Me and My Mystery Disease

One week into the New Year and I'm feeling pretty blue. Had to leave my sweetheart, my darling, my paramour back with 2001. Oh HAL, things just won't be the same without you. n I scroll down my inbox and notice an unopened letter dated several days ago. It's from my Ivy League intern. Subject: One in a Million. Seems rather romantic for the prickly I.V. Last e-mail she sent was titled Lauri the Retard. I open the letter. She's posted page 233 of The Bell Jar.

Flashback to July: Me and I.V. under the weeping cherry tree. We're sitting in my backyard on a warm starry night, Cuervo Gold coursing through our veins. The subject that comes up came up, as it so often does when girls get giddy.

"First time?" I ask.

"In a car."

"Classic."

"How 'bout you?"

"In a bed."

"Boooorrrring."

"In a strange city."

"Better."

"With an older man."

"Hot."

"Whom I barely knew."

"Cookin' with gas."

"You ever read The Bell Jar?"

"Yeah, I wrote a paper on it sophomore year of high school."

"Remember the part where... "

"Oh, yeah... Oh, no."

I tell her the tale of Buster Cherry and how he done it with his li'l hatchet. "Paint the town red?" I asked when it was over. And there was enough blood to do it, too. We watched the Red River flow. No way to dam it. Buster called a doctor. Prescription: Flat on your back, legs up. Gee, I thought, isn't that how I got into this mess in the first place?

When I get home, I call my girlfriends and ask them, "So, how many pints?"

"Just a drop," was the common answer, "not the whole bucket."

Must've done something wrong, I thought. But what? I'd assumed that Buster would have the whole shebang down pat. Turned out he was quite a newcomer in the realm of the maidenhead.

Sixteen years later. It is July again, same July, not a warm starry night, but a bright summer day. I am no longer sitting under the weeping cherry tree with I.V., drunk on firewater, discussing the pitfalls of lust. I'm weeping under the fluorescent lights in the emergency room of St. Francis Hospital. A fiery pain burns in the pit of my belly and my tears have failed to extinguish it. I clutch my abdomen and double over. My cries echo down the hall. The room is empty; the entire hospital appears to be empty.

But no. I am well tended to. The doctors and nurses seem quite happy to have someone to practice their trade on, unlike my Manhattan MDs, who've all fled Metropolis for the summer. I am whisked into a private examining room, where I sit defiantly, clasping my notebook to my breast, peering at the nurse from beneath my dark glasses.

"Are you pregnant?" she asks in a motherly tone.

"No."

"Have you ever been pregnant?"

"Yes."

"Do you have any children?"

"No." Tears begin to trickle down my cheek.

"It's okay," she assures me. "I'm not here to judge." There is nothing to judge. Last time I checked, spontaneous abortion was legal in every state. "Wouldn't you like to put this down?" she asks, making a play for my journal.

"No!" I shout, as I yank the crimson spiral-bound from her hands.

"What are you writing?" she queries gently.

"Comedy," I whisper, as the trickle becomes a stream, as the stream becomes a torrent.

"Sweetheart, calm down," says the ER doc. "This'll be a whole lot easier if you just relax." I kick, I thrash, I scream. The nurse restrains me. No wristcuffs, just an embrace. She holds my hand and strokes my hair as the doctor takes some cultures. "I just need to scrape some cells from your cervix. It's very red, very inflamed. Have you had problems there before?"

"I had a polyp removed last year."

"Benign?"

"Yes."

"Well, I think you've got a pelvic infection, but the tests won't be back from the lab for a week. I'd like to go ahead and start you on antibiotics now. And I want you to see a specialist as soon as possible, within the next three days."

?

Monday morning I call my arrogant Belgian gynecologist. He doesn't make my top-10 favorites list, but he's got my chart. And I have to admit, the man gives a damn good pelvic. But Palm Frite is unavailable. His service refers me to his covering physician. Dr. Strangeglove performs a grueling bimanual. He is lacking Frite's finesse and his clumsiness is matched by an utter lack of tact.

"Are you depressed? You look depressed."

"Well, you're not the most fun I ever had."

"They've diagnosed you with pelvic inflammatory disease," says Dr. Strangeglove, as he fingers through the hospital report.

"Yes?"

"PID is an STD."

