Saturday, March 9, 2013

Stanford Magazine - Seeing at the Speed of Sound - March/April 2013

I AM SITTING in my office during a summer internship. Absorbed by my computer screen, I do not notice when my manager enters the room, much less when he starts talking. Only when a sudden hand taps my shoulder do I jump. He is gazing expectantly at me.

"I'm sorry, I didn't hear you come in," I say.

"Oh, right." His expression changes: to surprise, and then to caution. He proceeds to say something that looks like, "Would you graawl blub blub vhoom mwarr hreet twizzolt, please?" I haven't the faintest idea what he said. I have no excuse, for I was looking straight at him. But despite my attention, something went wrong. He spoke too fast; my eyes lost focus.

"Um, could you repeat that, please?" I ask.

His eyebrows raise, but he nods and says it again. I sit up straighter, attempt to concentrate, but again it reaches my eyes as a garbled mess.

"It's fine," he answers. "I'll send you an email."

Well, at least I understood that part, I think as he walks out.

Lipreading, on which I rely for most social interaction, is an inherently tenuous mode of communication. It's essentially a skill of trying to grasp with one sense the information that was intended for another. When I watch people's lips, I am trying to learn something about sound when the eyes were not meant to hear.

Spoken words occur in my blind spot, a vacancy of my perception. But if I watch a certain way, I can bring them into enough focus to guess what they are. The brain, crafty as it is, fills in the missing information from my store of knowledge.

Want an example?

---- the ---- before --------- when ------------- the house

not --- cre --------------------- even ---- m------

Do you recognize the opening of "The Night Before Christmas"? Perhaps so, because in American culture the poem is familiar enough for one to fill in the blanks through memory. Filling in the blanks is the essence of lipreading, but the ability to decipher often depends on factors outside of my control.

IT IS MY FIRST WEEK as a freshman at Stanford, and I feel lost. Instead of coasting through routine interactions with people familiar to me, I have thrown myself into a place where almost nothing is predictable. I sit down at a table of strangers. One of them, I realize, is the guy from the room next to mine. "What's your name?" I ask him.

He answers, but I frown.

"Could you say that again?" I say.

He does, but I still do not understand. The name starts with a B, and ends with a Y, but it is not a name I have seen before. Bobby, Barry, Buddy—none of them match what I saw on his face.

My neighbor, sensing my struggle, mumbles, "Just call me Ben."

Later that day I find out his name is Benamy.

Photo: Greg Sorber/Albuquerque Journal
ABOUT THE AUTHOR: Profound bilateral hearing loss notwithstanding, Kolb earned her bachelor's in English with a minor in human biology and is working on a master's degree in English. She is managing editor of the literary magazine Leland Quarterly, active with Christian ministries and as a disability advocate, and president of the Stanford Equestrian Team. In November, she was named a 2013 Rhodes Scholar.

EVEN THE MOST skilled lipreaders in English, I have read, can discern an average of 30 percent of what is being said. I believe this figure to be true. There are people with whom I catch almost every word—people I know well, or who take care to speak at a reasonable rate, or whose faces are just easier on the eyes (for lack of a better phrase). But there are also people whom I cannot understand at all. On average, 30 percent is a reasonable number.

But 30 percent is also rather unreasonable. How does one have a meaningful conversation at 30 percent? It is like functioning at 30 percent of normal oxygen, or eating 30 percent of recommended calories—possible to subsist, but difficult to feel at your best and all but impossible to excel. Often I stick with contained discussion topics because they maximize the number of words I will understand. They make the conversation feel safe. "How are you?" "How's school?" "Did you have a nice night?" Because I can anticipate that the other person will say "Fine, how are you?" or "Good," I am at lower risk for communication failure.

My companions could be discussing any topic in the universe: the particulate nature of matter, the child who keeps wetting the bed, the villa in Nice that they visited last summer. And, because the human mind is naturally erratic in conversation, ever distractible, ever spontaneous, this is just what will end up happening. How am I to predict the unpredictable? The infinity of the universe, and of man's mind, strikes me as immensely beautiful—but also very frightening.

