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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

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.

 

 

For the love.

So, I’ve started the packing process at my apartment, because I like to be slow and deliberate about it, and pack like three boxes a day and go through my things and talk to myself about what I need and what I don’t and really eliminate lots of stuff. Besides clothing, and shoes and potentially jewelry, I like to not have very much stuff at all, actuallly. There’s something peaceful to me about having just enough stuff to fill a small one bedroom, even though I currently haphazardly occupy a three bedroom, a misfortune that occurred when I thought it would work out to live with my sister.

The great purging process began last year when I was sorting through my shit in the divorce. I just left a bunch of crap there — a 1500 square foot condo allows you to accumulate 1500 square feet worth of crap — and I kind of reveled in taking tons of books to resale shops and tossing out clothes I hadn’t touched in a few years thanks to psych med weight gain and a style overhaul. I like imagining that paring down my possessions would lead to a new life, cleaner and more carefree.

In a certain way, I have a lot less, but I still feel like it’s too much. The burden comes in books, because they are cumbersome to move, but some I can’t part with because the remembrances of their stories make me smile. Other things have a family memory tied to it, and now that I have so little of that left, I am trying to hold on to what I have so that there is just something, I guess. Something that proves I mattered to someone, or belonged to someone, had some roots, maybe.

I don’t really notice things, I guess; I’m not too possessive about stuff, which is why, two months after moving back in, I am still noticing things that are missing from when my family raged on in here, moved my sister out and stole things from me. Just now I was putting away some cords into my cord box — because I tend to collect random AC adaptors and RCA cords and such and need a special box to hold all of these things lest I need them later. And I noticed the most ridiculous thing of all had been stolen: This goddamned animatronic monkey head that my dad had bought me for Christmas like three years ago in a fit of manic glee — his, not mine.

He got it at the Sharper Image. It is motion sensitive and Hollywood grade and utterly ridiculous, and at 27, I had really no purpose for it. But he gets in these moods, and we get gifts like this. This is what Christmas has always been for us: gifts that are totally random, or totally passive agressive.

As a fat little child, and then as a fat teenager, my mother would buy — purposefully, I think — clothing that was too small for me and not at all stylish. One year, when I had begun getting fatter, I got a pair of white cotton cable knit tights. My mom had been at work and we had opened Christmas presents without her. I tried on the tights, and saw that they didn’t fit. I was ashamed and disappointed and angry at my body. Of course there was nothing wrong with the tights. It was my body. When my mom got home, she insisted that they fit and we stuffed me into those tights. It lasted a few short minutes until they started rolling down and eventually split in the crotch and thighs. Humilated, I secretly threw them away.

This followed for years, and usually it involved pants that were too small, pants with pleats, pants that were tapered, pants that were garish.

Just yesterday, jonesing for extra cash, broke as a joke with the cost of this too-big apartment, I took all this ridiculous gold-and-diamond jewelry my mother has given me over the last number of Christmases and tried to pawn it. I don’t wear gold. I don’t wear diamonds. I wore diamonds once: in my wedding ring and band, and they were reclaimed from my ex’s ex-fiance, and I didn’t really give a shit about them. And the gold was white, because really I prefer silver, and silver set with large semi-precious, non-faceted stones. Really earthy, big, bohemian, stuff. I have always worn jewelry like this. I’ve made it off an on like this since I was a kid. It’s pretty obvious what I prefer to wear if you look at me, for like, 2 seconds. It ain’t gold and sparkly.

So I took it all to sell, and it turns out it ain’t worth a fucking thing. Ten cents on the dollar, and they’d have to melt it all down. God, even in the aftermath, I’m still getting screwed.

So this is where I’m at: stuck with Christmas gifts I don’t want and can’t sell, still finding shit that has been stolen around my house because I’m too daft to pay attention. I mean, just last week I noticed rubbermaid containers that I used to move books in had been stolen.

