For Rabbi Charles Sherman, everything changed one night in March 1986, when he and his wife, Leah, heard their preschooler, Eyal, cry out from his bed. Sherman went to soothe him, but it was clear something was terribly wrong. It turned out Eyal had a lesion intertwined with his brain stem. The doctors gave him at most a year to live. After a risky operation to remove the lesion, Eyal suffered a brain-stem stroke and slipped into a vegetative coma. Though he eventually woke up with his intellect and personality intact, for the rest of his life, Eyal would be unable to walk, talk, feed himself, or breathe on his own.
In his recently published book, The Broken and the Whole: Discovering Joy After Heartbreak, Sherman describes how he and his wife refused to give up on Eyal’s potential to live a full life and how Eyal has thrived despite his physical limitations. Sherman also recounts how profoundly the experience changed him, from an ambitious professional who could be “self-centered and arrogant” into someone “more accepting, tolerant, generous, and forgiving.” Above all, Sherman believes his family’s experience is instructive for all of us who suffer difficult, life-altering circumstances and struggle to live fulfilling, contented lives even after tragedy, sorrow, heartbreak, or loss.
In September 1986, when Eyal had been in his vegetative coma for a couple of months, we passed the time and encouraged his recovery by talking to him incessantly about everything: Big Kenny (his buddy from nursery school), his favorite foods (Nanny’s chicken soup and spaghetti and meatballs), sports, the weather. We sang his favorite song, the Smurfs theme song. We held photographs of his sisters and brother in front of his face. We got into bed with him and rubbed his back. But still he remained unresponsive, save the occasional involuntary tremor and an awful grinding of his molars.
Most of the medical staff who interacted with Eyal treated him at times in an impersonal way. They read the machines and paid attention to the numbers, sometimes forgetting that there was a little boy lying there. To them, Eyal was the stroke kid in the vegetative coma in room 11. We understood: the staff needed to detach emotionally so as to do their work and survive in their very difficult jobs day after day. Still, it hurt. Leah and I instinctively countered by becoming fierce advocates for Eyal. We would remind the staff that even with all his machines, Eyal was still a real kid.
I will admit, the constant effort wore on us. I felt a powerful urge to escape the hospital and feel the sun on my face, even for just a few moments. I took frequent breaks, calling home five or six times a day to talk to my parents and see how our other kids were doing. I felt overwhelmed and powerless.
There was nothing to do but push on day after day, attending to our son and hoping he would wake up. One day, a woman whom I had not seen before entered the PICU. She was in her midfifties but seemed older. She was very proper, wearing a blue cardigan, a plaid skirt, and sensible black flat shoes. “Good morning,” she said to Leah and me upon entering Eyal’s cubicle. “I’m Mrs. Kravitz. I’m from the New York City school system. I’m the teacher assigned to NYU pediatric patients. School begins today.”
Evidently the New York Board of Education was required to provide instruction to youngsters in a hospital environment, irrespective of the child’s physical condition and intellectual capacity. This was not optional; it was a legislative mandate.
Mrs. Kravitz held a clipboard bearing Eyal’s name and relevant information. Over her other shoulder hung a large canvas bag full of textbooks, workbooks, arts and crafts materials, administrative paperwork, and her lunch. Leah gazed sadly at the canvas bag, the markers and crayons. Eyal had always loved to draw.
“Eyal is in a coma,” I told Mrs. Kravitz. “I know that,” she said kindly as she continued over to Eyal’s bed. She pulled up a chair close to his head, took out a large storybook with lots of pictures, and introduced herself. “Hi, Eyal, I’m Mrs. Kravitz, your teacher. Let’s get started.”
In the ensuing days, Mrs. Kravitz came every morning at ten and stayed for an hour. She was incredibly focused. Nothing deterred her. If an alarm went off signaling that Eyal’s feeding tube had occluded, she knew how to silence it and reengage the feeding. She continued teaching even when the nurse entered to take Eyal’s vitals, turn him side to side to minimize skin breakdowns, or suction out his breathing tube.
One day, perhaps a week or two after she had begun lessons, Mrs. Kravitz pulled from her canvas bag a timeworn Indian drum. After providing Eyal a brief explanation, she demonstrated how to use the drum, hitting it with the palm of her hand over and over again, for several minutes, in close proximity to Eyal’s ear. Several nurses peeked in to see what the noise was all about. I watched this interchange with admiration. A lot of folks had been ready to give up on Eyal, but not Mrs. Kravitz. She could have just as easily clocked in, sat there, and read the New York Times. Instead, she demonstrated fierce determination, loyalty, creativity, and passion – a respect for each person, regardless of circumstance or condition. She taught me a simple but powerful lesson: that each one of us, irrespective of where we are in life, who we are, and what we are capable of, deserves validation and attention. We deserve to be treated like human beings – people who count.
