Stuff. Changes now and then.
Brian Malloy talks about his new novel, After Francesco.
Why revisit the early years of HIV/AIDS in Gay America?
I wrote After Francesco because as we approach the 40th anniversary of the first Center for Disease Control report on what would become known as AIDS, the pandemic - as my generation of gay men experienced it - is becoming a footnote in some histories, and completely absent in others. The contemporary fiction by gay authors of the time is largely out of print, books like Facing It by Paul Reed, Eighty-Sixed by David Feinberg, and The Body and Its Dangers by Allen Barnett. The gay writers we lost to the disease leave behind a legacy of what might have been - had this country decided that the lives of gay men mattered, had it dedicated the resources necessary to fight the crisis as it had done with Legionnaire's Disease and Toxic Shock Syndrome. I imagine the body of work created by Reinaldo Arenas, Christopher Coe, Steven Corbin, Melvin Dixon, John Fox, Robert Ferro, Bo Huston, George Whitmore, and many, many others, had they lived. Had their own government and so many of their fellow Americans not turned their backs because they were gay.
As many continue to turn their backs today, because this pandemic is NOT over. As University of Pennsylvania professor David Barnes has said: "There's never been a society that hasn't moralized disease, ever."
And to be honest, I wasn't ready to write about it any sooner. The distance of time made it possible, along with age: I'm in my 60s now.
Is After Francesco the sequel to The Year of Ice?
While both novels are told by Kevin Doyle, the protagonist, at different times in his life - The Year of Ice in 1978; After Francesco in 1988 – After Francesco is a stand-alone book. It's not necessary to read The Year of Ice to understand any of the events or characters in After Francesco.
Then why have Kevin tell the story?
Rather than write an AIDS novel with new characters, I decided to revisit characters some readers know from the time before AIDS. Knowing who characters were before the pandemic was important to me, because my generation had many of the same dreams that young people today have, but then those dreams became a singular and desperate hope for a treatment that came too late for hundreds of thousands of gay men in this country.
Christopher Bram said that you weren't afraid to be funny in After Francesco. Why not?
Chris did say that, and I'm honored, because I have so much respect for him as a writer.
As a reader, I crave books with emotional range. I need to laugh as well as cry. If a book is beautifully written, but all heartbreak and existential angst, my eyes glaze over. There are exceptions of course: The Hours by Michael Cunningham never made me crack a smile, but I found the novel a rewarding and immersive experience as a reader, and I revisit it often to see how a beautiful sentence is written. Still, my strong preference is for novels like The Heart's Invisible Furies by John Boyne – there is such a wonderful emotional range to that work.
Did you write from your own memories, or did you research?
I reread novels from my bookshelves that are contemporary to the era, for example, People in Trouble by Sarah Schulman, In Memory of Angel Clare by Chris, The Irreversible Decline of Eddie Socket by John Weir, and Eighty-Sixed by David B. Feinberg.
I also reread nonfiction from the era: Borrowed Time by Paul Monette, And the Band Played On by Randy Shilts, Reports from the Holocaust by Larry Kramer, Ground Zero by Andrew Holleran, How to Have Sex in an Epidemic: One Approach by Richard Berkowitz and Michael Callen, and The Screaming Room by Barbara Peabody.
Finally, I re-watched David France's much more recent documentary How to Survive a Plague, and my copy of his book of the same title is completely marked up with my notes. When my husband and I first watched the documentary, he turned to me and said, "I think we must have PTSD." Until watching How to Survive a Plague, I hadn't thought about that time in my life for years, and with this film it all came flooding back. I can't recommend the book or the documentary highly enough, they were the catalysts for me to finally write After Francesco.
Also, part of my approach to writing After Francesco was to examine depictions of characters and people with serious illness in both fiction and popular nonfiction. From my own experience with Stage IV cancer, I agree with Arthur W. Frank, who wrote in The Wounded Storyteller: Body, Illness, and Ethics, "Serious illness is a loss of the destination and map that had previously guided the ill person's life: ill people have to learn to think differently. They learn by hearing themselves tell their stories, absorbing others' reactions and experiencing their stories being shared."
