ALS Dan Toch

Hey, you know what? That tower of Pisa is really almost tipping over. Almost. Like it's beckoning you. Asking you. Pleading you to get closer. Seducing you to lean against it. To give it a push. To topple it over. To give it the rest it so desparately craves. It wants to sleep, that tower, you can tell if you pay attention. My manager and I, we heard its silent cry, and sat scheming in a bar thursday night at beer o'clock, cross-eyed, wildly gesturing widely, estimating the required size of the truck that could generate enough momentum for that critical push, almost like we were boasting about an imaginary fishing trip (mine was THIS BIG!!), trying to google on our nonworking phones where to steal said truck, the only real risk to our plan coming out of our quickly executed Accenture-approved risk attenuation target scheme/assessment structure solution (r.a.t.s./a.s.s.) the possibility of some random Italian cop giving us an alcohol test while we're wrapping the tug of our truck around the top of the tower. I mean, I don't know the Italian word for ALS, so how would I excuse myself out of this one? Excuse-ah mi, sir, but I just want to achieve world fame? And… Did you also know that despite the crooked-ness of that tower the flagpole on the top is as vertical as could be? Wow, man, I mean, wow.

So, huge fucking headache the next morning and still on the plane back to Amsterdam. Set a new record for oversleeping – my manager had to call me up _three times_ to ask where the hell I am and when I finally did get down: no more breakfast. Boo fucking hoo. Did I mention this post is not for children?

Tripped earlier this week and landed on my right fist which nicely drove its way into my ribcage to bruise one of my ribs. Don't laugh or I'll laugh with you and – OW. That hurts. Just like sneezing. Or choking.

I managed to get through an excellent dinner (preceding our Pisa-tower-scheming frenzy) with only three occasions of beer or wine fountaining from my lips as result of a hiccup. Trust me, in this restaurant, it was the only way to get the attention of the waiter. And he has to be polite or I'll actively target him next time. At least I've not once dropped my cutlery this time.

My manager isn't bothered by my breaches of etiquette – then why am I? It's not like I'm doing this on purpose. It's good for mindfullness training, actually, I've never been so constantly and continously aware of every movement any muscle in my arms or face make as when I am eating in a restaurant with a half-limp right hand (God I want steak! Fat chance, suppose you could even cut it you can't chew it anyways. etc) and a tongue that doesn't speak for a while after each course. Oh, how I will have tears of laughter down my face, when I read this in a few years, and imagine I let _THIS_ upset me. Later, back in Utrecht, in one of the most excellent evenings I've had for a long time I work out with Juel why I was apologizing for spraying beer and dropping forks. Because the very best way to show that it's not bothering anyone is to ignore it when it happens, as my manager does expertly; then; I apologise because it gives me a moment to talk about it and learn how to deal with it. Because other people are mostly dealing with it just fine – I still have to get used to it. And that never gets old.

Last week I went to see the company doctor. "Hello doctor!", as I enter the room. "Hello Garmt. Do I see it correctly that you are favoring the use of your left hand these days?" – she spots and sees through me within a second. So I answer: "Yes, that is correct. What shall we talk about today?".

The body is attracting a lot of attention these days. Stumbling, tremors, that stupid right hand, really, I gotta speak to the manager, is there warranty on this thing?, the conscious effort that talking takes nowadays. So I relish the evening with Juel, time with a special friend, time to escape for a bit, we reboot our friendship and she gives me an insanely special wedding gift (just a tad overdue), I make it way too late, I am aware that it's already 3 AM and I have still not prepared for tomorrow. In 5 hours Gerard will pick me up and we'll drive to my old University where 40-or-so Business Leaders that did the same MBA as I did will gather because I shouted "Hey, guys, I'm dying, come help". Big names are there, the dean himself got right off the plane from Toronto and is hosting the day, the professor is there, all ready to solve the problem of ALS. As I lay staring at my alarm clock, counting the hours left to Gerard's pick-up, I wonder: why do I give myself this stress? Why didn't I just prepare properly with enough time and attention? I know what enough should be and it totally doesn't feel like I'm there yet. And then I realise: I give myself this stress because I'm an adrenalin junkie. Yeah, I know all of you knew that, but some lessons are hard for me to learn.

Five hours later I get in the car with Gerard, another 10 hours later I am delivered back home, tired like fuck. Enough Business Leaders thanked me to convince me that the day was worth their while. Maybe I didn't do it so well as I wanted to but I think I can allow myself to be happy. Five or so attendees manage to escape without an action point and the rest is now enlisted in the fight. Roughly 6000 people on Twitter saw #mbals. Not a bad score for the day, in terms of result for "the" fight. Even better is the result for "my" fight. I don't know if I can call ALL of these people my friends, but they were there, and I could see care and worry and, I think, love, in the eyes of every single person attending today. THAT fuels my fight. Nicolas, holy crap, you came here from Colombia for this day. Marinus, you have a day job and kids, where do you find time for that marketing plan? I shouldn't name names because I always forget the most important ones… And once again the words "thank you" seem insufficient. Thank you.