing a partnership with one of the largest electronics companies in the world to bring the device to fruition.

Correspondingly, the city of Amsterdam is backing the fight against ALS and has engaged in a number of supporting initiatives, such as a local “city swim” event that raised 1.7 million euros in 2013. The Accenture team raised 40,000 euros in donations and joined the swim with 40 people in just a few weeks.

All in a day’s work
While ALS may have slowed Garmt’s speech and motor functions, it has had the opposite effect on his mind, mission and ability to rally friends, colleagues and Accenture leadership toward a cure for ALS. In fact, his work toward a cure is now his work for Accenture. Currently, his weekdays are spent one day at home, a day at the hospital and three days in the Amsterdam office.

“My official Accenture role is now spending the rest of my life kicking ALS in the b****,” Garmt says. “Accenture is helping me any way they can. It’s really quite impressive and extraordinary.”

Garmt talks frankly that the average survival rate for ALS patients is three years, but he’s just as candid in his belief he can have a long life ahead. Thus, he made a conscious decision with his wife Iris, a neuroscientist, to have a child.

“ALS is a problem that can be solved, and we can contribute to that considerably,” he says. “With some luck we can accelerate finding a cure so that I can see my unborn child grow up."

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-18 23:51:592014-02-18 23:51:59Accenture Colleagues join Garmt van Soest in finding and funding a cure for ALS

Hey Brother

16/02/2014/in English, Guest Author, Updates /door garmt

So this one guy, it was at the crew camping of Lowlands in, what, '10? '11?, I think my BMW was the only car there less than 10 years old. This guy, dishwasher extraordinaire, he knew so much about music, blogs of one particular kind of soul music that I had never heard of, he was stoned all day, had been up all night washing those dishes and now we were sharing the morning sun, me with a pre-hangover, he with a post-hangover. Always such a sad look in his eyes, his girlfriend died and since then life was just a place to hang around for him, I hope Iris doesn't suffer that fate… so blissfully unaware we were then. She (Iris) was already cooking and serving for 800 security guards that day and doesn't this sound like a Tom Waits song already, but that's not the point. The point was, this guy claimed Paul Kalkbrenner, you remember, from that endless summer feelgood hit "Sun & Sand", that Paul Kalkbrenner comes from a long and distinguished family of composers and should be considered a musical genius. Paul Kalkbrenner, a cheap nothing no content trancetechnodance (I don't know which brand of electronics goes with unt unt unt iik), a musical genius? Yeah rite. He's just like Avicii. Whom I also never thought much of until I heard the song my sister Reneke sent along with her guest blog. Avicii is a musical genius and he writes excellent lyrics. Ladies and gentlemen, I present to you, the first Guest Appearance on this blog: Reneke van Soest-Tompkins.

 

 

(so in case that was too cryptic, anything that follows in this post was written by my sister Reneke)

I’m shuffling through the maze my house becomes in the pitch black of the night, looking for the bathroom, when I realise it’s after midnight. It’s my birthday. My 40th birthday. Any sane person would think of parties, presents, those grey hairs – I think of Garmt. My brother Garmt, who looks so much like me, who understands so much of my world, who may never see his own 40th birthday. My “sister” Iris, with the ductile strength of willow, the courage to create life, who radiates love. All I would like to give them is time, together. When I came to Holland to give them time I was expecting to do the things the Dutch don’t generally ask or offer – the dishes, the laundry, the groceries, the rubbish. As a country, the Dutch aren’t very practically helpful, really. Good at moral support, good at talking openly, definitely. Though some aren’t even doing that – turning away, not being able to cope with illness. The ultimate individualism, not realising that individuals are in a schroedingers box, and only add meaning to life when someone who cares opens the box. Anyway, I digress. The dishes, the laundry – well, how wrong was I! What I had to offer was two hands, what I walked away with was inspiration, of the epiphanic type. I’ve felt the need to let you all know what it is that G is doing – I suspect very few people know the totality of his fight. He won’t, as he’d consider it bragging. He’s not a bad bragger, but knows where the lines of social acceptance lie 🙂

 

So. G makes the locally near-infamous “think big” looks like detail managers. Despite confronting a death that is comparable to being buried alive in your own body, he took a few steps back and looked at ALS. And again. First, he needed the right treatment; two weeks of frantic googling with six colleagues and friends brought to light every single trial and drug in the pipeline in the world. Then, he needed a place to store and share that; Ivo created a wiki, that is a comprehensive overview of causes, treatments and hypotheses around ALS. I’d conservatively estimate that the input to the wiki cost about 800 man-hours. Started thinking about a dashboard, a way to keep up to speed with worldwide developments on the ALS front. Speeched for the partners of Accenture to rally them. The first partner started talking to the professor about connecting researchers by inventing or implementing ways of making data sharing between patients, doctors and researchers better, with the aim to get clinical trials happening faster.

 

Then, he tackled the cause of ALS. Within weeks, he had found likeminded fighting spirits, and started having input in and support for Project Mine, where genome data will likely find new areas of investigation to find the cause of ALS. Tagging onto that Ivo started building a visualisation model in his spare time – think mind-map, but one that shows exactly what we know and don’t know about ALS, which shows all researchers exactly where their detail fits in. With info, cause and connections to speed things up covered, G turned his attention to a cure. First, with a few friends who dug into the details and papers to create a hypothesis about the cause, trigger and progression of ALS. Then, by jumping onto the bandwagon of Treeway, a company that invests in a unique way of finding a control or cure for ALS. But why stop at one company if you can call ten into existence with the right combination of business sense and academia? It’s attracted approval from people who’ve been managing billions – and better still, they’ll be running their first set of drug trials soon. And then there's the project with the electronics giant, and the attention-grab of Richard Branson, and… Finally, to ensure he had everything covered, he organised a workshop for a small army of MBA graduates to tackle ALS as a business problem. While his motor neurons were dying at terrible speed, he energetically and charismatically covered information sharing, finding a cause, finding a cure and speeding up the finding of either. Even if he really retired now, he still would leave an unprecedented legacy. For someone to fight like this, to spread wings around ALS in totality and make it fly, that to me is truly inspirational.

 

Don’t get me wrong, my bro is no saint. Believe me, I know – some things are hard to forgive, even if bigger people have already done so, even if they’re understandable. Also, for some of the big projects (Project Mine, Treeway) he’s "just" jumped on a train that Bernard and Robbert-Jan had already put on the rails. And of course, the fight means he isn’t spending enough time on things that are also important. But he’s doing it consciously, with deep deep feelings, and as far as fights-for-life go, this is EPIC.

 

He struggles to claim any sense of ownership of it – he isn’t doing that much of the work, really. Does the all-weather superglue of the spiderweb claim ownership of the web? Yet without it, it’d be a bunch of free-flowing or tangled up wires. He’s the connector, the catalyst. Maybe the short burning push of the Apollo rocket, allowing a man to stand on the moon over 4 days later. And, no I won’t put in links to that seedy man-on-the-moon or yucky he’s-my-inspiration song, despite this blog heading for a disastrous lowlight in the number of song references. But I do have a song reference for you. After dropping my boys off at school, I sat in the car in traffic listening to bad romance song after bad romance song. Family is so important, especially when you get ill or grow old (they already know you in nappies) – yet it’s not cool, especially in the individualism society – so I sat cursing the fact that nobody is making songs about familial love, as opposed to gang love or sex-based love or power struggles of all sorts and varieties. Then, with karmic timing, a song came on. It may not be the intense musical high-stand of Hallelujah, but it was so right for the situation, it touched me. I couldn’t see the road anymore and pulled over.This one, G and I, is for you, my brother and sister.

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-16 23:22:562014-02-16 23:22:56Hey Brother

So how are you all doing?

09/02/2014/in English, Updates, Work /door garmt

From: Garmt@Accenture
Sent: Friday, February 07, 2014 2:58 PM
To: People@Accenture
Subject: So how are you all doing?

 

‘coz me, I’m doing just fine. Mostly. I’m feeling a little sick these days (ha! – just a small flu).

 

If you joined recently, I’m a guy with a funny disease that sends out long updates on how I don’t intend to have my life cut short. You’re perfectly welcome to ignore my ramblings.

 

I was always fond of my job, but I’ve really come to love it over the past months. I never understood managers who said “I’m so EXCITED about this new whaddyacallit (strategy/product/gizmo/organisation/whatever)”. Yet those are exactly the words I’d use right now – I’m so often so EXCITED about what we’re doing… The investment fund Marc Dijks is helping us set up, the research institute that Ronald Krabben worked with Prof. van den Berg on, project Xavier that Bob and Ray are taking all across the world, and then there’s Treeway, the biotech start-up that Edwin is coaching, who are going to bring more ALS drugs into a clinic in one year than the whole industry did in five years, etc etc.. I was compiling a list of everyone who have helped to get us this far by spending their weekends and nights (please stay chargeable people) and I came to more than 60 names so far. And that doesn’t even include the 40 of us who joined in the City Swim. Man!

 

As an example of how this goes into action let me tell you about a meeting we had with the team of Project MinE, the largest genetics research effort in the world, aimed at finding the genetic roots of ALS. At the first Accenture-MinE-meeting, I understood exactly the first 24 seconds of their presentation about GWAS imputation in WGS data. Imputation, is that even a word? Smart minds at work there…! Luckily, we had brought our Enterprise Architect with a Ph.D. in DNA data analysis (this is not a joke), so she could follow, but the rest of us were as the popular song from Led Zeppelin goes: Dazed and Confused. Then we asked: so what are your challenges actually? What would you need to make this project go any faster? “Well, we have some data quality concerns, and our storage system takes three months to just download the DNA data that we received last week (this is also not a joke), and we are figuring out how to get different parties across the globe collaborating on this project, and data privacy is a tough issue with DNA from so many countries, and why are you Accenture guys smiling like that all of a sudden?” Ah, because this happens to be right in the middle of what you guys do best. Isn’t that convenient?

 

At first, an incurable disease is like ‘well, crap, that’s it then’. Like any unsolvable problem, like trying to attain world peace, no use trying. Best to go sit on a mountain and enjoy the life that’s left. But every now and then somebody goes “If only there were something I could DO?”. And then I get to say: well, yes, actually, here’s an action list, I’ll put you down for these fourteen items, shall we, and don’t be late in delivering please, or Lucas Fung will be chasing you. My old MBA class started to chip in and now there’s no expertise we don’t have access to. And with all those small and big individual contributions we are really getting somewhere. I quote Prof. van den Berg, the biggest mind in ALS, who says: “Accenture is just what we needed!”. I quote the 800mln-fund manager that saw our first teaser for the investment fund: “Well. This is unique. Would you like to house it under my company? I’d love to be a part of this”. And I could go on and on. We’ve got so much power for change inside of us, inside of this company. OK, I’m getting a bit new age here. Sorry.