I don't like superficial remarks and predictable rejoinders, but staying in shallow waters is better than sinking. So long as I preserve my footing, I keep up the appearance of being able to converse—to other people and, more important, to myself.

"YOU KNOW, you could be a spy," David, who lives in my dorm, tells me as we are sitting at brunch.

"Why do you say that?" I ask.

"Because"—he leans in excitedly—"because you could look through binoculars and lipread and understand everything people are saying!"

"Oh." I smile and cross my arms.

"Could you understand those people over there?" David points to a couple at another table. "Maybe," I say, without trying. I dare not explain that they're too far away.

THE TERM "LIPREADING" implies that the skill is, in a sense, exactly like reading—in which the words on the page are clear and perfectly legible. "Can you read my lips?" strangers ask when they meet me. (Never mind that the question is inherently illogical: If I couldn't lipread, how on earth could I answer?) As they ask it, I can see the other, unspoken questions reeling in their heads—What if she can't? What will I do then? Mime?

When I answer that, yes, I can lipread, they relax. Then they prattle on as if all preconditions are off. Because I can "read" their lips, I must therefore be able to "read" everything they say. After all, it would be absurd for me to protest that I can sometimes read the words in a book, but sometimes not. Either you can read, or you can't. (Likewise, either you can hear perfectly—meaning hear and understand everything—or you can't hear at all. Forget hearing aids and microphones and other assistive devices.)

"How did you learn to lipread?" is another common query. I do not have a satisfactory answer. The truth is, I can't explain it. No more than I could explain how I learned to walk, or than anyone else could explain how she learned to hear and understand language. "Practice," I usually answer. Since I entered a mainstreamed public school in first grade, there have been no other deaf people occupying center stage in my life. My world is primarily a hearing one, and I learned to deal with this reality at a very young age. There was no reason to sign with anyone besides close friends and family, no reason to expect anyone to communicate on my terms. Surrounded by hearing people all the time, my only option has been to adapt, and lipreading is the skill that I have practiced most.

But this answer is too simple. The foundation for my success with communication was laid in my earliest years, at a deaf preschool. That was perhaps the only time in my life when I experienced full communication access each day. Everyone—students, teachers, speech therapists, parents, siblings—signed. From ages 2 to 5, I lived, breathed and conversed with people like me—at least, as alike as a young child understands. There was no reason for me to doubt myself or my abilities, so I grew fluent and confident with language. I learned its nuances, its facial and emotional expressions. I learned that it was not inaccessible, as it would sometimes later seem.

More ...

Nora Ephron’s Final Act -

At 10 p.m. on a Friday night in a private room on the 14th Floor of NewYork-Presbyterian Hospital on 68th and York Avenue, my mother was lying in her bed hallucinating, in that dream space people go on their way to being gone.

She spoke of seeing trees, possibly a forest. And she mentioned to Nick, my stepfather, that she had been to the theater where her play was showing and that the audience was full. In reality, she had not left the hospital in a month, and the play, "Lucky Guy," was nearly a year away from opening.

My brother, Max, and I stood there in disbelief. Though it had been weeks since her blood count showed any sign of improvement, the gravity of the situation had crept up on us. Mom's housekeeper, Linda Diaz, who had worked for her for 25 years, was in the corner sobbing.

At some point, a team of doctors and nurses arrived to assess the situation, and Mom became slightly more lucid.

"Can you tell me your name?" one of them asked.

"Nora Ephron," she said, nodding.

"Can you tell me where you are?"

"New York Hospital."

"Who is the president of the United States?"

At this point, my mother looked annoyed, gave a roll of the eyes and refused to answer the question, which later on was the source of some debate between Max and me about whether her sarcasm and humor remained even as her memory and focus faded or whether she was simply irritated at being treated like an infant.

