The Morning After Clinic

Inevitably, the day after going to the ALS clinic I have a rough time. I think it has to do with the intensity of the day, all the focus on what is happening to my body, all the news good and bad, all the questions and answers. It's actually a tough day psychologically, even it the outcome of the day is relatively good news.

I say "relatively good news" because no matter what the results of all the measurements, no matter what the answers are to all the questions, no matter what the doctors have to say, I still have ALS, a terminal, untreatable, incurable illness. The outcome of the day is always the same; I am not getting better, no matter what.

So I look for the bright spots, words like "slowly" and "unchanged". I'm careful around the word "normal"; it's so subjective. I've lost a good deal of strength in my upper body and core muscles. I can tell when I go to pick things up or transfer. Yet the doctors cannot see that loss from what I once was because they are measuring from what they see as normal. It would be fair to say that my strength was somewhat above normal before all of this.

The best example of this was the female neurologist who first saw me yesterday. She was a slight young woman, tiny, the kind that I would once have lifted up with one arm. She does the strength test in my arms and cannot move them. Then my regular neurologist comes in and does the strength test. It hurt when he pushed as I tried to push back. I couldn't match him, something I once did easily. Picking up up a case of wine, or a new wine kit, was once a one-handed affair for me. Now I cannot do it without help.

Today my arms still hurt. My back is sore just because; it happens. My eyes are watering from the smoke in the air notwithstanding that all of my windows are closed. And I know, regardless of anything else, that I am weaker today. My strength may be going slowly, but go it does. I wish I could be more cheerful about all of this, recognizing how fortunate I am to have the time I have. I wish I could focus on all the good things in my life; there are plenty of them. But the day after clinic, I mostly feel like I have ALS.