by Fred Hersch
Scott stood by, trying to take in what was happening. Someone said my breathing was failing and I would need intubation. As one doctor and a nurse were preparing to insert the tube, others were hooking me up to equipment, taking readings, and doing lots of other things—fast. Scott was told my blood pressure had fallen through the floor and my kidneys were failing. I was in septic shock.
In the intensive care unit, the physician on duty was Dr. Mark Astiz. (The regular intensive care unit at St. Vincent’s was full to capacity, as it often was, so I was moved into the surgical ICU.) Dr. Astiz told Scott I was in critical condition and made utterly clear that it could hardly be more serious. He said, “The next forty-eight to seventy-two hours will determine if he survives.” Scott was numb, overwhelmed. Less than an hour had passed since we arrived at the hospital.
Scott called my mother from the ER and told her to get on the next flight from Cincinnati to New York, and he called Hank’s house and told Sharon, Hank’s wife, to reach Hank at work and tell him to come to St. Vincent’s. Hank came right away from his office at Sports Illustrated, where he was working as a senior editor. When he finally was able to see me, he was convinced that this was the end. My mother was there by nightfall—she knew full well how dangerous sepsis is, and she was rightfully fearful for my life. Scott also called my father, who flew in a day later from Healdsburg, California, where he had been living since his retirement from his legal practice. My immediate family had gathered for what they thought would be the last time they would see me alive.
On Thursday morning Dr. Astiz told Scott that my condition was still critical—and not improving. I needed to be put on life support—a respirator for my breathing, as well as kidney dialysis. Scott asked for a frank assessment of my prospects for coming through this, and Dr. Astiz told him things could go either way.
Already under heavy sedation, I would need to be medicated into a comatose state in order to have any chance of survival. In an induced coma, my body would be functioning at the lowest possible level, buying time for my compromised immune system to fight the pneumonia.
After ten days or so in a coma, my condition was getting no worse, though not better. My father went back to California, and my mother stayed for a couple of weeks with Scott at our loft, both of them spending all day by my side in the ICU.
After an initial breakdown in the ER when I was first admitted to St. Vincent’s, Scott shifted into his management mode. It was the best way he knew to deal with such a crisis. What this meant was waiting patiently every day for the doctors to do their morning rounds so he could get an update; forging relationships with the ICU nurses to obtain unfettered access to me during visiting hours and beyond; keeping the insurance company at bay; and managing the countless calls and e-mails coming in from friends and family inquiring about my condition. This way of dealing with the devastating circumstances was simply a natural reaction for Scott; it kept him too occupied to fix on the worst possibilities.
One of the hardest days for Scott and my mother was the day that the doctors informed them that it was necessary to surgically insert a feeding tube, an act that carried with it associations of patients in comas for months or longer, people who were never again the same, if they lived at all. Around the same time, the doctors told Scott that I would need a tracheotomy, to minimize the chance of developing a new infection or incurring damage to my vocal cords from the intubation. The surgery was done in the ICU, with Scott’s consent. But my right vocal cord had been damaged—irreparably paralyzed by the plastic tube that had been resting against it for too many days. I still had one functioning vocal cord, but without the second cord for it to vibrate against, I could not speak—or swallow. The problem was academic at this point, anyway. I couldn’t speak or eat in a coma, with or without functioning vocal cords.
As I learned much later, I was on the brink of death for weeks and comatose for almost two months. By a fortunate fluke of timing, Scott had just finished graduate school when I was hospitalized, and he was free for the summer. He was available to be at the hospital, watching over my care and acting as my advocate, the whole time. He arrived early every morning, around eight o’clock, and got a briefing from the staff on duty. If I had sheet scars, he could tell that I hadn’t been moved enough during the night and he would let the nurses know about it squarely and firmly. He was constantly massaging my hands in the hope that I would one day use them again to play the piano. If permission was needed for a surgical procedure, such as the tracheotomy, Scott had medical power of attorney, and he would evaluate the situation and make the decision. He was letting certain people know that I was seriously ill and not able to see visitors, but even among those closest to me, many did not know I was in a coma, on life support, and under kidney dialysis.
