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Finding Color in the Darkness

Shira Yehudit Djalilmand

This is the most difficult article I’ve ever written. When my friend Devorah Alexander became sick with Lou Gehrig’s disease (also known as ALS or motor neuron disease), my instinctive reaction was to fight back the only way a writer knows — by telling the world about it. Few have heard of this disease, which causes the muscles to waste away, leaving the victim in the nightmare of an active mind trapped in a useless body.

Wednesday, May 22, 2013

paintsI don’t remember when I first met Devorah. Maybe she was acting in a Purim play, maybe it was in the Tzfat Candles shop where she worked, or maybe at a shiur. What I do remember is the first thing that struck me — her warmth. Everything about Devorah radiates a genuine inner warmth, from her smiling eyes to her soft, lilting Irish accent.

Originally fromDublin,Ireland, Devorah moved to Tzfat over 20 years ago after finding her way back to observant Judaism. The last 12 years she’s shared with her second husband Binyamin, originally fromAustralia. Until the disease attacked her, she worked at Tzfat Candles, creating designer candles, as well as producing her distinctive colorful paintings. With her daughter and grandchildren living nearby, many close friends, and guests from around the globe, Devorah’s life was full.

Then her world fell apart. When I first heard Devorah was sick, I didn’t know the details. I hadn’t seen her for a while, and the news of the diagnosis came like a bolt out of the blue.

I put off visiting her. I told myself I was too busy, or perhaps I would be intruding. But the brutal truth is that I just didn’t want to see what damage the disease was inflicting. And so time went by. I still wanted to write an article, but by now Devorah’s symptoms had worsened. To my shock, I heard that she could no longer speak. I had neglected it too long. How could I write the article without hearing her voice — her own, distinctive, warm voice?

And then, to my surprise, she sent me an e-mail, in her usual chatty manner:

Shira Yehudit, shalom! I was just thinking of you, and wondering where and how you are? I don’t know if you know that I have an illness called MND [motor neuron disease] or ALS [amyotrophic lateral sclerosis] …

 

I realized that although she could no longer speak, Devorah’s finger muscles still worked enough for her to type on the computer. I could no longer hear her voice, but I could read it. I e-mailed her back and suggested interviewing her about her experience via e-mail questions and answers. Her reply popped into my inbox just a few minutes later:

 

Dearest Shira Yehudit! You are a brave woman! I think it’s an excellent idea to inform readers of Mishpacha about MND. I would love to give it a try. E-mail questions and answers sounds good, but you would have to give me time, as my hands don’t work properly.

 

Devorah was wrong. She is the brave woman — not I.

 

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