Late July 1985. I am stretched out on a chaise lounge at Elm Beach, a man-made lake in the Pocono Mountains. Greased with sunscreen, I’m immersed in a rabbinic text, one of many books I brought with me to prepare for my fall sermons, adult education classes, and other synagogue duties. Around me, dozens of kids play—with inner tubes, kickboards, shovels, pails, and sieves. The cacophony of laughter, yelling, and the occasional whistle interrupts my reading. My two daughters, eleven-year-old Nogah and nine-year-old Orah, both accomplished swimmers, engage in a competitive round of Marco Polo while Erez, our younger son, almost three, busies himself on the shore making mud pies. My wife, Leah, sits at the water’s edge, chatting with friends and keeping an eye on things. Our other son, Eyal, four years old, plays nearby. He “swims” by flopping in two inches of water, rolling over several times, and giving his best impression of a beached whale.
A bell chimes, and soon we are serenaded with the theme song from the old movie The Sting. Three o’ clock, right on time: the ice cream truck has arrived. I hum along as kids abandon the water and run to their parents, demanding money. They descend upon the truck like ants at a picnic. Eyal, our chubby toddler, with his straight strawberry-blond hair, a face like Buster Brown, terrific pinchable legs, and a tummy that hangs over the waistband of his red bathing trunks, leads the way.
He orders his Fudgsicle, gulps it down, and gets back in line. While other kids are still running to the truck, clamoring for firsts, he wolfs down his second serving and gets back in line yet again for thirds.
With Eyal, there is never any in-between. He is a child of extremes. He exhibits tremendous intensity and concentration, spending hours at the kitchen table working on a jigsaw puzzle of several hundred tiny pieces without getting discouraged. At these times he is precious and darling, but at other times the force of his emotions shocks us. His temper tantrums go far beyond anything we’ve experienced with our other kids. Five or six times a day, his body goes rigid and he emits a piercing howl while staring up at us and pulling at his ear. Nothing we do can end these episodes; they last until he drops to the floor and falls asleep, exhausted. But when he awakes from his sleep, he is instantly his precious self again—as if nothing has happened.
I watch Eyal move again up the line, thinking to myself, This is one of the good moments. Smiling, I consider how much I love my family, my life, and this place. Normal, everyday life, lived to its fullest. Simple, peaceful pleasures thoroughly enjoyed. Is there anything better? I believe it will last forever.
• • •
I can’t remember a time when I didn’t want to be a rabbi. I enjoy the rituals, the emphasis on family and community, and the intellectual challenges. Being Jewish feels natural to me, almost instinctive. I attended Jewish day schools and grew up in a home with a strong Jewish presence, from the kosher food my mother prepared to the Shabbat candlesticks, to the Kiddush cups, to the prayer books, to the Humashim (Bibles), to the Jewish newspapers. Judaism wasn’t just a part of who I was; it was everything. Almost everyone in our neighborhood was Jewish. My father, an immigrant from Eastern Europe, made the synagogue community our extended family. It was always an honor to have the rabbi visit and enjoy a cup of tea or stay for dinner.
Very few people get to live their dreams. But there I was, forty-one years old, the rabbi of a major congregation in Syracuse, New York, and married to my summer camp sweetheart. As a preacher, I was passionate, creative, confident, energetic, and well-known in the greater community. I was on a career path that I believed would one day lead me to become rabbi of the largest, most prestigious synagogue in North America. I was also on my way toward building the large, warm, tight-knit family I had always imagined. My children were growing up with a strong sense of identity and appreciation for Jewish values, and they were turning out to be good kids who cared about one another and knew how to get along. I could imagine the day when each of them would graduate from college, fall in love, find meaningful work, and build a strong, cohesive family of his or her own.
Not that every last detail was perfect. I had more trouble than most balancing career and family. My job encompassed not merely the administrative side of running a synagogue of about one thousand families, but officiating at weddings, funerals, Bar/Bat Mitzvahs, and other life-cycle events; writing sermons; teaching adult education classes; overseeing a Hebrew school and youth programs; counseling people in distress; and participating in community events. I had to be ready to handle an emergency at a moment’s notice, and I had to look the part of the serious, dignified rabbi at all times.