A few hours later, after falling asleep for a short time, she woke up, ate ice cream with Max and me and was able to talk with some coherence about Jerry Sandusky's conviction earlier that day.

When Max said, "Mom, I'm going to miss you so much," she said: "Miss me? Well, I'm not dead yet."

For most of the next three days, before she entered a coma and died, she was sort of herself, asking for the papers and doing the crossword. On Sunday, one of the nurses arrived to give her medication and innocently asked if she was planning on writing about what was happening to her. My mother simply said, "No."

I took this more or less at face value until after her death, as plans moved forward with her play "Lucky Guy," and it occurred to me that part of what she was trying to do by writing about someone else's death was to understand her own.

Illness, and how a person handles it, was not the first thing on my mom's mind when she began writing "Lucky Guy" back in 1999. At that point, she wasn't even sick.

Based on real events, "Lucky Guy" is about a tabloid journalist named Mike McAlary. In the early '90s, he became one of the highest-paid newspaper columnists in the country. Crime was still rampant in New York, and the Internet had not yet destroyed the economics of the newspaper business. My mother said that she saw his career as "the end of something," a bookend to a time when reporters could still believe there was power in the job; when Elaine's was still one of the city's most glamorous rooms; when much of Times Square still belonged to prostitutes and drug dealers; and when the West Village had not yet been taken over by hedge-fund magnates and Russian oligarchs.

My mother knew a lot about McAlary's world. She dreamed of being a newspaper reporter from the time she was in high school, and wound up spending much of her 20s working at The New York Post. Moreover, McAlary was what she liked to call "a problematic human being." And after a decade of writing and directing romantic comedies, a lead character who wasn't entirely likable seemed like a good way to keep herself from getting boxed in.

The project, however, kept getting sidelined. There was a movie, "Bewitched." And a play Off Broadway, "Love, Loss, and What I Wore," which she wrote with her sister Delia. Then another movie, as well as two anthologies of her essays. Another problem she kept running into: She'd conceived "Lucky Guy" (then called "Stories About McAlary") as a film for HBO, but the structure was unconventional, relying largely on the other characters to tell their versions of what happened to him, essentially breaking the fourth wall. And everyone, including her, was unsure of how it was going to work on-screen.

Then in 2008, Colin Callender, the man guiding the development of "Lucky Guy" at HBO, left the network. Callender had taken a personal interest in the project because he'd known McAlary. Shortly after striking out on his own as an independent producer, he called my mother with a new idea: What if her script was not a movie but a play, where characters regularly talk to the audience?

Two weeks later, she handed him a new draft. By this time, there was something else pulling her toward McAlary as well.

McAlary got the scoop of his life just nine months after receiving a diagnosis of advanced colon cancer. In 1997, he wrote the story of a Haitian immigrant named Abner Louima who was brutally assaulted by a New York City police officer. In the spring of 1998, McAlary won the Pulitzer Prize for his work. On Christmas of that same year, he died at 41. Shortly before his death, he was quoted as saying: "If you are a doctor or a lawyer, you take the case. If you're a reporter, you write the story. I didn't think about being sick."

When Mom returned to working on the script in 2008, this was something she knew all about, though it was a secret confined to a tiny group of people: my stepfather, my brother, her sisters, a couple of close friends and me.

In late 2005, my mother went to see her doctor because she had been feeling, as she later told me, "punky." She had always been a little anemic, but now, she appeared to be getting worse, with fevers and inexplicable infections. After years of seeing a trainer two to three times a week and being pretty fit for a woman in her mid-60s, she found herself dreading having to climb stairs.

She eventually made her way to J. Gregory Mears, a hematologist at Columbia University, who quickly gave her a diagnosis of myelodysplastic syndrome, an aggressive blood disorder that destroys the body's ability to make healthy blood cells and ward off infections. The only known cure for it is a stem-cell transplant, but stem-cell transplants are especially difficult in older patients. Among other potential complications, the body may reject the donor cells or develop graft-versus-host disease, in which the transplanted cells can attack the patient.

