IV. February 2014
I’m walking along the Berlin Wall Memorial, a half-mile of rusted iron poles running along Bernauer Strasse, dividing what was once East and West Berlin. The air is damp and heavy, snowmelt has turned the ground to mud. I’ve seen it before, the photo of the East German soldier hurtling to freedom across barbed wire, but here on a pillar it’s been blown up, and the caption identifies him as 19-year-old Conrad Schumann. Before they began to build the wall, the East Germans tore their city’s flesh with coils of barbed wire, invented by American ranchers (or a Frenchman intent on securing gardens, depending on whom you ask). But on Aug. 14, 1961, having stashed his loaded sub-machine gun and picked up a decoy, Schumann sprang, or jumped, or flew to a waiting car on the Western side, was whisked away, and eventually settled in Bavaria. And 37 years later hanged himself in his orchard. I know, it’s not much of a life story. There’s also alcoholism, a marriage, and 27 years on the assembly line at Audi. But that’s Conrad Schumann’s life; his story begins with barbed wire and ends at the end of a rope.
V. January - November 2012
I want there to be more to Dean’s story, before things start sliding downhill. There should be some spats, some indignation, some tender forgiveness; some stark reflection about making a second (or in Dean’s case, third) attempt at long-lived love, and perhaps a little bliss along the way. But at the time, in January of 2012, I wasn’t thinking that. I was too busy learning new words:
They seemed like words that had been acronyms in a former life—Laser, Scuba, Gestapo—only these were in witness protection. The consonants always seemed to be in the wrong place, and no one could keep them straight. Even the nurses scrambled them, scrupulously double-checking one another’s drug packs before every infusion. After a few months of taking chemo at home with no improvement, Dean had graduated to the infusion clinic, twice, soon three times weekly. He shlepped his laptop to the huge airy hall full of tipped-back recliners, each of which cradled a head, either bald or bewigged. Once in the recliner, he’d prop open his laptop, then doze off. Only some of Dean’s drugs were chemotherapy; others were the guilty enablers of chemotherapy; still others offered therapy for chemotherapy. The drug with the biggest personality was a cowboy everyone called “Dex,” short for Dexamethasone. It was a steroid essential for every protocol, which had to be taken even on “off” weeks. From his earlier illness, Dean remembered Dex causing rapid changes in body weight. In the coming months, Dean’s weight would range from 140 to 170, before it went irretrievably down, to the point where they used a special bed that doubled as a scale. When his middle swelled, it bothered him enough to go down to one piece of rye with half an avocado and skip the dairy-free, coconut pudding I cooked for dessert, but he never complained. In fact, he liked to show me photos of himself in many phases of illness—bald, bloated, rail-thin. Brandishing these photos was to show me he had plenty of whatever it took to survive.
Starting in mid-January, he took Dex every Monday. Tuesdays and Wednesdays he was jazzed up, moving fast, open for business late into the night—even the business of cleaning house.
Subject: Weird Dexamethasone side effect
Sent: 3:04 am
Apartment is vacuumed and kitchen and bathroom are mopped.
Every so often, jazzed and vexed, he went into “roid rage,” which was harder on me than on him. Once, when my kids were in another room, he shouted at me. “If you don’t make them wash their hands before setting the table, I’m outtahere,” and he stormed out to the lake. On Thursdays, the walls came tumbling down. He called it “Dex crash,” and when he wasn’t teaching, he lay on the sofa like debris. And though he often felt like debris, he timed his treatments precisely and (at least for the first year), never missed a class.
Chemotherapy is a delicate balancing act. If the dose is too large, side effects emerge, possibly dangerous. If it’s too small, there’s no hope for efficacy. Dean made careful notes about all his side effects, checking them against the pharmaceutical websites, monitoring patient forums. As long as what he suffered were side effects, he was not yet symptomatic. Side effects left right and center, with the disease at bay: That was his mantra.
I have been pretty out of it all day. I finally opened the vorinostat info packet to remind myself what the side effects are. The first two, most common, are: fatigue and digestive system effects, such as a changed sense of taste and loss of appetite, nausea, vomiting, diarrhea, constipation. ... Another common side effect a little lower on the list is lowering of blood counts including hemoglobin, which means anemia. I feel much much better about that, knowing that the anemia I’m experiencing is drug-induced and probably not the disease. I just don’t want to be anemic.
Each side effect came trailing an evil twin: Drowsiness, insomnia. Lassitude, excitability. Diarrhea, constipation. The flip side of the terrible leg cramps, which shot him out of bed, was a weird numbness in his feet. Since Dean never reported pain, he was never prescribed marijuana, even after the first dispensary in New Jersey opened a few blocks from his home in Montclair. Where pot had enhanced his thinking, these drugs muddled it, which scared him. Groping for clarity, he often skipped smoking pot for a day or two, which then became three or four—more, during hospital stays. When one of the drugs caused pustules on his eyelids so large he could barely see, the oncologist eighty-sixed it, but for weeks after, his eyes were swollen and red.
From my window I see a beautiful cliff only with blinders. Most of my view is downward into the Valley of Ashes.
He never lost his crazy white hair, though it coarsened and grew more unruly. His white tufts and cowlicks turned him into an aging Dennis the Menace.
Reducing the M spike, the indicator that plasma cells have turned malignant, was the holy grail. If, after three weeks on a drug, the bloodwork showed no decrease, they would add another drug to the protocol, and three weeks later, another. Invariably the news was not good, and he was pulled off the drugs, either because the side effects were damaging, or because the drugs weren’t working. During the weeks of “rest,” he performed, lectured, and traveled, and come Monday morning, the next regimen began.
The months of chemo wore on, and still the M spike rose. We adapted to the schedule of thrice-weekly infusions by thinking of ourselves as Very Busy People. Finding time together was tough—of course it was, for Very Busy People—but we managed. In October, after an “off” week, we drove to the Catskills to take in the mountains ablaze with red and gold. As Emerson once wrote, “My giant goes with me wherever I go,” but ours obligingly sat in the car while we hiked up to a ruined hotel and looked away while we made love on the top floor of an ersatz Swiss chalet. Dean left the balcony door open to hear the crickets, but the moon was full and I could see bats flying inches from the doorway.
“Bats!” I said propping myself up on my elbow. “Close the door!”
“Naaaah,” he said dreamily, running his hand up my spine and gently nudging my shoulder back down. “Don’t worry sweetie. Bats hate this.”
Monday morning, he went to the oncologist.
I told him about our great weekend - hiking, sex, etc. His conclusion: tough guy and I should be used as an example for all of the patients that say they’re too tired to do anything. I was about to explain about being a bad boy, too, but he had to go and I needed to meet with the scheduler.
In November he began asking Nan, the oncology nurse, to send him the M spike the day before his appointment; with the bad news out of the way, he’d be able to listen better to the doctors. Nan was the mother superior of the multiple myeloma clinic, a benign intercessor between patient and doctor, and he turned to her for late-night questions. Learning from Nan that the M spike was still rising, he replied:
Nan, thanks for the info. I wish it was different. My one question is,now that my M spike is climbing, when would one expect to see actual symptoms such as the itching, bone pain and loss of energy that happened when I first got sick? Is all of that about to start any time now even though I feel great right now?
The answer to your question is: it is very “normal” to feel exceptionally well even though your M spike is increasing. Of course, if we do not treat you and the M spike climbs further, you may become symptomatic. I don’t think you are in any immediate danger of having lots of symptoms right now. See you tomorrow!
The quotes around “normal,” were the quotes around our “life” together.
It was not a half-life, though we were together half the time. Nor was it a double life, though we lived in two worlds—the world of the cancer center, with its nurses, needles, and vitals; and the world of second-round, commuting coupledom, its late-night arrivals heralded by a one-word text as splendid as it was redundant: “Here!” There was no bread on the sandwich of our joined lives, no past or future to hold onto. We made no plans, beyond the next two or three weeks: a concert here (often missed to rest); a dinner party there (usually skipped, unless I went alone); a week’s visit to his sisters in California. Living together was not under discussion, and marriage did not come up, since our divorces, both in progress, absorbed whatever nuptial inclinations we might have had. No talk of timing our sabbaticals. When he said he’d never been to Rome, I didn’t reach for a calendar. I thought, and you never will.
