CHAPTER 17 WHAT DOES 'YOU' MEAN - THE MENTAL VERSUS THE PHYSICAL

My body changed in a few hours, but my mind still has not fully accepted it. I still can move normally in my dreams, for example. A really bizarre thing happens when an itch wakes me up. I start out in the dream state, where everything is functional. I think to myself, just reach up there and scratch it. There is confusion when nothing happens. Then the logical part of my brain begins to wake up and tries to convince the dream side I am paralyzed. Eventually I wake up and realize I can't scratch the itch.

The first time this happened, it freaked me out. I thought I was going crazy. After it kept happening, though, with no lasting effect, I realized it must just be how the brain works - in a dream state I revert to a 'normal' me. I also see the world as if I can still effect change, but, of course, I cannot. It has been four years - I wonder if my mind will ever come to grips with what happened. In some ways, I hope it never does. At least I can still run in my dreams.

In the awake state, your body is no longer part of 'you' in the normal sense, because you can't control it. When someone says "Move your leg," they might as well be talking about the chair leg across the room - it feels to be as much a part of you as the leg that happens to be attached to your body. Perhaps the worst thing I can do is move something once when asked, especially under special circumstances, like therapy. The reason is that people then think you can always do it and think that if they yell at you you will remember how. Certain things are very fickle, and only work sporadically, beyond your control. An example for me is opening my mouth so someone can brush my teeth. Sometimes I can and sometimes I can't. This gives the impression that when I don't, it is because I don't want to. Every morning. , I get yelled at to open my mouth, as if I don't know to try. It is maddening, but I can't do anything.

Handicapped people are often seen as selfish with their many demands, but it is more complicated than that. Since I can't control my body, I often ask for things for it because I know it will cause trouble if I don't. For example, I may feel my legs about to straighten and ask for a blanket because I know how much work it creates when they stiffen. I may even become impatient if the person takes their time. What I am really trying to do is save them more trouble later, almost as if the legs aren't mine but I know what will happen if they don't cover them RIGHT NOW. I am perceived as being selfish because I can't explain all of this and because the legs are perceived as being part of me. They are not, I am only trying to make everyone's life easier. Sometimes it is better to keep quiet than to be perceived as selfish, and just let what happens happen. Since all I can do without help is lie in bed and eventually die from pneumonia, I NEED others to help me get up and do everything for me, and that is eventually viewed as selfish. Never mind what I WANT to help with - I can't.

Selfishness cuts both ways. Someone that stops feeding me to talk about something trivial may think nothing of it. Yet to me it appears very selfish - they dangle delisciuos food in front of a hungry man because THEY want to yap. It comes down to basic needs, and most people take care of their own needs first, regardless of how much pain I might be in.

I put a new standard for selfishness on others, too, probably unfairly. I need so much help, that unless someone constantly pays attention to what my physical body needs, I often suffer. They appear to be selfish to me, although all they are just doing what they want to do. Some people have a knack for knowing what I need. Women are more likely to do this than men, although some men do it very well. People trained in healthcare are most likely to help, because they know what I'm going through, but even they don't all get it. Kids can actually be very observant, but they often have short attention spans. No one devotes time to me consistently like Jane, my wife. I think we are both mad that it happened and often think of happier times together. What is most frustrating is the lack of choice we had. If you ever start to take life for granted, don't. It can change in a second. Treasure every minute.