This is what happened to Susan Sontag, who also died of acute myeloid leukemia brought on by MDS, and had many of the same doctors as my mother. Discussing the aftermath of her unsuccessful transplant in an article for this magazine in 2005, Sontag's son, David Rieff, wrote, "To me 'torture' is not too strong or hyperbolic a word."

My mother had seen her closest friend, Judy Corman, go through a series of increasingly painful treatments that didn't do much but extend her suffering from the cancer that eventually killed her. Between watching this and reading about what happened to Sontag, Mom became unambiguous in her opposition to testing fate, to gambling away comfort for the remote possibility of being cured. She was determined to have a "good death."

I'm not sure what would have happened had a stem-cell transplant been a viable option ­ — if her sisters had been a match, for instance — but thankfully, it didn't come to that. Soon after my mother went to see Mears, Jerome Groopman, a doctor at Harvard with extensive experience in treating cancer, was called in for a second opinion. After running a series of tests, he concluded that she quite likely had an unusual variant of MDS, which could be treated with less drastic measures.

Over time, the worry I felt when she first told me about the disease began to fade. We knew the statistics, but statistics — as Alice McAlary recounted to Mom about her husband, Mike — get you only so far. Besides, my mother had never been ordinary.

A moderate dose of prednisone helped stabilize her blood count for a couple of years. When the prednisone stopped working, she went to see Stephen Nimer at Memorial Sloan-Kettering. He put her on Vidaza, a low-dose form of chemotherapy with few side effects. Along with monthly blood transfusions, it effectively controlled the disease for two years.

Then while on a trip in the South of France in 2010, she went swimming and felt something stab her arm. She believed she had been stung by a jellyfish but was not sure. A few weeks later, she wound up in a hospital in Los Angeles with an inexplicable bacterial infection that led to a bump on her arm the size of a tangerine. Miraculously, when she got out, she was transfusion-independent. Her doctors had no idea what had happened, except to speculate that her bone marrow responded to a threat in an unusually dramatic way and was now producing healthy blood cells and platelets. My mother was not one to go in for superstition or miracles — godlessness was for her a form of religion, a belief in self-sufficiency above all else — but she was near certain her recovery had something to do with the jellyfish.

At various points over the years, she considered coming clean to her friends and colleagues about her illness. But she knew the effect it could have on her career. Certainly, she could continue writing books and essays. But getting a movie made would be impossible, because no insurance company would sign off on it. Arguably, she could do a play, but bringing it to Broadway would be difficult, given that the development process takes years. Beyond that, what my mother didn't want was to have her illness define her, turning every conversation into a series of "how are you?"s.

All her life, she subscribed to the belief that "everything is copy," a phrase her mother, Phoebe, used to say. In fact, when Phoebe was on her deathbed, she told my mother, "Take notes." She did. What both of them believed was that writing has the power to turn the bad things that happen to you into art (although "art" was a word she hated). "When you slip on a banana peel, people laugh at you; but when you tell people you slipped on a banana peel, it's your laugh," she wrote in her anthology "I Feel Bad About My Neck." "So you become the hero rather than the victim of the joke."

And she applied that maxim everywhere. She wrote a magazine article about The New York Post and her former boss there, Dorothy Schiff ("It is a terrible newspaper. The reason it is, of course, is Dorothy Schiff"); her breasts ("If I had them I would have been a completely different person"); even getting fat injections in her lips ("I looked like a Ubangi, so I never did it again"). There was also an entire book and movie devoted to her divorce from my father. (But never mind that.)

The thing is, you can't really turn a fatal illness into a joke. It is almost the only disclosure that turns you into the victim rather than the hero of your story. For her, tragedy was a pit of clichés. So she stayed quiet, though clues were sprinkled through much of what she wrote during the six years she was sick.

