Friday, July 16, 2010

"Hope makes torture possible."

"You rely too much on yourself," my father said, in rare moment of emotional frankness. I admit to being very disappointed at the showing 'myself' has made these past six months.

Despite pushing for a diagnosis and throwing myself headlong into the recommended treatment I've just been going downhill. More pain, more subluxations, more fatigue and most recently, the return of my seizures.

'Myself' gets an F for failing to secure a job in a timely fashion. I called my mother crying, saying I felt like a failure, I hated this, bloo-blah, bloo-blah, as my younger sister would say.

I got really sick during the heat wave. I started getting nauseated after every meal. Then I was nauseated constantly...I couldn't eat anything. I was so exhausted I had to force myself to do everything, and the exhaustion was compounded by the fact that I wasn't eating anything!

Along with not eating enough came dehydration and finally the return of my least favorite symptom: the seizures. No one knows why I get them, although every doctor has a pet theory. Thankfully, most of my doctors agree they aren't psychosomatic. But we know they aren't epileptic. Unfortunately, they are indistiguishable from a grand mal seizure.

The night I asked my sister to take me to ER I sat slumped in the waiting seizing and passing out, over and over and over again. My sister was in tears. Even other people in the waiting room went up to the desk and said, "Um...that girl just had another seizure."

Because typically, people attend to people having seizures. At first two nurses came running out. My sister told them the only thing she knew; they weren't epileptic. "If they aren't epileptic, what are they?" one nurse asked. "I don't know," my sister said helplessly.

That was the end of their interest. A half-hour later I got a room. Both my shoulders were subluxed, but I was in no shape to fix them. I was completely out of it.

All I know is the next morning, a doctor informed me that since I wasn't dehydrated, I didn't need to be in the hospital. And since I didn't need to be in the hospital, I had no choice but to walk home in my pajamas. I was sweaty, I was stinky, my hair was mussed and it was hot. My sister had left for Virginia that morning.

I walked straight home and spent the next two days dealing with my nausea and seizures the best way I knew how.

By pulling my trash can close to the side of my bed and crying hysterically.

Things are going to be different now. Really. No amount of wishing is going to change anything. It's not something I can avert just by trying harder.

It's not like piano practice or studying Japanese or squeaking through in trigonometry in high school and macroeconomics in undergrad.

"Shit happens," is what my father usually says. "Shit is what happens to other people," I usually say back.

When the anti-nausea medicine wasn't covered by my insurance, I bought a two liter bottle of ginger ale, just like my mother would get for me when I picked up some bug in elementary school.

I need to make a decision about staying in Philadelphia or not staying.
I need to make it quickly. Quickly, quickly. I really can't think of a job I can do right now.

(Who's running this show?)

At my last appointment, my physiatrist explained that the muscles in my hand are weak because the wrists aren't stable. "Good," I said. 'Good,' as in, 'it's not a nerve damage issue.'

I drop a bottle of soy sauce. Glass goes everywhere. I drop a bottle of vinegar. Glass goes everywhere.

(How do I stop this terrifying slide?)

I take half of a pill and curl up with my heating pad in front of the TV.

Hating 'myself.'


8Bit-Emma said...

I'm so sorry everything compounded like that.

I can't stop thinking about the title of this post. I've never thought about it like that, but now I feel like that phrase so accurately describes having a chronic disease...

Yvette said...

Emma, thank you. The title comes from a poem by Graham Foust. It struck me when I read it, and it's been haunting me ever since.

creative chaos said...

You have quite a gift with capturing the pain and agony... a little ironic... Bless you and your hope. The voice you give to our struggles is profoundly appreciated.