ALS Dan Toch
Garmt is experiencing ALS – so you don’t have to!
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Wie ben ik en alles wat nergens anders past
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.
Full story
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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:
Henrik has joined the ride to defeat ALS. You can help out by sponsoring him.
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.
Of course, the big constant factor is the Dutch Stichting ALS; they welcome your annual donation; small or big.
Are you participating in a something, or do you know a good cause? Mail Garmt on [xyz-ihs snippet=”mailto”] or use the contact form.
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.
Fill it out and just press send.