Parents cope with rare disease in their own way
By Harriet P. Gross

grossforwebEverybody ages, but only small children and young teens look forward to getting older. From about 30 on, all people seem to think they’re moving along much too quickly. Milestone birthdays (that’s what I define as all the ones ending in 0, and a few big ones that end in 5, especially 75) begin as fun, then become somewhat terrifying as life goes on; show me someone who really believes the dreamer’s pronouncement that “Life begins at 40”! Finally, these occasions all end up mostly as fodder for nostalgia.
But all bets are off when a boy gets old while he’s still young; really old while he’s really young. Like Sam Berns of Foxborough, Mass., whose recent obituary rated big writeups in newspapers from coast to coast. Sam was 17 on the calendar when he died, but he was already an old, old man.
Sam was cursed with Hutchinson-Gilford syndrome, more commonly known as progeria, a name created from two Latin words loosely translating to “age forward.” He was diagnosed with this rare genetic disease of rapid, premature aging when he was only 22 months old. At his death, the teenager had all the muscle, bone, heart and vein problems, plus the baldhead, associated with the very old. And he looked at least 80 himself.
That obit rang a bell for me, a loud Jewish bell. The only other case of progeria I’d ever heard before this was the son of a rabbi who reconciled sad anger and crisis of faith over his boy’s affliction by writing the book it inspired. The title: “When Bad Things Happen to Good People.”
Of course you know the book, or at least its name. Conservative Rabbi Harold Kushner’s 1978 publication was a New York Times best-seller, and continues to be bought, read and quoted after more than three-and-a-half decades. The author’s dedication was to his very young but very old son, Aaron, who had died just one year before at only 14. “He was afraid he would be forgotten because he didn’t live long enough,” the rabbi said. “I promised him I’d tell his story.”
Suddenly, Rabbi Kushner, who had been serving Temple Israel in Natick, Mass. since 1966, had a second career, but he didn’t cut back to half-time until 1983. Finely, seven years later, when the congregation named him “Rabbi Laureate,” Kushner gave up his pulpit for full-time writing and lecturing (although he has been known to return to deliver a High Holy Days sermon or two). His amazing literary success began only after two publishers first rejected his manuscript; we can only guess how sorry they must be now!
In these two cases, we see two very different ways of parental reaction. Rabbi Kushner didn’t become an author in earnest until after his son’s death, using all the empathy and skill with words honed in the practice of his profession. Sam Berns’ parents created the nonprofit Progeria Research Foundation while their son was still living because, even though they are both doctors, they could find so little information about the disease themselves. Their work generated the HBO documentary film, “Life According to Sam,” which premiered last October in New York. Not only is it succeeding at increasing recognition and better understanding of this devastating condition, it has also generated much money for public education and medical research.
Today, while the Foundation’s work goes on, so does Rabbi Kushner’s. He can fill an ample shelf with the books he’s written since his first blockbuster, all drawing deeply on Jewish wisdom while continuing exploration of his enduring, basic theme. Take a look at Amazon’s list! My very favorite is his 2012 “The Book of Job: When Bad Things Happened to a Good Person.” Next week, I’ll be looking at what both he and a Protestant minister have to say about how that most suffering of all biblical figures has impacted their lives today.

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