 

I do miss the customers though, now that I spend my time on these things (some people are never satisfied). Let’s get that fund up and running so it can be a worthy Customer.

 

On to a more personal note. If you see me in a sweater it’s not disrespect. I’ve known Javier for nearly 10 years and last week was the first time ever he saw me dressed in something else than a suit. But, cufflinks and buttons take a lot of time with one hand (especially the one on the sleeve with the working hand). Right hand is still working but getting pretty weak and clumsy. Therefore, a word of caution: Sit across from me in the restaurant and you have a serious chance of having my soup all over your plate. Oh, and if you see me around the office carrying a Mac, it’s because I’ve decided that life is too short for a Dell (sorry Xander). And I’ve got a Stephen Hawking voice! Only my artificial voice doesn’t sound like Stephen Hawking, it sounds so much like me that most people that hear it at first don’t realise it’s a computer talking. I don’t need it just yet but it might mean that you _still_ have to listen to me even if I can’t speak anymore. Ha!

 

Enough joking now. Kicking ALS in the balls is good fun; this paragraph is serious. For the next few months you’ll still be seeing me, 2-3d/wk in the office. Then in July and August I go on a short 80% retirement break (I’ll call in sick, heh). Because, this summer it’s time for the only item on my bucket list to get ticked off. Iris is planning to give birth to our child on July 22, although the doctor doing the echo/sonograph said that the kid looked like he/she was holding a phone to his ear and was trying to figure out how to speed up this process of pregnancy, so who knows! … enough joking. I’m so without words when I talk about this topic.

 

One last thing. I managed to dent the most expensive car in the Zuid-as holding the best lawyer of Europe (in 2011 and 2012 at least), just the other day. Don’t ask me how it happened but the end result was that her whole department will be joining the Amsterdam City Swim this year. Time for us to start practicing – no way that lawyers are going to outswim us!

 

Cheers all, keep on contacting me if you want to join the fight!

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-09 22:28:482014-02-09 22:28:48So how are you all doing?

She likes to move

07/02/2014/in English, Updates /door garmt

People ask me how come I don't write about Iris so much anymore? Well, that's simple. Like the christian god, I'm jealous, so I want to keep her all to myself. ALL FOR ME MUHAHAHA!

 

Well, that, and that I have two diseases (note – not the flu). But let me tell you about the best moment of 2014. It's a bit cliche but it's true.

 

Nekplooimeting. Yes, fuck you, Google Translate, nekplooimeting. I'm not even going to try. I think it boils down to: ultrasonography. We went there for our fourth one, and you know, if you've seen one, you've seen 'em all. Is what you think for the first 25 seconds. And then your… child… pops… up… on…. thescreen. WTF. I'm in love. With pixels. I haven't been in love with pixels since I first managed to execute '10 print "hello" 20 goto 10'. I'm in love. The pixels move and the kid is, what's (s)he doing, jumping? Now (s)he's eating? The thing is 13 weeks old and already has a stomach and a bladder? It's scratching its head? Or is it mimicking holding a smartphone to its ear?

 

Then – dig this. The outline of the womb is clearly visible. Blood vessels surround it; some of the bigger ones expand and shrink by the heartbeat of Iris. At some points this has the effect of the womb denting in and out in a tiny spot on the rythm or her heartbeat. The baby is just 6.5 cm long but it's smart enough to find that spot and lay its head against it. Its head rocks on the beat of Iris' heart whilke we see its own heart beating, twice as fast, on the same screen. Baby lays its head there and rocks. Is rocked. His head is rocked by Iris heartbeat.

 

(I didn't want to send out this update. I'm usually content with how I describe with what's going on inside of me. This time it feels like nothing does justice to what's going on inside of me when I remember that picture, his/her head rocking. And at the same time, it's nothing special, people get kids every day, and then, this one is just pixels, and black and white at that, I mean c'mon, CGA has four colors and was invented in '81, what are we talking about here. Well. The untalkable apparently. Here's how I tried anyway)

 

To say "that rocks" is to make a joke of the images that stay with me, every day and every night, each time something else becomes impossible, each button I can't open or tie I can't tie or bag I can't carry, in bed at night as the memories of the day join up to gang up on me and drag me away from the now. Then I see the baby rocking its head and the belly of Iris can drag me right back to the here. I'm not afraid of anything here next to her. Just afraid that I want too much – I want to be a good father and a super husband and in the time left I wouldn't mind kicking ALS in the balls. In times of stress I revert back to my default behavior, though, and I grew up learning that you spend the least time with the people that are the most important to you, and I try to unlearn that every day, but it's so much easier to pitch our investment fund to a guy who should know this better than me but doesn't and that's why he listens to me and that's how we put another brick in the wall that'll capture this beast so we can kill it than it is to be home in time and be the person you think you'd like to be because if you can't even make your wife the happiest person in the world what business have you got laying a claim to parenthood? Ten points if you didn't have to reread that line.

 

Are you getting tired of hearing this? It's so silent lately. Like everyone's gotten used to it. Everything back to normal. Yeah, we've heard sappy parent stories before. I know. But seriously, I mean, today Iris' belly POPPED OUT. No joke. You could almost hear it. Up until 8.58AM this morning there was no visible sign of pregnancy anywhere on her (grey hairs on me but I digress) and at 08.59AM she comes up the stairs and says LOOK! And wtf she's looking like a pregnant woman all of a sudden. Seriously, even the most hardcore nerd out there should think that that's cool.

 

People, a public promise. As of July 1 I will go on 80% leave for at least two months. Why not 100%? Because I don't want to make Iris suffer the burden of having me around 24/7. But the rest of the time I want to be there and drink in every single second of Iris and our child like some of the big men that surround me showed how to do (Ivo, that's you).


 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-07 19:17:212014-02-07 19:17:21She likes to move

DK7

06/02/2014/2 Reacties/in English, Updates /door garmt

It feels like I met my killer this week.

 

Not ALS – we have been introduced earlier. But we both know that he's not a killer – he doesn't have the heart for it. That guy just weakens. And then he invites buddies like lung infection or something. And this morning I woke up with the flu, unable to breathe, barely able to suck air through a throat clenched shut by some muscle spasm, sweating all over from a high fever. So that will be my killer. The flu. I had it really seriously last year around the same time; ten days of extreme fever; I wonder if that was what triggered the onset. Anyway. The bottom line is: if my lungs are weak and I get what I have now it would probably be the end of me. It's kind of ironic; we're going to cure ALS but we don't even have a medicine for the flu?

 

So it's a week with a lot of crying. I've been playing tough guy long enough and I finally figured out I don't have to do that at home too. Thank god for Iris. My fellow patients prefer to focus on the positive so much that it seems like there's no room for grief. Call me sentimental, but I kind of feel like it's right to mourn the passing of my right biceps. I was at the gym the other week and try as the physical therapist might, even she couldn't suppress a "really?" when the biggest weight I could pull with my right arm turned out to be 5 kilograms. It's inspirational to keep upbeat and focus on the positive but for me there also needs to be room to sit down and realise that you are going to miss doing a push-up, or slapping Iris' butt, or carry groceries, like you'd miss a good friend when he's gone. I quite liked the use of that arm. I have one left, Iris' butt isn't safe from me slapping it yet, and there's no telling how it will progress, but it took that arm only 8 months to get to this point, so…

 

The ALS Honeymoon is getting to an end. The collective effort, love, help, support of everyone close launched me right into orbit – never have to work again, all the holiday you want, your DREAM JOB COME TRUE, we're becoming parents! Retail therapy on top – everything is new, laptop, phone, tablet, clothes, soon a house, "best restaurant in the world" yeah yeah yeah. And everyone is so nice to me! So nice! I wonder why? And then you read a blog from the husband of a colleague, who reached out to thank me for the work we're doing against ALS, because her husband died from it as well (you think this disease is rare? Incidence is 2 in 100,000, but that is _per year_, so turns out you actually have a 1 in 300 lifetime chance to die of ALS), and those blogs from patients always start at the end and then you read backwards, and yeah, going to the toilet using a crane isn't the most fun way to spend your day. That's why everybody's still being so nice, I guess.

 

Once you digest a diagnosis like this it's quite liberating. I have always put way too much stock in other people's opinion because I deemed them to be better than me at something or the other. Well, ALS got rid of that. No more static. No one can judge me now. No one can walk a mile in my shoes (well, except maybe B and RJ, which makes me quite sensitive to their opinion). It's amazing how much better your decisions get when you just listen to reason and emotion and not to some psychological complex. I highly recommend it. Or maybe ALS just gave a tiny push to years and years of hard-core zen training? 🙂

 

I wrote a happier update earlier this week that I'll send out tomorrow.


 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-06 21:22:422014-02-06 21:22:42DK7

Mi Negra Ave Maria

25/01/2014/in English, Updates /door garmt

Hey, you know what? That tower of Pisa is really almost tipping over. Almost. Like it's beckoning you. Asking you. Pleading you to get closer. Seducing you to lean against it. To give it a push. To topple it over. To give it the rest it so desparately craves. It wants to sleep, that tower, you can tell if you pay attention. My manager and I, we heard its silent cry, and sat scheming in a bar thursday night at beer o'clock, cross-eyed, wildly gesturing widely, estimating the required size of the truck that could generate enough momentum for that critical push, almost like we were boasting about an imaginary fishing trip (mine was THIS BIG!!), trying to google on our nonworking phones where to steal said truck, the only real risk to our plan coming out of our quickly executed Accenture-approved risk attenuation target scheme/assessment structure solution (r.a.t.s./a.s.s.) the possibility of some random Italian cop giving us an alcohol test while we're wrapping the tug of our truck around the top of the tower. I mean, I don't know the Italian word for ALS, so how would I excuse myself out of this one? Excuse-ah mi, sir, but I just want to achieve world fame? And… Did you also know that despite the crooked-ness of that tower the flagpole on the top is as vertical as could be? Wow, man, I mean, wow.

 

So, huge fucking headache the next morning and still on the plane back to Amsterdam. Set a new record for oversleeping – my manager had to call me up _three times_ to ask where the hell I am and when I finally did get down: no more breakfast. Boo fucking hoo. Did I mention this post is not for children?

 

Tripped earlier this week and landed on my right fist which nicely drove its way into my ribcage to bruise one of my ribs. Don't laugh or I'll laugh with you and – OW. That hurts. Just like sneezing. Or choking.

 

I managed to get through an excellent dinner (preceding our Pisa-tower-scheming frenzy) with only three occasions of beer or wine fountaining from my lips as result of a hiccup. Trust me, in this restaurant, it was the only way to get the attention of the waiter. And he has to be polite or I'll actively target him next time. At least I've not once dropped my cutlery this time.

