Writing & Illness: More Than Metaphor

Author: Victoria Brownworth

March 11, 2012

In the room where I used to write every day stands a cork board with photographs of women writers and artists I love. Some, like Audre Lorde and Muriel Ruykeyser, I have been privileged to know. Others, like Flannery O’Connor, Lillian Hellman and Virginia Woolf have informed my work, but were dead before I was a writer myself.

In the photograph of O’Connor, she stands on her front steps in a dress with a very full skirt. She stands with the aid of her crutches. At her feet is a peacock, its head bent and tail unfanned, but magnificent nonetheless.

I have always been fascinated by this photograph because it embodies all the contradictions of O’Connor the person and O’Connor the writer. She was seriously ill for years, dying from lupus at 39. Yet, notwithstanding that devastating illness, she wrote two major novels, two collections of short stories and many essays. She lived in the rural South and raised exotic fowl, like the peacocks, which for her were both comfort and metaphor.

In that photograph she looks happy and vibrant. Yet it was taken not long before she died from complications of her disease. She was quite frail then, needing the crutches even to stand. Still, that photograph embodies the writer in her element–strong in defiance of all that would mitigate against her creativity, her passion, her life-blood.

When I used to write in that room, I felt impelled by those women–their strength, the things that motivated them, the contradictions. There’s a photo of the aging Alice Neel, one of her paintings behind her. In her 20s and 30s she was so poor, some of her paintings are done on slats taken from the insides of the drawers of a dresser. Other small ones are done on shirt cardboard.

Back before I was ill myself, back when I was a writer who traveled to the story, rather than needing stories to come to me, I spent a decade covering writers who were dying.

It wasn’t a plan–I was a young reporter and I got assigned a beat that no one thought would be big in the 80s: AIDS.

In the most virulent years of the epidemic, I made friendships and acquaintanceships, only to have them evaporate into the grim mist of death. I would sit, the very picture of youthful health, and talk to gay men not all that much older than I–sometimes younger–who were dying.

Most of these men were trying to eke out a last flush of exegesis and illumination of their lives before they died. Some could, some couldn’t. For years I was surrounded by the urgency of these impending deaths, powerless to save the lives I had come to cherish. When people wonder why we were all so angry in those years, that is why. The accident was right in front of you, but you were powerless to staunch the hemorrhage.

I spoke with poet Essex Hemphill on the phone one day as he lay in intensive care less than a mile from where I lived at the time. He was in isolation due to the extremity of his illness–you couldn’t visit because you might make him more ill or you might get what he had.Essex had to stop speaking periodically because the pain from the rectal abscesses he had literally took his breath away and the fever made him unfocused.

He died in 1995. At 38.

My good friend Darrell Yates Rist, who had gone cross-country to finish his book, Heartlands, about the lives of gay men in America, became another silenced voice. Critics didn’t get the book–some found it sappy, others beside the point while we were in the throes of the AIDS crisis that would later take Darrell’s life. But the book was about living–how we live queer in America–not how we die.

That was the story Darrell had wanted to tell. He told it lyrically and well. Passages from that book still haunt me. Are we so callous to the implications of living, the responsibility of charting our own existence, rather than our epitaph?

Darrell and I used to meet in a little arts café in Greenwich Village in the years before he was sick. I was no longer living in New York, but commuting there from Philadelphia. Strains of various operas would play in the background as we sat looking out onto the street as we talked about writing and love and the future we both thought would be so different from what it turned out to be.

One morning I awoke from a dream, tears streaming down my face. In the dream, Darrell had AIDS. He was dying. Horribly, as I has seen other people die–the Kaposi’s lesions filling their throats, the PCP asphyxiating them. Without thinking, I called him–still in bed, only half awake, the hiccupping click of sobs still coming from my throat.

There was silence on the other end when I asked if he was okay, told him about the dream, wanted to hear it was only nightmare.

He’d been diagnosed two days earlier. He was still reeling from the knowledge.

