The day she had a baby, she lost her memory

SAN FRANCISCO — She felt it from the very beginning of the pregnancy — a nagging intuition that something was very wrong, an undercurrent of dread that persisted no matter how many times the doctors assured Samina Ali that she was fine, her baby was fine, everything was normal.

They kept telling her this, even during her third trimester, when clearer symptoms emerged: headaches and vomiting, sharp abdominal pain, dramatic bloating, insatiable itching. At a prenatal visit just hours before Ali went into labor in September 1999, her husband told the doctor that they feared preeclampsia based on the pregnancy book they had at home. “What do you do for work?” the obstetrician asked them in response, and Ali understood what he meant. She was a 30-year-old MFA graduate working on her first novel; her husband was a poet and a lecturer at Stanford; they were two writers who did not have medical degrees, and they were supposed to listen when the specialists at the prestigious hospital in San Francisco told them there was nothing to worry about.

But the two writers, it turned out, were correct. Ali had developed HELLP syndrome, a lethal pregnancy complication widely associated with preeclampsia. As she labored to deliver her son in a suite at UCSF-Stanford Hospital, she was overcome by agonizing pain in her head and chest. She remembers gasping out: “Help me.” She remembers the obstetrician on call, someone she’d never met before, telling her husband, “Your wife is being dramatic.” Ali was having a heart attack and experiencing a series of minor strokes. Her lungs were filling with fluid, and her organs were beginning to shut down. The nurses offered her an Alka-Seltzer.

Twenty minutes after delivering her baby, a son named Ishmael, Ali suffered a grand mal seizure that cut off oxygen to her brain for 30 seconds. She fell into a coma, her brain continuing to swell dangerously; the doctors did not expect her to survive. When she regained consciousness five days later, they called her “Miracle Girl.”

But the “Miracle Girl” did not recognize her husband. She didn’t know she was in a hospital, or that she’d given birth there. She no longer spoke fluent English; the languages she’d once known, all except her native Urdu, had either partially eroded or vanished entirely. A neurologist would try to help her conceptualize the damage, what it meant that there were now clusters of dead cells threaded throughout her brain. “Imagine a jigsaw puzzle,” he said: Where there was once a coherent image, there was now a field of scattered pieces that she would have to try, somehow, to reassemble.

That effort — Ali’s extraordinary journey to rebuild a shattered sense of identity as a brain-damaged mother to a newborn — is chronicled in unflinching detail in her forthcoming memoir, “Pieces You’ll Never Get Back.” Ali, an author, public speaker and continuing-studies instructor at Stanford University, recounts her harrowing experience in short, lyrical chapters, unbound from chronological narrative. These recollections unspool alongside meditations on spirituality and religious allegories of death and resurrection; as a lifelong student of religion and the daughter of conservative Muslim parents, Ali’s near-death experience would transform her relationship to her faith.

It has been 25 years since Ali awoke from her coma and 15 since she started work on her memoir. Since the early aftermath of her injury, her determination to write has been inextricably bound to her healing, both emotionally and cognitively. Seven weeks after she was discharged from the hospital, she forced herself to return to her desk and open the novel she’d been writing before her delivery, the draft that would later become her prizewinning debut, “Madras on Rainy Days,” a tale inspired by her own experiences. Ali sat at her computer, her head still pounding with pain, willing her mind to retrieve her memories and ideas, to summon the correct English words.

The doctors had told her she’d be lucky to salvage her short-term memory, lucky to regain fluency of speech, lucky to raise her child as the mother she’d once planned to be. Resuming her career as an author — that was almost certainly out of the question. But Ali no longer trusted what doctors had to say. She had sensed her mortal peril long before calamity struck, and now her intuition was telling her something else, about how to recover. She would write herself back together.

In the photograph in the family album, Ali is sitting in a hospital bed, oxygen tubes in her nostrils, a thick rope of cords snaked over one shoulder, binding her to the surrounding machinery. She is cradling Ishmael, her 6-day-old infant, in her arms.

“They’re introducing me, to try to help me remember him,” Ali is explaining now, at her home in San Francisco, tracing a finger along the edge of the image. “But there was no connection to him, not for months.”

The still image in Ali’s lap seems to capture a tender moment of joyful connection, a mother smiling at her newborn. But Ali remembers only confusion and cold detachment. She remembers the excruciating heaviness of her son’s head resting against her needle-bruised arms. She remembers dropping him on her lap abruptly and feeling nothing but relief.

“They were all smiling, and I knew I was supposed to be smiling,” she says. “I knew, ‘This is supposed to be an important moment.’ But it didn’t do what the doctors had hoped. It didn’t spark any recognition.”

