As a homeschooled, rural, and largely feral child, I gathered special amulets as the symbology of my private world: feathers and glass bottles of colored sand, a large golden key stuffed into the pockets of my hand-me-down jeans. I made a giant map of my made-up world on a sheet of butcher paper and hung it on the door of our closet. I was homeschooled, which basically meant I did little but read all day or spend entire afternoons writing a novel about dragons on my father's ancient computer in a back room at desk made of nailed-together two-by-fours.
I wasn't as out-of-it as the adults in my life assumed; I often heard them talk about me within earshot, as if I were deaf. My memories of adult-speech are mostly eavesdropping memories. The adults talked about demons and angels and church and speaking in tongues and casting out demons. At night when I was scared and couldn't fall asleep, my mother told me it was only Satan and that Jesus was stronger than Satan and to rebuke him in Jesus' name amen. "I rebuke you, Satan in Jesus' name." It was important to say them in a certain order. Unfortunately, I was a sensitive child, and most of the time Satan was stronger.
One day after spending an hour sitting in a tree, my golden key broke in half. I was heartbroken. A spell was broken; my grandfather told me the metal was too base to be welded back together. And here I had thought it was magical. Because I believed.
I'm 26. I diagnose myself as a sensitive slut. An artist. A bad speller.
I go to the gym every day and exercise to a book on tape about human evolution. All the men in the gym do pull-ups with other men hanging off their legs, or push-ups with someone sitting on their backs. I imagine them holding me down to rape me. After that, I go to the empty women's locker room and sit in the sauna and read about peak oil. I try to think about what I would need to do in order to survive the end of oil. Every day I ride my bike through the rain, exercise until sweat rolls down my back, sit in the sauna, shower, towel off, then ride back home in the rain.
I discover a fungal infection on my torso in the changing room of a Ross Dress for Less. The red archipelagos are all over my back and in between my breasts. I go to the doctor for an official diagnosis. My doctor says you usually only get this infection when you visit the jungle, like on a tropical vacation. I imagine myself on a tropical vacation.
A couple weeks later I get stress fractures in both my ankles from running up and down my carpeted stairs, or perhaps it was walking two miles in flip flops, or maybe it was running on the treadmill at the gym. However it's happened I have an X-ray done, and the technician sobs as she positions my body on the X-ray table because her dog died today. They're broken.
I tell my doctor I have an irregular period and that I broke both my ankles on a treadmill.
He asks me how irregular.
I say I can't remember.
When was your last period?
I don't remember, I say.
I have a bone density test. It turns out I have the bones of an 80-year-old. And this is my diagnosis. The doctor tells me that we may never know why I have osteoporosis. As if my brittle bones were God's will.
My doctor makes me jump through several hoops and finally cry before he lets me see a specialist.
The endocrinologist looks like a bear that has recently learned to walk upright. In her office she checks me for a buffalo hump, a pendulous belly, and a moon face. She wants to see an old photo of my head. She checks my hands for scars. Takes my weight and measurements. Blood pressure and sugar-all the tiny animals swimming in my blood.
I am diagnosed with Cushing's disease. It means I have too much cortisol, a stress hormone, in all the tissues of my body. The cortisol causes my body to feel as if it were under attack when there is actually nothing wrong with me. Even though we are at war and I keep having sex with people who don't care about me and I'm in a ton of debt and I'm at a dead end job and the world is running out of oil and we are ruining the environment, there is actually nothing to be so stressed out about. Except that I may die if I don't have surgery to take out the tumor that is causing the disease.
My body is trying to revert itself back to its larval state. I start to add rolls and shed hair. I grow whiskers. My demineralizing skeleton begins to ache. I start taking opiates.
I go through a gamut of tests: peeing in jars, letting blood, giving stool samples, and submitting to catheter studies. MRIs, CT scans, and X-rays. Doctor's visits and paperwork.
I diagnose myself as sick, disabled, chronically ill, clinically depressed. I diagnose myself as overweight, addicted, anxious. And because the doctors are too dumb to notice, I diagnose myself as infertile and suicidal. I diagnose myself as superstitious.
I have many surgeries: surgeries that are investigatory and ones that require microscopes, surgeries where small incisions are made in my stomach and whole glands are taken out through the incisions. I imagine the surgeons cutting open my body and inserting tubes and scalpels into the tiny slits they have made. I imagine they concentrate because it makes me feel better, though I know they also probably talk about what they are going to eat for dinner or something they saw on TV.
Now I have no adrenal glands and instead of having Cushing's disease, I have Addison's disease, which is the opposite. I have swapped Satan for Jesus, or vice versa. Either way, JFK had Addison's so I guess it can't be all-bad.
I diagnose myself as alive, lucky, stable. Disabled. Content.
Now I have a ritual that is part routine and part magic. On Sunday evenings I take out my pill bottles and arrange them in a row, like little orange marigolds on the bathroom counter.
Into the AM pill tray they go one by one: the steroids, the antidepressants, and the thyroid meds to get me going in the morning. Also milk thistle because someone told me it helped my liver and vitamin B because my grandmother claims it helps her. Also fish oil and calcium and vitamin D to buttress my demineralizing skeleton.
Then in the PM slots go the birth control for the estrogen alone. The bubble pack hurts my fingers as I push each pill out. Then, slow-release hydrocortisone and the tiny fludrocortisone. Vitamins again. More antidepressants. Lovostatin.
Two or three swallows of water. Sometimes the big pills make me gag.
There's the shot of human growth hormone that I keep in the fridge. I often ask my mother to do it because trying to give myself a shot in the butt makes my back muscles spasm.