My more protective friends asked, “Are you sure you want to do this?”—as if there are people who are sure they want to watch their newfound lover sicken and die. Others said, “Live in the present,” as if I had any choice in the matter. Breathe air; exhale carbon dioxide. Knowing that, in Victor Hugo’s words (via Walter Pater), “we are all condemned to death, but under a sort of indefinite reprieve” doesn’t make the rose redder, the gem-like flame hotter, the orgasm fiercer. The secret about being terminally ill, daily companion to fear, pain, and sorrow, is that they never become dear to you, unlike your lover, your child, your terrier with the ears that never fold. Woken up in the middle of the night, you’d choose pleasure over wisdom; living, over learning how to live—and either, over learning how to die. When Dean and I took turns reading Tom Robbins’ Fierce Invalids Home From Hot Climates in bed, we wanted to get all the way to the end. (We didn’t, and there’s a bookmark where we stopped.) We had less to argue about than other couples, but our pleasures were purely sublunary, happy to make dinner, happy to make love, and happy to fold into one another, spent, because we had returned one another to life, and we only wanted more of it.
We were old and in love. I was afraid that if Dean died, it would seem like last night’s dream, then last month’s, last year’s. His leg crossed over mine, between cramps.
The best-case scenario was terrifying.
Dean had already had an auto-transplant, his stem cells removed in a process much like dialysis. After several days of near-lethal doses of chemo, his own cells had been replaced, inaugurating a slow three-month recuperation. But auto-transplants were simply a way of setting the clock back, of putting some daylight between patient and relapse. In an allo-transplant, however, the patient receives stem cells from a disease-free donor—perhaps a family member, more likely an anonymous benefactor. And only an allo-transplant raised the very slim possibility of emerging free of the disease. Unlike auto-transplants, allo-transplants involved a high risk of rejection: One in four patients died, and of the other three, two loped along with relapses, for however many years the fates allowed. Only one in four appeared to be free of disease—“so far,”added Dr. Dorado, the transplant specialist, since her research base was tiny.
Shortly before we met, when Dean was still in remission, Dr. Dorado had called to announce that they’d found a donor, “a nine out of 10 match.” Suddenly an allo-transplant was on the table. He’d be in the hospital for three weeks, then live in a residence beside the hospital for three months, then after four to six months of recuperation, if all went well, he could resume his normal activities. Dean had turned it down on the spot and only as he was leaving asked (since she was all of 35), “If I were your father, would you advise me to do it?”
She cut to the chase. “If it were me, I wouldn’t do it.”
Now he was back in her office to review the intervening months: nearly a year of ineffective chemo, a rising M spike, an aggressive form of the disease, but evidently no symptoms.
“We have another donor,” she said. “Not quite as good a match, but a very good one.”
“What happened to the last donor?” he asked faintly.
She waved her hand in the air, as if to say time moves on. “But before we can go ahead, we have to get your M spike down.”
“How. Far. Down.”
“Way down, less than half of what it is. So, for now you’ll continue your chemo with Dr. Schwartz, and we’ll check back in January.”
“And if it doesn’t go down?”
“One thing at a time,” she said reassuringly. “For now, chemo. But one option is to do another auto-transplant, wait two months, and then do the allo-transplant. People do best when they stay close to the hospital for a while after. I’ve seen people an hour away decide not to come in with problems, always a mistake.”
The doctor’s voice receded; in my mental cinema, the failure movie was getting under way. Failure before the auto-transplant, or after; before the allo-transplant, or after; tissue rejection; even nine months of effective, state-of-the-art transplantation, followed by relapse. On the double bill was the movie of Dean, pale and sick in bed … for six months? Nine months? In my home? In his? And what if the nine months were followed by relapses, and relapses, and relapses? Was I going to spend the rest of my 50s—my 60s too—nursing a very sick man I had known in good health for five months? You don’t have to do this, said the voices.
But I didn’t know what this was; that was the this, the not-knowing, the no-fucking-idea. The stunning, utter ignorance amid screens full of data, research, expertise. In this dimness, one thing was clear: Dean needed me, but that is not why I took this on. Nor did I do it because I’m a hero or saint—I’m neither—nor because I needed to act like one.
I did not do it because I loved him (though I did).
I did it because Dean brought me close. So close, that given a chance to be even closer, I ran toward it, a firefighter running to flames.
VI. December 2012 – February 2013
On the day between the end of Hanukkah and Christmas Eve, a sort of holiday no-man’s-land, we exchanged gifts. Dean went to the closet and pulled out a large box from Best Buy; he must have been feeling tired, because he slid it across the floor to me. He always gave practical, generous gifts—flatware; a teapot—that proved he knew exactly what I needed. He usually did, and here they were: speakers for my bedroom.
“Fantastic!” I said. “Now Partch can come and sleep with us. Joni Mitchell too.” I handed him a ribboned box. “Open it!”
He grinned and held my gaze, tugging the silver ribbon. The bow came apart, the box yielded and nested in tissue paper was a small wooden toy with a handle, which he recognized immediately.
“A bullshit grinder! Like my father had in his office! The one my sister tossed out in the trash! No way!”
“Yes way!” I said, “I found it on Ebay…” but he was already grinding away happily.
“What a practical gift!” he said. “You are a seriously good girlfriend!”
In mid-January, the fevers began. It was weeks before I’d start to say “the fevers”; Dean never did. Instead, he was “running a low grade fever,” “feeling shitty,” “feeling shitty since god knows when.”
I knew when. On Jan. 13, lashed by a headache, his hands clammy, he’d taken his temperature, which was 101.2F. He could barely get up from the sofa and asked me to cancel our dinner reservation. While I cooked rice and beans, he took two Tylenol and snoozed on the sofa. Ever since, the thermometer lay on the driftwood table in the living room, along with scraps of paper on which he recorded his temperature and the time he took Tylenol.
He’d been told to hold off on Tylenol until the fever hit 101, but by the end of the first week, a fever of 101 to 103 had become the norm. He scheduled his Tylenol as cannily as he scheduled getting the instruments offstage into the truck after a concert. As soon as the Tylenol kicked in, he raced off to teach his counterpoint class or drove to the cancer center, returning just as the fever was peaking again. Dr. Cecil, a lean oncologist with a Van Dyke beard and piercing blue eyes, referred him to an infectious diseases doctor to rule out dengue, malaria, and a fever that had gone by the names of several faraway places—Mediterranean, Gibraltar, Crimean fever, Maltese—that Dean had never visited. All the tests were negative, “which is good,” the oncologist said.
Exhausted, Dean wrote to his friend Maury in L.A., a salsa trumpeter and ghostwriter whom he’d visited in jail in the 60s, when Maury copped to cocaine possession. (When I met him recently, Maury delicately referred to himself as “a former cocainist.”)
Maury, today I not only deleted my linkedin account, but facebook, too. I have no compelling reasons to be a part of either, and more especially linkedin. I hope you’re well. I’m really struggling. Strong chemo and a fever for the last several weeks that is inexplicable and incapacitating especially combined with the chemo. None of my docs know why I have a fever. They don’t think it’s the cancer, the chemo, a bacteriological infection, or the flu. Meanwhile my temp peaks above 102 and I have chills and hot spells. Lots of tylenol.
Maury wrote back asking if it might in fact be the disease itself.
Thanks for putting your two cents in with my world-class docs, Dr. Watson, but your guess is probably off. It’s more likely I’m being attacked by a rabid, phosphorescent dog.
Fever hounded Dean day and night, biting away his strength, his color, his libido. When we went to bed, before he drifted off to sleep, his hand made love to mine—a brushed palm, a pulsing thumb. When he woke in the night on soaked sheets, I made love to his forehead with a cool washcloth. While he dozed on the sofa, I made love to his sheets, throwing them in the wash and replacing them with cool, dry ones.
