When I first met Mike, the man who would become my stepfather, he had a foster daughter named Diane. As a teenager, she was too much for her parents to handle so Mike, who had a way with wild things, took her in. She left the farm about the time I arrived, taking Moses, her Neapolitan mastiff, with her. And some time after that, she got a second dog, a young Irish wolfhound she named Jason.
One evening, Diane showed up unexpectedly at the door of the farmhouse. She was crying and panicky. The night before, her mastiff had suddenly started bleeding from his rectum and died. She found a note that read, “We got your dog. Tonight we’re coming back for the other one.”
“They must have fed him ground glass,” said Diane. She was certain that whoever killed Moses planned to do something similar to Jason, the wolfhound puppy. She told us she had been living with a member of the Hells Angels Motorcycle Club and had left her “old man” without his blessing. Knowing a little about Dianne’s past, I wondered if there was more to the story, but clearly Diane had pissed off some badass biker and was afraid for herself as well as for Jason.
We sat around the table—my mother, Mike, Diane and I—and discussed options. One possibility was for someone to go home with Diane and stay up all night to keep watch—and to fight off the Hells Angels if they showed up.
I volunteered, even though I was only sixteen, was about five foot three, weighed at most 115 pounds, and had never been up all night. Nor, for that matter, had I ever been in a gunfight or serious fight of any kind. Plus, I had been born with a genetic defect that means I don’t take particularly well to gunshot wounds. I have hemophilia, a bleeding disorder, and I had gotten to that point in my life only by ignoring limitations. I had always insisted I could do anything, no matter what anyone else might say. When my parents told me I couldn’t have a bike without training wheels, for example, I borrowed a teenage neighbor’s six-speed and taught myself to ride even though I couldn’t reach the seat.
So while Mike, Diane, and my mother continued talking (on the surface at least, they appeared to giving the option of sending me serious consideration) I went into the master bedroom, unlocked the gun cabinet, and started arming myself. As a novice, I had no idea what kind of weapons I would need. Would I be shooting to warn, to wound, or to kill? Would the fighting be close in, or would I need a weapon with range? Would there be one biker or many? Since I had no answers, I prepared for any possibility.
I strapped on two shoulder holsters. Under the left arm, I shoved Mike’s untraceable Colt .45, and under the right a nine-millimeter Browning. I also belted a tiny .25 caliber automatic to one leg. I chose an over-under as my main gun. The top barrel fired a .22 longshot rifle round and the bottom fired a .410 shotgun shell. My hope was that I would not need anything too lethal. Still, I thought, I might require something more, just in case things got nasty. Just in case I needed to kill someone.
I was trying to decide between the Winchester Model 12 shotgun and the Weatherby big game rifle when my mother came in.
“We have decided to send Huxley instead,” she said, referring to one of Mike’s dogs, an English mastiff that weighed more than two hundred pounds. “He is trained to never take food from strangers.” She also pointed out that I had a math test the next day. “You need to study,” she said, as if this was the deciding factor.
I started unloading the weapons and stripping off the shoulder holsters. I was relieved and disappointed. If I had gone off to fight the Hells Angels, I might have gotten out of my test.
I told this story to someone once who responded, “It is a story about something that didn’t happen.” And to an extent that’s true. I didn’t end up in a gun battle. But it is also a story about something that did happen. It is one of those “what the hell were the parents thinking?” stories, but it is also a story about a sixteen-year-old thinking it was appropriate to arm for battle like that.
To understand why, I have to tell another story, one about my time in the basement.
In the summer before sixth grade, my family moved into a house with a partially finished basement. I spent a lot of time those days with swollen ankles, kind of like very bad sprains, but for me they seemed to happen spontaneously. When the pain got so bad I couldn’t sleep, I would spend my nights down there watching television. We didn’t have 24/7 television in those days, and when the last station went off the air, usually around midnight, there would be a brief image of a waiving flag and the playing of the national anthem, and then nothing but a cross-like test pattern, and a steady tone. Staring at that pattern and listening to that tone for hours on end, I would swear to god, any god, that I would believe, I would pray, I would serve, if only he—or she—would take the pain away. It never worked; I never did find religion.
