In the winter of 2005, I started having trouble walking. A blizzard had blown through New York one night, and I had worn a pair of heavy, black rubber boots to the office the next day, the kind that keep your feet dry in the large puddles, moats really, that form at curbs in Manhattan after snowstorms. I initially thought that the boots made walking difficult. My left knee started buckling, and it wouldn’t bear my weight. But a few days later, when the snow had started to melt, and the boots went back in the closet, I still had my leg problem. Then a week later at the Broadway-Lafayette subway stop near my office I had to pull myself up several sets of stairs using the handrail. A colleague happened upon me as I was resting at the station’s mezzanine. When we got to the next set of stairs, and I began once again to hoist myself up, my colleague’s face darkened. “That’s not normal,” she said. “You had better call your doctor.”
My strange weakness baffled my doctor. I was an otherwise healthy, fit, 38-year-old. I had begun my final semester in graduate school. I traveled a fair amount for work. So maybe I was just tired? But that still didn’t explain the on-going nature of my ailment. My doctor sent me to a neurologist, who put me through a series of drills, including closing my eyes and touching my index finger to my nose. But when he asked me to stand on tip-toes, I couldn’t do it.It was such an odd state. Usually, I didn’t even have to think about performing some routine physical action; I just did it.Now, I couldn’t raise my body weight on my tip-toes. I stood there flat-footed, and all the wishing and willpower in the world wasn’t going to change that.
“Mr. Bane,” the neurologist said. “I want you to go directly to the emergency room at St. Vincent’s.Do you know where it is?” He looked at me with a mixture of concern and wariness. Only later did it occur to me that he was weighing whether I would be too scared to go.
Outside on the street, I called my partner David from the vestibule of a convenience market on lower Fifth Avenue, near the neurologist’s office. I called my office to let them know what was happening, and then I walked across 12th Street to St. Vincent’s, then still a hospital in Greenwich Village, where so many gay men had been treated and died, when the AIDS epidemic first hit during the mid-1980s and into the 1990s.
David met me in the waiting room, which lived up to its name. One hour turned into two hours turned into three hours turned into half the night before I saw a doctor. On orders from another doctor, I got a CT scan in the early morning hours, and then the nurses began intravenously pumping me full of steroids. The CT scan came back normal, and the steroids seemed to help my walking. I was released from the hospital the following day, but the cause of my weakness remained a mystery.
Pretty soon, I was using a cane. In February 2005, the monumental public art installation by Christo and Jeanne-Claude, The Gates, opened in Central Park. Orange banners hung from steel braces and lined the serpentine walking paths throughout the park. Despite spending most of my weekends studying for school, David and I carved out enough time to take three long walks through The Gates. We took our cameras with us, and in one instance asked a stranger to snap our photo; this was in the days before selfies with cell phone cameras. In this photograph, unlike some of the earlier photos of David and me, in which we looked like two brothers standing side-by-side — close, but not too-close — we are clearly together as a couple, relaxed, happy, and smiling. All looks well in the picture, except for the crook of a blonde wood cane looped over my forearm.
David and I wouldn’t learn until much later that I one day would have almost no recollection of happily walking through The Gates. We didn’t know it then, but I was already starting to get sick. From February to June of 2005, I have practically no memories, only some vague “senses.” I can, for instance, remember a scene from the last day of walking through The Gates because it snowed. I remember the snow-laden branches arching over the narrow paths around the pond in the southeast corner of the park near the Plaza Hotel. But this is distinct from my “memories” of the large banners that stretched across particularly wide paths. David recalled that I liked these best. But I don’t know if I am seeing these images with my memory or with my imagination, having seen photographs of The Gates and knowing that sunlight streaming through a wide translucent orange banner would be the sort of thing that would please me aesthetically. But given the nature of my illness, the boundaries between memory and imagination are still far from clear.
Through much of the winter and early spring of 2005, I was still working and going to graduate school. And yet mentally and physically, I was closing down. When I started to lose my short-term memory, I eventually left work on disability. During these years David and I continued to live apart, but we still spoke almost nightly by phone. David described how one night we spoke for about twenty minutes, said good night with our regular sign-off — “Sweet dreams” followed by “Tu aussi” — and rang off. A few minutes later I called him back with no recollection of our conversation that had just taken place. My handwriting deteriorated. My even and mostly regular hand regressed to the jerky, jagged, unsure marks of child. In our sex life, I could no longer have an orgasm.
