Live Through This

Pins, Needles, and Piano at Century’s End

At the beginning of 1999, I was living with Amy, my betrothed, on the Lower East Side, subletting a one-bedroom apartment facing a fountain and a courtyard, a major upgrade from the studio apartment facing trashcans we previously rented. We were rushing into life, but also feeding off our shared anxieties, putting off marriage, dissertations, major life monuments. One night, I was taken to an off the menu dinner at the TriBeCa Bouley by the two greatest lyricists of bebop, Annie Ross and Jon Hendricks, who were trying to top each other with stories about Charlie Parker and Thelonious Monk and on and on, and each story was a lifeline. I came home to find Amy struggling to breathe. I called 911 and panicked, while she explained, between gasps, that she had sniffed nutmeg because medieval mystics had done the same. As one does. I thought I was going to die. She was discharged the next day. A week later, I felt numbness and tingling in my extremities. Two neurologists and a spinal tap later, I got the diagnosis—multiple sclerosis. “Live through this” seemed to be the message.

Get a new ailment, learn a new word. My acquisition: “paresthesia.” It is defined as a pricking, tingling sensation. A friend told me that sounded fun. Not that kind of tingling. More like pins and needles. It has been over 20 years, and I am still feeling them as I type. There is a feeling of tightness in my chest, and I constantly have the sensation that my extremities have fallen asleep, but I can never wake them. I had just turned 26. I do not complain about this, and I am not complaining now, not really. I am, so far, one of the lucky ones. But when I had these new sensations, and no one could reassure me that they would not get worse, I went straight to the piano, not to see how I fared with the easier material, but the hardest. Could I still have the cadenza in Chick Corea’s “Spain”? I was bargaining. Could I keep this one? Please?

Playing solo piano was, from that day forward, always a duet with the paresthesias. The house always wins, but when? How? How long could I hold on? The composition that made me feel I could hang on, at least for a while, was “Fleurette Africaine” by Duke Ellington, something he later performed as “Little African Flower.” It is the masterpiece from Money Jungle, his eccentric 1963 session with Max Roach and Charles Mingus, whose plight with ALS I certainly thought of when facing MS. That recording session was sturm und drang. Years earlier, Ellington fired Mingus as his bass player and Roach and Mingus clashed on everything. Yet on that track, Mingus makes a sound I have never heard anywhere else. It sounds like a gentle wind brushing against a flower. It was not a bass anymore, but a vessel. It became that breeze, that flower, that soft and seductive caress. It was a natural, delicate sound from a big, strong man. It took all that power to create something so delicate and otherworldly. Once Mingus was diagnosed, in 1977, fourteen years later, he never played bass again. But I tried not to think of that. I thought of touch. My fingers felt heavier, somehow suited to “Fleurette Africaine.” It’s a variation of E Flat Minor Blues, more black keys than white. It’s a song you can play rough, and it still comes out lyrical. I sat in my Grand Street apartment bargaining with the muse. The cadenza on Chick Corea’s “Spain” had been my way of measuring my chops, but I didn’t need it anymore. I don’t need to play “Spain” ever again, but I’d like to keep this one. I thought of the space between notes like overtones, and I felt like the overtones could last an eternity, their own composition. This was not like John Cage’s “4’33”.” These were elegies for notes played. In memory of my feelings. My fingers were still hitting those keys. I thought about how a piano goes out of tune right after it is tuned. How long will it sound good? How long will I sound good? The paresthesias burned their way through, but they weren’t taking away this song. Nothing could take it away, not on this February afternoon, when the sun was hitting my window at the appointed hour, and I had love and books and the muse and still have the ability, at least on that day, and in that moment, to summon Duke Ellington.

About a month later, John Ashbery, my favorite living poet, summoned me to a book party, at the Dactyl, a SoHo gallery. He had liked something I had written about him. Even though I felt weighed down by the heaviness of my limbs, I floated to the other end of Grand Street—through little Judaica, through big Chinatown, through little, Little Italy—like I was lighter than air. I looked at the eminence grise holding court in his 70s, wondering if I’d be, like the grand old poet, writing and drinking and fucking in older age. (I was pretty sure I would never be drinking that much.) What would my septuagenarian book party look like? How damaged would I be?

I asked Ashbery, while he was already pretty soused, how I was supposed to teach his poems. “I don’t know,” he said. “I wasn’t thinking about that when I was writing them.” He smiled impishly.

