The Lion’s Way

A novel about Tay-Sachs leads author Sarah Leibov to uncover her grandmother’s hidden sorrow—and her own path forward.

Sarah Leibov with her sister, Mindy, in 1985.

Editor’s Note: About one in 27 Ashkenazi Jews carries the Tay-Sachs gene—a good reason why genetic screening is so important. This powerful piece by Sarah Leibov tells a personal story of loss and memory, and shows exactly what’s at stake. This essay is one of 26 included in the anthology The Loss of a Lifetime: Grieving Siblings Share Stories of Love, Loss, and Hope, which is available for purchase here. — Howard Lovy

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I was used to my grandmother retelling the same stories on autopilot, so our discussion that day took me by surprise.

“Did I ever tell you about the book I read, the one about the opera singer whose child had Tay-Sachs?”

“No,” I answered, pausing from rummaging through a cupboard in her kitchen to glance at her. “Was it a true story? What was the name of the book?”

“No, it was fiction. I don’t remember the title. I was reading it and I wanted to mention it to your stepmother to warn her, but she was already pregnant with Mindy, and as you know, it was too late.” My grandmother looked troubled. “I wonder what would have happened if I had told her. I’ve always regretted keeping my mouth shut.”

I had never heard her speak this way. Grandma was in her nineties, and almost never mentioned my sister, who, on the day in 2010 when Grandma brought up the book, had been dead for over twenty years. I had no idea my grandmother thought about her at all.

My sister Mindy was born in 1985. As an infant, she appeared strong and held her body erect when held; in fact, my parents dubbed her “super baby.” However, at ten months old, she couldn’t sit on her own or rock on all fours. When my father and stepmother took her to see specialists, she was diagnosed with Tay-Sachs, a rare genetic disease.

I was ten years old the summer I found out that Mindy was going to die. The first decade of my life had been disrupted by my mother and father’s divorce, and my brother Ben and I struggled to endure several moves after their separation. Shuttled between their two homes, the only constant since their divorce was change. Mindy was my father and stepmother’s firstborn, and for me, her birth was a sign that things were finally going in a better direction. I longed to live with her more often than every other weekend.

I delighted in her long lashes, brown curls, and eyes that resembled my own. Perhaps because I was almost a decade older than Mindy, I considered her to be my baby more than my sister. Ben and I often fought over who could pick her up first and play with her.

I did not cry when my father told us that Mindy had Tay-Sachs and, like others affected by the disease, would die before the age of five. Instead, I carried my baby sister upstairs after dinner to my bedroom. I turned the music up loud and danced wildly, holding her in my arms and singing along to my favorites—Madonna, George Michael, Cyndi Lauper. In between songs, we collapsed on my floral bedspread, as she giggled, eyes shining, seeming to ask for more.

Over the next few years, we grew alongside each other, but while my body was made awkward from puberty and pimples, Mindy’s deteriorated. All the things she once did—holding herself upright, eating baby food, showing interest in toys—faded away. She became blind, deaf, and had to be tube-fed. Our interactions grew less frequent as she lay on a beanbag chair in a corner of the living room, like a beautiful, motionless doll. Touching her might make her startle, trigger the seizures that would cause her eyes to roll to the back of her head and her limbs to flail. I wanted to avoid seeing her like that, to prevent causing her any discomfort.

The last year of her life, my parents sent Mindy to live at Misericordia, a residential center dedicated to caring for disabled children on the south side of Chicago. We’d visit her on the weekends. My father referred to it as “Misery-cordia” and I felt just what he meant. It was hard to know how long to stay because she didn’t know we were there. I felt helpless in her room, filled with other children with similar genetic disorders. My parents made friends with the parents of these children, who had symptoms just as debilitating, but their lives of suffering would be prolonged. Mindy died at three and a half—to the day, her half birthday. It was two weeks after my 13th birthday.

The last time I saw my sister was the morning of her funeral. Jews don’t have open caskets, but the family is allowed to see the departed before they are buried. She was wearing a red dress with tights and Mary Janes, and she finally looked free and peaceful.

I don’t remember who said we were supposed to feel relieved when my sister died, only that I latched on to this because it felt true. I was relieved she was no longer suffering. I told myself that the worst was over, and now I was supposed to move forward. But in clinging to that narrative, there was no permission to mourn, so I carried my grief. I couldn’t escape it.