Frank describes three primary illness narratives: 1) restitution (the ill anticipate getting better and focus on treatment and medicine), 2) chaos narratives (the ill suffer and do not reflect upon their lives), and 3) quest narratives (illness affords the ill transformative and life-changing insights).
In her essay, Illness as Metaphor, Susan Sontag writes, "I want to describe… the punitive or sentimental fantasies concocted about [illness]. My subject is not illness itself, but the uses of illness as a figure or metaphor." Sontag argues that it is impossible to be ill and "unprejudiced by the lurid metaphors with which it has been landscaped." In my own review of writings on and about illness (both literary and popular), I have found, like Frank and Sontag, recurring themes and characterizations.
These themes and characterizations can be boiled down to the Three W's: Weakness, War, and Wisdom.
Weakness narratives neatly distinguish the ill from the well, congratulating the well for their health by blaming the ill for their condition. The weak will, obsessive personality, or corrupt or lazy mind is manifested by a decaying body. It can be argued that Thomas Mann's novels The Black Swan and Death in Venice connect emotional disorders -- such as obsession, denial, and repression -- with disease and death. In The Black Swan, an older woman's hopeless love for a young man convinces her that she has begun to menstruate again. But in truth, a cancerous hemorrhage is responsible for the blood. The cancer illustrates her preference for fantasy over reality and her zealous denial of growing older. In Death in Venice, an older, repressed scholar's obsession with a beautiful young man, ultimately results in his death.
During the early days of the AIDS pandemic, "self-healing" and courses in "miracles" became enormously popular among gay men with AIDS since little else was available to treat them. This proved exceedingly profitable for writers like Louise Hay, who told AIDS patients that their illness was a manifestation of emotion, and described their symptoms as metaphors. In his poem Manifesto, Paul Monette argued that the Hay phenomenon was sapping the gay community of its political will to fight for education, research, and treatment:
every sucker in the ICU's to blame see
there are no microbes just self-loathing come
sit in a ring with St. Louise and deep-throat
your pale sore body lick your life like a dog's
balls and repeat I AM A MIRACLE
…the boys at Mrs. Hay's haven't an anarchist
bone in their spotted torsos miraculized
Still, the connection between disease and character has captured the public's imagination, largely though popular self-help books like Love, Medicine & Miracles by physician Bernie Siegel.These inspirational books – often written by doctors – chronicle the spontaneous remissions that the authors attribute to laughter, prayer and willpower. Likewise, patients without willpower and faith give in to their illnesses, embracing death. Dr. Siegel writes that "happy people don't get sick" as he coins a new term, the "cancer personality," which finds its fictional presentation in works such as The Black Swan.
While Dr. Siegel and Louise Hay may be written off as pop culture quacks, they have allies in accomplished writers like Katherine Mansfield. Sick with lung disease, she wrote in her journal that she must heal herself, and chastised herself for having an uncontrolled mind.
I reject the Weakness metaphor. It implies divine judgment, which, as an atheist, I reject. It enables a self-righteousness among the well, particularly during times of crisis, as in the early days of the AIDS pandemic.
The War metaphor is perhaps the most obvious and popular of the three W's. Obituaries commonly open by stating that the deceased fell after a "courageous battle" with illness. Sontag noted that the War metaphor originated in medicine when bacteria were first described as invaders. The War metaphor places illness in the context of combat and casts patients as soldiers and physicians as generals. In this model there are victors or those who have been killed in action. There is the violent imagery of combat: scars, blood, and limbs and organs removed from the body. Illness is an invading army, wiping out the indigenous population.
In The Cancer Journals, Audre Lorde writes of the year between her breast cancer diagnosis and her mastectomy: "This year between us was like a hiatus, an interregnum in a battle within which I could so easily be a casualty, since I certainly was a warrior." Lorde encourages women who have undergone a mastectomy to bear their scars proudly like the warriors she considers them to be. In her memoir, The Screaming Room, Barbara Peabody equates AIDS with war. "AIDS is constant warfare, an unending siege. The patient is like a small, weakly defended country surrounded by mighty powers. It fights fiercely to defend itself from invasion, but its weapons are few and primitively inadequate." In her poem Oncological Cocktails, Bonnie Andrews writes:
army of metastasizing cells
advances, armed and dangerous.