Scott let Robert Rund know that I would not be able to perform at the Cincinnati concert or the Jazz in July show in honor of George Shearing. Announcements said that I had withdrawn “due to illness.” Inevitably, many people connected my HIV status with the cancellations and my increasingly apparent absence from the New York jazz scene. I couldn’t have blamed them. In the early days of AIDS, a particular strain of pneumonia, Pneumocystis carinii (PCP), was closely associated with the disease and cited often as the final cause of death. However, what I had contracted was pneumococcal pneumonia, a different and unrelated strain. My case actually had nothing whatsoever to do with my having HIV. I just happened to come down with an acutely virulent strain of pneumonia, one of eighty or so variants of the disease known to medical science at the time. I was near death from pneumonia, but not dying from anything related to AIDS.
Day after day, week after week, Scott watched me attentively, with no improvement in my condition. The ritual of going to the hospital, making his own rounds to gather as much information as possible, ensuring that information was being shared among the nurses, the ICU doctors, and the specialists, was his survival mechanism. In the face the dark tyrannies of disease, the innumerable unknowables, and the obtuse arcana of medical science, he found solace in his daily routine. It gave him a sense of purpose and value in a sphere where feelings of powerlessness can be overwhelming.
I remember reading once that virtually all of the world’s religions, from ancient paganism to Islam and Buddhism, are rooted as much in ritual as in systems of belief. Through the repetition of routine, especially social routine, human beings find comfort and hope. I know something along those lines takes place in the making of jazz. The rituals of the bandstand and the recording studio put the musicians in a place where they feel sufficiently secure in the high-risk business of collective improvisation. I think Scott’s hospital routine had the same kind of function for him, with stakes considerably higher than anything I would ever face as a musician.
My temperature would not settle down to normal; every week or so it would spike to 102 or 103, and the doctors didn’t know why. They told Scott I had “fevers of unknown origin.” I also developed a secondary pneumonia, Klebsiella, a deadly strain that can strike people in a deeply compromised state. My prospects were grim, and I was oblivious to it all, lying comatose. Scott was adamant that no one other than my immediate family was to see me while I was in the ICU hooked up to machines. He struggled to hold on to the memory of how my face used to look, while what he saw seemed more and more like a skull.
I had been in a coma for about a month and was still in the ICU when Scott asked Dr. Astiz when he expected to see some change in my status. “In a case like this,” Dr. Astiz said, looking down at me, “good things happen slowly.” Turning to face Scott, he added, “But bad things happen fast.”
—
Though I was comatose, I wasn’t brain-dead. My mind was somehow functional, and my senses were intact but in a state drastically restricted and distorted by medication. I was knocked out by the drug propofol—and later methadone—to keep me from standing up in my bed or pulling out my tubes. In fact, toward the end of the coma, I was strapped to my bed for a short per
iod.
I was living in my own world, having dream experiences that were possibly connected to what my body was going through in the real world. A number of my coma dreams—and nightmares—were so vivid and memorable that I will never forget them. Though I rarely remember my dreams well, recalling perhaps just one or two details in the morning, I remembered these precisely. There is no knowing exactly when the events took form in my mind during my long period of unconsciousness. For all I know, the totality of these fantasies could have come to me in a blink of twenty seconds a moment before I began to reenter consciousness. Eventually, about a month after I came out of the coma, I was able to type up my recollection of the dreams in the words below.
