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Laat een bericht achter op de gedenkplaats van Garmt:

https://www.memori.nl/gedenkplaats/garmt-van-soest/

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Geef een bijdrage om de film over Garmt te kunnen realiseren. Voor Zoë.

https://www.doneeractie.nl/garmt/-4282

ALS Dan Toch

Garmt was experiencing ALS – so you don’t have to!

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Latest post

Remember Sammy Jankins

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

Hello all,

 

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

 

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

 

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

 

Ok. A few moments that are shorter to describe.

 

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

 

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

 

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

 

I stroll through Haarlem with my friend Anne Jan.

"AJ?"

"Yes?"

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

"….. not yet, I think.."

"Me, three times, this week alone."

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

 

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

 

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

 

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

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-07-12 20:40:592014-07-12 20:40:59Remember Sammy Jankins

Summertime ALS Update

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

From: Garmt@Accenture

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

To: People@Accenture

Subject: Summertime ALS Update

 

Good news everyone,

 

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

 

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

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

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

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

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

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

 

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

 

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

 

Cheers all,

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


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

 

 

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

ALS_Initiatives_Overview_20140709_External

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-07-09 15:54:552014-07-09 15:54:55Summertime ALS Update
Pagina 48 van 80«‹4647484950›»

Full story

Klik en koop!

ALS DAN TOCH - Laatste Boek - Garmt van Soest

ALS DAN TOCH

(LAATSTE BOEK)

Dit tweede – en laatste – boek schreef ik grotendeels afhankelijk van beademing en knipperend naar het toetsenbord van mijn computerscherm. Mijn lijf lam, maar mijn geest glashelder. Vol ophopende gedachten, want schrijven ging steeds moeizamer. Het gaat over uitrazen en neerstorten. Over leren genieten van het genot van anderen, naakt en weerloos betast en bepoteld worden, tot last zijn en me daar schuldig over voelen. Over de opbeurende lyrics van Nick Cave en Skunk Anansie. Over voortleven – in anderen.

Doodgaan is heel eenvoudig, een moment, iedereen kan het. Sterven is andere koek. Sterven is afronden, teruggeven voordat het uit je handen wordt gerukt, vrede bereiken. Maar het is ook een startpunt: je kunt pas echt leven als je goed kunt sterven. Dus STERF, GVD!

Overtuigd? Klik hier om ’m te kopen

ALS DAN TOCH

(EERSTE BOEK)

Het eerste boek van Garmt van Soest.

ALS DAN TOCH is de herziene, gereviseerde, van taalfouten ontdane en van meer dan honderd voetnoten, een voor- en nawoord, en een extra appendix voorziene bundeling van zijn blogposts.  Garmt vloekt, tiert, vecht, wint, zucht, huilt, breekt, hoort, ziet, voelt en deelt. In krachtige taal en rake bewoordingen vliegt het boek je haarscherp en loepzuiver naar de strot.

Dus hop. Met een paar luttele drukken op de knop, een makkie voor wie geen ALS heeft, ligt dat spiksplinternieuwe boek binnen twee dagen naar je te lonken op de deurmat.

Overtuigd? Klik hier om ’m te kopen

Klik en koop!

Geen fan van papier? Lees alles online, hier!
Ik heb het boek al en wil gewoon de extra content zien.

Voor wie is het boek?

Het boek is uiteraard voor wie gewoonweg geen genoeg krijgt van zijn blog, maar ook voor hen die onder een steen geleefd hebben en pas net op de hoogte zijn van het feit dat er überhaupt zoiets bestaat als de blog van Garmt. Het is ook voor een ieder die inmiddels een muisarm heeft ontwikkeld van het vele doorklikken op de website en natuurlijk voor de vrienden van de oude stempel, die het ouderwets geil vinden om een potje aan ècht papier te snuffelen tijdens het lezen.

ALS DAN TOCH is voor iedereen die Garmt en de stichting ALS een warm hart toedraagt. Want uiteraard gaat de uitgeversopbrengst van het boek naar de stichting ALS. Vooruit, en de royalties gaan naar dochter Zoë. Dus je doet met het kopen van het boek niet alleen jezelf of je moeder een groot plezier, maar maakt tegelijkertijd de wereld een klein beetje mooier.

Win-win.

Zijn beschrijvingen zijn scherp. Geestig. En eerlijk.

Volkskrant

“...wrange humor en stoere vechtlust…”

Algemeen Dagblad

"Een boek waar alles inzit."

Jeroen Pauw

dadablblblblrrrr, die!!!!!??!

Zoe L. van Soest

Join the fight

Hello, dear reader. ALS is currently incurable, but I’ll be fucked if I’m taking this lying down. I’m also trying to be realistic about this, but still, a bit of a battle does a person good every now and then. The fight I’m fighting is summed up pretty neatly here in this video (februari 2014).

There are a few ways you can help out with a small donation:

232Km in 2016

Sponsor James Faust as he participates in 4 races in 4 countries to raise money toward research.

While I swim, bike, and run, you can show your support by donating.

Project Mine

The biggest genome research project known to date. My biggest bet that we’ll find the cause. Once that is known, we at least know what we’re shooting for.

Stichting ALS

Of course, the big constant factor is the Dutch Stichting ALS; they welcome your annual donation; small or big.

Your idea here?

Are you swimming, cooking, cycling or walking against als? do you know someone who is a millionaire and wants to make money? Mail to info@qurit.org or press the button.

Sponsor James Faust
Visit Project Mine
Visit Stichting ALS
Contact Me

My friend who’s really on top of the fight is Bernardus Muller and you can find him on https://twitter.com/BernardusMuller. His twitter feed is the best place to hear what’s going on with ALS. If anything can be done or if we or someone else have managed to achieve something, you’ll hear about it from him first.

Follow the latest updates on ALS

Who?

Garmt van Soest

Garmt van Soest is a versatile manager with a strong background in business strategy and technology. He has advised Fortune 500 companies in the US and Europe since 2000. Garmt joined Accenture in 2010 as a Senior Manager in Strategy where he has been leading engagements in different industries, solving complex problems, advising on strategic direction setting and leading organizational transformation programs. Since his diagnosis with ALS his full-time job is to fight this disease with everything he and Accenture can muster.

Do you have ALS yourself? Click here!

Pers

Volkskrant

Ik ben niet gek of dronken, ik heb ALS

Trouw

Vechten tegen verbittering

Algemeen Dagblad

Garmt slaat keihard terug naar dodelijke ziekte ALS

PAUW

Garmt bij Jeroen Pauw

GIEL!

Garmt bij Giel Beelen

RabRadio

Garmt bij Paul Rabbering

Tot slot, een hoekje met zenboeddhistische dingen.

  • Een interview met ons clubblaadje, voorjaar 2014, waarin Maurice best goed mijn toenmalige gedachtes over Zen wist te beschrijven. Interview.
  • Een stukje voor hetzelfde clubblaadje, waarin ik wat losse gedachtes geef over Het Woord: Het Woord.
  • De beschrijving van mijn motivatie om zenbuddhist te worden: Jukai.
  • Een hapsnap verzameling van tekstjes en gedichten, alhier.
  • Ik gaf ooit een megalomaan praatje aan het einde van een rohatsu, in IZC De Noorderpoort. Bekijk het hier: Filmpje
  • Een stukje over het liefhebben van je lot: Amor Fati.

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