Pioneering gay actor Michael Kearns opens another closet door—on hepatitis C.

By Michael Kearns
Photo by Zack Goldberg

Tia, my 12-year-old daughter, rarely cries. When she does, a cascade of telltale tears sprinkles down her round, brown cheeks. Yet she remains resolutely silent, determined to keep the extent of her pain private.

“The biggest thing we face is hiding,” says actor Michael J. Fox of people, like himself, who suffer from the debilitating condition, Parkinson's Disease. “Don't let them see it, mask it, cover it up.”

Tia and I are snuggling and watching one of those Sunday morning political pundit shows. While Fox's sparkling persona remains engaging and articulate, his body seems to be engaged in a hyperkinetic fight with itself.

Fox is remarkably healthy in spirit, perhaps even heroic, considering his decision to face the cameras with his impassioned plea to fund stem cell research—especially in a town where laugh lines are cause to stay home until the next botox injection.

As I watch Fox, I realize that his perceptible inner peace, in spite of his exterior chaos, is in direct proportion to his refusal to hide.

In a culture where every lurid detail of your life is available for a price—from the Web sites you visit to the purchases you make—perhaps pain is one of the few things we can keep to ourselves. Or can we?

Sorry, I can't. Once you've screamed “Silence equals death” on the frontlines, you accept that life is a series of coming outs. I've learned that self-acceptance is more likely attainable by stringent self-revelation. I've swung open the door to the gay closet, the addict closet, and the HIV closet. I am now choosing to come out of the hep C closet.

Unlike Parkinson's maniacal manifestations, 80 percent of people with hepatitis C show no signs or symptoms. In fact, the hepatitis C virus (HCV) can hide in your body for 20 years. And even after you begin treatment—not unlike HIV—you can maintain a dangerous and duplicitous equivocation (“Don't ask, don't tell”).

I received a phone call in the fall of 2001, not long after Sept. 11, from a sex buddy who was calling from his hospital bed to inform me that he'd contracted hepatitis C and might not survive. A flight attendant with cross-country conquests, he must have been making more than a few long distance calls. “You should get tested,” he said.

While what we did sexually could be considered “safe sex” by most standards—especially those adopted by many poz-poz couplings (no semen exchange but not overly cautious about tiny cuts or abrasions that might contain blood residue)—there was still reason for concern that I could be carrying the virus. In fact, he told me, barely above a pained whisper but without a hint of resentment or regret, I could have potentially given it to him.

How? Blood. The Centers for Disease Control estimates that injection drug use accounts for 60 percent of all new cases of hepatitis C and sexual transmission accounts for another 15 percent.

If you consider the idiosyncrasies of sexual expression that might, unwittingly or not, include blood exchange, 15 percent seems like a relatively low figure. Factor in the possibility of the virus lying dormant for two decades and the likelihood increases exponentially. Can anyone who has been sexually active since the mid-’80s—when HIV transmission still remained a bit of a mystery—be absolutely certain that blood-to-blood transmission hadn't occurred?

Other ways HCV can be spread include blood transfusions (before 1992), exposure to blood from tattooing with unclean needles, or sharing personal items such as razors and toothbrushes that might have blood on them. The virus can also be passed from a mother to her unborn child.

Although my doctor felt that testing positive for hepatitis C was “unlikely,” I took the determining test. As certain as I was that I would test positive for HIV in 1989, I convinced myself that I would not test positive for HCV in early 2002.

Wrong. Seems that at least one of those many men who visited my body left a memento, proving that he was not only a trick or a boyfriend or a lover but also a blood brother. Whether HIV or the common cold, there is frequently a compulsion to identify who gave it to you, as if giving the illness a human face will render it more understandable.

In my case, it's a multiple-choice question and one I choose not to ponder. The dubious answer could either lift me to romanticized heights or hurl me into the depths of shame. Neither response would be conclusive or constructive.

My name is Michael and I'm a coinfected. Being coinfected with HIV and HCV ain't for sissies.

I've been shadow boxing with the Grim Reaper for virtually one-third of my life, having gone through Elizabeth Kubler-Ross's Five Stages of Dying more times than Liza has gone through the wedding vows. I'm fully aware that I may not be around to luxuriate in the notion that 60 is “the new 40.”

Therapy remains less effective in coinfected patients compared with HCV monoinfected individuals. Hep C infection can linger for years while clandestinely damaging the liver before wreaking havoc in the rest of the body. The CDC estimates that one-third of people living with HIV are coinfected with HCV. Because early treatment holds more promise, the most recent U.S. Public Health Service/Infectious Diseases Society of America guidelines recommend that all persons infected with HIV should be screened for HCV as well.

