Insomniac City
Page 15
I elbowed him: “Only Oliver Sacks would say that!” He started laughing. “Well, why not? It’s very interesting. It’s the signal characteristic of homeostasis!”
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12-25-14:
Spoke to O, who is in D.C.—“Merry Christmas,” and so on—he sounded tired and said he was not feeling well. Back home tomorrow. Hope he’s okay. We leave for a trip in ten days.
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1-12-15:
Got back last night from St. Croix—a birthday trip. I turned fifty-four (equivalent to the atomic number for xenon, so O gave me four xenon flashlights). It was warm there, sunny, I did some scuba diving and we swam every day, which was nice, yet I’m relieved to be home. O did not feel well much of the time—nauseated, tired, slept a lot. We almost cancelled the trip last minute. Two nights before we left, he told me had “dark urine.” I was skeptical—he’s hypochondriacal even on good days, as he is the first to admit. But I could see he was worried, talked him into peeing into a clear glass so I could check, and was startled when he brought it into the kitchen; his urine was the color of Coca-Cola. It seemed to clear up some while we were in St. Croix. Even so, he had made a doctor’s appointment before leaving for the trip.
Later:
O just returned from his GP, who thinks he has some kind of gallbladder inflammation, maybe gallstones. Did an ultrasound, but they’re running more tests.
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1-15-15:
O’s doctor phoned: “peculiar findings,” re: CAT scan yesterday. So: Am taking him to see a radiologist at Sloan-Kettering. They want to see him this afternoon.
BUT …
Sloan-Kettering is a cancer hospital, but cancer had not entered my mind. I was still banking on the possibility of gallstones; I thought, at worst, Oliver might have to have his gallbladder removed. I remember the doctor entering the consulting room with a young medical fellow (he was from Italy, I think), and how nervous the young man looked. The doctor got right to it and told us that he had carefully reviewed the CAT scan and, although a confirmatory biopsy would have to be performed, he was ninety percent sure of the diagnosis and said he had some “tough” news. I remember that word, “tough.” He asked Oliver if he’d like to see the CAT scan. Oliver said yes, of course, and he flipped on the computer monitor. I got up and stood behind Oliver, who scooted his chair in close so he could see.
Later he told me that he knew instantly what the scan said. I did not, and I was stunned when the radiologist explained that what we were looking at was a recurrence of the uveal melanoma Oliver had had nine years earlier—a cancer arising from the pigment cells in his right eye; over time, it had metastasized to his liver, which was now “riddled like Swiss cheese” with tumors. He enlarged the image on the monitor, so the white spots—the tumors—looked as large as those made by a hole punch. In cases like this, with a possibility of the cancer spreading, and at Oliver’s age, the doctor said, neither a liver resection nor a liver transplant would be possible.
A liver transplant? I thought.
What has stuck with me so clearly is how calmly Oliver took this news. It was as if he was expecting it, as perhaps he was. He sort of tilted his head and stroked his beard and asked about the prognosis, and the doctor said, “Six to eighteen months.”
“And there’s no effective treatment?”
The doctor didn’t say no, but he didn’t say yes. He explained what could be done, that everything possible would be done, an oncology team was already in place, he’d just gotten off the phone with a specialist, and so on, but Oliver cut him off. He said he was not interested in “prolonging life just for the sake of prolonging life.” Two of his brothers had died of cancer (different forms of cancer), and both had regretted undergoing horrid chemotherapy treatments that had done nothing but ruin their last months.
“I want to be able to write, think, read, swim, be with Billy, see friends, and maybe travel a bit, if possible.” Oliver added that he hoped not to be in “ghastly pain” or for his condition to become “humiliating,” and then he fell silent.
I looked over at the young fellow standing by the door; his brow was damp with sweat. My right hand reached for Oliver’s shoulder, my left hand to steady myself on his chair.
I’m sure we discussed details of the liver biopsy he would have at the hospital the following week. A nurse came in. We had to review some paperwork. But I don’t remember much else about the discussions that followed. Somehow I got us back down to the parking garage, and I drove us home. It was dark by then, and the traffic slow. Oliver made a few calls on the way, calmly relating the news to his close friend Orrin and to Kate. Only once did strong emotion come into his voice. To Kate, he said in no uncertain terms that he wanted his just-completed memoir to be published as soon as humanly possible; it had already been slated for the fall, nine months later, which he said “would be too late” for him to see. Kate said she would contact his publisher and his agent immediately. I remember holding Oliver’s hand when I could take mine from the wheel, and knowing, without saying so, that our life and his life and my life had all changed in ways I could and could not comprehend. I just drove.
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We had met with the doctor on a Thursday. The next day, we went swimming at noon, as we always did on Fridays, and then spent a quiet weekend together, taking walks, reading, listening to music, going to the open-air market at Abingdon Square, cooking, both of us trying to absorb the overwhelming news. Oliver consulted with a few colleagues, including the ophthalmologist who had treated his cancer years before; he had had a chance to look at the CAT scan, too. Recurrences such as this were considered extremely rare, yet the consensus seemed to be that the preliminary diagnosis was most likely correct and that treatment options were few.
