ALS has been described as a “glass coffin” illness. It deteriorates nearly all your muscles, but leaves your eyes, sensory nerves and brain alone. You can look around and see all the things you are missing out on, feel how uncomfortable you are lying there, and think about how much it sucks. If I survive it, I intend to start an unsuccessful progressive metal band called Glass Coffin that will only play Monday night gigs at out of the way clubs. That’s highly unlikely, however, which often leaves me thinking of the inevitable, and how that may go down.Read More »

How are you doing? is a question I dislike, especially if it comes with sincere eye contact and emphasis on the word “doing”. It forces me to assess how I’m doing, and the conclusion is always (surprise), Still shitty. Sometimes people ask me directly, How is your condition? and then I can say that out loud. Otherwise I don’t reflect on how I’m doing. I keep my head in the present for the most part, attending to whatever needs to be done right now. This is better for my mental state, but I can understand that people would like to know. They are concerned, and probably curious about what ALS is like beyond “shitty”. So here goes.Read More »