The day Dean’s fever hit 104.3, the nurse on call summoned him to the ER. Thus began a numbing routine, to be repeated many times. We’d sit in the ER waiting room with hockey-puck victims and flu patients; then he’d be put on a stretcher, hooked up to monitors, and wheeled under a four-inch teeveescreen that could not be shut off. Then they’d tap him for vials and vials of blood, checking his date of birth with each one. Invariably, we’d be told that Dean’s hemoglobin was dangerously low, and an intravenous transfusion was begun; when it reached nine, he could go home. (What we were not told was that all the dark, leafy greens in the world wouldn’t raise his hemoglobin, since his bone marrow was simply not producing it.) Some hours later, once the transfusion jacked up the hemoglobin to nine, a sneakered resident would fist-bump Dean, as though their team had scored a three-point play, and we’d head for home. The ER visits took about six hours, long enough for Dean to summon Walker in Brooklyn, who would drop everything, pack a sumptuous vegetarian dinner for him and Dean, and drive to Jersey.
I had only met Dean’s son and daughter twice before his illness, but after the first transfusion, I put their numbers in my phone and soon tagged them as “favorites.” Both in their 20s, starting out in work and love, they were at once young and ancient, benign gods who had survived the collapse of a faith—their parents’ marriage—with their powers intact. At their age, I had watched my flamboyant, 50-year-old mother pinned to a hospital bed by metastatic cancer, and I heard in their calm, reassuring voices a familiar blend of hypermaturity and bewilderment. Walker was making a go of it as a drummer-composer-improviser, playing in bands with names like “Cloud Becomes Your Hand” and “Landlady.” Dean saw in Walker his own youthful commitment to a life in music, and a good deal more wisdom: “He’s always been a wise man, Walker, Zen since birth, he has what it takes.” He worried about Walker biking through Brooklyn at all hours, panicked when he had an accident, but when a handsome settlement came in, Dean was all proud father: “Waytogo, Walker! Way-to-go!”
Rosie, training to be a special-ed teacher, thought of herself as the only non-artist in the family, but Dean disagreed. They’d collaborated on an oratorio, Rosie writing the libretto and Dean the score, and he thought she’d be a great writer of children’s books, if she put her mind to it. Her dedication awed him; she was already finishing her MA and student-teaching. “She has a gift,” he told me the day we met. “She can reach any kid at all, and she’s doing what she was born to do.” Rosie had recently moved to Boston to start a new job. Dean knew that visiting him was cutting a jagged piece out of her new life, but he couldn’t mask how comforted he was to have her near, offering him hot minestrone and vegan arepas. As she scanned him on the sofa, shaking with fever, Rosie’s dark eyes took in everything and held it fast.
Dean could no longer drive down to Princeton; even shlepping his laptop and a basket of dirty laundry was out of the question. So, I flipped my inside-out life on its head, staying with him several nights a week, and driving to Princeton to teach. I downloaded books for the road, invisible books that were existentially thick: Guns, Germs, and Steel; The Swerve; The Warmth of Other Suns. Back in Montclair, I cooked dandelion greens, shucked mussels, stirred oatmeal, and yearned for my fireplace and my deck looking down on the frozen lake. While Dean slept, I prepped for my classes. Moby-Dick was a wonderful solvent of misery, but Pope’s Essay on Man—“Whatever is, is right”—filled me with contempt, as it had Voltaire. Instead of writing Candide, I went to Whole Foods, consulting Dean’s fastidious list on my iPhone:
If you want to bring and cook fresh sardines or oysters tonight, I’m OK with that. I’ll go to WF and look at canned stuff when I can, but do not want you to attempt to do that for me.
All below, if organic, otherwise no:
Dried Split peas
Dried black beans
Canned black beans - plain. not refried - 365 brand fine
Dried apricots and/or figs.
Greens in this order, but looking fresh raises vegetable on list and looking not so fresh lowers....from section of whole heads of veggies, not in plastic boxes: Four bunches is ideal, no more.
Please don’t get spinach.
baby organic kale in box
coco bliss- plain coconut and/or vanilla
The red damask sofa became command central for Dean’s various lives. There he texted shopping lists, corrected counterpoint exercises, made flight reservations for an upcoming concert in Ohio, assembled promotion materials, and consulted to an ensemble in Germany who were building replicas of the Partch instruments.
About three weeks into the fevers, a percussionist Dean knew mentioned an old friend who wanted to discuss a collaboration with Dean; “Mind if I pass on your coordinates?” Lying on the sofa, Dean was too tired to mind, and the next day Paul Simon wrote about using the Partch instruments on his next project.
The Paul Simon, as he told his kids and I told mine.
I wasn’t there when Dean showed him around the studio, letting Paul Simon’s ears try on the various instruments. Whatever he heard, he must have liked, since he emailed Dean two songs-in-progress—mostly guitar and percussion, with a high wordless vocal already laid down by Bobby McFerrin, but no melody line. Dean was to come up with zoomoozophone and harmonic canon parts for both songs, and Paul would come down to the studio in late February to record.
Like a CEO calling in his operations guy, Dean put the matter to Dr. Cecil: He had a recording session coming up with Paul Simon (yes, the Paul Simon); what could he take to clear the fever for 12 solid hours? Cecil was all business: Skip the Tylenol that morning and double down on naproxen. It would simply hold off the fever, and Dean could expect to sweat the whole night, but it was worth a try.
Paul was expected at 11, and his assistant and sound engineer set up while Dean and Gerry, another member of the Partch ensemble, rehearsed. Dean had spent four weeks writing complete parts for two instruments for both songs, and he propped the pristine scores up on the cornflower glass stands Partch had made for his instruments. I was sitting on the coffee-stained studio sofa. “Bring a book,” Dean had said, “because we might be using headphones and we won’t have them for you.”
The Paul Simon arrived, a small man in a black zipped sweater and black fedora, with impeccable posture. He greeted his people, quickly shook hands with Dean, Gerry, and me, and said, “Let’s hear.” Hearing his voice in my ear was uncanny, since it was already there, and had been most of my life—at summer camp, as a moony sophomore in college, as a nursing mother up at 3 a.m. Even in the anguish of my separation, Julio, Al, and Graceland sang in my heart; my bones. But if I felt like the child in this reunion, Paul Simon was not the mother. He hadn’t come today to acknowledge my devotion; that I even paused to realize this was (and is) mortifying.
Paul stood a few feet from Dean, listened once to the score Dean had written, and nodded and paced. Then he said, “I like this but I think we don’t need the music on the verses at all. Let’s try it with you coming in at the refrain.” Dean swallowed hard, smiled, and said, “Paul, I checked my ego at the door.” They played the refrain about a dozen times, with Dean and Gerry at first hewing to Dean’s parts, then improvising—a little more treble here, a little more rumble there; rephrasing, refining. Then the engineer played it back, on top of the guitar, percussion and now Paul’s vocals.
It was the soft, sandy Paul Simon voice, singing about insomnia, a prayer for sleep addressed to the man in the moon. Dean had imbued Paul’s song with an unearthly shimmer, thrusting it into a zone of pure moonlight, while Gerry’s notes on the zoomoozophone fell in silver stars. “What do you like?” asked Paul and for the next seven hours they played and chose, played and chose, a phrase here, a cadence there, sometimes individual notes picked from different takes. The second song, still without vocals, was more rhythmic, and Gerry played the Cloud Chamber Bowls in a dotted, loping beat. Paul listened standing, and talked standing, and paced, listening; once or twice he sat for a few minutes, but he soon resumed his listening stance, head cocked. Twice they broke for a few minutes, chatting about colds and coughs and backs and stamina. Dean said at one point, “I have cancer,” and Paul said, “I know,” and recommended an oncologist in L.A. Drawing a half-used bottle of American Ginseng from his vest pocket, Paul handed it to Dean: “I have more, take it.” Around 3 p.m. Paul’s assistant went out for coffee and a salad, but the salad was still sitting at 7:15 when Dean had given far more than I’d thought he could, and Paul had what he wanted. Wires were unplugged; coffee cups tossed out.
“It was a privilege, Paul, a privilege,” Dean said, his eyes already glassy with fever. They hugged, lingeringly, like people who knew their time together was mostly behind them.
Dean and I went home, ate some soup, and crawled into bed by 9:30. “Read me something,” he said, handing me a book, and I opened to a poem by Du Fu called, “Farewell to Mr. Zhang.”
