Was that what made him more human? I wondered. My impression of hospital residents was that they were a young, rather impersonal bunch. Their lives were all about rotations, grand rounds, subspecialties. There was never room for the personal—they knew they’d be moving on to their next patient, their next ward, their next mandate on the road to becoming a full-fledged physician.
Dr. Nutti was different; to him, Mom’s illness was intensely personal.
Edith would be back “at 80 percent,” he told me one night when he saw me looking especially forlorn.
Well, I thought, 80 percent of Edith was still more than 100 percent of most people I knew on this earth.
I lingered that night by her bedside, as I liked to do. There didn’t seem to be any purpose in going home. The house felt terrifyingly empty. The rooms were in various states of disarray. By the end my mother—so tidy and meticulous by nature—had been too tired and overwhelmed and melancholy to maintain even a modicum of order.
One Sunday, I took a break from the hospital visits and went to see Laurie, my old friend from Columbia. We princesses of West 116th Street were in touch again, and she’d invited me to her grand new house on Long Island, in the leafy Five Towns where she’d grown up.
She greeted me, as sunny and ebullient as ever, at the door of the imposing home that she and her husband had recently bought. All around her, small children were playing, hers as well as her sister Trudy’s. The two were neighbors, and their parents were still nearby in the old house, so that the original family had been miraculously preserved, even as Laurie and her siblings grew up, got married, and raised families of their own. We drove to nearby Lido Beach and spent the day together laughing and reminiscing as her three children—miniature blond versions of Laurie—played nearby. We’d be interrupted by Lani, Laurie’s demanding four-year-old who seemed to drive my friend to distraction. Laurie would alternately chide her, fuss over her, put an outsized bow in her hair, hand her a beach toy, and we’d resume our conversation only to have Lani return to us, clamoring for more attention.
Years earlier, during another nadir in my life, Laurie had managed to be extraordinarily affirming. That was partially why I’d decided to make the trip, to take a break from Mom and the hospital and the doctors. I prayed that my friend would once again work her miracles on me.
And yet when I came home that night, I felt sadder then ever. My old room felt suddenly so small, as if I had grown but it had failed to grow with me. I understood what my mom had faced on Sixty-Fifth Street, why she was always running.
What, I wondered, did my family have to show for all our years in this country?
After a couple of months, Edith was finally ready to leave Maimonides. She needed rehabilitation, we were told, but where?
No one wanted her. It was my first glimpse of how our medical system really worked in the 1980s, how it tended to see patients not simply as ailing or well, but as desirable or undesirable. Contrary to their do-gooder image, hospitals had become intensely mercenary, focused primarily on their bottom line. By 1987, rehabilitation was considered almost a luxury; it was being rationed, allotted only to the lucky few who could show rapid, definitive improvements. If a facility felt it could get abundant reimbursements, they welcomed a person with open arms. But Edith, a Medicaid patient with a deeply uncertain prognosis, was perceived as risky and even worse, unprofitable.
I appealed to one major facility after another to take Mom. One after the other turned us down: They didn’t think she would improve and weren’t willing to take a chance. One day, I traveled to the Rusk Institute—the Holy Grail of rehab facilities—to make a personal plea to one of the top administrators. I all but begged him to take Mom, all to no avail.
At last, I was able to get her to a brand-new department that had opened at Mount Sinai Hospital on the Upper East Side. Its director seemed friendly and amenable to taking Mom in. Sinai’s unit wasn’t too selective yet—the priority was filling beds. Within a couple of days, Edith was transferred to a cheery, sun-drenched ward that required patients to wear “real” clothes as opposed to hospital gowns. I was told to purchase some loose-fitting trousers and blouses for her so that her exercise program and recovery could begin.
Life seemed stunningly hopeful again. I went on a shopping spree at Berta Bargain Store on Eighteenth Avenue and bought dozens of stretch pants and T-shirts and a pair of white lace-up sneakers and remembered how happy Mom and I had been once upon a time foraging through Berta’s bins for sale items.
