Paying For Life

My friend Mike once said to me that he thought my meltdown days were closely linked to an event that drove home the reality of ALS. He is right again. Having recovered from a terribly emotional Saturday and Sunday, I look back and realize that my new stove came on Friday, the one with front knobs so I don't burn myself while cooking, and my new commode chair came on Friday as well.

The commode chair is the most hated of the many arrivals due to ALS. Most of the others offered some increase in both my quality of life and in my personal dignity, even if I didn't see it at the time. The dreaded commode chair is just the opposite. It is intended for me to shower in, when I can no longer sit in my shower on my own. It is a forward looking emplacement, one that will be needed as time goes by.

It's an ugly sucker, big and hospital looking, not the least shy about its brutal grey paint and the shit bucket that sits beneath the hole in the middle. It's a piece of clinical equipment, completely out of place in a home as warm and friendly as mine. It's just plain nasty, the worst possible reminder of the time to come when I will no longer be able to sit on the toilet, transfer to the shower bench, or even make it from my bedroom to my bathroom unaided. It's undignified; I hate it.

That most likely has a lot to do with how I was feeling this weekend, the anger hidden shallow within me. The confrontation of it, the cruelty of having to deal with another piece of gear focused on my ever increasing inability, on my continual debilitation. I was angry on Saturday, even worse on Saturday night, and totally distraught by Sunday morning. It was another reminder of how much I hate my life with this disease, how much I hate ALS in my life.

Even the new stove reminds me of my limitations, the continual failure of my body. I have to have it; I don't want it. It's not a nice addition to my home, it's a requirement so I can live with ALS, another bloody expense that I didn't want to take on. It's like my coming road trip. I am going because I cannot stay. I want to enjoy it, to find pleasure in a bad circumstance. But it will cost, and I am running out of ability to pay, not just in money, but in emotion too.