Jan. 2001 - "The bed bug bit me, " I told the doctor at Bellevue. "I know that DDT killed off most of the bed bugs after World War One. I thought they only existed in nineteenth century novels! On trains travelling through Siberia! Isn't that funny? I hear they are back. I saw one. And it bit me! The bed bug bit me! I've had the itchies ever since. And my back is morphing out of shape, right in front of my eyes!" I understood that I was rambling, but I was desperate for a reason, a clue. I had already seen a dermatologist who did nothing and charged me $500 for it. The doctor nodded and wrote something down. Doctors don't look at patients. They examine information.
I had a seizure the day before. That's why I was there, in Bellevue's emergency room. The doctor noted that I was on ecstacy at the time of this grand-mal seizure (the shakes, the convulsions, the whole nine). She assumed I had a bad reaction to an illegal substance. The only conclusion she could reach, based on the facts. Facts don't include things like "bed bugs," "the itchies," "morphing." Bed bugs are imaginary. Morphing is a comic book creation and she had probably never read a nineteenth-century novel. I suppose she thought I was schizophrenic as well as a drug addict. She sent me for an MRI anyway.
I had no idea what was wrong with me. Within the space of three months I went from dancing and acting five nights a weeks to uncontrollable spasms, itching, pain and no sleep. I couldn't wear loose clothing because anything that tickled the surface of my back sent me into spasms of pain. I tried to explain that I have had petit-mal seizures since I was a kid. An MRI? Been there. Done that. Something was wrong with me. My body was breaking down. "I also fainted on New Year's Eve. No drugs. No alcohol," I said. The doctor nods and writes something down.
A second seizure ocurred after a five-hour wait for a follow-up appointment with the Bellevue neurologist. Three weeks after my first seizure. I wasn't on drugs during the second seizure. I was taking a bath, actually, trying to relieve the pain and stress of being in the hospital all day. My boyfriend had to save me from drowning. I got a script for an anti-seizure drug called Tegretol.
Friday, the thirteenth of February, 2001. My doctor, my overpriced "alternative" doctor with the three feet long dreads and eight children and a thriving practice in the Slope, sent me to the hospital nearby. I had started to react to the epilepsy drug and I was suddenly (since the last visit) bruised and swollen. I had already spent thousands in his pretty office. He said, "I consider myself good at diagnosis but...." shaking his head. He said he would call his call "friend" - code for the "other black guy at med school" who at worked at Methodist Hospital and sent me over there. He said his "friend" would look out for me. "It's a good hospital," he assured me. These two men could not have been more different. Dr. Skeptical was a surgeon, believed "alternative" medicine" was nonsense and never showed up in the emergency room. Then he tortured me. Read on.
I was once again in an emergency room begging for help. "Do you drink?" the triage nurse asked me. "Uh, no, " I replied. I hadn't been drinking, in truth. "Are you an alcoholic?" was the next question. "An alcoholic!" I guffawed. When I say guffaw, I mean guffaw. I am a comedian. I was two months without sleep at this point. Everything seem hilarious and tragic all at the same time. "An alcoholic. Why not? Sure! I'm Irish. A family reunion means half the crowd takes off for an AA meeting!" I thought I was a cut-up.
Someone with a tag that read "MD" asked me why I didn't "look it up on the internet"? Not kidding.
They sent me for an X-Ray. I refused to put on the hospital gown. I told them the fabric... the itchies... the pain.... You should have seen the look on his face, this X-Ray technician. Now he had seen it all, I guess. I refused to wear the hospital gown. He had a naked, good-looking (some say "hot"), thirty year-old woman jumping around in front of him. The shrink came to see me next.
Dr. Vizner, the emergency-room psychiatrist decided I was bi-polar. She asked me to sign myself into the psychiatric ward. "Free medical care, " she coo'ed. "No way, doc. You are crazy. I tell you, I am in pain. Physical, tortuous pain. Like someone is ripping me apart, tearing at the muscles around my midsection." She couldn't get me to sign, so she left.
February 14, 2001, still in the emergency of New York Methodist Hospital. 2AM. No Dr. Skeptical. No neurologist in sight. There are never any neurologists in emergency rooms. I doubt they would useful even if they were. Neurologists don't like to touch people. They get to hit people with little hammers. Dr. Skeptical had yet to make an appearance. Crying. Screaming in pain. A nurse finally took pity on me and slipped me 5 mg of Valium. I finally slept.
Three months of fitful sleeping, with a book under my back so I could not touch the mattress and "the spot" on my back that set off the spasmatic, tortuous, itching sensation, two grand-mal seizures and three weeks of zero sleep. A kind nurse finally got it to stop with a little common sense.
