Editor’s Note: Each Thursday, we feature a throwback piece from Topology’s predecessor, catapult magazine. This essay, published in 2011, has always stuck with me. We did not often publish pieces with the author’s name withheld, but in this case, the anonymity of the author is part of the story, as a parent discerns how to protect her daughter from a stigmatizing medical diagnosis as long as she possibly can. How would your communities respond to the presence of a child with HIV?From the outside, we appear to be a fairly typical family. My daughter takes ballet and swimming lessons. She’s a Girl Scout and goes to Sunday School. I can be counted on for donating cupcakes and school supplies. I show up for work days. I lead the Girl Scout troop. I vote, floss, and recycle. She’s adorable. I’m reliable. We’re pretty typical.
What you don’t know from looking at us is this: I’m a liar. It’s true. I’m a liar. So far this year, I’ve lied to the school district, ballet studio, Sunday School, after-school program, three of my daughter’s friends, and the PTA. They are legal lies, but lies all the same. Given what little you know of me—my own squeaky-clean self-description—you may imagine that lying does not come easily for me. It doesn’t. But I do it.
My daughter has HIV. That is truth, not a lie. In these first few months of school, it seems that each and every organization and institution with whom we interact wants my daughter’s health information. And on every form, after I’ve dutifully noted the immunization records and hay fever, there is the question: please note any medications taken on a regular basis. I leave it blank, a lie of omission. Then there’s the other question: Does this child have any known chronic illnesses? I write no, a lie of commission.
My reasoning is, I’m told, sound. First, by law, we don’t have to disclose. Second, we have already had trouble in circumstances when I have disclosed. Third, other than medication interactions, so long as people are using universal precautions—as they all say they do—nobody else needs to know. (I did eventually tell the school nurse and the first-aider at the after-school program about the medications). Fourth, you can’t un-ring a bell. That’s the biggest reason. For persons living with HIV or AIDS, the decisions about whom to tell and when are huge. And I’ve decided not to make those decisions for my daughter. My gut would prefer to just trust and tell, but that ballet teacher may have a son or daughter in my child’s class, and when my beautiful girl is fourteen, this information may come back in a way that would hurt her. I can’t make that choice for her. There are certainly strong arguments toward openness being a way of de-stigmatizing the disease and educating others, and I agree with that. But I can’t let my child be an object lesson before she’s old enough to decide that for herself.
We don’t live in total isolation. My friends and our family know. We spend time at a camp that serves kids with her diagnosis. We see other kids at her clinic. But we are careful. I am careful. I try my best not to ring any bells that she might want to un-ring, which involves a lot of lying and maneuvering. I just happen to work from “home” outside her ballet classes. We just happen to be busy every time we’re asked to a playdate that coincides with medication times. When we run into classmates on the sidewalk outside of her clinic, we sidestep the question of what we’re doing in that neighborhood, so far from our home.
When I began the process of adopting her, I’m sure I looked like a rock-star candidate to the agency. I have been entrenched in HIV/AIDS ministries and social justice organizations for years. I had contacts in organizations and camps and medical clinics. “I know what I’m getting into,” I blithely told the social worker. She agreed. “You are incredibly well prepared for this aspect of your child’s life.”
Not so much.
I knew a lot about organizations and medications, but I knew nothing about isolation. I knew nothing about how difficult it is to make these hundreds of little decisions about whom to tell and how to tell and what to tell and when. I knew nothing of what it was to feel like an outsider in a place where you’ve lived for a decade. I knew nothing of a thousand little barbs that stick in your craw—little things that you don’t realize until you’re in it. I had no idea that even challenging rude comments or inaccurate statements—something I did regularly before I adopted my daughter—would feel different. It does. I sometimes hesitate to speak the truth on this topic—afraid it would label my daughter. Who am I kidding? She doesn’t look sick. Nobody suspects. When I went on a tour of a potential pre-school, I asked about first aid and universal precautions. The director told me about this special disinfectant spray she had purchased that would kill the AIDS virus on contact (don’t get me started). “I promise you,” she said, wielding that spray bottle, “your child will not get AIDS at our school.” Indeed.
When she is old enough to understand her diagnosis, what it does and does not mean, and what telling others does or does not mean, then all of these decisions will be hers. I will walk her through them, of course. But the choices are hers, because the impact is on her. Whichever option she chooses, however—full disclosure, partial disclosure, or privacy—will likely result in some form of isolation. There will be some ways, large and small, in which being a person living with this virus and all of the attendant prejudices and presumptions will keep her just slightly off the normal path.
I’m okay with that.
At some level, I think she knows that there’s something different about her, about our family. This kid, she’s amazing. She gravitates to the outsides of the circles, befriending the other kids who don’t quite fit in for whatever reason. She marches to her own little drummer, mixing doctor and princess costumes, and wearing them boldly to the supermarket—and the clinic.
She came home from Sunday school a few weeks ago, talking about Jesus healing the sick. “Some people are sick and they need to get healed,” she said. “So Jesus and the doctors fix them, but some people are just a little sick and their blood needs medicine—like me. They don’t need to be healed, because it’s just medicine. They just need Jesus to be their friend—and maybe a few other kids, too. Like me, mommy, like me.”
She kicks her mary-janes against the rung of the chair and smiles at me, a milk mustache dotting her face. I don’t know what to say and smile back. After dinner and medicine, we’re going outside to practice riding her bike, like the typical family that we are. She climbs on that little pink bike and takes off, training wheels clickety-clacking on the sidewalk, pink jacket puffed and billowing.
“Watch me! Watch me! Watch me!” she cries.
Always, my baby, always.