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.
Sent: Friday, October 28, 2016 3:46 PM
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
“Kicking ALS in the balls”
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.”
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.
“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.
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!
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!
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.
- 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 email@example.com 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.
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.
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.
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/.
This one is a bit of a lecture, folks. I guess it is my way of dealing with disappointment.
So, today, Juel walks in, sees the object in the picture below:
and 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.
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.
that would have been so! cool!
imma post this as a blog btw
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?
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.
my best friend paul put it all together
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
makes me wait.
the cpu in Iris’ macbook has just a teensy bit of a higher score on passmark.
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 ———-
Date: Wed, Sep 9, 2015 at 7:24 AM
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.
———- Forwarded message ———-
From: Garmt van Soest
Date: Sun, Sep 13, 2015 at 8:37 PM
Subject: Re: Prayers
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!
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.
Every now and then, I wonder, I wa-wa-wa-wa-wonder, have I still got it? Do I still have it?
This post is not beautiful or nice. I started it to complain, and that is ugly.
- 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.
- 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.
From: van Soest, Garmt
Sent: Wednesday, April 29, 2015 23:13
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
“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.
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.
With all my complaining lately, I thought it would be nice for a change to tell you about these wonderful presents I received lately.
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.
From: van Soest, Garmt
Sent: Sunday, November 23, 2014 21:20
Subject: ALS is still here, but so am I
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
“Kicking ALS in the balls”
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.
Love you more than I know,
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.
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.
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
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
The first letter of Tharros
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:
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.
"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.
Sent: Wednesday, July 09, 2014 1:04 AM
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 firstname.lastname@example.org 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!
(a beer on me for those of you who got the futurama reference)
This is the link to the powerpoint that was attached to the e-mail:
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;
it's not that i don't want to hear from you
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!
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.
Conversation at the pool, enjoying the sun, earlier this week:
"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:
"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."
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.
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.
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):
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.
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:
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.
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.
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.
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.
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.
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.
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!!
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.
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."
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.
Sent: Friday, February 07, 2014 2:58 PM
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!
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).
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.
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.
… 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?
To be precise, approximately somewhere around July 22, 2014:
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.
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.
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.
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.
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.
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.
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.
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.
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:
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.
… 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:
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.
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.
- 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.
- 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.
- 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.
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)).
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.
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.