Maybe Edith really will be back at 80 percent, I thought, as I picked out a colorful cotton blouse for her.
Within days the Sinai doctors were demanding to meet with me. The news was grim: They didn’t see any point in continuing the rehabilitation. They used the dreaded “A” word. Mom had a form of Alzheimer’s, they declared, and wouldn’t benefit from the regimen of therapies the unit could offer.
“But you have barely started,” I argued. I was still reeling from the stroke and its aftermath; now I had to contend with one of the most hopeless diagnoses a person can receive. And yet when I’d visited her that morning, Mom had looked a bit like her old self in her canary yellow pants and jaunty white lace-up sneakers. She seemed thoroughly enchanted with her sneakers. She had never before owned a pair.
The doctors kept shaking their heads. Edith couldn’t grasp even basic commands, they said. She would only get worse. The only route for her would be a nursing home. She could join her husband, a social worker chimed in helpfully, as if she were suggesting a romantic reunion in some exotic locale and not life for two in a bleak institution in Brooklyn.
They wanted to immediately start the paperwork to have her transferred.
I flew to Washington to liquidate my apartment, and also to clear my head. I hadn’t had a chance to go back since Mom’s stroke. I couldn’t stop crying the entire plane ride. An amiable gentleman seated next to me turned out to be a physician in New York. I told him of what had happened with my mom, and he urged me to go see a friend of his, a neurologist named Sidney Diamond, who worked at Sinai.
Before I could do that, I needed to deal with my apartment. I’d put an ad in the Washington Post advertising a moving sale. A man arrived early in the morning and offered me a hundred dollars for all I had acquired in my years there—my sofa, my bed, my dining room table, my chairs, my posters, my clothes. I was glad to be rid of them; none held any meaning for me anymore, and I wanted no reminders. I took the money, let him remove every single one of my belongings, and flew back to New York.
Once back at Sinai, I found Dr. Diamond in a small basement office of Sinai. The elderly neurologist with a bow tie and a courtly manner listened intently as I described my struggles with the rehabilitation unit. A curmudgeon by nature, Dr. Diamond relished a war with the hospital bureaucrats who had sidelined him years earlier.
“Make them do it,” he replied. “Make them rehabilitate Edith.”
Dr. Diamond wasn’t sure if Mom was capable of improving, but he passionately believed she deserved a shot. Any kind of therapy—physical, speech—could only help her, he said again and again. The exercises would improve her state of mind—she was surely depressed from the effects of the stroke—and help her walk and move her arms and legs, atrophied from weeks of lying in bed. Besides, simply interacting with therapists and aides would alleviate the terrible isolation he suspected she was feeling.
Egged on by Dr. Diamond, my battle with Sinai began in earnest. One by one, I’d corner doctors and physical therapists and plead with them to keep working with my mother. They explained again and again that her memory was gone, that she had no comprehension of what was going on around her—why, she didn’t even know where she was, they argued. For every additional day she was allowed to remain in the rehab unit, they acted as if they were doing me a favor, as if this were all for my benefit.
And yet remarkably and counter to their predictions, Mom was beginning to make progress. I would arrive in the morning and f
ind her walking—unsteadily—with a physical therapist. She occasionally even smiled, a slight, crooked half-smile. Her speech was beginning to come back—she spoke almost in complete sentences, though they were garbled and tentative.
She wanted to go home, she told me one morning. She wanted to return to the house on Sixty-Fifth Street.
She mouthed the word home with difficulty.
This is how Sinai’s doctors fought their war with me: by attacking any illusions I had left, by launching search and destroy missions to eradicate any and all hope that Mom would make a comeback.
Every day, they would approach her with a faux friendliness that, in her innocence, she mistook for caring. “Edith, how are we this morning?,” they’d say, in voices that radiated cheer and bonhomie. She would look at them with her big porcelain doll’s eyes, at first somewhat bewildered, unsure of what these men in white coats wanted, but then she would smile, trying even now, in the depths of her devastation, to charm them.