They were there in "I Feel Bad About My Neck": "Death is a sniper. It strikes people you love, people you like, people you know, it's everywhere. You could be next. But then you turn out not to be. But then again you could be."

They were there in "I Remember Nothing": "The realization that I may have only a few good years remaining has hit me with real force, and I have done a lot of thinking as a result. I would like to have come up with something profound, but I haven't. I try to figure out what I really want to do every day, I try to say to myself, If this is one of the last days of my life, am I doing exactly what I want to be doing? I am low. My idea of a perfect day is a frozen custard from Shake Shack and a walk in the park. (Followed by a Lactaid)."

And they were there in her last edits of "Lucky Guy," the final piece of work she completed.

My mother didn't know Mike McAlary personally, but she was certainly familiar with his kind. And what details she didn't know were quickly filled in by his friends, colleagues and relatives, almost all of whom she interviewed.

McAlary was born in Oahu, Hawaii, and he grew up in Goffstown, N.H. After graduating from Syracuse University, he went to work at The Boston Herald American, covering sports, then eventually scored a job at New York Newsday. There, he made a name for himself as a particularly aggressive reporter, covering crime and police corruption. After that he began to bounce back and forth between The New York Daily News and The New York Post, getting bigger and better contracts each time he made a move.

In 1993, he broke his contract with The Daily News to become the highest paid reporter at The Post, with a salary of $945,750 over three years. The Daily News was granted a preliminary injunction that prevented him from making the move, and McAlary wound up with too much time on his hands. After a night out at a Yankees game, he totaled his car on the F.D.R. Drive. His injuries were so serious that he spent several days in a coma and a month in the hospital. Rupert Murdoch, who hired him at The Post, never called or came to see him. But Mort Zuckerman, who owned The News, did. So he stayed at The News.

Not long after McAlary returned to work, he made a career-killing mistake. A woman in Prospect Park had reported being raped, but Mc­Alary's sources had doubts. He was told that the results of the rape kit had come back negative for sperm, that it was only a matter of time before she was found out. But the most crucial points in McAlary's stories turned out to be wrong. The woman had been raped. What the source didn't realize was that no sperm didn't necessarily mean no semen. McAlary had made no attempt to speak with the victim herself, an act of laziness that his supporters believed was partially attributable to his accident.

The News reduced the frequency of his column. The official explanation was that he was writing his novel. It was around this time that he began to get sick. He was jaundiced and losing weight. In conversations, he seemed dazed.

"He still had these symptoms," said his widow, Alice, when I went to see her last month. "You have to remember, they put him all back together again. So when he started having issues with his colon, his stomach, all that stuff, we attributed them to the accident."

By the time McAlary got his diagnosis of colon cancer, it had already progressed to an advanced stage.

"It was a desperate situation," said Ed Hayes, one of McAlary's closest friends and the man who negotiated all of his contracts. "The nurse took one look and said: 'Forget this guy. He's a dead man. There's no hope for him.' "

Nevertheless, he underwent surgery to remove as much of the cancer as possible, then started chemotherapy in 1997. He was hooked up to the chemo drip when he received a tip that a man had been severely assaulted by a police officer. He drove from his treatment to see Abner Louima in the hospital. He was the first reporter to interview the victim. In horrifying detail, Louima told him how he'd been wrongfully arrested outside a nightclub and taken back to a police station, where one of the cops raped him with a plunger.

In a series of articles, he not only exposed a monstrous incident of police brutality but started the earliest debate about the Giuliani-era approach to law enforcement. In short order, McAlary's career was rehabilitated.

In the play my mother wrote, there's a scene toward the end, in which McAlary, sick with cancer, goes to the Poconos to visit his friend Jim Dwyer, then a columnist at The Daily News. It's a glorious summer day, and McAlary's 12-year-old son, Ryan, wants to do a flip off the diving board, but he gets scared and can't do it. So McAlary takes off his shirt, walks to the edge of the diving board and says to him: "When you do these things, you can't be nervous. If you think about what can go wrong, if you think about the belly flop, that's what'll happen."

