I See It First

One of my home care workers is here. She has been helping me with range of motion exercises. It's hard to believe that exercises on my body primarily done by someone other than me can cause me to be so tired at the end of it all. They do make me tired, even though most of what I do is lie there and get stretched. There is some involvement on my part, holding my legs when asked and turning my body as needed. The whole process means I am tense around flopping legs and sliding about. Still, I am not working that hard yet I am tired.

That's one of the problems with ALS. You get tired. You don't look tired but you get there very quickly. My exhaustion level is high and I wear out very quickly, almost without warning. Those who are with me a lot see it easily; they know the signs and symptoms of my tiredness. They also know that I am stubborn, not willing to give into this disease, fighting every last bit of it in order to maintain what remains of my dignity and independence.

It becomes more annoying when I meet people who don't know me that well, or people who see me rarely. They see the energetic guy in the wheelchair without knowing that the energy fades quickly, that the exhaustion comes at a moments notice. They comment on how good I am looking, how well I appear to be, except for the wheelchair, of course. What they do not see are the hidden ravages of this illness, the invisible parts. They don't see the increased need for sleep, the constant sense of tiredness, the aching in my muscles. I know they don't know. I know they are trying to find something positive to say, that I actually do look pretty good on the outside, other than the wheelchair.

The reality, of course, is substantially different. The outward manifestations of ALS come on so gradually that they are almost unnoticed. By the time you can see the damage, the need for a cane or the limp, the use of the wheelchair or the loss of speech, the disease has done the vast majority of the damage it can do. We compensate for so many of these changes, unintentionally hiding them, both from ourselves and from those around us. We do things differently, inadvertently masking the damage until there is no way to do the things at all. Then others can see the difference.

By the time you can see it, I have been dealing with it for a long time. By the time you see my hands fail, I have been noticing the clumsiness for many months. By the time you see me limp, I've felt the weakness in my legs for many months. By the time you see me unable to push my wheelchair, I've been struggling with tired arms and shoulders for many months. The problem is that I am the only one who sees it. Just me, alone. That's the real terror of this disease.