The ALS Association

I'll Never Give Up Hope

Ismail T. Simi Valley, California

For more than 15 years I worked in film and video. Then ALS began to paralyze me and eventually take away the most precious thing to any human being—my means of communication. Speech. When the disease took away my ability to speak, I felt like I was left alone on a desert island with no human or animal life around me, surrounded by a big ocean without another piece of land in sight. When I was diagnosed, I was told that most people with ALS die within two to five years of diagnosis. But, my wife Cheryl and I made a pact to fight together, to do whatever we could to beat the odds and keep me alive, active, and productive for as long as we could. People are amazed that I am still alive today, more than 30 years after I began to experience symptoms of ALS. They are even more amazed that I still feel good and enjoy life. Twenty-three years ago, on my 20th wedding anniversary, I had a tracheotomy. I have been living at home on a ventilator ever since. I communicate by using eye blink, one of the few voluntary muscle functions ALS has not taken from me. I blink my eye to select rows of letters on a chart to spell out words. Words build into sentences. This enables me to continue to write and to express my feelings, dreams, hopes, and daily needs. Blinking out one letter at a time, I co-wrote with Cheryl a book about our 30-year journey with ALS. The book is called "Tears, Laughs, and Triumphs." People can learn more about our book and my journey with ALS by going to our website at Cheryl and I are concerned that as my ALS progresses I could one day lose my ability blink my eye. I never want to return to that desert island. I am trying to learn an eye gaze system so that I will be able to continue to be connected to the world should I no longer be able to blink, but using the eye gaze device has been challenging for me. Still, I’ll never give up hope, and I’ll never give up my dreams. People want to know how I can continue to wake up every morning, totally paralyzed and unable to talk, to eat, or to breathe on my own and still want to go on after so many years. The answer is simple. I have a lot to live for. I dream of living many more years with Cheryl, of continuing to write with her, of getting our book published and giving other people in situations like mine encouragement and hope. My biggest dream is that one day a cure for ALS will be found.

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