The Price Is Right. The Young and the Restless. Phil Donahue. It’s 1985, and I am grateful for the TV in the waiting room. I’m 14, and I’m with my mom during one of her many visits to the cancer treatment center. She sits staring straight ahead at nothing in particular. A periwinkle turban covers her mostly bald head. Thick magenta marks sneak from beneath it down the back of her neck. They mark the spot, literally, of her tumor.
The memory of this particular day is painful. But the impression it has made on me goes beyond heartache and grief. It gives me a clue to the feelings and fears that influence how I treat my own disease today, almost 19 years later.
Back in the waiting room, I distracted myself by watching Bob Barker exclaim, “A brand-new car!” while my mom was in the doctor’s office getting bad news. Her treatment wasn’t working. The doctor wanted to try another approach. All my mother could say to me about that was “If this doesn’t work, I’m not going to try anything else.” I walked away for a moment to cry alone. Then, I pushed her in a wheelchair up the linoleum-tiled ramp so we could leave.
I understood little of the complexity of my mother’s cancer or its treatment. But one thing I did understand was the frequent refrain of my aunts: “The doctors really don’t know anything, do they?” Not exactly reassuring to a frightened kid, much less to my mom. Even so, I held on to the belief that medicine would save the day.
The unhappy ending to the story is that my mother died five months later, and ever since, I have struggled with a deep sense of betrayal. I’ve blamed everyone from myself to God for letting her die. I’ve blamed her for giving up. I’ve blamed her doctors, too. Why couldn’t they save her? And if they couldn’t save her then, what about me now?
Maybe my mom’s illness and death have left me more insecure and mistrusting than your average HIVer. Still, mistrust can, at its best, lead us to a healthy skepticism about how we treat our HIV. We learn for ourselves. We ask questions. We become empowered patients, and we play an important role in saving our own lives.
But we need all the help we can get. We need the expert care of doctors and, yes, the drugs. We need the support of friends, lovers and family. To deny ourselves these things because of past hurts is a mistake. I worry that it is one that I sometimes make.
My approach to treatment is different from most and, perhaps, needlessly risky. I’ve taken three treatment breaks in five years—the first one long before they were being studied. Right now, I’m experimenting with hydroxyurea and a low dose of ddI and 3TC. I am often embarrassed to talk about my treatment choices, especially with other HIVers who know more than I do and whose views are more “conventional.” They look at me like I’m crazy, and I frequently have the sensation that either I am right and everyone else is wrong, or the opposite—that I’m wrong.
But I’m convinced that there is something fundamentally flawed about the dominant approach to treating HIV. And I’m frustrated that the current standard of care—undetectable all the time—seems beyond criticism. (Never mind that it’s an unrealistic goal for many of us and that its single-minded pursuit can have dangerous consequences.) I spy groupthink—and that sets off an alarm in my head. It’s the alarm of my aunts saying, “The doctors don’t know anything, do they?”
Ultimately, I know, it’s nothing personal. The doctor sitting across from you is not a conscious conspirator in the military-industrial-pharmaceutical complex. She took an oath to “First, do no harm” and is someone you need to work with and trust.
I’m learning about all the feelings I bring to the waiting room and into the doctor’s office with me, feelings about and from the past: my insecurity and mistrust, my deep and powerful fear of dying. I spend time with painful thoughts and memories to understand them and then, hopefully, move beyond them. It’s one way of healing, perhaps the only way, that I don’t doubt.