*Featured Artwork: “Honeymoon” By Alex NizovskyIn the summer of 2004, my partner David and I left New York City for vacation in Provincetown, Massachusetts. Because of the change in Massachusetts law earlier that summer, we talked a lot about getting married. Or rather we talked a lot about having the right to get married if we wanted to. Being able to get married in Massachusetts emboldened us. We had as much right as anybody else to claim our corner of the public square. We felt less self-conscious, for example, about holding hands along Commercial Street, the town’s main thoroughfare, during an evening’s stroll, or out on the breakwater, a mile-long dike at the far end of town that protects the salt marshes. Provincetown was already a “gay-friendly” place before marriage equality passed in Massachusetts, but even in a place like Provincetown, David and I occasionally felt like second-class citizens. Knowing that we could get married if we wanted to changed how we felt about ourselves and our relationship.
But when it came down to a personal decision as to whether we wanted to get married, that gave us each a bit of pause. Getting married was as a big decision for us, as it is for just about any two mature adults. We dated our relationship to a frantic, jubilant, run down Broadway in a summer rainstorm in 1994. Over the months and years that followed, we still lived separately, but spent most weekends together and spoke by phone most nights. We even developed a regular, playful sign-off. David, on saying goodnight, would wish me “Sweet dreams,” and I would answer in my college French: “Tu aussi.” We traveled well together. At the five-year mark, we took a trip to Paris and Venice; David called the trip our honeymoon. Things worked very nicely between us. If we got married, would we be screwing up a good thing?
Then 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.
My strange weakness baffled my doctor. I was an otherwise healthy, fit, 38-year old. I was in graduate school and had begun my final semester. I also 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 my tiptoes, I couldn’t do it. It was such an odd state. Usually, I didn’t even have to think about performing some physical action; I just did it. Now, I thought very consciously about the action, but nothing. 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.
Outside on the street I started to cry. I called 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. David was allowed to visit me once an hour. He sat alongside my gurney, and we held hands. The hospital finally found a bed for me around midnight. 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 in books and knowing that sunlight streaming through a wide translucent orange banner would be the sort of thing that would please me aesthetically.
As I was getting sick, David kept notes and later wrote a series of updates to our friends and colleagues updating everyone on my then deepening illness. From those reports and photos I have pieced together the story of my cognitive and physical descent and recovery. 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 — “Sweet dreams” followed by “Tu aussi” — and rang off. A few minutes later I called him back with no recollection of the call 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 also 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 here and there 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 in the dusk. 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. 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. 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 held at the mercy of 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 reports 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 neurologist, a specialist in epilepsy, examined and questioned David and me 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 bowties. But love in a terrifying situation gives people the 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. But 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 usual fighting weight of 145 pounds, because I had such difficulty eating.
“Sweet dreams,” David whispered into my ear, as he got ready to leave. “Tu aussi,” I said.
But then after one more surgical biopsy, I tested positive for Hodgkin’s disease. I was diagnosed on May 9, 2005, with paraneoplastic encephalopathy 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 my 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: “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 some of the doctors, nurses, and therapists who treated me. 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. David received the Folfox regimen, which is the standard for colorectal cancer. As part of that treatment, he would then be sent home with a portable infusion pump, which fit inside a small, dark green heavy-gauge nylon shoulder bag, the sort of shoulder bag that a sensible European tourist would carry. The pump dispensed one of the chemotherapy drugs through a slow-drip infusion over twenty-four hours, making little bleeps as it released the drug. David received the infusion even while he slept. 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 that spring of 2006, 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.
David and I still weren’t married legally, but after our respective health odysseys, we were married spiritually.