"Then I don't have it," I answer most assuredly.

"Are you absolutely certain?"

"Yes."

"And your partner, what about him?" Talk about adding insult to injury. What's next, a salted swab? "Is it possible..."

"No."

"Well, you can also get it from an IUD."

"No IUD. No DUI. I'm clean and sober. Immaculate infection?"

"Let me call your GYN."

Palm Frite agrees to squeeze me in. He tries out a brand new toy. Transvaginal Ultrasound; a new play by Eve Ensler? Well, it's not my kind of game. I prefer the more superficial pelvic sonogram, a purely external procedure that involves a squirt of lube and a supermarket scanner. Supermarket Sweep? The Price is Right? If I weren't paying for this, I'd feel like a real tart. He stuck in his thumb and pulled out a plum and said...

"You're bleeding. Do you bleed easily?"

"It's a talent, what can I say?"

"Your sonograms look normal. I'll call you with the other test results at the end of the week."

"Why am I in so much pain?"

"It sounds like you may have ruptured an ovarian cyst. It can be excruciatingly painful and recovery can take quite a while. But I think you'll be just fine."

I am not fine. I call Frite's office requesting a stronger painkiller. Request denied. "I told you you're fine!" he shouts in his lowlander's accent. "Your sonograms are perfectly normal!"

"But..." I burst into tears. Why is he refusing me relief? I've never asked for painkillers before, not even after surgery.

Frite hangs up on me. Oh, he's low all right. I am incensed. I vow never to speak to him again.

The next day I awake with my eyes reduced to slits, my lips practically touching my nose. The inflammation has become external, too. I refuse to confront Frite, so I allow my guy to do battle for me. We are told that the swelling is probably a reaction to one of the antibiotics prescribed at St. Francis. He recommends that I stop it at once. "She's in agony," says my fella. "She'll be fine," says Frite.

August is the cruelest month. After Labor Day weekend, Doc Holiday will return. Perhaps he can solve this puzzle. I watch the calendar, I wait and worry. So close and yet...

The pain worsens. I call Dr. Strangeglove. He is on vacation, too. I am referred to his covering physician, with whom I make an appointment. The covering for the covering, Dr. Duvet. Duvet has a much better bedside manner than Strangeglove. He is kind, gentle, respectful. He listens to my litany of complaints, then to my heart, lungs and belly. Duvet prescribes antispasmodics and tells me to get a CAT scan if I'm not feeling better in two weeks.

September comes and not a moment too soon. Doc Holiday returns to a stack of reports with my name on it. He reviews my record, puzzles over the odd assortment of ills. "Some bodies just don't go by the book. But I'm used to difficult cases." He apologizes profusely for his colleagues' rude behavior and promises to do his best to make a diagnosis. "Most doctors won't admit this and most patients don't want to hear it. But I know that you already know. There's a reason they call this the 'practice' of medicine. We haven't perfected it yet."

"What about the CAT scan?" I ask.

"I have a feeling this might be too subtle to show up on a scan. But let's cover our tracks and follow Duvet's advice."

?

"Barium? Isn't that what they put in rat poison to make the vermin implode?" "That's barium carbonate," says the technologist. "This is barium sulfide. Makes you glow in the dark."

I'm given a 40-ounce and an hour to drink it in. It's a vile cocktail and every swallow burns. One hour and 25 ounces later I'm as green as a tortoise, tearing out my hair because I just can't manage another sip.

"Don't worry about it," says the exterminator, er, technologist. "You're a wee thing. I'm sure you're lit up like a Christmas tree by now."

The paper dress hasn't made the autumn fashion scene. I'm given a coarse blue cotton gown instead. I clip-clop down the hall, expecting to find a torture chamber at the end. The nurse opens the door and?did somebody say Christmas? My every wish has come true. I am onboard the spaceship Discovery. I bypass the control panel and head straight for the bed.

"On your back, robe open, arms over your head," instructs the technologist. A low-pitched computerized voice tells me when to breathe and how deeply as I slide back and forth through a dark tunnel via remote control. Oh, it's a veritable space odyssey. And talk about afterglow.

"HAL, you're the best. When I'm with you, I just dig-it-all."

"You too, babe. We'll go away together, I promise. Someplace romantic, like Trinitron. But right now, I've got another pelvis to scan."