Many nights, I didn’t fall asleep until sunrise. I asked myself a lot of questions during those long vigils. By this time, I had stopped asking, pointlessly, “Why me?” Instead, I played out scenarios in my head. In one, I was in a life raft with several other people, but the raft would not stay afloat with all of us in and there wasn’t enough food and water to go around. Someone would have to go overboard into the frigid sea where the sharks were circling. I asked myself if I could be the one to jump, whether I would have the strength. Yes, is the answer that came back to me over and over. Yes.
I asked other, similar questions. For example, could I jump off a cliff if it would save lives? The answer was always yes. Meanwhile, my family slept soundly upstairs because I had taken it on myself to jump into the basement, where sharks shredded my ankles and I refused to cry out because I might wake them, adding to their burden.
Amid all these questions about sharks and cliffs, there was one question I never asked: Are these the kinds of questions a ten-year-old should be dealing with? But they were exactly the questions a boy might ask if he was ashamed and needed to justify being here.
You see, I didn’t feel I deserved to stay in the life boat, not unless there was room for everyone else. After all, I was defective. I had been born broken. How could I supplant someone who had a full life to look forward to, someone whole and normal? The best possible resolution to my situation, it seemed, would be to die a noble death. I didn’t think about suicide, that would have seemed cowardly and pointless, but I did think about making the ultimate sacrifice. It would offer redemption, wash away my shame, validate my existence.
These scenarios, these questions, were my own kind of test pattern, my own calibration.
That night when Dianne came over to tell us Moses was dead and asked for our help, I had been briefly offered the possibility of actually living out the kind of scenario I obsessed over all those nights in the basement—the possibility of dying in a hail of bullets to protect a woman and her puppy.
.
Tag Archives: hemophilia
A Great Disturbance in the Force
NOTE: I first performed this piece on Feb. 6, 2013 at Fireside Storytelling in San Francisco. The theme was “Bad Medicine.”
One morning many years ago, I was standing over the sink, getting water for my coffee, and I was overcome by the sudden bout of sobbing—that shoulders-heaving, unable-to-fill-my-lungs, abdominal-muscles-cramping, random-guttural-sounds-escaping-from-my-throat kind of sobbing. As my tears splattered in the stainless steel sink, I tried to figure out where this was coming from. My wife and I had been having a hard time and work was stressful, but nothing I could think of explained this. I finally composed myself, set up the coffeemaker, and went out on the porch to get the newspaper.
A neighbor was walking by and said, “Have you heard?”
“Heard what?”
“Turn on the TV.”
And I did. Just in time to see the second plane strike the second tower.
This will sound fantastic to many of you, delusional, grandiose. This is the stuff of movies. How does it go? “I felt a great disturbance in the Force, as if millions of voices suddenly cried out in terror and were suddenly silenced. I fear something terrible has happened.”
Perhaps a few of you will take it at face value because you know from your own experience that one reality just isn’t enough. (You know who you are, don’t you?) For the rest of you, all I can ask is that you suspend disbelief and trust me when I say that these things are not uncommon in my world.
When I finally pulled myself away from the TV, I remembered the last time I had cried like that. It was May 8, 1996, the night I drove home from the Business Resource Center and Sertoma Bingo Hall in Chehalis, Washington. That was the night I understood the scope of another tragedy, one whose death toll was twice that of the World Trade Center attacks.
Those of you who have heard my stories know that I have hemophilia, a bleeding disorder, and I also have HIV. I contracted it from the medicine I stick in my arm. Like a diabetic injects insulin, I inject something called Factor VIII, and in those days my medicine was made from human blood.
