Not Much

The last few weeks and months have seen a dramatic decline in the ability of my arms.  The loss of strength has been substantial, having now reached the point where even lifting my arms is a challenge. To put this into practical perspective, three weeks ago I discovered I could no longer wash the top of my head. I won't say wash my hair; that would be hyperbole in the extreme. Two weeks ago I discovered that I could no longer wash under my armpits. Today, for example, my HCA had to hold up my arms while I tried to wash. Next week she will have to do the whole process for me. And this week I discovered I can no longer wash my face. I can't get my hands up there.

This is the phase of ALS I have dreaded the most, the loss of my arms and hands. This is where I will lose all independence, having to rely on someone else to perform the most basic of functions for me. I lost the ability to wipe my own ass quite some time ago. Now even personal hygiene is getting beyond my shattered abilities. If I am to continue living much longer, I am going to have to adjust to someone else handling pretty much everything for me, even cooking. I'll have to learn to drink wine and Scotch through a straw.

There are plenty of people living with these limitations, and more. I am not sure about their quality of life, but I suspect they have a very strong reason for living. I am not so sure about that for myself. I continually face the question about how long I want to live like this, how long I want to go on. I think about it every day now, about whether I have gone on far enough, whether I should call it a wrap.

The story of my life is coming to a slow, tormented conclusion. My last act is far too drawn out to still be engaging, either to myself or anyone else. I see very little reason for continuing to exist in this state. I am not sure what I have to live for these days. As to quality of life, well, it's going, going, going, gone. I am becoming less and less able, more and more disabled. I can do so little. So much of my doing requires the help of others. I feel like it is too much to ask. All the while the question of what next lingers before me. The best answer I can come up with is "not much".