Until our conversation, I hadn’t realized my grandmother, too, was still coping with the loss of my sister. After we spoke, I searched periodically for the book she mentioned to no avail. I wondered if her aging brain had dreamt it or confused the echo of our family’s trauma with a similar story she’d once read. Tay-Sachs is something you read about in medical books, not novels.

Last summer, a decade after my grandmother died, I found the book when I did a Google search for “fiction, Tay-Sachs, opera singer.” A reviewer on Goodreads, to whom I’ll be forever grateful, mentioned the disease in her review, one of the few written about The Lion’s Way by Lewis Orde. I’d had difficulty finding it because Tay-Sachs is missing from the novel’s description and jacket copy. The book was published in 1981, four years before my sister was born, so the dates fit. I’d found the book my grandmother had read.

I immediately ordered it from my library and a few days later picked it up while on a walk with my husband. His eyes grew wide when he saw how thick it was. I flipped to the end to discover it was almost seven hundred pages. I wasn’t surprised. My grandmother was a prolific reader. For me, though, reading it seemed a daunting task given the already large pile of books I had on my bedside table. I was also writing a memoir and freelance articles, running a small business, and caring for my family. And yet, how could I miss this opportunity to travel back in time to share headspace with my grandmother? How could I walk away from a novel that still troubled her enough to mention it to me decades after Mindy died? My grandmother was no stranger to tragedy. She had lost two sisters of her own, one in childbirth and the other in a car accident, but it wasn’t those deaths she mentioned towards the end of her life—it was my sister’s.

My resistance was not just about the length of the book. I don’t enjoy reading about someone else’s trauma, just as I don’t enjoy writing about mine. It hurts to continue to revisit a family tragedy that occurred in the 1980s, one that my parents barely spoke about after the funeral. When Mindy died, a part of me stopped breathing in solidarity with her, and that felt appropriate. I swallowed my unexpressed sorrow and became a ghost in my own life.

Losing my sister caused significant anxiety and affected the decisions I made for years. I went from being a straight-A student to a teen who could no longer focus in her honors classes. I numbed my feelings with drugs and bad relationships. I dropped out of college a few times and sought therapy before I was able to move forward with my life—before I would allow myself the future Mindy had been denied. Later, as a mother, I grew overly anxious when my sons were sick with temporary illnesses. The loss is something I carry with me always, whether I write about it or not.

My grandmother passed away at age ninety-four, a few years after mentioning the book. During her long life, she made it clear that she loved me and her other grandchildren unconditionally. She never went to college and, despite her love of books, told me she wasn’t a good writer, but that I was. We had a close connection, and I felt privileged to share in her care in her later years.

As my grandmother grew weak in the final months of her life, my mother encouraged me to see a therapist. “Do it now, before she goes. You are going to need to talk to someone about your grief.” And grieve I did, perhaps allowing myself to finally feel all the pain I’d avoided after my sister’s death decades before. I’d be in the kitchen cooking dinner, and out of nowhere, would sink to the floor, my back against the cabinets as I sobbed.

The day we buried my grandmother, a stranger grabbed my arm as the casket was lowered into the ground, directly next to Mindy’s grave. “Did you see that the concrete chamber of your sister’s grave is exposed? That’s very special; they will be resting close together.” I pulled away from her grasp and turned away. I didn’t want either of them to be gone, and I didn’t want to be left behind to grieve them.

Given all that, how could I turn down the opportunity to read this book as my grandmother had, even knowing how fraught it would feel to read it as I was writing a memoir about the devastating effects my sister’s death had on my life? My fulfilled wish to find this book felt as though my grandmother wanted to remind me what she had been through as well. It was an invitation to see it through her eyes. What we didn’t discuss in life–our grief about my sister’s passing–we could share together now, years after my grandmother’s death.

Reading the first page, I saw why my grandmother had been drawn to the book. It begins with the protagonist performing as a tenor in La Bohéme. An aficionado, my grandmother once said that opera was her first love. She spent many afternoons of her youth listening to arias on the radio while restocking the shelves in her mother’s grocery stores.

Only thirty pages of The Lion’s Way depict the main character’s and his wife’s struggle with their daughter’s disease. The scene of the diagnosis is similar to my parents’ experience: there is a moment in the specialist’s office that includes the detection of the tell-tale cherry red spot on their baby’s retina, followed by the tears and terror as the truth settles in for her mother and father. But as the doctor tells the parents about the symptoms that they will see in their daughter as time goes on—the blindness, the weight loss (Tay-Sachs babies lose the ability to eat, to swallow), the convulsions, and finally her death, he tells them that they should consider putting the baby in a hospital for chronic diseases. He warns them that keeping an ill child at home could have a negative impact on the other children in the household. I almost overlooked this.

