Where I live

I wheeled down to the dvd rental place, had an argument which meant nothing and everything to me; a guy complained that ‘action films’ weren’t 'REAL'.

I told him, I’d try to make sure to have my next grand mal down here, since that seems to make people run like hell.

Then he got onto through guns somewhere, and this idea that if your heart stops, you die. I told him, “Yes, if it stops for like 2 MINUTES!” But no, he was convinced that if a valve stopped working in your heart you die, that your heart would EXPLODE! I told him, “put me on a monitor, if you want to see a heart stop.” My heart stops every day, it is part of the autonomic failure. And before that my heart beat so fast, it wasn’t pumping blood, and before THAT, I have a genetic condition which causes backflow in a valve. And between those, I have AV nodes in two different sections of my heart, which means two beats, or no beats, or a beat only on one side. And so to hear this person raving on because he felt his movies were “Accurate” enough, made me want to invite some EDS friends down and also the fact he seemed too DIM to understand that THESE ARE the actually conditions people live with, that people (like ME) do 10K races in wheelchair with. That people know SO LITTLE about disabilities and about how complicated the body can fail and you can still manage to live, that I felt even more alone. I struggled up the hill, I cried. I was too weak at 5:00 to get into bed unassisted.

Days like this I feel that sometimes the only person who really gets me is Death. And that he (or she) knows exactly what limits this body can take and pushes them again and again. And when I try to explain to people where I live. Where do I live? Okay, I had a connective tissue disorder my entire life which stopped me from being able to walk until my legs were operated on. Before that I was in pain that stopped me from sleeping and after that I was in constant pain. Pain that made me moan in my sleep. That was life. That was normal. That was jogging and playing the double bass until you couldn’t feel your arm and the bow fell out of your hand because your spine presses directly into your rib cage and there are nerves trapped there. Life.

Where I live now? It is not 10 times the pain, not 20 but often 30 to 40 times that level of that pain. I think of Cheryl and I wonder, how much more is her pain now to take a hike in the Hoh than her worse Ranger Training? I used to out-train everyone. People would be ill, looking at me, they would say, “You are insane McClung.” And I would be white from the pain and I would be standing there and I would say, “NOTHING is impossible.”

Now, now a “good” day is where I only bleed from one or two orifices. A good day is where the pain doesn’t make me pass out more than four or five times. A really good couple of days I don’t hallucinate from pain, or go into deep shock and STILL have to do what I need to in order to live. I don’t like talking about pain because pain is pain and everyone’s pain is equal, or individual. I am not trying to say, “Hey, I am the queen of pain hill!” What I am saying is I have had my limbs crushed in doors and NOT felt it because it couldn’t get through (turns out an air hockey puck at XX miles an hour to my fingernail tips did, for like, a minute – then it didn’t). See, I can fly OUT of my chair, bruise up half of my body (have strange bruises all over my left side which I can’t remember) and NOT feel it, not just because I can’t feel my body, but because SO WHAT. Drag me behind a car….so WHAT? I have my heart stop several times a day to a constricted vascular system. That used to send me to hospital, now it is under, “Irritating!”

I am sorry, you readers deserve better than this. But this is where I live. Today, in my condition, it was difficult to imagine me reaching New Years. I think, “Am I buying postcards that will arrive after I am dead?” Other days, the better days, there are more months. But it isn’t some imaginary far off “oh in six or 10 months or a year or two.” I will STARVE to death because you can now see my front and back of the pelvic bone as well as all my ribs and I eat what Linda eats. I will eventually/soon/already have the anemia count of someone with lymphoma. I can’t go to ER, I can’t go anywhere. I am OUT of time. I do postcards. I get frustrated. Read the last post again. There is something broken in me. It is part that says, “Nothing is impossible!” And it doesn’t mean I’m not going to die, it means I should ACT as if I am not going to die. It means I should sign up for boxing class when I haven’t been able to get out of bed for two days! And I can’t. I haven’t been able to smile. I wasn’t going to blog tonight. But then, I had made a commitment.