I began making the rounds of doctors, starting with a neurologist at Mount Sinai Hospital in New York. But even as sickness began to overtake my body and mind, my awareness that “something was wrong” had not yet been completely obliterated. David described how one evening at dusk, we walked home to his apartment from Mount Sinai through Central Park. We walked around the reservoir as we had done many times before and admired the last rays of sunlight on the water — red, purple, and gold — dotted by the dark shadows of birds that floated on the water’s surface. In the distance, the skyscrapers of midtown Manhattan were just coming alive with lights. I started to cry. “I’m afraid that I can’t make new memories with you,” David reported me as having said.
Then, I had a seizure. I was living at David’s full-time now because I was afraid to live alone. David had made a business trip that day, Tax Day, 2005. I still was not working, but a colleague had come over for lunch. While eating my tuna fish sandwich, I convulsed in a seizure. My colleague’s daughter had suffered a seizure as a baby, so she knew just what to do. She turned me on my side and made sure that there was nothing in my mouth. When I came out of the seizure, an ambulance had taken me to the hospital, and so began a hospitalization that would last 60 days.
David visited me daily in the hospital. He never left my side, and it’s a good thing, too, because I was profoundly disoriented and often had no idea where I was. At various points, I thought that I was at home in my apartment, at David’s apartment, at the office, at Lincoln Center, in Florida or New Jersey, and once I thought that I was in Australia. I’ve never been to Australia, so the roots of that thought remain obscure. By this time, I could not walk at all and was confined to my hospital bed. Or at least I was confined to my bed in theory. Since I couldn’t remember that I couldn’t walk, I on several occasions tried to get out of bed, once falling and splitting my chin open. I was often afraid of dying or losing my job, and I always wanted to know where David was. If he had been in my room and stepped out to make a call or speak with one of my doctors, I would have no recollection that he had been there. In my disorientation, David reported that I would sometimes forget that I was talking to him, and I would ask him if he knew where David was.
A health care proxy supported David’s position as my defender and ally. That one piece of paper entitled David by law to make medical decisions for me and get medical information about me from my doctors and the hospital. Without that piece of paper, our ten-year relationship may or may not have meant anything in the hospital. Our relationship would have been subject to whatever prejudice we did or did not encounter from the hospital, the doctors, the nurses, or other hospital staff.
In the depths of it, for example, David reported that I was one day the focus of the Chief of Service Rounds, a weekly meeting between senior doctors and medical residents about a particularly mysterious case in the hospital. David described how I was brought into a classroom in a wheelchair, where an old-school doctor examined me and questioned David before his audience of medical residents. As I would learn from my later interactions with this doctor, he was abrupt, dismissive, and as a foremost expert on seizure disorders, used to getting his own way.
He began the examination by questioning David. “And what is your relationship to the patient?”
“I’m Scott’s partner,” David said.
“We’ll say ‘friend’,” the doctor said.
David is a mild-mannered fellow. He favors horn-rimmed glasses and bow-ties. But love in a terrifying situation gives people strength they might not know they had.
“No,” David said. “We’ll say ‘partner.’”
David described how an invisible, but palpable wave of shock washed across the residents. They had infrequently heard anyone — least of all a patient or patient’s caregiver — stand up to the bully of a doctor.
Happily, the doctors who were most involved with me, another neurologist and a hematologist, were equally expert in their fields, but far more grounded and humane. Before I was diagnosed, I was examined, poked, prodded, tested, and questioned by just about every type of doctor imaginable, either to try to diagnose me or mitigate the effects of my deepening, mysterious illness. At various points the doctors investigated: Multiple sclerosis, HIV, testicular cancer, pancreatic cancer, West Nile encephalitis, a brain tumor, and Creutzfeldt-Jakob disease — the human form of mad cow disease — among many others. A brain biopsy loomed on the quickly-advancing horizon.
Yet through it all, parts of me held on, too. Even as the disease ravaged me and my mind, many of my long-term memories remained intact. I could — and did, as David reported — recite the opening lines of Chaucer’s Canterbury Tales in Middle English, which I had been required to memorize for an undergraduate class:
Whan that Aprill with his shoures soote
The droghte of March hath perced to the roote
And bathed every veyne in swich licour
Of which vertu engendred is the flour;
David described how on another night he got into my hospital bed with me and just held me, drawing imaginary patterns with his fingers on my bony back to soothe me. By this time, I weighed 116 pounds down from my typical weight of 145 pounds, because I had such difficulty eating.
