NOTE: I first performed this piece at Fireside Storytelling in San Francisco in December 2012.
When I am in the woods for more than a day or two, everything slows down. I stop talking, I enter a trancelike state. My friends once made the mistake of letting me drive home like that. I was on a narrow, winding highway, a cliff face on one side and a steep drop on the other, making good time despite heavy truck traffic, when my girlfriend looked over and said, placidly, “I trust you. I know you know what’s around the bend. But some of us might be more comfortable if you didn’t pass on curves.”
This is a story about passing on curves.
When I was born, my life expectancy was twelve. I almost died on my second day. As a child with hemophilia, I was told constantly about what I couldn’t do. I learned to ignore limitations. I learned to trust my instincts. Curves, road signs, trucks, double yellow lines…mean nothing to me.
So when I was diagnosed with HIV in 1985, I just kept driving. I went to graduate school, launched a new career, got married … and I had a child.
My daughter was conceived in the back seat of a car. Unfortunately, I was in the front seat at the time. While I watched for passersby, my wife, Karen, performed highly unerotic acts involving a syringe and a Gerber’s baby food jar containing donated sperm.
Karen was convinced she was carrying a boy, so we had not decided on a girl’s name, though we had considered naming the kid after Karen’s grandmother. When my daughter was born blue with her umbilical cord wrapped twice around her neck, when the midwife looked up from between my wife’s legs and said, “she’s floppy,” I used the only girl’s name I had, the grandmother’s name, to call my daughter back into this world, and since she answered, she became, irrevocably, Manya.
We had a plan, my wife and I. I would hold on until Manya was in kindergarten, making it easier for Karen to work and not have to cover huge daycare costs. And then I would die. It was a good plan.
Obviously, though, I knew nothing about parenting. A few weeks after the birth, I was sitting in a friend’s kitchen, staring out the window, when it hit me—it’s not about me anymore. The foundations of my life were suddenly swept away, and yet I found myself more firmly planted on the ground.
Manya had a hard time falling asleep. She had too many questions. She was maybe two when she called me into her room during naptime. Standing up in her crib, she pointed toward the window. “What dat?” she demanded. “The window?” “No, what dat?” “The curtains?’’ “No, what dat?” I look out the window. “The tree?” “Not dat,” she says, pointing at the window, “and not dat,” pointing now at the crib. “What dat?” pointing somewhere in between. And then I got it. She wanted to know about negative space. “That,” I said, smiling at her, “is air.”
Next she wanted to know, “Daddy, who were the first mommy and daddy’s mommy and daddy.” Think about it.
When she was three, she asked, “Daddy, why are we here?” None of my answers fully satisfied her, but I told her what she was experiencing was called existential angst. Now, she could name her anxiety. “Daddy, I have existential angst.”
The more I understood what it meant to be a father, the more I understand my hubris. This kid loved me in a way I had never been loved before, and that was mind-blowing enough, but she also needed me, trusted me. She wanted to shake the world like a snow globe so she could watch all that knowledge fall down from the sky and settle at her feet. And she counted on me to be there, to be both her sidekick and her superhero. But I was going to leave her. For the first time in my life, it seemed, I hadn’t known what was around the bend.
She called me in one night to ask, “Daddy, is Elmo a good monster or a bad monster?” Finally, a question I could answer. “Elmo is a good monster.” I turned to leave. “Daddy, will you keep me safe from the bad monsters?” I turned back and said, “Of course I will.” How could I say anything else? But it was a lie. The monster was already in the house…I had brought it in.
The lie hit me so hard that I began to have regrets about my choice to parent. But those regrets caused a great deal of dissonance. How could I regret the decision that produced my wonderful child?
In 1996, I was giving talks about AIDS to high school classes. In one, a girl asked, “How will you tell your daughter? I am wondering because my father died when I was five.” I didn’t know the answer. So I asked if she had any advice. “Pictures,” she said achingly. “Take lots of pictures.”
I came home after one such talk and read in the paper about success treating HIV with a new drug, Crixivan, the first protease inhibitor. I put my head down on the table and sobbed. “I might live. I might live. I might live.”
I began to believe I could get away with it one more time, this passing on curves. But I hadn’t yet spotted the other truck, the one coming from Karen’s direction.
It first manifested as a scattering of spots on a mammogram. Microcalcifications. Ductal carcinoma in situ. We decided on aggressive treatment. After the mastectomy, the pathology report contained good news. No signs of malignancy, clean margins. Less than two years later, though, a lump appeared under Karen’s arm. Breast cancer survival rates are associated with the number of positive nodes, and in those days they considered more than ten a dire sign. After three months of chemo, Karen had surgery to remove her nodes. She had more than 50 positive nodes.
I asked a doctor friend what she would say if discussing Karen’s case privately with another doctor. She consulted colleagues and then got back to me: two years to recurrence, another two to death. At the same time, information was coming out about the HIV virus developing resistance to the new drugs.
Suddenly, Manya had two parents with fatal illnesses. All three of us were in the same car, rushing headlong into an oncoming truck. How could I have been so arrogant? Surely it had been only a matter of time before passing on curves would catch up with me. And that day was nearly here. I couldn’t imagine a world without Manya, and yet I felt like I had been cruel to bring her into such a situation.
But all I could do was drive Karen to radiation treatments and Manya to birthday parties and soccer games, and try to impart, psychically, energetically, what I know about passing on curves. Maybe they could succeed where I had failed.
At this point, I have to confess something — I am still alive. A couple months ago, I drove down to visit Manya at college. She told me all she was up to. She is the founder and president of a new campus organization that raises money for Third World poverty relief projects. Then there are her regular academic classes, evening Swahili classes, ballet, voice, and yoga. And she had just revised her resume to try to get a summer internship in Africa. I worried about her overdoing it, but so far, she seemed to be holding it together.
Two days later, she texted her mom and me (we are no longer together; and yes, her mom survived, too) to say she had accepted a part in a school play. Her mother couldn’t answer. Her overbooked, overwhelmed daughter was taking on yet one more thing. But I just texted back, “Congratulations.” You see, my daughter, like her father, and in some ways her cancer-survivor mother, doesn’t pay enough attention to limitations. She passes on curves.
All I can do is warn her to slow down and point out the hazard signs. And if she drives over the cliff, I will be there to pick her up, clean her off and put her back on the road. Because that is what a parent does.
Passing on curves is part of who she is. After all, she thrived in a family where both parents expected to die before she left for college. Which begs the question: Which of us was behind the wheel?
And who am I to judge when it comes to passing on curves? I have come to terms with it in myself. It is what I do. It is what I have always done. It is who I am..
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