?

The CT is normal, as are my blood tests and urinalysis. But my insides continue to ache and the pain is spreading upward.

"I'm stumped," says Doc Holiday as he looks over my travailog. "I'm sorry. I wish I knew what to tell you."

"Have you given up on me?"

"No, not at all. I'd like to keep a closer eye on you, see you every two weeks until we figure this thing out. And I want to run some more blood tests. There's no sign of infectious or inflammatory disease, but I'm wondering if you might have a metabolic disorder. There's one in particular I'm looking for?acute intermittent porphyria. It's quite rare, usually hereditary."

"My family's quite healthy. Physically, that is. But they think I'm the one who's crazy."

"Do you think you're crazy?" he asks. I shake my head no. "Neither do I. But be careful who you talk to about this. People won't understand. If there's no name for it, they won't think it's real. They'll tell you it's all in your head, which will only make you feel worse." He gives me a pat on the back and a prescription for narcotics. "Hang in there, kiddo."

I am curious about the rare disease. Acute intermittent porphyria; AIP, better known as Vampire's Disease. Bloody dangerous illness, deadly in fact. I'm not that kind of ghoul, I say to the empty mirror.

October passes. My friends abandon ship. They've tired of my complaints. I'm alone, adrift and seasick. Seasick, not c-sick, mast, not mass.

But there are nodes in my groin, left side. The specialist squeezes me in for a quickie. "Can't tell if they're rooted in tissue, bone or muscle," says Dr. DoLittle. He sets up a pelvic sonogram. No barium cocktails before the show, but I do down two liters of radium-tinged New Jersey water. A full bladder is necessary for a good pelvic scan.

The technologist was a cute young South Asian guy with a good sense of humor. But a comedian's the last person you want to be around when your bladder's about to bust. I tell him about the nodes, direct him to their whereabouts. He's unable to find them at first and insists that there's nothing there. Finally one of the nodes shows up on the monitor.

"Swollen lymph gland," he says, skeptical of the spectacle. "Sometimes these things just appear out of nowhere. They float through the body freely?expand, contract, disappear completely. Nobody knows why."

Nobody knows why.

I have a white Christmas. I puke up barium on the front lawn after a series of X-rays?GI and small bowel. I tell myself that GI stands for Government Issue.

Doc Holiday's not over yet. "Is this where it hurts?" he asks. "Nothing wrong with your muscles, that's for sure... There's a nodule here, on the left side." And a lump in my throat. I start to cry. "I want you to see Dr. Frite as soon as possible. Call today. Tell him you need a sonogram. Tell him I sent you."

I phone Frite from the street and get sassed by a very saucy dip. "If you need a sonogram, you have to go to the hospital."

"That's not true. I've had three of them right there in the doctor's office."

"Are you a patient of his?"

"Yes."

"New patient?"

"No. I've been seeing him for over a year. He removed a polyp from my cervix in September 2000."

"Dr. Frite is a man."

"Yes. I'm well aware of his gender, as is he of mine."

"I thought you said she."

"Well, I didn't."

"What did you say?"

"I said I need a sonogram. I need a sonogram and I need it now."

"And what are your symptoms?"

"Pain, bleeding, nodule."

"Hold, please, while I speak with the doctor... Ms. Bortz, can you come in right away?"

I walk the mile to Frite's office crookedly.

"I know. I know this is unpleasant. I'm sorry if I'm hurting you. Try to relax. I know it's difficult. It'll be over in just a minute."

Once again, the sonogram is normal. I'm dismissed with a smug look and a prescription for antibiotics.

Two weeks later, I'm still bleeding. "There is no physical reason for it," scolds Palm Frite. He washes his hands of me, gives me the name of a specialist, a female doctor, who will "assuage my fears."

I journey to NYC to see the one who'll "assuage my fears." She's a gynecological oncologist. This cundoctor says, "In cases like these, the pain can last a lifetime." That sometimes the only way to stop it is to remove the offending organs, "perform a complete hysterectomy."

Am I awake? I pinch myself and look at the calendar, expecting to open them to February 1902. But no, it's 2002.

I miss you, HAL. Why did I have to be so forward-thinking?

"You've come a long way, baby."

"Well, lemme tell ya somethin', sweetheart?the future just ain't all it's cracked up to be."