The Hypochondriac's Guide to Life. and Death. (29 page)

Dr. Korman informed me that I had a disease no one knows much about. I asked him how bad it could get before it killed me, and he said, “It would not be productive to discuss that at this particular point in time.”

So, I said, “Listen, Doc, just tell me the worst thing that could happen. The worst symptom.”

“The worst symptom?” he asked.

“The worst symptom. I want to know. If I know the worst possible symptom, I can deal with anything else.”

“Well, that would probably be what we like to call ‘feminization.'”

Thank you very much, I said. See, that wasn't so bad. Could you have an orderly clean this up, please?

In order to be diagnosed absolutely, I had to have a liver biopsy. This is a procedure in which a doctor with orange hair sits next to you and makes small talk and tells you to look at the far wall, and you think this is because it is necessary to position your body just so, but then you realize at the last minute that he is bootlegging something he doesn't want you to see. It is, basically, a bayonet.

“You will feel a little pressure now,” he says,
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and stabs you in the side. To say it is the “side” is a little misleading, since he inserts it a few inches into your body. Most men never feel anything enter a few inches into their body, except food. For all I know, women find a liver biopsy pleasurable, but let me just say, as a man, that it feels like an unacceptable invasion, kind of like getting an umbrella inserted in your rectum, then having it
opened up and suspended by the handle from a chandelier. Not that I have ever experienced that. Actually, for all I know, women would like that, too.

After your biopsy, you have to lie still for six hours in the hospital's “endoscopy suite,” which consists of yourself and a half dozen people who have had a procedure known as an endoscopy. An endoscopy is a routine examination of the lower colon in which doctors give you general anesthesia and then puff your intestines up with air to check for abnormalities. So, after a liver biopsy, you get to spend six hours lying down, contemplating death, in a roomful of people loudly farting themselves awake.

The first thing Dr. Korman told me is that he would recommend, as an option, that I no longer drink alcoholic beverages. He said this the way one might recommend, as an option, not gargling with scorpions.

Prior to this diagnosis, I drank moderately for a journalist, which is to say I would typically fall asleep each night unconscious in my own drool. Stopping drinking proved to be relatively easy, except for wanting to suck my eyes out with a plumber's helper. It is not so much that I missed the alcohol. I did not miss the alcohol. I missed
being soused
from the alcohol.

As a teetotaler, you will think you are getting along just fine, and then one day you will be at a cocktail party, kind of late, and your friend Joel will be standing there with a glass of wine in his hand, surrounded by other revelers, also holding drinks, and it will be their fourth or fifth drink, and Joel will be observing that the great mystery of humankind is not the existence of God but why only humans possess a state of consciousness, and someone else will respond that his dog, Zsa Zsa, has a soul, and someone else will say he has heard that a goose tastes better if it has been strangled to death, and everyone will laugh, and you will want to be there too. But mostly, not drinking is OK.
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Hepatitis C is not currently curable, but in some cases it can be controlled. It is treated with the drug interferon, which used to be extracted from baby foreskins but now is synthesized from
a bacillus that grows on feces. (Medical science is always making wondrous advances.) Before he prescribed it, Dr. Korman warned me that interferon can have certain side effects. I asked him what they were, and he kind of waffled around and mentioned headaches, and flu symptoms, and a whole web of reported ills. I sighed and said. Look, Doc. The worst.

He said, “The worst?”

Yes, tell me the worst side effect.

“That would probably be the, um, suicide.” I do believe Dr. Korman enjoys these little colloquies.

Fortunately, I have been able to handle interferon fairly well. There are certain problems. For one thing, you have to inject it three times a week into your upper thighs. Now, ordinarily, your thighs are not a particularly sensitive part of your body, compared with, say, your tongue or your eyeballs or, if you happen to have them, your testicles. But when you are on interferon, those things might as well be made from bowling-hall rubber because all of the sensation in your body is concentrated in your swollen, aching thighs. You will be sitting in a chair and a cute little three-year-old child will playfully bound into your lap, and you will playfully swat her down with a two-by-four, if one is handy.

But that is the least of your worries. Interferon's biggest side effect is that it makes you tired and irritable.
How
tired and irritable, you ask? Why do you always have to interrupt me? You think I have nothing better to do than answer your stupid questions?

