An ode to brain surgery

October 2, 2008 at 8:29 am (Uncategorized)

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.

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The Seven Stages

August 19, 2008 at 9:42 am (Uncategorized)

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.

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The Latest

July 22, 2008 at 7:57 pm (Uncategorized)
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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.

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The personal touch of Rachel Moss

May 29, 2008 at 10:41 am (acceptance, activism, fat, feminism)
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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.

 

 

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Updates

May 14, 2008 at 2:12 pm (Uncategorized)
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I haven’t had much positive to say lately, because I’ve witnessed some not nice things happen in this community recently, and I’m not sure why, but it’s tiresome and actually rather boring. And so, I’ve been keeping my nose down, mouth shut, and occupying myself with things at home, like dying shit with RIT because I’m tired of brown sheets and white sweaters. I’ve also learned that Coppertone Gradual Tan Self-Tanner aerosol spray smells a lot like weed and requires a ton of incense to make your bathroom smell relatively decent again.

I’m still fat. I’m suffering a horrible bout of migraines — nearly a week now –, with hot spiders of red fire crawling up my left temporal lobe every day. I’ve still got an ulcer. My family still hates me. We’ve found a place to live. We are still getting a puppy. The leaves have bloomed and my moods have settled. I take Ambien now, and I fall asleep in record time, despite any midnight anxieties that may try to plague me, begging me to assauge them with Forensic File marathons and Peanut Butter and Jelly sandwiches.

I have read a lot this spring, finishing the very triggering Madness: A Bipolar Life, by Marya Hornbacher. I use the word triggering in it’s actual sense, meaning that it Triggered me into Actual HypoManic Episodes, and I spent a lot, and couldn’t sleep, and spoke quickly and had grand ideas about writing books and stories, and then crashed into cranky, ornery moods. I don’t use Triggering in the invented sense, that people toss around easily and callously. Her books is a much better picture into the mind of the manic than is Unquiet Mind, the famous, yet more academic, tome of bipolar disorder. I don’t suffer the same as Hornbacher, but her writing is staccato and sharp and speaks the language of madness just right. I’ve read some Augusten Burroughs this spring as well, and his childlike style of writing is fun and gregarious. It’s been a good escape into others’ insanity, this reading.

I’m anxiously awaiting the thunderstorms to come, and release some of the pressure in my brain, the eventual clash of spring and summer meeting. Every night I will one to come, a big one, so I can lay huddled in the bed with N and the cats and pull the sheets tight up to my eyes and shriek when the lightning flashes, knowing a loud crack of thunder will peal shortly after. The best thunderstorms happen in the afternoons, a momentary daylight midnight, when you can smell the change in energy. I like to stand in the wind and let my hair whip around me and watch the leaves change colors, the whites exposed like fish bellies on trees.

But for now I content myself with sticking my hands deep in the soil of repotted tomato plants and running my hand over lavender and peppermint herbs, and telling them both they’ll live a long and happy life, just like me.

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