A Quiet Desperation

There's a quiet desperation that goes with this disease, a kind of constant background noise that affects everything you do, or try to do. It's not the big things that get to you, although they certainly have a big enough impact. It's the little things, the near constant stream of small reminders that you are changing, that you are no longer what you once were.

This morning I went to transfer from my bed into my wheelchair, a simple downhill shift which I have done hundreds of times before. I didn't quite make it, instead coming to rest on the wheel of my wheelchair then sliding unceremoniously into the chair. It's not a big moment. These things happen. It's just another one of the million little things that cut, constantly.

I shake. This is no big deal. Lots of people shake. It's not the shaking that gets to  me. It's the wondering. What will I spill next? I go to take a drink and my shaking is just enough to spill, just a little. I wonder if the soup will get from the bowl to my lips without half of it landing on my shirt. I have trouble typing sometimes, just often enough to make it annoying.

There are the many rest breaks that I need while getting dressed, moments of pause I never needed in the past. They are small moments which, when added together, lead to my ongoing conclusion that "nothing is easy, nothing is fast". Even the transfers to and from my bed, or to and from my couch, or into and out of my truck, require a rest break immediately after. It's not a long break, just a moment. It's a quiet kind of thing.

None of these things will go away. None of them will get better. All of them will get worse. The shaking is a result of weak muscles, so it will stop when I can no longer move the relevant muscles. The weakness is a result of working weak muscles. It will never stop, as long as I can move a muscle. The tiredness and exhaustion are just as much a part of my daily existence as is eating, drinking, or sleeping. That's what leads to this desperation, this damning acceptance; it's happening, it is going to happen, it will happen. There no way around it. The only way out is...