The last time I saw him, he had come to visit me in Philadelphia. I was too ill myself to leave the house at the time. It was a warm day–I cannot remember now if it was early or late summer–but the back door was open and the garden which I could no longer tend had run amok, yet was still discernible as a garden. We stood in my kitchen, looking out onto the yard. I had always thought of him as much taller than I, because he was larger than life. As we stood together, I realized he wasn’t.

He was gaunt and his skin had an orange tinge to it that looked like a bad spray tan. He was a hairy man with olive skin–handsome and virile before his illness, his complexion inherited from his mother’s Hispanic lineage. But now I could see he was slipping away from himself, yet still trying to hang in, hang on. He’d made the trip to Philadelphia from New York because he thought it would be his last.

It was.

I had made us lunch that day. Quiche and salad. Some pasta thing. A dessert of fresh berries with chocolate and a sponge cake. We drank iced tea and talked. He sat in a rocking chair in my living room and I lay on the sofa.

We had more talks after that, on the phone. He was angry, but not bitter. To the last he was an activist, intent on making noise to the end. He was enraged that no one got AIDS, still, despite all the dying. He hated that the gay men he knew didn’t understand that cancer was becoming a lesbian epidemic. He thought I was brave. I thought he was beyond brave–amazing. It’s been so long since he died and yet I think of him often, wishing he’d gotten the critical acclaim he deserved before his death, gotten to write down all the things he was thinking before it was too late.

He died at Christmas, 1993. He was 45.

Assotto Saint–born Yves Lubin–was a poet, performance artist, diva. He died a few months after Darrell, in 1994. He was 37.

I lost a lot of friends and colleagues that year. Assotto was one of the most beautiful men I’d ever known. He was fierce before we adopted that term for ourselves. I thought he was strong and had a brilliance to him. We talked a lot in his last year. He was filled with rage over not just his own illness, but that so many gay black men were dying, unheard. He begged me not to let the voices die, to memorialize them.

I wrote an essay for Lambda Book Report that year, “Lost Voices, Lost Lives: Death of a Generation,” in which I delineated how a generation of black voices had been lost to AIDS. It reminded me of the generation of young British writers lost to World War I–the Rupert Brookes and Wilfred Owenses dead in their 20s. Except this was not a war. Or was it?

When Assotto died, his mother called me. I can still hear the Haitian lilt in her voice. His voice was in her voice. She wanted me to know her son valued me. I wanted her to know how beautiful he was, how much he moved me, that we shared ferocity and rage, and that I would not let his voice be silenced if I could help it.

*

In November 2011, I nearly died. One lung had ceased to function, the other wasn’t doing so well. My heart, damaged by a congenital cardiomyopathy just discovered a few years ago and unfixable, was beating wildly in an attempt to counterbalance the lack of oxygen.

On the way to the hospital I knew I was dying–you do feel it–and I was terrified, begging my wife, who was driving us in the middle of the night, not to let me die.

Please.

It isn’t the thought of being dead that scares you. It’s that you’re not ready. You have so much more to do, because we are all lazy, we writers, even my friend Greg Herren who writes more than anyone I’ve ever known, or my old friend Tee Corinne, herself dead from cancer too soon, who was always doing some new project. We are lazy because we always think there’s more time.

Except so often, there is not. Three months after nearly dying, after waking up every night in the ICU drenched in sweat from fever and my imperiled lungs and the drug cocktail that made me feel sick in a different way, I have been writing as much as I can. But it is not enough–it’s not enough for the ideas in my head and it is not enough for me and it is not enough for whatever time is ticking away from me.

Pain wears me down, exhausting me. And my body works against me, over and over, all the time. Breathing treatments take time–an hour here, an hour there. Medications make me sleepy or dizzy or just unfocused. Insomnia plagues me, because pain is worse at night and so I always feel tired, unrested. I lie in the dark trying to sleep, while lists of things I want to do form and re-form in my head. A friend who died a few months ago haunts my dreams and reminds me that death is never very far away: inevitable death is the prompt that should keep us looking back over our shoulder at life.

I sit on my bed, cross-legged, hunched over the computer for hours at a time, but I’m an inveterate and omnivorous reader and time can fly as I read and read and write not nearly enough.

