by Fred Hersch
In clinical studies at that point, the results were inconclusive. In some cases, patients experienced a reduction of their viral load and a bump in their T cells when the drug interruption was over and treatment was restored. In other cases, the virus reverted to a wild state when it wasn’t under attack by the antiretroviral drugs, and treatment was not always effective when it resumed. I felt so awful that I was willing to try almost anything, and I didn’t have a lot of options. So I went along with the strategic interruption in the hope it would restore my appetite, help me put some weight back on, and generally revive me.
With Christmas approaching, Scott and I went to our house in Pennsylvania. We have always enjoyed having a little yuletide respite together. (Growing up, our family lit the Hanukkah lights and had a Christmas tree.) If I was going on a drug holiday, I thought it might as well be festive.
About ten days after I had stopped my HIV meds, I started to behave strangely. Alone in the house with Scott, I felt oddly caged. I had a hard time communicating. I would say, “Honey, I’m feeling…” or “Let’s…” or “Can we…?” and not be able to finish the sentence. I often couldn’t remember what I had been talking about a few seconds earlier. I couldn’t form words coherently. I didn’t know why I was so confused, and I didn’t fully realize how confused I was.
We stayed in the house through Christmas and into the last week of December, and my behavior grew increasingly erratic and volatile. I spent most of my time lying on the living room couch, avoiding talking to Scott. When we opened Christmas presents from various friends and members of my family, I was irrationally outraged by some of the gifts. “Look at this scarf—what a piece of shit!” I hated the color of the new towels Scott had thoughtfully bought for our bathroom. I got weirder and weirder, and I kept feeling that there were things I wanted to say to Scott but couldn’t say. The darkness inside me was unspeakable, literally, and foreign to me, given how well Scott and I generally communicated and how much I loved him. I felt increasingly like I was faking at everything, and I thought Scott would see through me and leave me. I was withdrawing and becoming paranoid.
Scott was confused and worried for me but tried not to let me know how scared he was. Fortunately, he knew what to do: He betrayed nothing, and was very good at disguising his fear, to keep me calm. By New Year’s Eve day, he was so afraid for me that he called Dr. Liguori. They talked—Scott told him briefly what was going on—but he was mostly listening to Michael and nodding. I listened from across the room but didn’t say anything. After a few minutes, Scott handed me the phone. Michael said, “Fred, how do you feel?”
I said, “Uh…uh…uh…” He asked a few more questions, and I couldn’t give him anything like intelligible answers.
Michael said calmly, “Can you put Scott back on the phone?”
Scott nodded and looked at me while Michael talked for a few minutes. He hung up and said without hesitation, “We’re driving back to New York. We’re going to the hospital.”
I didn’t fight him. In fact, I think I was probably relieved on some level. I could sense that there was something very wrong and that I needed help. We canceled our New Year’s Eve dinner with Pennsylvania friends and left in midafternoon.
Over our holiday break we had been watching my brother Hank’s dog, a beautiful border collie named Homer, so on the way back to New York we had to return him to Montclair, New Jersey, where Hank was living with his wife and their two children. Scott arranged for Hank to meet us in a parking lot off the highway, to save time getting me into the city. I sat in the car and watched, hunched down in the backseat, trying to act invisible, as Scott brought Homer over to Hank and they talked for a minute. I remember seeing Hank just looking my way from time to time and nodding. I thought, Aaah…this is going beautifully. I’m fooling them all. My plan is working! Somehow I was convinced that I was playacting and pulling an elaborate trick on everybody. My behavior had quickly gone from morose and uncommunicative to quasi-hopeful to full-bore delusional paranoia.
When we got to the emergency room at St. Vincent’s Hospital, I was seated on a bed in a curtained-off area, with Scott sitting alongside me. A doctor came in and gave me a standard psychological evaluation: “What’s the date and the day of the week today? Count to ten, forward and backward. Who is the president of the United States?” I answered all the questions quickly, laughing inside at the fact that I was fooling Scott and the doctor into thinking I wasn’t going mad.
