An ode to brain surgery

The topic of brain surgery will create a pause in conversation like no other. Espeically when it is your brain surgery that is up for diuscussion.

I am rather sick of discussing it. Sicker of discussing it than I am sick with the cause for the brain surgery.

I don’t want to have to explain anymore terms like Chiari Malformation or Syrinx or cerebral spinal fluid or dura or posterior fossa decompression. I don’t want to make jokes anymore about how my brain is too big for my skull and we always knew you were smart, haha, so that just make all this much better. No, not really. Maybe for you it does, but I’m the one who will have a saw taken to her skull in a mere four weeks, maybe you should ask me how I feel about it instead of turning this conversation into a case of Medical Mystery.

People are not good at talking about feelings. I know this. This is why they pay therapists. To learn to talk about feelings. To have feelings. To cathart, to release, to grieve, to unrepress. I am studying the art and science of becoming a therapist, and will someday apply various theoretical practices to help people feel.

I don’t understand what is so hard about feeling. I understand about displaying too much emotion. About putting emotion in the wrong place, with the wrong person. I understand about having to hold back emotion. Like swallowing the desire to punch someone in the head because you are irritated that you have to explain, for the 50th time, that your brain is too big for your skull, and you have to laugh at that joke because clearly, it’s the first time you heard it, ha fucking ha. I understand about having to repress the emotion that comes when people pretend to care about your brain surgery, your pain that leaves you unable to do the things you could do last year at this same time. That emotion is anger. You can tell they pretend to care because they look for ways to get out of the conversation as quickly as possible. You let them, because it’s really easier for you both. Then you cry later because you’re just tired of always being the different one.

I have actually, in my old age, become repressed, and am fully aware of it, because I am playing the social role of good girl. I used to do that a lot less.

A funny thing happens when you get diagnosed with something big like a progressive illness that may leave you paralyzed, and will leave you with chronic pain for the rest of your life, and may require multiple brain surgeries. You begin to think about just saying whatever the fuck comes to your mouth. Layers of socialization start peeling away like an onion. You see them fall off and lie next to you, yellowing and thin as tracing paper. There goes my abilty to care about what professors think about me, you think. There goes my ability to give a fuck about what random people think. There goes my ability to sit through painful conversations. I’ll just get up and walk out. It’s a sort of molting.

My surgery takes place October 28. This is three days before Samhain and 10 days before my birthday. It is the new year for me in many ways. It is an oppoprtunity to be something different, be someone new. I’m not doing it on purpose. I am not trying to unveil A New Me! With More Room For My Brain! I find it is just happening. I find I have less tolerance for things I have been socialized for, have been beaten down for in the last few years. When you find out your skull will be pried open, you find not much else matters, and you just get down to business real quick. It is a death of sorts for me, these last four weeks. Parts of me are dying. There is much to be buried. This malformation — I was born with it. This is an opportunity to re-do, symbolically, life, birth to 30.

This past year, I have been disowned, disenfranchised. I have been without a home for part of the year. All because I turned queer. I have been sick. I had to find a new job. I got divorced. My life has not been easy. I’m ready to do something different now. I’m ready to stop struggling so much. I don’t identify with struggling, but it seems to identify with me. I dream that this is the pinnacle of the struggle, and I have four more weeks. I am acquiring a new attitude, I can already tell. And I am hoping, once they cut into my brain, that they will excise all the crap that I have accumulated in 30 years, so I can do something different in my life once.

Let up on Palin

My political slip is going to show in this post.

I stopped regularly following the election when we all realized Clinton wasn’t going to get the nomination. Obama is fine, I just don’t think he is experienced enough. That’s all.

However, I am kind of a media junkie. From my work comptuer, I log in to a news site about every 10 minutes to check the weather, check facebook, check the news, check my email, and check more news. The internet is my primary source of news these days, along with the snippets of NPR we leave on for the dog blaring from an old clock radio in the bathroom. He will be the most informed yellow lab this side of the Mississippi.

And here is what I am seeing:

Palin! Palin! Palin!

Oy.

I have yet to see any smear campaigns about Biden. I barely know who Biden is. Except that he’s white and male.

And that’s probably the point.

