Tuesday, 1 April 2014

I Am Glad I Wear Clothes

I am writing late today. Having been out late last night I got home after midnight and did not get to sleep until around 1:00 AM. Add my minimum 10 hours of needed sleep and you get 11:00 AM. Throw in an extra hour of lying there, trying to get motivated to get out of bed, and suddenly it's noon. It's a good thing I don't have to go to work any more; it would ruin my evening social life.

As I arose this morning, I did one of the things I do periodically, a sort of dispassionate assessment of how my body looked, how it was faring against the ravages of ALS. I do this in as detached a manner as I can, looking at my physical form extant, the way it is today rather than the way it used to be or the way I suspect it will become. It is a difficult exercise.

I looked down at my feet, still swollen despite a full horizontal night which should have, in theory, allowed the pooled blood to return upwards in my arterial system, their colour a near iridescent purple flashing to white as I touched my toes and the arch of my foot. They have been this way for quite some time now; in fact I first wrote about this impact of ALS back in June of last year. Back then the swelling would usually go down as I slept; alas this does not happen any more. Compression socks are about $200 a pair for my situation, and none of this is covered by any insurance or other funding. No wonder they call this the Bankruptcy Disease.

My legs are truly misshapen these days. My calves are skinny although still retain something close to normal form. My thighs are completely flacid; where they approach my knees they taper unevenly to become abnormally skinny. The now dead muscles in my legs just flop where gravity takes them. Then I notice a new bruise on my legs, from whence I know not. This happens fairly often, that I do something normal, something common, and end up with a bruise. I have a couple on my stomach and one on my arm too.

Speaking of my stomach, it is still a Buddha belly. They want me to eat enough to stay alive yet I find this increasingly difficult to do thanks to a general loss of appetite. I am just not all that hungry these days. Yet with this loss of intake, my belly still seems to be large. It's kind of frustrating to lose weight everywhere except there.

While inspecting myself I noticed that I had punctured something again, most likely a small blood blister on my nether regions. I get these quite often, they are not uncommon. For most men these small blisters on their private parts simply go away; for me the rat poison means they pop, leaving small blood spots on my legs and underwear. It's just another ancillary benefit of ALS.

I look at my arms and see the loose skin now on both of them, not so loose as to be floppy, but with just the beginnings of puckering, looking rather like cellulite neath the skin. My arms are definitely skinnier than even six months ago, and certainly no where near what they were before ALS. I suspect the loss of my arms was going on last year while I thought nothing was happening, with losses so small as to be unmeasurable. Even now my FRS remains fairly stable. The losses in my arms are not enough to cause substantial failure yet, but it is coming. For today, they just look smaller and weaker.

Fortunately my neck and shoulders, while certainly engaged in this process, show no visible signs of failure yet. That will come eventually. For now I am grateful for what parts of me still work. The truly wonderful, and yet frustrating thing is that the part of me that works best is invisible, hidden inside my head. My mind is mostly intact, largely untouched by ALS. Yet that one strength cannot be seen.

After this exercise, I get dressed, relieved that my clothes will mask the reality of my fading physique, protecting me and all others from seeing the reality of what ALS has done to what was once a strong and powerful body. I am glad I wear clothes. It hides the damage.

1 comment:

  1. It is a hard thing to face our aging and diseased bodies in full daylight and remember how our bodies used to be so strong healthy, and virile we used to be. When you are with someone that loves you, they see past all that into your heart and soul.
    Even, just as a outsider, a friend, at first on Thursday I saw a man in a wheelchair,loud, bombastic and, forgive me, but kind of annoying. At the end of the night, I saw a man, not a wheelchair,and a caring human being who noticed a young lady,run off her feet, and in tears about the treatment she got. I no longer saw ALS, but compassion.