How we remember them: The book of the dead

From the 1980s AIDS epidemic to a genetic family illness to COVID-19, how do the plagues of our time change the way we imagine the lives of the vulnerable and the lost?

Drawing of an address book
[Jawahir Al-Naimi/Al Jazeera]

In the past two years of the COVID-19 pandemic, loss has been part of the lives of millions. In “How we remember them”, we reflect on how we process loss and the things – both tangible and intangible – that remind us of those we have lost. 

In our family, there was a curse for 200 years, a genetic illness that seemed to catch everyone, drown everyone, kill everyone – as if we lived in a fairytale castle that filled up every night with the ocean, while we tried to hold our breaths until the morning. Only one of us survived the curse, my uncle Brian, the one our disease didn’t touch, who died, instead, of AIDS, the curse that drowned a generation in his chosen queer family.

He kept a record of that loss – a magic object, a book. I saw it first when I was 19, in the apartment where he lived, on a small street in the centre of gay Philadelphia, in a row of narrow 19th-century brownstones, in his world of beautiful objects. The dresser in his bedroom was painted to look as if made of malachite, a gold Dunhill lighter was in his pocket, a silver cigarette case on his coffee table painted faux marble, an antique Chinese jar on the table where he wrote, full of pens, decorated with drawings of twining dragons and fish. Next to the jar, there was an unremarkable black address book.

I picked it up, held it, turned it around.

“That’s my most precious thing,” he said, taking it out of my hands.

“Really?” I asked.

“That’s the book of the dead.”

An address book, and a jar with pens
Brian’s address book, left, and his pen jar, right [Photos courtesy of Don Millinger and Eiren Caffall]

He opened the book and flipped through the pages. They were crowded with the names of people he’d known in the whirlwind of gay 1970s and 1980s New York City and Philadelphia. When he paged through the Cs, I saw the name and address of my father, Charlie Caffall, Brian’s brother, who was still alive then. Next to it were the names and former addresses of my Aunt Lois and Uncle Dennis, my grandmother Kitty – all gone. Next to each a little tick. As he turned the pages, I noticed ticks next to almost every name.

“What are those?” I asked.

“I put a check next to the names of the people we lost to AIDS, to kidney disease,” he stared at the book for a long moment, “I can’t bear to erase the names of the dead.”

Waiting to die

Our family curse, polycystic kidney disease (PKD), is a slow-moving inherited monster that fills the kidneys with cysts until they cease working. Most PKD patients – and there may be up to 12 million of us worldwide – live with the illness until middle age, just long enough to have children, when we are faced with kidney failure, dialysis, and transplantation. Since the disease is genetically dominant, most families face generations of loss, with parents fearing the future of their children.

Until my generation, when many resources exist to improve disease outcomes, PKD was a death sentence, and my family expected to die young. In my father’s generation, treatment was a waiting game, and then chaos. Brian and his siblings created a community of silence and shared pain as they waited to die. In a world of people paying little attention to their mortality, they were judging observers from the land of the dead.

Brian’s father died of PKD when he was only six. Eventually, he would watch his brothers and sister die. He was close to his family of origin, not typical for a gay man in late 20th century America. He came out when he was in college, just before Stonewall, and his mother – my Irish immigrant working-class, Catholic, New Jersey grandmother Kitty – accepted his announcement without missing a step. His identity was never a secret, even as AIDS began to turn public opinion against the Gay Liberation movement.

Portrait of a man
Brian Caffall [Courtesy of Eiren Caffall]

In the 40-plus years since the AIDS crisis began, more than 79 million people worldwide have been affected by the disease; nearly half of them have died. As the crisis emerged in America, it arrived first in gay men, and was initially referred to as “gay cancer”. In the first months and years of the disease, when no one understood the transmission mechanism, to be gay was to be suspect. Like the early days of COVID-19, panic and fear ruled – gay waiters, dentists, nurses all lost their jobs as people avoided being in any proximity to the potential of infection.

In the gay community, especially among white, male, urban baby boomers like my uncle, the statistics surrounding their losses in the AIDS crisis are horrific. In a study for The British Academy, Dr Dana Rosenfeld writes, “the epidemic hit male baby boomers much harder than it did older and younger men, causing high numbers of premature deaths, especially among those aged 25-44 … with gay men suffering ‘the most AIDS deaths by far at the epidemic’s height’. In the USA, by 1995, one gay man in nine had been diagnosed with AIDS, one in fifteen had died, and 10% of the 1,600,000 men aged 25-44 who identified as gay had died – a literal decimation of this cohort of gay men born 1951-1970.”