The virus nearly wiped out the hemophiliacs of my generation. Only about five percent escaped infection, and those were probably exposed but were immune because of a genetic defect that occurs in about five percent of the population.
During the 1980s and early 1990s, I buried a lot of friends, some gay friends (I lived in the Castro at the time), a couple IV drug users, and a lot of friends with hemophilia. At the time, the “hemophilia holocaust” as it was called by people prone to hyperbole, was widely considered to have been unavoidable. People figured we needed our meds to survive, and it took the manufacturers time to figure out what was happening and to find a way to produce clean medicine. But then there were the crazies.
I went to the Business Resource Center and Sertoma Bingo Hall to see my friend Cory. We met when we shared a hospital room, and had a lot in common. We were both investigative journalists and shared similar political viewpoints. He was a news director at Pacifica Radio and I was a news editor at the San Francisco Bay Guardian. But Corey was one of the angry ones, the ones looking to assign blame. I was too Zen to get caught up in that, but Centralia was near my home and I wanted to say hi.
Corey was there to promote the work of a group he cofounded call the Committee of Ten Thousand. If you took the 7,000 or so infected hemophiliacs in the country and added in sexual partners and infant children, that’s the number you came up with. Unfortunately, to see Corey, I had to sit through the paranoia. I should have known better. Corey is a very good investigator and by the time I left I was a conspiracy theorist, too.
If you want the full details, you can read Randy Shilts book “And the Band Played On.” The last time I saw Randy, he looked at me and said, “You’ve put on a lot of weight.” I forgave him because he did a great job explaining what happened and it was true, I had put on a few pounds. The people with AIDS were so thin. It felt protective.
Here’s the thumbnail version: During the sixties, the drug companies refused to adopt technology that would kill viruses in our medicines. We all got hepatitis C in the seventies. The companies wanted blood from people exposed to hepatitis B to make the gamma globulin serum given to travelers, so they collected blood from skid rows, prisons, border towns, and neighborhoods like Christopher Street and the Castro. They weren’t supposed to use the hepatitis-infected blood to make our medicine. But they did. They would mix something like 20,000 pints together in a huge vat, pretty much guaranteeing that each batch was contaminated. When they found out HIV and Hep C are transmitted the same way, they didn’t act. When the CDC reported the extent of hemophiliac infections, they got their tame watchdog, the FDA, to tell the CDC it was full of it. And when they couldn’t deny that their medicine was tainted and finally figured out how to purify it, they sold the remaining contaminated doses overseas.
Each individual decision could be rationalized, but start stringing them together and the most generous thing you could say is that it was an extreme example of cognitive dissonance—people who wanted to make money were able to convince themselves that their choices were defensible. But when I looked at the entire pattern of events, I could only reach one conclusion: The drug companies were willing to watch people die as long as they made their money.
Interstate 5 north of Chehalis is pretty much a straight shot and the northbound lanes were empty at ten o’clock that night. Looking back, I am grateful for both those things, because instead of steering, I was pounding both fists on the top of the wheel. Fortunately, I was also blessed with dry weather. I could barely see the road through an outpouring of tears—rain would have made things that much worse. At one point, driving seventy miles an hour, I lowered my head against the steering wheel for several seconds, closed my eyes, and sobbed. I should have pulled over, or at least slowed down, but in that moment that I didn’t really care whether I died.
At one point, I rolled down the window to let the cold air dry my tears and yelled to the empty highway. “They tried to kill me. The fucking bastards tried to kill me. They did kill me; I’m just not dead yet. They murdered me for money. They decided that my life didn’t matter. They decided I didn’t matter. Fucking assholes. Fucking, fucking, FUCKING assholes.” I was still crying when I walked through my front door forty minutes later.
