My healthcare story.
Oigh. It's hard to pump it through from paper to public this quickly... usually things like this stew for a year or two in my kill-file. But I've had some practice telling this one:
It was a cold and windy day, colored Northern California gray. I was a student back then, sitting in the Union cafeteria, working on the daily crossword puzzle. A door opened, a cold draft blew in, and I shivered. Thus began my multi-month odyssey through the medical system.
I’ve shivered from cold thousands of times before. Nothing remarkable had ever come of it. But this time, the shuddering didn’t stop. The muscles in my upper body would clench, vibrate and release… over and over again… like a full-body pulse.
I was pretty concerned by this, so I focused all my willpower on bringing the shudder under control. Within a few minutes, my shoulders relaxed. I went to my afternoon class with my hands shaking like a Parkinson’s patient. Later that evening, my right arm gradually quieted down.
“At least it’s passing. By morning, I’ll be fine.”
It was hard to sleep with my arm convulsing every few seconds. I’d lie down, try my hardest to relax, and pray that my left arm would fall to sleep. After several fruitless hours, I abandoned all hope of sleep. I had a productive night, reading through dawn.
The next day, I attended a friend’s dissertation defense. I mentioned my problem, and showed off my arm’s strange performance act. Back then, I was accustomed to all-nighters. This couldn’t be something two days of exhaustion wouldn’t cure. But it was hard to sleep with my arm so hyperactive.
By dawn, I was entering my third consecutive day without sleep. I remember hearing as a boy that a man loses his mind after four days without sleep. An elderly Korean War vet had told me that, and I assumed he had grounds to know. I went to the student health clinic. I was told that the soonest possible appointment would be two days hence.
At the office that afternoon, my boss, an Assistant Dean, noticed that I was haggard and shaking. I explained the situation. She hit the roof and arranged an appointment at the clinic for first thing the next morning.
When I arrived for that visit, I was entering the dreaded fourth day without sleep. All this time, the muscles in my left arm had contracted and released with the distracting regularity of a metronome. The clinician told me I had allergies, and offered some antihistamines.
My boss was livid. I was walking through a dream. Calls were placed to the local hospital—a teaching institution—and I was given a priority neurology appointment for the next day.
The next morning, I was sharing breakfast with a disabled Olympian. She wanted to know what five days without sleep felt like.
“An ocean storm inside an eggshell.” I was spending a lot of energy staying calm—speaking slowly, deliberately, without affect. Emotionally, I was torn up inside—ranging from tears to laughter to anguish within the space of seconds. And all that time, that damn arm just kept pulsing, pulsing, pulsing. I wanted to cut the damn thing off and be done with it.
That afternoon, at my appointment, I was seen by a student intern. She looked at my arm. Took my blood pressure. Looked at my arm. Hit my knee with a hammer. Looked at my arm. Then she left the room.
When she returned, there was another intern. “Look at this.” He looked at my arm. Pulled up my eyelids. Looked at my arm. Pressed my neck. Looked at my arm. They both left.
When they returned, they were accompanied by another man, introduced as the “Chief Resident.” He performed all the same gestures and spent a longer time gazing ponderously at my arm, fist pressed to chin. All three left.
When they returned, they had an older man with them—apparently a full-fledged doctor. Poke and look, poke and look, questions all around. By now, my symptom report had been learned by rote. And out he went, gaggle of residents in tow.
Next came a second doctor, no more successful than the first. When he returned, he brought the whole mob—two doctors and three residents, along with a blonde woman identified as the Chief Neurologist.
“At last, I’ve reached the head of their tribe.”
I was examined anew. I had to repeat my answers to previous questions. I undressed. Was pushed and pressed and poked. The Chief Neurologist fled, leaving her posse behind.
When she returned, she had a bald man with her—a “visiting expert” with a heavy German accent. Looking, looking, looking, then the whole troop stampeded out the door.
I didn’t like what I heard next. Whispery shouts. “It must be a tumor.” “I haven’t seen anything like it.” “So what should we do?” They were conferring just outside the door!
The herd burst back in. Their leader, the Chief Neurologist, asked whether I’d be willing to spend the night?
The rest of the day was an out-of-body experience. I moved through the department like animated meat. Things were taped to my head. Strobes were flashed in my eyes. I was laid onto a gurney. A needle went into my veins. I finally slept.
When I awoke, days had passed. I was fiending for a cigarette. A doctor arrived.
He gave me a long list of conditions I conclusively didn’t have. My arm was still spasming.
“So what is it?”
“We don’t know.”
“So what now?”
“Well, the good news is we know all the things that could probably kill you. And it isn’t any of them.”
“So what is it?”
“We don’t know.”
“So what now?”
“Come back for observation in two weeks.”
“How will I sleep?”
“Take this prescription to the pharmacy. Take a dose of Atavan, a muscle relaxant, every four hours. You’ll sleep.”
The next six weeks were a groggy time. My arm kept twitching, but I often slept.
On my third visit, the Chief Neurologist wanted to know if I was experiencing any stress.
“Well, my arm won’t stop twitching, and nobody seems to know why.”
“Before that. What was your life like?”
“Pretty good. My grades are fine. My jobs are sometimes stressful, but nothing too tough to handle.”
“Jobs? How many jobs do you have?”
“Three.”
“And you’re a student full-time?
“Yes.”
“Isn’t that stressful?”
“I haven’t thought of it that way.”
“Has anyone died lately?”
“My grandmother.”
“Did that make you sad?
“Yes. I missed the funeral.”
“Does that depress you?”
“I don’t think so. I hear my cousin brought a gun to the ceremony, so I’m not too busted up over missing it.”
“How’s your love life?”
