Three days ago my friend J. returned to Chicago. This is the same J. who comforted me after the first hospitalization I had related to EDS. I've always been closer to her than I realized.
We roamed the city and the surrounding 'burbs together, going from museum, to dinner, to a surprisingly chilled-out jazz club with awesome cocktails and all the esoteric little shops that line Coventry Street. It brought back fond memories of being a little girl and going all those places with my father. Being the first born I was the experiment and my father was going to give me 'culture' and an appreciation for things outside of my realm of experience.
I was very happy to see J. and promised to come back to Chicago in January, when the weather was miserable and the flights were cheap.
Earlier this week I finally got around to getting a iron transfusion. I've been anemic for quite some time and no one knows why. I failed at raising my iron through diet and can't take iron pills so putting iron into my veins was the next course of action.
At the appointment I was given a thorough questionnaire to answer. one of the questions was 'are you generally happy?' I paused over it for a long time.
Then I circled 'no.'
I am not generally happy, though I am at times, happy. I am not generally sad either though.
I guess I'm resigned. I'm pessimistic. I'm weary. I don't have any expectation of a happy life anymore. Well, what I defined as a happy life. There won't be any globe-trotting, teaching English as a second language in the Far East. I can't imagine life a tenured professor, happily married, a child, two dogs and a house somewhere in the northeastern part of the country, nestled in a grove of tall pines.
Which isn't to say that I think I'll die alone in a run-down neighborhood and my cats will eat my body either.
Somewhere in the middle. Which to me, is just as repellent as the idea of having cats eat my dead body.
Because then, what was all my hard work for?
Just before I graduated, and right before I spent a couple of months housebound, one of my professors sent me an e-mail to let me know how disappointed she was in my performance.
I was rightly furious, but I can't say I don't feel that way towards myself sometimes.
My anger circles from the doctors who didn't believe as a dislocation-prone child to the doctors who told me I was making it up for attention, but it never fails to end up directed right back at me.
Why didn't I insist? Why didn't I ask to see an ombudsman? Why didn't I transfer hospitals or invoke my Medicare right to be treated adequately? Why are my genes all fucked up? Why did I have to spend all this time thinking I was intrinsically lazy or flaky when I was really sick?
In light of that last statement I've had a lifetime of experience at blaming myself for things that aren't my fault.
I want to put all this out of my mind. I want this guy to call me so we can go to lunch. Or I want to go to lunch with my other guy friend who I still do have a crush on.
I'm tired of feeling angry and ashamed and sick. When I am happy, the happiness has to elbow its way around these omnipresent negative emotions and is often much diminished by the time I feel it.
The local community college has a part-time teaching position open which I am psyching myself out repeatedly about. Could I? Could I possibly? Or is this going to be retread of the time when I set up an interview and then went shopping for a decent pair of pants (I'd dropped two sizes) and ended up in the hospital for five days, from the exertion of shopping for two hours.
If I get hired, am I going to have to excuse myself from class to run to bathroom and dry heave or vomit like I did in my aforementioned professor's class?
Hanging out with J. taught me a lesson about my energy. I get about three days of 'push.' The fourth day is 'crash.'
After days of obsessing I can only conclude my ability to do this job is contingent on two things: the nature of my schedule and how much they are willing to accommodate me.
So many people treat work as the goal, including me. I'm falling all over myself.
I'll do anything, anything to feel better, even if it's by just a little. Now I'm saving up for waist high compression stockings and an abdominal binder. The compression is the strongest available. That should help, right? Also, medicine to prevent migraines. Doing pilates four times a week instead of two. Getting a membership to the city's indoor pool and doing water aerobics for two more days a week. And I really hope to get ring splints so my hands won't ache so badly, at least five of them, for the worst behaving joints. Forearm crutches to get some of the weight of my infernal hips.
I talked to my mother late last night. I was scrubbing the scratches in my wood floor with walnuts (this works very well.) I was also sanding paint off the baseboards and cleaning spilled paint off the floor with nail polish remover. Earlier I had finished putting a second coat of paint on my desk and and painting over the freshly spackled and sanded holes that were left behind when I took down my ancient blinds. I was trying to set my mind at ease, but I was really only succeeding in upsetting my shoulders.
My mother said I was afraid and that my fear was making me unhappy and making me feel as if I had no future. She's right I think, but I don't know how not to be afraid. Especially since my doctors are spectacularly unconcerned with setting my mind at ease. They just keep trying to tell me that this shouldn't affect me so much, I'll grow out of it (really?), I'll be fine, it can't be that bad.
When I'm the one who knows the most about my illness, how can I be reassured?
In the world of poetry, I spent September sending out a four poem bundle to about five different magazines. Choosing which to submit to is easy; I submit to magazines I really like. Especially if they pay.
Black Warrior Review rejected all four of the poems I submitted with the following note "...we were interested in it." That's...good, right? Typical rejection statement is 'This did not meet our needs at this time."