And then McAlary does the flip himself and makes a perfect landing.

It's a metaphor, obviously, for his view about life. And I've come to think it might as well have been about my mother. The point is that you don't let fear invade your psyche. Because then you might as well be dead.

As she saw him, McAlary was a role model not so much in life, but in death, in the way that he used writing to maintain his sense of purpose and find release from his illness. In the six years my mother had MDS, she wrote 100 blog posts, two books and two plays and directed a movie. There was nothing she could do about her death but to keep going in the face of it. Work was its own kind of medicine, even if it could not save her when her MDS came roaring back.

"I'm having a little health crisis."

That's how she put it when she called me shortly before Memorial Day weekend.

I dropped everything, got into a cab and headed up to see her at NewYork-Presbyterian Hospital. While I was en route, the phone rang; it was Max, who told me that Mom's MDS had turned into leukemia. I think I already knew, even though I hadn't asked her for specifics. For six months, Mom's blasts — the bad guys that make it difficult for people with MDS and leukemia to produce healthy platelets and white blood cells — had been creeping back up, indicating that she was developing a resistance to her medication. Now she would need a brutal form of chemotherapy if she hoped to survive. Max and his girlfriend, Rachel, were getting on a plane from L.A.

When I arrived in her room, my mother was crying. She cried a lot that first night, and then, the next day, she cried some more because she was certain Christopher Hitchens had done no such thing, and she was devastated at the thought that she might not be as brave as him about death.

It terrified me to see her cry like that. She loved me, showered me with gifts, e-mailed or called every time I wrote something that made her proud. But even after all the weekly meals, the shared vacations, the conversations about movies and journalism and the debt ceiling and Edith Wharton, I still viewed her with a mix of awe and intimidation. It wasn't often that I caught a glimpse of her vulnerability.

Now there she was, in her Chanel flats and her cream-colored pants and her black-and-white-striped blouse, looking so pretty and so fragile as she dabbed her eyes with a Kleenex; and I finally understood what she meant when she said she was a bird — that she wasn't just talking about her looks but something inside as well.

As she explained it that first night, the odds of the chemo working were below 50 percent, and even if it did, it would probably not buy her more than a year and a half or so. "I want to live to be 100," she said. "I want to see how things turn out for you and Max." But she wasn't sure the chemo was worth doing for such a limited upside.

I told her that I hoped she would reconsider, that a year and a half is a lot of time during which something else may emerge as a viable treatment. Still, I said I would respect whatever she wished to do, that it was her body, her life, her choice. I think this is what she needed to hear, that we wanted her to live more than anything but that she was still in control. Because within minutes, she seemed resigned to the idea that she was going to be nuked, as she put it.

Forty-eight hours later, she was hooked up to an IV. Her sadness seemed to lift, and her humor returned. The side effects of the chemo wouldn't kick in for at least a week, so she spent her days with Delia powering through a TV pilot they were writing for Scott Rudin. At night, Nick brought in Shake Shack or Cuban-Chinese, and we watched episodes of "Curb Your Enthusiasm." Binky Urban (Mom's book agent and one of her closest friends) and Ken Auletta (a writer for The New Yorker) were there frequently as well. So was Richard Cohen, the Washington Post columnist and one of her oldest friends. Because of my mother's tremendous sense of will and a modest dose of steroids, the script was finished before the chemo was.

At first, there were some encouraging signs. She wasn't in remission, but the blasts were below 20 percent, which is considered the threshold for being fully leukemic. Then, about a week and a half later, she got pneumonia. As her doctors explained it, the body often takes three weeks or so to begin producing neutrophils after chemotherapy of this type. And neutrophils are the good guys that defend the body from infections. One day, she would seem to be getting better; the next, worse. At night she was experiencing heart palpitations. It was confusing to all of us, including my mother.

