Experiential Learner: How AIDS taught me to listen to parents in the age of COVID
“Can you absolutely, positively guarantee me that if I wear this thing my family and I won’t get the coronavirus?” The father was sitting across from me in the exam room holding up a cloth mask, his two-and-a-half year old son Jordan at his side playing with his own mask.
At this point, September 2020 and six months into the pandemic, I was frankly getting a little tired of this question. I know I may sound overly dramatic but whenever people ask me that, I feel like Humphrey Bogart in The African Queen screaming as Katharine Hepburn salts leeches off of him, knowing he’ll soon have to get back in the water and drag the damn boat further through the marsh.
I was also frankly surprised that I was even getting this question. Look, I’m a pediatrician. People love us. We’re almost always in a good mood because we take care of kids all day. So people trust us and, for the most part, we’re all on the same page when it comes to kids and health. But we all know that mask-wearing has become a thing and, sadly, like something I’ve seen before.
I began my medical career as a resident at Lenox Hill Hospital in Manhattan in the early 1980s. New York City was one of the first places where a mysterious disease that targeted gay men, among others, was becoming a terrifying reality. As a doctor who was also a gay man, I was an early convert to the need to use condoms to prevent spread of what would come to be called acquired immune deficiency syndrome or AIDS.
However, as much of the gay community finally came together to fight this disease over the coming years, it took time. I went to a lot of bars and clubs and community meetings where guys were telling me that this was a government conspiracy, a plot by pharmaceutical companies, a bio-weapon gone wrong, a method of genocide, or a hoax. It took the bitter experience of personal loss for many of us to be convinced.
By 1987, I was practicing pediatrics in East St. Louis, Illinois, and serving as the chair for the St. Clair County Task Force on AIDS. By this point, I figured, everyone must know how you got AIDS and how you didn’t.
I had heard about an eight-year-old boy in nearby Belleville, Illinois, who had contracted AIDS as a result of a blood factor transfusion for his hemophilia. He was facing a lot of opposition to returning to school from parents concerned their kids might get AIDS from him. Now this, of course, had no basis in science. I am a doctor. I do believe in science. It’s what I do and who I am.
One evening, I was invited to be on a panel at Belleville High School along with the head of the St. Clair County Health Department and the director of the East Side Health District which served East St. Louis. We sat at a long folding table on folding chairs in the gymnasium facing the bleachers. Those bleachers had been pulled all the way out and were completely packed with parents and kids. Pretty much every parent looked angry.
My fellow panelists and I went through an explanation of how AIDS is caused by the virus HIV and how that virus is transmitted only by very intimate contact like sexual intercourse or through blood. That’s it.
After we finished, we asked the audience for questions. Pretty much every hand shot up.
“What if a mosquito bites someone with AIDS and then bites you? Can they get AIDS that way?”
“Well, doctors have considered that. But when they questioned people who had contracted AIDS, they found that every one of them had engaged in one of those activities we already talked about.”
“What about if a kid drinks out of a water fountain and then my kid drinks out of that same water fountain? Can my kid get AIDS that way?”
“Well, there are a lot of things you can get from a water fountain, but AIDS is not one of them.”
“Okay, so what if that kid bites my kid? Can he get AIDS that way?”
“Good question. Whether you can get AIDS through a human bite is being investigated. But so far, no case of AIDS has been transmitted by a human bite that we’ve been able to identify. And of course, this kid is not a biter.”
“All right,” one father said as he stood up, pointing directly at me. “If my kid is in the same class as that kid, can you absolutely, positively guarantee me that my kid won’t get AIDS from him?”
I let out a deep sigh. Had these people even been listening? “Look,” I said, “there’s a huge body of evidence that shows that you cannot get AIDS from sitting at the same desk with someone, shaking hands with someone, breathing the same air as someone. However, if you are asking, can I absolutely, positively guarantee you that someone will not get AIDS in this manner, I cannot. There is no way to prove a negative.”