She may have lost her memory and her ability to walk and talk and think clearly, but she could still be utterly lovable.
The pleasantries over, the examination would begin. A doctor would proceed to ask Mom a series of questions that seemed innocuous at first—the types of questions a child would be able to answer. This was a standard neurological test, designed to measure a patient’s “cognitive functions”—to ascertain their level of awareness, their memory, their sense of time and place. It was supposed to be scientific, but I came to dub this process “Quiz Show,” because it was in fact a sham, as crooked and corrupt in its own way as the game shows of the 1950s that were contrived to produce a clear winner and loser.
In Quiz Show as it was played at Mount Sinai, the doctors always had to win—and Mom always had to lose.
A physician would begin by asking “What day of the week is it, Edith?” He would proceed to question her on what year it was, what month, what season. Invariably, he wanted to know who was president—that seemed terribly important, getting her to identify who was in the White House: What is the president’s name, Edith? The doctor would press her, throw in some choices either to help her out or throw her off—I was never sure. Is it John F. Kennedy, Edith? Jimmy Carter? Ronald Reagan?
Did she realize that she was in the hospital? Did she remember what he’d told her the previous morning, during another episode of Quiz Show—that she was a patient at Mount Sinai Medical Center on Fifth Avenue? Where are you now, Edith? Do you know you are in a hospital? What hospital, Edith? What’s the hospital’s name, Edith?
My mother, my dazzling intellectual of a mother who had read all of Proust by the age of fifteen, who had accepted the key to the pasha’s library, would look up at the doctor, her doll’s eyes growing ever wider, showing fear, then embarrassment, and then abject sorrow.
She didn’t know the answers. She couldn’t reply to a single question.
She could only repeat after the doctor, “Hôpital, hôpital,” the French term for hospital. She had no idea that it was Tuesday morning in the summer of 1987, that Ronald Reagan was president, that we were living in America and that she had landed in a Fifth Avenue institution called Mount Sinai that had no connection to God or Moses and was nowhere near a mountain. She looked so lost and I knew—I knew—that she was mortified.
What the doctors failed to see was that while Mom’s memory was gone, she still had the ability to feel.
After the doctor had left the room, after he had flashed a smug, self-satisfied smile my way as if to say, see, we told you so, we told you that she was a lost cause, it is no use, I would put my arm around her and hold her and try to comfort her, my poor child of a mother.
I knew I had to take action—I had to counter the effect of the corrupt Quiz Show. That is when I decided to administer a cognitive function test of my own. It wasn’t too different from those long-ago exams she would give me, when she’d been so anxious for me to attend the lycée.
Edith, I would say, what is Gustave Flaubert’s greatest novel? I gave her a small hint—“Madame B…”
“Bo-va-ry,” she replied shyly, mouthing every syllable.
“Who was the author of A La Recherche Du Temps Perdu? Marcel P…”
“Proust,” she said more confidently.
And Edith, what was Stendhal’s greatest novel? At first, I didn’t offer her clues; I wanted to see if she could answer it unprompted. For Mom, Stendhal was in a class of his own and as I was growing up, she was always quoting passages from his novels.
Edith, I repeated, Stendhal’s most famous work? I saw her straining to remember, to remember. I realized I was being as heartless in my own way as the Quiz Show docs. Finally, I whispered, “Le Rouge…” (“The Red…”).
“Le Rouge et Le Noir,” she exclaimed (“The Red and the Black”), and her voice was booming, and she seemed stronger and more animated than she had all morning, and certainly more cheerful than during her encounter with the doctor.
I saved my favorite question for last. Who is the author of Goodbye, Columbus—“Philip…?”
“Phillipe Roth,” she called out, making Roth sound French.