 

My manager isn't bothered by my breaches of etiquette – then why am I? It's not like I'm doing this on purpose. It's good for mindfullness training, actually, I've never been so constantly and continously aware of every movement any muscle in my arms or face make as when I am eating in a restaurant with a half-limp right hand (God I want steak! Fat chance, suppose you could even cut it you can't chew it anyways. etc) and a tongue that doesn't speak for a while after each course. Oh, how I will have tears of laughter down my face, when I read this in a few years, and imagine I let _THIS_ upset me. Later, back in Utrecht, in one of the most excellent evenings I've had for a long time I work out with Juel why I was apologizing for spraying beer and dropping forks. Because the very best way to show that it's not bothering anyone is to ignore it when it happens, as my manager does expertly; then; I apologise because it gives me a moment to talk about it and learn how to deal with it. Because other people are mostly dealing with it just fine – I still have to get used to it. And that never gets old.

 

Last week I went to see the company doctor. "Hello doctor!", as I enter the room. "Hello Garmt. Do I see it correctly that you are favoring the use of your left hand these days?" – she spots and sees through me within a second. So I answer: "Yes, that is correct. What shall we talk about today?".

 

The body is attracting a lot of attention these days. Stumbling, tremors, that stupid right hand, really, I gotta speak to the manager, is there warranty on this thing?, the conscious effort that talking takes nowadays. So I relish the evening with Juel, time with a special friend, time to escape for a bit, we reboot our friendship and she gives me an insanely special wedding gift (just a tad overdue), I make it way too late, I am aware that it's already 3 AM and I have still not prepared for tomorrow. In 5 hours Gerard will pick me up and we'll drive to my old University where 40-or-so Business Leaders that did the same MBA as I did will gather because I shouted "Hey, guys, I'm dying, come help". Big names are there, the dean himself got right off the plane from Toronto and is hosting the day, the professor is there, all ready to solve the problem of ALS. As I lay staring at my alarm clock, counting the hours left to Gerard's pick-up, I wonder: why do I give myself this stress? Why didn't I just prepare properly with enough time and attention? I know what enough should be and it totally doesn't feel like I'm there yet. And then I realise: I give myself this stress because I'm an adrenalin junkie. Yeah, I know all of you knew that, but some lessons are hard for me to learn.

 

Five hours later I get in the car with Gerard, another 10 hours later I am delivered back home, tired like fuck. Enough Business Leaders thanked me to convince me that the day was worth their while. Maybe I didn't do it so well as I wanted to but I think I can allow myself to be happy. Five or so attendees manage to escape without an action point and the rest is now enlisted in the fight. Roughly 6000 people on Twitter saw #mbals. Not a bad score for the day, in terms of result for "the" fight. Even better is the result for "my" fight. I don't know if I can call ALL of these people my friends, but they were there, and I could see care and worry and, I think, love, in the eyes of every single person attending today. THAT fuels my fight. Nicolas, holy crap, you came here from Colombia for this day. Marinus, you have a day job and kids, where do you find time for that marketing plan? I shouldn't name names because I always forget the most important ones… And once again the words "thank you" seem insufficient. Thank you.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-01-25 19:28:472014-01-25 19:28:47Mi Negra Ave Maria

A little less conversation…

20/01/2014/in English, Updates /door garmt

… a little more action, please. Mijn oom merkte op: joh, je schrijft steeds minder. Het dringt nu later op de avond pas tot me door dat dat is omdat tikken ongemakkelijk is. De bewegingen zitten niet meer in mijn ringvinger dus moet ik tikken met bewegingen van mijn arm. Dat is minder nauwkeurig en een stuk langzamer. Ik haat langzaam.

 

I thought I'd like to share with you a few conversational moments of the past weeks. Switching to English, I don't want to be in that position of Tom Waits, who has to apologize when he comes up to the stage, because it's been so long since he was here. Asshole, really, WHY did you have to give that show in Amsterdam in the EXACT SAME WEEK that my sister was getting married in New Zealand? So envious of Henrik, who got to go, was I, that when he first texted me "we didn't get the tickets" I could hardly not jump around and dance, until I got the text two minutes later that he DID get the tickets. OK. It's time to be honest. I _do_ have a bucket list. But it always contains just one item. So the next best thing in life after checking off "becoming a dad" is: seeing Tom Waits live. (for those of you appalled at the notion that I'm really THAT superficial that I don't say "a second child" or something, a) pretend that I'm being sarcastic ii) it's tom. waits. we're talking about here 3) have you met me?)

 

I'm not getting anywhere with these conversations. I'll do the sad ones up front and work my way towards merrier stuff.

 

Overheard in the hospital. Patient across from me. Neurologist visits and pulls the "privacy screen" around the bed. Privacy from the deaf because the rest of us hear everything. She wants him to consider again about the feeding tube. He says again: I don't want it. I'll never want it. My sister died of the same thing. I never want to talk about it again. The doctor has to make sure that he understands the decision that is taken: if you don't say yes now, later on there might not be an opportunity anymore. He understands. Now please go away.

 

The story of his sister is true. She had ALS but died of complications of the surgery for the feeding tube. This guy isn't dumb nor is he fatalistic. What's he thinking? What are you thinking? Walk a mile in HIS shoes if you will. Or in the shoes of that doctor.

 

OK, that was a nice warmer-upper, wasn't it? Let's skip to the opposite end of the spectrum before I depress you.

 

Setting: a 200 year old Austrian chalet somewhere in France. Slightly hung over from the wine from the night before. It's a cozy and nice time that we're having and I think if you add up the day rate of each of the 8 individuals in this room we are supposedly worth a small Carribean island in fees. Good thing we are drinking _expensive_ wine, then. I enter back into the room. Ronald and me look at each other and I decide to give the feedback.

"Well – there's good news and there's bad news. The good news is that our plan holds true. The guy we just spoke on the phone, my friend-connection from the RSM, he works for a company that does just exactly what we are trying to do, only with a bigger focus – all of life sciences instead of one disease. And they've already got 800mln, we have zero today. He thinks our plan so far is good. Good enough, even, to offer to put it under his umbrella. His brand and his infrastructure. That saves us a good year in having to wrestle through the forest of regulations and trying to hire people who are as rare as a sparkling unicorn. So that's the good news. The bad news is that they think the market is a bit tough. He and his 14 colleagues just spent two years raising new funds. They've been doing this for 23 years and we for 0. And they raised 85mln in 2 years. And I think: And our target is more than that, and we have to do it quicker, because I'm going to have a baby and we have to actually be done before that. What the fuck are we thinking?". RJ doesn't speak much. He prefers a little less conversation, a little more action please. But upon hearing that the guy who's been doing for a living for 2/3rds of his life in the field that we are newly entering, upon hearing that that guy thinks it's pretty much impossible, he lits up. RJ becomes alive with a glint for the first time in hours. "Ah! THAT is usually where I wake up! When someone says it's impossible I get warm!" – and I realise this man and me have even more in common than I thought. That was supposed to be my line! Imagine the voiceover: They said it couldn't be done….. I can't hold my laughter in and want to high-five him.

 

Allright. Now one a bit in the middle.

 

Setting: A Blue BMW. I didn't count how fast we go because uncle Garmt never speeds anymore since that man with the beard asked about the grass in New Zealand. He tries to make noise with the engine but I can tell he is cheating. It's OK. I point out: Look! A big star! The only star in the whole sky tonight! Look! Uncle Garmt looks and pulls over the car. He points it out. Look! Other stars there! That is a big one! Look. Wow! Those are big stars. But we agree- that first one is the biggest. That has to be the star of Jesus! Uncle Garmt behaves like he wants to ask something but is not sure how to do so because he thinks I am a child. I put him at ease and explain him patiently: If you die God makes you a star and if you were very good you get a bigger one. And Jesus was very good all the way 'till he was killed by that evil king. So god made him the brightest star probably.

 

Silence. Uncle Garmt is pensive for a second. A little less conversation, a little more action please. Uncle Garmt musters up the courage and asks: Will I get a star? Doh. I say "FOR SURE that you get a star". Really? he says, and before he has to degrade himself by asking I say "A reasonably big (or was it beautiful? what's better – a big star of a beautiful star?) one, too". He's happy to hear that, even I can tell, so I explain: "Yes. You always tried your best and you worked so hard. So hard for this car. You must have had to work an entire year for every day to earn this car".

He must be confused now – hoarse throat and at the same time he's grinning. Uncle Garmt. Shall we go now?

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-01-20 22:53:522014-01-20 22:53:52A little less conversation...

2014

01/01/2014/23 Reacties/in English, Updates /door garmt

To be precise, approximately somewhere around July 22, 2014:

2013-12-21 19.08.27

Everything is details compared to this. We are so, so lucky. And – yes, what you're thinking is correct. We had sex. But just once, honestly. 

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I can’t think of a good song today.

20/12/2013/in English, Updates /door garmt

Take note – this post was in the editing room for a few days. I don't feel like the story below anymore but it was reality when I wrote it.

 

So a few weeks ago I was writing a post in my head, a nice way of wording that this is really the best year of my life so far, ain't it great, I don't have to work anymore, we've had such a good holiday, work is nice, etc etc etc. And then there's a thud. A dull, damped sound, for instance, made by your head as it hits the pavement when you fall off the back of a scooter. The thud of the wooden shoe kicking your stomach, when the farmer catches you, when just a second earlier you were exhilarated by the idea of getting away with the apples you stole from his orchard. Or the metaphorical thud that I announce myself, when, 19 years of age, I sit sweating at my table in a gym hall, trying and failing the Calculus I exam for the third time. Admitting defeat and realizing that University was not it for me. Thud. At that thud, I actually said "fuck it" out loud, got up, gave my empty answer paper to the professor, got on my bike towards the Hogeschool and bluffed my way into a full year of free credits so I could continue doing what I did best: not studying.