Except when I was at Elm Beach. There, nobody knew me as a rabbi. There, I could hang up my usual attire—dark suit, white shirt, sedate tie, wing-tipped shoes—and dress in a bathing suit and flip-flops. There, I could be my authentic self, joking around without worrying what others might think. There, I could forget about spiritual questions and focus all of my attention on what we would eat for lunch or what book I would read for pleasure after the kids went to bed. In an age before laptops and cell phones, Elm Beach was the closest thing I had to an escape, and I treasured it.
• • •
On his way back to the water, Eyal stops by my lounge chair, licking fudge from his fingers. Chocolate is smeared on his upper lip, chin, and cheeks. “Eyal,” I ask, “did you bring me anything?” He hands me a clean stick and two nickels. “Thanks, buddy,” I joke. Grasping the other two sticks, he darts off to Leah at the water’s edge. Finding a small blue bucket, he plops down and begins to dig with his shovel and the sticks. Pretty soon, all of the kids have gathered around. Eyal and Erez dig vigorously, and a playful water fight has broken out between Nogah and Orah. My wife takes out tissues to wipe Eyal’s face. She rubs more sunscreen on the kids and admonishes Nogah and Orah to stop splashing. Once again I reflect on what a wonderful, simple moment this is. Everything feels right. Everything is good. Everything is in its proper place. Smiling to myself, I return to my book.
• • •
We cannot always identify the precise point in time when our lives are transformed. For my family, it was 2 A.M. on a frigid March night, eight months after that trip to Elm Beach, when I awoke to a child’s whimper.
“Leah,” I said, “Eyal is crying.”
“Yes, I know.”
The last thing I wanted was to crawl out of bed. But Leah was six months pregnant with our youngest daughter, Nitza, and her physical state took precedence. I tiptoed to Eyal’s room so as not to wake the other kids. His Sesame Street comforter was rolled into a ball, his pillow on the floor. Clearly he had not been able to find a comfortable position. I felt his forehead and found it very warm. Not good, but not a disaster, either. I would give him Tylenol and call our pediatrician in the morning.
“Eyal, let’s go to the bathroom.”
“Eyal, let me help you. You’ll feel better.” I reached into the bed, the old fireman’s carry. “Here, let Abba carry you.”
I carried him the few steps to the kids’ bathroom, the “blue bathroom,” as we called it, tiled in retro blue and cluttered with hair ribbons, cartoon-character toothbrushes, and bath toys. Easing him down the side of my body, I placed him before the toilet, maintaining a strong grip on the sides of his hips. Without my assistance, he would have crumpled to the floor. I attributed his fatigue to the late hour. Then I noticed his pasty color, his jiggling legs, his incoherent speech. His favorite yellow and red pajamas were drenched in body fluids, and his eyes were distant and unaware. At that moment, before I even called out to Leah for help, I knew: something was terribly wrong.
Over the next twenty-four hours, we went from pediatrician to radiologist, back to pediatrician, to pediatric surgeon, hospital admission, general pediatric unit, and finally, to the pediatric intensive care unit (PICU). At first, they said he had pneumonia, then congestive heart failure. They tapped and drained his chest cavity of several quarts of fluid and placed him on oxygen. They intubated him and put him on a ventilator to sustain his breathing. They restrained his hands to keep him from pulling out the tube in his mouth that stretched down his trachea. They ran test after test. Finally, this is what we were told: Eyal had a lesion the size of a golf ball intertwined in his brain stem, the part of the brain that controls basic human functions, breathing, and blood pressure.
“Take him home, enjoy whatever time you have left,” they said. “If you’re lucky, you’ll have a year. More likely, just weeks.”
It was devastating. As a rabbi, I often lent moral support to others when they received such news. Now I was the one being told to make the most of a short amount of time, and I didn’t know what to do. The doctors had given up on Eyal. They didn’t allow the slightest glimmer of hope. Somehow, we were supposed to do nothing about Eyal’s condition—just sit back and watch him die. More difficult still, cruel even, we were supposed to “enjoy” these last moments.
