This week we present two stories from people who felt shamed by a diagnosis.
Part 1: Jamie Brickhouse's HIV-positive status becomes a point of tension at the dentist's office.
Called “a natural raconteur” by the Washington Post, Jamie Brickhouse is the New York Times published author of Dangerous When Wet: A Memoir of Booze, Sex, and My Mother, and he’s appeared on PBS-TV’s Stories from the Stage, The Moth Podcast, Risk! Podcast, Story Collider Podcast, and recorded voice-overs for the legendary cartoon Beavis and Butthead. He is a four-time Moth StorySLAM champion, National Storytelling Network Grand Slam winner, and Literary Death Match champ. Jamie tours two award-winning solo shows, Dangerous When Wet, based on his critically-acclaimed memoir, and I Favor My Daddy, based on his forthcoming memoir. A fixture on the New York storytelling circuit, he has appeared on stages across the country and in Mexico and Canada. Jamie’s personal essays have been published in the New York Times, International Herald Tribune, Washington Post, Daily Beast, Salon, Out, Huffington Post, and POZ. Friend him on Facebook, follow him on Instagram, Twitter and YouTube @jamiebrickhouse, and visit www.jamiebrickhouse.com.
Part 2: Diagnosed with autism spectrum disorder as a child, Anders Lee struggles with this identity as an adult preparing to donate sperm.
Anders Lee is a DC based comedian and writer featured on TV's Redacted Tonight and the podcast Pod Damn America.
Episode Transcript
Part 1: Jamie Brickhouse
I like to think of myself as Jesus Christ, not when I’m wearing a loincloth but that whole turn‑the‑other-cheek thing. I hate confrontation.
Example, I am at a new dentist for the first time. My old dentist stopped taking my insurance so my partner, Michael, said, “Well, why don’t you go to my guy, Dr. Flowers. I've been seeing him for years. He takes our insurance.”
I’m like, “Okay.”
So I’m at the first appointment. Now, call me crazy but I've always liked going to the dentist. I know, but I've got good teeth, so I think that has something to do with it. I just like lying back and relaxing and having things put in my mouth.
So I’m there and I am already situated in that weird, undulating dental examination chair. I’m lying back and I've got my paper bib chained around my neck. I’m staring up at the ceiling at the cool, white fluorescent lights and all I can hear is ‘phft-phft-phft-phft’, which is the sound of the dental hygienist, Lisa, flipping through my medical intake forms that I had just filled out.
Then the ‘phft-phft-phft’ stops. I turn and I see Lisa, and she cuts a nice figure in her dental whites. She's facing away from me the wall and I see that her back is kind of tensed up. And then she says, “You're HIV positive?”
And she says it in the way that you might ask, “You’re a convicted felon?”
Jamie Brickhouse shares his story with the Story Collider audience at Union Hall in Brooklyn, NY in February 2020. Photo by Zhen Qin.
The comedian in me wanted to say, “No, I’m just kidding. That’s the kind of thing I joke about all the time.” What I really wanted to say was, “Yeah, lady. You got a problem with that?”
But I didn’t say either of those things. I just let the silence linger between us for a few seconds and then I answered simply, “Yes.”
And she said, “Oh.” She turned around and she kind of gathered herself and she put on those latex gloves and she cleaned my teeth.
So that evening Michael said, “Oh, how did it go with Dr. Flowers?”
And I said, “Well, Dr. Flowers was fine.” He was a nice avuncular guy. He came in and played with my jaw and said everything was okay. And I said, “But Lisa…”
And he said, “Oh, I never liked her.”
I said, “Well, let me tell you…” and I told him what happened.
Of course he was icked out by it too but we thought, you know, it’s kind of weird but what can you do? She didn’t refuse to clean my teeth. Then we didn’t think about it again. It just left our minds. Until three months later.
Michael goes in to have his routine cleaning and when he's done he calls me. As soon as I answer he says, “We need to find a new dentist.” And immediately I thought, “Lisa.”
I said. “What happened?”
So he says that when he got there and he sat down in that examination chair, that weird, undulating thing, she turned to him and she said, “So, I met your partner or husband, which is it?”