 

The past two weeks have been a bit rough. I might as well say: the worst so far. Yeah, it all finally became a bit too much. Redoing the house (well, Iris is organizing that) and thinking about buying a new place to live and of course there's trouble at work always and the investment fund is going great if we just get Mr. Branson on the phone but those assholes at the car repair shop didn't adjust the steering wheel and we need to schedule the delivery of the fitness machine for that second part of the third research project we're participating in and what's the password for the site where we order the special ALS food and what about the budget for the documentary we need to arrange that quick and oh shit my aunt from France is in town but wait I haven't seen Francois at all yet and meanwhile my hand is getting worse and shit that pillow is in the wrong corner of the couch I got to call someone to ask to move it back for me as I don't have the time to do it myself fuck shit damn it why do I forget to call Iris when she's made dinner and I'm running four hours late if she's the most important thing in my life how can I treat her so bad and things keep changing so fast today we're at the revalidatiearts and listing everything that's wrong (not even all of them, half the stuff that's wrong is too embarassing to talk about) and that makes me cry but I only have ten seconds to do so since our next appointment is waiting so I man the fuck up and breathe those tears away but what kind of an example is that if I show Iris that emotions are a thing to suppress and…

 

It's like snowboarding down a mountain, going faster and faster, speeding like crazy, until you start to realize you're going too fast, you can't keep standing, the fun is gone, you know it's going to hurt, only a matter of seconds before you really lose control and keel over so fast you can't even close your eyes and you're going to eat snow. In this process of going out of control and feeling beat up from all sides (my brain is like a giant bruise, even though I just spent a week giving it the best maintenance I can think of!?!) I try to cling to Invictus: I am the master of my fate, I am the captain of my soul. I do this to myself. My head bloody but unbowed. Until the thud comes, like a bell, and you're not even sure if it's the end of one round or the beginning of the next…

 

The thud is when Iris says, thursday evening, very matter-of-factly, in a harsh voice: "Well. This situation has obviously changed us both."

 

Me thinking: fuck no. Please don't. I can take anything but not this. I can't change you back and I can't change this situation enough to keep the fairytale alive that you have always been to me. Please don't change from that never-ending always-flowing spring of life energy and joy that I have lavished myself upon so rich and selfishly. Yes, I work so much, but it's, well, like my life depends on it, and I work so much less than before, and as I make the argument I shut up as I realise there is no excuse. What is this – some devil dilemma, you can save either your marriage or your life? I know which one I'd rather have (don't even guess, please, I'm too selfish to want a life without her) but why not both? This is where I find out that the disease is indeed Mr. Smith but I'm not talented enough to be Neo. Hey, as long as I tried my best, I can live with the knowledge that I'm not good enough to win this fight. And yes, you sarcastic son of a bitch voice inside that always questions me, I _did_ try my best. I am trying my best. I'm pushing at each and every direction so hard that either the seams are starting to tear or that the scene gets so ugly that I'd rather give up than go that far. There are worse things than dying, I know 'coz I've done 'em. So stop pushing before it gets real ugly and look around and see where you stand. I know that I don't have that much room left to push and that I better turn around quick and do whatever I can to start making my peace, or something? Huh? The fight isn't that important, if I didn't even take the time to thank all the friends and family who wrote to give me support, if I forget to call Iris that I'll be home late, what kind of a person am I then, if… etc. A small taste of desperation right there. But I have a chance! Yes I do. Just like your next door neighbor has a chance to become immortal. Didn't you see The Fountain?

 

Bottom line is – Iris is right. We are changed by this situation. And we both don't like how the other one has changed. The irony is that this is not even an uncommon problem. So our life isn't carefree anymore – big deal, ask any unemployed soul with a family and a mortgage how easy life is. We don't have time for anything – did I ever talk to parents of young kids? I'm just not happy because my life didn't turn out the way I thought it would. Hey, Garmt, join the fucking club, OK? Life sucks get a fucking helmet. Denis Leary right there. Which serves to remind me that whining about how bad life is is something to laugh at. Phew. OK. That was close. I needed an escape from that spiral. Count on cynic Denis to pull you out. Ha! Did you see that? I really let myself go there. Purely for illustrative purposes. Don't worry, you can go back to your routine, we're fine, really, nothing wrong. Just some wild thoughts that had been bugging me for the past few weeks that were a little bit scary to deal with. There's enough fine news in the pipeline to go back to writing that "this year is the best of my life!"-post.

 

…

 

I hope. 'coz I still can't shake the feeling that that 'thud' was me waking up to a world where some change has taken place at some fundamental level that is way, way worse than slowly losing control over your muscles and dying.

 

See you all next week for a better post people, I'm going to step back out on to the stage.


 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-12-20 12:13:052013-12-20 12:13:05I can't think of a good song today.

I’m a train

29/11/2013/in English, Unpublished /door garmt

Albert Hammond. The guy I’m eavesdropping in stems from the era of that song, which is a polite way to say that he’s old. White hair. Travelling with a woman who’s chatting about her kids. They’re talking about flu medicine and foreigners and ditjes and datjes. He looks like a gentleman, distinguished; dressed nicely, I guess he’s active in the medical field. After a lull in their conversation with the train all silent around us he states, pensively: “Ritalin. Usually, when we have dull visitors in the evening, I take some Ritalin. To stay awake during the conversation. 5mg.”. They chatter like nothing’s odd here for a few more minutes – of course, her daughter also takes it when she’s studying for exams. I’m amazed that I’m amazed but this I am.


 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-11-29 21:52:312013-11-29 21:52:31I'm a train

Update from a malfunctioning consultant

27/11/2013/in English, Work /door garmt
——– Original message ——–
From: Garmt@Accenture
Sent: Wednesday, November 27, 2013 11:20 AM
To: People@Accenture
Subject: Update from a malfunctioning consultant
 
Well, strictly speaking, it’s just my DNA that’s malfunctioning, not me, but hey. Warning: E-mail-etiquette breach ahead – long mail, personal content, difficult sentences, sent to a lot of people. I don’t intend to make a habit out of this but I figure I’d like to keep you up to date. Apologies if it’s considered spam.
 
On a professional note.
I originally thought – I’ll take a few weeks off and then let’s get back to normal. It’s turned out a bit different than that. I’m back at work (partially), I do some client work but thanks to the generosity of Accenture most of my energy is spent on leveraging everything we have in our portfolio to, well, kick ALS in the balls, to put it as eloquently as I can. Accenture (i.c. Gert and Manon) gave me freedom – free of chargeability targets, deadlines, free of most financial worries, etc. Wow. Free to spend the rest of my professional life as Gert and me see fit. I’ve checked with my revalidatiearts (who sees hundreds of ALS cases) and she was as flabberghasted as I was. I really can’t express my gratitude so I won’t try here. I share it with you as I believe you deserve to know you work for a company that makes the right decisions in tough times.
 
On kicking ALS in the balls.
A few weeks ago, I wrote “It’s time to get serious” to the friends and colleagues that are involved in the fight against ALS. Or, perhaps better to see it as the quest to improve the machine that solves the puzzle of ALS. Yes – with passion we’ll make that machine greater! You’d figure this matter was serious enough to begin with, but over the past weeks, enough pieces clicked together to create an actual real chance of making a real difference. The plan that we are putting together is not just the most interesting project I’ve ever worked on, it’s not just fun to do, it’s not just for the greater good – there’s a real chance that we get to a cure in my lifetime. A chance only marginally bigger than spontaneous world peace, but still, it’s a possibility, and a meaningful one. It’s exciting, all the things we’re doing: Ronald Krabben is championing a project that will help shorten the time it takes for ALS drugs to get to market. Myriam and Ron are getting involved in the largest DNA research project on the planet – Project MinE, finding the cause of ALS. Zafer and Jan Willem are doing market research to find out how money flows in the world of ALS. Edde and Lucas will help a small starting company transform into a leading player in the world of ALS – with some help from Gib Bulloch this is bound to succeed. Put all this together and you get a disease that’s scared and sorry it has picked this particular guy to kill. We still need all the help we can get so please drop me a line if you’re curious. I promise you the most interesting and impactful role in your career if you’re brave enough to work with me on this.
 
On a personal note.
I’m doing well, symptoms are slowly progressing, mainly my voice deteriorating. I’ve lost the ability to whistle and I’m guessing that I will have speech for another 5-6 months, so you’ll see me around for at least that long (but it might just as well be more, or less). I’m not sure if/how I’ll continue work once I reach the Stephen Hawking-stage. Right now the biggest pain is being tired all the time. We should all sleep more and I do but it feels wrong – life is ticking away. I have much less energy and with the extra work that being a patient brings, and with the time I’m taking to create memories for my friends and family to remember me by (actually, spending time with a small clone of yourself (some people call such a thing a “nephew”) isn’t as horrific as I feared it to be), I barely get to spend about 20 hours a week on what I now consider work. Luckily I spend each and every waking minute enjoying life as hard as I can.
 
On interacting with me
In my first mail I asked you to treat me like a normal person. Or at least, like you used to treat me. I have to say – you’re all doing fine so far, which is a big blessing. Thanks. I’ve been saying that last word so often and it’s still the only right one to use – thank you.
 
Cheers,
 

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-11-27 21:39:322013-11-27 21:39:32Update from a malfunctioning consultant

Saturday morning

19/11/2013/in English, Updates /door garmt

Gaion is my 5-year old nephew from New Zealand. I'm sorry folks, it's not like I'm making these names up. "Gaion and Metis and Garmt go on a great wild adventure" sounds like "can I buy a vowel please". And as REM is as appropriate for the lad in the former post, Eels figures perfectly with this one, or at least the particular song Saturday Morning does – other than that he's more a "Metallica plays Shiny Happy People"-type of kid. I have yet to meet the stoic that can keep his cool in the vincinity of this tight-bundled ball of red-headed excitement. People say he's just like me but that's not true, he's such a pleasure to be around. Meeting a tiny version of yourself with Tompkins genes in the mix wasn't the horror I expected it to be at all and it's not like his level of activity is rubbing off on me at all, not at all no, he's just got me going at 1200 words per minute right now so if you can't make sense of what the hell is going on, all I can say is, join the club. That's what he does to you – turns your world inside out. Just 6 hours ago I was reading him a bedtime story. Go on, try to guess, what does a 5-year old kid wants to be read as a bedtime story? Wrong. Wrong. No. Wrong again. Stop guessing. It's Iris' brain poster. As he lies there on the mattress all snuggled up with his knuffel I read out the name of each and every cerebral artery and nerve and only when I'm completely and 100% done is he content to close his eyes and doze off in less than an instant. Now it's 04.15h and he kicks open the door and wrestles his way into our bed (this guy is the most aggressive sleeper I've ever seen) and then announces three hours later (which he spent blissfully sleeping while kicking Iris and me in the kidneys) that he's got exactly three aunts and it's time to start eating, now please. We make a kiwi milkshake and a banana milkshake for breakfast (which, when shaken properly, by the muscles of this guy, end up evenly covering the floor, kitchen, ceiling and walls – perfect!) and when we combine them they are hailed to be SUPER LEKKER! with more enthusiasm than I've ever had the energy for myself. We've produced about a gallon of milkshake of which after the beforementioned shaking about half is available for consumption. I see this guy, about a third of my size, prove science wrong, when he swallows down TWICE as much milkshake as me. We burp and look at each other and see the day spread out in front of us, more clean and fresh and open and peaceful than I've seen a day in a long time, and I ask him: what shall we do today, Gaion? Everything seems possible and every answer is perfect, in fact, this whole sleepover is just that.

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-11-19 22:44:342013-11-19 22:44:34Saturday morning

Drive.

