Actual Cause of Death

Illustration by Marcos Chin

When someone asks me how my father died, I always answer the same way. The same lilt, the same swallowed words: "Actually," I answer, "he died of AIDS."

I'd like to think of myself as someone without shame. Someone so deliciously comfortable in her own skin that the battles and judgments of life mean nothing. But my near-apologetic "actually" tells a different story.

If my father had died of cancer, would I preface it in such a way? Or in a car accident? "He had a heart attack when he was young. It was tragic. He fell from a ladder. He had diabetes. Gout. My father died in a bar fight. He was shot."

There is shame tucked into the cheek of the word AIDS that part of me still bears. And just last year, at my 25th high school reunion, someone asked me what my husband did. "Actually," I said, "my partner, well, she is a therapist." Maybe I'm used to carrying around a bit of shame.

There are people who face down social stigmas, who share their stories without a lilt in the voice. I'm not one of those people. At times I wonder how much of my trepidation is due to my father, and his hidden sexuality -- his skeletons, his shame. I still don't know if he ever would have had the courage to live openly as a gay man. Toward the end of his life, he described himself as bisexual. He sometimes shared a self-diagnosis: sex addict. It was only on his deathbed that he admitted to being gay. Does some of his hesitancy linger in my own blood?

I was 19 the summer I learned about my father's HIV. My mother, brother, and I had just moved back to Pittsburgh after living in Germany for two years. My mom had transferred abroad for work, and after the initial shock of living in a foreign country subsided, we found beauty and adventure all around us: visits to majestic German cathedrals; school trips to London, Paris, and Brussels; summer vacations in Spain; spring breaks on the island of Crete. When we came back, we were depressed to have traded Old World charm for 1980s strip mall America: Foodland. Thrift Drug. TGI Fridays. Sbarro.

I'd long been suspicious about my father's health. He was losing weight, he had "good friends" who had AIDS, he'd had two recent bouts with "walking pneumonia." Cancerous cells of some kind had been removed.

Finally, I confronted my mom while we worked in the backyard, planting flowers in the warm sun.

"Does Dad have cancer, or what?"

"Well, ummm...yes," she began. "I believe the cells removed recently might have been cancerous..."

"Oh, thank God," I interrupted. "I thought he had AIDS!"

"Well, sweetie...Actually..."

She told me she'd known he was gay for some time. "My friend Paul told me a while ago." Summer was bursting all around us. Pittsburgh's abundant trees were thick with leaves. But me? I was shrinking, lost. I was in tormented love with my best friend from Germany -- who wasn't talking to me after I'd told her I loved her -- and now...This? My father was gay and he had AIDS? Instead of feeling a sense of camaraderie with him, I felt remarkably alone.

Later that summer, a friend and I went to an arts festival at Penn State. At first, the mood was light, almost cheery. But after one too many wine coolers, I fell into a kind of solitary drunken fervor and found myself fumbling from frat house to frat house. My friend, deeply concerned for the mess of a person who stumbled back to her now threatening suicide, called my mother. In turn, my mom convinced me to get help for depression.

After some research, we decided on a hospital in Baltimore. It was an architectural giant, an 1800s mansion with delicate finials and leaded-glass windows looking onto well-manicured grounds, perennials in bloom, bright green grass, water fountains, and rosebushes.

About halfway through my stay, my father came to visit. We strolled around the fountain and pulled dead petals from the flowers as he told me about his life, how his HIV was in check, how I shouldn't be worried because he was "taking care of things." He would "beat this," he said. It became his mantra. He'd told me all of this before. On the phone. In person.

My dad's promises seemed optimistic, but also distant, as if part of him believed what he was saying while another part feared he was selling snake oil. During my father's visit, he also gave me a photo album he'd made for me that included descriptions of each picture written on sticky notes. "Where you were born" sticks on a 1970s picture of the Cabell County hospital in Huntington, W.Va. "Some Christmas pictures. Where are the rest?" accompanies a page of photos of my younger brother and me, tearing through our presents. The note on the last page reads, "We can finish this sometime."

Sometime? When would that be? Each step we took, each ticktock, ticktock, felt like a march toward his death.

That visit, he also told the staff that what was wrong with me was actually "simple." He then announced, "My daughter is gay!" This was shocking. I had a boyfriend -- many boyfriends. In fact, he put pictures of two of them in the album, the note next to one reading, "Hey -- I liked him!"

