I'll admit that when the whole craze was going on I thought it was a bit silly. I thought, "What does pouring ice on yourself have to do with ALS? Why not just make a donation?" I figured that a monetary donation would surely do more in the end for those living with ALS than filming a video and posting it online.
But then I read One Blink At A Time by Ismail and Cheryl Tsieprati. Ismail has been living with ALS for 30 years, and in his book he talked about what an amazing thing the Ice Bucket Challenge has been for ALS research. Regardless of whether people donated or filmed a video, the fact that so many people participated really helped to spread awareness of the disease. I was aware of ALS before I read the book, but Ismail pointed out that many people weren't until the Ice Bucket Challenge happened. Many celebrities participated as well, which of course provided tons of exposure for the cause. Ismail, Cheryl, and their friends Phil and Jane even filmed their own video, which you can view here!
|Cheryl and Ismail with their friends Phil and Jane in January of 2014|
I learned a lot about ALS through reading One Blink At A Time, and I even found an answer to my earlier question about what pouring cold water on yourself had to do with ALS. Since ALS is a neurodegenerative disease, those afflicted lose control of the motor neurons in the brain. Without the use of the motor neurons, the brain can no longer control the muscles, thus leading to muscle atrophy. Ismail explains that he is always cold, even in 70 degree (Fahrenheit) weather because he does not have the muscle mass that a person without ALS has to keep him warm. So, dumping cold water on yourself for just a few minutes creates a feeling that Ismail lives with constantly.
|Ismail with his team of nurses and the Ismail's Supporters team mascot, "Lou"|
Although one might be inclined to feel bad for someone living with a degenerative disease, Ismail and Cheryl don't want anyone to feel that way. Ismail doesn't want people to feel bad for him because he says he has so much to live for. Many people with ALS don't live long after their diagnosis, but Ismail has beat the odds and has been living with the disease for 30 years! Cheryl, their doctors, and team of nurses provide excellent care for Ismail. I could never imagine what it would be like to have ALS or care for someone who does, but I'm thankful I was able to read their stories because they taught me so much.
I think it's also important to realize that people with ALS do not lose control of their minds. Their motor neurons aren't firing anymore, but that doesn't mean they aren't as intelligent as they were before their diagnosis. In one of the chapters Cheryl tells of a time when a doctor kept asking her questions about Ismail and his medical history, even though Ismail was fully capable of answering them himself. He told the doctor, "I am not stupid. You are stupid." It can be awkward or uncomfortable to be around someone in a wheelchair or otherwise, but it goes a long way to treat them as you would like to be treated, regardless of their condition.
|Cheryl and Ismail|
Cheryl and Ismail developed an "eye blink" system that allows Ismail to communicate with her and his nurses even though he has become paralyzed, hence the title of the book. He blinks once for "yes," twice for "no," and they also have a letter chart he uses to spell out words. He wrote his chapters of the book using this system. I can imagine that using this system takes a lot of dedication and patience for everyone involved. I'm thankful that Cheryl and Ismail developed it, otherwise this book may not exist otherwise!
Bottom Line: I don't want to give away too much of the book because I think everyone should read it. Ismail and Cheryl are doing great work in spreading the word about ALS, and profits from each sale of the book will be donated to ALS research. Even though they don't like to be called heroes, I think Ismail and Cheryl are just that because of all of the work they do to spread awareness about ALS, and the fact that they cherish what's important in life. Luckily they have an amazing support system, and I hope that this blog post will encourage some people to purchase the book! Not only is it a great read, but you'll help fund ALS research through your purchase as well!
*Disclaimer: This post is sponsored by Blue Point Books. Press sample received for review purposes.