A strange thing happened to Larry McKeon on his way to dying.
Diagnosed with HIV in 1989, McKeon reacted with a combination of roller-coaster emotions. One minute he was tearing his kitchen apart in a futile fit of rage, throwing dishes and Tupperware and punching holes in the walls. He was furious with God, furious with life, furious with anything at all that suggested a divine power was at work in his suffering. Then the next minute, he was whimpering into the shoulder of a Catholic priest friend trying to help him find comfort in God’s greater wisdom.
“I was going to die in a year, that was the only thing that was certain,” McKeon says now.
As gay men living in a large American city, McKeon and his partner Ray had already become familiar with the devastation of AIDS all around them.
“So many of our friends were sick,” said McKeon, 58, now the state representative for the 34th District in the Illinois House. He’s tall, broad-shouldered and big-chested. He also tends to stand ramrod straight in a way that may come natural to an ex-cop. To anyone who doesn’t know he has AIDS, McKeon’s downright robust.
But though he’s big and manly, there’s also something unassuming, almost shy about him. “We were going to three and four funerals a month,” he added of those long-ago years, shaking his head.
Shortly after McKeon’s diagnosis, Ray, who had gotten notice on McKeon’s birthday that he had full-blown AIDS, died.
“I was devastated–that’s not even the right word, I can’t even think of the right word,” said McKeon. “The whole time, I kept imagining him there. Every time I went in the fridge, I would turn around wanting to ask him if he needed anything.”
And, he knew, with his own HIV-positive status, that the other shoe could drop at any moment. It was as if he’d lost everything in a handful of weeks: his lover, his health, all of his bearings, any chance for a future.
“AIDS is fatal,” he said. “That’s what we knew, that’s how it was. You would die, and die pretty quickly.”
A one-year plan
But McKeon is a practical person. He made a one-year plan, which he considered optimistic. He dropped out of his master’s program in public policy, he got his will together, he started making plans to say goodbye to people, and even mapped out his memorial service.
“I even knew what the theme song was going to be,” he said wryly, “and it wasn’t `Wind Beneath My Wings.'”
Meanwhile, the lethal virus was eating through his immune system even as he was knotting his tie or pumping gas: Dead man walking, dead man buying groceries, dead man weeping from a strangling loneliness, dead man getting his shoes shined, dead man. …
“Except, I kept not dying,” McKeon said with a chuckle.
Something miraculous was happening: In the ’90s, medical science stepped in and developed all sorts of new treatments and medicines–the so-called cocktails–and every time McKeon got close to what he was sure was his passing, he’d bounce back.
“I’d go through chemo, through changes in medication, maybe get a bad case of the flu and think, OK, this is it, but nothing,” he said.
Each time he reviewed his life insurance, will, death benefits and plans for his memorial service–each time he prepared to say goodbye to everyone he knew in this world–it would be for naught.
Everyone in his life was on the same damned roller-coaster ride: High because he was doing so well, then low–anxious, weirded out, terrified that this time was really it, this time McKeon was really going to die.
But he just kept on living.
“The new medicines are by no means a cure,” said Dr. Braden Berkey, director of counseling and psychotherapy services at Howard Brown Health Center in Chicago, one of the country’s most active agencies in dealing with AIDS since the epidemic took off in the early ’80s. “Before, people with HIV assumed death was a matter of time and they resigned themselves to it. Now, it’s still there, flashing through their heads, but it’s different, it can dissipate a little. A whole lot depends on the person.”
(A lot of younger gay men, in particular, appear to think of the new pharmaceuticals as lifesavers and worry a lot less about contracting the virus–creating a whole new challenge for AIDS educators, according to Berkey.)
“A lot of the gay men who got it before the new treatments simply aren’t ready emotionally or financially to go on living,” he said. “They had walked away from their careers, they made a whole series of decisions based on the fact they weren’t going to live. And they were absolutely sure of what was going to happen because they had seen their friends die.”
A lot of these gay men rearranged their emotional lives. Many left long-term relationships, or were left by lovers who were fearful of contracting the virus themselves or of the grave responsibility of taking care of somebody with a terminal illness.
“You think you’re going to be alone for the rest of whatever’s left of your life,” said McKeon. “You have a horrible fear of rejection. But at the same time, you don’t dare get too close. What if you give it to somebody? You think there’s no way you can’t hurt somebody.”
