About the Author
Charles S. Sherman is the Senior Rabbi of Temple Adath Yeshurun, the largest synagogue in Central New York. Active in numerous faith-based and secular organizations, he has received many awards for his service and has been a respected member of his community for over forty years. He and his wife, Leah, parents of five children, live with their son Eyal in Syracuse, New York.
Excerpt. © Reprinted by permission. All rights reserved.
Broken and the Whole Normal
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 ...
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