I'm Not Really That Cheerful

I'm tired. My fingers hurt; arthritis or ALS, I'm not sure. My hands are weak, as are my arms. Typing is slowing down, my fine motor movements becoming increasingly difficult. The muscles in my right shoulder are in constant pain from muscle pulls as the few remaining work extra hard to accomplish what a collective of musculature once did for me. My neck is weakening, so my head feels extra heavy most of the time. I'm using the head rest on my wheelchair increasingly.

My HCA just left. I'm moving a bit slowly today, not responding as cheerfully or as quickly as usual. As she left, her comment was that I am usually such a cheerful person. I guess this is true, at least on the surface. Laugh and the world laughs with you. Cry and you cry alone. ALS is very much a "cry alone" kind of disease, so I constantly wear the mask of cheerfulness.

My reality is much darker, much more bleak. My predominant emotion these days is sadness, followed closely by immense frustration. Deep in the back of my emotional landscape is anger and bitterness, far enough back that most people don't see it, or feel it. But I do. I feel all of these things and more, all the while producing this false front of cheeriness and happiness in the face of tremendous destruction.

It's getting more difficult as I see more clearly my end of days. I count in days and weeks now, at best. While I want to live a long time, my reality is somewhat different. It's getting difficult to pick things up, such as a cup of water or coffee. I wear out easily when engaged in physical activity, so I don't get much done in a day. I'm now trapped in a wheelchair without a lift function, so everything above chest level is beyond me.

How do I feel? Not good. How do I keep going? I don't have much choice. Why do I seem so cheerful? What else should I do? Be grumpy, miserable? Should I let my frustrations spill out onto those around me? What I really should do is simply die. That would be the easiest solution. The problem is that I don't want to die. So the easy route is closed to me. I will take the more difficult road, living until I can live no longer, dealing with this devastated emotionaly landscape as well as I can.