I have daily correspondences–the wonder of the Internet–with two writer friends. We talk every day about writing and I know that’s good for me, because I am a recluse. Like O’Connor, I rarely leave the house. I go out to teach and to doctors and hospitals. But there are days at a time when I cannot even go outside, let alone “somewhere.”

*

A week ago I was sitting in a doctor’s office reading an essay in The New Yorker. It was written by Donald Hall, former U.S. poet laureate. As I told my writing students the next day in class, the piece wasn’t really about anything, and then proceeded to discuss it for an hour. Because, of course, it was about life and death and the continuity of the seasons. And about writing.

Hall was sitting in a chair in his New Hampshire home, looking out onto the snowy vista, contemplative, in mid-January. He’s in his middle eighties now, so contemplation is the order of the day–all days. He was thinking about this view out the window and the life in that house, the farmhouse his family had lived in for several generations. His father died young, at 52. His wife, poet Jane Kenyon, whose work I loved, died young, at 47, from cancer. His mother died old–over 90, she was.

Hall doesn’t talk about his own impending death–though impending it must be. He does touch briefly on his infirmities. He goes to a museum in a wheelchair pushed by a companion.

It was a compelling piece, this piece about nothing. Except writing about the life of the writer and the life of the mind and what the writer sees when he or she looks “Out the Window” (the title of the piece) is never nothing.

In 1995, in my book, Too Queer: Essays from a Radical Life, I wrote a piece titled “The View from My Bedroom Window.” At the time I wrote it, I had spent over a year in bed, nearly paralyzed by an unending MS exacerbation, unable to get to the bathroom, which is a mere 15 feet from my bedroom, without a wheelchair.

My bedroom–shared with my then-partner–had become a hoarder hell. I lived in that room stacked with books and papers, six bookcases lining the walls, a computer table on one side, a commode discreetly at the end of the bed, a TV across the room. A beside table held the detritus of illness–bottles of pills, a box of tissues, a statue of the Virgin Mary draped with a rosary, a lamp, a telephone.

But the view from the window–the view of the church beyond my garden, which is the length of a city block, the view of the birds landing in the trees outside my window, the view of the sun setting behind the trees that criss-cross their limbs beyond what I see–that view has sustained me. Not just through that year which turned into three, but this year, and last year, and I hope, next year and more.

It’s very hard, this dying thing. It’s very hard to be ill and know there is no getting better. It’s very hard to know that your grandmother lived to be 96 and your great-aunt was playing Scrabble and walking two miles every day until her 101st year and that you will never be them, you will never even be close. My aunt lived to be twice the age I am now. It’s daunting, infuriating, hopeless.

It’s very hard knowing the writers you knew and loved in the 1980s and 1990s are dead and that was 20 or 25 years ago now and that you are middle-aged but feel terribly old and that the youthful you, the energetic, peripatetic, world-traveling, story-grabbing, running in high heels for a train or a plane you is, and has been for nearly two decades since that particularly crushing diagnosis, dead.

But there is a living you. It’s not the living you that you had hoped to be. It is, to a degree, Donald Hall sitting contemplatively looking out his window at the vista he has known his entire life. Except of course, he has 30 years on you and you know, in your messed up heart and in every difficult breath you take, that another 30 years are not there for you and never can be. There’s no deal with the devil that will change that.

*

In her declarative essay, “Illness as Metaphor,” theorist Susan Sontag wrote about what we think illness is, as a society. She also wrote in other essays about AIDS and pain and how we see things.

I find illness is a metaphor for people who aren’t ill. Flaubert, Proust, Tolstoy, Fitzgerald, Hemingway–those greats all deconstructed illness and accident as metaphor. But they were all perfectly healthy when they did so.

Write from the place of illness and you get something altogether different, as O’Connor’s “Wiseblood” proves. You get a somewhat twisted and gothic version of life.

Hall’s lyric reminiscences, for example, are not clouded by a fight to stay breathing. One can tell from this essay that he has not given up, but neither is he fighting the inevitable. But then he is in his mid-80s, not mid-40s like his wife, or mid-50s like his father–or me.

