By Rabbi Ben Kamin
ENCINITAS, California — Someone once told me that there is a lot of anonymous suffering in the world. The phrase haunted me as I was apprised recently of the death, in a residential fire, of a 45 year-old woman who was born with Down’s syndrome and who never spoke a word in her life. And then I learned how anonymous people, a mother, sisters, caregivers, and friends, can form a circle of love and teach us how such a victim could also have been “a blessing.”
Lisa was born in trouble—disabled, afflicted, serenely cut off from both the opportunities and the banalities of this word. Down’s syndrome occurs when an individual has a full or partial extra copy of chromosome 21; this misfortune was at the center of Lisa’s existence. The condition affects about 700 of all the babies born in the US annually. Yet each Down’s syndrome person is a creation with unique and clear personal characteristics, worthy of love and able to teach others.
Too often, people in my profession rely on clichés and liturgical formulas to respond to the anguish of a parent or the bereavement of a child. I once made the mistake of telling the grandmother of a stillborn child that “maybe it was for the best.” Older and chastened now, I still feel the scar of this inane blunder across the skin of my heart.
It turns out that people aren’t waiting for my wisdom; they are waiting for me to listen.
One of Lisa’s sisters wrote out a statement for me to read during the course of the bittersweet graveside service under a sympathetic California sun the other day. Listening to the words that I was privileged to recite, I learned a whole lot that dispelled much of the crowd’s immediate pain and informed my own sense of reason against such an illogical tragedy.
The sister asserted that Lisa inherited the “family genes”—of both “smarts” and “stubbornness.” In one simple stroke, the sister humanized a woman that we as a society would marginalize by her encumbrance and physical appearance. Gentle laughter permeated the cemetery site; Lisa was a whole soul with wondrous nuances.
Then, evoking greater-than-Talmudic insight, the sister wrote about the blessings of Lisa’s short life: “She never knew she was different, she never suffered from feeling inadequate, insecure, awkward, less than…She wouldn’t have understood hurtful words or rude looks. She was happily living in her own little world. A happy girl with a ready smile and a throaty laugh.”
Every now and then, I am reminded about how little I know and how brilliant I am not.
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Rabbi Ben Kamin is a freelance writer and author based in Encinitas, California. He may be contacted via ben.kamin@sdjewishworld.com