While war is an understandable metaphor given that both war and illness kill and maim, I don't employ it myself. It was my body creating abnormal cells, they are not bullets fired by an enemy. I didn't view my own body as a war raging beneath my skin.
Like Frank's quest narrative, the most positive depiction of serious illness in literature is that of personal reckoning. The ill grow wise with a hard-won knowledge born of honest reflection upon their lives. In the day-to-day world, this sort of reflection can be viewed as narcissistic and unproductive, but with serious illness, permission is granted to soberly review one's life, to rearrange one's priorities, and come to conclusions that, in other circumstances, risk embarrassing melodrama. As Virginia Woolf writes in On Being Ill, "There is, let us confess it (and illness is the great confessional), a childish outspokenness in illness; things are said, truths blurted out, which the cautious respectability of health conceals."
In Brendan Wolf, I incorporated the illness-as-reckoning narrative: Marv's debilitating stroke is a condition that literally and figuratively sobers him up. This leads him to regret past mistakes, and ultimately, to claim his identity as a man in spite of his generation's construction of gay men as something other than male.
Ted Kooser's poetry collection Winter Morning Walks: one hundred postcards to Jim Harrison, written while he was being treated for cancer, illustrates wisdom and humility born of reflection, and was a revelation to me while I was undergoing therapy.
In many narratives, once reckoning has been completed, the ill dispense their wisdom to the well. The bestselling Tuesdays With Morrie compares the terminally-ill Morrie to a cross between a biblical prophet and a Christmas elf as he educates a young sportswriter as to what is important in life (it's love). While some may dimiss the book as a sappy read, Tuesdays With Morrie offers a refreshing alternative to the Weakness and War narratives.
Wisdom is also the most appealing of the three W's, but it is a moving target in After Francesco. There are days of crystal clarity and insight, others of murky confusion and despair.
Sontag argues that "the most truthful way to write regarding illness – and the healthiest way of being ill – is one most purified of, most resistant to, metaphoric thinking." Anatole Broyard, however, sees some benefits. Broyard writes that while Sontag "is concerned only with negative metaphors, there are positive metaphors of illness, too, a kind of literary aspirin. In fact, metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his bathrobe and slippers. At the very least, they are a relief from medical terminology."
I'm with Broyard. Without metaphor, my cancer would have had more, not less, power, due to my unfamiliarity with it. True, some metaphors are harmful (illness as individual failings manifest), or occasionally absurd (a book for people with cancer encourages them to think of their chemo drugs as tiny Charlie Chaplins pushing brooms that sweep up all the mutated cells), but there is no better method to make the unfamiliar familiar.
Real people make appearances or are alluded to in After Francesco, including Keith Haring, Ru Paul, Peter Staley, and Hilton Kramer. Did you know them at the time?
No. While I did go dancing at the Pyramid Club, I don't remember seeing Ru Paul there, and he is someone you're not likely to forget. I never met Keith Haring, and Hilton Kramer I only discovered as I was researching the New York art scene of the 1980s.
Peter Staley and I attended the same high school, but there were hundreds of students, and he was a year or two behind me. I have no memory of having met him, but then, I choose not to remember that time, which was a painful one – my father died after a long and debilitating illness when I was 15. We had moved back to Pennsylvania from Michigan so he could be near his family at the end.
Real events are depicted in the book, including the first Minnesota AIDS Walk, the 1987 March on Washington for Lesbian and Gay Rights, ACT UP's actions at the FDA and Trump Tower, and the Tompkins Square Park police riot. Did you witness these events?
I worked at the Minnesota AIDS Project in the 1980s, and recruited and coordinated volunteers for the state's first AIDS Walk. Just like in the book, we had no idea how many people – if any – would show up. It didn't occur to us to do pre-registration, and we had no Plan B in case it rained. We were just passionate people doing the best we could. Like Brian in the book, I told the event volunteers to pretend to be walkers for the media in case no one turned up. Fortunately, that first Walk turned out as depicted.
Are you the Brian in the book?
A fictional version of me. While my grandfather was from Enniskillen, my parents were not. My Dad's from West Passyunk, and my Mom's from Kingsessing, both neighborhoods in Philly. The capital of the Malloy family empire was Malloy's Bar, at the intersection of Point Breeze and Mifflin.