19/11/2013/1 Reactie/in English, Updates /door garmt

Metis is my 7-year old nephew from New Zealand. His voice is calling out the numbers as the steadily ascending needle of my speedometer passes them – 100, 110, 120, …, it moves from “fast” to “ludicrous” into “unspeakable”. Metis, the first sensible male younger than 18 to share my enthusiasm of BMW’s. Apparently he first didn’t care about cars at all – and then he heard the sound of six German cylinders revving their way into an adrenalin rush. So we love each other and together we love my car. He’s smiling next to me as I push even faster – the road is empty enough and we go past “unspeakable” into almost creating a sonic boom. The audi Q7 behind us sticks remarkably close and one minute later Metis is patiently explaining the second police officer that grass is always green in New Zealand while I am going through my trunk with the first police officer, looking for registration papers. That guy knows his movies – he quotes Intouchables. He can’t take away my driver’s license as I don’t have it on me. He agrees that 7-year old nephews need to be shown just how fast a BMW can go and a short while later I drive on, without a fine, with a stupid grin that I’m trying to suppress and a recommendation on where to go in Germany next time. I tell Metis: “It’s because you’re such a good kid that they let us off!”. He knows better: “No. It’s because of the ALS and because he likes New Zealand”. We have a nice story to tell our parents when we get home.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-11-19 14:08:032013-11-19 14:08:03Drive.

Don’t worry, be happy!

09/11/2013/in English, Updates /door garmt

Bobby McFerrin is a genius, ladies and gentlemen. Go on, watch that, it's only three minutes long and you're guaranteed to get a smile. For those of you who didn't study an exact science: the blue underlined text is a link, if you click on it, with your mouse, or your trackpad, or whatever else makes the little arrow on your screen move, it takes you to a place on the big worldwide web, also known in popular fashion as the "Internet". This is not a useless paragraph as I have at least one reader that I needed to explain this concept to. But really. Watch it. You'll need it to get through the rest of this post.

 

So I go to the hospital for another research project. Grip strength of my right hand is now 25% of what it once was. No wonder masturbating is getting difficult. But don't worry, you're married to Iris, be happy! Sing along folks! Don't worry, be happy man. I'm here in the hospital to do a baseline measurement and from then on every three months, to chart my decline. Like a photographer getting some nice stills of the El Al boeing descending into the Bijlmer.

 

Lung capacity is at 6.6 liters. That's a lot. Only 200ml less than the first measurements. But hey, these measurements are not an exact science, so don't worry, be happy man!

 

You do it to yourself. And that's what really hurts. Radiohead. If I just took a bit more time to rest, to meditate, to work out, to go spinning, etc. Etc. But I'm so.. yeah, we heard that, tired. C'mon. You do it to yourself. I believe that. I also believe more and more what my fellow patient Robbert Jan told me: ALS is more a mental than a physical challenge.

 

I made a lot of notes that will make a nice happy post – just not this time 'round. I am happy, though, really. It sounds odd but I am, underneath a small layer of cynicism that'll rub off soon. I still stop to enjoy a breath of air. Thich Nhat Hanh gave a lecture to a bunch of kids. Asked them: What's better than a scoop of ice cream? Two scoops of ice cream. And sometimes, what's even better than two scoops of ice cream? A breath. Hearing that I could taste that he was right. I don't think I've had a real enlightenment experience yet but that speech gave me a lot of peace, right there. He explained it in a way that only he could, to make me understand. A lungful of breath can be better than the best Italian ice cream you've ever tasted. Why whine for more if you have that?

 

One funny closing story to wrap up with. Sometimes I'm not sure if I really informed everyone that I should – in particular, people that once meant a lot to me but that I'm now out of touch with. I mean, if the situation was the other way around I'd like to know. My first zen teacher for instance. Or coaches. I had a bunch of them, people who help you figure out how to find your way in life and listen to your own inner beautiful sunflower. It helped me, I owe them a good chunk of my mental wellbeing (although yeah, this post isn't the best example 🙂 ).

 

So this one coach (NOT a Zen teacher), I hadn't spoken to him in a few years, I thought he might want to know. Turns out: he didn't. In his reply he explained to me why he was angry at my email: why am I bringing more suffering to his life that is already SO hard: "I mean, really, Garmt, you have no idea how painful it is to live a life like a Coach and a Teacher, I don't mean to sound ungrateful that all my muscles are fine, but really, it is just SO DIFFICULT for me!, so stop bothering me, oh and here are some canned words of wisdom that are supposed to help but really only convey my own despair." So guess what I told him? Can you hear the tune in the background? C'mon guys, you gotta know by now, let's go, stand up, wave your arms, sing along, top of your voice, start a polonaise, involve the whole block, here we go, as loud as you can, make him hear it: DON'T WORRY, BE HAPPY! Ah, that was good for a long laugh.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-11-09 16:48:072013-11-09 16:48:07Don't worry, be happy!

If it makes you happy…

17/10/2013/1 Reactie/in English, Updates /door garmt
I called up someone important in the field of ALS research. I wanted to understand what he was doing and to see how I could offer him help. Zeef, from Israel, who works for IBM, approached me; he had heard about my story and is active in the same field as this guy. I naively thought that calling the ALS researcher to connect the two guys was a good idea. However. The ALS researcher wasn’t too happy to hear me call. He told me he has enough people offering him help, that he doesn’t have time for me and that I please go through his secretary. And that hurts. It does. It touches a sore spot deep inside me that’s still just a tad vulnerable – I haven’t yet fully recovered from the news, it seems. It tells me: you are not useful to me. I hear: You are of no value. I feel worthless. Yeah, I know that that’s my problem, and that he didn’t mean it that way, but it’s interesting to just watch that.
 
Over the years I grew a useful reflex to situations like these. I call it the “I’ll fucking show you motherfucking moron asshole idiot” reflex. I’ve learned to hide it a wry smile and say “the people who refuse my help are usually the ones who need it the most” (we Consultants are bred to show just a little bit of arrogance between ourselves). I’ve used it to motivate myself and built a pretty nice career with that. I just don’t have the time right now to go on a crusade or prove something to someone. So I care for my hurt and postpone this battle to another day.
 
Another day comes, actually, the next day. I get to speak to one of the real BIG leaders of Accenture; the person responsible for our development partnerships. I share my story and he responds in the most compassionate way. Then he puts that aside and says in his adoringly thick Scottish accent: You’ve got my sympathy, what else do you want? I opt for his advice and his connections. Within minutes of brainstorming this guy has it figured out: I’ll find out what the REAL problem is why ALS is not being fixed (Is it funding? Is it collaboration? Is it technology? What button should be pushed to make a change? I’m a strategy guy, he says, I know how to build a team and do this, and he’s right) and I’ll write it up in a story and he’ll take me to the CEO of either the 2nd or 3rd biggest charity in the world (at #1 is, yes, Ikea) and that that #3 charity actually focuses on biomedical research? Isn't that appropriate? He can connect me to any other important person that I need to talk to. I’m not sure if I want to take this on (this is a SERIOUS piece of hard work we’re talking about), I don’t know if it is more use than just the project Accenture is doing with Leonard, I don’t even know if I have the energy and the time to do something serious, but… at least I don’t feel worthless. This time it just took me one day to go from being rejected by someone I haven’t even met to getting a road to walk so far over his head to reach what he cannot… my motivation may be petty, childish, mean, wrong, whatever, but if it works to keep me going, it works. Even if it is just planning and dreams for now (I’ve yet to make an actual contribution, I think) it may lead somewhere. So this a good place to start.
 
 
 
 
 
Attached also a speech that I gave to a different group of Accenture leaders here. Didn't want to send it out as text since this is the 2nd update this week already. If you'd like to read it it's right here at this link: Speech Strategy College 16102013
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-10-17 20:27:182013-10-17 20:27:18If it makes you happy...

Freedom

08/10/2013/in English, Updates /door garmt

A George Michael lyric, of all the things to start with, but I couldn’t get it out of my head as I was walking across the square just outside our office today. Later that afternoon I came up with “I’m free…. to do whatever” but it’s not like the guys from Oasis are much of an improvement, character-wise, over George Michael.

 

So, freedom. To do whatever I want. If it sounds too good to be true – it’s probably Accenture.

 

After the diagnosis I had some concerns around what would happen with my job – the insurance that pays out to Iris if I die while employed is based on the clause "while employed”. That isn’t strictly speaking a guarantee: Accenture has the right to fire me if I’m ill for two years. Depending on social security isn’t that bad but still represents roughly a 50-60% paycut. So I was worried about that and some other details and I felt a bit nervous going in to the meeting with HR and my manager to hear what the result was.

 

The big one first – Iris’ “pension” is secured. I have it in writing here with me in a letter, signed and stamped, no-one will take this away from me: Accenture will do whatever it takes to make sure that once I do pass away Iris will receive a seriously good annual payment for the rest of her life.

 

Then the next big one. Whatever happens I will get my full salary for at least the next three and potentially five years to come. Maybe even more, depending on some technical details. That's more than twice what Accenture is obliged to do by law.

 

Another big one. I am relieved of all responsibilities: Accenture expects nothing more of me for the rest of my life. Lots of consideration has gone into this from their side and it took a good half hour before I really understood it. My manager never wants to be in the position where he has to say “Hey, Garmt, you were supposed to do this” – I have enough to worry about. I can spend the rest of my working life doing whatever I want, with full access to all of Accenture’s means and methods (and lease car and phone), their suggestion being: work to build your heritage that kicks ALS in the nuts. I can go kitesurfing or I can continue working. It’s just likely that I won’t get responsibility for a budget or a team anymore as that is considered stress they don’t want me to have. Accenture is giving me a platform to do whatever I want and wants to protect me from the workaholic within. Any other details are also covered.

 

I walk across the square in the sun, slower than I have ever walked, feeling lighter and more connected with the ground than I have ever felt, after hearing all this. I see people around me with frowns and scowls, in a hurry to do something, frustrated by their stress, the things they must, and I think: not me. I am free of all this. I am free to do whatever I want. I knew joining Accenture was the smartest thing I ever did for my career but this is more than anyone had ever expected. It’s a gift that goes way beyond what is considered fair. Gert calls this the dream job, and it has all the character traits of one, but like Sartre theorized: freedom is also…. frightening. He also theorized that hell is other people, but I’ve written enough posts about that already!