But then after one more surgical biopsy, I tested positive for Hodgkin’s disease. I was diagnosed on May 9, 2005, with paraneoplastic encephalitis from Hodgkin’s disease, one day before David’s 53rd birthday. My symptoms — partial paralysis, seizures, and anterograde amnesia — were the result of antibodies that my body had unleashed to fight an early stage of the cancer, but instead had attacked me central nervous system. I was having an auto-immune reaction to cancer. Who knew such things were possible? As David wrote in his daily updates to our family, friends, and colleagues: “Scott never tires of the good news, in part because he never remembers it.” I started to undergo various treatments to neutralize and cleanse the antibodies from my body, followed by the standard treatment for Hodgkin’s disease, chemotherapy followed by radiation.
In June of 2005, once I had started chemotherapy and had been moved to rehabilitation, I started to be able to hold onto my first new memories. I began to remember the names of the some of the doctors, nurses, and therapists who treated me. My main neurologist told me, “Mr. Bane, your hippocampus is working again!” Still, it was a long road back. I had to learn how to walk again. When I got out of the hospital, I used a walker in the apartment and for short distances, and a wheelchair for longer distances.
But the story didn’t end there. In January 2006, a month and a half after I finished radiation treatment, David was diagnosed with colon cancer. When he went for his annual colonoscopy, the doctor found a tumor that had pierced his colon’s wall and infected one lymph node. Because of this infected lymph node, his cancer was labeled stage three, which wasn’t great but wasn’t necessarily a death sentence either. David underwent surgery followed by six months of adjuvant chemotherapy. Luckily, David’s cancer was more straightforward than my experience had been.
But he still had to go through chemotherapy. Every two weeks, David and I headed down to the St. Vincent’s Comprehensive Cancer Center in the Chelsea neighborhood. We would take the eighth avenue subway down in the morning, walk to the cancer center, and go through the same drill: He would get blood work done, see his doctor, and then be ushered into the infusion suite. Each suite was a big open space with three or four industrial-sized recliners. Folding metal arms sprang from the back of each chair, claw-like, at the end of which dangled a small television. The TVs ran continuously, but few people watched them. Next to each recliner, a Baxter Flo-Gard infusion pump stood on a sturdy five-legged stand with wheels. Most people bundled themselves in white cotton blankets that smelled of bleach to try and ward off the chills, a pervasive side-effect of chemotherapy-related fevers. Some people were entirely alone, and patients almost never talked to each other. The cocoon of illness wrapped itself around all the patients, separating them from that seemingly distant land of the healthy.
Mostly, David’s chemotherapy proceeded without incident. Often by mid-day if David didn’t feel too nauseated, I would go out at lunchtime to a favorite Italian sandwich counter and get us mozzarella and tomato sandwiches. One sunny day, walking back to the cancer center from the sandwich counter, I was conscious of being profoundly happy. I have often found that windows of joy open up just this way: Right in the middle of some everyday activity, I’m overtaken by a sense of joy, peace, or contentment. The window often closes up just as quickly as it has opened, and I’m back to being my usual self with my typical aggravations and anxieties. But on that day, along West 16th Street, I, of course, wished that David weren’t going through cancer treatment, but I was glad that our cancer diagnoses at least had been staggered. It could have been worse. We both could have gotten sick at the same time. But mostly, I was grateful to be alive, to have recovered my cognitive faculties, to have enough money to buy delicious sandwiches from a favorite store, and to be sharing all of it with David.
Then a couple of years later, we got married. It was a beautiful day that Saturday in May 2012, the type of day that is so rare in New York during the summer: Clear, warm, and dry. The sky over Central Park was a picturesque blue with only a few small white clouds. My mother and one of my aunts had arrived from Maine the previous afternoon. My father had died when I was in high school, and both of David’s parents also were dead. But David’s brother and his husband, and my cousin and her partner — soon to be wife — had all come in from California. My old boss and his wife had come up from Florida. A former teacher and friend of mine from college had come from up from Mississippi, and a former teacher of David’s from high school had come from western Massachusetts. Other old friends of David’s from college had come from Atlanta and Boston, among other places. The wedding was scheduled for 2 p.m. at a nearby Unitarian Universalist church. We left the apartment around noon and walked uptown along the edge of Central Park holding hands.
Throughout planning the wedding both David and I had wondered from time to time why were we doing this? We had been together for seventeen years at that point. Why were we getting married? Things were working nicely between us the way they were. Were we going to screw up a good thing? We had put in place what legal safeguards we could, such as the health care proxy that had saved the day, when I had first gotten sick. And then there was all the time and expense of planning and organizing a ceremony and reception for two hundred and fifty people. Why bother? David and I didn’t need New York State to affirm our relationship. It was private and personal, connected to our run-down Broadway in a summer thunderstorm. Still, the phrase “use it or lose it” kept circulating around my mind like an electronic banner.