Were you at the other events depicted in the book?
I was a volunteer with the Minnesota March on Washington, raising money for Minnesotans with AIDS to go to the 1987 March on Washington for Lesbian and Gay Rights. I also attended it myself. It was surreal and empowering to be in the majority for the first time in my life. It broke my heart to go back to life as usual.
While I did stay on Avenue B when visiting my friend Steve after he moved to Alphabet City, I wasn't there during the police riot. And while I did participate in some ACT UP actions, I wasn't at Trump Tower or the FDA. My most vivid ACT UP memories are of the die-in in front of the White House, and picketing Sam Kinison's appearance in Minneapolis, where some of his fans laughed, telling me I'd die of AIDS soon. Joke's on them: Kinison was killed by a drunk driver at the age of 38, and here I am.
Are you living with HIV?
No, I'm negative. My first HIV test was in 1985, and just to get the test, I had to lie and say a lesbian friend and I were planning on having a baby. Back then, it was felt there was no point in knowing your status, since there were no treatments.
If there were no treatments, and you had to lie to get the test, why did you want to know your status?
It was a different era, and I didn't want to put my family through what I believed would be an agonizing death, like my father's. In 1985, not enough time had passed to understand there would be long-term AIDS survivors. I was working in Amsterdam, and my plan was to disappear and not return to the U.S. if I tested positive. Fucked up in retrospect, particularly given the accuracy of HIV tests at that time, but it was my reality at that moment in my life. It was what it was.
The book touches on conspiracy theories of the time, that is, that the American government created the disease, and/or did nothing to prevent the deaths of gay men. Aunt Nora even draws comparisons between AIDS and the Irish potato blight. Do you credit these assertions?
Well, let's start with the potato blight. Academics like Charles Rice and Francis Boyle concluded that "the policies pursued by the British government from 1845-50 in Ireland constituted 'genocide.'" Former New York Governor George Pataki said "History teaches us the Great Irish Hunger was not the result of a massive failure of the Irish potato crop but rather was the result of a deliberate campaign by the British to deny the Irish people the food they needed to survive." Then there are the words of Charles Trevelyan himself, the British official in charge of famine relief in Ireland: "The judgment of God sent the calamity to teach the Irish a lesson, that calamity must not be too much mitigated . . . the real evil with which we have to contend is not the physical evil of the Famine but the moral evil of the selfish, perverse and turbulent character of the people."
The British Empire did not round up their Irish subjects and send them to death camps, but they did dispossess them of their land, language, and culture, leaving them impoverished and surviving off a subsistence crop that failed for years, killing over a million Irish men, women, and children, and launching the Irish diaspora. There's no doubt in my mind that taken together, the British Empire committed crimes against humanity in Ireland, but these crimes are not taught in history books, particularly in the United Kingdom or United States, where you'd be hard-pressed to find any mention of the blight at all.
Likewise, the American government did not send gay men to death camps, as Nazi Germany did to its gay citizens. But some of us did believe it was genocide, none-the-less. POZ editor Trenton Straube wrote that "Already in 1983, some members of the gay community in the U.S. had accused the federal government of constructing the virus in order to kill off gay Americans. This came at least partly in response to their frustration with decades of discrimination, the accelerating death toll from HIV/AIDS, and the lagging, at times callous, response of the Reagan Administration to the pandemic."
There are strong parallels between the Irish potato blight and the first decade of AIDS in America, the strongest being the sheer number of deaths, along with the popular characterizations of the afflicted. Anti-Irish and anti-gay bigotry enabled governmental neglect and inaction. Who can't see similarities between the non-response of the American government to AIDS and Trevelyan's depiction of the blight as God's judgement on the moral evil of the perverse Irish? If you read Cardinal O'Connor's statements about gay men in the 1980s, you'd swear he was Trevelyan reincarnated.
Assisted dying (also called assisted suicide) is discussed in the book. Assisted dying is now legal and regulated in Oregon and Washington. Do you believe it should be expanded to the rest of the country?
