Now it’s a few days more than a year since I received the diagnosis and a good two years since I first suffered the symptoms of ALS. It may be worth knowing that, in my case, there is a steeper decline at this point. I could still get around at the Y with a walker, but it is very exhausting. My appetite is also declining. Chewing makes me break into a sweat but I can swallow without choking. My speech is normal. I am in control of my bowel movements and urination. I am annoyed that so few friends or colleagues ever visit, but I have been where they are in this thing, so I understand them. The truth is that we are like that. You can’t apply a higher standard to others than you have to yourself. The whole truth is that the dying are a bit of a nuisance. I’m not dissatisfied with the quality of love that I have been accorded in life. Did I seem to others and to my family too strong and too independent to crave a gentle hand on my shoulder? Only nurses seem to know or learn nowadays that touch and proximity can ease our suffering. I’m guessing that others think that physical touch is either maudlin, woefully inadequate, or condescending. It’s impossible to condescend to the dying, at least if you are sincere.
Signed,
Andrew (Weeks)
Normal Thoughts 