Moody retrospective

parade 92
Originally uploaded by Liz.

i drove to oakland today and had a fine time hanging out. I sort of wanted to be in the wheelchair because of hurting, and in it, i can get around easier. It hurts a lot to get up and down from chairs and i stupidly kept getting on the floor. But didn’t want to be in the chair, because I didn’t want to… i dunno… something… I just didn’t. I thought of how nice it would be to go to a cafe in SF on the way home with Moomin, but I didn’t do that either because I realized I might be at some kind of breaking point. And the thought of going to a new place seemed daunting; exhausting. Would I be able to get into the bathroom, would I have to get up and down, would I ask for help to get the chair out of my trunk and put it in again, all that sort of thing. So I did not. I went to E.’s 11th birthday party and went in the chair. I still got up and down a stupid amount and exhausted myself further. Around a lot of kids somehow it’s hard not to. I laid down on the couch for a while, which helped. So although I had a good time today… a beautiful day… under the surface I was also brooding a lot about what to do every step of the way. If I get up do i take the cane or do i try to walk without it and just limp? I dont’ know what’s best. I am trying to graduate from crutches to the cane. And then sometimes think “oh fuck it… i refuse to put any weight on this fucking leg.” and go back to the crutches for a while.

Pain made me cranky today, too.

Here is a photo of me from 1992. I was roller-skating nearly naked down Market Street and I had the most glorious wonderful free feeling you can ever imagine. Not only at the pride parade painfully ecstatic to be there but also feeling physically very powerful and relatively healthy. My asthma was under control.

I had spent much of 90 and 91 becoming increasingly unhealthy with chronic bronchitis. And some kind of hell was happening which was probably either a cyst or PID or kidney infection or some combination and which kept getting all sorts of contradictory diagnoses but I had weird trouble walking or doing stairs for some of that time (aside from the severe asthmatic interludes). And then it all started to get better. I had good jobs and was writing a lot.

A rare photo of D. who hates to have her photo taken because of her family history which I suppose I should not talk about so I won’t but it is something of a phobia. If she did not have to look directly at the camera then it would be okay. It is not nice to talk about people’s phobias… I hate it when people figure out mine and want to ask questions or tease me. Anyway, it’s funny to see old photos of her sometimes in the background and just recognize the way she stands or a particular arm movement from far away.

Anyway I was putting this photo to show my baseline of when i used to be not disabled but as I typed this I realized that there were so many times before when I was and it was destroying my life because I didn’t know how to cope or what to do. When me and M. first moved to Berkeley in 1991 and I couldnt manage the stairs in Pax House and we were in the attic! Oh, my god! the hell of peeing in a bucket and crying… because i couldn’t make it to the bathroom, which was down a flight of stairs. And we were so poor I also remember crying because I wished i could have some fruit juice. M. trying desperately to support us. The only way i got health care was through the ER at Alta Bates. We were 22.

I guess before that in TX I was healthy before the accident and before I developed the really bad asthma. I would ride my bike all over and I loved that feeling. Then the asthma and strange physical problems in my back and shoulder made it really hard to keep riding my bike and I couldn’t get to work or class sometimes. I had no idea what to do and doctor visits would result in nothing.

The allergist fiddled my inhalers every 6 weeks or so. steroids fixed me occasionally. finally, constant nebulizing kicked the asthma pretty well. i did quite a lot of nebulizer intal + albuterol + theophylline pills + antihistamines + some other inhaler maybe atrovent or something like that. But for years the bronchitis would come back and then i’d be messed up for maybe 6 weeks or until i got prednisone.

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