ALS Dan Toch
Garmt is experiencing ALS – so you don’t have to!
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Take note – this post was in the editing room for a few days. I don't feel like the story below anymore but it was reality when I wrote it.
So a few weeks ago I was writing a post in my head, a nice way of wording that this is really the best year of my life so far, ain't it great, I don't have to work anymore, we've had such a good holiday, work is nice, etc etc etc. And then there's a thud. A dull, damped sound, for instance, made by your head as it hits the pavement when you fall off the back of a scooter. The thud of the wooden shoe kicking your stomach, when the farmer catches you, when just a second earlier you were exhilarated by the idea of getting away with the apples you stole from his orchard. Or the metaphorical thud that I announce myself, when, 19 years of age, I sit sweating at my table in a gym hall, trying and failing the Calculus I exam for the third time. Admitting defeat and realizing that University was not it for me. Thud. At that thud, I actually said "fuck it" out loud, got up, gave my empty answer paper to the professor, got on my bike towards the Hogeschool and bluffed my way into a full year of free credits so I could continue doing what I did best: not studying.
The past two weeks have been a bit rough. I might as well say: the worst so far. Yeah, it all finally became a bit too much. Redoing the house (well, Iris is organizing that) and thinking about buying a new place to live and of course there's trouble at work always and the investment fund is going great if we just get Mr. Branson on the phone but those assholes at the car repair shop didn't adjust the steering wheel and we need to schedule the delivery of the fitness machine for that second part of the third research project we're participating in and what's the password for the site where we order the special ALS food and what about the budget for the documentary we need to arrange that quick and oh shit my aunt from France is in town but wait I haven't seen Francois at all yet and meanwhile my hand is getting worse and shit that pillow is in the wrong corner of the couch I got to call someone to ask to move it back for me as I don't have the time to do it myself fuck shit damn it why do I forget to call Iris when she's made dinner and I'm running four hours late if she's the most important thing in my life how can I treat her so bad and things keep changing so fast today we're at the revalidatiearts and listing everything that's wrong (not even all of them, half the stuff that's wrong is too embarassing to talk about) and that makes me cry but I only have ten seconds to do so since our next appointment is waiting so I man the fuck up and breathe those tears away but what kind of an example is that if I show Iris that emotions are a thing to suppress and…
It's like snowboarding down a mountain, going faster and faster, speeding like crazy, until you start to realize you're going too fast, you can't keep standing, the fun is gone, you know it's going to hurt, only a matter of seconds before you really lose control and keel over so fast you can't even close your eyes and you're going to eat snow. In this process of going out of control and feeling beat up from all sides (my brain is like a giant bruise, even though I just spent a week giving it the best maintenance I can think of!?!) I try to cling to Invictus: I am the master of my fate, I am the captain of my soul. I do this to myself. My head bloody but unbowed. Until the thud comes, like a bell, and you're not even sure if it's the end of one round or the beginning of the next…
The thud is when Iris says, thursday evening, very matter-of-factly, in a harsh voice: "Well. This situation has obviously changed us both."
Me thinking: fuck no. Please don't. I can take anything but not this. I can't change you back and I can't change this situation enough to keep the fairytale alive that you have always been to me. Please don't change from that never-ending always-flowing spring of life energy and joy that I have lavished myself upon so rich and selfishly. Yes, I work so much, but it's, well, like my life depends on it, and I work so much less than before, and as I make the argument I shut up as I realise there is no excuse. What is this – some devil dilemma, you can save either your marriage or your life? I know which one I'd rather have (don't even guess, please, I'm too selfish to want a life without her) but why not both? This is where I find out that the disease is indeed Mr. Smith but I'm not talented enough to be Neo. Hey, as long as I tried my best, I can live with the knowledge that I'm not good enough to win this fight. And yes, you sarcastic son of a bitch voice inside that always questions me, I _did_ try my best. I am trying my best. I'm pushing at each and every direction so hard that either the seams are starting to tear or that the scene gets so ugly that I'd rather give up than go that far. There are worse things than dying, I know 'coz I've done 'em. So stop pushing before it gets real ugly and look around and see where you stand. I know that I don't have that much room left to push and that I better turn around quick and do whatever I can to start making my peace, or something? Huh? The fight isn't that important, if I didn't even take the time to thank all the friends and family who wrote to give me support, if I forget to call Iris that I'll be home late, what kind of a person am I then, if… etc. A small taste of desperation right there. But I have a chance! Yes I do. Just like your next door neighbor has a chance to become immortal. Didn't you see The Fountain?
Bottom line is – Iris is right. We are changed by this situation. And we both don't like how the other one has changed. The irony is that this is not even an uncommon problem. So our life isn't carefree anymore – big deal, ask any unemployed soul with a family and a mortgage how easy life is. We don't have time for anything – did I ever talk to parents of young kids? I'm just not happy because my life didn't turn out the way I thought it would. Hey, Garmt, join the fucking club, OK? Life sucks get a fucking helmet. Denis Leary right there. Which serves to remind me that whining about how bad life is is something to laugh at. Phew. OK. That was close. I needed an escape from that spiral. Count on cynic Denis to pull you out. Ha! Did you see that? I really let myself go there. Purely for illustrative purposes. Don't worry, you can go back to your routine, we're fine, really, nothing wrong. Just some wild thoughts that had been bugging me for the past few weeks that were a little bit scary to deal with. There's enough fine news in the pipeline to go back to writing that "this year is the best of my life!"-post.
…
I hope. 'coz I still can't shake the feeling that that 'thud' was me waking up to a world where some change has taken place at some fundamental level that is way, way worse than slowly losing control over your muscles and dying.
See you all next week for a better post people, I'm going to step back out on to the stage.
