Everything has changed. Nothing has changed. Sometimes it’s the spring of happiness, sometimes it’s the winter of despair. (a little adaptation of Dickens to be all artistic and s…) Weakness and loss of ability is progressing very nicely in my arms. They’ve become far too heavy to hold up unless I keep them right next to me, thus, I can’t reach for things much. Legs completed the journey some time ago. I can’t put my hands on top of my head now without crawling my fingers up my scalp, yet, this is surprisingly not nearly as significant as crossing certain thresholds of independence of the past. Loss is measured in steps, not a straight line. As I alluded to before, degrees of weakness is just a measurement, whereas the end of doing something that was important in your life is hard to take. When there is a rest from that, things feel better. The latest test results now qualify me for breathing assist machines. Though I don’t seem to need the machines yet, conversation is starting to get a little taxing at times and I can tell that breathing in certain situations is getting harder.
It’s funny how some of the earlier losses were just as hard as these, being competitive to not being competitive, being independent to not being independent. Those were the things you worked a lifetime building. Those were the things that made you proud. Dwelling on what you used to be able to do, what you wish you could do, is a good way to torment yourself. I actually don’t do much of that anymore. One gets tired of worrying about things, but occasionally, you still have to. Recently has been hard. Inventing a new meaning is hard, at least for me. Luckily, with a wonderful wife, family and friends, bad times are very much a minority.
PS About a week ago, I had my once every three month ALS clinic visit. In the lunchroom afterwards, I once again met the older gentleman from my earlier story, Becoming That Other Person. He is still walking along with his rolling walker, just a little more slowly. He is one of the rare slow progressors. We’ve traded places.
We love you, David.
Although it must be unimaginably difficult for you to write posts such as this one, we appreciate knowing where you are in the progress of this disease. It’s hard to ask outright about such things.