In deciding to get married, David and I had one over-arching idea: To do something that was true to ourselves, and not get sucked into other people’s expectations about what a wedding, or gay wedding for that matter, was or was not supposed to be. So: No flowers. No procession. No champagne. No fancy, expensive caterer. A sheet cake and generic ice cream. Recorded music. Paper plates and plastic utensils. David joked that his mother would have drawn the line at the paper plates and plastic utensils. One of David’s colleagues suggested that we set up a photo stand, so groups of people could have their photos taken together. We wanted a big, but relaxed occasion. We wanted to share the event with many different people from our lives: Family; old friends; new friends; colleagues; former colleagues; families with children; neighbors; doormen from our apartment building; and the beloved doctors, nurses, and aides who took care of us in 2005 and 2006.
But the wedding was about something bigger, too. In my welcome remarks, I dated the beginning of David’s and my unofficial marriage to our back-to-back cancer diagnoses and treatments, noting that we had lived the words “in sickness and in health.” Just about everyone in the church that day knew what an awful ordeal David and I had lived through, when it was a real possibility that death would take one of us. Our respective illnesses colored the day’s events and made them seem all the sweeter. It was as though all of us in the sanctuary that day were acknowledging that life can be awful at times, but that loving partnerships between two consenting adults affirm life in the face of that abyss. Beyond what our wedding meant to David and me, personally, our wedding was a collective, social affirmation of life.
A friend of David’s was our minister. She had been a leader in the marriage equality movement within the church, feeling that laws that prohibited same-sex marriage trampled on her religious freedom to perform such ceremonies. David and I stood at the altar, facing one another, and holding hands. He looked handsome in a new khaki-colored summer suit. He wore his bow tie with dragonflies on it, which he knew that I admired. I wore a new seersucker suit. Our minister had warned us that the ceremony would be over before we knew it. We used traditional vows.
But a funny thing happened at the moment to say “I do.” Standing at the altar, a powerful sense seized me that out of all the people in the world, if ever there was a person whom I wanted to marry, it was David. At the moment to make my vow, out of my mouth came: “I sure do.” I hadn’t planned this. But suddenly it seemed like the right thing to say at the right moment. Everyone laughed. David laughed and repeated the phrase when he made his vow. As the younger, and in the early days of our relationship, the more tentative and ambivalent partner, my unequivocal affirmation surprised us both.
There was only one thing about the wedding that David and I would have done differently. We did not take a post-wedding trip. Being seventeen years into our relationship at the time, I couldn’t quite bring myself to use the word “honeymoon.” We got married on a Saturday, and on Monday both of us went back to our day-to-day lives. This was a mistake. Getting married was exhilarating, and in retrospect, it would have been nice to have had a little decompression time. But we didn’t know that. We were figuring things out as we went along.
Not helping matters, it poured down rain that Monday morning after the wedding, cascading streams of water, and I was beginning to come down with a head cold. I drifted into a maudlin state. That morning David sent an old photograph of himself as a young man to a friend and copied me on the e-mail. Many years ago, her husband had died prematurely of cancer. The dark rainy Monday morning, not feeling well, seeing David as a young man, and thoughts of early deaths from cancer all set me off; I started to cry. I had been so happy over the weekend, but I was suddenly conscious of life’s fragility and its brevity. One of us — David or me — will likely die first. The warmth, companionship, intimacy, and love, such that I had never known in my adult life, will come to an end. Will I die? Will the end kill me? I stood in the bedroom crying.
By this time David had showered and dressed. He, too, stood in the bedroom, ready to go to work. He wasn’t going to descend into this morass of unfounded fears and anxieties with me. He gave me a hug and kiss, and then put both hands on my shoulders.
“Yes, it will end,” he said. “But we will have experienced something beautiful and timeless, and the world will go on.” He looked at me with his steady, calm blue eyes.
David left the apartment. Crying, I waved from the window, so intensely aware of the impermanent and transitory nature of the moment.
I suppose it is this cycle, this transfer of spirit and values, that gives me any real sense of immortality as a palpable force in the world. Others will follow David and me, and unions like ours will continue to be written.
Scott Bane’s stories have appeared in “Contrary Magazine,” “Into the Void,” and “Christopher Street”. “The Huffington Post” and “Poets & Writers” among others have published his journalism. “The New England Journal of History,” “The Gay and Lesbian Review,” and “Cleaver Magazine” have published his essays. An earlier version of this personal essay appeared in “Memoir Magazine”. Scott lives in New York City.
STORY IMAGE CREDIT: Flickr Creative Commons/Danny Hammontree