Leah and I weren’t ready to let Eyal go. There had to be an answer, we thought, treatments or procedures our local doctors didn’t know about. We called anyone with the slightest knowledge of Eyal’s condition. When one lead didn’t pan out, we found other leads. The challenge occupied our minds and prevented us from becoming despondent. We felt that we were at least doing something; we had not yet exhausted all options. Given our fierce love for Eyal, we were prepared to do anything in our power—anything—to keep him alive.
We finally found a surgeon in New York City willing to operate on our son, well aware of the serious risks. Eyal came through the surgery, with most of the lesion removed. Our hope was restored. We were jubilant. Then, a few days after the surgery, he suffered a brain-stem stroke and slipped into a vegetative coma.
Four months passed. Leah and I stayed with Eyal, leaving our other kids with my parents back in Syracuse. We lived out of a suitcase in the hospital’s parents’ room, taking turns sleeping and sitting bedside. When Eyal woke up, he was intellectually intact. Mouthing his words, he told Leah and me his name, who we were, the names of his siblings, the numbers up to ten. He even smiled when I made a joke. Eyal was Eyal! Responsive, kind, funny. But his body was totally broken. He was quadriplegic, vent dependent. Our joy at being able to talk to him, at seeing him smile, was tempered by our fear and apprehension about his physical limitations.
We knew that his life—all of our lives—would be different. Only a handful of kids with Eyal’s physical challenges had ever survived more than a few years. All the normal things I had expected to witness during Eyal’s childhood—Eyal hopping on a school bus for his first day of kindergarten, learning how to play basketball in the driveway, learning to write his name—would never come to pass. He would always require intensive and expensive round-the-clock care; our lives would revolve around monitoring him and providing for his medical needs. Forget about casual family evenings out. Forget about family vacations. Summers at Elm Beach would be a thing of the past.
Six months after that horrible night with my feverish son in the blue bathroom, Eyal was transferred to a hospital in Syracuse about a mile and a half from our home. Eighteen months later, we moved him again, to a specially equipped room in our house. It had been just over 730 days and finally we were able to come home with our son. Leah and I made sure that someone in our family was with him twenty-four hours a day, no exceptions. My waking hours were divided between serving as rabbi and attending to Eyal’s needs. Our privacy was invaded, with nurses and other caregivers coming and going throughout the day and night. We had accepted that this was the way it would be. We had no choice. At least he was alive.
• • •
Years passed. Eyal did not succumb, as we had been told he would, and our family managed to survive, even thrive, under the strain. Leah and I reclaimed a reassuring sense of home, not merely for Eyal but for all of us. Sure, there were countless hospital admissions, sometimes lasting months, but we always managed to bring him back and start again. When we had him at home, we did not sit around agonizing about all Eyal and our family couldn’t do. Instead, drawing on internal reserves we didn’t even know we had, we focused on making the most of what we could accomplish. We surprised ourselves. No, we couldn’t live our lives exactly as we had been accustomed to, but we still experienced and sustained joy, love, and delight. We achieved a “new normal,” not by putting the traumas behind us and moving on—that was impossible—but by discovering that we could live with what we had lost and, out of that, build something new.
This adaptation didn’t happen all at once, and it didn’t come easily. In my case, it required a comprehensive change in outlook—an intellectual, emotional, and spiritual shift that began that night in the blue bathroom. Prior to my son’s illness, I could be self-centered and arrogant. I saw the world in black and white; it was either yes or no, right or wrong, kosher or treif, my way or no way. Afterward, I looked more honestly on my strengths and limitations and found myself more accepting, tolerant, generous, and forgiving. I came to distinguish between the essential and the irrelevant, and so began to live my sermons rather than just mouthing nice-sounding platitudes.
I learned to appreciate friendship and honest, authentic connections with others. I learned to embrace a broader definition of community, realizing that illness and vulnerability don’t observe distinctions based on class, gender, race, national origin, and faith, and that random acts of kindness can come in the most surprising of places from the most surprising of people. I learned the value of real prayer and developed a richer, more meaningful relationship with the Divine. I came to open myself up across many dimensions of life, not perfectly, but enough to allow me to dream new dreams and feel happy and grateful for what is.