Leaning on my son
and on my staff as well
because I have been sick
through autumn into winter
my hair is white and now
I rarely wash it
my winter robe
too big for me, too long
I see you are afraid
that I will die
so both of us are tearful
at this parting
as we know as much about our future
as waterweeds do theirs
listen, when you write
Dean laughed. “He’s so fucking great—write legibly!” but he could see I was crying and turned and caught my tears with his thumbs. In less than an hour, as Dr. Cecil had predicted, the fever came on, hard and hot. He sweated all night, which soaked the sheets and woke him up. I changed the bedding twice while he lay on the sofa, reading Emma; back in bed, he couldn’t sleep. The night was bright and the man in the moon had his hands full.
VII. March 2014
The Protestant Cemetery closes at 1 p.m. today, a fact I’d missed in my Roman guidebook. So, I’m moving purposefully among the gravel paths, not striding exactly, but not meandering either. Last time I visited Gramsci’s grave an homage of cigarettes had been placed there, but now only a rose, as if Gramsci had finally quit smoking. The sun is hot for March, but it’s shady here, as I wend my way among the German consuls and British matrons. When I reach the tomb of 16-year old Rosa Bathurst, still elegant while drowning in the Tiber, it’s 12:45; over the PA, a lone guitar takes up the theme from The Deer Hunter. It’s kitsch, but its sadness finds me anyway. Here, near the immense, scaffolded pyramid, are the twin stones of John Keats and Joseph Severn, buried six feet and nearly six decades apart—fraternal twins, a lute carved on Keats’ stone, and a palette on Severn’s. And there’s the tomb of Percy Shelley’s heart, which Edward Trelawny wrenched from the pyre when the poet’s corpse was burned on the beach. On the stone a quote from The Tempest: “Nothing of him that doth fade/ but doth suffer a sea-change/ Into something rich and strange.”
VIII. March 1-16, 2013
In early March 2013, Dean began to suffer a sea-change. He was weak, sometimes barely able to get water for his Tylenol; his usual dark complexion was pallid. Sometimes fever caught him unawares, and he shook on the couch, wrapped in blankets, waiting for it to abate. When I said I was uneasy about being away from him for two nights, he was annoyed. He was fine; he’d be fine. All day Friday I checked in with him from Princeton: “Fine” at 3 p.m. and again at 7. At 11 p.m. I called to ask after his fever. “The usual,” he said impatiently, “no big deal. I’m fine.”
Saturday morning around 9:30, while I was packing to drive to Montclair, the phone rang. “I fell,” said Dean, his voice faint and brittle. “Taking a shower. I was too dizzy to get up, and I lay in the tub for about half an hour. Then I crawled to the sofa.”
“God, are you OK? Did you hit your head? Where are you?” I blurted.
“On the sofa; no, I didn’t hit my head.”
“I’m coming,” I said.
When I arrived an hour later he was lying on the sofa, too unsteady to walk. Only then did he confess that he hadn’t eaten since Thursday and hadn’t been drinking either; he was just too weak to walk to the kitchen. I fetched the thermometer, stranded on the bathroom counter; his fever was 103F. “This is getting a little scary,” he said, speaking for both of us.
A little scary: blacking out on the tile floor, alone, unable to call for help.
He didn’t want to go to the ER, but when I insisted, he didn’t argue. “Do you want to bring a book, Dean? Maybe they’ll admit you.”
“They’re not going to admit me,” he said dismissively, “that’s not what they do.” But I packed his laptop and threw Emma into his backpack. For the first time, he leaned on me down the hall, in the elevator, and let me help him slump into my car.
This time we bypassed the hockey-puck victims and flu patients and were taken directly to an exam berth. By 2 p.m. they decided to admit him; at 5 p.m. they were “just waiting for a bed in the ICU.” Dean’s blood pressure was dangerously low, said the resident, and they were having trouble getting it up. He needed red blood cells and platelets stat and was high-risk for a fall. “If we can’t get your blood pressure up,” said the resident, “you’ll need a PIC line inserted into your neck.”
Dean seemed familiar with the term. “Fuck,” he said, his hands flying up to protect his neck. “Let’s hold off on that.” The threat of the PIC line must have raised his blood pressure, since it never became necessary.
When I arrived at the ICU the next morning, he was sitting at his laptop. He barely looked up. “I’ve been getting a lot of work done,” he said.
“How are you feeling?” I asked.
“OK,” he said curtly. “Tired. Hard to sleep here. But I’ve been getting a lot done.”
At night he would email me lists, things to bring to the hospital:
Vitamin B with measuring cap that’s probably in dishrack
Muscle relaxant that isn’t baclufen
Bottle of fizzy
My knapsack. I don’t need anything that might be in three big compartments closest to shoulder straps.
On admission, he’d been told to hold off on Palmarest pills, his current chemotherapy drug, but he wanted them by him so he could resume the moment the doctor gave him the green light.
Now the junior oncologist in the group, Dr. Fixler, stopped by and stood at Dean’s feet. “How did it go with Paul Simon?” he asked.
“Great,” said Dean, a little surprised; he’d told Cecil, but not Fixler. “When can I go back on Palmarest?”
“I’d give it a week,” he said. “Let’s get you stabilized.”
“What’s my M spike?”
“We’ll check before your next appointment. For now, we’re monitoring you”—he pointed to the TV screen with four jagged, pulsing lines—“for heart rate, oxygen, and blood pressure, and checking for hemoglobin, platelets, etc. The basics,” he said, a helpful summary.
“Because I’m just waiting for a transplant,” Dean announced, like a man with a reservation at Le Bernardin. “I need to be on Palmarest.”
“Not for now, we just have to get you over this hump,” said Fixler, “I’ll be back on Wednesday.”
Each morning Dean stood at the sink to shave, and even bent down to pick up socks, but after six days in the ICU, he still hadn’t walked down the hall. Each time the physical therapist came in, he’d politely decline. I realized he was scared, even with a “chair follow”—a therapist following with a chair in case of a fall. The day he was released, the social worker offered a wheelchair, a shower chair, and a walker, and I took them all. Dean was incredulous.
“We don’t need all this shit!”
Fear clawed me, and now it lunged at him. “You want me to take you home?” I sneered. “Well, if so, we’re taking this stuff too.” When the orderly came to escort him to the car, he obediently sat in the wheelchair. But when I pulled up at his building, he told me to pile the bags on the wheelchair; he would walk. And he did, through ankle-deep slush, in a mean, cold rain.
The truth didn’t dawn on me. The truth is an early riser and when I finally blinked awake, it was glaring.
We were playing cancer chicken. Who’d be the first one to say, “There’s no normal for us, any more, not even ‘normal’ ” or “How do we live this thing that only one of us will live through”? Two points were clear: Dean needed care, though exactly how much was hard to say; and I was drowning.
When I’d told him, back in December after the transplant consult, that I’d care for him during the months following a transplant, my fantasy had been elaborate. At first, cheering signs of recovered strength and wholeness, tiny surprises, which I’d have to point out to him. Then I’d come home one day and he’d show me, with bravado and pride, that he had already done a half hour of Tai chi. I’d snap a picture of him and his spear, post it on Instagram, then we’d have a 10-second kiss and laugh about how long ago all that seemed—that wheelchair, that walker, that dreadful commode. With fanfare, I’d donate them all to the local rehab center. Next, slow and sure progress toward a normal (not “normal”) life—and then we’d be there: working, cooking, hiking. Loving.
But this was not that: Night after night, day by day, Dean growing weaker, hotter, frailer; losing his flippancy, lust, and hope. Becoming strange to himself, and to me. The prospect of spending seven days a week with him, and seven nights with my cheek on his burning chest—helping him to the sofa while I changed the sheets—made my throat constrict. Fighting for Dean left me fighting for air.
One day while I waited for Dean at the PET scan clinic, I turned over a manila envelope and sought out the words to tell his family that I couldn’t be with him seven days a week. I would stay with him in Montclair Thursday through Tuesday and … then what? We all knew that Dean wouldn’t tolerate an aide in his one-bedroom apartment three days and two nights and that no one in the family was available to do it. Was Dean, who refused even to discuss the idea of a medical leave, still in charge? Was I? I was no longer just cook and laundress and grocery shopper. I’d become the signaler for the Dean railroad, logging visits, making clinic appointments, dispatching group emails to his family, and talking late into the night with Adina, his physician sister in California, while Dean tossed in bed.
