Today is World AIDS Day, and December is AIDS awareness month. My brother, John, died of AIDS 34 years ago. Recently, John’s youngest son and his family visited Boston. We lounged in my living room, joking around. We’d had some wine, relaxing after a long day of wrangling little kids on vacation.
“I’m 44. I’m older than my father was when he died,” Todd said, apropos of nothing. “It’s sad.”
I nodded, a bit woozy from the wine.
“But what makes me feel worse is how everyone lied to me.” Todd looked at his cousins. “Even you. You guys all knew and never told us. For years.”
As a psychotherapist, I’ve spent my career helping people sort through what is accurate about the past, their memories and, more important, what remains true about themselves. I know family secrets cause much betrayal and pain when they’re discovered. And they are always discovered. Families keep secrets for all sorts of reasons but mostly because we don’t know what else to do. But whom we are actually protecting with these secrets and lies is up for grabs.
I have vivid memories of John and I on the beach in Wellfleet, Massachusetts, talking and laughing. Six children between us, running, digging, playing elaborate fantasy games and building cities out of driftwood. Our blankets lay spread, piled with sweatshirts, suntan lotion and newspapers. Near us are two coolers full of peanut butter sandwiches, beer, juice, peaches and napkins. This was a luxury of the highest order. Later, we piled the kids into the car and drove to Provincetown for dinner. We drove along the dunes, through the late sunlight, with the Beach Boys playing at full volume, with the kids giddy from surprise with such carefree adults. Every night that week, we had root beer floats on the pier, with the tar smell and the fishing boats and with the moon making its strong light shadow on the water.
Three years later, in the summer of 1986, John was diagnosed with AIDS. He was 42. His oldest was 14 and his twins were 11.
The previous year, John had been ill, in and out of hospitals with mysterious symptoms. None of the doctors suspected AIDS or even considered it. The virus itself had only recently been discovered, and the scientific community didn’t yet have a universally agreed-upon name for it. Although researchers had developed a test, it was months before any doctor thought to use it. After all, John was a professional, white, upper-middle-class father of three children. He had a wife. This equaled not gay. Not at risk.
“Although researchers had developed a test, it was months before any doctor thought to use it. After all, John was a professional, white, upper-middle-class father of three children. He had a wife. This equaled not gay. Not at risk.”
I remember staring at the chip in the terra cotta tile on the kitchen floor while I held the phone when John told me he had AIDS. Pasta water heated on the stove, and the kids were at the table doing homework. In the living room, the sun spotlighted the tulips and daffodils in a vase on the old varnished telephone cable spool we used as a coffee table.
I remember this the way my parents stated exactly where they were when Pearl Harbor was bombed, the way I remember my fifth-grade teacher’s face as she got the news that John F. Kennedy had been shot and, later, the way our children would remember 9/11. The freezing of time.
“Eighteen months’ life expectancy,” John said over the phone
“Yes,” I said.
“Yes,” I said again. I wanted to say no. But I said yes because I wanted John to know I would be strong for him.
“Don’t tell anyone,” he said next.
This I didn’t expect.
“Why not?” I asked.
“We have to protect the kids. They can’t know. The town can’t know. We’re not telling anyone. Promise me you won’t tell anyone.”
“What about Dad? What about Dan?” I asked.
“It’s OK to tell Dad and Dan,” he said. “But no one else.”
AIDS hit the media in a big way in the 1980s. In some little town in Florida, mosquitoes were suspected of spreading the virus. An article appeared about the possibility of bedbugs in Africa carrying it. Children with AIDS were hounded out of school systems. Experts tried to stress how difficult it was to catch AIDS from casual contact. Fear, they tried to remind us, shouldn’t take over.
But it did.
Dan, my husband, was terrified when he found out and didn’t want our kids to be around John or their cousins. He didn’t want me to visit their home.
“Your fears are irrational,” I argued. “My brother’s dying, and I will not abandon him.”
“What if they’re not irrational? What if I’m right?” my husband asked, panicked. “They thought the blood supply was safe until they found out otherwise.”
John and his wife were determined no one should know. Was it the fear of their kids being shunned? Was it worry that he’d be thought gay or a drug user? I hated the silence, the fear and the stigma. How terrible to be dying and to have to deal with it alone. If only they weren’t so intent on keeping secrets, we could talk and deal rationally with my husband’s fears. If only my husband were not so afraid, they wouldn’t be intent on keeping secrets.
Over months, my husband and I fought it out while I visited John alone. The cousins were hurt and confused about not being together. Finally, my husband and I agreed that to visit, we would tell our children so they would know not to share toothbrushes or utensils on the off-chance it could be spread this way. We told them they must keep the secret of John dying of AIDS from their cousins. And they did — even my youngest, who was only 6. It was a huge burden for them to carry.