People have a right to determine how to live their lives, so long as it does not infringe upon the rights of others to live theirs. I want a choice about what I am willing to do to extend my life. I was diagnosed with Stage IV cancer when I was 44, and I came to two conclusions: 1) I decide what I am willing to endure, and 2) Bernie Siegel can shove Love, Medicine, and Miracles up his ass. I find his pronouncements, along with those made by Louise Hay, to be moralizing disease and life-threatening conditions. Stop blaming people for dying, it's not a character flaw or a moral failing.
Is Francesco based on a real person?
My roommate Paul did his best to help me appreciate modern art, and while I love his work, I really didn't understand some of the crap I saw at places like the Walker Art Center. I witnessed Paul's experiences of trying to make it as an artist. I clearly remember his disappointment and hurt at not being selected to exhibit at the Minnesota State Fair. When we went to pick up his paintings at the Fair Grounds, it broke my heart a little. He was so talented, and it was going unrecognized and unappreciated. His parents let me keep a couple of his works, a painting of an angel which could be a self-portrait, and a vessel that depicted contentment on one side, rage on the other.
Our relationship during the last months of his life was challenging for both of us. His world had been reduced to the apartment, waiting rooms, and hospital rooms, and I could be worthless and overwhelmed at times. We did love each other, though we were never lovers. I had met my husband by that time. Paul was one of my last friends to die of AIDS. He passed away in 1991 in our home. I didn't go to another AIDS memorial service until 2003, when Carlton Hogan died.
What's your opinion of recent AIDS Generation novels by heterosexuals - The Great Believers and We are Lost and Found – and the resulting controversies over "appropriation"?
I haven't read either book. I have read Kayla Whaley's Own Stories essay in which she stated that "Time and again, marginalized people have seen their stories taken from them, misused, and published as authentic, while marginalized authors have had to jump hurdle after hurdle to be published themselves. Many feel they must fight to receive even a fraction of the pay, promotion, and praise that outsiders get for writing diverse characters' stories, and that's when they're allowed in the door at all."
That certainly has been my experience. After Francesco did not sell at auction like Helene Dunbar's book, and I could not get in the door at "The Big Six" like Rebecca Makkai because I wasn't able to find an agent to represent the work. Is it coincidental that the advances for my novels with gay protagonists total a combined $16,000, while my 1 novel with a heterosexual lead got a $20,000 advance?
Publishers have a long history of shutting out people like me, and when gay characters were included, it was through - and often continues to be through - a heterosexual lens. Most often gay characters committed suicide, or were killed, killers, sexual predators, or a plot twist. "Bury your gays" was mainstream publishing's mantra for generations.
More recently, the trope is the sassy gay BFF who dispenses advice and bitchy witticisms to heterosexual leads, or the tragic faggot whose grisly death-by-hate-crime teaches the heterosexual leads an important lesson about our common humanity. My husband and I recently watched War of the Worlds on EPIX. The briefly-featured lesbian character kills herself, and the gay son dies early on so his divorced parents can unite in their grief.
It's a credit to my community that we created our own small publishing houses, like Daughters, Inc., which published Rita Mae Brown's Rubyfruit Jungle in 1973, Gay Sunshine Press, which published Now the Volcano: An Anthology of Latin American Gay Literature in 1979, and Persephone Press, which published Zami: A New Spelling of my Name by Audre Lorde in 1982. Who sold these works? Small, independent, gay and feminist bookstores like Giovanni's Room in my hometown of Philly, and Amazon bookstore (no, definitely not THAT Amazon) here in Minneapolis.
I don't doubt that The Great Believers author Rebecca Makkai and We are Lost and Found author Helene Dunbar are aware of the marginalization of LGBT writers, and I've read their responses to criticism of their books. Makkai has candidly stated "It's about gay men; I'm a straight woman. It's about HIV/AIDS; I don't have it. The story begins in 1985 Chicago… I was born in 1978 and spent 1985 reading about dinosaurs." She has also stated, "I don't need to apologize for writing across difference; I need to apologize if I get it wrong." Dunbar tweeted, "…there are currently NO YA books about this time in this context. I am not taking space from a gay male author. Feel free to write one. Seriously. Teens today need to know what it was like."