While I slept, thanks to the "V," my 6'2" boyfriend curled up at my feet on the hospital bed to catch some zzz's himself. Dr. Vizner woke us a few hours later. When we were woken, he left for a moment, to use the restroom. Dr. Vizner took the opportunity to get me to sign. I was too weary to resist. I could only swim in the bliss of a few hours sleep. I signed myself into the psyche ward.
My boyfriend flipped out when he returned. They wouldn't listen to him. They thought (or assumed, like the drug thing, like the crazy thing) that he beat me and that was why I was bruised "in the groin area." (Turns it was the Tegretol, bruising and swelling both listed as reactions.) That was not considered at the time. I was more likely a crazy, beaten, drug-fiend hysteric who wouldn't accept their offer of pychiatric help.
I clearly remember my mother entering the triage ward. Oh, yes, I never left triage during the eight hours in New York Methodist Hospital Emergency Ward. I was in a bed in a huge room. It was curtained so my boyfriend could sit there and hold my hand. More likely though, I got a curtained bed because they didn't want to deal with me. I could peek out, though. I saw my mother charge into the room. "Where is she?" she demanded. My mother is a grade school teacher. She is used to being in charge. My boyfriend told her about the bait-n-switch by the shrink (a bad word for psychiatrist, I know, but I think Dr.Vizner deserves it.)
Mother got me un-signed to the pysche ward. She got me a hospital bed. She took control. I stayed in Methodist for a week. I fianlly met Dr. Skeptical. I have the paperwork. It's hilarious! "Lordosis unremarkable, possibly bi-polar, refuses psyciatric help, grossly unremarkable study of the spine, no significant neurological disorder, no known medications...." Hello! What about the Tegretol? Principal diagnosis: bruising in groin area. For three days, I screamed and furiously pressed the nurse button. Every few hours, a frustrated nurse would, with a sigh, administer another shot of Percodan or one of those drugs they give you when you got a broken leg. I was no longer cracking jokes. I was very very angry. What about the valium that had worked so well in the emergency? It's addictive, I was told. Huh? I told them I had never taken it before in my life. "But you tested positive for it," said Dr. Skeptical. They gave it to me in the emergency room! "Oh. Well, it's still addictive."
On the third day, I received a final visit from the shrink whom I told, in no uncertain terms, to fuck off. They finally gave me some valium. Three more days, with the bruising lessened (no more Tegretol) and nothing further to conclude, I was released with a script for a valium and a huge bill.
Eight months, dozens of doctors, and fifteen thousand or so (cash, paid) dollars later, I found out I had Stiff Man Syndrome. Dr. Frucht (swear that is his name) at the famed Columbia Presbyterian was so thrilled by his diagnosis. "Confirmed by the Mayo Clinic!" he said, jumping with joy. He got to diagnose a Stiff Man! My mother was angry when I burst out laughing. I got Stiff Man? Which is more "crazy?" Art or science? You decide.
I love the name of my disease. Only a comedian would get a disease called Stiff Man. Now I've always liked 'em stiff, but.... tah-dum dum.
My old psychiatrist eventually assured me I wasn't crazy. I have a physical illness.
It's an auto-immunity, like chronic fatigue, that has left my back disfigured with severe lordosis. Valium saved my life. Thank you Dr. Leo Sternbach. It controlled the pain. It controlled the symptoms. It took the three months to get a prescription because of my "drug history." Just a little reminder not to be too honest with your doctor. I told them that I had been using marijuana (a lot) to control the pain. And I was up all night and my brain was fried from pain (and pot) and lack of sleep. If I were a real drug fiend, I think, I should have taken heroin. Heroin might have helped. I can say this in retrospect. At the time, though, it didn't occur to me to try heroin or opium or some sort of muscle relaxant. Marijuana is not a great muscle relaxant, but it calmed me and helped me to eat. Pot heightens a person's awareness. I was very aware of the pain, the searing, tearing pain. I was becoming paranoid. Weed didn't help all that much. I can say this in retrospect. It calmed me on the outside, so other people could deal with me.
And the Stiff Man lives. She even walks again, albeit with her ass sticking out. She takes valium 5 times a day. She practices her own unique yoga and has created her own dance moves. She is even performing again.
I always wanted to be funny. Now, I am also funny looking. I am the woman who walks with her ass sticking out. I like to say that I have Ass Disease. I have a a bulging stomach that makes me look pregnant or my curved (like a swan, says my darling friend) back; so arched and protruding that I look like a woman with a severe case of Ass-itude. I walk with a waddle and the accompanying wiggle.
I want, someday, for my story to be published so people can see, up-close and personal, the limitations of scientific (medical) inquiry, the ineptitude of most doctors, the prejudice against women and "ethnic" people that inform medical diagnosis, and, perhaps, how far we have to travel to finally become our own special self.
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