Interferon works by goosing your immune system, which means that, basically, you never get a cold. The cold germs enter your body, but they don't cause symptoms. The odd thing is that every once in a while, without warning, when you are otherwise feeling fine, a single cold symptom will squirm its way through the drug. Because you are unaware that you have a cold, you are unprepared for this. You will be at tea with the archbishop of Canterbury, for example, and you will be declaiming intelligently about Stendhal and the role of a plutocratic society in the changing global climate when you will suddenly hawk up onto his lap a loaf of phlegm the size of a Denver Bronco shoulder pad.

Interferon is still an experimental drug. It has not been
around that long, and there have been no comprehensive studies done on its long-term effects. Dr. Korman warned me about this. He said it is always theoretically possible that this drug, over time, will cause health problems.

“What sort of health problems?” I asked.

“All sorts of things,” he said.

“Like … a stroke?”

“Could be,” he said cheerfully. Doctors love to tell you about potential complications because it takes them off the hook. If they've warned you, they're clear.

“Could it give me tumors?” I said.

“Possibly,” he said.

“Enormous worms in my scrotum?”

“Can't rule it out!”

“Could my entire body floop inside out, with a sickening squish, so all my internal organs are just hanging out there like a possum on the highway and people would vomit when they see me and I would have to quit my job and become a carnival freak in Calcutta?”

“The literature isn't clear on that.”

Interestingly enough, I have never suffered any actual symptoms from my hepatitis virus itself. My hepatitis virus has spent years quietly doing its job, slaving away, assassinating liver cells, and my liver is still functioning fine. That is the nature of the liver. The liver is not like most other organs, which are small and delicate and highly efficient. If organs were businesses, a kidney would be a tidy French restaurant, with a pastry chef and a
saucier
and a head chef and a maître d' and a small, busy staff of waiters, busboys, and sommeliers, all working together harmoniously to create a daily miracle of art and skill. The liver, on the other hand, would be more like a sanitary landfill staffed by twelve drug addicts and a dog. Now, let's say the hepatitis C virus is a homicidal postal worker with a Kalashnikov assault rifle. Turn him loose in the restaurant, and within a few seconds he will have taken out two or three highly skilled professionals, the delicate balance of jobs will be upset, and the whole restaurant will close up. But send that virus to the landfill, and who cares? A landfill staffed by
one
drug addict and a dog will appear to operate
just fine. Sometimes for years. And then, one day, the gases will ignite. It will not be pretty.

The technical name for the process of the eating away of your liver is “cirrhosis,” though you have probably heard of it only as “cirrhosis of the liver,” since that is the only way journalists write it. “Cirrhosis of the liver” is one of those ridiculous redundancies that journalism is locked into. It is like saying “a heart attack of the heart.” But to journalists, “cirrhosis” sounds somehow incomplete or inelegantly shortened. They would no sooner write about just plain “cirrhosis” than they would refer to “Al Einstein.”

For the sufferer of hepatitis C, there is no shortage of available terrifying literature. Most of it is intended to be reassuring, but when you get right down to it, there is not much reassuring you can say to someone with an incurable, life-threatening disease. When you try you sound a little slaphappy and deluded, like an aerobics instructor in a ward for quadriplegics.

I am looking at art article in
Alternative Medicine Digest
about Naomi Judd, the country singer, who has hepatitis C. She tried interferon but stopped using it. She just didn't believe in putting crazy medical stuff into her body. Instead, Naomi treats herself with “milk thistle,” carrot juice, vitamins A, B, C, and E, beta-carotene, zinc, biotin, folic acid, selenium, calcium, magnesium, potassium, garlic powder, soy lecithin, niacin, plant sterols, extract of calves'thymus glands, acupuncture, chiropractic adjustment of her spine, progressive muscle relaxation, massage therapy, psychotherapy, morning and evening quiet times, prayer, breathing exercises, yoga, and antioxidants. “I feel strongly about antioxidants,” she says. Naomi still has hepatitis C.

Me too. My liver has been damaged. It is possible that at some point in the future I will need a liver transplant to survive. This is not as scary as it might sound. Transplant technology has become so sophisticated that you read in the paper every day about people getting multiple organ transplants; the governor of Pennsylvania recently got a heart, a lung, a liver, a spleen, a pancreas, a kidney, a huge penis, etc.