While I scribbled, Dean came out with a nurse, signed a form, and sat down beside me. He didn’t look at me, fighting back tears. “I’m lying there in the machine and all I can think of is pizza … pizza … pizza.” He hadn’t eaten wheat since his stem cell transplant nearly two years earlier.
“Oh man, let’s get you a goddamn pizza,” I said, and helped him up, and we headed for the cafeteria. Somewhere in the middle distance my mother, balded by chemo, was walking down the icy steps of a brownstone. It was the salon of Fraydl the wigmaker, her ticket out of bandanaland. “Pastrami,” whispered my mother, who hadn’t eaten meat for 14 years. “All I could think of in the salon was pastrami.” At the deli, the pastrami was fatty and warm and hard to enjoy.
The pizza tasted charred.
I never asked Where are you going to live? because it meant Where are you going to die? If Dean died in my house, I would have to sell it and start my exile all over again. I did not want Dean to die in my house.
Two years after leaving my marriage, I scraped together the money to buy it, leaning on the largesse of my ex, my brothers, and my university, and I’d spent two more years trying to make it feel like home. Living there was still strange to me, like housesitting for someone whose taste was strikingly like my own—someone I’d probably enjoy meeting, once she returned from her travels. But home was … say it … a half mile away where my ex and his girlfriend were sitting on the deck eating barbecued salmon with our mutual friends.
But by mid-March, Dean was with me in Princeton. For now. Until it stops working.
It was his spring break, and Dean’s refusal to request a medical leave was driving the family frantic. One cold Sunday morning, we sat on my deck, the space he’d cleared for Ba Qua still empty. “Here’s the deal,” I told him. “We need an aide in here when I’m out teaching.” At first he protested, until Adina called him to say, “Just do what she tells you to do.” (She also wrote me a message: “From the bottom of my heart, I thank you for entering all of our lives.” With these words, she entered mine.) The agency triage nurse posed a barrage of questions about “needs of daily living”—eating, toileting, bathing, dressing. Dean rolled his eyes, but before he could become truculent, I interrupted. “Look, you can see this is not at all what we need; he’s 64 and in command. We just need someone to bring him a cold washcloth for fever and keep him safe.” “Keep him safe” sounded reassuring, even when I said it myself, but it really meant someone to call 911 next time he falls.
On Tuesday Eugenie, a young Nigerian woman with a Bible stuffed in her smock pocket, arrived; Dean studiously avoided her the entire afternoon. When I came home on Thursday, well before Eugenie was due to leave, no Eugenie. Dean lay on the sofa complacently, watching The Searchers; I wondered if he had eaten her.
“Where’s Eugenie?” I asked.
Without taking his eyes off John Wayne, he waved his hand in the air. “She tried to preach to me, and she was outta here.”
To my vast relief, Adina flew in from California. She would get us in gear, she said, get Dean to a safe place,and we sat over tea in my kitchen while Dean snoozed on the sofa. Adina looked nothing like Dean; she was a worn-in beauty, fair and freckled, with hazel eyes anchoring her delicate face. In her wise-woman presence, the hysteria I had been tamping down for weeks came unloosed. I can’t do this 24/seven, and how will he manage, and what is he thinking and how could I tell him. . .
Adina asked, “Have you discussed it with him?” No, I hadn’t. How to start? What to say? Over all my attempts to help him, Dean had thrown nets of denial, and I was trapped. And yet I’d trapped myself, so ashamed of denying him—my sleep? my lifeblood? my home to die in?—that I was betraying him. We kept to our agreement, he’d once said; no false bottom. I hadn’t kept to mine: My false-bottomed boat, drawn by the swift downward current, concealed a contraband of 14-karat terror.
It was Dean who started the conversation. He was lying face-up on my bed in his Tai chi pants and a mauve T-shirt awaiting the energy to put on his shoes. It would come from somewhere. I lay down beside him, propped up on my elbows; it was that or throw my arm over his protruding ribs.
“I called my Chair,” he said, “and told him Jim would take over my classes.” I was surprised and relieved; no more anguished discussions about medical leave.
“That’s big,” I said. “Rosie just said to me yesterday, ‘My dad will have time to compose if he takes a leave.’ ”
“I can’t compose,” he said stolidly. “But I’m going to revise parts and organize my scores, I’ve been meaning to do that for awhile.” He paused. “So that someone could just pick it up and go from there.” He was imagining his music without him.
Is it lonely, to be thinking that? Did you think to tell me?
“So, I want to talk to you about the next couple of weeks,” I said.
Dean was matter of fact. “Well, now that I’m not teaching, I can stay here in Princeton with you.” In the pit of my stomach an excavator was digging, digging.
“I’m on break next week,” I said, “so we’ll hang here, and then Sunday we’ll drive up to Montclair and I’ll stay till Tuesday when I teach.” I took a deep breath. “And then I’m going to need a couple of nights to myself each week, Tuesday through Thursday. At least till the semester is over.”
I searched his eyes; no sign of rancor or surprise. He searched mine and must have seen dread, because he brushed his hand over my hair, a parent reassuring a worried child. “Don’t worry, I’ll be fine. I just figured out how to order groceries online.
“Organic,” he added, sat up, and reached for his socks.
IX. March 17, 2013
We shouldn’t have gone. He told us to go. We shouldn’t have gone.
But he told us to go, and we went, Adina and I, on Sunday morning, March 17, to take a short walk around the university.
He was moving very slowly that morning, resting between tasks. I made his breakfast—toast, avocado, soft-boiled egg—and laid a plate over it to keep it warm. After 10 minutes, he hadn’t come in. I found him sitting on the bed, staring at the floor, scowling.
“What’s wrong?” I asked.
“Pissed off,” he said, “I honestly can’t remember if I already took my Tylenol.”
“You probably didn’t if you can’t remember,” I said briskly, “better to take it than skip it. We’ll wait till you sit down to breakfast and then go.”
“Naaah, just go,” he said gruffly, and we went.
As we walked past the casement windows of the residential colleges, Adina admired a bronze star cemented into the masonry. “That’s for Princeton men fallen in action,” I said, and she took a picture. She would send it to me months later, with the date scrawled in the margin, and I cried for all our fallen.
When I opened the kitchen door, I saw Dean’s breakfast untouched on the table and ran toward the bedroom. He was lying in the hall on his side, still in his Tai chi pants, his arms stretched out into the guest room. He was shaking and crying, and when I knelt down, he yelled “Fuck!” loudly, enraged. “Fuck!”
“Sweetie, darling, what happened?”
“Can you believe that?” he said, spitting the words. “Someone broke in here and kneed me in the head! Kneed me in the head!” His lip quivered, a child hit by a stray pitch while dutifully monitoring third base. “Came from behind and knocked me down. Who would do that?”
“Oh my God! Who, Dean? Who did this?” He trembled with fever.
Adina knelt down at Dean’s head. “Dean, you fell,” she said softly, and to me, more softly: “I think he’s hallucinating from fever.”
“No, I didn’t, Adina” he said fiercely, “no, I’m not. Someone kneed me in the head! Someone knocked me down!”
I went to call 911, and Adina sat down and cradled him in her lap. “Dean,” she said, stroking him with her calm voice, “Dearie, you’ve had a fall, and we’re going to take care of you. Stay awake, talk to us.”
“Who would do that?” he said, over and over again.
While we waited for the ambulance, Dean lay between us, repeating his story, his anguish mounting. “I was just walking into the other room to play my beloper.”
Adina jerked her head up and looked at me. “What, Dean?” she asked.
“I mean bay my onlooker.”
“Dean, honey, what are you trying to say?”
“I’m trying,” he said, “I’m lying, I’m trying but tavving tub.. tubble.” A beat. “I had a healthy shit,” he said clearly.
With Adina interjecting here and there, he began talking insistently, nonstop, nonsense. “Slarto, Adina, it’s slartemy, right away, I mean blartemy runk so sulty.”
“Do you know who I am, Dean?” she asked.