Still others in long-term relationships began to prepare for the end, then didn’t know what to do when the end didn’t come. If a healthy partner thinks the situation is finite and yet it continues to evolve, “you have to constantly renegotiate,” according to Berkey.
Family and friends are also yanked back and forth along with the patient’s crises and recoveries. Anxiety, Berkey says, is a hallmark of all relationships in which AIDS casts its shadow; depression is a constant for anyone with HIV, low-level like a rumor, or as loud and raucous as a waterfall.
“The truth,” Berkey said, “is that we don’t know a whole lot about living with AIDS long-term. The people who are alive now are really the first to be in that position.”
Taking more risks
Finances, too, are a huge problem for those who accepted death then went on living. In fact, in the late ’80s and early ’90s, there was a whole industry aimed at HIV-positive men based on buying life insurance. Ads appeared in almost every gay and alternative paper in the country offering big bucks fast.
“Men cashed in their life insurance and their 401(k)s, all of their retirement resources,” said Berkey. “They were running up their credit cards. They spent and gave things away to the point that there was nothing left. These were guys who were frequently used to living a certain way, and when they got sick, they decided to live even better. They weren’t worried about debt because they weren’t going to be around.”
Berkey has a patient who used to be in a very well-renumerated profession and now, broke and alone, finds himself in an assisted-living facility. “He thinks of it as a very cruel joke. He certainly wouldn’t have done what he did if he’d known he was going to live.”
Thinking he was on his way to nowhere–though by now he’d changed from a one-year to a three-year plan–McKeon, too, decided to take a few risks.
“For me, personally, it was about giving back,” he said. “I had all the usual fears–I worried I wouldn’t be able to take care of myself, worried no one would be there–but I soon figured out those were irrational fears.
“And I began to realize a lot of the things we worry about in life–`I gotta have this, if only I could do that’–these ideas we have about accumulating things and getting places, well, none of that really matters. The material things, the honors–all that really pales compared to your friends and family. I think that’s why I ended up doing some things I wouldn’t have ordinarily done.”
Like, for example, applying for a job as liaison to the gay and lesbian community for the mayor.
“There was nothing to lose!” he said, laughing. He was already involved at Bonaventure House, an AIDS hospice, and Horizons, a community center for gay, lesbian, bisexual and transgendered people.
He told Mayor Richard Daley about his HIV status during the interview. He also told him his AIDS program left a lot to be desired and that he wouldn’t be an apologist for him. To a lot of people’s surprise, Daley named him to the post in 1992.
“And, when I heard there might be a possibility to run for state representative, I told the mayor I might be interested,” he said.
Surprising most pundits again, Daley endorsed him. But one of the biggest shocks was discovering that, after a community paper blasted McKeon’s HIV status across its front page with a banner headline, it was some of this town’s best-known gay activists who pulled their support, convinced the news had doomed his campaign.
“Then one kind of salty, crusty guy–an older straight man– in my building, he came up to me and said, `I had prostate cancer 15 years ago and I’m still walking, damn it,’ and he patted me on the shoulder,” recalled McKeon.
That man inadvertently helped him get some perspective on what was happening to him. “HIV is an emotional roller coaster,” he said. “But I’m not sure, in the long run, that it’s any different from living with any other life-threatening disease, like breast cancer or diabetes.”
`A different kind of journey’
McKeon was sworn in as state representative in 1996. He has won every election since.
“Early on in my diagnosis, I read everything, went to seminars, to support groups,” he said. “I was so consumed by this thing. I’d fall back, change meds, fall back, change again. But then I realized this was an opportunity for a different kind of journey. I stopped thinking about my life in terms of a year, or three, or even five. I decided I would let this empower me to do things I wouldn’t have thought of doing before, to focus on that.
“There’s a way that this disease makes you invulnerable–I mean, what is anyone going to do to me? What could be worse?”
It’s not easy, though. There are good days and bad days. Right now, McKeon is on his third combination of inhibitors. He takes pills two or three times a day, for a total of 19.
The side effects include nausea, diarrhea and fatigue.
“You know, in the end, you’re not your disease–you’re not your cancer or your AIDS or your lymphoma,” he said. “Sure, it scares the hell out of you. But I think, in the long run, what it really does is make you brave.”
