March 17, 2021
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R

Handle with care

March 17, 2021

Some guys have all the luck. I was born with glass bones and paper skin. Every morning I break my legs. Every afternoon I break my arms. At night I lie awake in agony until my heart attacks put me to sleep. -Fish from Spongebob.

This fish from Spongebob is almost like me, a very fragile sack of meat. My bones are made of squish, and my muscles of hopes and dreams. I injure super easily and the pain lasts. So yes, maybe I am that fish from Spongebob, just with a very healthy ticker and strong tattooed skin. Because of my fragility I have sustained some injuries over the years. Since I'm always sitting in my chair I have developed chronic pain in my ass which means I can't wear pants. I'm often sitting Commando under several blankets. Rachel jokes sometimes that I'm just a mountain of fabric, a real life fabric-the-Hutt you could say. I also have chronic back pain now because of an unfortunate hoyer transfer without a lift, just the sling. Back pain is no joking matter, I have to take serious drugs for it, ones that you can get addicted to. The newest addition to my collection is a knee injury that's taking a bit to heal, but my legs are better at healing than any other part of my body because they barely move. They seem to be quite a useless appendage at this point, they just hang there, getting cold and hitting things. 

With all this pain I am now quite afraid of injury. I do not want to add any more chronic aches to my collection. Unfortunately, I have to give up control of my body to others. It takes me a while to trust new care staff because I'm afraid they'll accidentally hurt me. I'm so fragile that it doesn't take much. However, some people I feel I can trust very quickly. It’s almost like they were born caregivers. R is one of them. The very first time she visited me she put me in a hoyer lift, dressed and undressed me, and helped me pee. I don’t trust most people to do that except after weeks of learning how. She has a very comforting presence. In case you haven’t read her post from last week, she wants me to live to 80 with her, which means she will have to be my man-servant for quite some time.

If I want to live to 80 I will likely start the Exon-skipping treatment even if I have to install a port for easy IV access, plus monthly blood work. It kind of scares me, even though it’s not supposed to be a painful medical body modification. I think, in the long run, it will be worth it no matter the pain. I do want to live longer. For the longest time I didn’t think I would live past 40. That was just the age I decided my disease would kill me at. If I died at 40 I would miss out on a lot of experiences, which would suck, especially since I’m an atheist and don’t believe there’s anything after death. Not even reincarnation. Not that I’m afraid of dying, since I believe that once I die there’s nothing, no consciousness that can be sad or worried about being dead. What I am afraid of is a long, drawn out and painful death.

Luckily, despite my similarities to the fish from Spongebob, every night I fall asleep next to R. I hope to spend the rest of my fragile life doing things like that, that bring me joy. I want to spend time/work with people who are careful and understanding of my body, whether I live to 40 or to 80.

~Z

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