First Person: The Killer Inside Me | Miscellany | Chicago Reader

First Person: The Killer Inside Me 

Everything You Never Wanted to Know About AIDS

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I'm halfway through spring rolls at Dee's on Armitage when I get this warm dripping sensation inside my head that, nine times out of ten, tells me I'm about to get a torrential bloody nose. I make an invisible check mark in the air for the waiter. He brings the bill. The blood is running out of my nostrils down to my lips and tastes a little salty. I pinch my nose with a thick cotton napkin to stop the flow, and a suburban-looking couple just across the aisle shifts nervously at the sight. They'd really shift if they knew it was AIDS blood.

Technically I don't quite have AIDS. Still, my blood is lethal. When I leave Dee's, homeward bound with the soaked napkin, I walk past a 7-Eleven and flirt with the idea of holding up the store. Just a fantasy, mind you. I'd wave the bloody napkin and scream "AIDS blood," and I'm sure the cashier would empty the register for me.

Eight years ago, at the age of 21, I tested positive for HIV. You'd never guess I carry the virus. I have no outward symptoms, I'm pushing 220 pounds after the holidays, and some people say I'm handsome. You wouldn't think twice if I sat next to you on the bus and coughed on you.

My lack of outward symptoms sometimes frustrates people. I find that folks who don't know much about the disease need tangibles. They look for something like a lesion so they can keep a safe distance. They study me closely when I confide that I'm positive. They hunt for something, anything that says "He has it and I don't."

People love to know how I got the virus. They want to know if I'm gay or a drug addict or a gay drug addict. They lust for details. Sometimes they're too polite to ask, but they always somehow get around to the topic. I turn things around by asking why they want to know. But I already know the answer. It's the same thing that makes us gape at highway accidents.

V.C., a 30-year-old man, tested positive for antibodies to HIV in February 1989. At the time he was living overseas and returned to Canada in the summer of 1990 at the insistence of his parents who had visited him and were shocked at his physical frailty. V.C. was a talented artist and was known for his eccentric and unpredictable behavior.

--Anne Katz, "Clinical Case Report," AIDS Patient Care, August 1994

Although I look healthy, my health is declining. To date, the most common barometer of immune function is called a CD4 count, informally known as a T-cell count. More or less, it measures the amount of disease-fighting cells in blood. A T-cell count for a healthy adult is in the neighborhood of 1,000. When the count of an HIV-positive adult dips to 500 or less, most doctors recommend starting an anti-HIV medication such as AZT. If your count consistently remains below 200, you qualify for an official AIDS diagnosis. My T-cell count rises and falls, but generally it falls. Three months ago, for the first time in my life, my T-cell count dropped to 191.

For better or worse, I've been around the HIV community for a long time. I can't help but notice things that don't get vocalized, issues that don't make the papers, feelings that don't get discussed. For instance, my fantasy about holding up a liquor store with my own blood makes terrible cocktail conversation, but it's a thought I'd bet many people with HIV entertain.

During the past decade mainstream society has vilified people with HIV. At some level they think we deserve what we got. AIDS organizations and people with HIV have countered with a kind of public-relations campaign to change the image of people with HIV, to present them in a positive, nonthreatening light. Already ashamed of having the virus, many people with HIV feel even further pressured to hold back unattractive emotions like anger or envy. They won't openly discuss sex, even though unsafe sex happens all the time. I know many people with the virus who've thought of taking a swan dive off the top floor of Watertower Place, yet open discussion of suicide is subtly discouraged. In fact, the whole topic of death tends to be avoided.

Of the many unspoken realities within the HIV community, none is more damaging than the polarization of those who have symptoms and those who don't. You'd think everyone with HIV and AIDS would band together, but these two groups don't mix well. In one corner are the "HIV-positives," who dislike the harsh label of AIDS and are quick to point this out. Generally they lack symptoms, have T-cell counts above 200, and haven't been hit with a serious infection. Too often they smugly believe that they're somehow superior.

In the other corner are those with AIDS, people who've endured one of the 26 infections that define AIDS or who have undeniably low T-cell counts. Many of these people understand that they will not outlive the epidemic, have acknowledged their mortality. These are not people who have given up on life. They're just coping candidly with death.

I've seen firsthand the friction between the two groups. Asymptomatics don't like to rock the boat. They take their vitamins and quietly ignore the issue. It's easy for them to buy into "AIDS optimism." After all, real sickness is down the road, out of sight. The conflict comes when asymptomatics cop an attitude about being healthy. And they do, although being too obvious is a major breach of political correctness and AIDS etiquette.