I was given a blood test, and it showed that my T-cell count had plummeted to the double digits and my viral load had soared into the millions. Prior to the break in my drug regimen, in the more than twenty years that I had been living with HIV, my viral load had gotten as low as around 50,000—meaning there were 50,000 copies of the virus in one milliliter of my blood. The virus was always present at a certain level but somewhat under control. Now the virus was taking over my body and my mind. During the few weeks I had been going without drugs, the virus had multiplied at an exponential rate and spread beyond the bloodstream into the central nervous system, crossing the blood-brain barrier. It was literally poisoning my brain.
The hospital staff allowed me to go home briefly to pick up some personal things, and I packed as if I were heading off on vacation, stuffing multiple changes of clothes into a big suitcase. I even brought a book to read in my leisure, William Faulkner’s As I Lay Dying, which I chose with no ironic intention. I was admitted to the St. Vincent’s AIDS ward, where I spent the next eleven days in a state of twilight consciousness, sometimes referred to as a semicoma.
My mother came in from Cincinnati the next day, and I remember being annoyed by her presence. I wouldn’t talk to her. I would whisper random incoherent thoughts to Hank, who visited often, but was cold to Scott. The nurses in the AIDS ward, who had no doubt seen this kind of behavior many times before, kept a firm grip on me. When I refused to shower or shave, they forced my hand. I had no appetite, but they made me eat. Afterward, I would defecate on my bed, unable or unwilling to get up to use the bathroom. I just lay there for days, balled up inside my unabating madness.
In an extraordinary stroke of good fortune, two important new antiretroviral drugs had just become available that month—Selzentry and Isentress—and I was put on them, along with a potent antipsychotic drug called Zyprexa. Since the fall of 2007, I had also been taking yet another new antiretroviral drug, Intelence, under the “compassionate use” guidelines that permitted experimentation by willing patients, as I was eager to try anything to get better. So I was taking three new ARV drugs at the same time. The combination of medications was effective enough for me to be discharged on January 11, 2008. If I saw you that day and you asked me how long I had been in the hospital, I wouldn’t have known what to say. Two days? Two weeks? I had no idea.
I went home with Scott to our loft. My viral load had begun to drop, thanks to the new drugs, but the HIV was still rampant in my brain, and the antipsychotic drugs were not enough to counteract it. The diagnostic term for my condition was AIDS-related dementia. Put less clinically, I was crazy.
At the time Scott was in the last term of study for his master of public administration degree at New York University’s Wagner School. He stayed home with me as much as he could, but he had to go to classes, do our grocery shopping, and handle everything else necessary to keep our life intact. When he came home, he never knew which Fred he would find—the insatiably needy one, the cruelly icy one, or an unpredictably weird new one. It was all he could do to contain his frustration with me, even as he knew I wasn’t responsible for my own behavior. My manager, Robert Rund, cleared my calendar, while I curled up on the couch for nearly two months, refusing to see anyone, because in my mind everyone was conspiring against me. The only person I consistently wanted to see was Hank, whose presence had a way of calming me. I had almost no contact with my parents.
I believed I had the power to control time. Watching TV, I thought I could manipulate the content of the shows with my
mind. I walked around the halls of our building naked. I had suicidal thoughts—if I’d had the strength, I would have opened the window in the back hallway and jumped out. I let my hair and my beard grow long and unbrushed. I looked like a homeless person. I deleted all my e-mails in the middle of the night. I thought someone was going to come and take away my piano and sue me for breach of contract.
If I ventured outside the loft, it was in a state of manic delusion. I thought there was a plot against me in the local supermarket. If I announced one day, “I am only going to eat Cheerios from now on,” Scott did what one should do when dealing with someone who is psychotic: He just agreed with me, since there was no point in trying to make me see reason. When the few friends I allowed to see me came over, I lay on the couch, thinking, They’re all lying to me.