The main problem is that there aren't enough donors. All over America, perfectly healthy organs are being buried because the
grieving public is not adequately informed about how much good their loved ones' organs could do. Often the problem occurs right at the deathbed, when insensitive doctors fail to properly instruct the grieving relative in his options and responsibilities.

Here is a typical hospital room conversation.

Doctor: I'm sorry, we did everything we could.

Grieving Widow: Sob sob sob sob sob.

Doctor: There's just this one teensy little thing …

Grieving Widow: Sob sob sob sob. Y-yes?

Doctor: Gene Weingarten needs your dead husband's liver.

Grieving Widow:
Snif.
Who?

Doctor: Gene Weingarten. He wrote this book.

Grieving Widow: So he's the one who made my husband die?

Doctor: Well, in a sense, yes.

Grieving Widow: Give me that liver. I'll eat it before he gets it.

Please, don't let this happen to someone you love. Go and fill out your organ donor cards. By the way, while you are at it, specify that you want your liver to go to me, Gene Weingarten, of Bethesda, Maryland. Send me a copy and I will phone you when I get sick, and tell you when you have to kill yourself, and the best way to do so to keep your liver intact.
(Good:
Gunshot wound to head.
Better:
Decapitation by guillotine in hospital emergency room.
Bad:
Drink self to death.
Worst:
Machete through liver.)

I spent a few months recently with Steven T. Mendelson, a thirty-five-year-old Chicago artist who was dying of AIDS. I was helping Steve write his memoirs for
The Washington Post,
and during that time we got to know each other well.

A conversation between an individual who is dying and an individual who is not dying is much more difficult for the relatively healthy person. The relatively healthy person—let's call him Gene—is overwhelmed by the fact that the other person—let's call him Steven T. Mendelson—is dying. It is all the healthy person can think about. It colors every moment. Steve will say something like, “Would you like a cookie?” and Gene will think,
My God, here is this person WHO IS DYING, and all he can think about is my sustenance! He could be consumed by self-pity; ANYONE in his circumstances would be consumed by self-pity. Clearly, this is no ordinary human being. Clearly, this is St. Francis of Assisi!

Meanwhile, Steve will have been holding out the cookie for two minutes. His arm will be getting tired.

He will say, “My arm is getting tired.”

And Gene will think, Good Lord, he is suffering a transient ischemic attack, a precursor to a stroke, which is not uncommon in persons with terminal illnesses and frequently manifests itself in a loss of sensation in the arm. I had better act normal, so his final sight in this life will not be a friend recoiling in fear.

And Steve will say, “Look, do you or do you not want the damn cookie?”

And Gene will think, He is feeling hostile. Of
course
he is hostile. He is facing the ultimate indignity delivered by a cold and implacable universe, an ironic, absurdist drama of release without redemption, finality without closure. Gene will think instantly of Dave Barry's definition of a sense of humor: “A sense of humor is a measurement of the extent to which we realize we are trapped in a world almost totally devoid of reason. Laughter is how we release the anxiety we feel at this knowledge.” Suddenly Gene will be overcome by waves of rolling mirth, huge crescendos of deep, hearty, thunderous laughter, and he will reach out, weeping with joy and grief and love and fear, and engulf Steve in a gigantic gibbering smothering bear hug, and Steve will drop the cookie and the cat will eat it.

Steve had come home to die in the room he grew up in. On the walls were magnificent, elaborate murals he drew at age thirteen or so. They were of handsome, doe-eyed young men in Lord Fauntleroy costumes. As a boy, Steve wore capes, even at home. Not Superman capes, but brocaded things with crushed velvet. Steve, of course, knew he was gay. His siblings knew he was gay. The meter reader knew he was gay. The only people who did not know he was gay were Steve's mom and dad, who were smart and perceptive and loving individuals unfortunately blinded by PDS,
parental denial syndrome. This is the same syndrome that caused parents in the 1960s—my parents, for example—not to realize that their son was stoned when he came home wearing his clothes inside out and fell asleep with his face in the beef Stroganoff.
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