THE KNITTERS
I am in a foreign country that for some reason I identify as Wales, although I have never been to Wales. I am looking down from an elevation at a table around which are seated six to eight women in traditional attire that reminds me of Amish garb—dark woolen dresses, aprons, and white caps. There are candles burning, and the room smells of honey and wax. The women are using nubby brown wool and are talking to one another as in a quilting circle. I cannot hear what they’re saying. At the point when a knitter has produced a foot or two of fabric, the ends of her knitting metamorphose into a small, beautiful brown goose. The bird swoops out of the knitting, flies up to the rafters, and disappears. Then the knitter starts again. More and more birds are created in this fashion. The atmosphere is serene.
THE NIGHTMARE OF THE VAN
I am strapped into the backseat of a panel van, the only person in the van—the driver’s seat is empty. I am restrained by both seat belts and rope. I cannot speak, though I try to do so; my mouth is covered with duct tape. A man keeps coming to me and yelling through the window that I have to pay a fee to be released, but I can’t speak and can’t reach my wallet. I am struggling and terrified. The scene is loud and chaotic, and there are bright lights and sirens interspersed with patches of darkness. Men in uniforms seem to be running the operation. It is a parking lot in hell.
BRUSSELS
I am in the foyer of a beautiful concert hall, one almost like a church, in Belgium. I have been flown there to do a special musical collaboration with a Belgian woman in her fifties who is somewhat motherly. She plays a hybrid instrument that sounds sometimes like a viola and sometimes like a lute. I want to rehearse and keep asking to see the music, but she keeps telling me to trust her—everything will be all right. We chat with people in the foyer. Everything is super-relaxed. When the woman and I finally play together, the music is simple and emotionally powerful.
THE BOY
I am lying on a high bed, one higher than a hospital bed. I can hear adults speaking in the other room. There are several children running about the room I’m in, and one little boy in particular is very attentive. He gives me my medicine even though he has no idea what he is giving me or how to administer it. I keep telling him not to get near me, because I am contagious, but he pays no attention, and I am too weak to argue with him. He has big green eyes and is the essence of sweetness.
THE DREAM OF MONK
I am in a small cage, just five feet by five feet. I can neither stand straight up nor lie flat—I have to crouch or be in a fetal position. In the next cage over is Thelonious Monk. His cage is just slightly larger than mine. A man bursts into the room, turns on bright lights, gives us each a piece of music manuscript paper and a pencil—and challenges us to write a tune. The first one who finishes is the one who gets released. I frantically write as fast as I can. I look over—and Monk is taking his time, while smiling beatifically and enigmatically.
THE NIGHTMARE OF THE AIRPLANE
I am lying in a full-size bed in the first-class section of a plane, accompanied by Scott. There are Asian flight attendants in colorful outfits. From my bed, I watch sushi chefs and a floor show of a couple dancing an erotic tango. Cocktails are served. I drink and eat and immediately start to vomit and develop a high fever. Scott begins to argue with someone, saying that we are not being treated well and that I am seriously ill. I am taken off the plane and put on another one, where there is another full-size bed. The flight attendants are dressed like waiters in an upper-class restaurant of the Victorian era. The food is luxurious. I eat and slip again into a high fever.
THE JAZZ CLUB/DINER IN THE WOODS
I have been hired to play the piano for a nervous female singer. She is certain this gig will be her “big break” and is having the show recorded. Everything is dark as we unload the instruments and recording equipment from the van to the door of the club, which is somewhere deep in the woods. We go inside and find that the place is a diner with rows of liquor bottles behind the counter. The owner/bartender barely looks at us, and that sends the singer spiraling into deeper nervousness. A few of her family members are the only people in the audience, and I am playing a cheesy electronic keyboard. I am extremely uncomfortable.
THE ORB
Scott’s face appears in front of me inside a glowing orb, much like the wizard in the great room of the palace in The Wizard of Oz. He is smiling to me with his whole being and is glowing and radiant with love. He says, “Come to me—I love you” repeatedly. I slowly walk toward him.