This used to inspire wonder in me-that these little pills keep me alive. Every time I woke up from surgery still breathing it was a miracle. But now I mostly take it for granted, and sometimes I think about that too and it makes me sad. But, unlike some rituals, the pills always work.
I want and need to get federal disability status. My lawyer tells me that I have some things working against me.
You're young, he says. Well, under 65. That's how the government defines "young." And you're educated.
I'm overeducated! I say.
According to the government, anyone with more than a high school education is educated.
Oh, I say.
I self-diagnosis my fibromyalgia, a chronic pain condition. There is no cure or very effective treatment so it doesn't matter. But since another diagnosis will only help my case, I complain to my new endocrinologist again about my pain.
Where is it? he asks.
Mostly in some pressure points. I point them out.
It sounds like fibromyalgia.
I nod. Yeah, my mom has fibromyalgia, and she says that's what it sounds like to her, too.
He sets me up with an appointment with a rheumatologist.
You have the skeleton of a much older person, says the rheumatologist.
Who? I ask.
We may never know, she says.
Now let's test your brain, the doctor says.
I am in a hospital gown and my underwear. Bare feet.
Walk to the door and back again on your tip-toes, now on your heels, now one foot in front of the other.
Now I'm going to ask you some strange questions, she says. Have you ever had one finger or toe swell up independently of all the others? Have you ever had one eye get really red and sore and then have it clear up? How many cigarettes do you smoke a day? How many drinks do you have a day? Are you in any danger of becoming pregnant?
The doctor presses on my sternum, my shoulders, my back, all the way down my spine.
Close your eyes, she says. What does this smell like?
Old Spice. Gravy?
She begins to tap my knees with a little hammer with a black stone attached to the top. She tells me to close my eyes again.
It feels like a feather.
Eagle or Turkey?
Now it says here on the questionnaire that you have pain on the outside of your hands?
Well, not really. More like on my palms.
How often do you check your bank account balance?
Only when I make a deposit.
And how often is that?
I don't know, every other week?
When was your last exorcism?
Eleven years ago.
And were there any complications?
What do you mean? Um, there was some Atheism ...
And your pituitary surgeries? Did they cut through your skull?
They went through my nose. They were unsuccessful. HGH deficiency. Estrogen deficiency. Thyroid disease.
It says here on the questionnaire that, on a daily or weekly basis, you can accomplish most of your goals.
Well ... I was lying. I was adjusting for my Meyer's Briggs Personality type: INFP. I'm an idealist-kind of a perfectionist.
Ahh. I see. So how many times a week can you actually accomplish your goals?
I can never accomplish my goals.
Let me see your palms. It says here that you were very imaginative as a child. Your wrists and fingers bend farther back than is normal. Have you always been flexible?
This is common in my patients. It's called hyper-mobility. How much time did you spend as a child, on your back with your legs behind your head, your knees resting on the ground?
Hours and hours.
How much time did you spend, spinning around, looking at the floor and then quickly looking up, making you fall quickly to the ground?
Oh, I did that about once a week.
For about how long?
I don't know ... an hour?
On a scale from one to ten how fascinated are you about religion?
Probably like a four or five. Religion is the biggest destroyer of my dreams. No! The Church would yell at me, you have to be crazy in MY way.
Uh huh. I see. And what about sleep patterns? Are you good at reading the intentions of men? Have you ever been in a life-threatening situation?
Only my Cushing's disease.
Aha. Yes, I can see how you might think that was a life-threatening situation.
I almost drowned when I was a kid.
Are your feelings easily hurt? Do you snore? Do you have problems making decisions? How well do you parallel park?
When I parallel park I get a visual aura that sometimes makes me lose all peripheral vision.
What does the visual aura look like?
Tiny, sparkling sperm.
Do you take ibuprofen for your pain?
It doesn't help.
So what do you use for pain relief ?
Well, opiates are addictive. To be frank, I smoke pot usually.
Does the pot work?
Well, kind of. I mean, the pain is still there but it's like it distracts me from the pain. I stop focusing on it.
Yes, the doctor says, many fibromyalgia patients believe that marijuana helps them feel better. Now bend over and touch your toes.
I bend down and stare at the tiled floor. I've always been able to easily touch my toes.
And this suddenly seems like my only skill. I think about Amens and Hallelujahs, about how Religion gives me the language and the pictures, but not the permission. About Science and the Magical, Ancient Earth. It occurs to me that in geological and biological time all dreams and nightmares are a possibility-all bodies are possible. Even mine.
Your lower right back bulges out, the doctor says. Normal spines are shaped liked coils. Yours is shaped like an accordion, and not in a good way. OK, stand back up.
The doctor takes an envelope out of her pocket. She sticks her hand inside and takes something out of it, like a chef takes a pinch of salt between her fingers. She throws it up in the air, and it looks like gold dust, or fairy dust, or tiny sparkling motes of genetic material. She and I watch it as it flutters very, very slowly to the ground.
I expect her to comment on the giant shape the motes have made on the exam room floor. It's an indecipherable shape, like some rune in an ancient language. Perhaps it's just ritual after all, I think.
So, she says after a long sigh, I do believe you have fibromyalgia. You have most of the symptoms. Pain seems to be the biggest issue for you. Your nervous system is overloaded, and you've been through a lot of trauma. Your skeleton has been de-mineralizing for the past ten years.
I thought I had the skeleton of a much older person.
Yes, it is the skeleton of a much older person, but for practicality's sake, we'll just assume it's yours.
She prints out some information for me. A website and some books to read.