And he said, “Jamie, my partner.”
She said, “Yeah. He tells me he's HIV positive. Are you?”
And Michael just answered, he hates confrontation more than I do, and he says, “No, I’m not.”
And then she shoves some blank medical intake forms under his nose and says, “It’s been five years since you filled these out so we need to get an update on you. And have you had Hepatitis C? Because that can be worse than HIV.”
Then she says, “I just ask these questions because I need to protect myself,” and then she puts on two pairs of latex gloves, a surgical mask over her mouth, and then she puts on one of those giant welder helmets.
And in this beekeeper’s getup, that’s how she proceeds to clean his teeth, all the while pulling down the sleeves of her jacket so that they match up with the latex gloves so no skin is exposed.
And Michael said, “I have never felt so angry and humiliated in all my life.”
That’s exactly how I felt when I was sitting in that examination chair. But on top of the anger and humiliation, she made me feel ashamed.
And I thought I was done with HIV shame. You have to understand. I came of age sexually when HIV-AIDS was a forest fire raging across the country, across the world. It was the worst thing you could get. There was no cure. There were no drugs. It was a death sentence. Of course it was weighed down by the shame and stigma of how you get it. It still is.
Safe sex had always been protocol almost always for me. And when it wasn’t, I always thought I was going to be one of the lucky ones that didn’t get it. And I got it in 2002. I was lucky because the good drugs were already there. The drug cocktail had happened. But still I had my own shame about it and I stayed in the closet about it.
Jamie Brickhouse shares his story with the Story Collider audience at Union Hall in Brooklyn, NY in February 2020. Photo by Zhen Qin.
I told Michael and a handful of friends. I told my older brother Jeffrey and I never told my parents because I didn’t want them to worry. That was my reasoning. But if I had had cancer, would I have told them? Yes. The real reason was shame.
Then a few years ago, my brother and I got into a terrible fight and he left me a message threatening to tell my father. My mother had already died and so she died never knowing.
He said, “How do you think your father is going to feel when I tell him you’re HIV positive?”
When I heard that message, for a few seconds, maybe minutes, I felt ashamed and like a dirty, naughty little boy. And then I thought, “No. If anyone is going to tell my father, I’m going to tell my father.”
I called him down in Texas where he lived and I grew up and he just cared that I was okay and that I was going to be okay.
And I said, “Yes, I’m fine. I've never been sick. I take these,” I think at the time it was two pills a day, “and I had no side effects.”
He said, “Yeah, yeah, yeah. That’s what I've been hearing. They've got some good pills these days. It’s not the big deal that it used to be.”
I said, “No, it’s not.”
And after I told him, it liberated me. I didn’t give a damn who else knew. So I told other people and I told friends, and then I ended up including it in a memoir that I wrote, so I basically told the world. You know what? Nobody cared. Until I met Lisa.
Oh, and by the way, this incident with Lisa, it did not take place in a small provincial Texas town like where I grew up. And it didn’t take place in 1987 or 1997 or 2007. I took place in 2017 in New York City on the Upper East Side.
At first, Michael and I didn’t think we could do anything other than we weren’t going to go back to Dr. Flowers, but we started telling people the story and they pointed out she broke the law. There's a thing called HIPAA, Health Insurance Portability and Accountability Act, which basically means that you cannot reveal a patient’s medical information to another person. It doesn’t matter who that person is, my partner or husband, or whichever he is.
And she committed a double whammy, because in New York State there's a think called Article 27F, which deals specifically with HIV disclosure.
And she said she wanted to protect herself? I wanted to say, “Lady, unless you insist on mounting and barebacking your male patients while you clean their teeth, I really don’t think you have to worry.”
And you know what? Even if she had done that with me, which would have been another violation, of course, she couldn’t have gotten it from me, because I’m undetectable.
There's a thing called U equals U, the letter U equals the letter U. Undetectable means Untransmittable, and it is backed up by the National Health Institute. It means that people living with HIV, like myself, who have achieved and maintained an undetectable viral load, viral load meaning the amount of HIV in my bloodstream, through taking antiretroviral drugs, cannot transmit the virus sexually.