So we waited.

We waited as she went on and off oxygen. We waited as her appetite left her. We waited as she lost her hair, and this I remember vividly, because I did not see her cry at all. Crying, I believe, is a sign that there's still hope. Instead, she seemed sort of numb.

My mother loved looking good. She had her hair blown out weekly. She wore makeup. She had a closet filled with Prada and Armani. When she realized that she might be too old to wear a very expensive dress by Azzedine Alaïa that she bought in Paris, it was like a little arrow to the heart.

She had fallen in love with and married a man who was as fastidious about presentation as she was. Even in the hospital, day after day, Nick arrived looking impeccable in his fancy slacks and his beautiful loafers, because getting dressed up was a way to say to her that things were still normal, that he hadn't lost hope. All sorts of men had rejected her when she was younger as cute but not beautiful. She wrote about it, turned it into a comic riff — everything is copy — but privately, it was heartbreaking for her until this noble man came along and made her feel that she was as fabulous to look at as she was to talk to.

And now, here she was without her hair, confined to a bed, using a nurse to help her go to the bathroom. It was the beginning of her losing her dignity. It was the beginning of a bad death.

In the days that followed, conversation became harder, and the silences grew longer. People who live thousands of miles from their parents often express regret at not being able to say goodbye, or about having spent too little time with them during their final days. But being there every day, as I was, produced its own kind of sorrow. It wasn't just the big things we were avoiding saying (although there were certainly some of those). It was the sadness of having run out of news to deliver, gossip to report, new books and movies to discuss. I actually believe that had Tom Cruise and Katie Holmes announced their separation a week earlier, we might have kept her smiling one more night.

On June 18, four weeks after my mother went into the hospital, the Public Theater held its annual benefit to raise money for Shakespeare in the Park. For more than a decade, my mother attended the gala every year, considering it the unofficial beginning of summer. Often it would start to rain in the middle of the show, and everyone would pull out their umbrellas and wait for it to pass. But it didn't matter. It was an evening when her favorite park in her favorite city turned into an enchanted forest.

The night before the benefit, my mother was able to get out of her hospital bed, but she couldn't really speak. She wrote down the names of all the people she had invited to sit at her table that year and organized the seating arrangement for me. When I got to Central Park the next evening, it was a mess: two of her guests had canceled; others knew she was in the hospital but not why; some appeared not to have been told anything at all and looked puzzled when I informed them that she and Nick weren't going to make it.

I was too discombobulated to ask a waiter to please remove the two empty chairs from the table. I just sat there helplessly, hands clasped underneath the table, trying to avoid the concerned looks of nearly a dozen people who suddenly knew that something was rotten in the state of Denmark but were too polite to say it.

After I got home, this admittedly trivial detail gnawed at me. How useless I was, how incompetent. I spent nearly 34 years at the foot of one of New York's best hostesses and I could not even figure out how to ask a waiter to take away two chairs. I had failed to pay adequate attention all those years, and could not even be trusted to do this one small thing for my mother as she neared the end.

Did she know she was dying that final week, that she was not ever going to leave the hospital?

Richard Cohen, who spent much of the final weeks in the hospital with us, says: "She knew. There wasn't a moment of confusion. I'm certain of that."

I go back and forth.

Absolutely, she planned for it. She redid her will earlier in the spring when her blood counts were going the wrong way, typed an exit letter on her computer, spelling out what she wanted after she died: a party in the apartment with Champagne and cucumber sandwiches from William Poll; a memorial held days after. "Get it over with" was the gist of her instructions. She even supplied the speaker list.

Nevertheless, as she ran out of time, she chose not to acknowledge, at least explicitly, what was happening to her. One of the last e-mails she sent went out five days before she died. It was addressed to her film agent, Bryan Lourd. "I am as sad as you can imagine to report that I have leukemia. Early reports are not particularly hopeful but not hopeless either."