Brian was born in 1947. When the AIDS crisis began in 1981, he was 34.

‘The future was too uncertain’

Brian was the most glamorous person I’d ever met. A maître d at The Russian Tea Room, he name-dropped people he served and Manhattan acquaintances equally – Jackie Kennedy, Helen Gurley Brown, Sigourney Weaver, Meryl Streep – you could never tell what was truth and what was fabulism. It never mattered.

He wore expensive suits, drank the best wine, had a small moustache that was perfectly groomed, his hair slicked back. He had grown up with his widowed single mother, and lived a lower middle-class life in suburban New Jersey. What little money he got he let slip through his fingers, as if he would die tomorrow, “I’m the grasshopper, and you are the ants!” he told friends.

In the article, Painful Inheritance – patient perspectives in living with polycystic kidney disease, a survey of studies on the psychological impacts of PKD in family systems from 2015, Allison Tong et. al. categorises one set of familial responses to PKD this way: “Inability to plan ahead: as the disease progressed and symptoms worsened, patients’ perception of uncertainty and instability of their future also intensified. They became more conscious about their own mortality. Some resigned themselves to living day-to-day, or rearranged their goals and plans with regards to job opportunities, travel and having a family. At times, some patients made immediate decisions or seized opportunities as ‘the future was too uncertain’.”

A girl with her uncle at Christmas in 1980
Brian and Eiren on Christmas day, 1980 [Courtesy of Eiren Caffall]

With no future to save for, Brian was extravagant in his generosity, especially to me, his only niece. For Christmas he gave me rabbit fur mittens in pure white, a slim Yves Saint Laurent dress in shiny plaid crepe with a ruffled collar, a tiny pinky ring with an emerald. He told me, “Take care of the luxuries and the necessities will take care of themselves.” He moved to Philadelphia and accumulated jobs – waiter, sommelier, interior designer – nothing stuck. His friends called him Lady Caffall, thought of him as a Russian ballerina in impoverished exile. The curse of PKD thrummed in the background of every choice. The curse that killed him just as surely as HIV did.

Reaching out with words

In the face of my PKD diagnosis at 22, I made myself a writer of loss. In March of 2022, I went to Philadelphia to interview Brian’s surviving best friends, Bill Whiting, Gary Clinton and Don Millinger, the latter two about celebrating 50 years together. Bill and Don and Gary had all been around the same age as Brian when the plague struck, had all worked in various ways in the AIDS activist community in Philadelphia. I wanted to know if Brian’s relationship to kidney disease had changed how he responded to AIDS. Brian’s response to the crisis seemed, to the three of them, coloured by his experiences with PKD. “HIV and kidney disease? Yeah, the connection was very real for Brian, because when people were getting sick, Brian was one of the people sort of pushing and supportive.”

Brian was not an activist in the way that is most prevalent in media representations of activism. He wasn’t on the front lines of the ACT UP protests, part of die-ins or legislative pushes for funding, CDC support, or political recognition of the gravity of the epidemic. Brian was behind the scenes, working as a writer. If there was a need for advertising copy for ACT UP to use on condom PSAs (public service announcements) in Philadelphia, Brian was handed the raw copy and made it better. He did the same for sex education pamphlets handed out at bathhouses, and for posters for fundraising balls.

As the crisis went on, he transitioned to writing about gay life for the Philadelphia Gay News, where he had a regular column called Pith and Vinegar, and other newspapers, nominated for awards and keeping it light, focusing on the joy of the community as often as not, like he’d been taught to as a Caffall, not dwelling too much on the pain. Bill told me that all of it mattered, his writing, “His contributions were extremely important because he was able, with words, to reach people. You probably have that same gene.”

Standing on the edge of death

In 1990, Brian was told by a doctor that there was no chance he had inherited PKD. He was 43 years old, the age at which his family was already very ill or dying. He was released from the curse, from the single factor that had determined all his decisions.

Brian’s longtime friend, Don, told me, “Brian … used PKD as the reason not to do certain things.” He’d avoided commitment, career, savings, retirement planning. His story mirrors those of HIV survivors in the later years of the plague. As new drug regimens extended life expectancy, HIV-positive patients came back from the edge of death.