Over the next few years, I collected stories. About the people infected needlessly well after the insiders knew what was happening. About the daughter that school officials didn’t want in class. About the sick and disabled man who came to San Francisco to protest outside the law firm that was defending the manufacturers against a class action lawsuit. The lead attorney had once said the best strategy was to “wait us out.” The man tried to talk to the lead attorney as he was heading toward his car, and the attorney turned and snarled, “Get a job.” Eventually, I had to conclude this wasn’t about cognitive dissonance, it was about greed. It was about immorality.
I don’t know exactly what happened to me on the morning of September 11. Perhaps I was aware of 3,000 lives being extinguished, or maybe I was just picking up on the vibes of my anguished neighbors. But perhaps what set me off was an allergic reaction to the evilness of it all.
I can’t speak for Obi-Wan Kenobi, but is it possible the disturbance in the Force wasn’t about the extinguishing of souls but about the full exercise of unmitigated evil? Isn’t that what Darth Vader represents in the early Star Wars episodes, and what the Sith lords represent throughout?
When I was crying, driving blind, on my way home from Chehalis, I had already buried my friends. I had already mourned my own death. That wasn’t the source of my pain. What set me off wasn’t grief, it was the sure and certain knowledge that here, now, on this very planet, the Sith lords walk among us..
One morning many years ago, I was standing over the sink, getting water for my coffee, and I was overcome by the sudden bout of sobbing—that shoulders-heaving, unable-to-fill-my-lungs, abdominal-muscles-cramping, random-guttural-sounds-escaping-from-my-throat kind of sobbing. As my tears splattered in the stainless steel sink, I tried to figure out where this was coming from. My wife and I had been having a hard time and work was stressful, but nothing I could think of explained this. I finally composed myself, set up the coffeemaker, and went out on the porch to get the newspaper.
A neighbor was walking by and said, “Have you heard?”
“Heard what?”
“Turn on the TV.”
And I did. Just in time to see the second plane strike the second tower.
This will sound fantastic to many of you, delusional, grandiose. This is the stuff of movies. How does it go? “I felt a great disturbance in the Force, as if millions of voices suddenly cried out in terror and were suddenly silenced. I fear something terrible has happened.”
Perhaps a few of you will take it at face value because you know from your own experience that one reality just isn’t enough. (You know who you are, don’t you?) For the rest of you, all I can ask is that you suspend disbelief and trust me when I say that these things are not uncommon in my world.
When I finally pulled myself away from the TV, I remembered the last time I had cried like that. It was May 8, 1996, the night I drove home from the Business Resource Center and Sertoma Bingo Hall in Chehalis, Washington. That was the night I understood the scope of another tragedy, one whose death toll was twice that of the World Trade Center attacks.
Those of you who have heard my stories know that I have hemophilia, a bleeding disorder, and I also have HIV. I contracted it from the medicine I stick in my arm. Like a diabetic injects insulin, I inject something called Factor VIII, and in those days my medicine was made from human blood.
The virus nearly wiped out the hemophiliacs of my generation. Only about five percent escaped infection, and those were probably exposed but were immune because of a genetic defect that occurs in about five percent of the population.
During the 1980s and early 1990s, I buried a lot of friends, some gay friends (I lived in the Castro at the time), a couple IV drug users, and a lot of friends with hemophilia. At the time, the “hemophilia holocaust” as it was called by people prone to hyperbole, was widely considered to have been unavoidable. People figured we needed our meds to survive, and it took the manufacturers time to figure out what was happening and to find a way to produce clean medicine. But then there were the crazies.
I went to the Business Resource Center and Sertoma Bingo Hall to see my friend Cory. We met when we shared a hospital room, and had a lot in common. We were both investigative journalists and shared similar political viewpoints. He was a news director at Pacifica Radio and I was a news editor at the San Francisco Bay Guardian. But Corey was one of the angry ones, the ones looking to assign blame. I was too Zen to get caught up in that, but Centralia was near my home and I wanted to say hi.