When the parents explain that they don’t have other children, the doctor recommends it again because of the negative effects it might have on them. The father decides that they will keep their baby at home instead of placing her in a hospital because she'd be incapable of processing what was happening to her, and wouldn't experience suffering. Her parents, of course, would suffer for her, exponentially.

This is where the similarities between the book’s characters and my family end. The father, frantic to escape his devastation, runs off to nightclubs. In his absence, his wife ends their daughter’s life by smothering her before killing herself. With this devastating turn, I can understand why it would be hard for my grandmother not only to read about Tay-Sachs, but to speak of it. There are no good outcomes in this story.

I could relate to the main character’s need for escape. I carried an irrational sense in my ten-year-old body that I should have prevented Mindy’s pain, even though I was helpless to do so. But isn’t the oldest sister responsible for the youngest? There’s always been an undercurrent of failure and shame mixed in with my feelings of loss. It kept me from talking about my sister for years after her death. I understand my grandmother’s grief and regret for not warning my stepmother about the disease after reading The Lion’s Way, but I also forgive it, though I know there is really nothing to forgive. It’s no more her fault than it was mine. And I can continue to share her grief, knowing that she felt similarly. Reading this book offered a portal back in time, knowing that she was on the other end of it, the adult she was, and the adult I am now, a woman who can utilize her experience to speak about Tay-Sachs and other genetic diseases. There are alarm bells to ring, and although the need to do so has passed for my family, I can continue to write and speak about carrier screening, to alert others to be tested so that the same doesn’t happen to their families. When my grandmother lamented keeping her mouth shut, it enabled and invited me to keep mine wide open.

From my adolescence on, I warned friends to get screened for Tay-Sachs so they could avoid a similar fate, but only after that conversation with my grandmother about her regret did I start writing about my sister. I want everyone to know her story so they might learn from her short life. I want meaning and purpose for my sister’s decline and death, and I won’t shut up about it–or the damage witnessing it did to me and my grandmother, and the rest of our family.

I have spent the past decade writing and speaking about Mindy’s illness to inspire audiences to pursue genetic screening. I know my grandmother would be proud. In a video interview filmed before her death, she mentioned all her grandchildren, including Mindy. Together we share the vow to remember my sister, to carry her life forward, to mention her name because she will always be a part of our lives.

Nearing the end of The Lion’s Way I grew teary, perhaps because I was reaching the end of this experience I shared with my grandmother—reading the same book together almost four decades apart and sensing how she must have been moved by the story of an unlikely opera star who, despite his poor upbringing and the tragic death of his wife and daughter, rose to stardom.

But I was also touched by the character’s arc, one which resonated with the satisfaction of a life well lived, despite being touched by tragedy.

There was a happy ending for us, too. My father and stepmother had two more healthy children, both of whom grew to lead fulfilling lives. And my husband and I created our own family with two sons, one named after the aunt he will never know. Mindy’s short life is a chapter in our books, and yet it’s so much more than that. The thread of her narrative, the loss that changed our lives, is woven into our story, richer and deeper than it might have been otherwise. The happiness we’ve experienced is more pronounced alongside its contrast. The impact of her loss reverberates in a way I wish it wouldn’t and gives meaning to the rest of my life in ways I couldn’t have imagined.

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Sarah Leibov is a writer, storyteller, and advocate helping to save lives by inspiring audiences to pursue genetic screening. Sarah’s personal essays have appeared in HuffPost, Newsweek, Tablet, Lilith, and other publications. Her memoir in progress is based on a 2012 article about coping with her younger sister's death from Tay-Sachs disease. “Dancing with My Sister” was published in Jewish Chicago: The JUF Magazine and led to her role speaking about the importance of carrier screening for the Sarnoff Center for Jewish Genetics. Sarah is a Feldenkrais Method creative movement instructor and enjoys sharing her stories onstage and online at www.sarahleibov.com.

Five tiny delights

1. Visiting my sons at college

2. Traveling with my husband

3. Long walks with friends

4. The look of relief on a client's face after a Feldenkrais lesson

5. Dark chocolate

Five tiny Jewish delights

1. Holiday meals with extended family

2. Dan Senor's Call Me Back and Jonah Platt's Being Jewish podcasts

3. Supporting other Jewish writers' events and attending the JBC Writers' conference

4. How I feel every time I hear "Hatikvah"

5. Lox, cream cheese, and tomato on a salted bagel