On Saturday night, we got stoned—if only as a diversion from thinking the unthinkable. Oliver didn’t like to smoke weed; he preferred edible cannabis chocolates made by a friend of mine, Laura, a trained pastry chef. These were very delicious and very potent. He became extremely cheerful, hilarious, and animated.
“What are you seeing?” I asked at one point, as he lay on the couch.
“It would take a hundred pages a minute to tell you,” O said matter-of-factly.
A moment passed, then he reported with a gust of giggling, “I just had an astounding alteration of perception! I opened my eyes, and in place of my body all I could see was my feet—my comically large, flat human feet. They seemed very brightly colored!”
“What color?”
“Oh! Every color!”
We laughed a lot, laughter itself being something that Oliver felt was very good for one—stimulating pleasure-inducing neurochemicals—and, in turn, good for us as a couple. The effects of all this essentially harmless pleasantness wore off after a couple of hours, at which point we ran a bath, sharing the water in his giant tub, while listening to music and sipping our favorite liquor, Brennivin.
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Over the weekend, Oliver mentioned a few times that he was considering writing “a little piece” about receiving his diagnosis. And on Sunday night, after we had made dinner and cleared the dishes, he took up a small notepad and his fountain pen. At the top of the pad, he wrote, “Sad, shocking, horrible, yes,” underlining each word, “but…”
(Oliver often said that but was his favorite word, a kind of etymological flip of the coin, for it allowed consideration of both sides of an argument, a topic, as well as a kind of looking-at-the-bright-side that was as much a part of his nature as his diffidence and indecisiveness.) Next, he proceeded to list eight and a half reasons to remain hopeful; to feel lucky at the very moment when one might reasonably feel most unlucky.
He wrote quickly, thinking aloud as he wrote, then making one or two corrections with a red-colored felt pen. Once he’d finished, he handed the pad over to me to read:
But …
1. AN EASY DEATH (relatively)
2. TIME—to “complete” life
3. LOVING SUPPORT (Billy, et al.)
4. BOOK PUBLISHED (open at last about myself)
5. MORE GOOD WORK
6. ENJOYMENT ALLOWED
(6-A) MJ now legit
7. BEST DOCTORS, TREATMENTS, ETC. AVAILABLE
8. PSYCHIATRIC SUPPORT
I got choked up, the reality of what he and he and I were facing made all too real by his words on paper. I felt, too, amazed that he was able to collect his thoughts and do so with such aplomb and straightforward eloquence. Unlike myself—more of a melancholic sort—Oliver always was essentially cheerful in temperament, and this list—including the making of a list, an ordering and structuring of the world, not unlike his beloved periodic table of the elements—was very much in character.
As a doctor himself, he had seen more than the average share of grisly and protracted deaths, and he knew that—all things considered—there were probably worse ways to die (ALS, for instance, or, for that matter, the post-encephalitic condition that had doomed his Awakenings patients); hence, this form of liver cancer would bring a “relatively” easy death, so long as it didn’t metastasize to his bones or lungs.
For myself, I felt particularly grateful for number two on his list, as I told Oliver: “I’m thankful we have time, will at least have more time together, however much it is. Even just this weekend, even if this weekend is all we have? That’s more than I had at the end with Steve.”
He understood, and agreed. But for him, “time” meant far more: time to “complete” his life on his own terms, finally coming out publicly as a gay man through his memoir, time to see the book published, time to write pieces he had wanted to write, time to get things in order, time that a sudden and unexpected death, or the slow demise of an illness such as Alzheimer’s, would not allow.
As for number six, “enjoyment,” from the very beginning that was equally important, too, and it was with an impish sense of humor that he had gone back to the list and added “#6-A,” which indicated that “MJ”—i.e., marijuana, or cannabis—could now be legitimately, medically, and without any guilt whatsoever consumed.
I have kept this list, for those eight-and-a-half tenets helped guide him (and me) in the months ahead. It also became the basic blueprint for his essay “My Own Life,” which originated over the dinner table as well.
Two, maybe three, nights after he’d jotted his little list, I asked Oliver what he had in mind in terms of the essay he was considering.
“Well, let’s see …” He paused. “I suppose I want to begin by saying that a month ago, I felt that I was in good health. But … now my luck has run out…”
“Hold it,” I interrupted, “let me get a pen.”
I did so, and a notepad, and I scribbled what he had just said. “Okay, keep going.”
Oliver started over, his voice now more self-assured: “A month ago, I felt that I was in good health, even robust health. But my luck has run out—last week I learned that I have multiple metastases in my liver…”
From there, Oliver dictated the entire essay, nearly verbatim to the version that would eventually appear in the New York Times, the main difference between them being that his original included longer excerpts from his beloved philosopher, David Hume. It was clear to me that he had been “writing” this essay in his head over the past several days—and now, one perfectly formed paragraph after another spilled forth. It was astonishing. I handwrote, as rapidly as I could, as he spoke, typed it up that night, and brought it back to him the next morning. He spent several days tinkering with it, both Kate and I reviewing drafts, but then he set it aside. Oliver worried that his feelings were perhaps too raw, and felt it was too soon to publish it, given that most of his friends and family members did not yet know his news.