The weekend before she went into a coma, Jerry Groopman called her from Boston. If she wanted to know, he was prepared to tell her that she had entered the terminal phase of her illness. She chose not to call him back.

And then there was that conversation with Max, the one in which she said, "I'm not dead yet."

In "I Feel Bad About My Neck," my mother wrote of turning 60: "Denial has been a way of life for me for many years. I actually believe in denial. It seemed to me that the only way to deal with a birthday of this sort was to do everything possible to push it from my mind."

Some part of me would like to believe this is what she was doing at the end as well, because it would indicate that her hope remained as she left the world. But it's just as likely that she felt too sad to have this conversation with me. Or that I was too sad to have it with her.

Sunday, June 24, was a pretty good day. The sun was shining, and Mom spent most of the afternoon on a couch in the front of her room, doing the crossword puzzle with Max. Binky was there, as was Richard Cohen and his companion, Mona. Amy stopped by with her husband, Alan. "We're going to the Guggenheim," Amy said. "Do you want anything from the outside world?"

"Sure," my mother said. "A de Kooning."

Another thing she requested was a pineapple milkshake, so Max brought one from Emack and Bolio's, made from fresh pineapple. But as far as my mother was concerned, a milkshake is one thing that's actually better with crushed pineapple. Dole.

"When I get out of the hospital, I'm going to go home and I'm going to make a pineapple milkshake with crushed pineapple, pineapple juice and vanilla ice cream, and I'm going to drink it and I'm going to die," she said, savoring the last word. "It's going to be great."

On this day, I told her some things. After she moved to her bed, I said that sometimes, I thought of the possibility of her not being around and wondered if I'd ever be able to write again. If I'd even want to. And she told me that I would, that I would find it within me, and that whatever happened, she hoped my brother and I would lead the kind of lives where we did stuff big enough to occasionally say, "Wow, I wish Mom was around for this."

We stared out at the 59th Street Bridge and tried to remember all the others that connect Manhattan to the rest of the world. The Brooklyn Bridge. The Williamsburg Bridge, the Queensboro Bridge, the Triboro Bridge. We got about halfway before she began to doze off.

On Monday, Nick called to say she'd had another tough night. I got to the hospital, and there was more blood work, none of it good. The blasts were everywhere. She didn't have a single neutrophil.

Hours later, she began to drift in and out of consciousness. We took turns holding her hand. Delia would come, then Max, then me, then Amy, then Binky, then Richard. Nick sat beside her and wept.

"In, out, in, out," she said, waving her hands at the windows. Also: "This is it," which she said in a tone that seemed to be half-question, half-declaration. It occurred to me later that it might have been the first uncertain moment she'd had in her entire life.

I started calling her friends to explain what was going on, that she was shutting down, that we were sorry for not having told them sooner. They were startled and confused, but gracious.

I told several of them that they would be speaking at her memorial, that she actually requested it in writing and that she'd also requested that they try to keep it to under five minutes.

Over and over again, they said to me, "This must be so hard for you." But making those calls wasn't. It was strangely beautiful. The people I called told me stories about great advice she'd given them; e-mails she'd sent that they'd loved; and occasionally, what a total pain she could be. Those were funny to hear. They were real.

While I did phone duty, Max relaxed and took off his button-down shirt. Two sleeves of tattoos ran down his arms. Mom had seen one of them years before and had not reacted favorably, so when he went in to get the other arm done, he decided that she would never see it. Never again did he wear a short-sleeve shirt in her presence.

"Wow, Max, look at those tattoos," Binky said.

"Shh!" he said, flashing her a smile.

My mother's eyes popped open.

"Mom, I'm so sorry about my tattoos."

"You. Aren't. Really," she said, her eyebrows raised in a kind of resigned indignation. And then she fell back asleep.

Jacob Bernstein is a frequent contributor to The New York Times, where he writes regularly for the Styles section.