Ventilator-Assisted Living©

Winter 1998, Vol. 12, No. 4

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A Happy Anniversary

Ismail Tsieprati, Simi Valley, California

My wife Cheryl and I spent Thanksgiving 1998 (November 26) in Las Vegas, celebrating our 28th wedding anniversary. We have many happy memories of Las Vegas, because we were married there. On our 25th anniversary three years ago, we renewed our marriage vows in the same chapel in which we were married.

November 26, 1998, is another important anniversary for us. It marks eight years since I was trached. (I have had ALS for more than ten years). We had been planning to go to Las Vegas to celebrate that year as well, but we never made it. I woke up the morning of the trip struggling to breathe, and we ended up spending our 20th anniversary in the intensive care unit. For several years after the tracheotomy, I continued to work as a video producer and editor, with specially adapted video editing equipment I operated with foot controls. When it was no longer possible for me to operate the editing equipment, I focused on screenwriting. I completed a 300-page action-adventure screenplay on a laptop computer with special software and an infrared eye blink switch. I am fed through a G-tube and communicate by eye blink. I also communicate amazingly well with eye movement and facial expression.

Since I received the trach and began using assisted ventilation at home, Cheryl and I have shared a challenging but happy eight years, enjoying many wonderful times, facing problems, and overcoming obstacles together. To say it has not always been easy would be an understatement. Often, life has been downright hard. We are fortunate to have licensed vocational nurses provide skilled care for me during the day. This enables Cheryl to hold a full-time job and to perform the activities necessary to run the household and coordinate my care. Cheryl provides care throughout the night and whenever a skilled nurse is unavailable.

We could not have made it without a lot of help – from our friends and family; from the many nurses who have become part of our lives and created the best quality of life possible for both of us; and from the wonderful, supportive health care team and the fantastic physicians who have been involved in my care.

Would we do it all over again? You bet we would. The ventilator has enabled us to be together these past eight years. We look forward to spending many more years, many more anniversaries and Thanksgivings, together.

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