That spark the doctors had hoped for didn’t come until later, a little over two weeks after she left the hospital, when she held a framed wedding photograph in her hands in her home and, suddenly, her life with her husband came rushing back to her — a torrent of memory and emotion so overwhelming that she found herself frozen, blinking uncontrollably, trying to take it all in. “That,” she says, “is when the amnesia lifted.” Not all of it, though; some recollections would remain out of reach, she says, and even now, she struggles with her memory at times.

Ali speaks in a melodic alto, her petite frame perched on a plush gray couch in her sunlit living room, and it is difficult to conceive that the vibrant woman sitting here on a January afternoon was once the profoundly injured young mother in the photo album. Ali’s son is now grown and lives in London; his parents divorced when he was 3. Ali is 55 (this is a best estimation, she explains; because her parents and an imam in Hyderabad, India, were convinced that she was born under unlucky stars, all documentation of her birth was hidden and ultimately lost). She remarried when Ishmael was 8 years old, and she and her husband, a lawyer, are raising a 15-year-old daughter, Zaara.

It was when Ali was pregnant with Zaara that she started writing what would eventually become her memoir. At the time, her aspirations weren’t literary; she simply wanted to document her story for her 10-year-old son, in case she didn’t survive her second pregnancy. This time, there were trusted doctors monitoring her fastidiously, she says, but, still — “I felt like a ticking time bomb.”

In fact, the idea to write her story had been suggested long before by her neurologist, at an appointment three years after the coma. That day, he told her she no longer needed to continue with follow-up care; she had healed well beyond his expectations. Day after day, for years, she had sat at her computer, pushing herself to think and remember, to compose sentences. At first it was agonizing, she says, but over time, as more words and recollections returned to her, it became a welcome escape. Through that constant repetition, her mind steadily rewired itself around its lost neural pathways — and produced her debut novel.

Her neurologist had never seen another patient make a more dramatic recovery. He asked her what she had done to achieve such a remarkable outcome. “I wrote a book,” she told him then.

“At the very end of that conversation, he said, ‘At some point, when you’re ready, I want you to write this,’” she says, meaning the story of her recovery. “He said: ‘As doctors, as neurologists, we’re taught through textbooks how to look at a patient from the outside if they’re experiencing brain trauma. But you, as a writer, can tell us what it’s like on the inside.’”

She wasn’t ready then, not yet. But in a sense, Ali had been preparing for this task all her life. As a child, Ali’s family moved constantly between Minneapolis, where her father worked as an engineer, and Hyderabad, where she was born. Her parents wanted her and her two brothers to have the opportunity that came with an American education; they also wanted them to maintain a deep connection to their culture and religion. “There was a real desire that they had for us to remain rooted in India, and remain rooted in Islam,” Ali says. “They were so scared that we were going to assimilate.” Her parents were always telling her: Remember who you are.

Who was she? In America, she was the Indian girl; in India, the American girl. Wherever she was, she kept writing, filling notebook after notebook with stories told in a blend of Urdu and English, using fictional characters and plotlines to stitch together the disparate halves of her childhood.

After her brain injury, writing would once again offer a way to reconcile a fragmented inner world — and, ultimately, to describe what that world felt like. Ali’s memoir presents a vivid and visceral portrait of existence within a shattered mind, what it means to experience observation severed from comprehension and emotion:

“The diffuse brain damage had reduced me to my most primal self. I was no longer a writer and a thinker. I had lost those abilities — not just my words but my higher mental processes to imagine, to plan, to create, to reason, those very functions that we take for granted. Those very functions that are intrinsically human,” she writes. “I didn’t gain insight. I wasn’t moved emotionally. I felt no connection to others.”

That included her son, who was cared for by Ali’s mother and husband during the first months after Ali came home from the hospital. During that time, Ali describes an almost feral need for her mother’s care and attention; because her mother was also focused on Ishmael, Ali’s feelings toward her son were more adversarial than maternal.

“For a long time, it was a competition,” she says. “And then, for a long time after that, I was just aware of an absence — where I know, ‘I’m supposed to feel a way about him, I know I should love him, I know he’s my son.’ But there is a void.”

She was determined to find a way back to him, to somehow reignite an instinctive bond. Ishmael was about 3 months old when Ali rented a hospital-grade breast pump and started using it around the clock. The doctors told her that her body wouldn’t produce milk so many weeks after birth, after enduring so much trauma; they were, once again, wrong. “It wasn’t until I started really nursing that I began to feel a connection to him,” she says.

Over time, she found, there were ways that her recovery mirrored her child’s development, allowing her to deeply understand his experience: “I was so conscious of how difficult it is to speak, how difficult it is to walk, how difficult it is to think and to do things that are rational, how difficult it is to understand time,” she says. “I just became so aware of everything as he was developing, and I had so much empathy — I could see how his synapses were firing. I could see how he wanted to walk before he could walk. I was so patient with him when he was learning to speak, because I knew how difficult it is.”

