Rites Of Triumph (part 1)

First came the dogs. At 5, two years after he was diagnosed with a deadly brain tumor, Spenser Scharfman had developed a love for animals, and he told his parents he wanted a pet. “When you’re 7, we’ll get you a dog,” they told him. “We had no idea what that meant,” Stewart Scharfman says — they didn’t think Spenser would survive two more years.
He did; and he got Oliver, a frisky Carin Terrier. Oliver died, hit by a car, and was replaced by Jessie, a Wheaton Terrier, and Mocha, a Pekinese, whom Spenser would care for in the family’s Great Neck, L.I., home until his last surgery left him in a wheelchair, virtually paralyzed.
Then came camp.
Last year, at 11, Spenser decided he wanted to attend Camp Simcha, a Jewish-run, sleepaway summer program in Glen Spey, N.Y., for children with cancer and other catastrophic illness. No way, thought his father. “Spenser had never stayed away from us.” Spenser went to camp. He rode a motorcycle and went white river rafting.
And now, the bar mitzvah.
Adam’s older brother, Adam, became bar mitzvah three years ago. “He inspired me,” Spenser says. “Could I have one too?” he asked his parents.
Again, Stewart and Joy were skeptical.
But Spenser insisted.
So last Sunday, a day before his 13th birthday, in the packed sanctuary of Temple Israel, Spenser sat in his wheelchair on the bima and chanted the Rosh Chodesh Torah reading, becoming a son of the commandments.
“I want to have a fun day,” he told his parents on the way to shul — “no crying.”
Dressed in a formal black suit with a loosely fitted gray tie, he slowly read his D’var Torah speech, in which he stated “This is my 10th anniversary since my parents found out I had a brain tumor.” And, held up by his relatives, he danced with his mother at the reception after services.
“I’ve never seen anything like this,” Rabbi Mordecai Waxman, spiritual leader of Temple Israel, told Spenser and the congregation. “I think it’s one of the greatest Jewish statements I’ve ever seen — a great statement of triumph over adversity.”
For the synagogue, Spenser’s bar mitzvah will serve as an example of perseverance, of the importance of Jewish education, said Rabbi Marim Charry, who led the abbreviated Shacharit service.
For Spenser, who has undergone a decade of chemotherapy, radiation treatments and surgeries, Sunday was simply the latest milestone.
Spenser was named for a young Spencer whom the Scharfmans had admired. The middle S came from “Spenser for Hire,” the 1980s detective show starring Robert Urich. Urich, ironically, is also a cancer survivor, diagnosed with a disease of the soft tissue in 1996.
Spenser “was born healthy,” Stewart, a physical therapist says. “We didn’t have any idea” something was wrong with him “until he was 2.” Then a head tilt and other clues indicated a problem. Eventually, a brain tumor was discovered; it was a largely inoperable tumor, which spread like tentacles.
The prognosis, says Joy, a nurse, was “one year.”
“And not a good year,” Stewart adds. “It would be a terrible year.”
But Spenser fooled the doctors. “They say they’re learning from him,” Joy says. The doctors have stopped making longevity predictions — and the Scharfmans have stopped asking.
Though physically limited through the years, Spenser went to school, learned to play the drums, and became an animal lover, informally apprenticing with a local veterinarian.
At home, Jessie and Mocha guard him protectively, crouching next to his wheelchair. “He always makes sure we feed the dogs,” Stewart says. On the streets, dogs come up and lick Spenser’s face. “It’s uncanny. They sense something,” Stewart says.
“Spenser is one of the purest souls I’ve ever met,” says Ronit Arieh, a religious school teacher at Temple Israel and Spenser’s personal tutor for three years. “He’s very spiritual. He has such faith in God.”
Twice a week Arieh would come to the Scharfmans’ home, even when Spenser was feeling weak. “He always wanted me to come. He took it so seriously.” Spenser’s medical treatments affected his ability to concentrate. Arieh would repeat the lessons over and over. “We would talk about God,” she says. “We would talk about all the Jewish concepts.”
As Spenser learned, he brought the lessons into the Scharfmans’ kosher home. They started doing Havdalah Saturday night. They made more blessings over the food they ate. They placed a big pushke on a kitchen counter.
“He educated us,” Stewart says. He brought us around. We became more observant because of him.”
Last year the METNY Region of the United Synagogue of Conservative Judaism established an Akiba Award, recognizing a student who is “exceptional in any area of achievement, service or attitude,” and made Spenser its first recipient “because of his great love of Torah.”
In recent years Spenser used a walker to get around. Surgery last September, which removed 40 percent of his remaining tumor as well as part of his upper spine, took away most of the strength in his limbs. He has occasional spasms; a feeding tube was inserted in his stomach. “His swallowing is affected; his breathing is affected,” Joy says.
“It’s painful for him to speak loudly,” says Arieh.
Thoughts come slowly, as Spenser — in a tilt-in, manual wheelchair with neck support, safety belt and acrylic arm platform — enunciates each word in a soft gurgle.
Why a bar mitzvah? “I always wanted to have it,” Spenser says. It means “becoming a man.”
No thoughts about giving up? “No.”
A weekday service, with the necessary Rosh Chodesh Torah reading, was arranged instead of the traditional Shabbat bar mitzvah, Stewart says, because “We thought it would be easier for Spenser to have a service that could be tailor made.” Many prayers in the preliminary Pesukei D’zimra service were omitted.
Stewart wheeled his son onto the bima, up a 6-foot aluminum ramp kept in the family van, putting newly bought tallit and tefillin and a white satin kipa on Spenser.
Cantor Raphael Frieder called the aliyahs. Spenser’s grandparents, his brother, and his parents.
Then the bar mitzvah boy, Yeshia Oren ben Shmuel Ya’ar.
With a small microphone clipped at his neck, surrounded by family, he read from a small Torah scroll supported by two uncles. Brother Adam, yad in hand, pointed to each word.
The racially mixed congregation, which included several children and adults in wheelchairs, nearly filled the first floor of the sanctuary with more then 300 people. Many came without official invitations.
“It became an event for the congregation,” Rabbi Charry says.
The pews were silent as Spenser read, strongly and clearly. Many worshipers wiped away tears.
Then Spenser read his speech, which he had written with his parents’ and Rabbi Charry’s help. The Rosh Chodesh parsha, he said, was about biblical animal sacrifices.
“Today,” Spenser said, “we no longer bring sacrifices of this sort, however, my family and I do make a handful of sacrifices.”
He continued slowly. “I make sacrifices every day by waiting and being patient for people to help me since I have many disabilities. I do, however, have many abilities, and working hard to prepare for my bar mitzvah is one of them.”
He thanked his “family, doctors, nurses, and friends who have helped me reach this important day.”
“A bar mitzvah,” he said, “is important to me because it is another step to becoming a teenager and continuing to meet the challenges and overcome the obstacles in life.”
Rabbi Waxman walked over and hugged Spenser.
“He’s a champion,” the rabbi told the congregation. “He is a champion in spirit.
“Spenser,” Rabbi Waxman said, “we love you, we appreciate and we applaud you. So let’s applaud him.”
The whole congregation rose as one.
From Temple President Steven Markowitz came gifts on behalf of the congregation — a kiddush cup, siddur and pushke.
Spenser returned home, one goal accomplished.
Some goals remain.
Spenser had a doctor’s appointment this week. He hoped the doctor would remove his breathing tube and feeding tube. “I want to be able to eat again.”
High school starts in a few weeks. Spenser keeps praying to God, “to get better.”
And he has one, long-term goal.
“I want to become a veterinarian.”