At the end of the day, I'm old-school. Write whatever you want, just make sure you've done your homework and that its well-written. I didn't fight to be included just so I could exclude others. I don't want Makkai or Dunbar canceled. I do want to be taken seriously as a gay writer who writes about gay men. I want editors to ask themselves: Do we publish works about gay men by gay men?
Take a look at the booming Male/Male romance genre – written by straight women for straight women. My fear is that gay men – in particular, white gay men - are becoming the Ken dolls of commerical fiction, playthings, characters without agency, viewed almost exclusively through the lens of white heterosexual women.
Everyone's entitled to their own opinion, and to boycott whatever or whomever they please. What we're not entitled to do is demand censorship of writers who offend our sensibilities. Object to their work, not their right to create it. Object to their opinions, not their right to express them.
The current atmosphere of de-platforming authors, and threats of violence at readings, may well result in publishers and universities limiting who gets the page and the stage due to fear of offending the mob. That puts us all at risk for bland, mind-numbing stories and speakers we've no interest in reading or listening to. It puts at risk the next generation of gay writers who write about gay lives, and who only recently have begun to be both published AND promoted by major houses, writers like Ocean Vuong (published and promoted by Penguin) and Saeed Jones (published and promoted by Simon & Schuster).
So, writers, write whatever you want. And publishers, value the importance of the AIDS Generation – like all survivor groups – writing our own stories, for the simple fact that we lived them. Rebecca Makkai and Helene Dunbar did not. I'm sure they did good jobs with their subject, but they didn't live it. I know that sounds like an attack, but it isn't. It's simply the truth. Anyone can write about the Hmong refugee experience if they want, but to experience it through the lens of someone who truly understands it, read Kao Kalia Yang.
What advice would you give young activists?
Recognize that climate change is your AIDS, and act accordingly.
It will require behavior change on a vast scale, in all aspects of our daily lives, and we face a well-financed opposition to this behavior change. With AIDS, there's a financial incentive for pharmaceutical companies to treat the disease, at least in the West. With climate change, the fossil fuel industry, OPEC, and the governments and politicians in their pockets will fight hard to keep their trillions.
With HIV/AIDS in the 1980s, there was the life-and-death immediacy that was real and concrete. A diagnosis most often resulted in death in under 2 years. Climate change is more like the smoker promising himself to quit one day. Or the smoker who thinks you've got to die of something, so why not this? We are addicted to fossil fuel and beef. Addiction is tough to beat, but it can be done.
Advice for the yet-to-be-published?
Put time to write in your weekly calendar, and treat it like an appointment with a medical specialist you have been waiting months to see.
Don't wait for the muse. If you're stuck, write about what you would write about if you could write about it. That will get the keyboard clicking as you summarize your ideas, and list questions you need answers to in order to flesh out the story and characters. Research will lead to more ideas.
Turn off the editor and the critic. The first part of the process is generating raw material. If you don't do that, you won't get to the next part of the process. Honor the process by starting at the beginning: get words on the page without judgment.
Needles & Lies
(Originally published in OUT, April 2005)
Today begins with a muscle relaxer. It’s surprising how much this needle hurts, surprising because it’s simply the latest in a series of needles. As with bee stings, I expect each new penetration of the skin to feel like the one before it, yet there are differences, and whether they’re a result of the needle’s diameter, the nurse’s skill or the site of injection, I can’t say. Before this needle there were the needles to draw blood, inject contrast dyes, and retrieve tissue samples which were then delivered to the laboratory for testing and diagnosis.
Of all the needles, I remember the one used for the spleen biopsy most vividly; it was this needle that submerged beneath my skin like a submarine, only to swiftly resurface, bringing the mutated cells into the unwelcome light of day. The doctor performing the procedure asked me, while I was laid out on the operating table, what my own physician had suggested as the likely cause of the symptoms I had been experiencing, the discomfort and the pain.
I told him, “He said I could be recovering from an infection, or maybe my lymph nodes are simply larger than normal. He also said it could be lymphoma.”
I couldn’t tell what expression the doctor wore behind his mask, but his tone was matter-of-fact. “Oh, it’s cancer. You have lymphoma.”
