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Seized with Kindness

Rhona Lewis

There’s nothing beautiful about epilepsy. There’s nothing beautiful about a cocoon. A cocoon isolates the developing pupa; seizures isolate the sufferer, temporarily cutting him off from the world. But eventually, the butterfly emerges …

Wednesday, January 16, 2013

butterflyLeah Katz stopped reading her book and stared off into space, her blue eyes focused on a distant speck. She looked as if she was daydreaming. But when the stopping and staring became routine, her mother took nine-year-old Leah to the doctor. After many tests, the shocking diagnosis was reached: epilepsy, with no related cause.

Thus began Leah’s lengthy, and often painful, medical saga. Medication and operations followed the diagnosis, but nothing helped to control the seizures. Even the vagus nerve stimulator, an implant placed in Leah’s left shoulder, didn’t help. At first, the seizures were partial, but over the years they became more severe.

There was little choice: Leah had to learn to live with her debilitating condition. “Leah was brave, but the real hero was her mother,” recalls Tamar, a cousin. “She was the driving force who gave Leah the confidence to do things on her own.”

“Epilepsy never stopped Leah,” her mother, who is now living inIsrael, says. “She was never afraid and insisted on going to school by herself, even though every outing was dangerous — she could have had a seizure crossing the street.” Later, when she got a job at the RCA (Rabbinical Council of America), she took the subway intoManhattan, taking care never to stand too close to the rails in case she lost consciousness.

Sadly, in over 30 percent of patients, seizures do not respond to treatment. Every few days, Leah suffers from partial seizures in which she momentarily blanks out. Generalized seizures, which result in a loss of consciousness and muscle control, affect her weekly.

“As well as dealing with the epilepsy itself and the disappointment when new medication didn’t provide the miracle cure, Leah has suffered tremendous injury from the falls. She is so familiar with broken teeth, broken bones, stitches and staples,” her sister says. And yet, “I’ve never, ever heard her complain. She always forges forward.”

At 26 Leah married Marty Katz and moved toLakewood, where they still live. Together they raised two beautiful children, born less than a year apart. Although they were offered help from social services, they refused.

 

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