Most emails I send are addressed to fellow ALS patients, if only a few. Email has a certain covertness to it; physical discomforts are invisible to others, letting fantasy take over. Corresponding through email is very therapeutic for me, as is reading ALS Digest. Sadly, some of my peers have passed away recently.
Bad news first. Roland Remmerie (the Belgian gentleman who introduced me to most sites about ALS including the Digest) and another patient from physical therapy have died from ALS. It makes death seem more looming than ever. I immediately started getting my finances in order and wrote down what I want my funeral to look like. I still have an inner belief, a conviction that I will pull through. Don’t ask me how. Maybe it’s all wishful thinking, me avoiding the reality of my situation. And yet, the conviction is there.
Wednesday, April 21st
For the first time in a long while, I have the house to myself this morning. I put the music up as far as it can go. I have to say, it feels great. I feel euphoric, like when I managed to get out of bed all by myself last Monday. I’ve also been thinking alot about my visit to the World ALS Day. I think I was just curious. I kept comparing myself to other patients. Their images are still burnt in my mind, days later. Who was worse off than me, who was doing better, lots of self-pity, how very few of them had lost all three main functions (walking, talking, use of their arms), etc. I did get the email addresses of several peers. Of all of the things we talked about, I only remember the personal stuff.