 

I speak to my manager again half an hour later and start to feel uneasy. I’m out of the rat race. I’m no longer striving for the at-the-very-top position. But I’m not broken yet! Which is exactly why they want to give this to me NOW, so I can enjoy all I want _while I can_. I’m free to use the Accenture network to get introduced to the CEO of Google and ask him to fund Project MinE. I’m also free to work on a project if I want. I’m just protected by a few rules that prevent me from doing what got me here – stress myself more than humanly possible. And that makes me feel castrated – like I’ll be a ghost strolling around the office, the guy with nothing to do but polish his job title, even though I know that I’m seeing ghosts and I’ve seen it in their eyes today, all and anything that these guys want is what is best FOR ME. Man I feel so ungrateful, I’m sorry. I’m getting to grips with the realisation that indeed my career is over. This was the top of the hill. In the most recent reorganisation I was made Strategy Senior Manager, all I ever hoped for (well, partner would have been good, but hey) and that is as good as it gets. Is this my pension? Isn’t it common for pensioners to feel useless? This is where I usually end the post with: fuck that, I’ll show ‘em. And I will. I’ve said it often enough: this disease will be sorry that he bit into my arm. Don’t you worry. But this huge gift did make my upcoming death more real and I just need a minute to get over that thankyouverymuch.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-10-08 02:52:472013-10-08 02:52:47Freedom

‘coz he’s going…

26/09/2013/2 Reacties/in English, Updates /door garmt
the distance.
 
The morning after the brief but intense kitesurf, I wake up with my left fist balled, clenched between my knees. Like I subconsciously want to keep hold of it? My hand and arm are tingling… They call it "pins and needles" but it always feels more like there's a current running through the sleeping body part. It's not a symptom of ALS. It's just what happens if you sleep with your hand between your knees. No worries. 
 
After meditation I try to pick up my cushion and can't hold on to it with that same left hand. A simple thumb-and-forefinger grip that I used to hang my whole body weight on, a few years back in Belgium during rock-climbing. The cramps and fasciculations are gone after a week of sleeping in, the voice is much better, but I didn't expect this to work like a trade. In the afternoon my full strength is back, I attribute it to the pins and needles from waking up, I'm sure it's nothing, even as I'm thinking that the second voice says, you were subconsciously giving your hand an excuse not to have that strength by sleeping on it like that… ohh, the games our mind plays. Noticing myself carefully over the next few days… I'm pretty sure: it's starting in my left hand. 
 
You let go of a small dream, where the disease would stay like this for the next year or two years, you have a new marker to measure your progress against, each time you do something with your left hand that your right hand can't do you're realizing: what if this one doesn't, either? I'm in a toilet and can't open the door with my right hand (a round slippery doorknob) – thinking, hah, that'll be my end, stuck in a toilet and unable to operate the fucking doorknob, who'd have thought. 
 
I think back to the kitesurfing and to the thought I had before. Am I paying a price? I've paid other smaller prices when the tiger that the sea is scratches back at you, and they are all worth it. I let my mind's eye pass over the scenery I've witnessed: the first days at the Autostrand, when you could still drive on to the beach and set up right out of your car, the first trip where I brought a huge extra bag to New Zealand and tried setting it up in the Bay of Islands in no wind, I am now camping on the beach in Beauduc, the only spot in Europe without GSM coverage, jumping with my Vegas, I wake up hearing the sea in Bonaire in the best holiday that I ever had, where in the last day I tried the F-16 trick for the first and last time (ouch), I see the waves at King's Cliff in Australia, the quick after-work sessions at Wijk aan Zee where I ran in to Fred in the middle of the ocean, I feel the joy of buying a waveboard, the triumphant extacy of escaping a wave that's crashing down behind me, the heavenly taste of a 3-euro-durum at Steph's house after a session, the lucky showoff jump I made in front of Max B. at Ijmuiden that day, each and every time that I'm out there the first feeling is still: I can do this!, it took me such a long time to learn this that I'm grateful for succeeding to get up and go each and every single time, even after ten years. 
 
How can you whine about losing a muscle when you've got this set of memories to live by? I may die, but I have lived, for sure. The voice whispers: just wait, it'll get worse yet, and it might, but right now, I'm still winning, because I can be happy and grateful.
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-09-26 00:54:212013-09-26 00:54:21'coz he's going...

Just one more bite

21/09/2013/1 Reactie/in English, Updates /door garmt

Eat and be merry for tomorrow you may die-t. Dietitians. Do we ever go to see them because we LIKE to?

 

You get where this is going: I had to go and see one, last week. It's a bit like visiting a priest, in one of those old movies, where you expect to get flogged with the schijf van vijf (Dutch equivalent of MyPlate or Eatwell Plate) and have to whisper a million hail-mary's for each Mars bars you've had.

 

Confession, then, is listing what you eat in an average day. And each time she says "… and?" you have to realise that there is an answer to that question – you actually eat so much more than you think. Semi-skimmed yoghurt with cereal. The salad bar at lunch. The cappuccino's with sugar. The cheese platter at night. The bags, no, what's the superlative degree of potato chips?, the nuts, the.. and I can go on.

 

Her look is stern, she doesn't seem that concerned but she is about to give me her verdict and tell me off. I can imagine the wagging finger, the triumphant look on Iris' face as she now has Doctor's Approval to snatch away my last remaining (yeah, i wish) sin against healthy living. She inhales and begins: well.. that semi-skimmed yoghurt. WTF – I'm not eating non-fat yoghurt, if that's what you're about to recommend me, I'll burn up this entire revalidatiecentrum and you along with it! Oh wait, she's telling me, what? That I'd better choose full-fat options from now on? And those potato chips – better have them each night? What? And nuts? And cheese? Lots of dairy? Ten eggs a week is fine? And lots of animal fats? She's telling me to eat MORE? Did she actually formulate the words that amounted to the fact that it's a good idea to eat snacks each night?

 

Maybe I should feel offended – what am I, Mr Creosote? No way. Right now I'm actually happy to have ALS. Bring on the jamon iberica, the manchego, the omelette for breakfast, the ground beef burgers that Iris is preparing right now in our kitchen (I had to explain to the butcher here, in Spanish, what minced meat is, in Holland the cheapest variety of animal product to be found, I wanted to make bolognaise sauce, so he said "aahhhh!!" and ground up half a kilo of prime rib steak). You're welcome to share one if you happen to be in the neighborhood.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-09-21 14:10:442013-09-21 14:10:44Just one more bite

Up, Down…

10/09/2013/1 Reactie/in English, Updates /door garmt

Up, Down.

 

Up: Dinner with a special group of colleagues, maintaining a tradition, feeling full part of the family again.

 

Down: The worst, worst page in my personal history book coming back to haunt me. If I ever had a memory I don't need confrontation with it's this one.

 

Up: Meeting fellow ALS patients for the first time, together with my employer. Inspirational and empowering – their words: "We're just going to solve it".

 

Down: Realizing how big this fight is. It takes one Ph. D. four years to understand one gene of a fruit fly. Yeah, we're going to crack this thing within a few weeks. Well, we might, you know. We have Ivo. And Jos, who can manufacture monocyclal antibodies in his kitchen. Here's a reminder Jos: C6446H10016N1712O2010S48 . I'll have a million of them please.

 

Up all the way into the sky: Hearing that my employer is considering to free me up from normal work so I can lift up everything our company has to offer and throw it right in the face of this disease – so I might be getting PAID to do this fight, even! It can't get crazier than this!

 

Down: Less push-ups. And fasciculations in my lip, now.

 

Up: Amsterdam City Swim! WTF! All my colleagues! Everyone! All the friends at the finish! Wow! This is… *sound of mind exploding*

 

Down, and up, at the same time: Seeing fellow ALS patients. Some of them swimming faster than me. Some of them being carried through the water by friends. Some of them will never swim again.

 

Up: Getting told, kind of, not to be a wimp and just cycle that Mont Ventoux myself, by the only other type of person in the world who can tell me this without getting kicked in the nuts, because he did it too, and he has had ALS for much longer than me.

 

Up: Realising that this single swim brought in almost one tenth of what the whole of USA spends on ALS annually. WTF!

 

Down: Realising that we have about a million more miles to go.

 

Up: Being offered a speaking spot on the national "Managing Director" day by our country manager – so I can challenge them to do their best in helping with this fight!

 

Up: Learning that Iris and me share a wish that makes me feel even more close to her. *NOTE: RELAX people, it's just a wish, not an intention :-)*

 

UP and DOWN and UP shortly after each other: Confusion about places in the clinical trial that might, you know, save my life a bit longer, making my heart jump in my chest like I've not often felt before, final outcome: there's a spot for me, it just starts a little bit later. If I pass the screening, first infusion: Nov. 4. Put your bets on NON-PLACEBO-GROUP please.

 

Up: El Cellar Can Roca mails back. They are fully booked for the next 11 months and are not taking reservations. But would I like to have a table for 8 at, say, December 18? Fuck yeah.

 

Am I a yo-yo, or what?! Please? All this in just 5 days. And I'm forgetting most of it. May I live in interesting times.

 

P.S. Link to the (dutch) interview with Radio 1 here: http://alsdantoch.com/wp-content/uploads/2013/09/JOLIEN-REPO-ALS-0809.mp3

source: Jolien van de Griendt, BNN. Of course all my comments about thanking employer and friends and family for the support were edited out (not interesting for radio), but it's still a nice short piece of interview.
 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-09-10 18:14:482013-09-10 18:14:48Up, Down...

Just because you’re paranoid…

01/09/2013/2 Reacties/in English, Updates /door garmt

… don't mean they're not after you. So we gotta keep running.

 

Earlier today. Sitting. Quietly. Outwardly, at least. Breathing. Hands in the mudra, my head racing, stopping every now and then in my belly, until I feel a hand on my shoulder. Bony but warm. I don't move but I can tell he's made an effort; dressed up and all. I ask, or say, rather: you're here for me. Yes, says Death. But not just yet, I think. Wow. We know Nick Cave has a communicative voice (the night Tjarda told me she was the second woman to leave me for a 10+-year older man (if I ever do become a songwriter no-one's going to believe my lyrics) I immediately put on Nocturama and finished the first bottle of wine by the time Wonderful Life was through – listen to that track and tell me you have ever heard a more beautiful way of expressing the beauty of sadness, or the sadness of beauty, who knows, but I digress) but the way this guy makes one "Yes" sound and feel is even beyond Nick (maybe even beyond Tom (ha, as if, keep trying, Death)). Back to his voice. Respectful. Knowing. Sad. Inevitable. Uniquely for me and yet the same for all of us. It comforts me, mostly. Odd. I feel my arm twitch (small movements; just yesterday my arm looked like a giant sausage with a live rat trapped inside, eating its way through) and ask him: is that you? No, he says, that's life. Enjoy it. We sit for a while there, together, he in his black robe behind me. We talk a bit, I remember saying: I was expecting the other guy. Oh, but you talk to him all the time, Death says, you just never sit down with him. Right.

 

We are quiet together for a while.