In my rare moments of near lucidity, I could sense what was going on with me. I remembered having seen it before in friends with AIDS, including my first partner, Eric. He had moved back to San Francisco in the early nineties, where he became the manager of a gay bar, the Edge, in the Castro district. He drank even more heavily, had lots of sex, and didn’t bother to take his AIDS meds with any consistency. The last time I had seen him socially he was loud, belligerent, and irrational—no doubt suffering from AIDS-related dementia. He died in 2005, lying alone in his bed, refusing all treatment, slipping away. The same thing happened to a gay neighbor on my floor in SoHo, Chris. After he fell into madness, he moved back to Idaho, where he died in the care of his family. At their end of their lives, right before they passed, both of them looked and acted exactly as I looked and acted now. Dementia was the canary in the HIV/AIDS coal mine. I knew I couldn’t have long to live now. As strange as that was to face, the way I felt about it was stranger yet. I was so crazed and unhappy, I wanted to die.
CHAPTER 16
COMA
Scott watched over me in the loft, keeping me under control with his warm presence and calming voice, trying his best not to send me spinning out of control. I watched TV listlessly, read snippets of magazines and the New York Times, dozed off, and paced around the loft with no desire to play the piano. I had no energy. Every now and then I’d blurt out something nasty or semi-rational or groan. Looking back on this period now, I can remember most of it well, strangely, despite being powerless in my own skin at the time. After a while, the periods of extreme behavior came less and less often, and the stretches of near normalcy grew longer and longer. The doctors told Scott and me that the combination of the antiviral and antipsychotic drugs was working in my favor, and I would get better by the day. I began to believe this as my energy and appetite started coming back. In time, my death wish was supplanted by gratitude that I was still alive, and I got itchy to get back to making music.
Over the course of February and March 2008 my condition improved dramatically. I recovered my weight and was back at around 130 pounds, about right for me in those days. It wasn’t until the end of March or thereabouts that my head was fully cleared and my energy returned to something close to normal. I was becoming myself again. In late March I managed to conduct an intense one-week professional training workshop for twelve young musicians administered through the Weill Institute at Carnegie Hall. Though I had originally been scheduled to run this alone, I wasn’t that well yet, and Carnegie helped me out by hiring a few additional colleagues to manage the students. Around that time I went to see Dr. Liguori for a checkup, and he said, “Fred, you’re a very lucky man. You are a Lazarus patient. You have virtually risen from the dead.”
Later that spring, I found myself working at almost my usual pace once more, though I was still not up to going on the road. Ruminating on my good fortune, I got to thinking about my past and how I had become the musician and the man I was. I thought about the artists and others who had most influenced or inspired me. I had procrastinated on a commission from Jed Wheeler at Peak Performances at Montclair State University in New Jersey to write an evening-length work for jazz trio. With the deadline looming, in just a few weeks I composed twelve new tunes—in twelve different keys—in homage to people I have found inspirational, building on my established practice of writing dedication pieces. I wrote tunes for the composers Antonio Carlos Jobim and Egberto Gismonti, the pianists George Shearing and Jimmy Rowles, the composer and saxophonist Ornette Coleman, the renowned ballerina (and muse to George Balanchine) Suzanne Farrell, the Vietnamese Buddhist monk and peace activist Thich Nhat Hanh, and others. The resultant piece made its premiere in early May.
Also that spring, mysteriously, I felt freed up to express myself in new ways—pushing ahead with the memory of my escape from death actually receding faster than I expected. Two weeks earlier I had introduced a whole new group concept called the Pocket Orchestra: a quartet of piano, trumpet, voice, and percussion. I invited the sensational young Australian vocalist Jo Lawry, who could sing anything with precision, agility, and sensitivity. (Since the days when we first worked together, Jo has emerged as an admired singer-songwriter, in addition to becoming world famous as the sole female backup singer in Sting’s touring band.) I wrote new arrangements of pieces I had composed for other configurations of instruments, such as “Free Flying,” my dedication to Gismonti, and “Child’s Song,” my tribute to Charlie Haden, with nonverbal, instrumental-style parts for Jo. Ralph Alessi played trumpet to round out the ensemble.