“Of course.” He’d be asked that many more times, by many people, and his answer was always the same: “Of course.”
“Do you know who this is?” Adina said, pointing to me.
He said my name.
The doorbell rang, and a policeman came in with large black bag, and right behind him the EMS team. While the policeman asked me questions, they filed down the hall, and a dozen arms were on Dean, taking his blood pressure, checking his pupils, listening with a stethoscope, and rolling him onto the transport board.
“How’re you doing, Dean?” said the EMS captain, with a quarterback’s smile. “I’m Richie.”
“Hey,” said Dean, smiling wanly. “I remember you.”
Within three hours, still in the ER, Dean had recovered his speech, and for the most part, his lucidity. When the neurologist asked what happened, he told her that an intruder had kneed him in the head. He would keep up the story for the better part of a week. When Walker and Adina’s son Martin visited, Dean asked Adina and me to step out: “I need to talk to these guys. Alone.” She and I lingered in the hall a few minutes, imagining a “take care of the womenfolk” talk, till the two cousins emerged with loopy grins. “He made us promise to check the perimeter of the house,” they said, giggling, “and we promised.” That night they did and duly reported back to Dean: No sign of a break-in. The next day, when an internist asked Dean what happened, he paused to gather his thoughts. “What I think happened, didn’t happen,” he said carefully.
X. March 2014
The next three weeks were not a blur—not then, and not now, in this chilly kitchen in Berlin where Adina sits beside me, waiting for tea to brew. It’s mid-March; winter’s imperium can’t go on much longer, but the bare lindens are still bowed. Cloudy all day, but for a bobbing yolk of sun as rush hour came on. We stopped for gluhwein in an outdoor café, wrapping ourselves in striped blankets slung over the chairs, then walked home in twilight. For all its spectral Klees and tender Picassos, Berlin’s a city burned at the stake, and what’s risen from the ashes—neon pavilions and helixed towers—leave glassy splinters in the heart. Adina will wake up tomorrow having dreamed about Dean again, the press of his bony shoulder still smarting, enough to bring on tears.
“You were there too,” she says, trailing off.
I was there too.
XI. March 18-April 6, 2013
After his fall, Dean’s spring was an arabesque of disasters and disappointments, hairline improvements offset by abysmal setbacks. There was no good news; just “good” news, at odd moments. Dean was at Princeton Medical Center, getting transfusions throughout the day, sometimes two and three units at a time. The omnipresent bags of red blood took four hours to flow through; the smaller bags of platelets, 20 minutes. Every time his blood levels would reach normal, they’d drop again, and the round would start over. “Transfusion-dependent,” remarked a young resident early one morning, to no one in particular, as Dean slept on.
Even though the “bleed” in his brain “resolved” (to do what?), each day he picked up another diagnosis. In this nightmare of “Go Fish,” Dean pulled the card for lung effusion, and another for a leaky mitral valve in his heart; still another for a tremor in his right hand. His left side was stippled by ugly yellow contusions from his fall; his left ear was purple. Every third day, the IV line would be removed and inserted elsewhere, leaving behind a brown field of bruises. As the weeks wore on he looked as if a muddy leopard had walked over him. When I reached behind him to massage his back, his spine stood out at attention; his shoulders grew bony, his ankles looked large below wasted calves. I stopped asking about his weight but overheard that it was 124.
Every four hours, all through the night, nursing assistants came to take vitals. Beyond these disruptions, there were the “snakes”—Dean’s name for the inflatable plastic leggings that filled and hissed empty all day and all night, unless a nurse was careless enough to forget about them. Like the snakes, the room filled up on Friday night and emptied out on Sunday night. Walker drove down from Brooklyn as often as he could, skipping gigs and turning down tours. Rosie left Boston the minute school ended on Fridays, lasering through sleet and traffic to sit by Dean’s side and hold his hand.
All the “needs of daily living” questions we’d dismissed—eating, dressing, toileting—were now yeses. Dean still shaved himself, rigging up a mirror to the wheeled table. It took the better part of an hour, but the result was formidable. He picked up his phone from the table and snapped a picture of himself, unsmiling, then showed it to me. His reading glasses, red as the tubes of blood running into his veins, looked large on his face. (Perhaps they look large on mine, too—I’m wearing them now, with new lenses.) “Not bad,” he said, sparing me the need to comment. One day his oatmeal, with two tiny pots of half and half stirred in, grew cold while he dozed. I roused him and told him to eat.
“Too tired,” he said. “Not hungry.” I asked if he wanted help.
“What kind of help?”
“You know, like this,” I said, lifting the spoon to his mouth. To my relief, to my horror, he opened it and let me feed him.
One morning when Dean just couldn’t be roused, Adina called the family to gather round. Rosie and Walker were already en route; Dean’s brother Tony drove down from Boston, canceling a concert of the gamelan ensemble he conducted. They arrived at around 3 in the afternoon, to find Dean sitting up in bed, greeting each of them by name. By 4, he was cracking wise, ordering sushi for us all on his laptop. What we had assumed would be a deathbed had become a party, and a photo of Tony’s teenage son with a brand-new mohawk reduced everyone to giddiness.
But the next morning when Dean’s youngest sister, Liana, flew in from San Francisco he was unnerved. “You were gonna come in a couple of weeks … ” he began. It was clear that she’d been summoned, and tears spilled from her eyes. I pulled up a chair for her, but she stood and leaned over the bed.
“So Dean, remember when you taught me to swim?”
Dean was already drawing away from her pain. “Not really, no,” he said, tipping his head back on the pillow, closing his eyes.
One of the internists was Dr. Natraj, a tall, slim Indian man with the slicked-back hair of a Bollywood hero. Dean singled him out as a worthy interlocutor.
“How are you feeling?” asked the doctor.
“A little better. Maybe,” said Dean.
“On a scale of one to five, any pain?” The doctor pointed to a whiteboard, on which I’d written my name and phone number in magic marker. On it was taped a poster with five numbered faces, the severed heads of stick-figures. Face number five at the left was creased in agony. Face number three looked Buddha-like and impassive. Face number one had bright pupils over a gapped smile, like Happy the Dwarf, stoned.
“No pain,” said Dean. “But the question is, how do I get to look like number one?”
The doctor gestured to me. “Number one is up to her,” he said without cracking a smile, and left.
About six times a day, after being asked to recite his birthdate—“One-twentytwo-fortynine”—Dean was asked if he felt pain. He invariably said no, and the questioner moved on: “Can you move your toes? …” How then was he to register how it felt to be so far from health, weakened by fever, slowed by stroke, bruised from head to toe? Scared. Ashamed of having to summon a nurse to walk him to the toilet; of having to pee into a plastic jar.
The next time Dr. Natraj came in, Dean said, “So, what’s the plan, when am I going back on chemo? Did you talk to my docs yet at Hackensack?”
Dr. Natraj said, “Chemo would kill you now. It would send your blood levels through the floor, and meanwhile we’re breaking our necks to get your blood levels up. It doesn’t make sense for now.”
“But I have to at least be on Pomalyst,” said Dean, fear foaming in his voice.
“Let’s put it this way,” said Natraj impatiently. “Which is likelier: You’re going to die from cancer tomorrow, or you’re going to die from chemo??”
Dean was silent.
“From chemo is the answer,” said Natraj, heading out the door.
While I silently resolved to report Natraj for rank insensitivity, Dean shook his head in admiration: “I like that guy; he’s the best.”
Dean was not going back to Hackensack; he was not going back to Montclair. I distributed my house keys to his kids, nephew, brother, and sisters, borrowed AeroBeds and sleeping bags, and told everyone to make themselves at home.
* * * * *
I first met Daphne at the hospital. I’d decided in advance to hug her, however nervous I was to meet her, but she hugged me first. Her arms went all the way around me and she held me a long time. When we drew back, her eyes were seas of kindness. Walker said, “Jesus, Mom, you guys are wearing the same thing,” and we were: jeans tucked into high black boots, navy V- neck sweater over a peek of camisole, a floral scarf. Any excuse to laugh, loudly, chaotically, and we took it, including Dean, who seemed slightly awed by the occasion: the meeting of wife and girlfriend, the modern driving of the golden spike.
