ALS Dan Toch
Garmt was experiencing ALS – so you don’t have to!
Up, Down…
Up, Down.
Up: Dinner with a special group of colleagues, maintaining a tradition, feeling full part of the family again.
Down: The worst, worst page in my personal history book coming back to haunt me. If I ever had a memory I don't need confrontation with it's this one.
Up: Meeting fellow ALS patients for the first time, together with my employer. Inspirational and empowering – their words: "We're just going to solve it".
Down: Realizing how big this fight is. It takes one Ph. D. four years to understand one gene of a fruit fly. Yeah, we're going to crack this thing within a few weeks. Well, we might, you know. We have Ivo. And Jos, who can manufacture monocyclal antibodies in his kitchen. Here's a reminder Jos: C6446H10016N1712O2010S48 . I'll have a million of them please.
Up all the way into the sky: Hearing that my employer is considering to free me up from normal work so I can lift up everything our company has to offer and throw it right in the face of this disease – so I might be getting PAID to do this fight, even! It can't get crazier than this!
Down: Less push-ups. And fasciculations in my lip, now.
Up: Amsterdam City Swim! WTF! All my colleagues! Everyone! All the friends at the finish! Wow! This is… *sound of mind exploding*
Down, and up, at the same time: Seeing fellow ALS patients. Some of them swimming faster than me. Some of them being carried through the water by friends. Some of them will never swim again.
Up: Getting told, kind of, not to be a wimp and just cycle that Mont Ventoux myself, by the only other type of person in the world who can tell me this without getting kicked in the nuts, because he did it too, and he has had ALS for much longer than me.
Up: Realising that this single swim brought in almost one tenth of what the whole of USA spends on ALS annually. WTF!
Down: Realising that we have about a million more miles to go.
Up: Being offered a speaking spot on the national "Managing Director" day by our country manager – so I can challenge them to do their best in helping with this fight!
Up: Learning that Iris and me share a wish that makes me feel even more close to her. *NOTE: RELAX people, it's just a wish, not an intention :-)*
UP and DOWN and UP shortly after each other: Confusion about places in the clinical trial that might, you know, save my life a bit longer, making my heart jump in my chest like I've not often felt before, final outcome: there's a spot for me, it just starts a little bit later. If I pass the screening, first infusion: Nov. 4. Put your bets on NON-PLACEBO-GROUP please.
Up: El Cellar Can Roca mails back. They are fully booked for the next 11 months and are not taking reservations. But would I like to have a table for 8 at, say, December 18? Fuck yeah.
Am I a yo-yo, or what?! Please? All this in just 5 days. And I'm forgetting most of it. May I live in interesting times.
P.S. Link to the (dutch) interview with Radio 1 here:
source: Jolien van de Griendt, BNN. Of course all my comments about thanking employer and friends and family for the support were edited out (not interesting for radio), but it's still a nice short piece of interview.