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Even With ALS

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

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Made from paper. Tangible, flammable, wow!

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Latest post

La Grande Bellezza

14/05/2014/in English, Updates /by garmt

See it if you can.

 

Conversation at the pool, enjoying the sun, earlier this week:

"Iris?"

"Yes?"

"Upon which set of values and principles should we build the rules and directives for the Raising of our Daughter?"

"That's simple. On mine. Saves us a lot of arguments too."

 

Also at the pool:

"One-zero."

Hm?

"One-one!"

Wtf?

"It's a soccer match in my belly, I'm just keeping score".

Later that evening we want to watch a movie and she's just all over the place. Womb. You get the idea. Iris places my hand on her belly. A minute later her skin gets hard right underneath my hand and the movement stops: peace… Zomer snuggled either her head or her butt into my hand right through Iris' skin. We watch the movie like this and it is heaven. I am SUCH a SUPER PROUD DAD.

 

The next conversation happened, word for word, during dinner last night:

Y: "That Playboy party, it was…"

Me: "Let me interrupt you right there. You were at a Playboy party? First, invite me next time. Second, how did you get in?"

Y: "Well, my girlfriend at the time was in the magazine."

Me: "You dated a PLAYMATE?!?!"

Y: "Three, actually… when I was younger."

Me: "…"

Anyway, about that Playboy party: it sucked. And he's all grown up now, a father, 27 years old, and one of the nicest people I know. So if you want to date a playmate, just be one of the nicest people, apparently that works.

 

A few weeks ago at my birthday party. Martijn checks his smartwatch. AJ next to him sighs: "That's how things go nowadays. We look at our watch for an SMS and we look at our phone for the time.". Later that evening, all of us drunk, AJ will interrupt me when I finally manage to join the group discussion. It's such a gift – he knows he's probably the only one who can get away with interrupting me… like he's saying: fuck you, you may have ALS but you're still the same to me, and I get it. It's a gift. To the rest of y'all, if you don't let me finish my sentences, I'll set Bernt on you, he's still got the muscles I had (and more, who am I kidding).

 

I should write something more real. This macho stuff and writing down snippets of my life that make me pause aren't distilled enough. Like thoughts half formed, .

 

Friendship. A small example of a real thought half formed.

We take a separate room when we "discuss", but we aren't fooling anyone: we hate each other's opinion, each other's methods, each other's thoughts, we hate each other. To the core. Either that guy goes or I go. We fight all day and we fight all night and on the weekends we both call Matthew to complain about the OTHER guy; he wearily counsels us back to peace. For a day or so – and then it's Monday, and we fly to Dublin again, Alexander and Karsten and myself, and Alexander and me continue our fight while Karsten has to do the entire project on his own, shaking his head and wondering who ever put us together. Thrupoint did, that's who. It's the winter of 2003 and it's my last assignment with this company. One time I frustrate Alexander to the point where he screams "When I worked at Accenture, I had two Ph.D's to shine my shoes!" and I yell back that he should have stayed there and that someone please remind me never to go to a company like THAT. Over time, we thaw a bit; we discover a shared love for sushi and casinos, I watch the little guy (Karsten; I remember thinking "where's the rest?" when I met him) drink a pint faster than Alexander drinks a half-pint, we actually crack the case: our recommendations are implemented and deliver huge improvements for our customer, we never say it out loud but by the time I quit Thrupoint in April 2004, we have developed a respect which actually grows into love over time. Brothers in arms, type of thing, I guess – it was a pretty intense time. We don't lose track but we also don't see each other again except once in '06 – when I desparately try not to seem desperate about wanting to join the company they both started to work for. God, I was unhappy at Orange.

 

And then, their gift for my 37th birthday arrives: a day at the track with a Ferrari, a Lamborghini and an Aston Martin!! I get a call from that same old Karsten. Guess who he's standing next to? That same old Alexander. They still work as a team. And they're coming over. Utrecht, hide your sushi and your casinos! Old friends should never be forgotten – and ALS is a nice excuse to relive old memories and create a few good ones for the future.

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 garmt2014-05-14 23:23:092014-05-14 23:23:09La Grande Bellezza
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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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