The hand holds no chalk

And each part of the whole falls off

And cannot know it knew, except

Here and there, in cold pockets

Of remembrance, whispers out of time

Ashbery was putting out a volume of poetry every year, and I would devour each one. I was told that it was impossible to keep up with him, and that I would stop keeping up, too. I swore to not let this happen at 26. I thought this would be evidence that my heart had died. Eventually, I did stop keeping up with Ashbery, maybe around the time he stopped keeping up with himself. My heart did not die.

At 26, I was making, combined with adjunct wages at Hunter College, a modest living from writing about some of these passions. It was always hard fought, but worth it. My dissertation adviser—Wayne Koestenbaum, a man of brilliance and originality and endless creativity—asked me, over drinks, “What’s it like to be 26?” I said, “I hope I never feel this old again.” Feeling old when I was young brought me closer to late style.

When I got my MS diagnosis at the beginning of 1999, my first impulse was to feel vindicated I had lived as I wanted to live. I had followed my heart for love, for literature, for music, for all of it. I did not apply to law school. I did not make any of my life decisions based on sound financial calculations. I would never feel as light and free as I did before that morning in January. But one makes meek adjustments. One endures. The body continues to rebel, and one somehow keeps up with it. I learned, in a way I had not before, that I had a body. Most people at 26 learned that through sex, or sports. Now I was learning it in another way, a very unwelcome instruction. Beck was just a few years older than me, and he did not have a serious medical diagnosis, yet he somehow got it.

Looking back at some dead world

That looks so new

Beck was feeling free to experiment. It was part of his contract at Geffen that he could make a record for an indie label if he wanted to. And that’s what Beck thought he was making with Mutations—a caesura after the massive success of Odelay a few years earlier. This was a very different Beck from that record, every sample calculated to reach audiophiles, with nods to Schubert’s Unfinished Symphony (itself a fragment) and Stan Getz’s “Desafinado.” Never since Elvis Costello had there been an artist so calculated to appeal to music critics. It worked. But already by his third outing, he wasn’t joking. He was bleak. I was listening to that album during the spinal tap that confirmed my diagnosis. The cover stared at me. Beck was wearing a t-shirt covered in plastic wrap. His grandfather, Al Hansen, was one of the Fluxus founders, and his father scored string arrangements for Jackson Browne and Metallica. In some ways, I felt that Beck was like me—a belated young person. (When the great jazz bassist Charlie Haden played on Beck’s previous album, he had to call him “Mr. Haden”, even after Haden said, “Please, just call me Charlie.”) Beck thought he was making something he could share with friends on an indie label, but Geffen wanted it. He thought only a handful would be hearing it.

There's no whiskey there's no wine

Just the concrete and a worried mind

Cause everyone knows death creeps in slow

'Till you feel safe in his arms

I could feel death creeping in slow, prematurely, of course. Richard Pryor described MS as a disease where God doesn’t want to kill you, just slow you down. Joan Didion described it as a diagnosis that had no meaning. Would time be on my side? No one really knew anything. Doctors were gagged by the specter of malpractice. I thought I had surely entered adulthood by insisting that I fill my life with things that really mattered. I was feeling and hearing acutely—for today, the only day we had. Hillary and Jackie, about the great cellist Jacqueline Du Pre laid low by MS, happened to be in the theatres shortly after my diagnosis, and because I am a glutton for punishment, I went and took Amy with me. We were both speechless at the film’s end. Du Pre’s moody and triumphant career defining performance of Elgar’s Cello Concerto said it all; her turbulence as a woman of beauty and strangeness made it all the more compelling. These lines came alive when I was watching Emily Watson living wildly and impetuously, then suffering with just as much intensity, maybe even more. Would my life become a tear-jerker like Hilary and Jackie? Or did I still have a few plays in me yet. I listen hard to figure it out. “The death of a beautiful woman,” wrote Edgar Allan Poe, “is unquestionably the most poetical topic in the world.” Jackie du Pre—whose beauty would be ravaged by the same ailment I now possessed—would haunt me for quite some time. I passed my orals, filed my pieces, somehow paid the rent. I was diagnosed by Mount Sinai and blessed by John Ashbery. Y2K came and went. It was not the end of anything, not yet. 1999 was a poetical year.