“And Philip Roth’s aunt in Goodbye, Columbus—what did she love to do, Edith?” I pressed. “She loved to take out the…”
“The garbage,” my mother answered immediately, and she was laughing and I was laughing as we remembered this favorite book of ours, and the section she had loved above all others, perhaps because she, too, was always taking out the garbage back on Sixty-Fifth Street. She would lug brown Key Food bags filled with trash down to the basement several times in the course of an evening, and I’d tease her.
Even then, she was able to laugh good-naturedly about her compulsion. Now I found she could still laugh, that merely by conjuring up Roth’s fictional aunt, both the doctors and their fraudulent Quiz Show were at last forgotten.
When nothing I said could persuade Sinai to let her remain another day, I bundled Edith up and took her home.
We had hired an aide, Sondra Majors, an African American woman, tall and serious, with a quiet, soothing manner to her.
She was waiting for us at the door when our car pulled up.
“Edith,” she said, taking my mother’s hand in hers, “my name is Sondra, Son-dra.”
I saw Mom flinch and her eyes widened. It was her own mother’s name, Alexandra—Alec-Sondra—that she was hearing.
“Alexandra,” Mom repeated, “Alexandra,” and it was as if she had come alive again.
To her mind, my grandmother Alexandra of Alexandria had come back to take care of her: At last, she would have some relief from her agony. And in the weeks that followed, whenever Mom would get upset, only one person seemed to be able to calm her down, Sondra-Alexandra, returned from the dead to look after her daughter again.
Edith did make a comeback of sorts. Simply being back on Sixty-Fifth Street seemed to help. Little by little she walked in the street on her own, without the cane or walker the hospital had given her. But her gait was unsteady. She traipsed about like a drunken sailor, as if she were about to topple over. Sometimes César or I would come home in the middle of the day and find her lugging groceries from Key Food. César would watch her fearfully as she tripped across Twentieth Avenue, expecting her to fall down and send the bag filled with breadsticks and eggs flying to the sidewalk.
She had aides who were supposed to be doing this type of errand, but she tended to dispose of them fairly rapidly. To her mind they were all “des voleuses”—thieves, as she called them in the journal she was faithfully keeping. But there was nothing of value in the house, so what were they stealing? In truth, they were robbing her only of her privacy, her dignity, her sense of self.
The only aide she ever fully embraced was the quiet, mysterious Sondra-Alexandra. But she left us, too, one day, the way they all did—simply disappeared. She went on to another assignment, another sick old lady, I suppose, perhaps one with fewer emotional entanglements. My mother had no use whatsoever for
the stream of women who followed. She would bark at them, grow impatient with them, order them to leave.
They drove her to distraction, these invaders of hearth and home. They made her anxious and restless; she felt as if she were jumping out of her skin. She poured out her anguish in the pages of my used reporter’s notebook. Why did she need someone at her side? How could she keep coming up with chores for them to do?
That was the worst: She had to keep them busy. But she didn’t have laundry for them to wash every day, or new groceries to buy every morning, she complained. What was there for them to do, these marauders who had taken over her home and wouldn’t leave her in peace.
“These women the agency keeps sending will rob me of my last nickel,” she raged in one diary entry. She veered between anger and sadness, between paranoid delusions and an odd clarity about what she was facing. Life was a daily effort to reckon with la strocke.
She was still preoccupied with my father, and in the midst of her own ordeal, she tried to figure out ways to reach out to him. She couldn’t visit the nursing home anymore, at least not on her own—she depended on us to take her by car. Yet she constantly fretted about the shopping she needed to do for him, the grapes and oranges he would enjoy. The doctors may have decided her mind had lost its lucidity, but I found by reading her diary that she had a searing understanding of what had happened to him, and what would one day become of her.
She was perfectly aware how lost they both were. Though she was more than twenty years his junior, they were now sailing in the same perilous boat, she realized, their destinies as closely aligned as on that day in the spring of 1943 when they were married at the Gates of Heaven.
The Arrogant Years Page 27