I was clearly exasperated, and I went on. “Still, the chance of your child getting AIDS from sitting in the same room as another kid who has AIDS is about as astronomically small as the chance of a meteorite falling out of the sky and smashing into this gymnasium in the next five seconds and killing every single one of us. THAT is how vanishingly small the chances are of something like that happening.”
Well, the town hall was pretty much over at this point, and I doubted that anyone had been convinced. As I walked slowly to my car in the crisp, spring night, I looked up at the stars. I saw Orion, my favorite constellation. I thought of how long he’d been there and how he would continue to be there long after I was gone, and I took some comfort in that constancy.
As I fumbled for my keys, I noticed people going to their vehicles. One was that father, that ‘absolutely, positively’ guy. He was walking with a woman and a couple of kids who looked to be about seven or eight years old. They stopped at a pickup truck. The guy got in on the driver’s side. The woman got in the passenger side. The kids — you guessed it — they climbed into the back of the pickup.
I listened to the fading sounds of those two kids laughing and squealing, rolling around on the bed of that pickup as they drove off into the night, and I was furious. “You idiot!” I thought. “You’re wondering if your kid can get AIDS by being in the same classroom with another kid, and you’re driving in the dark with your kids in the back of a pickup truck? Are you crazy!?” I hoped these kids wouldn’t end up in the ER where I worked, hurt or maimed or killed, something much more likely to happen than catching HIV in 10,000 years of sitting in a classroom next to some kid with AIDS.
But as I sat in my car, I heard my mom’s voice, as I tend to at times like this. “Kenny, now put yourself in that man’s shoes.”
“I’ve driven this road a thousand times with those kids in the back,” I imagined this father thinking. “We’ve never had a problem before. But that other kid, he’s going to die. I feel really bad about that. And I love my kids. And if they get sick and I could have stopped it, I would never forgive myself.”
As I drove home, I felt something small shift inside. I could still see Orion. Constant as he is, though, I also knew that his stars were slowly drifting into other configurations.
That night in 1987, I gave that frightened father statistics rather than compassion, snark rather than empathy. I failed. And 33 years later, I was facing another father who was asking the same question.
“How are you doing with all this?” I asked Jordan’s father, pointing to the mask in his hand.
“I haven’t worked in four months,” he said, looking at the floor. “His mom’s still working so we’re kind of scraping by but, you know…”
“I’m really sorry to hear that. I can’t imagine how stressful that must be for you.”
“Yeah,” he said, looking up at me, “it really is.”
“Look,” I said, pointing to the mask on my face, “I hate this thing. I find it hard to smile. It makes it hard to talk clearly, and I have to smell whatever I had for lunch for the rest of the day. You know, right now I can’t guarantee you anything. I do know that I’m scared. I’m 66. My blood pressure’s a little high, and I weigh more than I wish I did.
“What I’m really scared of, though, is that I could pass this on to someone and make them sick, someone I love or someone I take care of, like your son. I know you love him. He’s a great kid, and you’re a great dad. I know that you would do anything for him, and right now, this is the best we’ve got to try to protect him.”
He took a deep breath. “Okay.”
And like Bogart, once again descending into the marsh, this father put on his mask. Jordan looked up at him, laughed and he put on his own Spiderman mask. His dad looked back at him, and despite the masks, I could see that both of them were smiling.
In February, they came back for Jordan’s three-year checkup. This time, dad was wearing a St. Louis Blues mask and his son a Batman mask. He told me that that he had gotten some work, not quite what he wanted, but work, and he was grateful for it. He was also grateful that after everything he was reading and seeing on TV, he was mostly able to work from home.
I thought back to my time in New York nearly 40 years ago at the beginning of another pandemic and of all the men I knew and loved who were no longer with us. I thought of that eight‑year‑old boy who wanted to go to school and was eventually able to, until he got too sick to continue.
And I thought of another family driving off into the night in a pickup truck and, based on no evidence at all, I was absolutely, positively sure that they had made it home safe.