A Flight of Ideas

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.

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.

Last night I snapped and it felt good.

It is officially summer.

I have endured outrage upon outrage from my homophobic, transphobic, fatphobic, conservative, fundamentalist Christian family in the past six months. I have suffered physical and emotional effects. It has taken a toll on me. I have not been quite myself. I have blamed myself, wondered what I did wrong, wallowed in self-pity.

And then I got the final rent check, less than the already-reduced rate that my sister and I agreed upon after she moved out in March. She included a nice little note about why the decreased amount was appropriate, and wished me luck in the future. A nice, little yearbook wrap-up to the disaster that started 12 months ago. “Stay cool! Have a great summer! Math sux!” She could have ended it just that easily.

Every other week for the past few months I have discovered another item missing from the March One move out debacle, where my family made their dislike of my queer life known by stealing various items from me. I don’t know who regularly inventories their shit. Not me, so I just wander around my too-big apartment and notice stuff is gone when I go to pack it, or my eyes settle upon a strange space where I finally realize a space didn’t used to be many months ago. Being doped up on new meds, more meds, migraines and all the general insanity hasn’t made me very observant. And, truthfully, I’m a pretty oblivious person to begin with. I can pass a building four times and then, the fifth time, realize it’s there. In truth, there may be more items I’m missing and I simply haven’t seen them yet.

When I make it through spring, I am a different person. I have more resilience. My bones are green and flexible, like a new tree that can weather a storm by bending with the winds. And this is how I am these days. A month ago, two months ago, these recent atrocities would have had me shedding copious tears, making calls to my therapist, wondering why I was so unfortunate to be so unloved.

But now it is nearly June, and I am simply angry.

I smashed around my apartment at the onset of the mail yesterday, throwing pillows and a Kleenex box. N was not home to witness my adult sized temper tantrum. In truth I would not have had it had she been there, lest I scare her. It made me feel alive and good to act like such a petulant child, throwing things and blustering about, becoming so at one with my mad. The cats stared at me and went out on the deck, wondering what my problem was, glancing up at me in between oat-grass bites. I composed a nasty email, and then decided that I no longer wanted anything to do with these assholes, that I would not be a bridge builder, but a bridge blaster. That I deserved control over this situation. And so I set myself upon the task of changing every piece of contact information I could, composed three more letters in my head, and became a bit, well, maniacal.

N came home to find me in perfect form, cooking dinner. Better than she expected.

Anger is a primal force. I know it well, and it sits in me, a motivator like nothing else in my life. It is the one emotion that I owe nearly everything to. I can languish forever in other emotions, do stupid things in the name of joy, sadness, hurt, pain, exhiliration, delight, envy. I am a procrastinator, a doer of nothing, when I hang out in the moods of mania and depression. But anger? Anger is all mine, and anger makes me move. It is crystalline; I see clear and pure and calm. Whatever I have been putting off, that has been needing to be done, that I know is good for me, that is right for me, that I have been making excuses about, anger will accomplish for me. In fits of anger I have made full sweeps of my life and said: Enough. My anger is a forest fire that clears away the dead wood and exposes a new space for new growth, charred though the land underneath may be.

When I have tapped into this base emotion, it is ancient, it is goddess, it is Kali, The Morrigan, The Furies, Hecate, The Dark Moon. It is dark and powerful and wild. I am swift and clean on the outside, yet feral and sinister on the inside. I feel enlightened. I feel in charge. I feel, well, good. I know that I will effect change, and that what comes next will be vastly different than what has been.

I will send a letter to my family. I will effect change. It will be different. It can’t not be now.

I wasn’t going to get all outraged about the WisCon drama that is all over the the blogosphere, because enough people have. Honestly, I live in Wisconsin, and I didn’t even know that there was a sci fi convention going on anywhere in the state.

But then I went and looked at the pictures, and read the comments, and saw that someone I personally know, with whom I have personally sat in sacred space, who has shared the story of her body with me, trashed all over the internet. 

Whoa.

Rachel Moss, let me tell you something: It sucks to get threats. It sucks to be so damn visible. It sucks to have your beliefs get you in trouble. Welcome to the real world. Karma’s a bitch, especially in the digital age. 

I spoke to this friend of mine on Facebook and let her know of stupid Rachel Moss. Stupid the nicest thing I can think to say, really. My friend already knew about it, and she has responded here.

Enough’s enough. Fat fights back. But you probably didn’t figure that.

I have a new shrink and I like her.

I decide this as I pace around my office’s small conference room, thumbnail in mouth so I can chew on it while I discuss what is wrong with my medications and mood and sleep.

It is happening, the med changes I fear.

I have discovered, accidentally, that the haphazard increase in zoloft I performed this past winter to stave off a descent into the black hole of depression has netted me a CDH, a Chronic Daily Headache. Sometimes they flare into all-out migraines. I have been trying desperately to get them under control, with excel spreadsheets to track the pain and days and it in and of itself became too overwhelming when I realized that every day I was in pain, every thing may be a trigger. Last week was so bad N convinced me to go to urgent care, where I kindly bent over and they gave me two shots of Demerol in the ass. A prescription for being stoned was better than feeling like my head was in a vice grip. The following day the pain returned full force and I thought about how: This is it. This is my life, an explosion of veins and throbs in my left temporal lobe, and I will simply have to kill myself in the near future because I cannot live in this foggy, nauseated pain every fucking day. This is no life.

But then I forgot my one-and-a-half blue pills one morning, the elliptical-shaped serotonin miracles, that prevent me from killing myself. And I realized they were giving me the pain that was making me think about killing myself. The irony. The chemical beast that drives and destroys me, serotonin, has reared its ugly head again, demanding I feed it.

For a day and a half I took the step, switched to taking my Selective Serotonin Reuptake Inhibitors at night, instead of in the morning. I lay around listless and flat affected; my mood, my personality is all chemically based. I am a drug addict. I no longer exist as a person; I am a shell, a robot. It is the pills that make me human now. I could not be without them. I laugh because of the SSRIs, but not too much because of the antipsychotics. I work because of the topomax, and don’t lash out because of the zoloft. Without modern pharmaceuticals, I would be hollow, a scarecrow, a wisp, a nothing. I long to be normal, but I never have been. My normalcy is purchased at your local Walgreen’s, and sponsored by the HMO of the day.

I call my shrink today, and she calls back. I speak staccato and rapid fire. Med changes make me anxious, and anxiety always appears as mania, in me. I speak about the headaches, the sleep, the lack thereof, how I cannot ever stop taking zoloft, I can’t quit it. I speak the language of the mentally ill. She can tell, she is concerned about my “raciness.” I know I sound insane. I feel safe to be insane with her. She won’t threaten me with a hospital, random drug changes, yanking my zoloft, the only drug I love and need so desperately that it has claimed its right to turn on me. Is that not how it is with any addict? They use their drug of choice, depend upon it so heartily that eventually it turns on them, like a feral animal that only appeared tamed?

We speak, agree to changes, agree to additional appointments, pills, taking it one day at a time. This is easy for her. She is a doctor, she has a pen, presciption pad, power. I am a patient, I need pills — modern poisons that will heal and harm me.