Can I Complain, Please?

I awoke this morning feeling almost normal, or as normal as one can feel with ALS. My lower regions seemed to be settling down; no emanations, no cramps. I did the toughest thing I have to do each day. I got out of bed and went to the bathroom. While seated there, I thought to myself how good it is to feel better. And I asked myself, "What do I have to complain about?" After all, I was eating, drinking, breathing, passing waste; I'd met all the requirements for living. That's good. Right?

No, I really don't have all that much to complain about; unless you count being terminally ill with an incurable disease, trapped in a wheelchair, unable to move my legs, increasingly becoming weaker in my arms. I guess I could complain about purple, swollen feet and the bleeders that sprout on me on a regular basis. Then again, that's not really something to complain about. It's just life, and the way it works for me now with ALS.

Of course there is the money side of things, something I feel I can complain about often. After all, I'm living on $1,600 a month, and my mortgage, condo fees, taxes and insurance come to about $1,400 a month. Then again, I have a roof over my head and, by virtue of going in arrears on my condo fees, I have enough for groceries, most times. With the help of Katherine and others, I make ends meet. It's just life, and the way it works for me now with ALS.

Now I really could complain about the limitations of life with ALS, about how I can't reach dishes past the first shelf, about how I need help to pick up even the least article off of the floor, about how my tailbone hurts from sitting on it all day, about how its becoming increasingly difficult for me to get in my truck and drive. But why? It's just life, and the way it works for me now with ALS.

So what can I complain about? I have a full wine rack, a full food cupboard, a full fridge, and a full freezer. I have a roof over my head, at least for now. While it's getting harder, I still can drive in my truck, still can get about in my power wheelchair, still can eat an ice cream and drink a beer. And it really doesn't do me a lot of good to complain. It's just life, and the way it works for me now with ALS.

I guess I really am just stuck with it, life with ALS. I could complain, but it won't do any good. Nothing will change if I complain, nothing will get different. Life with ALS will continue to be life for me. But sometimes, I really, really, really, really, feel like I might have something to complain about. And I want to complain. It's just life, and the way it works for me now with ALS.