It was the bow everyone noticed—the enormous, shocking pink satin bow artfully positioned on the halo of dark hair. Some did a double take, pausing to look more closely at this triste elderly woman in the faded blue hospital gown who couldn’t talk or move or even breathe on her own. Why on earth was she wearing such a festive accessory in a hospital room?
By the early 1990s, Mom had become a fixture at Mount Sinai—not in its rehab unit, but in its vast, hopeless wards. The doctors-prophets-fools had been vindicated, I suppose. Edith had deteriorated in ways that I couldn’t seem to control, no matter how hard I tried. With the loss of her faculties, her body would also break down so that she kept getting sick, developing mysterious fevers and viruses and infections, and there was no option but to take her to the hospital. I would ride in ambulances with her and then ride back in ambulances.
I learned to find comfort in the sound of a siren.
Mom’s own prophecy, carefully noted in that makeshift diary, had come true. She and Leon now led parallel lives, neighbors in an assortment of nursing homes and hospitals. There was nothing more they could do for each other and nothing more that she could do for him.
When César or I visited them, we’d put their chairs together side by side, but they still ignored each other.
Both now lived at the Jewish Home and Hospital, one of those large institutions that had proliferated in the second half of the twentieth century to meet the needs of an increasingly fractured America—an America where children moved away and parents and loved ones were left to fend for themselves.
Billions of government dollars were pumped into nursing homes like Jewish Home to provide the care families no longer did. No matter that in reality these institutions provided perfunctory care, and the people forced to live within them suffered at the hands of indifferent nurses, overworked aides, and arrogant administrators.
These institutions loved to brag about how large they were, as if size signified quality. They referred to themselves as five-hundred-bed nursing homes, never as “five-hundred-patient” or even “five-hundred-room” nursing homes because that would have meant the elderly were the priority, when it was in fact only about beds—filling beds, then refilling beds when they became empty, which happened constantly since people were always dying.
I was still waging the war that had begun in Sinai’s rehab unit back in the summer of 1987. It was now more a form of guerrilla warfare, where I’d lob grenades into an immense black hole of a system that seemed impervious to my attacks. I fought on two fronts: in the wards of Mount Sinai and at Jewish Home, where Edith was sent back whenever she was deemed “stable” enough to leave the hospital.
My fiercest attacks were leveled at the nursing home. My brother Isaac had chosen it—Jewish Home was located close to his Upper West Side apartment—and I had been unable to stop him. Besides, he seemed so sure of himself as he touted its Manhattan standards of efficiency and care.
These were the standards.
Every morning, my mother would be woken up at dawn, at six in the morning or earlier, forced out of bed, bathed, and dressed. Then she’d be made to sit in a wheelchair in the hallway until breakfast was served, hours later. Of course, she’d be asleep by then—most of the patients were—too tired to drink the watery, tasteless coffee they served.
Why, I demanded, did Mom have to get up at such an ungodly hour—why not let her sleep a bit more? Impossible, I was told—the night shift left in the morning, and part of their job was to pave the way for the morning shift. This meant that patients had to be roused out of their sleep and washed to lessen the workload for the next group of aides and nurses who trooped in.
That is when I grasped the fundamental truth behind nursing home life—it was driven entirely by staff convenience. There was a cruelty to it all—a viciousness—emblemized by the routine of waking fragile old people every morning at dawn for no purpose, simply to have them sit in a row in a long hallway.
Yet Jewish Home, perhaps more than other nursing homes, was masterful at maintaining a façade that hid the bitter reality. A large poster-size photo of Diane Keaton with an elderly resident hung prominently in the facility. “Diane Keaton loves it here,” I was told, and I did indeed catch a glimpse of the actress one night, furtively coming to visit a patient who had also been a performer.
It was all so seductive, like the gleaming fish tanks in the visitors’ area, and the make-believe coffee shop whose fare was nearly as dreary as what patients were forced to eat upstairs, and the library that was invariably empty. These gimmicks worked for a time on us, too.
Edith, enfeebled by several years of strokes and seizures, couldn’t cope with the harshness of her new surroundings. She rapidly deteriorated and whether I came in the morning or at noon or in the evening, I would find her slumped in her wheelchair, fast asleep. She spoke to no one and barely ate or drank.
My mother had lost any semblance of an identity; she was simply a woman against a wall.
I was actually banned from coming too early. My visits were disruptive to the staff, I was told, and so most often I had to wait till lunch to see her. I’d tap Mom lightly on the arm to get her to wake up, then coax her to eat whatever lackluster offerings were on her tray—some sips of lukewarm soup, a couple of bites of the kosher TV dinner we’d insisted the nursing home, Jewish in name only, it often seemed, provide for her.