They can’t anesthetize bone of course, so after the muscle relaxer has begun to do its work, they administer the minor, nimbler injections that numb skin. Marrow will be extracted from two sites on either side of the small of my back. I sense that Terry, my partner of sixteen years, is growing tense as he waits for the doctor to tell him to leave the room so they may continue. Terry asks, “Should I go now?”
This doctor says, “No, you can stay.”
I say, “Why don’t you leave? I don’t want you to see me cry like a little girl.”
The doctor and nurse laugh and Terry gets up, tells me he’ll be right outside in the waiting room.
The doctor instructs me to close my eyes and rest my head in the crook of my arm. He says, “Deep breaths. Breathe with me, in and out. In…and out.”
Needle is forced through bone. This isn’t what causes the pain, it’s the moment when the plunger is lifted and the marrow is drawn up and out. It’s for this moment that I received the muscle relaxer: there’s no medical reason for it, apart from preventing me from jumping off the table, screaming, a needle sticking out of my back like a hunter’s arrow.
The team moves on to the other side, extracts more marrow and a core sample. In a few days my oncologist will tell me that the cancer has breached the deepest recesses of my body. I will officially be in stage IV of non-Hodgkin’s Lymphoma, which, like all cancers, does not have a stage V. There will be some comparatively good news, however: My type of cancer grows very slowly, and, statistically speaking, over half of non-Hodgkin’s Lymphoma patients live for five years after diagnoses.
The doctor finishes collecting his samples and congratulates me on my courage, but really, what other option do I have? Being courageous, being afraid, neither of these things will change the facts, and truth be told, it’s easier to be courageous, easier on the people around me, easier on myself. I simply don’t have the energy to be frightened, it smacks of an effort I’m unwilling to make. I politely thank the doctor and nurse as they leave me to recover in my own way.
Days come and go, punctuated by appointments and tests and procedures. Today, for example, I have monocelluar immunotherapy, a.k.a. chemotherapy. Terry and I pass the Virginia Piper Breast Cancer Unit on our way to the chemo ward and through the windows I see the tasteful library, the coffee served on real china, the thick, terry cloth robes and fluffy slippers worn by patients. They should stick a Post-It note on the door to the Piper Unit with the words “All Other Cancers” scrawled across it, along with a crooked arrow pointing in the direction of General Oncology, my destination.
My unit more closely resembles an airport gate prior to departure. Often Terry and I can’t find seats together and there is always a line for the bathroom. At first I was horrified, but then I thought: Do you really want to walk into an oncology waiting room that’s empty? And besides, now that I’m a veteran patient, the waiting room doesn’t bother me anymore. I no longer envy the women in the Piper Unit because the hustle and bustle of general oncology has its own peculiar charms. Here we swap prognoses like recipes, we study the pamphlets and brochures that are meant to empower, inform, comfort. One booklet tells me: “Don’t blame yourself for your cancer. Some people believe they got cancer because of something they did or did not do…Remember, cancer can happen to anyone.” Just once, I want to pick up a flyer that says, “Boy, did you fuck up. If you had only been a kinder, more generous human being, this never would have happened.”
My name is called. It’s time for a new needle, for the new IV drip that will deliver the liquid Benadryl, which tempers my allergic reaction to the Retuxin, the drug that I will receive for the next four or five hours. I open a book as the vein is prepared and Terry turns on his laptop, beginning his day’s work of volunteer management. I was never much of a reader growing up – I didn’t fall in love with books until I was in my mid 20s – but now, in my 40s, I read more than I ever have. And although I have many assigned texts as a graduate student, I rarely bring these with me to chemotherapy. Instead, I revisit old favorites as I sit in a recliner, one of nearly forty that circle the nurse’s station.
Today I’m reading “Family Dancing,” David Leavitt’s debut collection of short stories. I’ve included two of them in a course packet for my own students, and one of these, “Counting Months,” is about a woman named Anna who realizes that six months have passed since her cancer diagnosis, that on the day the story takes place, she was supposed to be dead. I chose this story in June, two months later, I had been diagnosed myself. We will be discussing “Counting Months” in class this week. I find myself returning over and over again to a single passage in the story, in which the oncologist congratulates Anna:
“I think it’s marvelous the way you’re handling this thing. I’ve had patients who’ve just given up to depression. A lot of them end up in hospitals. But you keep an active life. Still on the PTA? Still entering those cooking contests? I’ll never forget those terrific brownies you brought. The nurses were talking about them for a week.”