 

I think of an exchange between Rincewind, a character in Terry Patchett's books, and Death, who often comes for him but never succeeds, who utters in frustration when Rincewind has evaded his scythe once again: "You're just trying to delay the inevitable!". Rincewind says: "Isn't that what staying alive is all about?" When he leaves I feel grateful – for him leaving, for him coming here to get to know me. Or the other way around. Doesn't seem like such a bad guy. Or girl, if I can have a choice, I might prefer the image of Death that Neil Gaiman portrays in the Sandman comics. I shiver all over once he's gone – not from fasciculations. Perhaps it's a bit cold in here. Going back to the knot in my belly. It's tighter – I haven't cried in days now.

 

When the beep announces the end of my 25 minutes I get up and go back to the laptop – lots of work to do before the big meeting tomorrow, with the big professor, the biggest hope for some experimental treatment that will buy me extra time, delay the inevitable, and ultimately lead to a cure. 673 clinical trials for ALS treatments. Only a handful of relevant trials currently in phase 3, Edaravone being one of them, as an example. It was succesful in phase 2 in 2008. Two succesful phase 3 trials are usually needed before a medicine becomes avilable for all. This one might make it to the market in 2015. Or I can buy it on ebay – it's available for patients with other disorders. But taking it is probably illegal and disqualifies me for any other trial. Some drugs are on the "fast track" – meaning what, it'll just take 10 years instead of 20 to get approved? And – the cure might be in there somewhere. Really. We're diving into an enormous haystack, and if there is a needle in there, I am sure I will not find it. I am 100% certain that Ivo and Roland and Maurits and all the others who helped over the past two weeks will find it. DNA, arguably the biggest scientific discovery of the 20th century, was 'found' the same way: a small group of people going through available information and piecing it together one by one. To quote Gimli: Certainty of death. Small chance of success. What are we waiting for? With the people helping me right now – you gotta feel sorry for this disease. We're coming, better hide quick.

 

More cheerful times – last Friday, around noon, doorbell: Roland arriving. Just laying eyes on this man brings mirth, glee, a mischievous sense of "shit is going to go down, all the way down" (paraphrased from the big man himself, Miles Davis (keep going like this and in a few more mails I won't have any quotes or songlines left to throw out)). This is the person who has no formal training in biology whatsoever but who was second opinioning the diagnostic process real-time over email, on my first day at the ALS center, even as I was waiting for the blood tests to come back: "Why are they not testing for GM1 antibodies? They'd better not use the ELISA test for Lyme disease, those amateurs!" (both questions have a good answer of course but the fact that he was giving me input like this, probably while on a business conference call on the same time, that's how large his brain is, makes me feel warm and surrounded by friends that know me). This is the man who represents the ultimate in so many areas of life (self-improvement, creativity, intensity, intelligence, noncompromise) that it's truly a miracle we don't reach critical mass together and wipe Utrecht off the map whenever he's here. Never, ever, ever be off your guard when this man asks you, probably before you've even had coffee in the morning: who would you kill if you could go back in time? (hint: it's not Hitler. it's Aristoteles. Trust me.). So Roland has arrived. Man, I could and should write ten updates just about him, but you'd all be dozed off and crash your car as you're reading while steering with your knees driving 180 down the highway. C'mon, don't we all do that? No? Well, I will still be doing it even when I am paralyzed: LINK. No joke! Watch that! It's insane!

 

Life can't always be a big party though. I'm starting to get perspective, there's whole hours that we don't think about it, that things seem like normal. I gotta get back into a normal rythm or I lose touch with all you 9-5 types our there who have things like a day-night rythm and stuff to distract them from disease-stuff. Iris will go back to work part-time next week. I can't bear to think about it yet but it will be good for me eventually. And having a guy with a voice computer present the sales pitch must leave a lasting impression, at least. Ah, don't worry, I'll annoy you with my voice at least a few more months. So anyways it can't always be a big party. Tonight will be (or was, depending on when I send this out) a party – Thomas coming over with 48 oysters, fresh from France, which will pair nicely with the foie gras that my aunt dropped off earlier today. Jos coming over with some insane surprise he's trying (and succeeding) to get me worked up about. And he's bringing the champagne. I'm tired all the time these days (still not sure if it's the emotion or the riluzole and it's worsened by alcohol and it's starting to feel like every simple task is a huge chore and where's the energy to do anything at all these days man I'm closer to burn-out now than when I was working but hey, champagne? C'mon! Pop-pop!). Our two-week-research-marathon has ended up in a nice short list of questions for the professor. Ozanezumab or GM604 or GCSF? Or wait for the stem cells? Or get my hands on some Edaravone or Gilenya? What about Vitamin D and B12? Yesh, we've been busy, all of us.

 

In further news:

  • 54 pushups day before yesterday, bitches.

  • Lost 2.5kg of weight. Not a good thing.

  • Earlier, when I was talking about headgames; the idea of losing Iris is not a headgame. That sucks.

  • I need all of you to help me keep seeing the positives. Right now there's only scary monsters (and nice sprites (bonus westvleeteren if you're the first with this one)) in my mind, obscuring the view of an otherwise absolutely excellent evening. Note; I just added some pictures below – I don't need to be afraid for this one I think.

  • I don't make any entertaining jokes when I'm tired. Time for a holiday.

 

Check out some nice pictures to get an idea of our past month:

2013-08-06 11.17.52 Potatoes from our balcony!

 

2013-08-23 20.21.37 Pomegranate-champagne at the beach!

 

2013-08-28 21.26.23 The long-long-long awaited ultimate best photo book ever! Thank you PAUL!

 

2013-08-29 20.30.38 The most stylish suit ever seen at a wedding – uniquely sun-bleached at one side!

 

2013-08-30 12.31.16 Courgette from our balcony – FTW!

2013-08-30 18.23.45 Colleagues raising money for the Amsterdam City Swim at the friday-afternoon-drink!

 

 

 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-09-01 21:25:082013-09-01 21:25:08Just because you're paranoid...

No subject today

29/08/2013/4 Reacties/in English, Updates /door garmt

I'm starting to type this as I'm sitting at the beach. Lovely weather. Overlooking the see. Wedding. They are hard to enjoy these days, unfortunately. We're summoned for the pictures – E. in his suit which makes him look better than I'd like to admit, the rest of us, all nice. No problems. I ask a question to someone, get a joke as an answer, and have to try so hard not to punch that person in the face, that all I can do to help myself is just to walk away. For what? For a joke? Apparently. There's nothing wrong whatsoever with that person's response and yet… I'm drained, emotionally, of all my reserves, and try as I might it's hard not to take it out on other people. In my confusion it's like they're trying to hurt me even though it's really me hurting me through them.

 

Perhaps there's a reason why diaries are usually locked up and hiding underneath a bed. Or why they are associated with emotionally unstable adolescents (a pleonasm if there ever was one). Part of what I write is considered hurtful for and by some. I get requests for moderation and feedback that I'm using my disease as an excuse to say whatever I please. I´m being told to harden the fuck up. Please, Garmt, have some motherfucking consideration, act normal, will you, it´s been a month now. And -…. they´re right. Of course they are right. All my life I have known the right and the wrong decision. Each time I smoke a cigarette. Eat too much. Spend money on a three-star restaurant instead of on a charity. Yell at a friend instead of feel for him. Or more down-to-earth – I know when I am creating bad karma. Each and every tiny single bit of it, and I know beter than any and all of you that it will come back to haunt me when I need it least. So why add more now? Why continue to create bad karma? Because it takes energy? That I'm spending instead on looking for a cure which we all know IS NOT THERE or it wouldn't be called a motherfucking INCURABLE DISEASE now would it (Matthew, I'm just writing these lines to upset the profanity filter at your company), anyway, why waste energy on all these other things when I can use it to be a better person? Am I even a better person for applying censorship? Well, if I was in the other person's shoes, I would think me a better person for being considerate, for not spewing whatever comes up for the world to read (hey, 68 people on the list, and no more than a few hits, it's not the whole world, I know that, I'm not being arrogant here). I wouldn't want all thoughts other people have about me to be out there in the open, either. Right?

 

I'm torn – one the one hand, any and all of you who have any remote complaints about reading what I write, please feel invited to tell me to remove you from the list and to never look up the website again. You're most welcome to remove yourselves. On the other hand – I am trying to be a better person. But don't take that as a promise.

 

Thank you for having read chapter 1 of "how to cope with writing a personal blog". I'm sure everyone goes through this. We'll continue with chapter 2 next week.

 

Ah, one more thing. The pseudobulbar affect (read that link some time if you interact with me. I have it in a mild form now but it might impact how you communicate with me in the future) can account for laughing or crying but not for anger or punching someone in the face. If that happens I'm accountable for it msyelf.

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-08-29 18:36:332013-08-29 18:36:33No subject today

Good times, bad times.

21/08/2013/4 Reacties/in English, Updates /door garmt

Which, referring to the subject line here, incidentally, is the name of the Led Zeppelin song that I played about a year after I started on electric guitar, well, "played", I managed to squeeze out most of the notes, even the solo, although Iris would never actually call it "playing", it felt great, and after that I felt like I didn't need to play the guitar no more, since, hey, if you do a few Led Zeppelin songs and there are still no hordes of scantily clad nubile young women throwing themselves at you, what's the use? I actually need to look up what "nubile" means – I've heard the term being used in this fashion but I have no idea if I'm referring to nude women, women from the far and away country Nubiles or the regular kind i'll twist your balls off if you mess with me women. Anyway.

 
Good times; 10 out of 10 points for the Dutch healthcare system.
I'd like to go kitesurfing. Like I've been doing for 10 years. But the grip in my right hand is getting weaker. I asked the revalidatiearts what we could or should do? She made an appointment with an ergotherapeut (yeah, google is your friend again today), who saw me this morning, who then proceeded to equip me, within one hour and twelve minutes, with a custom-made kitebar-gripping cyborg device. Custom made. Within one hour. Picture below. Holy crap. I'm impressed. And crying again like a baby. Does this ever stop? Thank you, E. from H., for doing what you think is your job, which is doing more for 'quality of life' than any overpaid marketing strategist ever did.
2013-08-20 18.07.33
 
Bad times.
I have one friend, I mean I have a lot of friends, but this one friend whose brain is so huge it's almost bigger than his heart, he knows me, he knows I eat Omega-3 fish oil diligently since 7 years, he's got the same gut feeling that I do: does this have any effect on the disease? So without me even having brought it up, he points me to this article, that says: ALS mice that get fed omega 3 die earlier. So this one is good news and bad news. I have a telepathic friend who looks out for me on the medical field. And the stuff I took to keep me from getting depressed just maybe, may have been helping the disease progress faster. Let's see what the doctor says about this one. *UPDATE 8/30 – after discussion with the doctor, I learned that the mice basically OD'ed on the EPA-oil. So no hard feelings to the doctor here!! In the tests they gave mice the equivalent of 90 fish-oil pills per day. And in combination with DHA it's a different story also. I'm still not taking them though.*
 
Things about ALS that make me cry in a good way:
  • The sight of my colleagues diving into the Amsterdam water to practice for the City Swim.
  • Iris diving into the Amsterdam canal (OK, I can't resist asking: please sponsor her! LINK – her name isn't up there yet but she will be. And sorry for asking on her behalf.)
  • Random acts of kindness, Claartje's CD, the sight of my 4-year old neighbor kid opening the door without underwear. I wasn't crying because his penis is bigger than mine, if you're wondering.
  • Nick Cave. Live at Lowlands. Beautiful sad reality. That man is a master. Pictures of him and NIN at the end of this post.
  • Realising after our first huge fight that the idea I had about marriage (that somehow it would be difficult) is completely false. In terms of cost-benefit analysis of a relationship, at least on my end of the bargain, man, you hear people say that they feel lucky? They aren't married to Iris or they would know what REAL luck is. I gotta stop emailing and spend time with her. I hear you screaming already; yes, I will.
 
