I’d just hopped on an airplane, on my way home from a tennis weekend with friends, when my daughter, Elana called—a phone call that would send me reeling.
“M-o-o-o-o-o-m-m-m-m-m,” she wailed.
It was an animal sound—wounded, and raw with rage. Between sobs, I learned that my granddaughter Gracie’s brain MRI showed damaged white matter, meaning injury to motor neurons that determined body movement, the diagnosis cerebral palsy.
I had no words. We’d been waiting for the results of the brain MRI of Gracie, Elana’s second-born, recently done because of her failure to meet developmental milestones by her first birthday. We’d thought the imaging study perfunctory, that the pediatrician was being cautious in ruling out any serious problem. Elana’s pregnancy and delivery had been normal, so the news blindsided me.
“This can’t be real.” Elana struggled to catch her breath.
“Lani, I’m with you. We’ll figure this out.”
I had no clue how. It was time to prepare for take-off—a more fitting metaphor than I’d anticipated—and I flew home in a daze. I suddenly realized how fortunate I’d been. I’d never had serious medical problems in my family. Until now. I wondered how I would cope.
My days took a shift in focus. Until then, I had been building my post-retirement world after leaving a psychiatry career that spanned thirty-five years. My time filled up with book clubs, writing projects, tennis matches with friends, and visiting our grandchildren with my husband, Fred. Retirement was my time to explore new interests after finishing my career and after raising six children. I had relished the freedom and the less structured time.
But soon after Elana’s call, I fell back on my caretaking skills—familiar ground. I reorganized my life, made cross country visits to Elana and her family, and took tearful phone calls, while trying to process my own feelings and not break down myself.
What pushed me further into my distress, was witnessing Elana’s pain, an ongoing occurrence during those days. In addition to my own reaction to Gracie’s diagnosis, I struggled to separate myself from Elana’s spiraling moods, her sadness, anger, discouragement, and sense of loss. They affected me more than I wanted and remained with me longer than I’d expected.
Around that time, I was reading two separate novels that involved a main character described as a “sin-eater.” The word sounded primitive, haunting, and evocative of archaic religious practices. Maybe my gloomy mood led me to imagine such darkness.
Intrigued by the word, wondering about its origin, I decided to look it up. The Welsh word “sin-eater” was first used in the 1600s to describe a poor person hired by someone of wealth to take on the sins—gluttony sloth, envy, covetousness—of their dearly departed.
Reviled for their contaminated souls, sin-eaters, contrary to the wishes of the Church of England, were called to funerals to relieve sinners of any wrongdoings they carried into death. The sin-eater consumed a ritual meal at the funeral, symbolically ingesting the sins of the dead, and absolving them of their transgressions. A specific prayer from old Celtic and Welsh folklore was recited: “I give easement and rest now to thee, dear man. Come not down the lanes or in our meadows. And for thy peace, I pawn my soul. Amen.”
Modern literature and film use the term more liberally, to describe people who take on others’ troubles—their traumas and torments, darkening their own psyches. For example, in Michael Connelly’s novel, Waiting, the therapist, Dr. Elingburg, called detective Renee Ballard a sin-eater, explaining that she internalized horrors from her job, kept them inside, and then they came out in symptoms of insomnia and agitation. She explained to Ballard that taking in the pain of others camouflaged her own.
As a psychiatrist, that psychological conceptualization of the sin-eater resonated with me. It wasn’t that Elana’s soul contained sins for me to consume like the sin-eaters of old, but I felt that I’d taken on her traumatic moods, becoming a sin-eater, in contemporary terms. Maybe I held the wishful thinking that absorbing her anguish would purify her or purge her of those fraught emotions. More truthfully, I just couldn’t help myself. In my career, I’d been accustomed to hearing other people’s stories of trauma and stress, but with patients I could separate and help them through their pain. Because she was my child, I couldn’t easily detach from Elana’s suffering.