Here’s what I know about Palin, and I haven’t even read a FULL NEWS STORY about her:

-She is a member of the NRA
-Her unwed teen dauther is preggers, but don’t worry, she’s marrying the dad;
-Another child has Down’s Syndrome;
-She has a grizzly bear pelt covering the couch in her office;
-She hunts and fishes;
-She claims not to know what a Vice President does;
-There are concerns that McCain doesn’t even really know her;
-The evangelical Christian conservatives are really excited about her
-She flip-flopped on the famed “Bridge to Nowhere.”

I am awaiting the headlines regarding her hair, her choice of clothing, make-up, shoe heel height, choice of eye glasses, and pictures revealing her status as a cheerleader in high school, or that she was involved in some unfortunately-named-pageant wearing a bathing suit and heels.

I know nothing of Biden. Except that he’s old and white.

Everyone’s up in arms about Palin. Oh, she sucks. Oh, she’s horrible. Oh, she’s dumb.

You know, I am in no way a conservative. I don’t own a gun. There’s no way I would have five children, let my 17-year-old get married, be excited that evangelical Christians were excited about me, or have a grizzly bear pelt within a 5 mile radius of my office. Palin and I? Far more different than alike.

But all the crap she is getting?

It’s pure sexism. If she were a man, no one would give a fuck if she hunted, fished, had an unwed pregnant teen daughter, had a kid with a developmental disability, or belonged to the NRA.

That she does all of those things and is now up for the Vice Presidency challenges our assumptions of what a woman is supposed to be doing.

She reminds me of Clinton in a certain way.

Clinton did her own thing too. She had her own career. She didn’t give up her life to Bill. She had shit to do, and she did it. And while I prefer Clinton to Palin a million times over, both were, are, will continue to be victims of the institution of sexism.

Because any man — any white man — that is up for vice presidency — will not have to face questions about why he decorates his office the way he does, about why he is a member of the NRA, about why he wears pants suits, about why he didn’t give up his career when his husband ran for office, about why he let his children get so out of hand. He is given the privilege to do whatever the fuck he wants, whenever he wants, and no one ever questions it.

That is why I am a feminist. Because people like Palin and Clinton should be able to run for office without the world having to devolve into a discussion of hair and pantsuits.

The Seven Stages

The Seven Stages of Grief are:

Shock/Disbelief
Denial
Bargaining
Guilt
Anger
Depression
Acceptance and Hope.

Today, I am in the Depression phase.

People who are in the throws of the Seven Stages of Grief will experience all of these emotions, they say, but not necessarily in order, and some only perhaps for a fleeting second.

This is true.

After receiving my initial diagnosis of Chiari Malformation, I was heartily in a mixture of shock, disbelief and denial for several days. I bargained with myself about elements in my life: If I need brain surgery, I’ll put it off for two years until I finish graduate school. That’s what I will do.

Then I got diagnosed with the associated conditioned of syringomyelia. More serious, involving the spinal cord, and progessive, it makes it far more likely I will need brain surgery. If not now, then in the near future. It’s a For Sure. And that I’ll have this pain and exhaustion forever, even after surgery. On top of grieving the loss of my plans for the next few years, I began grieving the map of my actual life. Guilt set in. It’s not fair to N. I won’t be able to clean the house. I can’t take care of our new puppy like I should. I am not supposed to even lift a goddamned laundry basket. I can’t do the things I am supposed to do. I feel like I am letting N down if I quit school, which is what I want to do because I want to enjoy my weekends when I have good ones instead of writing papers and sitting in uncomfortable chairs discussing how therapists fuck up, which I already know a lot about, seeing as I’ve been to plenty who have.

And I get angry. Angry at friends who can’t offer words of support because they don’t know how to deal with the answer I give them when they ask how the last MRI went. Don’t ask, don’t tell, I want to shout. How is it, I wonder, in this society that stigmatizes mental illness so, that all of you can accept my bipolar disorder easily, yet you are fleeing and speechless when I tell you about the growing hole in my spinal cord? Are you worried that I will ask you to wipe my ass should I lose functioning of my hands? Or that you will catch it?

Fresh off of two great days of limited pain, I had convinced myself that I was in prime shape. I would not need surgery. There was nothing wrong with me! Denial, denial, denial. I began to get nauseus. A blinding, painful headache set in, along with confusion and clumsiness. All I could do was go to bed at 7:30 last night, and so I did. When it was time to get up for work this morning, I looked around my house at the complete disaster it was, and wanted to crawl back under the covers and forget that this was my life, and would be for the rest of it.

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.

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