Usually people start off the process of “hurt” with anger. You know, you get angry first because really it’s masking hurt, and you have to work through the anger to get to the more vulnerable hurt feelings. I’m the reverse now. I was already devastated and broken. Now I’m just pissed and annoyed. Like, can we get on with it already, people? Can I possibly request a list of other shit that may have been taken so I don’t have to discover yet another item that’s missing in a week? Like it’s a reverse scavenger hunt in my own home? It’s really rather tiresome. Will you be sending me a bill at the end of all of this for the two Regular Absorbancy tampons I borrowed and the time you bought an extra roll of paper towels and the 99 cent toilet brush you bought me? Should I be tracking this in Excel with macros and such? For the love, I just don’t have the energy to be so spiteful, but boy, you guys are really pushing me to the limit.

Updates

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.

Dieting is Disordered Eating? Ya think?

So I was reading the news, and after looking at 21 pictures of celebrities aging with and without the benefits of plastic surgery, I stumbled upon this.

Oh, good!

Now we all have eating disorders.

I have mixed feelings about this article. I am glad that Self  has the balls, quite frankly, to address this issue, because I can’t even pick up a copy of Self  without feeling like shit. Every issue has some tanned, toned uberwoman on the cover who will show me how to get the perfect abs and eat the perfect salad if only I turn to page 121. The sight of the magazine itself is triggering and every time I see it I want to upturn the sales rack in rage that I am expected to spend my life in search of the Mecca that is taut glutes.

What bothers me about the article, however, is the dismissal of certain behaviors into categories other than traditional eating disorders. Some of the behaviors on display, such as “secret eating,” or “purgers” are actually criteria of bulimia. They are medically serious, and shouldn’t be dismissed as “dieting gone too far.” While I recognize that Self  cannot diagnose anyone with an actual eating disorder, I do have a serious issue with the notion that they take real symptoms of eating disorders and minimize them, treating them as though if a woman was to stop the diet, she could stop the behavior. This is not the case: Once a behavior has stepped over the line into the realm of ED, simply ending Atkins, Weight Watchers, or the cabbage soup diet isn’t going to be the panacea a person needs. There will be no riding off into the sunset, eating healthily and normally, body image intact, smiling face turned toward a bright new day full of nutritious, binge-and-purge-free, starvation-free days. No.

I am appreciative that the Selfsurvey and this article recognizes that dieting is triggering for many people, that dieting is, in and of itself, a pathological form of behavior. Dieting gives us something to aspire to when everything else is out of control. Calories in, calories out, the motto goes. It is a soothing form of control when everything else is awry. Tame it, harness it, corral it. After all, when we cannot control the world around us, we turn to the body. That is a very basic principle of feminism, and the Selfsurvey and this MSN article seems to grasp that.

The quotes of the women in the article point to how desperate they are: They see the diet as the answer, the control of food as the salve to their problems in life. If only they can maintain the proper proportion of body weight, they will conquer the world. They may recognize this is a problem, but they do not care. And this is the hallmark of an eating disorder. When insanity about the behavior is recognized and discarded as unimportant. Only the behavior rules, the ritual matters, the numbers count. One woman says: I would be very upset if I gained 5 pounds. She weighs 103 pounds, and has given birth. She barely exists, a wisp in the world. Her literal footprint is tiny, and she works daily to keep it that way.

The second page of the article gives tips on what is problematic behavior when dieting. In reading the list, it’s hard not to see how any diet isn’t disordered eating. How repeated dieting can lead the vulnerable into an eating disorder. A simple “preoccupation with calories” is considered disordered eating. Is that not what Weight Watchers and Jenny Craig teach? Eliminating entire food groups is also considered disordered eating. That makes Atkins die-hards disordered eaters. Anyone who has ever dieted or is currently dieting, is, essentially, practicing disordered eating. And disordered eating in those who are susceptible can lead to full-blown, dangerous eating disorders.

I wonder what will happen as a result of this Self survey. There seems to exist a duality in the media: the fascination with dieting gone wrong, dieting that turns into a disorder, and the attainment of the perfect body, which cannot be attained except through, as the Selfsurvey illustrates, disordered eating. This is a dangerous Catch-22, played out on the bodies of people everywhere: Diet enough to look good, but not enough to look like a freakshow. The only ones who win are those who make money off of our bodies: The diet companies at the beginning, and the shrinks at the end.

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