I don't remember my father being as astute as he was on this day, but everyone who knew him swears he was terrifically sharp. What I remember most is the fun-loving sales guy, who was proud to show off his work to me. Thumbing through Businessweek, he'd stop on an ad, "Kodak. See this spread? I landed this." I still have one of his business cards -- on the front was his name and number. On the back, these words: "Since I will be leaving my office on most days at noon to play golf, I won't have time to call on you again this summer. Please mail your orders to my attention. I will be around again this fall, kissing your ass as usual."

I grew attached to that version of my father, willing to play the game, but tongue-in-cheek. While relatively one-dimensional, this person was much easier to understand than the tormented fractals of a man trying to escape his past, confused by his present, and never really whole. That he had marched into the hospital and pronounced me "gay" was as stunning in its accuracy as it was in its inaccuracy.

At the time I thought, The fucking nerve. There are plenty of other things going on in my life. Maybe I underestimated the toll being closeted was taking on me then. But I felt like I had a hundred other reasons to be in that hospital -- drinking, depression, isolation, oh, and my father's imminent death from AIDS.

With his HIV-positive diagnosis, though, something shifted in me. An AIDS button famously proclaimed silence=death. In my eyes, my father's silence, his repressed homosexuality, did equal death. He told me he had contracted HIV from unprotected sex with men -- but that he had no idea which man.

"There were too many," he said. His behavior seemed rooted in a kind of self-hatred and shame, the kind that could kill.

So I made it my mission to be different. That fall, back at college for my sophomore year, I fell in love. Chris was a good friend who'd been with a woman before. We both loved Kate Bush and OMD. We lived on the same floor of our dorm and had the same group of friends. We held hands openly, marched in gay pride events, and burrowed deep into collegiate lesbian love. We first kissed on a glorious evening in early October, and even now, when the initial fall chill hits the air, I think of Chris and her sparkly blue eyes.

After my junior year in college, my family took a trip to Kiawah Island, S.C. -- my mom, dad, brother, and I. My father was on leave from work. His condition had worsened somewhat, but he was mostly fine. He gave himself daily interferon treatments through a PIC line in his chest. We rode bikes together around the island. And my father, the "sales guy," made art. He wasn't an artistic person, but since "retiring" (the official story), he tried.

We worked together on a sculpture of my brother, a bust. We smeared thick, gray clay around a Styrofoam head. I remember shaping his nose with my father's new clay tools -- pressing, shaping, looking closely at my brother's eyebrow, his profile, and making adjustments. We worked together in comfortable silence. Three weeks later, my father was in the hospital. He was confused, weak, and feverish. Three weeks after that, he died.

I remember one of my last afternoons with him in the hospital. Though most of his time there was spent in a thick haze of dementia, he had a moment of laser focus. He wanted to write in my journal. I turned to a fresh page and handed it to him right away. He held the pen tight, but what came out was just a scribble of loops and lines. Exasperated, he set it down.

"This won't work."

"What do you want to say?" I asked. "Maybe I can help."

For nearly three weeks, he'd been slurring his words, his voice thick, his eyes absent as he stared off into the distance. But right then, his speech was clear. "I need to tell my parents I'm gay." I set the pen down. "Wait, what? Why?"

He looked at me, looked right at me with sharp clarity, paused, and said, "It's really important. Telling my parents I'm gay will mean I'm not a liar anymore."

He then drifted away again, looking out into the hallway, mumbling, and eventually falling back to sleep. Twenty-two at the time, I focused on the unnecessary drama of the reveal. I mean, here was a man who'd wasted away to nearly nothing, lying in a hospital bed with a diaper, a catheter, his hands in restraints so he wouldn't pull out his IVs -- a desperately slight version of his former self. Did his religious, conservative parents really need to know how he contracted AIDS? Wasn't his offhand "Was it a blood transfusion, was it unprotected sex, who knows for sure?" enough of an explanation?

When they finally arrived from Daytona Beach, Fla., he was in a coma. He was never able to tell them. And I decided not to. What's the use? I thought. Better for them to live out their days believing that their son was an "honorable man," with a wife, two kids, a respectable job, a nice car.

My father spent most of his 44 years behind a facade, only willing to expose his true self on his deathbed. I may be further along than he was, but there are still remnants, bits and pieces of a wall that I continue to hide behind. The world isn't constructed in a way that makes living a completely authentic life easy. We all carry secrets; we all get tired.

But.

To become the person who stands tall. To become that person for me, for my father, for my wife, and for my son, to become myself.

There's always that.

A version of this essay was first published at TheRecollectors.com, a Web site and community dedicated to remembering parents lost to AIDS.