• • •
Today Eyal is thirty-two years old. He still lives with Leah and me at home. He is physically compromised, dependent upon others twenty-four hours a day for his most elementary physical needs. A ventilator breathes for him, while a feeding tube provides nutrition through a hole in his stomach. An ileostomy bag handles his waste; a vesicostomy, a small surface opening in his stomach, allows urine to flow freely; tarsorrhaphies, in which both his eyes are partially sewn shut, prevent corneal breakdowns.
Eyal cannot speak, walk, or move his limbs. The aggressive therapies given to him have left him with hearing loss, low blood counts, and kidney failure, among other problems, while his lack of mobility has made him vulnerable to bedsores, wound infections, and broken bones. We still cannot say how long he will live. A large chunk of the lesion remains in his brain; it appears to be inactive, but every six months he goes for a brain scan. Given how compromised his immune system is, the slightest illness—even a common cold—poses a dire threat. Just when we think nothing else can go wrong, wham, it does.
Despite all this, Eyal’s mind still functions well, and in fact he sees himself as a “regular kind of guy.” He recognizes that his health is fragile and that most people don’t depend on all kinds of medical equipment for their daily survival. But because we have gone out of our way to include him in the life of our family and community, because we have treated him as “normal” and prodded others to treat him that way as well, he has come to think of himself as occupying his own proper place in the world.
It took him twelve years, but he graduated from Syracuse University with a degree in fine arts. He faithfully attends religious services at my synagogue and participates on the pulpit, albeit without speaking. Thanks to the Internet and a computer he controls with his chin, he keeps up with what’s happening in the world. He makes some of his own decisions: what he wears, what he wants to do, who he wants to interact with. Although unable to talk, he still expresses his desires passionately. Not that we let him get away with anything. He teases us, and we tease him back. He is our Eyal. He has grown from the four-year-old, Fudgsicle-eating child at Elm Beach into a smart, artistic, thoughtful, compassionate thirty-two-year-old man. I am proud of him, proud that he is my son. I am proud of us for doing all we had to do, and continue to do, to help him become who he is today. And I am proud of all that I learned along the way.
• • •
I began writing this book of stories and reflections without knowing it in March 1986, the day of the blue bathroom. During many intense, anxious, nearly impossible nights spent awake in hospitals or sleeplessly pacing the hallways of our home, I scribbled on three-by-five cards, scraps of paper, even napkins. At first, the notes were practical in nature, items like questions for the doctors, lists of resources, and telephone numbers. Then I began to include random musings, details about people I had met and events I had witnessed, sayings that stuck with me over time. I did not admit it to myself, but there was another reason for keeping a written record of our experience: Writing allowed me a means of processing the incomprehensible. Writing allowed me to be both patient and therapist, to be parent and child, to be rabbi and congregant.
I may have had my notes in hand, but I wasn’t ready to write a book about my family’s experience. I wasn’t ready even to talk about it. People in our community kept asking: How did we do it? How had our marriage survived? How had we maintained our faith? How had we prevented our other four kids from becoming mean, cynical, angry, messed up? Behind these lingered other, deeper questions: How had we resolved that awful contradiction between good and evil? Where had we gathered the strength and emotional resources to get up and greet the next day?
After some years had passed, I realized I needed to talk. The tragedy we faced, the shattering of our dreams and the peace we had known, was not just my family’s story. Everyone experiences difficult, life-altering circumstances at some point—the death of a loved one, illness, divorce, professional setbacks, economic failure. Some people are destroyed by tragedy and loss. They wallow in self-pity, their spark of life extinguished. Or sometimes people respond to difficulty and trauma with anger. They carry their heartbreak with them and go on to live painful, unhappy lives. But I can see now it is because of Eyal’s unique circumstances that my family and I have come to affirm and celebrate life in a rich and meaningful way, beyond what I ever would have thought possible. I have discovered, much to my own surprise, that although we cannot wish or hope our losses away, we can thrive by changing how we think. We can dream new, more realistic dreams—and take greater satisfaction in attaining them. And maybe my insight and personal experience could help others who are fighting their own public and private battles.
Now, almost thirty years since Eyal first fell ill, I feel ready to share our journey. As I near retirement, I have come to understand exactly what it took to rebuild after our old life had been permanently destroyed. I see the mental and emotional challenges I encountered, the shifts I had to make, the work I still have to do. I am convinced that if I can honestly describe the elements of my personal and spiritual transformation to others, they, too, might be able to shift their own ways of thinking into helpful, healing ways.
