Example of great gifts

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

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

Below, the gift she sent me.

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

Dear Garmt,

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

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

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

Gassho.

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

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

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

Also, I see Matthew this weekend! Yay!

Garmt.

Tattoo Stories Part 1

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

 

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

 

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

 

A “thank you” rather than a farewell

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

 

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

 

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

 

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

 

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

 

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

 

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

                                                                       Maria – Garmt’s team member J

 

Tharros

The first letter of Tharros

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

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

 

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

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

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

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

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

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

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

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

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

vGarmt enjoys some time kitesurfing.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hey Brother

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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.