After 30-some years with Dean, Daphne knew exactly what he wanted to eat and visited every couple of days bearing jars, pots, Tupperware full of hot food. My pea soup moldered in the mini-fridge, so I started bringing in a homemade banana malted or fresh orange juice in the late afternoon. Whatever I brought he drank down in a few minutes, without removing his lips from the straw. When he put down the cup, he’d stroke the tender inside of my arm: “You’re a seriously good girlfriend.”
Terminal illness, when it is not your own (and perhaps when it is), feels interminable. In 1990, while I watched dark fluid drain from my mother’s liver into a 5-liter jar on the floor, I told my husband, “It’s a forced march, this waiting. This watching.” Now, when people asked how I was doing, I said, “It’s a bucking bronco. Just trying to stay on.”
It not him. It not I.
It was a wild, white-knuckled ride. Dean pinballed back and forth to the ICU, the step-down ICU, three medical floors, the ACE unit (Acute Care for Elders, not cardsharps). I stopped texting his family with room numbers; when they came, they’d find him. To my astonishment, he was even released, twice, to a rehab pavilion nearby, and twice came back by ambulance within a few days. On his third day in rehab, I noticed a precipitous decline. He could barely manage physical therapy, couldn’t sit up unassisted, and stopped speaking, except for a grunt or a word here or there. By the time he arrived in the ER, he was unresponsive. The diagnosis: Dean, who had never had diabetes previously, was now in a diabetic coma. All night, Walker, Liana, and I took turns sitting by him, weeping openly; from time to time, a nurse would enter to hang a megadose of intravenous insulin. He seemed very far away, as though he’d left his soul behind in a drawer at the rehab, and no one had thought to bring it. The intensive care doctor, a plump Indian woman who’d been following Dean’s decline, sat with us in the waiting room. It was now “appropriate,” she said, to put in a Do Not Resuscitate order; if we agreed, she would file it right away. When Adina had raised the issue of a DNR with Dean a week earlier, he’d refused to discuss it. “If your heart stops beating,” said Adina, “they’ll do everything they can to get it going again. It can mean great force, Dean, maybe broken ribs. Is that what you want?”
“That’s never happened, Adina.”
“Dean, I know it’s never happened, but it could happen.”
He scowled at her, then at me; he’d have signed a DNR on the spot for each of us. “It’s not going to happen, Adina,” he said, with oracular conviction.
But that was a week ago. Today Dean was not deciding, and after Walker conferred with Rosie, we told the doctor to proceed with the DNR. “Go home and get some sleep,” she said, “he’s stable now.”
We each went in alone to kiss him good night. I brushed his forehead with my lips, and it was cool, as though the fever had somehow burned itself out. Something was winding to an end, and I knew I would never speak with him again. I’d be speaking to him from now on, and then not at all.
At 6:30 a.m. the phone rang. The hospital, I thought. I’d already been summoned twice in the middle of the night—crisis averted, by the time I arrived.
“Sweetie, where am I?” It was Dean, flustered, frightened.
“I don’t know where I am. How did I get here? I was in rehab…?”
I was floored. “You’re in the hospital, since last night, darling, don’t move, I’ll be right over. And,” I assured him, “you’re going to be just fine.” Unthinkingly. Unthinkably.
When I rushed in, he was sitting up in bed, sipping coffee, his eyes bright—not as bright as Happy the Dwarf, perhaps, but alive and luminous. I cried; I kissed him; I called Walker and told him to call Liana. News traveled fast, and soon two dear friends arrived with celebratory cappuccinos: one for me, and one for Dean.
When I explained to Dean that he’d been diagnosed with diabetes, he said, “What the heck? My mom had diabetes, but I don’t have diabetes.”
“Well…now you do. For now,” I added.
“So…what’s the deal?”
“They’re monitoring your blood sugar before meals and giving you insulin when you need it. I’m sure someone will be in to teach you how to do all this on your own.”
But no one did that day, or the next, or the next. On your own was not on the table.
* * * * *
In early April, I learned another new word: “Palliative,” as in “palliative care,” the treatment of pain and symptoms, but not the underlying illness. It was the silent first syllable of hospice.
Hallway conversations, in low tones, diverged from bedside conversations. Was it time for hospice? Yes, it was time for hospice, I ventured, but Dean doesn’t think so, and he’s in charge. But he’s irrational. Yes, but he knows what he wants; he told the doctor his treatment goal is to get back to chemotherapy, and the doctor thought he was competent. We have to bring him around, we have to get him to where he can accept it. Listen, I said,I learned something from watching my mother die at 58: Dean doesn’t have to get cool with dying.
We were at the end of Dean’s life, but he wasn’t.
One morning, after a sleepless night on the sofa in Dean’s room, I pulled aside a young madonna-faced internist whose pregnant belly bulged in her white coat. Adina had taken a liking to Dr. Sandhu; she was sensible and compassionate, giving each of our arms a squeeze before leaving the room. Now I grabbed hold of her arm, tight. “Look, I don’t know where we are anymore,” I said. “He’s just in a world of his own, there’s an equator in the room, our reality, his reality. He’s not making good decisions, but he’s still deciding.”
“Let’s talk to him together. His fever’s in the brain, it’s called central fever, and it won’t go away. He’s not getting better, and he knows it.”
That evening, with Rosie sitting at Dean’s left arm, and me at his right, Dr. Sandhu pulled up a chair. “Dean,” she said quietly, touching his arm, “can we talk for a few minutes? Can you sit up for me, please?”
With a robotic whirrrrrr, he raised the bed, now sitting upright.
“Dean, how are you feeling?” she asked.
“A little better. Maybe,” he said flatly.
“You’ve been here, on and off, since March 17th,” she said. “Dean, are you feeling better or worse than you were then?”
“Not better. A little worse. Maybe.”
“Are you getting stronger or weaker?”
“Are you able to come and go, walk on your own?”
“Are you being treated with chemotherapy?”
“Not right now,” he said stoically.
She sat silently for a moment, letting the facts pool around us. Dean closed his eyes.
“Dean,” she said, a little louder; he seemed about to doze off. “I agree with everything you say. I don’t see you getting better, and that’s why I want to talk to you about palliative care. We can do our best to keep you comfortable and free of pain. If things should change, then we can discuss a change in treatment. But for now,” she said, “I think this is what is best for you. And research shows that the sooner palliative care is started, the better the patients do.”
Dean lay still, eyes closed. Tears were falling down his temples. “Makes sense,” he said calmly.
When he spoke again, without opening his eyes, his voice was choked. “Who can I turn to?”
Even for Dean, whose life was a god-free zone, the question shaped itself this way: not What, but Who?
“To us, Dad!” Rosie said, in tears, “we’re right here! We love you.”
“We’re here, sweetie. Turn to us!” I said. But he didn’t turn, he just lay still, eyes closed. Dr. Sandhu pushed on the arms of her chair, heaving her heavy body up. She reached out a hand and squeezed Rosie’s arm, then mine. “I’m going to leave you three right now, but I’ll be back tomorrow. Bye, Dean.”
Soon Rosie went to meet Daphne in the respite room. I stroked Dean’s forehead with a wet washcloth; the fever was peaking. He opened his eyes, locked mine, and said, “This is getting scary.”
“Sweetie,” I said, “I’m going to promise you this: You’re going to do this in your own way. Just as you always do. Your own way.” He squeezed my hand, tight.
If I kept talking, I’d keep from sobbing. “And your music, and your beautiful kids, they’re part of you, out in the world.” He squeezed again.
“And we’ll all take care of each other.
“And I’m here with you.”
“And—” But before I could think of another “and,” he was asleep. I asked the nurse for a blanket and sheets and slept again on the sofa.
The next morning, I awoke to find Dean sitting up in bed, pen poised over paper. The page was blank.
“Hi, love,” he said. “Good morning, Girlfriend.”
“Good morning, Boyfriend.” I got up and kissed him on the lips, and he tongued me, gently.
“I’ve been thinking,” he said slowly, turning to look out the huge picture window. A curtain of puffy clouds hung from an invisible rod. “She’s fine, Sandhu, but inexperienced. And she’s not my doctor. So, I’m checking in with my docs at Hack” – he lifted his phone from the table; “they’ll know what to do.” He sounded like my father, before Alzheimer’s reduced him to babble: absolutely sure about absolutely everything.