Edith was often made to sit near the nursing station, where she could presumably receive more supervision and attention. But I realized it didn’t really matter. I would usually find the head nurse absorbed in her paperwork. Aides would walk in and out of the station and simply ignore her.
She wasn’t even human to them, my exquisitely human mother.
She was only a patient in a wheelchair, exactly like all the other patients in wheelchairs.
I felt powerless to make any changes in her life. The nursing home tended to dismiss whatever complaints I made because I was “the daughter” and they expected daughters to be difficult and had learned to tune them out and to keep doing exactly what they were doing.
At least Dad in his chair in another hallway—the nursing home didn’t put him together with Mom—would scream at the nurses and the aides, defy them, insult them, use choice Arabic curse words to make his displeasure and anger known. But Edith, the porcelain doll of Sakakini, raised from a tender age to be sweet and obedient, simply sat there slouched in her chair against the wall, unable to fight back.
Sometimes we simply grabbed her and fled. I became a master at demanding, and obtaining, day passes and afternoon passes and overnight passes from the Jewish Home apparatchiks. Together with Feiden, who now lived with me, we’d bundle Edith up in our rented car and take her somewhere—anywhere—far from the rancid air of West 106th Street. He would chant “Precious cargo, precious cargo” as he helped tuck Edith safely in the backseat like a little girl, like the child we didn’t have.
We’d go for drives, picnics in the open air, to Fort Tryon Park and the Cloisters, to the Hudson River, locales she once loved and we thought would cheer her, but she was so quiet on these journeys. She’d watch silently from her window seat, a bit anxious, a bit on edge. I’d sit with her in the back and try to reassure her.
“Isn’t Douglas an excellent driver?” I’d ask, and she would perk up and reply that yes, “Dooglas is an excellent driver.”
One morning, we set out for Columbia University, which I hadn’t visited since that year as an exchange student. The main entrance on Broadway was always closed to traffic, yet when we explained to the guard that Edith couldn’t walk, he took the unprecedented gesture of opening the heavy metal gate and allowed us to drive into the campus.
Once inside, we put Edith in her wheelchair and pushed her around the quad. As we pointed out Butler Library—la Bibliotheque—and other grand buildings, she seemed happier and more animated. We sat on the steps, near the statue Alma Mater, and parked her wheelchair. Students kept stopping to chat—they seemed to find Mom utterly adorable. She basked in the attention and answered them as best she could with a trace of her old verve, and I knew that she was brought back to those joyful days when I was a student, and she’d come visit me and bring me groceries and supplies, and life made sense.
Loulou with Edith on a visit to César’s house, Queens, late 1980s.
It hadn’t made sense in so long.
One Saturday, César invited us for lunch and we took Edith and drove to Queens. Once at my brother’s house, we placed Mom in a chair at the end of the dining room table. She seemed so sad, and I tried to draw her out by talking about Cairo and L’École Cattaui. Even a mention of the school was usually enough to put her in a more cheerful frame of mind.
This time my little ploy had the opposite effect. Mom became intensely agitated. She sat up ramrod straight in her chair and her hands were trembling. Her voice rose as she began to talk about the key—the key to the pasha’s library.
I was surprised; it had been a while since I’d heard about the key. “La clef, Madame Cattaui Pasha m’a donné la clef, elle l’a mis dans ma main”—the key, Madame Cattaui Pasha gave me the key, she put it in my hand, she said.
She spoke with pride and anger and a kind of wild, searing grief. As I looked at her sitting there, so fragile and careworn in that dining room in the middle of Queens, I understood her anguish, how far she felt from Sakakini and the grandeur of the pasha’s wife and that time in her youth she had cherished above all others on this earth.
Out of the blue, we heard from the Brooklyn Public Library. They were inviting Edith to the annual Christmas party and seemed anxious for her to attend. The library’s director, Larry Brandwein, was hosting the affair, and her former coworkers from the Catalog Department would all be there.
The morning of the party, I had an aide help me dress Edith in her nicest outfit. We wrapped her in a heavy wool coat and a scarf, then began the long journey from the Upper West Side to Grand Army Plaza. As Feiden drove, I kept telling her we were going back to the library—her library—but she seemed more confused than excited.
