I Wish I Was Better

When you live with ALS, there are watershed days, those seminal days where you realize something significant has changed in your life and abilities. When I could no longer stand on my own and had to commit to a wheelchair, that was one of those days. When I no longer had the energy or focus to work at my job, that was one of those days. There have been many others; they are coming thick and fast now.

Today is another one, one of many recently. Over the last few months I have seen my ability to drive wither away. I have lost the strength needed to put things up on shelves or down on the floor. I can no longer lift a wine kit or carboy. Many of these are just passages; some stand out as significant, like today. This is the day when, on balance, I start to use my power wheelchair more than my manual wheelchair, even here in my apartment.

This morning, I asked Olga to help me get directly into the PWC. I meant one less transfer, sling and all. I don't know if I will even use my manual chair today. Of late I have been finding it much simpler to stay in the power chair, rather than transfer to the manual chair. It handles the lumps and bumps here at home jsut fine. If I want to dash across the street to the mall, I am already in the chair. It goes over the carpet in the spare bedroom as it it wasn't there. It's just easier for me.

It is a principal theme for me these days, minimizing the effort in all things, even though doing a task the easy way may not be the way I want it done. I have to focus on getting the most out of my day. Not pushing myself around my apartment is one step, another of many, in that process. It just makes sense, even if it is concession to another loss, theft of another ability by ALS.

I don't feel all bad about this change, this watershed moment, this new reality. My PWC is a powerful tool, lent to me by the ALS Society of Alberta. Without it, I would be condemned to stay in my apartment all the time, never venturing out of doos, never doing my own shopping.Without it there would be no Costco run, no dashing up to Walmart or Coop, no heading out on my own via C-Train. The change to the PWC is both a win and a loss, a plus side change for conserving my energy, a minus side change as I recognize another crucial failure of my arm muscles.

I appreciate the Society. They have been good to me. I appreciate the freedom of my PWC. I appreciate the way it makes my life easier. I just wish I didn\t have ALS, didn't have to go through this change. I just wish I was better.