After Todd’s recent visit, I asked my son, who was 12 at the time, what he remembered. He said, “I remember you telling us that we must not tell it was AIDS. You told us that Uncle John had told the cousins that he had blood cancer. I also remember asking you what to say if my cousins asked us about it. You told us we still couldn’t tell. I remember saying, ‘So, you’re asking us to lie?’ And you said, ‘Yes.’”
When I was 6, John, nine years older, discovered me making a map of an imaginary town for my stuffed animals in my bedroom. Using many-colored crayons, I drew the design directly on the floor. The bunny with a vest and glasses was the mayor.
I must have looked frightened when he appeared in my doorway; I remember him saying everything was OK, that it was a beautiful drawing, but we would need to clean it all up before Mom saw it. He got the rags and Windex. He sank to his knees and scrubbed.
John taught me to dance in our living room. He put a record on the turntable, placed my feet on his toes and taught me to cha-cha. Stepping and swirling, laughing with pleasure and anticipation, I imagined myself at a high school dance. Of course, there was no such thing as dancing the cha-cha when it was my turn for high school 10 years later.
John was the one who explained to me about the sudden silences and frozen looks my parents gave each other when my father had an affair. He was the one who helped me make sense of the family mysteries.
As adults, our nine-year age difference shrank to nothing. John married and had three kids in his late 20s. I married and had my kids early, so our children were around the same age.
We gave each other a great gift, John and I. We held each other up to scrutiny, putting the mirror in the merciless sunshine, and we liked what we saw reflected back. How many people in our lives can do that for us? Not many. Not so many that we can afford to lose one without great shattering pain.
Our separation started before his actual death.
“You don’t understand,” he said to me. “You have no idea what this feels like.”
I nodded. He was dying. I was surviving. We could hold hands. But there were precious few words to throw across that chasm.
Before he died, some old friends of his came to visit while I sat in the sun on the deck with him. They talked of business they used to have in common and grew impatient when John lost interest. They told him:
You should get out more.
You should fight this. Fight it hard. Don’t give in.
You should laugh more.
I hated their list. Even when dying, we had to worry about other people’s expectations?
“Whatever his reasons, he kept a huge part of himself separate from many people, including me. Does that negate the intimacy of our relationship? Not for me.”
I remembered then the conversation John and I had earlier about telling the kids how sick he was. I told him:
You should make an audiotape.
You should tell them you’re dying.
You should give them a chance to have their feelings.
We all have our shoulds. As if there is a wrong or right way to be dying ― a good, successful way or a bad, failing way.
John and I were close, incredibly close, but we never discussed how he got AIDS. After he died, I assumed he was closeted. He came of age in the 1950s when being closeted was common and often necessary. Perhaps he was OK with this and comfortable with himself. Maybe he was terribly ashamed or maybe merely private. I will never know.
Whatever his reasons, he kept a huge part of himself separate from many people, including me. Does that negate the intimacy of our relationship? Not for me. After all, I didn’t discuss my sex life with my brother. But living with secrets is difficult and lonely. I wish he didn’t have to die lonely.
Cancer, not AIDS, was listed as the cause of death in The New York Times obituary. Eventually, years later, when John’s children were in high school, their mom took them to a family therapist and told them the truth. I was so relieved. Now we could talk about their dad and grieve openly without the lie lodged like a boulder in a streambed forcing the water to swirl around it. I no longer needed to worry that this secret would be accidentally revealed.
In the 34 years since John died, our families have maintained our tradition of frequent gatherings. These gatherings still cause me to miss my brother with shocking intensity.
During Todd’s recent visit to Boston, when he spoke of how hurt he was about the secrecy of his father’s death and how this betrayal lingered over decades ― I was struck by how none of John’s children had spoken of this before now. What did it feel like to be lied to by their family? By me? I had never asked them what it felt like for them to be the last to know, and I had certainly never apologized for it.
At the time, I rationalized it by telling myself it wasn’t my call. It was John’s wish. Their mom was intent on keeping it a secret out of fear of people’s reaction.
Even now, I’m not sure what I should have done differently while John was dying. It seems honorable to honor the wishes of the dying, but after he died? I no longer believe that I should have kept the cause of his death from his children. I am sorry. These family secrets have a long shelf life, and they can continue to cause hurt through generations. Lies separate us.
These cousins were close. They still are. But they all live with knowing they once betrayed and were betrayed by each other.
Virginia DeLuca lives and works in Boston. She directed treatment programs for violent offenders and is currently in private practice. She’s the author of the novel “As If Women Mattered,” and has recently completed a memoir. Her essays have appeared in the Iowa Review, Self, Glamour and Parenting magazine.