“Est-ce que tu te souviens?” I asked when we reached the vast traffic circle that she had once crossed intrepidly to get to her job. “Does this look familiar?” I pointed to the large building in the shape of an open book, once her home away from home. If she remembered, she didn’t let on; she simply stared and I could tell she was nervous. But once inside the library’s grand lobby with its familiar bronze doors and sky-high ceiling, she seemed to relax.
We made our way upstairs and then she was back—back in the cramped Catalog Department where she’d spent so many years.
Her old colleagues were milling about, drinking soda and munching on cakes and cookies. It had always been such a sociable group, cerebral as well as outgoing. I spotted Docteur Alexis, the tall, somber Ukrainian lawyer who had been her first supervisor, and was introduced to the soft-spoken Rabbi Sam Horowitz, the Hasid from Borough Park Mom had loved. Rabbi Horowitz had arrived on the scene a year or two after Edith had started at the library and they’d become fast friends: how she enjoyed consulting him on religious questions. Madame Mudit, her Latvian companion, was also there.
Then I spotted Dallas Shawkey, her former boss and nemesis, and my heart sank.
One after the other, her coworkers came over and embraced her and tried to engage her in conversation. She’d smile, but it was often a blank smile, as if she couldn’t quite place any of them, not even Docteur Alexis, or Mudit, or Rabbi Horowitz, or Shawkey, the man who had driven her out of her beloved cubbyhole.
Though her friends welcomed her back effusively, I could tell they were unnerved by her appearance. The gaunt figure in the wheelchair had almost nothing in common with the elfin woman they had known and whom they’d loved for her wit and incandescent mind. I noticed Docteur Alexis staring our way; I had expected him to be the friendliest of them all. But he was oddly distant and reserved. I was puzzled—of all her coworkers, she had loved him the most; once upon a time, not a day went by that she didn’t come home bubbling over with stories about Docteur Alexis. Was he revulsed or simply spooked?
Perhaps he was more shaken than the rest, I decided, and too honest to pretend nothing had changed.
After the last soda bottle was consumed, the last cookie eaten, and everyone had returned to their desks and their Union Catalog volumes, we had nothing to do but turn around and leave.
As we wheeled Mom out, we took the scenic route, through the library’s ample circulation rooms with their shelves of books and honey-brown wooden cases containing the catalog cards she had once typed with such joy and fervor; I was praying that simply being in these familiar chambers would spark a memory.
Suddenly, we heard someone calling, “Edith, Edith,” and a small man with blond hair came running over to us.
“It is me, Ed,” he said, as he leaned over Mom and hugged her, “Ed Kozdrajski.”
My mother frowned and then broke out into a broad smile—at last, someone she recognized amid the blur of unfamiliar faces.
“Ed—Ed Kozdrajski, is it really you?” she cried, voluble for the first time that day, and I had the sense that the shy, handsome young cataloger—the one that she’d always called “Le gentil petit Ed,” who had been among the first to welcome her to Grand Army Plaza some twenty years earlier—had finally broken through the layers of neurological damage, so that she remembered.
We helped Mom into the car and began the drive to Manhattan and Jewish Home, where none of us had any desire to go.
I arrived one morning to find Edith in her usual spot against the wall. She seemed to be asleep as always except that she also looked extremely pale and when I tried to wake her, she didn’t respond at all; her eyes were also out of focus, and I started to scream—she was either having a stroke, there, in front of us, or had already suffered one, and no one had even noticed.
The nurses and the aides had simply walked by her the entire morning, pushing their medicine carts, doling out pills and juice, without even realizing that one of their patients was critically ill. I shuddered to think of the possibility that an aide had roused her out of bed and forcibly dressed her even when she was in the throes of a major seizure.
The charge nurse was in the station, still intent on her paperwork.
She didn’t even look concerned when I confronted her. She’d no doubt have simply kept on doing her paperwork if I hadn’t ordered her to get an ambulance at once, if I hadn’t screamed at her at the top of my lungs.
At Sinai, the seizures continued for days and nights on end. Mom was placed in a special neurology intensive care unit. It became my home. I would sit there and watch the doctors walk in and out. Nothing the house staff was trying seemed to work. Couldn’t one of these distinguished-looking physicians make the seizures stop? Couldn’t they please make them stop? I was so desperate I took to grabbing doctors I didn’t even know as they came in, and I begged them to please, please take a look at Mom.
It took days for her to stabilize and when she did, she was even weaker—more “compromised” as doctors said—than before. This latest blow left her unable to breathe or swallow. The hospital suggested a feeding tube, because it was now too dangerous to let Mom eat or drink. Then, later, I was told she needed a tracheotomy, because she couldn’t breathe on her own either. Ultimately, she became dependent on a respirator.
