Money. That’s what I planned to write about today except that last night I was in intense unrelenting pain. This was definitely not part of The Plan. According to The Plan Saturday morning I should have a complete normal BP and heart rate. And I did. And then, just like the week before, the crash. You hear about a tribe in a desert that plays a game where they whack a goat’s head with a stick from the back of a horse: I was the goat’s head. I am now wondering if that moment of feeling pretty good and getting normal readings is like standing on a building site and having a wrecking ball smash into you throwing you at a brick wall 40 feet away. Yes, first it is pure agony from the impact of the wrecking ball, then as that ebbs and you feel the wind whistling around you think, “Okay, that was bad, but the worst is over and it actually is quite bearable.” Then you hit the wall.
Apparently the one thing I kept moaning/screaming was, “What did I do?” or as I lost functional speech, “Why?” Now this wasn’t the abstract philosophical “Why?” as in “Why do children suffer?” but a very specific extension of the thought that I had done EVERYTHING right. I had eaten what I was supposed to eat, I had drunk the right amount of water, I had exercised, I ate fiber, I had done everything that we are told that should not grant us but GUARENTEE us to feel good. So what did I do, did I not love God enough, did I not eat prunes when I should? I just couldn’t accept, seeing three decades of TV, newspapers and articles that inform, you get cavities because you eat candy; that you feel sluggish because you don’t exercise enough and you are depressed because you don’t have enough serotonin so take this pill. See, if you feel X it is because Y and the solution to all of it is to do Q and R and every other week take some V. There is this law taught to us, written into us, into our culture, our religion, even our view of the worth of each other. So if person A is homeless then there is a chain of events which led to it: decisions which could have been rethought, actions averted because we can’t accept that you wake up homeless (unless you just told your parents you are gay – but still, you said G so now you are H).
I was in a level of pain that, though I had taken the maximum number of pain pills, I just wanted to scream and keep screaming. Only I was more terrified that such concentrated stretching of muscles might tear and make the pain even more intense. And I couldn’t accept that I couldn’t find SOME reason, some THING I had done, or not done to trigger this, to cause it. That I didn’t come to bed soon enough, or I didn’t take enough oxygen earlier in the day. “What did I do?” and “Why?” I don’t know how many times I actually spoke them but I asked that a lot last night. Lot of pain. At one point I remember thinking, “They say third degree burn victims have the worst pain; Let’s set my arm on fire and see if that’s right.”
See, I am finally starting to get what having an autonomic dysfunction means. It means that things just happen. Indeed, no one really knows for sure WHAT happens or why. Maybe last night I had many hours of erratic heart beats, maybe I didn’t have proper lung/oxygen conversion and all my muscles thought THEY were dying from oxygen starvation and really wanted to let me know (like I could do anything!). I don’t know and the realization that there was absolutely nothing I did, nothing I could have done and that is what this disease, this “disorder” does is starting to come home to roost. The idea that there are times I can do NOTHING and I will continue to suffer because that moment an autonomic function decided to break down all the muscles on the left side of my body is pretty damn terrifying. I mean I know what a cancer cell is; as bad as it is, it is a survivor, a fucked up cell that lives when it should die and replicates and replicates. I can understand that. I understand Lymes, and MS and Parkinson’s. But this, I don’t get it. My autonomic system changed from Albert Einstein to 99 monkeys banging on typewriters. No, no, no….that’s just not right. What am I supposed to do? Do I send jolts of electricity through me and hope for a short out? Or just writhe and moan and scream “Why?”
I wrote to a friend that I sometimes/often wish that I could put my hand on someone and have them feel what I feel. They said that is normal, that I want people to understand exactly how I feel. I’m afraid they think too well of me. I want to put my hand on someone, someone who is dismissing me and have them feel exactly what I feel because I want to see if their heart stops from the pain. I want to see the terror in their eyes as all the different pains I feel constantly starts to wash over them. I want them to know how turning over in bed can have all the focus, concentration, extreme effort and pain of a speed ascent of a rock climb. Taste that you fucker!
I guess I am hitting one of the stages of grief/acceptance, whatever. Or I am cranky. I don’t trust able bodied people anymore. I hate the memories of myself. At least I pushed myself to the limit, or at least what I thought was the limit; I can accept that. I can’t accept how I walked around blind to what other people, people with disabilities were going through everyday. I had friends with disabilities, I still do, but I never knew. I mean, I kind of thought about it while going for a jog maybe, but I never KNEW. And I guess now that I do, I’m a little angry; at myself and at all those others who cannot see, who cannot hear, who do not know. So I want to “share” with them. Condescend to me? Look down on me? Then come, take my hand; BURN WITH ME.
Do you want to see the Dance Macabre? My address is…… Did you know that term came from the Black Plague, that the pustules were so unbearably painful that as agonizing as it was to move, it was impossible to lie still unless tied down. So in the final stage, they twitched, and moaned (often the tongue was too swollen for much more) and “danced” in the streets till they died. Okay, I am starting to get it. I do everything perfect, eat my required servings of vegetables and fruits and drink my 8 glasses of water a day and anything can happen anyway. I am Chaos Theory as it applies to our understanding of body function. I won’t let that define me. I can’t incorporate it into me and I can’t ignore it. I won’t be silent about it though; I won’t hide it. I had to confront my parents today; they wouldn’t use the term autonomic dysfunction or Shy-Dragers. “That’s what it is, EVERYONE agrees now.” They said they were holding out, hoping for something else. “Well,” I said, “Many think I have several OTHER chronic or autoimmune diseases?” No, that wasn’t what they wanted to hear. They were hoping for the best. The best right now is finding some sort of medications to slow things down or contain them or make the pain less. Do they think I don’t have those times when I say, “Okay, it is time to wake up now!” Dad, this isn’t like dressing goth or moving to the UK. This isn’t me being rebellious or difficult: I didn’t choose it; I didn’t court it; it came to me.
It was sometime after 2:00 am and I was gasping to try and breathe. “I...love...you.” Linda was holding my hand. “I....love...you..”
“You aren’t dying on me tonight.” She said, “You aren’t dying tonight.”
“Fuck,” I thought. I could only see out of one eye, I didn’t know if my arms were in rigor or my hands were claws, another wave hit and a piece of stucco on the wall was all I could see, “I...love....you..” I said.
“God, please, let me die.” I thought, “Please.”
Linda said when she saw me this morning she didn’t think I would be able to do anything today. “Air Hockey!” I whispered in her ear. She helped me dress. It took an hour. She pushed me there. If my health improved dramatically I could say “I felt crap.” After the first point I passed some time with my head on the Air Hockey table. I think Linda put me on oxygen. She thought we should go. No. It was Air Hockey day. The oxygen helped. She got ahead. I started getting angle shots and I tied up at 5-5. The table shut off just as my last shot clinked home. Linda denies I won: “The time was up!”
Night approaches now and it is going to be another rough one. But I played Air Hockey today. Will it be enough to hold onto? I don’t think so....but it’s something.
3 hours ago