Of course there are exceptions to any generalization. But the majority of those with the virus--and there are at least one million of us in the United States--do little but keep it a secret. Whether it's a coping mechanism, denial, or a way to hang on to health insurance, it's the way most people with the virus live. In my opinion, this secrecy stems from shame. Maybe there's nothing wrong with shame, but I'm tired of it. I believe that to live quietly in the closet, as so many people with HIV do, is to spend the last years of life as a coward.

[V.C.] had extensive KS and a CD4+ count of 56/4 percent at this time. Records indicate that he had been prescribed [AZT] 300 mg daily but he was not compliant and preferred complementary therapies including a whole food diet, visualization, meditation, and a range of vitamins and minerals, and Chinese herbs. He was taking dapsone 100 mg every other day as well as acyclovir 600 mg for control of refractory Herpes simplex stomatitis. In February 1991, he stopped taking all medications and began using an experimental therapy called Cancell which he claimed would cure him of the KS and the HIV infection too.

The view from high over Michigan Avenue is really something. The boats and the cars and the people crawling around like ants in the streets. Sometimes you can see the shore across the lake, but it was hazy that day eight years ago when, sweating and gripping the arms of a red vinyl chair in a doctor's office on the 13th floor of a Michigan Avenue office building, I was told I'd tested positive for HIV.

To cope I joined a support group. I started taking vitamins and AZT, which was then still experimental. Slowly I got on with things. The drug seemed to work, and my immune system seemed to stabilize. I was eager to hear the AIDS cheerleading that was popular at the time. People like Louise Hay cranked out books and speeches about how a positive attitude makes a difference and how HIV would soon be a controllable chronic condition like diabetes. I wanted to believe it was true. I convinced myself that I would be here for the cure. I would survive.

For years having HIV was easy. I had no symptoms and I had a stable T-cell count. I didn't understand why it couldn't be the same for others. Like this guy in my support group who started getting really sick and had to tote an embarrassing plastic ball that pumped medicine into his gut. I couldn't look at him. I was ashamed of having the virus and to compensate I avoided, even resented, people who were sick.

A year ago I helped launch a cheery HIV life-style magazine. It seemed like a great idea. The publication, called Plus Voice, optimistically focused on the nonmedical aspects of living with the virus. Naively positioned as an independent nonprofit corporation, the publication folded after one issue, a victim of tough luck and bad management. Nonetheless the premier issue caught a good deal of media attention. I was interviewed by a New York Times reporter, who wanted to know how I managed to stay healthy. I said it was clean living. I said that people with HIV are living longer and happier lives. I told America the key to life with HIV was attitude.

This is my retraction. Clean living has nothing to do with the progression of the disease. I wish it were true, but it isn't. Attitude may enhance quality of life, but it won't extend it. Clinical studies have consistently failed to support the notion that "healthy" life-styles--exercise, stress reduction, reducing recreational drug use--after infection can significantly influence the course of the disease.

In April 1991 [V.C.] reported feeling depressed with his life in Canada and attempted to lacerate his left wrist with a Swiss Army knife. The laceration was superficial and he admitted this was an attention-seeking act. One month later he travelled to the east coast of Canada to visit friends and to learn hairdressing. Friends in that city called his parents after two weeks to say that he was no longer welcome and he returned home.

Still, we've all heard stories about people surviving AIDS. I followed up one of these claims. I picked up a copy of a recently published book called You Don't Have to Die: Unraveling the AIDS Myth. Certainly it sounded optimistic--I suppose it should for $14.95. As I flipped through the pages, one sentence jumped out: "AIDS does not have to be a fatal disease; an increasing number of people with AIDS do recover." I checked the footnote, which cited another book, Surviving AIDS, by Michael Callen.

Reluctantly I spent $12 for that book. The book jacket reads: "In 1982--the year Michael Callen was diagnosed with AIDS--his prognosis was grim....But eight years later, Michael is one of hundreds of long-term survivors of AIDS who are still alive and doing fine....This is a book that brings hope to those who feel hopeless." Inspiring, I thought. Except for the rude fact that Callen died last year of AIDS.

Yes, it's true that people with AIDS are living somewhat longer. (Callen held on for 12 years with advanced AIDS.) But the increased time is not due to attitude or exercise or spiritual growth. It's due to pharmaceuticals that treat opportunistic infections. Period. And for people with late-stage AIDS the extra time isn't pretty. It's spent vomiting and crapping in your pants.