For all that is miraculous about Ali’s story, her resilience and hard-won triumphs, she does not shy away from acknowledging the ongoing reverberations of her trauma — among them, the dissolution of her marriage to Ishmael’s father. During her recovery, “he had become a kind of caretaker,” she says. “It had changed our relationship, and I wasn’t the same woman.” He had always been a devout atheist, she notes, while her experience deepened her spirituality. After Ali’s final follow-up appointment with her neurologist, she and her then-husband agreed to part ways and share custody of their son.

Other losses wouldn’t become fully apparent until years later, after Ali remarried and had her daughter, who arrived safely via an emergency C-section. It was the first time Ali had experienced a remotely normal postpartum period, and she craved the quotidian, mundane tasks of early parenthood: diaper changes, late-night awakenings, long walks pushing a stroller through Golden Gate Park.

But every moment of euphoria and connection shared with her daughter, she says, “was always coupled with the knowledge of loss.” She understood now, with aching clarity, what she had missed with Ishmael, and what he had missed with her. “I’m aware now that I couldn’t hold him. I’m aware now of how I resented him,” she says. “I’m always going to carry that guilt.” Her voice breaks, and she raises her fingers to the bridge of her nose, blinking back tears.

“I always think that I’ve released the grief,” she says finally. “And then it’s always there.”

There is a lesson here, perhaps, in the way we internalize the idea of trauma and loss as something we move beyond or push through; as if such defining experiences do not become an indelible part of who we are, who we are still becoming.

“Everyone assumed that once I rewired my brain, I would be able to pick up my life from where it ended,” she says. “And that’s just not the way it works. I am not the same person I was.”

Until now, Ali hasn’t told many people her story, not in any real detail. It isn’t the sort of thing that comes up in conversation, and she knows that some might find it difficult to hear. She recalls a good friend’s dinner party years ago, when the host urged her to share some of her experience, so she did — until another guest slapped his palm down on the table, appalled: “My God,” she recalls him saying, “we’re having dinner.” Others are more subtle in their unease; they break eye contact, change the subject, move away slightly as she speaks.

She isn’t surprised when this happens. “In American culture, we prioritize youth, vitality and a sense of immortality,” she says. “Look at how we treat anyone who has a disability. When people have cancer, we don’t know how to act. When people are grieving, we don’t know what to say. These things make people really uncomfortable.”

But over the years, there have been some who can’t help but ask her what it felt like — to be in a coma, to almost die. They want to know: What could she hear? What did she see?

She can tell these people are looking for certain kinds of answers, she says, so she is careful in how she responds. In her memoir, she recounts her studies at a Buddhist center in San Francisco, where she learned about the Tibetan concept of Bardo — the transitional state between death and rebirth, where consciousness exists untethered from the physical world. That description, she says, is perhaps the best way to explain what she encountered.

“That was the experience — of the self dissolving, and becoming a point of consciousness in a vast field of darkness. Your connections to this world are gone. You don’t have memories of anything. And so it is very peaceful,” she says. She shrugs slightly; this is, she acknowledges, fundamentally unknowable territory. “Maybe it was the brain damage. Maybe it was something else,” she says. “But it was such a strong memory when I came back, and it stayed with me.”

She doesn’t expand on this specific recollection in the book — “it sounds really woo-woo,” she says, and she didn’t want that to be a distraction — but its effect was life-altering. After a childhood and young adulthood shaped by a strict adherence to the tenets of Islam, Ali describes herself now as more broadly spiritual, and less invested in the rituals and rigidities of religious doctrine.

“I grew up in a very traditional and conservative Muslim family,” she says. “But what I experienced has changed the way I look at things. I don’t take my children to the mosque every day. I don’t steep them in any sort of religious tradition, like I was. I do believe there is something bigger out there, and that is what I teach my children.”

She pauses for a moment, and smiles, almost bashfully. She is still getting used to talking about this, she admits; it is both vulnerable and thrilling to speak so openly about the entirety of what she lived through and how it changed her — how it is still changing her, all these years beyond the book’s final pages.

“When people look at my story, they love the final outcome, right?” Ali says. “It’s so full of hope — ‘My God, here you are. You’re raising your kids, and you’re talking, and you’re walking, and your brain is functioning.’” There is the allure of a tidy resolution, Ali says, a certain endpoint, but she sees things differently now. She still carries the memory of the liminal space between here and there. She is still parenting her children. She is still grieving what was lost and still learning what it means to live her life as this version of herself. “People love a finish line,” she says, and smiles again. “There is no finish line.”

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