Nine months after we learned of the diagnosis, Elana, Michael, their children, Harry, and Gracie, and two dogs, temporarily moved in with us, after relocating from Boston to California. That alone was an adjustment. After being empty nesters for ten years, we now cooked dinner regularly, made room in our already overflowing cupboards for sippy cups and rubber dishware, repurposed the family room into a children’s play area, helped with bedtime, and babysat when needed. We were privy to breakfast table readings of children’s books, Lego ™ castles, temper tantrums, and group hugs. After the quiet environment of two retirees, Fred and I were once again adjusting to the lively chaos of life with young children, the abundant emotional interplay, along with the growing pains.
One day, Elana, Michael and the kids returned from an outing to the playground. Gracie, at almost two-years-old, couldn’t walk or get herself into a sitting position without help, so the park outing was a difficult event. Elana arrived home in tears.
“Mom. I can’t go to the park anymore. It’s too triggering. I watch Gracie and see that she can’t do what the other kids do. And I think the other moms look at me weirdly, like they don’t know what to say. Maybe I should just stay home.”
My heart broke upon hearing her troubles, but I pushed my pain aside.
“Lani. I’m glad you went. For Gracie. And for you.”
I had no more to say as I imagined the scene—Gracie, seated in the sand, watching Harry and the other kids, toppling over onto her belly, unable to move other than her army crawl. Other mothers stealing glances at Gracie and turning away. I was angry but I wasn’t sure what or who I was mad at; fate, God, errant biology, viruses, whoever or whatever decided that Gracie would be disabled.
I kept thinking that it should be easier for us, both Elana and I, as physicians. Having access to medical knowledge, shouldn’t we feel more comfortable in this kind of situation? We were fortunate to be able to be proactive and research medical possibilities for Gracie. But I felt that medicine had abandoned us. If there was something I didn’t know, I expected to find medical answers. Here, answers were vague, and because it was for my granddaughter, it was particularly frustrating and difficult.
“We’ll have to wait and see,” said one neurologist when we asked if Gracie would ever walk.
“Gracie will tell us what her future will be,” was another answer. I understood, but as a practical person and a physician, the ambiguity grated on me. I yearned for solutions.
I found myself wanting to shoot the messengers, to erupt at the physicians, though I knew that medicine dealt in uncertainties. The situation called for patience, which was not easy. Elana believing that medical answers “should” be available, spent hours searching the internet for medical articles that would give us clarity about Gracie’s future. Having none, Elana went down rabbit holes of despair, worrying about problems, both common and remote.
One day after hours of research, Elana said, “Mom, she might have speech problems because of her muscle weakness. What if she can’t even communicate?”
“She’s got a few words already. I think she’ll be okay.”
“But you don’t know.”
She was right on that one. Elana wanted clarity. So did I, and Elana’s emotional struggle added to my own.
Like a sin-eater of old, I wanted to devour my daughter’s pain, ingest it like a corpse cake, and make it disappear. “And for thy peace, I pawn my soul. Amen.” With that, I wouldn’t have to bear witness to Elana’s distress. I would relieve myself of my own discomfort watching my daughter’s. If only I could.
My friends considered me fortunate. Since Elana had finished her dermatology residency and stayed with us until they bought a house, all three of my daughters with their children lived nearby. I did feel lucky in that regard.
One of the benefits was that my husband, Fred, and I, hosted shabbat dinners, the Friday night Jewish celebration of the week’s end. I remember one October evening, back then when Elana first moved in with us. Pink and lavender clouds floated across an orange sunset. We listened to the cry of seagulls traversing the horizon—sky to ocean and back. An autumn chill had set in. The cousins reacquainted themselves with one another.
Rachelle, my youngest daughter, brought her first child, Laila, 6 months old at the time. We sat on the floor in the family room, and I watched as Laila positioned herself to crawl, though she hadn’t quite accomplished her mission. My thoughts shifted to Gracie, several feet away, almost two years old, lying on her belly on the carpet, waving her arms and extending her legs in excitement. Laila will crawl in a few weeks, I thought. A sadness weighed on me, and I hoped that Elana wasn’t nearby. I wanted to protect her from my reaction and from the scene with Laila and Gracie together.
