“I thought you might want to read this,” my dad said on an evening in 1994, when I was 21, holding out a thick sheaf of printed computer paper fastened together by a large black binder clip. “It’s done.”
He stood on the carpeted landing midway down the staircase that led to the finished basement and my bedroom. He was dressed in a pair of baggy sweats and a fuzzy fleece pullover. His feet were bare. I’d been on my way to my room for the night, planning to change into my own sweats and catch up on some schoolwork for my graduate classes. He’d startled me when he appeared in the doorway. I thought he’d gone to bed.
Nothing on Dad’s face betrayed emotion, and his tone was matter-of-fact, but I felt the heightened intensity of his look as I reached for the pages. The story now in my hands had begun nine years earlier when, at only 42, Dad suffered a heart attack, underwent a quadruple bypass, and received a blood transfusion that left him HIV-positive.
It was 1985, a time when ignorance, hysteria, and stigma fueled the public response to this new and frightening virus. Many people known to be HIV-positive were fired by their employers, evicted by their landlords, or shunned by their neighbors. Dad expected that he would die within months. He refused to allow his family to endure any form of ostracism, so he decided his illness would be a secret.
Exactly how I found out remains a baffling hole in my memory, but within days of Dad’s diagnosis, I knew. No one was talking to me about it, and in that big silence I understood that I shouldn’t talk to anybody about it either.
Even after my parents figured out that I knew, we were complicit in keeping up the facade of a normal life. I think my parents believed the less they said to my three siblings and me, the more we could pretend our lives had not been upended.
Though my parents didn’t talk to me about their anguish, I felt it hanging in the air. My own terror about this widely misunderstood virus threaded into my chest and knotted there, tightening with each passing day, month, year. I couldn’t stop imagining how Dad would die.
The agony of watching his larger-than-life persona shrink beneath the stigma and shame of his illness, which developed into AIDS after five years, was almost unbearable. But without anyone saying so, I understood that showing my parents my pain would be too much, so I stuffed it down. Instead, I molded myself into what I knew they needed me to be. My middle name is Joy, and my Dad had called me Melanie Joybells from the moment he recognized me as a sunny, happy baby. I knew my role and performed it exceptionally well, never showing the side of me that was anything but OK.
The pages my dad handed me that night were a book that he and my mother had written about his diagnosis. It was a risk I never dreamed they would take. To me, the endeavor felt precarious, but I was hopeful. Perhaps, thin thread by thin thread, their words would weave a lifeline that could finally pull us out of our isolation.
When I finished reading their manuscript, I leaned back and let my aching shoulders sink into the pile of mismatched throw pillows. It was by then 2 a.m., and I was wide awake, trying to sort out the thoughts unspooling in my brain.
Despite having been present for nearly everything I read in my parents’ pages, I felt as if I was on the outside looking in on their story.
I learned that more than once my father had considered suicide. “I carried sufficient drugs in my medical kit that could have ended my life quickly,” he wrote. He’d battled debilitating depression and lain awake anxious in the night because he too couldn’t stop thinking about how he was going to die. He’d raged at God and floundered in his attempts to figure out how his Christian faith connected to the cruelty of his circumstances. “But AIDS — what possible explanation for this? It completely floored me — this disaster seemed so merciless.”
Dad wrote about his decision to give up being a surgeon out of concern for the safety of his patients. He had lost the vocation he loved and with it, his identity and self-confidence. “Something of myself is missing and as a result, I feel less of a person,” he wrote.
And my mother had borne the crushing burden of being my father’s sole confidante after his diagnosis. My father was terrified of the dangers of disclosure, so she could never seek the support she needed. So, alone, she’d shouldered his suffering and her own. “Sometimes I feel like I’m up and down on the same roller coaster as he is,” she’d written.
There were so many things I wanted to ask them. But the burn of something deeper than my parents’ revelations of their trauma was rising in me. Why did it matter that I hadn’t known the intimate details of their suffering as it happened? What could I have done for them? Another question loomed larger, one that would gnaw at me for the next 20 years. What might it have done for all of us to speak our pain and share in it together?
My father was 51 on the night he gave me the manuscript to read, the same age I am today. He and my mother would publish it a year later, six months before Dad’s death. For two weeks, the book would appear on the Toronto Globe and Mail’s bestseller list. As they’d hoped, it would prompt an unexpected and compassionate response of support from family, friends, colleagues, and strangers around the country.
Everyone, it seemed, was talking about my parents’ story except them, my brothers, and me. The book and its revelations remained largely unspoken. Here I had been given access to intimate details about my parents’ lived experience, but without the opportunity to discuss it, the distance between their experience and mine remained. With no space for my questions, there was no room for catharsis and healing, either.
Over the past decade, I’ve written my own carefully crafted narrative of what it was like living those 10 years under the veil of silence while my dad was still alive, and what it was like to continue carrying that silence for 20 more years after he died. The gnawing question of how things might have been different if we’d pulled back that veil sooner has hung over the story. I’m changed by it.
I understand my parents’ impulse to shield us from what hurt and frightened them. These familiar platitudes have spilled often from my own lips with my children: There’s nothing to worry about. Everything’s fine. It’s not that big a deal.
But I also understand that there’s nothing safe or stable about coping with those big emotions alone.
When my 22-year-old son finished reading my manuscript for the first time a few months ago, he FaceTimed me right away from his apartment in Toronto. “I took notes,” he said. “I have a lot of questions.” It’s something I never said to either of my parents.
I settled into my chair, my laptop propped up so my face was level with his on the screen. “Let’s talk about them,” I said. And for the next two, beautiful hours, we did.
Melanie Brooks is the author of, most recently, “A Hard Silence: One Daughter Remaps Family, Grief, and Faith When HIV/AIDS Changes It All.” She teaches creative nonfiction in the MFA program at Bay Path University and professional writing at Northeastern University.