On July 7, 1991, [V.C.] pulled the feathers out of a budgie belonging to his parents, adopted a puppy from the local humane society, and left his city residence. He purchased airplane tickets to Australia, a $48,000 car, as well as other items of clothing and accessories. He was arrested by police for failing to pay for purchases at a gas station and returned to his parents.

AIDS is harsh. So I understand why people prefer to view the disease as a political cause or the theme of a black-tie, red-ribbon benefit. Why Liz Taylor is our official celebrity spokesperson, Annie Leibovitz our campaign photographer, and Tom Hanks our contemporary-movie-star advocate.

A happy spin is also evident in the host of new magazines about HIV. One mail-order pharmacy publishes a slick self-promotional "magazine" that makes AIDS seem like a bad case of indigestion. Then there's A&U: Art and Understanding, the international magazine about AIDS literature that recently converted to a glitzy four-color format.

But the most-glamorous award goes to Poz magazine, launched just last year. This national, trendy, upscale publication about HIV offers celebrity profiles and shopping tips and fashion spreads. Dying never looked so good.

I'm having trouble putting a happy face on AIDS. Quilts make me itch, red ribbons clash with my wardrobe, and I'm afraid to buy those AIDS stamps because the cashier might suspect I have it. I keep thinking AIDS is just a disease that causes death--a slow, painful, and undignified death.

[V.C.] showed little insight into his situation and told the admitting psychiatrist that he was cured and wanted to publicize his story so that thousands of lives could be saved.

The average time from initial infection to AIDS is 8 to 11 years. Scientists once thought the virus was dormant during most of this time. They were wrong. New research reveals that the virus and the immune system are locked in a fierce battle from the onset. Each day millions of new virus particles are produced, and millions are killed by the body. The battle continues for years. The body loses a little ground each day, until it can't protect itself on any front and gives way to infections. There are no drugs or vaccines in development that can halt this process.

[V.C.] grew progressively weaker while at home and by the beginning of October was too weak to stand. His parents could no longer manage him at home and he was admitted to the palliative care unit of a local hospital.

So living with HIV means the number of pills per day creeps up. One day's medication for a friend who has yet to be diagnosed with advanced AIDS consists of AZT, ddC, and a protease inhibitor to confuse the HIV; Bactrim for pneumonia, Diflucan for thrush, Zovirax for something I never could spell; Marinol for appetite, Imodium for diarrhea; Mycobutin for MAC (a weird strain of TB that infects only birds and people lacking immune systems); Zoloft for optimism, Halcion for sleep, Xanax for peace; and Compazine so all these pills don't make him sick.

I take my share of pills, but I'm still feeling signs of a losing battle. I have itchy red bumps on my skin that no one can explain. My toenails have slowly grown discolored. My allergies have gotten worse. Jock itch goes on and on. The dark circles under my eyes look a little darker. Hot sauce hurts my tongue. And my lymph nodes get sore for no particular reason.

By themselves these little things are nuisances, but together--with all the itching and scratching and creams and pills and relentlessly boring waiting rooms with torn and dated magazines--they give me the message that I'm not unique, that I've used up my 8-to-11 years, that I'm going to die, die of AIDS, and die soon.

This is not a self-fulfilling prophecy. This is not because I can't think happy thoughts. This is not because I'm doing anything wrong. I'm just getting AIDS.

A neurologist at this time found [V.C.] to be alert and cooperative. His long-term memory and serial 7s were normal and he remembered [two of three] objects at 3 minutes. However, his smooth pursuit was impaired and he showed weakness of all muscle groups....He had diminished touch, pain, vibration, and joint sense in the lower extremities.

Death gives me the willies, and I cope by getting stoned, really stoned, and painting the kitchen yet another color. But I can't ignore the aching in my lymph nodes. I get anxious and start poking my neck and under my arms and in my groin to check the state of my lymph nodes. Some days they seem about to explode.

It's not the actual disease. It's the threat of it. The day in and day out with a loaded-gun-to-your-head feeling can make you a little wacky. Forget a pill one day and--bang. With time, you get scared. You get desperate. You start groping. And suddenly the cucumber-root injections to the stomach you heard about don't seem so bad.

[V.C.] was given palliative support during his stay on the unit and died peacefully on October 21, 1991.

A friend of a friend, whose lover died with one eye wide open, swears that when the moons in your fingernails disappear you finally get sick and die. I have seven moons to go.

Art accompanying story in printed newspaper (not available in this archive): illustration/Tom Herzberg.

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