“What are you thinking?” whispered Rachelle, who sat on the carpet next to me.
“Sometimes it’s hard not to compare,” I said.
“I get it,” said Rachelle.
I tried to temper my sadness and reminded myself of Gracie’s gifts—her spunk, her determination, her calm temperament, yet I worried for her future and for Elana’s.
As I watched Gracie, in love with the world, oblivious to the worry of others, happy to be with her cousin, I pondered the sin-eater concept. In many cultures, sin-eaters, considered pariahs, outcasts, and lost souls, cut themselves off from social intercourse. They lived alone in remote areas, hiding from church officials so as not to be caught and executed. Richard Munslow, one of the last known sin-eaters, buried in England in 1906, had been a well-to-do English farmer, and not a social outcast. It was believed that, with the early death of four of his children, three in one week from scarlet fever in May of 1870, his grief drove him to resurrect the sin-eating ritual.
In my brooding mood, I wondered how I came to so thoroughly overidentify with Elana’s distress. In Waiting, Dr. Elingburg tells detective Ballard that she has subconsciously masked her trauma of losing her father and being abandoned by her mother with vicarious trauma from her work as a detective. Taking on the pain of others submerged her own. Richard Munslow suffered the death of four of his children, leading him to the life of a sin-eater. I figured that I became a sin-eater, taking on Elana’s distress, so that I wouldn’t have to experience the totality of my own reaction to Gracie’s disability.
During that time, my sleep became disrupted by fraught images—my daughter’s tears, my granddaughter flailing. These depictions of helplessness flashed through my mind, even though I knew that the entire family was taking positive actions to help Gracie.
I found myself reluctant to make plans, and for the moment, food became my comfort. Like a sin-eater’s funeral biscuit, I sought out and consumed sweets thinking they’d numb my pain, which they didn’t. I finally realized that eating all the chocolate in the cupboards was not the answer. It occurred to me that sin-eating was a way to avoid the necessary struggle that could lead to a change in attitude and thought. The arrangement between the sinner, and the sin-eater, denied both the opportunity to transform. I began to realize that Elana and I needed to find our own paths through this adjustment.
Around that time, Elana investigated an intensive physical therapy program in another city, where Gracie would work daily with physical therapists in the cerebral palsy field.
“Mom, do you want to come? It’ll be a week. We can sightsee in our spare time, like a vacation,” she said. “Michael’s parents said they’d visit. We can all get together. It’ll be fun.”
“That sounds great.”
I’d always enjoyed Michael’s parents but didn’t see them often as they lived in Texas. This would be a bonding opportunity for Fred and me, and a time for us grandparents to circle the wagons around Gracie, Harry, Elana, and Michael.
It hit me then that Elana was no longer stuck in grief. Her voice seemed lighter. She planned get-togethers. She had created inspirational Instagram posts of Gracie, with upbeat music, and captions of hope—“grow where you’re planted,” “fierce, sweet and living with CP.” Elana didn’t need me to absorb her trauma. She was finding her way.
I needed to find mine.
With that realization, the sin-eater within me began to let go. Releasing my distress over my daughter, I began to face my own fears about Gracie. I recognized that helping our granddaughter would be a lifelong commitment. How long would I be healthy enough to help? Would I witness her find her way forward to make a life for herself? I became painfully aware of my mortality, and with that, my limitations, and my humanness. I would offer what I could—love, support, family.
To help myself develop patience for Nature’s unknowable ways, I did what I frequently do. I began reading, stories about disabled children, and about how others navigated these issues, finding their way to acceptance and fulfillment. New challenges would present themselves, but ordinary people like me, could rise to the task. That gave me encouragement. From physician-written books, I learned about neuroplasticity—how the brain changes—and that gave me hope.
As my daughter busied herself with earning a living and caring for her two children, I took on the role of reader, reporting my “findings” back to Elana, and I felt useful.