We played two nights of sets at the Jazz Standard, recording them off the soundboard for posterity, with plans to go into the studio to record a proper album of the material. After the shows Jo Lawry and I listened to the live recording in my loft, and she broke into tears. “It’s you,” she said. “Welcome back!” I ended up canceling the studio plans and released the live recording. Despite a few technical flaws, it seemed to capture something precious.
Bob Hurwitz of Nonesuch generously gave me the rights to release the master recording of Fred Hersch Plays Jobim, the fourth, unreleased album recorded for the multi-disc set Songs Without Words. Sunnyside Records released it that summer. I was proud of this project but still a bit unsure of how far I would come back physically and musically. So I wanted to get this out to show I was not done yet.
I took a string of bookings of myriad kinds—among them, a date with my trio and Kurt Elling at a small but nicely curated jazz festival in wine country in Healdsburg, California, and a concert in Cincinnati to celebrate an important local deejay, Oscar Treadwell, who had died a couple of years earlier. (Jazz musicians’ appreciation for Treadwell was such that Charlie Parker composed a piece in his honor, “An Oscar for Treadwell.”) The pianist Bill Charlap had taken over from his mentor Dick Hyman as director of the Jazz in July series at the 92nd Street Y in Manhattan, and asked me to participate in a tribute to George Shearing, who had recently been awarded an Order of the British Empire and was enjoying a flurry of late-life appreciation.
When I returned from the California trip, in early June, I felt a little blah, like I might have caught a bug on the plane, as many people do after sharing germs in a pressurized cabin for hours. Over the next few days I felt significantly worse—I was listless and achy, and I’d started to run a fever. I thought, Oh, shit—now I’ve come down with the flu. On the third or fourth day of feeling progressively debilitated, I called Dr. Liguori, found that he was on vacation, and went in to see the physician on call. He told me it looked like it might be pneumonia and said to rest for a couple of days and call him if it didn’t improve. At that point he’d have a chest X-ray taken.
That Monday night, June 9, I was alone in the loft—Scott was out hearing some music—and felt terrible. I was feverish, weak, and afraid to be alone. I called Scott, who was hanging out with some friends after the show, and asked him to come home as soon as possible. He returned soon and made me some tea. We decided to call the doctor first thing the following day and arrange to have that chest X-ray taken.
The next morning I took a cool bath to try to get some relief from the fever. I lay there for some time, depleted.
As the water drained, I put my hands on the side of tub and tried to get up but found that I couldn’t lift my own weight. In horror, I called to Scott for help. Coming into the bathroom, he saw me struggling and said, “Fred, you need to tell me if you’re exaggerating in the slightest and being melodramatic, or if you really can’t get out by yourself.”
I said, “No, I really can’t get out of the tub.”
Scott lifted me, shivering and weak, out of the bathtub. What happened after that—in the days, weeks, and months that followed—is a blur of fleeting impressions and sensations, hazy memories, and dream images. Nearly everything I now know about the events in my life from that day, Tuesday, June 10, 2008, to the end of that summer, I know from Scott relaying the details to me sometime after the fact.
As he later told me, I was limp and delirious, breathing heavily. Though Scott was surely terrified himself, he calmly dressed me and somehow got me down to the street and into a taxi. In a few minutes’ time, we were at St. Vincent’s Hospital. Scott told the person doing intake in the ER that I had HIV/AIDS and was having trouble breathing. A clamp was slipped onto my finger to read my pulse and blood-oxygen level, and the numbers were bad. My blood-oxygen level was 70 percent, whereas 98–99 percent is normal. I was immediately put into a bed in the emergency room, and people started working on me.