February 5, 1998
Parashat Be-Shelach(Exodus 13:17-17:16)
Here's a story that will sadden andamaze you. It's Jean Dominique Bauby's story. In 1995, he was theeditor-in-chief of Elle magazine in France, the father of two youngchildren, a 43-year-old man known and loved for his wit, his styleand his passion for life. Until he suffered a rare form of strokethat left him with something called "locked-in syndrome," a conditionin which the patient is paralyzed from head to toe, with his mindcompletely intact — imprisoned in his own body, unable tospeak or move.
In Bauby's case, there was one tiny exception tohis being "locked-in." He could blink his left eyelid. So, by havingan assistant point to one letter at a time as he blinked yes or no,Bauby wrote a book called "The Diving Bell and The Butterfly"; it's abook about being locked in.
"Bath time: My weekly sponge bath plunges me intodistress — nostalgic for the immersions that were the joy ofmy previous life. Armed with a cup of tea or a Scotch, a good book ora pile of newspapers, I would soak for hours, maneuvering the tapswith my toes. Rarely do I feel my condition so cruelly as when I amrecalling such pleasures.
"Meal time: By means of a tube threaded into mystomach, two or three bags of a brownish fluid provide my dailycaloric needs. For pleasure, I imagine a simple, soft-boiled egg withfingers of toast and lightly salted butter. The yolk flows warmlyover my tongue and down my throat. Oh, to taste the hard sausagetrussed in netting, suspended permanently from the ceiling of mymind.
"Father's Day: Today is Father's Day. Until mystroke, we had felt no need to fit this made-up holiday into ouremotional calendar. But today we spend the whole of it together,affirming that even a rough sketch, a shadow, a tiny fragment of adad, is still a dad. I am torn between joy at seeing them living,moving, laughing for a few hours, and fear that the sight of all thissuffering is not ideal entertainment for a boy of 10 and his8-year-old sister.
"Grief surges over me. His face not two feet frommine, my son, Theophile, sits patiently, waiting — and I, hisfather, have lost the simple right to ruffle his bristly hair, clasphis downy neck, hug his small, lithe, warm body tight against me.There are no words to express it. My condition is monstrous.Suddenly, I can take no more. Tears well and my throat emits a hoarserattle that startles Theophile. 'Don't be scared, little man. I loveyou.'"
This week, the Torah reminds of something thatBauby knew all too well. Although God provides manna each morning inthe desert so that the people can gather and bake it into cakes thattaste "like sweet cream," the manna can't be stored overnight. Ifwhatever fell wasn't eaten that day, as the Torah not-so-gentlystates, "it became infested with maggots and it stank." Manna isreally a lesson to teach us that certain things cannot be deferred,or stored up for later use — certain things, like life.
What Bauby longs for is what most of us take forgranted — each day's manna; an escape from the prison ofapathy; an invitation to find meaning, have some fun, sink into thesimple pleasure of a soak in the tub, of good bread and wine,Shabbat, Torah and prayer, of keeping our children and each otherwarm with our arms, our kisses and our souls. We either savor thesweetness of each day, or it spoils. It's pretty simple really— life, like manna, doesn't keep.
Steven Z. Leder is a rabbi at Wilshire Boulevard Temple.
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