In lieu of any experimental treatments, Oliver made the decision to go ahead with a surgical procedure called an embolization, which would cut off blood supply to the tumors in his liver and therefore kill them off—temporarily (they would inevitably return, he was told). Surgeons would do two separate embolizations, one for each side of the liver, allowing a few weeks of recovery in between procedures. Dramatically lowering the “tumor burden” held the promise of offering him several more months of active life.
The first embolization was scheduled for mid-February. Literally as we waited in the hospital for him to be admitted for surgery, Oliver suddenly turned to Kate and me and said he felt the time was right to send the piece over to the New York Times. Neither of us questioned him; we just said, Okay. I went into a bathroom at the hospital and called our mutual editor at the Times on my cell phone and, confidentially, shared with him the news of Oliver’s terminal diagnosis. After Oliver had been admitted, Kate e-mailed the essay to him, and we heard back almost immediately: They wanted to run the piece the next day. We asked for one extra day—to get Oliver safely through the procedure first—and they agreed. Oliver’s essay “My Own Life” was scheduled for publication on February 19, 2015.
“My Own Life”
NOTES FROM A JOURNAL
2-17-15:
In post-surgery recovery: The only thing that briefly distracts O from the pain is when I read to him from a book on the elements. Cutting off blood supply to the tumors in the liver may sound somewhat benign, but the body revolts with full force against such an intrusion.
He repeatedly tears off his hospital gown because he is in so much pain that even the thin cotton material causes discomfort. The young female nurses act scandalized by this and keep trying to cover him up.
At one point, O yells out in exasperation, “If one can’t be naked in a hospital, where can one be naked?!”
I hear a nurse in the hallway join me in laughter.
I cover his genitals with a washcloth when the morphine finally kicks in and he falls asleep.
It takes until midnight before we get a hospital room.
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2-24-15—back home after six days in hospital:
“I am going to lie down on the bed, come and talk to me,” O says.
I curl up next to him, an arm over his chest, a leg over his legs. His eyes are closed, and for a moment I think he has fallen asleep, but no: “When you can’t tell where your body ends and the other’s begins, is that primal, or signs of an advanced evolution?”
I pull him in close, his head on my chest.
“A little of both,” I whisper.
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2-27-15:
I brought O a few of the letters and e-mails written in response to his New York Times essay:
I: “How’d it feel to read those?”
O: “Good!”
I: “You have about 800 more to go.”
O: “I’d like to see all of them.”
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2-28-15:
I looked in on O when I woke at 6:20. To my surprise, he was lying on top of the covers, his hands resting on his belly, and staring at the ceiling. Oh no, has he been like this all night, I thought, sleepless?
He heard me make a movement and noticed I was standing in the doorway.
“I was thinking about the brainstem,” he said in a clear, strong voice.
“Yeah?” I slipped into the room and onto the bed. He put his right arm around me. I could hear his slow, steady heartbeat—the heart of a swimmer.
“Yes, you see—” and, with his eyes closed as if seeing the pages in his mind, he proceeded to describe in the most careful detail the workings of the autonomic nervous system, gradually zeroing in on the topic of “a general feeling of disorder,” a state the body enters when the smallest change—whether intestinal, vascular, hormonal, neurological, cellular, “what have you”—triggers a “cascade of unwellness.” He used migraine to illustrate the concept.
He hardly took a breath for thirty-five minutes. I considered getting up to retrieve the tape recorder, but this might have disturbed the flow of his thinking.
> Finally, O came to a pause. “So, you see—just a few morning thoughts.” He chuckled at himself.
“Just a few.” I gave him a kiss on the cheek. “You have to write this out,” I said firmly, “and you’ve already got your title: ‘A General Feeling of Disorder.’”
He agreed.
We both breathed together for a half a minute.
“Now, if you would be so kind? Would you replenish my little water bottle and get me an Omeprazole? And then, my eye drops?”
“Of course. By the way, how did you sleep?”
“Very well, thank you.”
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Undated Note—February 2015:
Happily, so happily, back at the pool:
O, swimming, turns to me at the end of the lane: “Let’s do more.”
I: “Yes!”
How those three words define our life right now: Let’s do more.
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3-2-15:
On the same day that O had his biopsy, I learned that Ali’s shop is closing. Same old New York story: landlord raised the rent on the lease and his boss has to close the store. Fortunately, he also owns the “sister smoke shop” half a block down, and Ali will now work there. But if that shop doesn’t make it, that’s it.
“This is only America, this happens,” Ali railed angrily when he gave me the news a few weeks ago. “My country? Your grandfather own a shop, then your father have it, then you. But here?” He shook his head. “Here, you can have it ten year, twenty year, thirty year, and it’s not yours.”
I listened. I sympathized. I tried to be optimistic. “Maybe you should have a party on the last day,” I said. “Neighbors will come.”
Ali looked aghast. “You don’t have a party when you lose! No one want to come to that. You have a party when you win. We have a party when we start the other store.”
“You mean, when the Mayor of Eighth Avenue takes office at his new headquarters,” I said, teasing him.
“That’s right,” Ali said, “that’s right.”