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Even With ALS

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

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Latest post

I can’t think of a good song today.

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

…

 

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

 

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


 

http://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 garmt2013-12-20 12:13:052013-12-20 12:13:05I can't think of a good song today.
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Click to buy!

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
Not a fan of paper? Read it all online, here!
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
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.

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