Challenging ALS One Blink at a Timesam
If there was ever a disease that could strip a human being of all his or her strength, challenge their courage, and threaten to push them into the worst depression imaginable, it is ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, named after the former New York Yankees’ star who died of it in 1941).
ALS kills a human being by destroying nerve cells that allow the brain to control muscle movement. Eventually, the person becomes paralyzed. The muscles of the diaphragm stop working, causing respiratory failure. Once diagnosed, a person is expected to live two to five years.
In their new book One Blink at a Time, Ismail and Cheryl Tsieprati share how they teamed up and overcame each and every challenge ALS placed before them.
Their remarkable achievement is an upbeat, inspiring story of courage and optimism in which Ismail and Cheryl recount in alternating chapters how they each dealt with the formidable challenges of living with ALS for the past 30 years. Ismail and Cheryl’s distinctive voices add to the breathtaking impact of this exceptional book.
“Although ALS has stolen Ismail’s ability to move, speak, even to breathe on his own, it has not taken away his determination to live a happy and productive life,” Cheryl says. “Ismail spelled out his chapters using eye blinks, letter by letter, word by word.”
“People are amazed that I have survived ALS for thirty years and still feel good and enjoy life,” Ismail writes in the book. “They want to know how I’ve done it. They ask me how I can continue to wake up every morning, totally paralyzed and unable to talk or to eat, and still want to go on after so many years. The answer is simple. I have a lot to live for.”
Cheryl says people frequently ask her how she has survived being a caregiver for her husband for thirty years. “I have made it,” she answers, “because Ismail, despite his illness, the pain he suffers every day, and his physical limitations, continues to enjoy life and be upbeat, good-natured, and loving.” She adds “We are one another’s rock, and together we’ll keep going.”
Ismail said he hopes One Blink at a Time will give other people in situations like his encouragement and hope.
In addition to Ismail and Cheryl’s inspiring story, the book contains practical advice from training caregivers to preparing for emergencies to surviving the hospital. Also included is an extensive glossary and helpful resources.
One of the most difficult challenges facing Ismail and Cheryl is the need to build, train and maintain a reliable and effective nursing team. Over the years, the couple has gone through dozens of nurses. In the past, Ismail had some who had poor attitudes or were not well trained to handle his needs.
“New nurses can be scary,” Ismail says, “so we developed a list of expectations which we now give to every new nurse, along with other information, on their first day of orientation.”
Here is the list:
1. Ability to communicate with Ismail. This involves learning to use the communication chart and spelling with Ismail via eye blink. It also involves getting to know and accurately interpret his other nonverbal communication methods (i.e., eye gaze, facial expressions).
2. Knowledge of the ventilator. This involves being completely comfortable with Ismail’s ventilator model, knowing what the appropriate settings are and which ones can be adjusted by us. It also involves knowing how to set up and clean the circuitry. Most important, it involves knowing how to troubleshoot a problem and what to do in case of an emergency.
3. Ability to suction Ismail correctly and safely. This involves becoming skilled in the special suctioning technique we use for Ismail.
4. Ability to transfer Ismail unassisted to and from the bed and the commode.
5. Good judgment and common sense, including acting calmly and effectively under pressure and in emergencies.
“I am grateful that most of them have been taking care of me for many years and understand my needs very well,” Ismail writes. “They also care about me as a person as well as a patient and do everything they can to make me happy. I am very lucky to have such wonderful nurses. I feel safe with them and enjoy being with them. I consider them my friends.”
Ismail communicates by blinking his eye with the help of a spelling chart that consists of numbered rows of letters and a row of numbers. Cheryl or a nurse calls out the numbers of each row, and Ismail blinks when he hears the number of the row he wants. He blinks again when he hears the letter he needs.
“Letter by letter, I spell out words,” he says. “Words build into sentences. With these words and sentences I can express my feelings, dreams, hopes, and daily needs.”
“As helpful as Ismail’s eye blink has been to us over the years,” Cheryl writes, “we know there may come a time when Ismail could lose his ability to reliably blink his eye and will no longer be able to use this method of communication. So we are constantly on the lookout for new technologies.”
One Blink at a Time was written over a two-year period, 2013 to 2014. Ismail writes:
“When I get tired, it becomes harder for me to blink my eye. Sometimes, Cheryl and I had to stop for a while because she could no longer see my weak eye blinks. Although it’s sometimes tiring for me to blink my eye, I know that Cheryl and I will find new ways for me to continue to communicate and work on books and other projects. I’ll never give up my fight.”
About the Authors
Ismail Tsieprati is a former film and video editor, producer, director, and writer with more than 25 years of experience in the film and video industry. He has written many screenplays and has extensive educational film credits. Ismail was presented with a special citation from the City of Los Angeles, Department of Building and Safety, for playing an instrumental role in the initial production of the Department’s training video series. In 2003, Ismail was presented with the ALS March of Faces Vice President’s ALS Awareness and Advocacy Award for his outstanding achievements in raising public awareness of ALS. Although he is totally paralyzed and no longer able to speak or write, Ismail communicates by blinking his eyes to spell out words and sentences. Using this method, he writes blog posts for social media and collaborates with Cheryl on musical theatre and other writing projects. He wrote chapters for this book by spelling out each word one blink at a time.
Cheryl Tsieprati worked in the health care industry for nearly 40 years. She has more than 25 years of experience in training consulting, instructional design, writing, and editing. As a freelance journalist, she received a first place award from the Associated Press, Western Region for her work on a newspaper series Retailing in the ’80s. Cheryl also received an award for a comprehensive seminar she developed and facilitated for individuals with neuromuscular diseases and their family caregivers. She enjoys working on creative projects with Ismail, her husband of 44 years, being an ALS advocate, and collaborating on new musicals as book writer or lyricist.
They live in Simi Valley, California.
This remarkable and unique story of Ismail and Cheryl is one of great courage, resilience and hope. We all can admire Ismail’s nearly-unbelievable good spirits, optimism and determination to adapt to ALS (Amyotrophic Lateral Sclerosis), and to maintain an excellent quality of life.
– W. King Engel, M.D., Director, USC Neuromuscular Center, Good Samaritan Hospital, Los Angeles
What an amazing and inspiring journey! Ismail and Cheryl have written a story of love and devotion, of hardships and triumphs. My first year medical students need to read this book.
– M. Rudolph Brody, M.D., Associate Clinical Professor of Pediatrics, Keck USC School of Medicine