Before Eyal got sick, I had visited lots of sick people, some unresponsive or in a condition similar to Eyal’s, and I had always felt uncomfortable. I engaged members of the family who were keeping vigil, but I never spoke directly to the person lying in the bed, convinced that it was an exercise in futility. I had accepted our society’s notion that in the absence of a “quality of life,” there is no life. I never pondered the basic question, Who gets to define “quality of life”? During my visits to the sick, I was in effect making a judgment call, pronouncing the person already gone.
But after Eyal got sick, I realized the gravity of my error. Who are we to determine that a person lying in a hospital bed doesn’t hear a melody or feel a loving touch? Who are we to say that such a person is not comforted by the presence of family and friends or the words of a familiar prayer? I have seen many people interact with Eyal over the years, and I have learned that it is never an exercise in futility to talk with, sing to, pray with, or physically touch a person who is sick or compromised. Today when I visit someone in the hospital, I approach the bedside almost immediately and engage that person in conversation. It doesn’t matter if someone says, “Oh, she doesn’t even know you’re here.” I will not be deterred. I sing and chant familiar prayers that even the most marginal Jew would remember from childhood. I talk to the person. I share with them common memories. I tell a little story. I let them know they are not alone.
Initially, we schooled Eyal at home, bringing in a teacher for an hour a day. Leah, who had trained as a teacher, read to Eyal, taught him math, and enlarged the newspaper so he could start reading part of it. In the late 1980s, we started sending Eyal to the local elementary school. At that time, society was in the early phases of changing the way it handled kids with physical and developmental challenges, taking them out of institutions and integrating them with other children. Our local school had been mainstreaming children with autism, and administrators were willing to consider taking Eyal. After many meetings, we came up with a plan. Eyal would go to the local elementary school for a few hours each day accompanied by his nurse and Leah, who could facilitate communication. The school district would provide an aide, and a teacher would continue to make at-home visits to supplement Eyal’s education. The district would also take steps like instructing the other kids about who Eyal was and why he was there and providing a private room where Eyal could go to be suctioned and have his bags of waste disposed of.
From the beginning, Eyal loved school, soaking up knowledge and developing into an inquisitive, insightful, funny, and respectful child. The school environment became his community, his social network, just about everything. And yet, our experience wasn’t entirely positive. We had to push hard for Eyal to receive respectful treatment from people who for one reason or another couldn’t see him as a unique individual, a kid deserving of respect like any other. In junior high school, the gym teacher wanted Eyal to stay off to the side during floor hockey games, concerned that he’d be injured. Leah would have none of that. She purchased a hockey stick for him, and the next day he sat in his chair, the stick attached, and moved up and down the gym floor, playing with the nurse. He wasn’t part of the normal gym class, but at least he was included in some way. His personhood was recognized.
Perhaps because we fought so hard, Eyal has come to believe in himself, stay active, and develop a strong sense of individuality, leading others to notice that individuality, too. In middle school, a hall monitor whom he passed every day going into school saw him in the school chorus singing away (he would mouth the words, although no sound could come out). The next day she said, “Eyal, I didn’t know you could sing.” In his college Hebrew class, the teacher went around the room asking the students in Hebrew where they lived. Eyal answered, “Rehov Sumsum” (Sesame Street), surprising everyone with his sense of humor. Most people don’t realize that Eyal knows what is happening in the world; in fact, he keeps up with current events and world news, knows a lot about sports, and even follows celebrities, thanks to his sister Orah, who reads Us Weekly and People magazine with him.
Over the years, having witnessed Eyal’s growth firsthand, I have become an outspoken advocate for people with special needs. My chief task, I realize, is helping to broaden others’ understanding of personhood. I remember a local city councilor who argued outrageously that we shouldn’t spend money educating kids like Eyal, since they would never be productive members of society. At a public meeting, I pointed out that I’ve watched my son do things no one else could. It may have taken him a year and a half to move his thumb two centimeters, but that was just as important an accomplishment to him as achieving a PhD in nuclear physics may have been to someone else. It demonstrated every bit as much courage, determination, and strength. We are all individuals pursuing our own struggles as human beings, and we all need to be allowed and encouraged to become everything we were put on this planet to be.