You know, a lot of people don’t know that. And even people who aren’t homophobic or HIV‑phobic, they still think that getting HIV is the worst thing, and it’s not anymore. I mean, I don't suggest it but it’s not. It’s basically living with a manageable condition like diabetes. Hell, it’s better than diabetes. Diabetes is a pain in the ass.
And today, sometimes I forget I have it. I've had it now since 2002. I've never been sick. I've never had side effects. And now I’m on one pill a day.
How I love the name of my pill. It’s called Biktarvy, which it sounds like a hunky 1950’s matinee idol. A cheap Rock Hudson. Biktarvy.
So this time I didn’t turn the other cheek. I took action. I filed complaints with the National Institute of Health, the New York State Department of Health, The New York City Commission on Human Rights. It took a while and there was a lot of emails and letters and phone calls and back and forth, but I got action.
Dr. Flowers admitted there had been a breach. Lisa no longer works there. And Dr. Flowers and his staff in the whole office had to be retrained.
Now, of course what did Lisa in was revealing my HIV status to Michael, but the way I see it, what did her in was her ignorance and fear and prejudice. Frankly, I hope she never gets another job in the health industry. I mean, the way she's so freaked out by disease, she should go work somewhere like Purell.
As for me, I am done turning the other cheek. Besides, look where it got Jesus. Thank you.
Part 2: Anders Lee
Anders Lee here. Hi. I hate filling out medical forms for health insurance. Nobody likes doing that. They are tedious, they're redundant, they're kind of invasive too.
I really hate the Mental Health Section. It’s my least favorite part. Because I answer definitely depending on what mood I’m in. Sometimes I'll say I have mild anxiety. Other times it’s moderate. I would never say I have severe anxiety. I don't want people to worry. Well, worry about them worrying.
But there's one part of it that always make me take at least two minutes to sit and contemplate whether or not I’m going to check the box, because most of it… we’re very good as Americans in filling out health insurance forms at this point. We do 50 a year. And the one box that always takes me two to five minutes to decide if I should cross off or not is Autistic Spectrum Disorder.
I was a very slow child. I was stupid, like clinically stupid. Everything was hard for me. I learned to read and write, do math, even simple things like tying my shoes or cutting with scissors. Those things didn’t just feel hard for me as a little kid. They felt impossible.
Now, if I was a few years older, if I had been born in the ‘70s or the ‘80s, I would have been known as dumb. But because it was the ‘90s and we’re approaching a new millennium and they wanted everything to sound scientific, I was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified. PDDNOS, as it’s known in the psychological community. I like to call it ‘Pididnos’. That’s how I identify.
Now, at the time, ‘Pididnos’ was part of the autistic spectrum. But today, it would just be considered Autistic Spectrum Disorder. That’s why I never know what to say because, technically, I guess I have autism, but I don't really relate to the current mode of autism. I can’t do math. I’m bad at math. I can’t do anyone’s taxes. I’m sorry. I have like the ‘90s version of autism. Back then it just meant you were a kid who liked the taste of keys.
Now, there are a few different things I did as a little kid. The doctors would point and would say, “Oh, that’s it. We got an autism.”
Anders Lee shows off his “stim” to the Story Collider audience at Union Hall in Brooklyn, NY in January 2020. Photo by Zhen Qin.
I had a lot of trouble keeping my mouth closed, and I don't mean I talk too much. Like with the tongue open like this. Like this is how I spoke as a little boy. My parents and teachers would try and negotiate with me, they like let me leave it open on weekends. And it had been all right because we lived in Virginia at the time and people just kind of talked this way there.
Another thing that I did, that I still do today when I know nobody is looking, is hand flapping. It’s a stim, short for self-stimulation, a very soothing way, a very good way to stimulate or sooth yourself.
As a matter of fact, if everyone could do me a favor and just close your eyes for a moment. And now think of something that really excites you. Now, flap your hands. It feels good, right? But it looks fucking weird.
That is why hand-flapping was strongly discouraged at the special needs elementary school I went to, because a big part of the school was getting kids to acclimate ourselves to a world where things like hand-flapping, no, no, no. that’s taboo. But wearing a cloth noose calling it a necktie, perfectly normal and acceptable behavior.
