Jewish U.C. Berkeley activist working to stamp out Crohn’s diseaseby
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In a pivotal scene of 1994’s “The Shawshank Redemption,” prisoner Andy Dufresne tells his buddy Red that there are only two paths in life: “Get busy living, or get busy dying.”
Gideon Sofer knows this all too well, and he didn’t need a wrongful conviction and two decades in prison to figure it out. Back in 2003, the 22-year-old Jewish U.C. Berkeley student’s only prison was his own body. Immobilized and near death as a result of Crohn’s disease, Sofer learned to love life — and vowed to fight to get his back.
“Some people come to the realization in their 80s that life doesn’t go on forever. I think, in many ways, that realization is an asset,” he said while sitting among his fellow students at U.C.‘s International House Café.
“It’s not a gift someone would ever wish for. But I think it’s a gift I have tried to make the most of. Spiritually, it was one of the most difficult times. My reflection on this with HaShem wasn’t so much ‘Why me?’ but ‘What do you want from me?’”
Sofer stands 5-foot-6 and weighs just a shade over 100 pounds (the jogging suit he wears makes him look like any other Cal student, in addition to hiding just how thin he really is) and, in fact, is tickled any day he steps on the scale and is rewarded with a three-digit readout.
The New Jersey native has had nearly half of his intestines removed. Some days he just doesn’t feel like eating (“It’s the antithesis of the obesity epidemic”). He celebrated his 21st birthday with a night of sobriety and, in fact, has never been able to take a drink. Any day where he has enough energy to get out of bed is a good one.
Crohn’s is an inflammatory disease of the bowels, which can cause breakage and even perforations in the intestines. Along with related diseases such as colitis, it is commonly referred to as Inflammatory Bowel Disease and nearly 1.5 million Americans suffer from it, including a disproportionate number of Ashkenazi Jews. And the fact that this paragraph is likely the most you’ve ever read about IBD is Sofer’s raison d’être.
A decade ago this month, Sofer was diagnosed with IBD; among other symptoms, his weight had dropped from 85 pounds to 45. Drinking a cup of water felt like imbibing shards of glass. He soon became too sick to attend Hebrew school or, for many weeks at a time, any school at all. One section of his intestine was discovered to be as narrow as a pinhole. He looked to his doctors for answers, but there weren’t any.
“As a young kid, you think doctors are like the encyclopedia, they’re supposed to have all the answers. And they knew nothing! As a little boy I’d go to sleep shattered, not because I knew so little but because the medical community [did],’ recalls Sofer, who created the Web site http://www.ibdcure.org.
“I put two and two together and asked, ‘What does that mean about my future?’”
Since he was a child, Sofer has been pushing for more publicity (and funding) for IBD research. Plenty of research is needed — doctors have not yet figured out even what causes the disease. And Sofer knows that publicity equals dollars, and dollars are in demand: More Americans suffer from IBD than from Parkinson’s disease, yet the latter receives four times the funding.
When Sofer was hospitalized, he noticed breast cancer awareness stamps for the first time. A lifelong stamp collector, he decided that an IBD stamp would be the best way to publicize the plight of those afflicted to the American people. After years of lobbying and thanks to the efforts of New Jersey’s Make-a-Wish Foundation, he met with Postmaster General John Potter in late May.
On Saturday, Oct. 21 the Afro-Semitic Experience played a benefit concert at the Berkeley Hillel for Sofer’s stamp drive and Sofer handed out hundreds of postcards emblazoned with his proposed IBD stamp, which well-wishers can mail to the U.S. Postal Services’ stamp advisory committee (the stamp was created by Megan Leigh Dorko, a professional designer who heard Sofer interviewed on NPR).
It takes years to get a stamp into circulation — if it’s chosen at all — but Sofer, is optimistic. And he’s happy, too. He’s running again (hence the jogging suit) only a few years after requiring an attendant to get out of bed and head to the restroom. After graduating from high school, he was virtually bedridden for three years — and for a guy like Sofer who’s happy only if he’s insanely busy, those three years of mental and physical idleness were torture.
“I really think my journey has brought me closer to God. And despite having hundreds of people come up to me and say ‘You’ve been dealt a bad hand’ or ‘Wow, that really sucks,’ I refuse to see my life that way. I don’t see myself as unfortunate,” says Sofer, who hopes to become a lawyer and fight for the rights of the disabled.
“We’re all dealt challenges in life. It’s not a matter of better or worse. It’s just different. I was dealt several blows of an enormous magnitude, I’m not going to lie to you about that. But I’m grateful for where I’ve been able to go in life and who I’ve been able to meet.”
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