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 garmt2013-09-26 00:54:212013-09-26 00:54:21'coz he's going...
The morning after the brief but intense kitesurf, I wake up with my left fist balled, clenched between my knees. Like I subconsciously want to keep hold of it? My hand and arm are tingling… They call it "pins and needles" but it always feels more like there's a current running through the sleeping body part. It's not a symptom of ALS. It's just what happens if you sleep with your hand between your knees. No worries.
After meditation I try to pick up my cushion and can't hold on to it with that same left hand. A simple thumb-and-forefinger grip that I used to hang my whole body weight on, a few years back in Belgium during rock-climbing. The cramps and fasciculations are gone after a week of sleeping in, the voice is much better, but I didn't expect this to work like a trade. In the afternoon my full strength is back, I attribute it to the pins and needles from waking up, I'm sure it's nothing, even as I'm thinking that the second voice says, you were subconsciously giving your hand an excuse not to have that strength by sleeping on it like that… ohh, the games our mind plays. Noticing myself carefully over the next few days… I'm pretty sure: it's starting in my left hand.
You let go of a small dream, where the disease would stay like this for the next year or two years, you have a new marker to measure your progress against, each time you do something with your left hand that your right hand can't do you're realizing: what if this one doesn't, either? I'm in a toilet and can't open the door with my right hand (a round slippery doorknob) – thinking, hah, that'll be my end, stuck in a toilet and unable to operate the fucking doorknob, who'd have thought.
I think back to the kitesurfing and to the thought I had before. Am I paying a price? I've paid other smaller prices when the tiger that the sea is scratches back at you, and they are all worth it. I let my mind's eye pass over the scenery I've witnessed: the first days at the Autostrand, when you could still drive on to the beach and set up right out of your car, the first trip where I brought a huge extra bag to New Zealand and tried setting it up in the Bay of Islands in no wind, I am now camping on the beach in Beauduc, the only spot in Europe without GSM coverage, jumping with my Vegas, I wake up hearing the sea in Bonaire in the best holiday that I ever had, where in the last day I tried the F-16 trick for the first and last time (ouch), I see the waves at King's Cliff in Australia, the quick after-work sessions at Wijk aan Zee where I ran in to Fred in the middle of the ocean, I feel the joy of buying a waveboard, the triumphant extacy of escaping a wave that's crashing down behind me, the heavenly taste of a 3-euro-durum at Steph's house after a session, the lucky showoff jump I made in front of Max B. at Ijmuiden that day, each and every time that I'm out there the first feeling is still: I can do this!, it took me such a long time to learn this that I'm grateful for succeeding to get up and go each and every single time, even after ten years.
How can you whine about losing a muscle when you've got this set of memories to live by? I may die, but I have lived, for sure. The voice whispers: just wait, it'll get worse yet, and it might, but right now, I'm still winning, because I can be happy and grateful.