Why am I here? Why am I still alive while so many others die around me? What is the purpose in me keeping this grotesque thing which once was a body, going? I can't move my legs. My arms are so weak that wheeling up and down even a short stretch of sidewalk is almost too much for me. I can barely dress myself, barely make any sort of a transfer out of my wheelchair, barely sit up straight.
The other evening while trying to take my shirt off, I got it halfway, over my head and covering my face, when I lost my balance and fell over backwards. There I was, sweaty shirt all over me, my arms stuck, unable to pull hard enough to defeat the stick of the shirt. I rolled one way, but couldn't gain any traction. I rolled the other way, still unable to break the shirt free of my skin. Finally, even though I couldn't really see what I was doing, I managed to grab the edge of the mattress, then my M-rail, and pull myself vertical. After a rest period, I tried again with the shirt. Success, matched with exhaustion.
Yesterday while transferring from my power wheelchair to my manual chair, my transfer board slipped off the PWC. There I was, halfway along the board, barely in place on my manual chair. It took me nearly a half hour of wiggling and shifting to get my fat ass along the board and into a place where I could move my manual chair. I rolled over to my couch, lifted the transfer board into place, and transferred. Then I did nothing for almost an hour, too exhausted to even move. After a long rest, I got back into my manual chair and got on with my day.
That exhausted feeling haunted me all evening, well into my sleep. I lacked energy for breathing, for moving, for speech. For the first time ever I went to bed wondering if I would be awake in the morning. I wondered if I would keep breathing all night. I did, but my shoulders still hurt, my arms still hurt, and I feel more than just a little defeated.
Here is the odd thing. I am a tough son-of-a-bitch. Sorry, Mom; no implications on you at all. It's me. Even in a tremendously difficult situation, I know that a foot of movement is only 12 one inch moves, or 24 half inch moves, or 48 quarter inch moves. So I start with that small part and do it until I make the full foot. But even with this, I feel like ALS is winning. I guess it is. I don't like it.
While you are stuck in the shirt and flailing and by yourself, are you more mad or do you feel more like crying? Who to blame? It's inconceivable not to go to work every day like everybody else, but even more inconceivable that it's completely unimaginablethat you can't get a shirt on. People see the obvious things or the obvious exhaustion, but they don't see how hard it is to get dressed or how hard it is to lift up a simple object. They don't see the constant comparison to "before" and to everybody else.
ReplyDeleteOf course, you're an exception and your strength, emotionally physically and mentally, is your exception.