*

Not wanting to die can consume you. It consumed David Wojnarowicz–writer, artist, filmmaker, activist–when he was dying of AIDS. It became hard to be around him, his anger and bitterness was so great. I think about David a lot now–how fierce his talent was, how brave his brutal monologues were, how none of us should have dared to be annoyed with how he was because we weren’t where he was–imprisoned by the knowledge that death was coming, death was right there, death was tapping, tapping on the window, staring him down and that there was never going to be another chance to choose the road not taken because time was up, all the metaphors had run out. This was real. Soon he would be dead and there would be no more words.

Many days not wanting to die consumes me, also. It consumes me as I struggle for literal breath, as I try to make arms and legs work that are confused about their purpose, because my brain is being stripped of the protective myelin that makes everything function. Not wanting to die consumes me as my heart races irregularly like a fallen athlete’s, even though I am not running or dancing or riding my bike as I used to do every day, but just sitting, reading or writing or staring out the window like the 80 something Donald Hall. It consumes me for reasons similar to Wojnarowicz’s–I am enraged by the impending loss and the invisibility of my suffering.

When I say “my” suffering, I mean my kind of suffering–the suffering of people without money and influence and a means to stop what is happening. When I was faced repeatedly with the deaths and dying of my gay male friends from AIDS, I was furious most of the time. We lived then with a sense of urgency, as if everything we said and did was like our lives depended on it–because it did.

Life is different in one’s 50s than in one’s 20s and 30s. We know more, we know about inevitabilities. But we also know about the breadth of injustice. We know that fighting is imperative, even if we don’t feel like it.

I don’t feel like it, but few days go by when I am not writing about the interconnectedness of being poor, a minority and sick in a nation that values wealth and health and turns its back on everything else.

As I lay in ICU in November, I was on the telephone with my insurance company, arguing that they had to pay for my oxygen–which is, after all, air–while they explained that health care reform had a clause that meant they no longer had to. Throughout January, I fought to get my lung infusions paid for–they cost $400 every six days–and am still fighting. I can’t get a new, motorized wheelchair because it’s no longer covered. I reached the lifetime limit for physical therapy in 1996, but I am still alive and my legs still don’t work like my old legs.

The Kafkaesque nature of dealing with illness and all its ramifications is a daily revisiting of the surreal. Who can write under these circumstances? And yet we must.

Even when we do, however, what is the venue for the outrage that wells up and spills over because we know we deserve more and better and should be able to tell our stories and have them heard? Where can we write out our rage and pain, give voice to the rage and pain of others suffering as we are, but unable to articulate that suffering? AIDS is not over, the lesbian cancer epidemic is not over. The Secretary of Health and Human Services was just here in Philadelphia this week at an LGBT health conference. One of the lesbian speakers noted that we have no data about lesbians and cancer–we just know that they get it more than other women do. We don’t know why, but no doubt being queer and female in a sexist and homophobic society is a factor.

*

With writing comes responsibility. Darrell wanted to tell the story of the gay men who weren’t all white and upper-middle class and privileged enough to say so blithely that “it gets better,” because for them it never did.

More than a decade ago, I compiled the first book on the lesbian cancer epidemic. But how long had we been dying at that point? Even as I write this, a tumor sits in my right breast. It’s not too big and growing slowly, which is good because it can’t be removed right now because my lungs are too fragile–I won’t survive the anesthesia. But the cells sit waiting, I sit waiting.

I understand Wojnarowicz’s anger now like I never did when he was alive. Because I was healthy when he was dying. And now…

I am far from the only lesbian with cancer or MS, a heart problem or chronic lung disease. I am not even the only lesbian battling all of that at once. The chronicle of our lesbian, gay and transgender health crises is inextricably linked to sexism and homophobia and yet: Where is the story? Why are we so invisible? Still.

It was over 25 years ago when I was dancing with Audre Lorde and feeling the absence of her one breast as she pulled me close. It was 20 years ago when Larry Kramer was telling me that we had already become complacent, but that he was still HIV positive and he was not going to be complacent. It was ten years ago that Tee Corinne told me that she thought she had liver cancer because being a lesbian in the straight world had challenged her body in ways straight people’s never were.