—
I was in a coma for more than six weeks before my temperature stabilized and the doctors decided to try seeing if I could be weaned off life support and sedation. Scott was there, watching carefully, anxiously. The first step was to remove the respirator briefly, to see if I could breathe at all on my own. I took one breath successfully and was put back on the respirator. Over several days’ time I was taken off the respirator for longer increments. Eventually, I was able to take ten breaths on my own before being put back on the respirator.
The regimen of sedatives was reduced by tiny amounts each day, and I slowly began to rouse. For some reason, when this happened, the nurses in ICU would become uneasy and increase the sedatives again to knock me back out, much to Scott’s dismay. He told me, much later, that this was really the only time during my coma that he challenged the hospital staff emphatically. “Give him a chance,” he said. “He can do this.”
It took more than a week of slow, steady extraction from life support and reduction of the sedatives for me to gain a semblance of consciousness again. I remember distinctly seeing Scott’s face in early August for the first time since he had pulled me out of the tub in June. My head was still cloudy, with sedatives still in my bloodstream, but I recognized him and could see that I was in the hospital. (In my dream world, it was Scott’s loving face inside the pulsing orb that brought me out of the coma and back to life.) I tried to talk and couldn’t, and didn’t know why.
As I was slowly becoming more and more conscious, it sank in to me that I was not able to communicate. I thought I was talking, but no sound was coming out. Once I began to get my bearings, Scott gently gave me the bare facts: I had been near death and in a coma, and it would take some time for me to regain my faculties. He didn’t tell me how long I had been under.
During a few miserable days just out of the ICU, in a chilly step-down unit, I found myself so weak I couldn’t move a pillow, unable to speak to get anyone’s attention. I received my first few visitors, some of whom kept their composure with me but broke down in tears with Scott after they left the room. Then I was moved into a regular single hospital room. We discovered I had a thick layer of crusted gunk in my mouth from breathing with my mouth open and not ingesting anything orally for so long. The hospital staff and Scott struggled to figure out a way for me to communicate, with no success. They put a pencil in my hand and tried to get me to write, but I was too weak to grip it. They brought in a letter board with the alphabet printed on a grid, so I could point to letters and spell words, but I didn’t have the strength to hold up my arm and point. The occupational therapist handed me my flip phone, and I just stared at it, not knowing how to open it. I attempted to stand for the first time and fell immediately into the physical therapist’s ar
ms at the edge of the bed, like a baby who has not yet learned to walk.
Though it was hardly my most immediate priority, the big question lay in the recesses of my mind: If I didn’t have the capacity to lift a finger to point, how could I possibly play the piano again? Scott, sensing the depth of my fears, slept on a cot next to me in my room, so I wouldn’t have to be alone at night.
Once I was fully conscious and off the respirator and in my own room for two days, the hospital assigned me to a pair of “patient advocates.” This was the Orwellian title for advocates for the insurance companies, whose actual job was to get me out of the hospital as soon as possible. On Friday, August 8, they told Scott they had “great news” and had “found a room” for me in a city-run rehabilitation facility for people with AIDS called Rivington House, on the Lower East Side. Scott raised hell, imploring the doctors to intercede and buy me more time. I was given two extra days and told I would be moving into rehab on Monday.
I was taken to Rivington House on a stretcher by ambulance. My head was slumped over from muscle atrophy, and my beard and hair had grown long and straggly. I weighed less than one hundred pounds. I could take in sustenance, in liquid form, only through the feeding tube that had been surgically inserted into my stomach. Since working vocal cords are necessary for swallowing and I had no gag reflex, a sip of water could go right into my lungs, causing me to aspirate and perhaps develop another pneumonia. All of my antiretroviral, psychotropic, and prophylactic drugs had to be ground up by the nurses and administered to me through the G-tube. I didn’t have the strength to sit up in a chair. My hands and feet were grotesquely swollen, and I was physically uncoordinated. I was forbidden to get out of my bed on my own, because if I was to fall, I could easily break a hip, I was so frail.