It was at that school that I learned that things like having a slack jaw, hand-flapping, those are autistic type things. Those are things that you should be embarrassed by.
Now, I understand now that autism is a very nebulous concept. It’s very subjective. If you look throughout the course of history as I've learned, it’s meant many different things at many different times. There really is no one essential quality that makes some people autistic and other people not. It’s a word. But I didn’t realize this growing up.
So all through that period as a kid, I had a little voice in the back of my head that was always asking do I do this because of autism or Anders Lee here? I didn’t know where one began and the other ended.
I've always had bad handwriting, which is a developmental issue. There are other things, though, that are a little harder to say. I’m a very messy person, which they say is symptomatic of autism. Executive functioning disorders, they call it. So if you're messy that’s autistic.
But if you're on the other end of that and everything needs to be absolutely neat and organized at all times you start to freak out, that’s also autism.
There's some things that are really tricky to define if it’s autism or not. I had strange obsessions growing up. When I was in high school, I was fascinated by the 1996 Presidential Election. Bill Clinton triangulated his way to victory against Bob Dole, the Kansas senator. For some reason that was captivating to me. Least significant election in American history. No reason anyone should know about that. If I was just into World War II, they'd be like, “Okay, he likes history. But ’96 elections? A little spectrum-y.”
But there's one thing that I've always wondered about, and it’s slightly on the lewd side here, but I do not masturbate in the traditional way. I don't use my hand. I can’t. It doesn’t work for me. I need some more movement. Friction, I need friction. I’m a mattress pumper. That’s how I do it.
I know. It’s the stigma around it. This is unusual but there are benefits to it. Like I have very dexterous hips now as a result.
Many ways I’m kind of a pioneer for discussing this. This is not quite a representation for my people in our culture. I don't know if that’s autism or not. I don't know what the deal with that was.
But it wasn’t that big of a deal, until a couple of years ago when I signed up to be a sperm donor. It’s called being a sperm donor but you should be the sperm seller because it’s a business. You get up to $1,000 a month to doing your thing into a cup. It’s pretty unbeatable. And I really needed the money at the time.
So I go to the place and I had assumed that they would give me like a take-on kit. But they don’t do that. They just give you a cup, they send you into a room and there are no mattresses in the room. It’s just a table, a chair, four walls, which I tried to use but there's such a thing as too much friction. Oh, my God, I know. That’s what I would say because, oh, my God, I needed that moolah very badly.
So I did my best to focus. I sat down, closed my eyes and I thought back to the first time I ever did the deed. That was when I was 13 years old and I had just watched an episode of That ‘70s Show.
Anders Lee shares his story with the Story Collider audience at Union Hall in Brooklyn, NY in January 2020. Photo by Zhen Qin.
There was a scene in That ‘70s Show where the mom character, Kitty, she was lying in bed and had an exposed clavicle. I found that very stimulating as a young man. So I sat there, thought back to Kitty and after a few moments, boom. I did it! With my hand for the first time ever. I felt pretty good about myself. I was normal now.
I got the cup and I brought it up to the front desk. The person at the front desk was like, “Did you complete the sample?”
I was like, “I completed the sample alright.”
She said, “Okay, because going over your form you filled out here it says something about a developmental disability.”
And I had to say to her, “I mean, look, when I was a little kid I was diagnosed with autism, but it was the ‘90s. They were giving that away like 3D glasses.”
She told me to have a nice day. That application was rejected.
I realized in that moment that even though I’m a grownup now, people don’t think I’m autistic, I've been hearing, you know. I don't even really identify as autistic, but none of that could change the fact that once upon a time, I was diagnosed with it. And once upon a time, I was a slack‑jawed, flappy-handed kid. That’s just always going to be the case.
The more I thought about it, I realized that that’s okay. Because someone else got to send their sperm to the donor and this was probably a normal person. And the couple that it went to used it to make some normal, boring kids. And those kids will grow up and never give a shit about the 1996 Presidential Election.
I've been Anders Lee. Thank you all very much.