Things about ALS that make me cry in a bad way:
  • One of my colleagues swimming the practice run so fast he is back and forth before I'm even back. OK, this one is a joke.
  • Hurting other people because I feel so boxed up, so pushed, so fucked up. It's starting to creep out, to seep through, fuck it.
  • Feeling hurt by people meaning well but who mis-listen. It's not that difficult – just listen to what I have to say and stop pushing your own agenda.
  • Failing to get the time and space that I feel we need.
I'll be better once I have a grip on this, once I meditate enough to give this space. Until then… sorry for the negativity.
 
Things that make me feel good:
  • The fight is gearing up. I haven't decided yet if I am going to fight or not, if I am going to accept or push the limits, but like I said, let's try each other out, let's have a practice fight, you and me, and me is everything about me, so whoever I can tag along as well. Troops with a hunger for just a small fight are welcome to apply – and expect to get enlisted.
Cheers y'all, time to get back to work,
 
G (pictures of NiN, Nick Cave, an inside joke (R. and myself still believe there's a .000001% chance it's not ALS but Lupus, but Dr. House knows better) and a group picture of us at Lowlands)
 
2013-08-16 22.05.46 2013-08-18 22.06.25 2013-08-16 19.41.44 2013-08-16 18.50.49-2
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-08-21 14:23:512013-08-21 14:23:51Good times, bad times.

Life ain’t pretty for a dog-faced boy

15/08/2013/1 Reactie/in English, Updates /door garmt
(or, let it E, let it E. Saw Eels tonight, ladies and gentlemen, and if you do not go out RIGHT NOW and buy an LP of Souljacker you don't deserve to have ears. God damn right it's a beautiful day. I'm not swearing, I'm just quoting lyrics here.)
 
People, the blog is almost done. This is the last trial-post. You can get uncensored versions of these posts via email if you send me a request. This blog will also "feature" a few side stories which are mainly for myself; they'll function to help me understand the disease.
 
So. Some more positive aspects of having ALS:
  • An almost-irrefutable argument why your party deserves to skip the waiting list at El Cellar Can Roca (with NOMA at #2 these days, hey, the choice for dinner is obvious (and if this argument doesn't win, Matthew's making sure that we get the reservation from his manager instead))
  • SOD1-mice (who are bred to develop ALS) survive much, much longer when they get a calorie-rich diet. I say bring on the foie gras, the seventeen-course dinners and the midnight snacks at El Greco (who, if you don't know, make the _very_ best pita gyros in the world). Seriously, weight loss is a BAD THING in ALS, so I can eat away without feeling guilty. Luckily I have Neil as a prime example of a living buddha (in terms of body) and Menko to handle the ordering (but Menko, please, at this rate I might actually die from alcohol poisoning before ALS ever gets to me (still, thanks)).
Other good news:
  • 53 pushups in one go today – one more than last week. Peter, I'm nearing your daily routine, well, I'm almost 10% there that is but still, even if I have to do it with one hand, I'll get there. This means my upper right arm, even though it's less strong, isn't diminishing as fast as I feared. And for those of you who offered your left arm for instructional purposes – perhaps we can put that off a few more weeks.
  • I've had a cognitive test to check if I'm demented. I can't remember the outcome (ha!) but the word-recall-score that I had was the highest the researcher had ever seen. Yeahhhh.
Less favorable news:
  • My neurologist, I like him as a person, but as a doctor, I'm not entirely sure this is going to work. It feels like there's a clear doctor-patient separation, as there probably should be, but I'd rather collaborate with him, be a brain as well as a body with a disease, and I'm not sure if he's too interested in working with me (why would he be, ok, but hey). Next meeting with the bigshot, the professor. I'll try to behave less like an asshole with him. I'm sorry.
 
Other things to ponder. I'm way over my word-quota already but it's such an interesting time to live through. Not necessarily fun or easy but good to live in. One of my friends told me she needed 20 years to accept her diagnosis of MS (a disease that I remember hoping for, as odd as that may sound, when I was still awaiting the outcome of the tests (I even asked, at the first neurologist interview, if it could be ALS – I put it out of my mind the minute Paul said "I can't know two people with ALS, that'd be too big of a coincidence" – hence I never saw it coming, but I knew it was something bad all along, or I wouldn't have actually felt hope for MS )). Leave it to me to fast-track that process. The bizarre situation with my best friend's wedding (for the record, I have two best friends), which can only be metaphorized by the image of him flying high over the clouds in the sunshine, with me looking up from underneath, in the middle of a thunderstorm. I'm trying to be happy for him, but it's f..king difficult, which makes me feel like a selfish bastard and makes me feel like he is a selfish bastard for being so happy, and then I feel like more of a selfish bastard for feeling that about him, all at the same time. Interesting times. Good stuff for the zen training. And one of my teachers always said that your spirutial life begins with the awareness of death/mortality. Fast-tracking the enlightenment process along the way, thankyouverymuch. You may call me Lord Garmt Buddha when I've gained enough weight 🙂
 
It's not such a happy or funny entry, this one. I promise the next one will be happy and funny again. It's starting to seep through – the flash-vision, for instance, when I'm out to dinner, realising that a few years from now, the same friends that I joke with now will be feeding me while I'm talking back like Stephen Hawking. The idea that not all my friends, whom I all love so, so much, will be willing or able to put up with the situation as it worsens. Fuck, scary pictures. And the biggest thing I keep avoiding – Iris, how can we together, ever, ever begin to build our life around this? What can I ever do to .. there aren't even words. Insert funny joke here, I'm out for the moment. Off to hug Iris and be as good to her as any and all living humans should be. My bravest friend said it the night of the diagnosis: hey, it's fucked up for Garmt, but who I REALLY feel for is Iris.
 
Edit a few days later: picture of Eels, at the open-air theatre, where they played so hard the sky almost fell down.
2013-08-14 22.42.20
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-08-15 01:18:412013-08-15 01:18:41Life ain't pretty for a dog-faced boy

This one is pretty ugly… (but I wasn’t hired for my good looks anyway)

05/08/2013/2 Reacties/in English, Updates, Work /door garmt
(email to colleagues at work)
 
This is a long, serious and slightly personal email. If you know me, have worked with me or expect to work with me in the future (so essentially, if you receive this e-mail), please take careful time to read it properly.
 
A few months ago, I started noticing a small speech impairment. More recently, I started to notice a slight decrease of power in my right hand. Nothing serious, but I did decide to go and see my doctor. She referred me to a neurologist, who did a battery of tests; that neurologist referred me to two other neurologists. To make a long story short, and I’m sorry that I can’t find the best way to bring this news gently, today I got a confirmed diagnosis: I have ALS. If you don’t know what that means, I recommend you to read THIS link. I’ll sum it up for you in three lines: The connection between my brain and my muscles will slowly get worse. Right now there is no known cure and it always results in death. About 50% of patients that receive this diagnosis live another 3 years. A very small portion of patients live past 10 years. Meaning: I’m sick but I’ll be around for a while, at least.
 
As diseases go, there aren’t really that many that are more ugly, but the way I look at it, things could be a lot worse. There are so many ways to die, all of us do at one point, this way it’s just a bit earlier than expected and a bit more in-your-face than perhaps I’d like, but hey. An average expectancy of three years isn’t too bad; I could be run over by a car or get shot by an angry customer any average day. I’ve already done enough living in the past 36 years to put your average 90-year old to shame. I’m likely to keep all my cognitive abilities throughout, I’ve got a good going-in position (I’m young, otherwise healthy, strong, etc) and so far the process has been guided by extremely professional and compassionate care-takers. The support of my wife, friends and colleagues who knew about the suspected diagnosis are heart-warming (and needed). There’s clinical trials and research that may lead to a cure yet in my lifetime, and if not, eventually we’ll kick this just like we (mostly) kicked other ugly diseases.
 
This is the point in the email where I explain how grateful I am to be working for a company like ours. I said this to my first project team and I will say it to all of you, from the bottom of my heart: it is truly an honor and a pleasure to work with people like yourselves on the type of projects that we do. In my career of four companies in 15 years, the happiest years have been the last three, since I joined this wonderful group of driven, creative, annoyingly pedantic know-it-all’s. And even though ALS has cured me of being addicted to working (no more 90-hour working weeks), I would like to continue doing which has given me so much pleasure and fulfillment over the past years: working on interesting projects with smart colleagues. Well, that and kitesurfing.
 
Now for the bad news. I’m the one with the disease, but all of you are going to be affected by it in some small part. Don’t worry – it is NOT contagious, the chances that you will get it are pretty much zero (occurrence is 1 in 100.000, with 80% of patients over 50 years of age before they get it; I won a real nice lottery with this one so you don’t have to). But you will see me around the office or with projects and that may be confrontational. I don’t know yet what the outlook is going to be, if and how we’ll make this work in terms of doing regular work and for how long I’ll be able to continue, but at the very least, I’ll be back (spoken in the voice of Arnold Schwarzenegger), so you’re not rid of me just yet.
 
Action required on your end? Well, for starters, you’re going to keep on treating me like a normal colleague. Just because I speak a bit slower and can’t win with arm-wrestling anymore doesn’t mean I’m any less able to outsmart you (and I will). You’re welcome to approach me with questions about this (preferably once I’m back in the office) or to completely ignore it altogether if that works better for you. For the next few weeks I’m out of office, figuring out how to deal with this “change of plans”, but like I said: I will be back, given the limits of what will be possible and desirable for all of us.
 
See you all soon, take care, and be grateful if you’re healthy,
 
Garmt
http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2013-08-05 15:48:032013-08-05 15:48:03This one is pretty ugly... (but I wasn't hired for my good looks anyway)

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