“Could be better. How’s yours?
“Have you had any romantic stress?
“Unrequited love. But they say that’s a bore…”
“What can you tell me about that?”
”What is there to say? I really like him. He doesn’t feel the same for me.”
“Him? Don’t you mean ‘her?’”
“No, I don’t mean ‘her.’ I mean ‘him.’ He’s a guy.”
“Are you a…” and here, her voice drops to a scandaled whisper, “… a homosexual?”
”I’m queer.”
“That’s a self-hating word. There’s nothing wrong with…” and here she drops back into her hushed register” … with homosexuality.”
“Well, I don’t like that word. It’s a doctor’s word, and it reeks of pathology. I consider myself queer.”
“But queer is an insult.”
“Not to me.”
“Do you hate yourself?”
“Just the opposite. I’m full of myself.”
“How long have you known that you’re a… a, homosexual?”
“Two years.”
“That short?”
“It feels long.”
“How did you feel when you came out?”
“Like a weight had been lifted from my soul.”
“I think you’re depressed about being gay.”
“I don’t.”
“Well, it wasn’t long ago. And that must be a source of stress. I think your arm is psychosomatic. And your recent discovery of your… of your homosexuality… that must be related.”
“You’re saying my arm twitches because I’m depressed?”
“I think so.”
“And I’m depressed because I’m gay?”
“Probably so.”
“Doest it matter that I don’t feel depressed?”
“How would you be able to tell?”
I was young. And in college.
“Fair point.”
“I want to prescribe Zoloft, an anti-depressant, and refer you to a psychiatrist.”
“Is there nothing else you can do?”
“I’m pretty sure there’s nothing physically wrong with you.”
“Well, OK then. You’re the doctor.”
My boss was skeptical that I was twitching from depression. But, she knew a wonderful shrink I could see. He was gay too!
By the time I saw him, the Zoloft had kicked in. I know folks whose lives were saved by anti-depressants. So don’t get me wrong when I say that Zoloft offers emotional stability—but only a notch above the humanly tolerable. Being on Zoloft had all the joy of watching puppies die, 24/7. I’d never been so relentlessly and consistently unhappy in all my life.
I didn’t want to kill myself. But I could hardly bear living that way.
After two weeks of sessions, the psychiatrist decided I wasn’t depressed, and gave me permission to lay off the Zoloft. The four-hour depressant struck him as excessive, so I was prescribed a daily dose of Valium before bed.
The next three months were a bizarre time. I struggled through school, cutting back my course load and my work load. A generous friend who’d dropped out into Silicon Valley wealth covered my tuition shortfall. My grades suffered.
The psychiatrist was really interested in my sexual history. He maintained that my arm was a physical problem. We tried a variety of solutions. I took anti-inflammatories. Vitamin supplements. He doped me up with Barbitol (aka “truth serum”) and dredged my subconscious. I’ll never forgive him for turning off the camera when the topic turned to sex. I had demanded a videotape as a precondition to the procedure. The rest of our sessions he would selectively reference things I’d revealed in a conversation only he remembered.
He finally hit upon a radical suggestion—I should see an acupuncturist. I wasn’t a believer in Eastern Medicine, and had begun to reconcile myself to a future as a quivering wreck. But I hadn’t yet disobeyed a doctor. If he thought it might work, why not give it a try?
I expected a timid little Chinese guy, spouting profound non-sequiturs. Instead, I got a boisterous, burly Brooklyn Jew. He gave me a brief personal history—it was the Sixties, flower-child, kicking it in China, learning the art of acupuncture…
“... Do you think Eastern Medicine works?”
“Honestly?”
“Yes.”
“No.”
“Well, let me explain acupuncture to you. Nobody knows how it works. By all accounts, it shouldn’t. But, it’s five thousand years old, and people can get really good at something with five thousand years of practice, even if they don’t know what they’re doing.”
“Well, OK then.”
I gave him the same report as I’d given the doctors. Sudden shivers. Unrelenting spasms. The end of sleep.
“Did you feel a breeze when you shivered?”
“As a matter of fact, I did.”
“Oh, my gosh! We call that an ‘evil wind!’ I’ve heard of it before!”
“Have you ever seen it before?”
“Honestly?”
“Yes.”
“No.”
“Well, OK then.”
I was directed to lie down on the table. He started throwing needles into my body like little javelins. I didn’t feel any sensation.
He left the room.
I laid upon the table, pierced like Saint Sebastian. A warm feeling radiated across the surface of my skin. I could sense certain points… my temples, my ankles, my dick… they were alive with sensation.
After twenty minutes or so, he returned.
“Feel any different?”
“Not much.”
“Your arm is still twitching.”
“I know.”
“Well, I’ve never seen this before. There was no reason to think it would work. But I’d like you to come back next week.”
“OK.”
He pulled out the needles and instructed me to get dressed. Pulling on my socks, I was surprised to find a needle sticking out of my ankle.
“You missed one.”
“I did? Whoops! Just pull it out.”
I did.
I didn’t leave with optimism. The way I saw it, this was another strange remedy tried. Another oddball long-shot for my shrink to cross off his list.
The next day, the twitch slowed markedly. My arm went from convulsing once per second to once per minute. On the second day, it stopped entirely. I’ve gone seven years without an involuntary twitch.
Four days after that appointment, I called the acupuncturist to report my condition.
“It seems to have worked.”
“It did? I can’t say I expected that.”
“You didn’t?”
“I didn’t.”
“Should I come back?”
”No way! Another session might spark a relapse!”
“It might?”
“Who could say? Do you want to find out?”
“Well, OK then.”
And that was that…
[Ending pulled for revision]
