You Can't See It Yet

ALS is not a painless disease yet the disease itself causes no pain. Here I sit this morning, looking out of my window, sitting in my wheelchair, watching the cold prairie with pick up flakes of snow and blow them by. As I sit, my lower back is aching, my left wrist is aching, my biceps left and right are sore. I cannot understand how I can hurt my back while sitting in a wheelchair, but I have. I understand completely why my arms ache, why my wrist is sore.

With the loss of my legs, my arms took over. They have been tired for many months. Now they are a different kind of tired. They hurt because they are getting weaker and doing the same activities of daily living demands more of them. While one part of my arm weakens, another takes over to pick up the slack. While my bicep and lower arm muscles are less capable, my shoulder and wrist work harder to do the lifting, pushing, pulling, grabbing.

This overworking of one set of muscles to compensate for the loss of others leads to pain. It's not ALS pain, it's pain from working to overcome the effects of ALS. The disease is not hurting me; I am hurting me as I work to do the things I want to do with muscles that continue to decline daily in their ability and strength. If I were healthy, I would say I was working my muscles too hard, that I was out of shape, that my arms needed exercise. These were the same thoughts I had when I started to lose my legs. Now I know what is really happening.

My arms hurt because I have ALS, but not from the ALS. They hurt because they are weaker and my demands on them do not change. I still want to get around. I must say, with a sense of the ironic humour within me, that I have noticed one thing in particular. When I am in my wheelchair, rolling my way through the mall, I now tend to slowly drift left, as my right arm overpowers my left. This means I have to correct for the drift, just like when I was sailing.

It is these small things that I see, things that others do not see. It is these small things that tell me what is happening. They are invisible to most people, too small for others to notice. You cannot see me making the choice to pick something up more carefully. You wouldn't see the extra push on my right hand or the slower lift on my left arm as I force myself out of my wheelchair for transfers or to stand. You can't see the small ache, the low pain, the willingness to stop where in the past I would continue. But it is there.