“I already put a call in,” Dean said; “Fixler’s calling back soon. Help me make some notes.”
I have the notes he made that morning, as I slowly spelled out the names of drugs and tests, and he painstakingly wrote them down. As always, he wrote in all caps, but the letters are cracked, open, disjointed. Everything slants down, as though he didn’t have the strength to adjust his hand across the page.
When Fixler called, I sat by, coaching Dean, supplying the names of tests and drugs, correcting him each time he said “positive” for negative. Mostly he listened.
When he hung up, he seemed relieved. “Fixler says palliative care can’t hurt anything.”
Fixler evidently knew his man.
“But he said that he needs me to have a spinal tap to see if there’s cancer in my brain. That’s the only way he’ll know whether they can continue to treat me.”
“A spinal tap?”
“Yes, he said palliative care doesn’t interfere, and it’s fine to have a test.”
Fixler hadn’t seen him since early March—how dare he. “But, Dean … you don’t have to do it! Just say you don’t want it!”
“But I want it! He’s going to call Sandhu and get her to set it up.”
It unfolded like a biblical fate: And Dean said yes and Fixler called Sandhu, and Sandhu set it up.
I called Adina in California; what could I do to prevent the spinal taps?—which might be as many as three, depending on what the first two showed.
“What does it matter?” asked Adina, her voice warm, calm, even.
“What does it matter?” It was obvious: Why put a man this weak through the pain of more needles, more tests?
“If Dean needs to do this,” she said, “then let him do it.” As children, they had brushed their teeth in front of the mirror together, each watching the other’s reflection.
My exhaustion was overwhelming; maybe resignation would drain it away. “I guess Dean needs a project,” I managed, “and now he has one.”
“Right,” she said. “You’re not responsible for doing anything about this. You’re there to be his companion, to be his buddy.” Once, lover; for now, deathbed buddy.
When it was time for the spinal tap, the orderlies said they would move the whole bed, sparing him the painful ritual of a transfer (“on my count … 1 … 2 … ”). Dean’s phone lay beside him in the bed.
“Dean,” I said, picking up the phone, “leave this here on the table.” I had to go teach, but I didn’t want to take it with me; where would Dean be without his phone for the better part of a day? “It’ll be safer here than down there; they’re sure to move you from this bed.”
“No, put it here,” he said tapping the sheets rhythmically. It was the way I signaled him to climb into bed when he lingered too long drying off after a shower.
“Dean … ”
“Put it here. Please.”
A few hours later, he was wheeled back, asleep, minus the phone. The nurse said it must have been tossed in the sheets and sent out to the laundry, “someplace in Pennsylvania”; it might as well have been Transylvania. I dreaded telling Dean it was gone, but when I did, he was indifferent. Walker had the number disconnected, though just then it seemed a bad omen to delete it from my phone, and later on, too sad.
XII. April 7-9, 2013
When Dean and I talked throughout the day, it was about the nurses, the food, test results. I brought in reports from the outside world, which had shrunk to the dimensions of the classes I taught and crocuses glimpsed by the lake. With barely a past, we didn’t reminisce—that was for Dean and Daphne, Rosie and Walker. Instead of a future, we had whatever was next: the next dose of Tylenol, the bag of platelets, the next episode of Arrested Development. When I asked if he wanted to read Tom Robbins, he’d ask, Did we start the next chapter? I usually couldn’t remember either. I thought of my mother, on her deathbed, asking me to read her a review of Fred Crews’ book on Freud, over and over, while she struggled to retain something. Anything.
Dean and I didn’t talk about dying, at least not after the day of Dr. Sandhu’s visit. I was there to see him through the hour, through the day. Through. Unless he was sleeping or fever-flushed he’d kiss me goodbye—or goodnight, when I slept there—wetly, deeply, softly. Like Atlas, he held up my soul with his large, cool, hands, which seemed to harbor all the strength left in his body. He held my hand tight, squeezed my arm, massaged the inside of my elbow. Once he brought my hand over to his lips, kissed it in comic chivalry, then slowly moved his mouth up the inside of my wrist in fluttering, lippy kisses, crossing the back of my hand, up my arm, inside my elbow, coming to rest on my shoulder, where he sucked my flesh for a few minutes, as if drinking me in.
By the end of the next week, his kisses were fainter; his touch, lighter. His speech had slowed and slurred, a parody of his usual, lapidary utterance. With considerable effort, he could say his name and his birthdate. When I rushed in after teaching, he couldn’t remember which doctor had seen him, how many bags of blood had already been hung. When a cub neurologist asked him to copy a pentagon, he picked up the pen, drew two crinkly lines, and put it down. He was sleeping long into the morning and going back to sleep after eating.
My parents had trained me well, if unwittingly, for Dean’s demise. My mother’s death from cancer had prepared me for the atrocity of wasting, the detritus of ruined hope, the tedious dripping of the intravenous life. My father, well into his 12th year of Alzheimer’s, had drilled me on the dulling of an incisive mind, incoherence, the surrender of pride and privacy. I accustomed myself to Dean’s dementia with uncanny ease, as if Dean were already gone and I was tending to an older brother who had survived him. He had some of Dean’s mannerisms and from a certain angle, I could see the line of Dean’s jaw; he cracked his neck from side to side like Dean. But he neither looked like, thought like, nor spoke like Dean. Perhaps it was my daughterly manner that led more than one nurse to refer to Dean as “your dad.” Gaunt and weak, with a tendency to drift off mid-sentence, he had become an old man.
But losing a lover is different from losing a parent. The body I’d held and kissed had become, under the faded blue gown, a wasted landscape. There were features to orient myself: the scar on his hairless chest left behind by a portocath; the scattering of tiny red sparks on his belly; the gray, jagged front tooth. His taut arms were thin, his skin papery; his hard calves were soft. His temples had caved in, his face wrapping a skull. Asleep, a turban of washcloth perched on his head, he looked like a weary magus, returned to his bed from the scene of wonder. A few days later, now that he’d stopped shaving, he was Christ unpinned from the cross, bruised and pierced.
When they pulled back the sheet to bathe him, his penis lay like a cabbage rose. Sometimes he cupped his hand over it while he slept, a souvenir of eros.
Sometimes he spoke in his sleep:
I won’t follow the model.
I want my left turn.
When my dying mother hallucinated, the gruff mother of her childhood loomed large: “Ma, I have the nickel, I have it!” she moaned. “Ma, I lost the stockings!” Was Dean speaking to his father, was that the model he refused to follow, unto death? One afternoon he startled awake, looked at me and said distinctly, “I don’t understand why I don’t understand.”
XIII. April 2014
Rome: Dinnertime at the Academy, candles lit, Chianti poured. There are frescoes to rave about, buses to warn about: “Paolo says the 870 runs so rarely it’s covered with moss, and it’s all true!”says Monica, and laughter washes down the wine. When the teacups are cleared and the candles put out, the fellows go into the garden to smoke. I’m a visitor, not a fellow; I head upstairs to get ready for bed. Before lowering the metal blinds, I listen to the painters’ chatter, the glowing ends of their cigarettes etching the darkness.
My room looks out on pines and cypresses, with a view of the pink stucco cabin where one April night 400 years ago, Galileo first showed off his telescope. The conquerors of Gaul had brought back slaves, but what Galileo brought to Rome was something else again: the cratered moon, the satellites of Jupiter, a blemished sun. It’s what lenses always do—fix a bright eye on what’s dark and moving away, then magnify it, like the name of God.
I dim the lamp, click on the “Dean” folder on my laptop, and here they are, arrayed like commemorative postage stamps: 15 photos I took that April afternoon while Dean slept. I’ve waited a year to look at them. Now, one by one, they rise on the screen: the whorl of his right ear; the radish of his cheek; the dark plum of a bruise. The upside-down U of his shoulder, where the gown had fallen away. The limp, yellow foot. I will myself not to blink, not even to look away, for if I do, I may never be able to look again. And since that evening, I haven’t, though I haven’t erased them either. When I finished, I renamed the folder “last days” and closed it.
Click here to read Part III.