Rabbi Charles Sherman still thinks about the idyllic family vacation he spent in the Pocono Mountains just months before his son Eyal suddenly fell ill.
He remembers finding Eyal, then 4 years old, unable to stand on his own and drenched in bodily fluids. He remembers rushing to various doctors before finally landing in a pediatric intensive care unit where his son went on a ventilator to help him breathe.
Doctors discovered a lesion “the size of a golf ball intertwined in his brain stem,” and told the Shermans that he would not live much longer.
Eyal defied those expectations, but was unable to walk, talk or breathe on his own again.
Eyal is 32 now, one of five children. And Sherman, the head of a Conservative synagogue in Syracuse, N.Y., has written The Broken and the Whole, a memoir published by Simon and Schuster, about his spiritual journey in the wake of his son becoming a quadriplegic.
He will return to his native Philadelphia just before the book’s release to speak at Har Zion Temple and Congregation Adath Jeshurun on March 9 and 10.
Sherman, 68, said he was moved to write the book after hearing the same question from so many different people: How did his family manage?
Congregants at Temple Adath Yeshurun, where he has spent almost four decades as the senior rabbi, asked how he could perform his ordinary duties as a rabbi when his home resembled an “intensive care unit,” as Sherman put it. How could he maintain his faith in God?
The secret to adjusting to their radically different life, Sherman said in a phone interview, was not just “moving on,” as he had advised congregants before his own crisis, but rather accepting the brokenness.
For him, selling their family vacation home near Elm Beach, a man-made lake in the Poconos, symbolized that turning point. The house “represented a time when life was simpler, less complicated, less painful.”
The book opens with his memories there in 1985, when Eyal was still healthy.
“My wife takes out tissues to wipe Eyal’s face,” he wrote. “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.”
Eight months after that vacation, doctors discovered the lesion. Sherman and his wife, Leah, found a surgeon willing to perform a risky procedure that initially seemed successful. But then Eyal suffered a stroke and spent four months in a vegetative coma before waking up — his mind still intact even though his body no longer functioned. The reality set in that Eyal would need round-the-clock care for the rest of his life.
By the time the Shermans finally sold their vacation home 10 years ago, no longer able to make use of it, the rabbi said he had found a way to hold on to the spirit of those days.
“I was living Elm Beach each and every day, re-creating its deeper meaning within my ordinary life,” he wrote. “I was experiencing joy, family and a feeling of peace and satisfaction in my daily interactions with Eyal, in our family Sabbath dinners.”
Before Eyal’s first surgery, Rabbi Seymour Rosenbloom of Congregation Adath Jeshurun in Elkins Park traveled to New York to be with Sherman, one of his closest friends from their days together at Camp Ramah in the Berkshires. Rosenbloom described Eyal’s Bar Mitzvah, during which the congregation silently watched on a big screen as Eyal mouthed the words to the Ashrei, as “one of the most extraordinary experiences I’ve ever had.”
Not only did Eyal become a Bar Mitzvah, he also managed to graduate from high school and, after nine years of classes, to earn a fine arts degree from Syracuse University. He did so despite only being able to slightly move his chin and lips, which he used to communicate and to paint with a brush.
“He has grown from the 4-year-old Fudgsicle-eating child at Elm Beach into a smart, artistic, thoughtful, compassionate 32-year-old man,” wrote Sherman.
In addition to becoming a passionate advocate for the special needs community, Sherman said, raising a quadriplegic son has made him more empathetic and a better listener.
“If someone comes to you and says, ‘I have something in my eye and it hurts,’ it doesn’t make that person feel any better to say the person next door is dying of pancreatic cancer,” said Sherman, who grew up in Philadelphia and got married at Har Zion Temple. His daughter, Nogah Marshall, one of two rabbis among his children, is now the director of education there.
“We all have legitimate challenges and they all are worth being addressed.”
Sherman, whose son’s story was recently told on NBC’s Dateline, also has become more outspoken in sharing his frustration over how people with special needs, particularly children, are treated. Handicapped access and formal gestures help, but it’s the ordinary conversations that are most needed, he said.
“If you spoke to most families that have youngsters with special needs, they’ll tell you they have no friends, that their only real friends are their parents and siblings. I see that people will say hello to my son but then there’s a wall that comes down,” he said.
The creation of Jewish Disability Awareness Month in February and its associated events help raise the issue of inclusion, Sherman said, but “it’s not enough just to create the program. The real effort is to engage them on an ongoing basis, to look them in the eye and speak to them after the program is over and to maintain that relationship.”
Lately, Eyal is spending only about four hours each day out of bed because he is dealing with a serious wound infection. But Sherman said his caretakers “don’t allow him just to lie in bed. If you just stare at the ceiling and the four walls, you become incredibly discouraged.” He still paints periodically.
Meanwhile, Sherman, in addition to his congregational responsibilities, is immersed in battling his health insurance company over Eyal’s care. So how does he maintain his faith — a question fundamental to understanding any religious leader but particularly intriguing in Sherman’s case?
“I’m able to live in that zone of mystery,” he responded. “I’m able to live with a question mark and to say there are certain limits to my understanding.”