It feels like I met my killer this week.


Not ALS – we have been introduced earlier. But we both know that he's not a killer – he doesn't have the heart for it. That guy just weakens. And then he invites buddies like lung infection or something. And this morning I woke up with the flu, unable to breathe, barely able to suck air through a throat clenched shut by some muscle spasm, sweating all over from a high fever. So that will be my killer. The flu. I had it really seriously last year around the same time; ten days of extreme fever; I wonder if that was what triggered the onset. Anyway. The bottom line is: if my lungs are weak and I get what I have now it would probably be the end of me. It's kind of ironic; we're going to cure ALS but we don't even have a medicine for the flu?


So it's a week with a lot of crying. I've been playing tough guy long enough and I finally figured out I don't have to do that at home too. Thank god for Iris. My fellow patients prefer to focus on the positive so much that it seems like there's no room for grief. Call me sentimental, but I kind of feel like it's right to mourn the passing of my right biceps. I was at the gym the other week and try as the physical therapist might, even she couldn't suppress a "really?" when the biggest weight I could pull with my right arm turned out to be 5 kilograms. It's inspirational to keep upbeat and focus on the positive but for me there also needs to be room to sit down and realise that you are going to miss doing a push-up, or slapping Iris' butt, or carry groceries, like you'd miss a good friend when he's gone. I quite liked the use of that arm. I have one left, Iris' butt isn't safe from me slapping it yet, and there's no telling how it will progress, but it took that arm only 8 months to get to this point, so…


The ALS Honeymoon is getting to an end. The collective effort, love, help, support of everyone close launched me right into orbit – never have to work again, all the holiday you want, your DREAM JOB COME TRUE, we're becoming parents! Retail therapy on top – everything is new, laptop, phone, tablet, clothes, soon a house, "best restaurant in the world" yeah yeah yeah. And everyone is so nice to me! So nice! I wonder why? And then you read a blog from the husband of a colleague, who reached out to thank me for the work we're doing against ALS, because her husband died from it as well (you think this disease is rare? Incidence is 2 in 100,000, but that is _per year_, so turns out you actually have a 1 in 300 lifetime chance to die of ALS), and those blogs from patients always start at the end and then you read backwards, and yeah, going to the toilet using a crane isn't the most fun way to spend your day. That's why everybody's still being so nice, I guess.


Once you digest a diagnosis like this it's quite liberating. I have always put way too much stock in other people's opinion because I deemed them to be better than me at something or the other. Well, ALS got rid of that. No more static. No one can judge me now. No one can walk a mile in my shoes (well, except maybe B and RJ, which makes me quite sensitive to their opinion). It's amazing how much better your decisions get when you just listen to reason and emotion and not to some psychological complex. I highly recommend it. Or maybe ALS just gave a tiny push to years and years of hard-core zen training? 🙂


I wrote a happier update earlier this week that I'll send out tomorrow.


2 replies
  1. Jos de Vries Spaans
    Jos de Vries Spaans says:

    Allerbeste Garmt, mijn gedachten en intenties gaan uit naar jou en je gezin.

    Woorden schieten me te kort als ik lees waar jij en je vrouw doorheen gaan.

    Benauwheid en adem te kort ken ik van baby af aan, rekening moeten houden met beperkingen daardoor ook, maar zó intens en nabij dat mijn longen me in de steek laten…

    Misschien heb ik het nooit toegelaten, die intensiteit…

    Ik mediteer voor je, dat je kracht mag krijgen in iedere adem, in ieder moment van wanhoop, twijfel, verdriet, boosheid…. dat de Liefde die je hebt leren kennen je mag dragen en je verlichten in dit proces… dat je lijden mag transformeren in Licht en Onmetelijke Liefde.

    Een hele diepe buiging voor jou en je vrouw en allen die met jullie verbonden zijn.

    Jos de Vries Spaans, Hilversum

  2. Carla Kruit
    Carla Kruit says:

    Beterschap en sterkte!! En geef ruimte aan wat je voelt! Dat hoort er ook bij. Ik kan me voorstellen dat je inderdaad rouwt telkens als er weer iets is dat niet meer kan. Zo oneerlijk, zo onmenselijk om iemand aan te doen… Misschien helpt het idee dat je leven hebt gegeven (al is het nog in een buik) aan een heel klein wezentje dat telkens iets meer kan, telkens als jij iets niet meer kan. Gaat het leven toch een beetje door al is het helaas niet in jouw lichaam…

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