The Latest

First nothing patters through my mind when the doctor says: “Have you heard of a Chiari Malformation? It’s very common really. Thee’s nothing to be worried about. We found it on your MRI.”

She says all of this very fast, and it slides out quickly like an eel. She sounds a little nervous, just like she is about to do a nervous sort of laugh, the sort of laugh that would be described as a chuckle on a novel or short story, and she would clear her throat here, just at this particular juncture in the conversation, to get ready for the next part.

Truthfully, I am annoyed. I had forgotten I had had an MRI, and was at work, and thought she was going to call me to ask about medication and diet changes she’d recommended, to which I was being “non-compliant.”

The MRI. Yes. A frantic Tuesday, it’s been a week, I had to take out all my piercings, and it was so fucking hot outside, all I was worried about was being in a calm, rested space so I could not tense up too much when I was in the machine. I tried not to worry too much about my new neighbor, who let me know if I saw him stumbling around, it wasn’t because he was drunk, it was because he had been freshly diagnosed with Huntington’s. Omen? No. Good luck. Only so many brain problems to go around, and I already have Bipolar Disorder.

I did all the right things. I took out my piercings. I washed up. I wore clean underwear. I did not eat or drink fluids for at least two to four hours before I for I got to my appointment. I arrived early enough to fill out all relevant paperwork. I read O Magazine, the proper choice for my gender and body presentation out of the selection offered.

When I got into the machine, I did not move, as told, even when it was so loud it scared me. I did not move when my hands got too hot from the pulsating magnets just behind the plastic tomb. I tried to sleep, as they  instructed.

I left, and thanked them as a good girl does. And I forgot all about it.

Until this doctor interrupted my very normal Monday morning.

She rushes on: So you will need another MRI. Sometimes this Chiari Malformation can lead to fluid build up that would make all of the medications we put you on not work. It means that part of your cerebellum is jutting down into the spinal column, and it builds up pressure in your brain. This would change the course of treatment. This is a congenital malformation, you got it at birth. So is that second MRI ok with you? Did you hve any questions? No, Ok then, have a good day.

A few seconds later, I text this information to N.

And I sit for a few minutes and think.

I think of nothing. I think of driving around town. I think of getting ice cream. I think of bubbles. I really think of nothing.

N and I have a joking conversation about the diagnosis. I’m not sure her mind goes as quickly to where mine goes when it eventually starts turning. Mine goes blank to protect me from where it is begining to roil:

Fluid on the brain.

That’s not good.

Pressure on the brain.

Also not good.

What do they do for that?

Surgery probably.

She wants another MRI. They must be looking for that fluid. Or something.

Surgery. Brain surgery? WTF. I can’t have brain surgery. I’ve started a new job, I have no family now, I’m in graduate school and I’ve already spent too much in loans to quit, I have a new puppy, N deserves better for about 8,000 reasons, I’ll be broke and lose my home and my car, it won’t work, and I’ll have to heave repeat surgeries, and your relationship will turn into one of inegalitarian pity, and, and, and.

And then I think, maybe I wouldn’t need surgery. But I would need constant checking. I will always need to be careful of my head and neck. I’ve already taken enough blows to the head, neck and shoulders — and engaged in neck adjustments with Chirporactic care, that I probably triggered my condition symptomatic. And there would be constant pain anyway. I’m already in back pain, face pain and head pain daily. Some days are worse than others, and now that this has started, it probably will progress. Which is what will happen if don’t have surgery.

So I call the doctor back with my questions.

She is angry I’ve called her back on a private line. I hit redial on my cell, got her directly. She answers my questions, and informs me my condition is not that impressive. She rarely refers patients to surgery. She lets me know I should have a good day. She hangs up.

I don’t know where to turn. My MRI is on Tuesday. I imagine they are looking for a Syrinx, or Syringomyelia. The piercings will come out again. I’ll be clean and prompt, laying flat and still for the magic picture machine to image my insides.

I don’t know what my life holds anymore. Vacations? Work? Disability? School? Raising a dog? Health Insurance? Debt? Owning a home? My life is a leap from diagnosis to diagnosis, zigzagged and without a purposeful meaning. And while this diagnosis the newest and fanciest of the lot, this is just a drop in the bucket of derailmets my body has given me to what I had wanted for life. I don’t want for life anymore. I wait for it.


An Open Letter to the Well-Meaning Straight Community

Dear Well-Meaning Straight Community,

I would appreciate it if you would pretend to stop being so “open-minded” about queer folks, and either admit that you are bigoted, or truly accept the gays amongst you.

My partner and I, or I who am my partner’s girlfriend, have had to come up with specific language in order to describe our relationship to one another. We aren’t allowed to get married, have a civil union, share benefits without a huge legal hassle, if at all. This illegitimizes our relationship, should we wish to move into a diferent state of co-habitation. Personally, I think marriage is a heterosexist institution; been there, done that. But it has its perks. It would be nice to have the option.

When well-meaning straight people can’t even get my partner’s relationsbip to me, or mine to hir, right, it is further illegitimizing. Guess what? We sleep together on a regular basis, and even more than that, we like each other! We do things that other couples do, like buy groceries, clean up cat litter, (and argue about who is cleaning it up more), and talk work over dinner and dishes. This makes us a very real couple. We are 30 and 28 respectively. We are actually old enough to be people whose genitals aren’t confusing their hearts, if that actually means something or matters to you.

So this is to you, landlord, family, long-lost friend at the bar: We are not “buddies,” roommates, pals, friends, or other people who have known hir long enough to know hir before she came out. We are especially not those things when I or my partner have identified the other to you, and you continue to use some other word to describe us.

We are queer. We are a couple. If there was a permanently attached dick on the person whose gender presentation made the most sense, I am sure you’d have no problem using words like girlfriend, partner, couple, or living together. Which makes you well-meaning straight people a bit less well-meaning than you thought.