As the days stretched into weeks, I took to coming early in the morning to the hospital to get her dressed: Sinai was more liberal—more human—about visiting hours than the nursing home, and I was free to come and go pretty much as I pleased and stay almost as late as I wanted.
One morning as I was helping the nurse get Mom ready, I decided to put a pink satin bow in her hair. Bows were in style, and street vendors on every corner were hawking them. I did it at first simply because I thought she looked so pretty wearing it. Then I realized that it helped her to stand out, and it became a powerful weapon in my arsenal, a way to get Mom the attention she needed.
Suddenly Edith was transformed; she was no longer merely another patient—she was now “the lady with the pink bow.” The bow became a conversation piece as did she. Nurses seemed enchanted by her, and in the midst of their harried shifts, they gave her extra doses of TLC. Doctors came to check on her, and some actually stayed for a while, struck by her loveliness, her sweetness, which the bow brought into relief. That is when I realized that the disease we were fighting, the illness that had consumed her memory, her mind, her ability to walk and talk and even breathe, had left her with one crucial quality that no one could take away and would yet help her survive—her wondrous and bountiful charm.
Why not take Edith home? As Mom lingered in the hospital and fell prey to countless mysterious infections, we were assigned a new social worker, an earnest young woman named Cathy who became my friend and confidant. I told her what had happened at Jewish Home—the countless assaults on my mother culminating in that last awful day in the nursing home hallway.
The thought of taking her back there was unbearable.
Besides, it wasn’t even clear she could return. The horrible irony of nursing home life is that some patients become too sick to live in the average institution. Once they become dependent on a respirator to breathe, for example, they stop being desirable.
“Why not take her home?” Cathy said one morning.
The question hung over the dinner table at the restaurant where Feiden and I retreated after a long day at the hospital. He repeated Cathy’s question, then added his own suggestion: “Don’t let her return to the Jewish Home and Hospital—let us take her home.”
He had recently bought a small duplex for us on the East Side. This meant Mom could have her own room upstairs while we would have our own private living area below her. Only a small spiral staircase would separate us, so we’d keep a watch on her at all times.
With his usual flair for words, he proposed transforming our apartment into “a hospital-free zone.” I wasn’t sure what that meant exactly but it sounded exciting, if sobering: We’d be re-creating a medical intensive care unit in our living room, stocking it with a hospital bed, IV poles, oxygen tanks, gauze bandages, blood pressure kits, saline solution, whatever Mom would need.
I worried at first about my siblings—would César and Isaac and Suzette go along with my plan or put up a fight?
I realized it didn’t matter. I was driven by one goal—never to see Mom in a chair against a wall on West 106th Street again.
Cathy suggested an attorney who specialized in the elderly and knew how to fight entrenched American systems. Of course, my brother Isaac hired a lawyer of his own to stop me. In the past that would have been enough to make me cave, but now I braced for war. With Feiden and the social worker and the attorney on my side, I was ready to take Edith where she had always longed to be: at home with me.
I would finally try to rebuild a hearth—a fragile, antiseptic hearth perhaps, but still a place where we could be together again.
But how?
I started by going on a shopping spree. There was a Woolworth’s on East Eighty-Sixth Street near my house that reminded me of the cherished dime store of my childhood. It even had bins with sale items in the basement. In a surfeit of optimism, I bought sheets and pillowcases and rugs and towels and a pink-and-yellow flowered bedspread. I planned Mom’s homecoming by shopping with abandon and foraging through every bin, as she and I had loved to do.
Mom came home in early December, on the eve of Hanukah, the festival of lights, the holiday of miracles. Years earlier, in our house on Sixty-Sixth Street, instead of lighting a traditional menorah, she would take a set of juice glasses, fill them with water and oil, and insert a floating wick into each. Then, at night, we would light the wicks in the glasses, which we arranged in a semicircle. Edith would put her hands over her eyes and whisper a prayer as we took turns lighting them. She was always so thrilled when the flames lasted through the night. “Nes,” she would declare in Arabic, “A miracle.”
We would find ourselves staring and staring at the flames reflected in the water, as if they contained a divine message.
There were no floating wicks on the Upper East Side, but I did buy an electric menorah from Woolworth’s. It was plastic with small orange lights. That was the last purchase I made prior to her homecoming, after the boxes of surgical gloves, the syringes, the medicines, the cans of liquid nutrition, the creams and salves I’d realized were necessary to rebuild a hearth.