Because there are often no visible clues or internal signs when a person is first infected with HCV, public awareness has been dangerously slow, considering estimates indicate that 2 percent of the U.S. population carries the hepatitis C virus.

As I had 13 years prior, after learning I was HIV-poz, I decided to hold off treatment as long as possible, even though there was hope: Unlike HIV, the treatment for HCV, while hardcore, can completely rid one's body of the virus.

Having just begun injecting myself with the drugs, like a tainted junkie in an Andy Warhol movie, my HCV viral load had successfully become undetectable when I was involved in a near-fatal car accident in January 2005. A car, spinning maniacally out of control, plowed into me head-on while Tia and I were traveling on the Hollywood Freeway.

Tia suffered a broken clavicle while I sustained battered flesh and bones, especially to my right leg that had desperately stomped on the unwilling brakes.

Three months later, a staph infection invaded my fragile immune system, cleverly finding a direct entryway through the two puncture marks on my tummy where I'd been faithfully shooting my hep C meds. One of the infections mushroomed to the size of a grapefruit while the other one remained the size of a demure lime. Both had to be lacerated, leaving scars that disqualify me from doing any future Calvin Klein underwear ads. The doctor later told me that, because I was so immunologically impaired by the hep C drugs, the staph infection “could have killed” me. I tried to recall if that flight attendant was good sex. (He was.)

While my stomach wounds drained for several excruciating weeks, I was immediately taken off the drugs, allowing the HCV to make a comeback.

Restarting the rigorous treatment in July of this year, I've completed nearly six months of a 72-week drug decathlon. Among the laundry list of side effects that can take hold, resultant from taking Pegasys and Copegasys, are headaches, hair loss, digestive problems, dizziness, rage, mouth ulcers, psychosis, skin rashes, hearing loss, brain fog, insomnia, muscle aches, fevers, fatigue and depression. And then there's anemia that requires its own therapy, triggering a host of its own side effects.

So I've been hacking like Camille, raging like Mel, and breathlessly delivering Marilyn's line from Bus Stop, “My mouth's so dry I could spit cotton.” Other than using it to urinate excessively—the result of drinking gallons of water to offset dehydration—my penis is officially on hiatus. When I added testosterone to my mixed salad of meds, I had visions of an erection 24/7, transforming me into an old, gay Charlie Sheen. I don't think I'd get heated up unless Patrick Dempsey showed up at my door in his scrubs to take my temperature. Fortunately, I haven't had to make an appointment to try on an Eva Gabor wig.

“Are you suicidal?” is the first question my doc routinely poses at the start of our weekly appointment. She's a no-nonsense type whose directness I wholeheartedly appreciate. After we establish that I won't slit my throat any time soon, she often makes a wry observation. For instance, referencing my degree of anemia at the time of Halloween, she suggested that I could forgo a costume and go out trick-or-treating as a ghost. Only then did I feel suicidal.

In truth, killing myself is not an option, not as long as I can function as Tia's dad. The greatest side effect that I've experienced from this round of Life's Lessons is not listed anywhere in multiple pages of HIV and HCV literature combined. Nowhere have I found the words “separation anxiety,” and yet that's clearly the condition that has taken hold of me more than any of the others have. The thought of ever having to say goodbye to that kid of mine relentlessly grabs me and tugs on my every nerve ending (even more than the neuropathy).

This realization—that life is even more tenuous today than it was yesterday—has resulted in unpredictable and ineluctable changes. I take great pride in my aggregation of plants, many purchased from the 99¢ Only Store. I'm studying American history, particularly Lincoln's White House years. But more than anything, I try to be thoroughly present for Tia (but I often feel more successful with greenery and Abe).

She's taking tennis lessons in Griffith Park on Wednesday evenings, as the sun vanishes and the air becomes so crisp that you can almost hear it crackle. Or maybe it's the tennis balls I hear, zooming back and forth across the net, making popping noises as they land, creating a percussive soundtrack as I study the nuances of her every move.

She's fierce, beautiful, graceful, tough, smart, powerful and oh so funny. As I was indulging in some sentimental thought—"I wonder if she'll cry out loud when I die?"—she must have been reading my mind. In what seemed to be a telepathic response, she decided to let her tennis teacher know how hard he was working her by feigning exhaustion and fake-falling into a heap, dramatically splayed—long arms and legs outstretched in a fashion magazine pose—on the ground of the tennis court.

For now, and perhaps forever, we live in each other.

Michael Kearns can be reached at www.michaelkearns.net