Around that time, I realized that I had been making excuses not to attend pleasurable outings that I’d looked forward to in retirement. Maybe I inhibited myself because I felt guilty that my life could go on uninterrupted while my daughter struggled. Maybe I just wanted to wallow a bit. But then one morning, I decided to show up at one of my book clubs. Kathy, the leader for the day, asked each of us to share their favorite summer experiences as we moved into fall. The other women spoke of summer vacations they took, grandchildren they visited, and the various joys they’d experienced—long lazy days, summer evenings, family.
When it was my turn, I couldn’t help but share what consumed my thoughts. “I’ve been home. My daughter moved her family in with us since she finished her residency. We’re excited to have them, but Gracie, who is two, was diagnosed with cerebral palsy. We’re just getting used to the diagnosis and don’t yet know what it will mean for her. So, she’s always on my mind. It’s been a big adjustment.”
I thought about how distant I’d been from enjoying a summer adventure. Attending the book club was the farthest I’d traveled—a mere few miles—in a long while. I feared I’d disappointed the group with my story.
“Sherry, sorry that you have to go through this. It’s not easy,” said C.C., one of the regulars. I’d recently joined this group. I didn’t know C.C. well, though I’d always enjoyed her insight into the books we read.
“Let me tell you about my son, Steven,” she said inviting me and the group into her personal story.
Her son, diagnosed with cerebral palsy, and microcephaly, a medical condition at birth involving a smaller than normal head, defied the odds, finishing high school, and playing baseball along the way.
“True, he still lives at home at 29, but he holds down a job, and he’s a happy guy with a great sense of humor.”
She laughed, and I suddenly felt a rush of gratitude.
“Thanks,” I said.
I relaxed, the tension leaving my body. I’d been afraid of burdening the group with my stress, but C.C. offered her story, a sense of community, and perspective. As a psychiatrist, I knew the value of talking about stresses with friends and family, creating community, but I hadn’t realized how good it felt to find support until this moment, when my heaviness suddenly lifted, and the room seemed brighter.
One day, soon after attending the book club, I babysat the grandchildren and carried Gracie out to the backyard to play with her brother. Harry scootered around the patio. Gracie’s strawberry blond hair reflected the sun. She squirmed, waving her arms towards Harry. I carried her to her pink car—our then go-to mobility device for her—and set her in the seat, pushing her towards Harry.
“Harry,” she called out. “Harry.”
Her trunk twisted to the right, and I feared that, with her poor core strength, she would tumble out of the car. I went to help her sit upright but saw her do it for herself. She moved her body back to center, sitting up straight. Then she purposely twisted in the other direction and laughed, righting herself again. We went on like that, me pushing and Gracie delighting in her movement.
I rushed to record the event on my phone, smitten by Gracie’s determination to move and by her two-year-old sense of humor, eager to share the event with Elana and Michael. Gracie wanted to move, to join her brother. Her motivation to use her abilities and to find her way, helped me to find mine, and I became her besotted fan. Yet, I knew that she would be on a different path from most kids, and as I tried to envision her journey, I hoped that that path would not be too arduous.
One evening, I sat at the kitchen table in a stolen moment of quiet while Fred made dinner. The aroma of fresh basil permeated the air, and the rhythmic chopping of his knife relaxed me. Elana and Michael lounged on the couch in the family room, scrolling on their phones as Miss Rachel entertained the children from the television. Gracie stood in the stander, a steel contraption that held her upright so her bones could benefit from gravity’s pull. She sucked her thumb, eyes focused on Miss Rachel. Harry played with his toy car while watching the show. Searching online for toddler placemats, I lingered a bit and then selected a solar system theme for Harry, and ABCs for Gracie. A calmness settled over me and I felt content, hopeful for the future, absorbed in the moment, shoring up energy for the unfolding story of Gracie and of our family.
Sherry Mendelson is a writer and psychiatrist living in Southern California with her family. Her writing has appeared in The Wall Street Journal, Brevity Blog, Tablet Magazine, The Jewish Journal, Wilderness House Literary Review and others. She is currently working on a memoir about becoming a physician and psychiatrist in the days when few women found their way to the profession.