As Gary put it, “You get it, you die … people would leave their jobs … do all their travel, figuring, ‘I’m gonna be dead’.”

Then, “all of a sudden … by the way, here are these new pills. You’re gonna survive, you’re gonna live. But people had no more money. They had no job. They were letting go of their apartment, and it’s like, guess what: now you have to reconstruct every little thing.”

Standing in Don and Gary’s kitchen, just after finding out he didn’t have PKD, Brian told Gary he felt the same. It had been eight years since the first man in America was diagnosed with HIV. In a speech, years into the crisis, Larry Kramer, playwright, and AIDS activist, said, “Don’t you ask yourself quite often the big question: ‘Why am I still alive? At some point, I did something the others did. How have I escaped?’”

A pastel drawing of a man
A pastel drawing of Brian Caffall by Michael Stefanowski [Courtesy of Eiren Caffall]

What must it have felt like to stand on the edge of death for so long, surrounded by the dying of two families, the water around you, the last breath in your lungs, and then to blink and find yourself facing a placid shoreline, the waves far away?

There is a great deal of writing on people who sought out their HIV infection, on Survivor’s Syndrome among the gay men who outlived their families, on Survivor’s Guilt in veterans, Holocaust survivors, refugees. It is tempting to reduce Brian’s story to any one of those categories, and perhaps it borrows something from all of them. But to Gary, the idea that he intentionally became infected with HIV is impossible, “I’ll tell you that he said to me at one point after he realised he didn’t have kidney issues, I asked about HIV. And he said, ‘I don’t think I’ll get it. I won’t have HIV because I’ve been very careful. I don’t do any of those things.’”

But somewhere in the years after he knew PKD wouldn’t kill him, he did become infected. None of his friends know how or why. But maybe the fairytale had something to do with it.

‘Are you ok?’

When I was diagnosed with PKD, I went to visit my uncle. We sat on the pink couches in the apartment, tea on the coffee table painted to look like marble. He played me a cabaret musician on CD. “I saw her sing in person last week,” he said, “not a dry eye in the house.”

The song ended and a quieter one started, “I wanted to come here, to tell you in person,” I said. “I can’t imagine telling you on the phone.”

“What, honey?” He turned the volume down on the stereo, picked up his teacup.

“I was diagnosed with PKD last month. I had an ultrasound. I told Dad. I asked him not to tell you. I didn’t want you to hear it before I could see you.”

All the colour drained from his face. He put the tea down and put his head in his hands. We sat like that for a long time.

Becoming ocean - Eiren Caffall - DO NOT USE
Eiren and her father by the ocean, the year she was diagnosed [Courtesy of Eiren Caffall]

“Are you ok?” I asked. “Dad started drinking again. I told him last week, and he told me, ‘You aren’t the disease,’ and then just didn’t talk to me for a week. I can’t get him to say how he feels.”

Brian still didn’t look at me. He kept his head in his hands. “You’ll be ok.”

“That’s what Dad keeps saying.”

“You’ll be ok.”

Outside, the sun started coming down. The CD he’d been playing finished. It was getting dark in the apartment, and I could see the ways in which he’d let it be dark. He didn’t have many lamps; curtains sculpted the light from the street. I could see the bottle of Glenlivet, the glasses close by, the books everywhere, the writing table, the pens in the jar, the address book lying next to it. My name was in there too.

We sat there like that for a long while. Then he picked his head up, walked to the table nearby, poured himself a drink, and said, “Let’s go to dinner.”

Healed, not cured

“It was huge,” Gary told me, “Yeah. It was huge. When you were diagnosed. It was just a sword of Damocles. It was devastating for him.”

Maybe it was that devastation that changed his life. It almost changed mine. In the logic of the family fairytale, my father and his siblings raised me to think I would not have PKD. I was trained to live to tell the tale, Ishmael speaking the names of the dead. It took me years to transform what my doctor told me was a death sentence into a future where I live. That early notion of my survival has been my healing. I have outlived most of my family. I am not on dialysis. I have not had a transplant. If you met me, you would never know I am sick. Brian could only see himself through the curse.

It is important to say that he did not bring on his infection. I have been sick with a chronic illness for a long time. I feel only rage at any implication that the sick bring illness on themselves, or think their way into a cure. I am not cured, I am healed. The former is about science, the latter is about belief. The former acknowledges a disease system that operates through biology, the latter allows for complexity in the quality of my suffering.

