No Wonder

I am, once again, writing while sitting up in my bed, although this time I am awake at something closely resembling a more normal hour. I've been awake for a while, reading the news online, checking emails and Facebook. I should probably get used to this; there will come a day soon enough when I will spend most of my days, if not all of them, trapped in my bed.

You would think that a future like that would be enough to motivate me to get up; it's not. I am enjoying sitting here, contemplating, reading and thinking about my world and my life. It's given me a few minutes to think about the oddness of ALS, the strange way in which it attacks and paralyzes. It's just so strange. It is not the paralysis of a spinal cord injury, not a complete paralysis. It's a slow, creeping kind of paralysis, where you can still move some muscles while others are completely incapable.

My leg muscles are a good example of this oddity. As I sit here, my legs are straight out in front of me, having been positioned so through the use of my arms and hands. The major muscles in my upper and lower legs are completely non-functioning. Yet there is enough in some of the muscles around my knees to twitch my knee joint and the back of my upper legs. This, of course, by no means implies usability. Perhaps the only thing it does is allow for the cramping that is a part of this nasty disease.

My feet are another good example of the weirdness of ALS. My toes are forever curled forwards, like the claws of a bird, immobile and curved in death. Yet while my left foot is frozen in its downward curl, the toes on my right foot can still lift up, somewhat. The big toe on my right foot responds to no requests for movement upwards nor does my baby toe, just the three middle ones.

Even in their inability to move upwards, the toes on both feet can tap downwards on request. I can even get a tight enough downward push to give myself a cramp in the ball of my foot, whether left or right. In other words, there is enough muscle movement to cause me discomfort, or to allow me to tap along with the music the tiniest bit, but not enough to straighten out my feet when I put shoes on.

All in all, it's just difficult. I am a paraplegic who can wiggle some of my toes; a paraplegic who can twitch his knees; a paraplegic who is slowly turning into a quadriplegic. It's such a strange disease. No wonder they can't figure it out.