1st step: Transverse Myelitis
- piss your skin tight pants under the sun and in public
- wake up without legs
- get diagnosis
- begin life in and in and out and in of hospital
- rid life of negativity - people, thoughts, things not worthy of the healing cause
- get attorney to fight Aetna for right to treatment
- Aetna takes monthly payments and my most important 3 months of recovery
- lose cognition
- lose hearing in 1 ear
- don't take thinker pose, it hurts the jaw bones
- lose vision
- Top Doc says, "you're crazy, you can see."
- use walking cane as seeing eyestick to find way home
- lose identity
- lose self-confidence, or just lose, lose at games that you were the queen of winning, lose shallow lovers or hallowed loves - in sickness not health, there is little distinction
- delirium and hallucinations set in
- birds enter my apartment, "let's go for a walk"
- I come to, just before following them out my window
- MRI says, "lesions on brain ventricles"
- Doctor says, "daily injections; gain weight...tomorrow celebrate your birthday...i'll see you thursday"
- Doctor says, "keep your chin up"
- there are people with death sentences
- I say, at least it's not a death sentence
- two weeks later, in hospital, with sepsis
- i am dying. i am living. i am dying, then living.
- they ask, What year is it? I mumble, 1985. I'm 10, nothing has yet happened.
- I sleep and sleep, I can not get from my bed to my portapotty.
- I sleep and sleep and am accused of hoarding pain meds.
- two months later, I sleep in my own bed, back where I started
- It's been 15 months, at least 10 surgeries; it's time to empty the 'roids from my de-muscled body
- I return to my bed, swallow my nighttime pain/spasm/tremor/sleepless nights cocktail...hours and hours, still awake; too awake, too alive, ingredients for pain ascending
I'm one of the few or many with the lucky triad of neuro sentences, and I've been fed hope and lies and truths, and I've chewed it like a cow and its cud and spat it out smiling, and with each transfusion of "things will get better" jargon, I get more and more meds....and more diagnoses...and more treatment plans...and weaker in body...and weaker in something people cal spirit...and weaker in mind, brain cells are dumb cells, but now I can watch a movie on TV - beginning to end; popping 2 oxycodone midway - this is progress. This is progress?
This is not pity. This is my brain on neuro disorders and neuro drugs. Where is Melanie? She's not here this year. She's on a neuroflight, no vaccinations necessary or allowed - away from disappointment, anger a lot of anger, away from love that never was anything more than more negativity more spinal column aggravation. This life is aggravating. People are aggravating. Health people, stay away from me this New Year. I most likely hate you. Don't interrupt my journey with your champagne happiness. Perhaps we can meet again in 2011. But no, that's hope, and hope is disappointment. Swallow it all like midnight's toast, "to nothing, to nothing, hurrah, hurrah."
Friends say, you deserve to be sad, you deserve to be angry, and being sad and angry makes me more sad and angry. I used to think, at least this neuro shit won't kill me. But we now know that's not true. I'm dressed with a permanent permacath, that shakes its udders at infection, like a blond with a boob job worth flaunting. And then there's the portacath too, hovering in the shadow of its neighboring death trap.
I follow instructions, mind the rules, not showered in 3 months, keeping my central line clean, keeping my life line from death line, sleeping on ER benches and beds, digging through the bureaucracy and hypocrisy of insurance and health care. There is not enough Zoloft to overpower the neuro triangle.
I am a hospital bracelet - white, red, or yellow; such happy colors.
And here I am again, solo, baring my soul, a sap for a soul, a misplaced soul, solo, always solo along sidewalks of healthy happiness, such lucky happiness, such insensitive happiness, such insulting happiness.
Perhaps there will be links and pictures later.