‘Yes, you can bench-press me’: Remembering a 50-pound Jewish disabilities advocate who matched fierce with funny
“I want future generations to benefit from this,” Sheryl Grossman said of her work as an advocate for disability rights.
By Benyamin Cohen March 30, 2022
Sheryl Grossman once told me that her goal was to become the oldest person with Bloom’s Syndrome, a genetic disorder so rare that doctors have recorded fewer than 400 cases since it was named in 1954. One in four of those afflicted with the disease, like my friend Sheryl, are Ashkenazi Jews; most died before age 45. Sheryl died Monday at 46.
I first met Sheryl a decade ago when I moved to Morgantown, West Virginia. I was pleasantly surprised to find a smattering of Jews amidst the hills of Appalachia, let alone someone as distinctive – and distinguished – as Sheryl.
At 4-foot-3 and weighing less than 50 pounds, her elfin appearance could tip others off their axes. She seemed to like it that way – it made for an easy opening to educate people about her disease and her mission to advance disability rights. She may have been small, but she was a force.
The disease is named for David Bloom, a New York dermatologist who was the first to piece it together. He found a genetic hiccup that caused short stature, immune-system deficiencies leading to respiratory and bronchial infections, patchy skin discolorations, diabetes, sterility, and — perhaps in a cruel cosmic case of adding insult to injury — an extraordinarily high risk of developing cancer. Sheryl herself beat back cancer 12 times.
Her parents waited until she was 14 to tell her she had Bloom’s. “In retrospect, that was not a good time to tell me,” she reflected in one of our many conversations. “I was a rebellious teen who was already angry with the world.”
Born in Chicago, Sheryl was taunted in high school. She remembered being thrown in a trash can and tossed over a volleyball net. And yet, somehow, she enjoyed school. Hey, she thought, at least the cool kids were paying attention to her. “I loved the illusion that I was with the ‘in’ crowd,” she once told me. Listing the humiliations she suffered, she added with a smile: “Yes, you can bench-press me.”
In college, a professor inspired Sheryl to reframe her life. She channeled her snarky attitude and boundless energy into standing up for the rights of the disabled. She earned a master’s degree in social work from Washington University in St. Louis. She started looking into advocacy work. “I no longer wanted to wallow in self pity,” she said.
She was driven to find other people like her, people belonging to the exclusive Bloom’s club. “It was a weird experience,” she said of the first time she met someone else with the syndrome. “It was like finding a twin you never knew you had.”
But meeting a few of her fellow Bloomies, as she called them, was not enough. She wanted to find them all. So she launched Blooms Connect, an organization that became the go-to international source for all things related to the disorder.
Between hospital stays to treat her worsening medical condition, Sheryl went to Washington to lobby for disability rights. She was a board member of Yad Hachazakah, the Jewish Disability Empowerment Center, and was outspoken last year about ensuring the COVID-19 vaccine was equally available for people with disabilities.
“My mouth is my largest organ,” she’d say, “and I’m never afraid to use it.”
The author with Sheryl Grossman in 2019.
Most doctors have never treated anyone with Bloom’s and Sheryl thought it was her duty to educate them about the inner workings of the disease.
“I don’t want to die with this knowledge,” she once told me over hot chocolate at the Blue Moose Cafe in downtown Morgantown, across the street from where she worked at a nonprofit helping others with disabilities. “I want future generations to benefit from this. I need to do what I can do so that they have chances that I never had.”
We would often travel together the 75 miles to Pittsburgh to buy meat from the kosher butcher in the city’s historic Squirrel Hill neighborhood. She offered to drive the first time and since I was new to the area, I agreed.
We climbed – she more than I – into her 2006 Toyota Scion. You’d think it would be tricked out with special features to accommodate her small stature. Instead, there was a pile of old pillows on the driver’s seat that helped her see over the steering wheel and a scary-looking Rube Goldberg contraption that somehow allowed her to control the pedals. It felt like a bit risky for a brisket, so I always offered to drive after that.
My wife and I tried, whenever possible, to make life a little easier for Sheryl: we’d offer to pick up groceries or give her a ride to the megillah reading at the local Chabad house.
With all of her ailments, it was difficult for Sheryl, who did not drive on Shabbat, to come to our home for Friday night dinner. So she’d occasionally stay over for all of Shabbat – what a joy to have an uninterrupted 25 hours with this funny, resilient, optimistic David taking on a world of Goliaths.
Sheryl once told me that she didn’t know “how many todays she had left.” It turns out, it was not nearly enough.
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