Yet we act, collectively, as if all of this is over. But these diseases are so not over.

Why has our own community–which has embraced mainstreaming to such a degree that it ignores the reality that many of us are poor, sick, barely making it–why has that community refused to acknowledge the reality that we are being crucified by both political parties, that Obama is not even remotely our friend, that being a queer Republican is an oxymoron, that our so-called queer leadership can’t even get out a press release ontime, that we have only three issues we discuss: marriage equality, military equality and the bullying of our teenagers.

What about the rest of us? What about those of us clinging to life as second-class citizens who can’t access any of the rights every straight person takes for granted?

In the throes of the AIDS crisis, we were lying in the streets. Die-ins were the norm. We were queer activists, we outed people, we refused to be silenced because silence, we screamed, equaled death.

When did we walk away from that activist construct? When did we begin to listen to upper-middle-class queer conservatives like Andrew Sullivan who first told us that AIDS was over because he was still living with the disease and now tells us to quit our whining about Obama because as a conservative, he can embrace him–torture, gutting the Constitution, failure to evolve on our civil liberties and all.

When did we stop fighting the system that oppresses us and decide we wanted to be part of it, instead? When did we decide to embrace our oppressors in the hope they would like us or invite us to a White House dinner or just not kill us?

I remember well how people were irritated by Wojnarowicz’s rage as he was dying. Yet one wonders, inevitably, if it’s that rage that Dylan Thomas writes of, against the “dying of the light,” that refusal to “go gentle into that good night” that propels us forward when we are dying, be it slowly or quickly. It’s hard not to realize that Wojnarowicz, who blazed hot to the end, has had his work revived and kept alive, even though it’s 20 years since he died. In 2010 one of his works was censored–that’s how far and not far we have come from that time in our collective community response to the diseases that kill us.

I wanted to write about many different things in this essay. I wanted to write about how hard it is to fight every day against the failure of the body and how it constricts and restricts one as a writer, even as it informs one’s writing.

I wanted to memorialize my dead writer friends–Darrell, Assotto, Essex, Steve Corbin and Marlon Riggs, Joe Beam and Donald Woods–because sometimes it seems like we’ve forgotten what happened in those years.

I wanted to write about the view outside my window, the passing of the seasons, the imperiling nature of pain, the fractiousness of outrage, the shattering knowledge that death hovers ever closer with each new diagnosis.

I wanted to write about how death stalks us in myriad ways–it directs and redirects our energies, even if we do not recognize it.

I wanted to write about what it means to be a survivor, even if that survival is tenuous at best.

I wanted to write about what it feels like to still be alive when so many people you loved and admired are long dead.

Illness is a metaphor–I agree with Sontag on that. But illness is also real, not just a literary construct or artistic conceit. It’s a battle, for those of us who are ill, and with so much illness in our community, the silence seems, to me, to be deafening. And deadly.

The straight world is not going to write about us. Whether we want to believe it or not, at best they tolerate us, at worst, they’d like to see us put down. There is a archive of our struggles between 1985 and 1995. Where is the archive of our struggles since? AIDS is not over for the poor or people of color. Cancer is not over for lesbians. All queers are not wealthy white guys for whom things got amazingly better. We lost a generation of artists and writers as well as just plain folks. We ran into the arms of assimilation and never looked back, but that means we left our identities–our true, honest, queer, not straight-acting or straight-looking identities–behind.

Illness can indeed be metaphor. Our community is sick: we lack leadership, we have subverted our collective voice, silenced ourselves. We ache for grudging acceptance instead of being in-your-face, deal-with-us demanding as we were two decades ago. We’ve narrowed our vision of queer future to what straight people have that we don’t. We should want more. We must want more.

Yes, illness is metaphor. But as I sit writing this from my bed, the pile of pillows behind me, I know how urgent it is that we not give in to metaphor. And that we get those last words–even if they are the screams of the dying–down before we succumb.