Corey was there to promote the work of a group he cofounded call the Committee of Ten Thousand. If you took the 7,000 or so infected hemophiliacs in the country and added in sexual partners and infant children, that’s the number you came up with. Unfortunately, to see Corey, I had to sit through the paranoia. I should have known better. Corey is a very good investigator and by the time I left I was a conspiracy theorist, too.
If you want the full details, you can read Randy Shilts book “And the Band Played On.” The last time I saw Randy, he looked at me and said, “You’ve put on a lot of weight.” I forgave him because he did a great job explaining what happened and it was true, I had put on a few pounds. The people with AIDS were so thin. It felt protective.
Here’s the thumbnail version: During the sixties, the drug companies refused to adopt technology that would kill viruses in our medicines. We all got hepatitis C in the seventies. The companies wanted blood from people exposed to hepatitis B to make the gamma globulin serum given to travelers, so they collected blood from skid rows, prisons, border towns, and neighborhoods like Christopher Street and the Castro. They weren’t supposed to use the hepatitis-infected blood to make our medicine. But they did. They would mix something like 20,000 pints together in a huge vat, pretty much guaranteeing that each batch was contaminated. When they found out HIV and Hep C are transmitted the same way, they didn’t act. When the CDC reported the extent of hemophiliac infections, they got their tame watchdog, the FDA, to tell the CDC it was full of it. And when they couldn’t deny that their medicine was tainted and finally figured out how to purify it, they sold the remaining contaminated doses overseas.
Each individual decision could be rationalized, but start stringing them together and the most generous thing you could say is that it was an extreme example of cognitive dissonance—people who wanted to make money were able to convince themselves that their choices were defensible. But when I looked at the entire pattern of events, I could only reach one conclusion: The drug companies were willing to watch people die as long as they made their money.
Interstate 5 north of Chehalis is pretty much a straight shot and the northbound lanes were empty at ten o’clock that night. Looking back, I am grateful for both those things, because instead of steering, I was pounding both fists on the top of the wheel. Fortunately, I was also blessed with dry weather. I could barely see the road through an outpouring of tears—rain would have made things that much worse. At one point, driving seventy miles an hour, I lowered my head against the steering wheel for several seconds, closed my eyes, and sobbed. I should have pulled over, or at least slowed down, but in that moment that I didn’t really care whether I died.
At one point, I rolled down the window to let the cold air dry my tears and yelled to the empty highway. “They tried to kill me. The fucking bastards tried to kill me. They did kill me; I’m just not dead yet. They murdered me for money. They decided that my life didn’t matter. They decided I didn’t matter. Fucking assholes. Fucking, fucking, FUCKING assholes.” I was still crying when I walked through my front door forty minutes later.
Over the next few years, I collected stories. About the people infected needlessly well after the insiders knew what was happening. About the daughter that school officials didn’t want in class. About the sick and disabled man who came to San Francisco to protest outside the law firm that was defending the manufacturers against a class action lawsuit. The lead attorney had once said the best strategy was to “wait us out.” The man tried to talk to the lead attorney as he was heading toward his car, and the attorney turned and snarled, “Get a job.” Eventually, I had to conclude this wasn’t about cognitive dissonance, it was about greed. It was about immorality.
I don’t know exactly what happened to me on the morning of September 11. Perhaps I was aware of 3,000 lives being extinguished, or maybe I was just picking up on the vibes of my anguished neighbors. But perhaps what set me off was an allergic reaction to the evilness of it all.
I can’t speak for Obi-Wan Kenobi, but is it possible the disturbance in the Force wasn’t about the extinguishing of souls but about the full exercise of unmitigated evil? Isn’t that what Darth Vader represents in the early Star Wars episodes, and what the Sith lords represent throughout?
When I was crying, driving blind, on my way home from Chehalis, I had already buried my friends. I had already mourned my own death. That wasn’t the source of my pain. What set me off wasn’t grief, it was the sure and certain knowledge that here, now, on this very planet, the Sith lords walk among us..
Passing on Curves
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..
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..