• • •
Moses led the Israelites on a forty-year journey from slavery in Egypt to the Promised Land. When the Israelites arrived, they were physically exhausted and emotionally spent. They didn’t know what the future held. All they knew was that they were following this guy Moses, who had introduced them to an unfamiliar concept of God. Having grown up in a culture of idols—objects you could see and touch—they had a hard time accepting Moses’s notion of an intangible God, one nobody ever saw or heard. Their discomfort had become apparent earlier in the journey, when God summoned Moses up to Mount Sinai to receive the Ten Commandments inscribed on stone tablets. In Moses’s absence, the Israelites became frightened and doubting. Believing that Moses would never return, they followed Egyptian practice and fashioned an idol to worship, a golden calf. They assumed that this tangible object would protect them in times of danger.
When Moses returned, he saw what his people had created and was consumed with anger. Under his leadership, the people had already been liberated from Egypt and led safely through the Red Sea by God’s hand. If they still couldn’t believe in the one true God, what more could Moses do? He cast the Ten Commandments to the ground, shattering them. Then, pulling himself back together, he turned around, went back up the mountain, and received a second set of tablets to replace the first.
These second tablets accompanied the Israelites on their remaining trek through the desert and became a focus for religious ritual and communal life. Biblical commentators have asked: what happened to the first set of broken tablets, the shards, the shattered pieces?
The text doesn’t say, and the story is incomplete. But some scholars offer an interpretation that I like. They suggest that the shards were gathered and placed in the Ark of the Covenant alongside the second set of whole tablets—the broken and the whole together. The Israelites did not simply disregard their lack of faith. They attained a spiritual wholeness, but their imperfection always remained with them. It was by learning to live with their imperfection that they became healed and whole.
The Broken and the Whole explores the challenges we all face if we are to become content and fulfilled after sorrow and heartbreak: gathering the broken pieces and carrying them with us as we continue our journey to the Promised Land.
When I heard Eyal’s terrible prognosis, my life was shattered. But eventually, as Moses did, I got up and climbed the mountain again. Slowly and sometimes painfully, I picked up the broken pieces of my life—dreams, ambitions, relationships—and carried them with me. Today, the brokenness is who I am, but so, too, is the intact, healed life I have been able to build.
Many people doubt that joy can exist after profound disappointment. When Leah and I are out with Eyal at the supermarket, the synagogue, or the mall, people give us pitying, sorrowful glances. I can almost hear them asking, What kind of life can that family have? On one level, they are right. Day to day, Leah and I are almost entirely absorbed in Eyal’s complex physical needs, which is frustrating, scary, and exhausting. We have had to make enormous compromises.
But what people can’t see are the deeper dimensions. The Promised Land isn’t a place. It’s in our hearts. There is an inner peace that comes from doing the best we can for someone we love. There is joy in witnessing someone with challenges stretch to accomplish ordinary tasks the rest of us take for granted. After so many years of caring for Eyal, we Shermans have fully committed ourselves to creating our own happiness. It is the intangibles that allow us to say, “Life is good.”
• • •
Looking back on our journey, there was one moment when I knew we had made it. Ten years ago, we finally sold our vacation house at Elm Beach. I spent twenty years fixated on that little place in the Poconos. It represented a time when life was simpler, less complicated, less painful. Even as we parted with so many of our other dreams, I refused to give up Elm Beach. Every year, I paid the mortgage, taxes, utilities, and homeowner’s fees, clinging to the notion that a miracle would happen and that we would one day return.
After twenty years of carrying this with me, I finally acknowledged that we would never go back. And with that sudden understanding came a more important realization: we already had. I was living Elm Beach each and every day, re-creating its deeper meaning within my ordinary life. I was experiencing joy, family, and a feeling of peace and satisfaction in my daily interactions with Eyal, in our family Sabbath dinners, in milestone occasions we were able to celebrate together, in my work as a rabbi. It wasn’t Fudgsicles eaten on a hot summer day. It wasn’t long afternoons whiled away in my bathing suit on a chaise lounge. It wasn’t escaping my life. It was my life. And it was enough.