Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:
1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.
2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.
3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think. Read More>