“Thank you, Doctor,” she said. He didn’t know. All these months she had been so “active,” she suddenly knew for a lie. You had to lie to live through your death, or else you die through what’s left of your life.
I used to find that passage depressing, but with this reading I find it comforting. Anna and I now have something in common. Correcting the syntax in an undergraduate’s short story, cleaning up the shit spread throughout the backyard by three dogs: Before cancer these tasks were annoying, now they’re the little lies that enable me to live through death. They keep the drama at bay; they send casual acquaintances (the ones who want the experience of befriending a Zenlike terminal man) packing.
Like Anna, I also receive praise from others: people tell me how good I look, not like a cancer patient at all, or they gasp in amazement when I tell them I’m teaching during treatment. I’ve learned to ignore the impulse to correct them, to say that I’m not fighting the tide -- rather, I’m drifting along with it. I lie because people are at their most patriotic in the war against mortality, they believe that with the proper attitude it will be the cancer cells that wither and die. I don’t tell them about my experience with the AIDS pandemic, of how it was sometimes the case that passive people lingered on while the go-getters died within weeks of their diagnoses. I don’t believe that we have control over these things. And if I don’t beat the odds, if I do go quickly, I don’t plan to lie on my deathbed convinced that it was a character flaw rather than the cancer that stole my life from me.
Time passes and chemo rush hour begins. At about ten a.m. the short-timers arrive to be hooked up for just an hour or two. There is a steady stream of them throughout the day and they generally come alone, the IV drip now as much a part of their routine as filling the car with gas or paying the bills at the end of each month. Some conduct business on cell phones, others read or listen to headphones as they watch the televisions that are suspended from the ceiling.
I have a good friend who visits every time I’m in the ward. She brings fresh muffins and cupcakes from a bakery on Franklin Avenue, along with gossip and the occasional astute observation. As Terry stretches his legs, she says, “You’ve been keeping a pretty tight lid on all this.”
Her comment surprises me since my diagnosis isn’t a secret. It’s easier to have it out in the open, I have a lousy memory and keeping people in strict camps, those who know and those who don’t, is beyond my mental capacity. I say, “No, I haven’t. People know, it’s nothing I’m ashamed of. And I’m too lazy to protect people from the truth.”
“You haven’t fallen apart,” she tells me.
“Not in front of you, no.”
“If not in front of your best friend, then who?”
I look at her. She is my closest friend; a lesbian mom by design, not by divorce. We’ve known each other for nearly twenty years. I was there when her first baby was born and I’m Uncle Brian to her children. She was there when my roommate died of AIDS, my brother of cancer. She is no tourist in my life. If she wants to know when I hit bottom, she’s entitled. “I was by myself when it happened,” I tell her.
She gives me her look. We both know I owe her more.
“After I found out I thought I had to seize the day, to live life to its fullest. But then I just sat on the couch and channel surfed. And I watched my first episode of Dawson’s Creek and of course one of the main characters dies. It was totally manipulative, they played Jewel in the background and people wept and held each other and analyzed their lives. And I completely fell for it. I just started crying because all through AIDS I’ve been the HIV negative friend, the friend that lives. I don’t want to be the friend who dies. I want to talk about the friend who dies with the other friends that live.”
“I get it,” she says.
I turn back to “Counting Months,” embarrassed. Anna is home and has decided to broil chicken for dinner. She leaves her children to set the table as she heads to the bathroom. Leavitt writes:
Occasional moments it came back to her, and she had to hold on to keep from fainting. Such as when she was sitting on the toilet, in her green bathrobe, among the plants, her pantyhose and underwear around her knees. Suddenly the horror swept through her again…
Hours pass, and the latest needle is removed, the site cleaned and bandaged. In 120 minutes I can remove the dressing and go about my life as if the cancer had never happened. There will still be the pain, the discomfort, but these things can be kept in their proper compartments, isolated from the rest of me, the me with a stack of papers to grade, the me still in love with a man named Terry, who drives us home. There, our three dogs wait impatiently, twitching in anticipation of our return.
Postscript: Brian is in remission.