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

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Remember Sammy Jankins

12/07/2014/1 Comment/in English, Updates /by 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://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png 0 0 garmt http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png garmt2014-07-12 20:40:592014-07-12 20:40:59Remember Sammy Jankins
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Full story

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So here’s the book:

EVEN WITH ALS

(yes it’s all caps!)

Garmt van Soests first book. Part two will follow, later.

EVEN WITH ALS is the overhauled, revised, spellchecked collection of his blogposts. Furnished with more than a hundred footnotes, a foreword, epilogue and an extra appendix. Garmt curses, raves, fights, wins, sighs, cries, breaks, listens, sees, feels and shares. With powerful language and words that strike home, the book expertly punches you in the gut.

So get a move on. With a few simple clicks of a button, a piece of cake for those without ALS, the brand-new book will be making eyes at you from your mailbox in no time.

Convinced? Click here to buy it
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I have the book, show me the extra content already.

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
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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.

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