The world is too random, and the heart is too complex to assume that we have control over our bodies, and illness is not a judgement, nor is any disability. It is chance, and genes and pollution, it is stress and poverty and capitalism and luck. It is not you. It is not me. It was not Brian.

But what do you have as resources when you become ill? Do you have a doctor who gives you a vision of your future, a family that reminds you of your strength? Or did you inherit a fairytale that you’ll die young, a broken healthcare system, a culture that rejects your identity? Those factors change lives.

Depression and the family story became the truly powerful players in Brian’s illness. In the years after 1993, when I told him I was sick, something changed, “There was a low-grade depression in Brian, that was always apparent to everybody,” Don said.

Slowly the castle filled with ocean again, every night, while he sat alone with Glenlivet and cigarettes, the curtains drawn on the darkening street, and maybe he practised imagining what it might be like when he failed to hold his breath.

A girl in a graduation cap and gown poses with her uncle
Brian and Eiren at Eiren’s high school graduation in 1989 [Courtesy of Eiren Caffall]

That he contracted HIV was not his death sentence, any more than my PKD is mine; people survive both curses every day. The story he was told about his future and the country in which he lived might have been. His lack of planning meant that he didn’t have any savings to afford healthcare. The terrible state of health insurance in the United States meant he had few options as a person living in poverty. When he showed alarming symptoms, Don and Gary sent him to pioneering doctor and figure in the Philadelphia HIV/AIDS community, Nick Ifft, who diagnosed Brian as HIV-positive, treated him at no cost, and connected him to other free medical services. By then, his AIDS was too far along for the cocktail of drugs that could have restored him. He had AIDS dementia, lung cancer spreading to his brain. The ocean rose over his head.

Bill told me, “You know, when he found out that he had HIV, he made a chilling statement to me, ‘I now really feel like I’m a member of my own family.’”

Who holds the names of the dead?

Brian died in 2003. He was 56. He was cared for by the infrastructure created and accessed by AIDS activists – Gay Men’s Health Crisis in New York, Meals on Wheels, AIDS buddies – a future they made for themselves of mutual aid and survival, a future they imagined and enacted in the middle of a curse, a plague.

His ashes were scattered by all the people who loved him – some in the Cloisters, some on Oscar Wilde’s grave, some in the ferns at his favourite gay bar in Philadelphia. The address book is in a box in the basement, along with the copies of Playbill Brian collected and a silver hairbrush. The cup with the dragons and fish sits on my desk now and holds my pens. I can see it as I type. The lighter he carried every day is in my son’s pocket. He found it and cleaned it and repaired it until, on the anniversary of Brian’s birth, he lit it for the first time since Brian died.

Since I am going to live, I am using the other gene, the one for writing, to write my family’s story, and Brian’s, the story of my own son, who still doesn’t know if he’s inherited PKD.

On that visit when I first saw the address book, Brian read to me from his favourite book, James Agee’s posthumously published masterpiece, A Death in the Family. In that book, a child loses his father at six, the same age Brian was when his father died of PKD. In the opening chapter, Knoxville, Summer 1915, the child voices a memory of safety and peace, “By some chance, here they are, all on this earth, lying on quilts, on the grass, in a summer evening, among the sounds of night. May God bless my people, my uncle, my aunt, my mother, my good father, oh, remember them kindly in their time of trouble; and in the hour of their taking away,” Brian read to me.

Don’s address book holds the names of the dead, too. He showed me the entry for Brian, still not erased, “There was something there, an intangibility. I did not want to give up and to make that tangible act of crossing out or erasing or removing. It was a finality that I wanted to delude myself wasn’t there,” he said. “Who holds the names of the dead?”

Here I am, holding Brian’s. I write him, as this new plague changes how we imagine the lives of the vulnerable, the rejected. I look at the cup full of pens. I take down his copy of A Death in the Family from my bookshelf and read the last line, “But he did not ask, and his uncle did not speak, except to say, after a few minutes, ‘It’s time to go home,’ and all the way home they walked in silence.”

I keep his silence and I break it. I imagine a life that rejects our curse and embraces a future for myself and my son. I choose to write a new fairytale, one where we change the story so that the rising ocean does not drown us – a new book of the dead and of the living.

Source: Al Jazeera