I'm having trouble writing today. I'm shaking badly. My hope is that this will settle down shortly and I can move forward with my day. I've been waiting a couple of hours now; soon, please, soon.
Today as I lay in bed, I was watching the fasiculations in my left arm ripple the muscles up and down underneath my skin. I made no effort to stop them; there is no point. I have little or no control over them regardless. They start when they start and they stop when they stop. The only time I don't really see them is when I am actually using my muscles for something, for example, typing. When my arms are at rest, I get fasiculations. That's it.
The other day I was reading an online article in Vice Magazine about the best way to die. The article immediately took suicide off the table. The author was focusing on natural death. Before getting into his rather ridiculous list of the ways we most commonly die, he took the time to note the worst way to die. He referenced an earlier Vice article covering that subject, with the conclusion that the worst way to die is slowly, with something that leaves you in hospital care for your final days.
That's ALS. I get to live while I watch my muscles slowly succumb to the loss of motor neurons. I get to experience the pain of muscle cramps over and over again. I get to suffer through the shaking, time after time. I get to do this for years on end, without redemption or relief. The only time I truly escape this disease is when I sleep. Perhaps that's why I sleep so much.
Some would suggest that the amount I sleep is indicative of depression. Well, I sure as shit have something to be depressed about. However most PALS go through this constant exhaustion, this constant need for sleep. Most of us are worn out completely by this disease. So for entertainment, we stay in bed and watch our fasiculations, wonder about our shaking, and hope time goes by quickly.
I am not depressed. I have ALS. That's why I stay in bed. The effort of getting out of bed takes so much out of me that, once complete, I simply want to go back to bed. At least there I can watch my arm muscles jerk under my skin. At least there I can close my eyes and try to calm the shaking. At least there I can rest, perhaps sleep, and for a moment at least I can pretend I am not dying the worst way possible.
I lost my ability to write some time back, now I'm loosing my ability to type. It's frustrating but we most find better ways to cope with this. I find enjoyment in music, in movies, thinking of real good people in my life, living my memories and saying to my self "I can and I will".
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