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Even With ALS

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

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She likes to move

07/02/2014/in English, Updates /by garmt

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).


 

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 garmt2014-02-07 19:17:212014-02-07 19:17:21She likes to move
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Full story

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.

Do you have ALS yourself? Click here!

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