Obstacles are barriers that teach us how to overcome. How we challenge those obstacles defines our character and our purpose. Do we step back and never start? Or do we take the challenge head on?
ALS (Amyotrophic Lateral Sclerosis) is a progressive, neurodegenerative disease, better as Lou Gehrig’s disease. Lou Gehrig was a baseball player from 80 years ago and was the 1st famous person to contract this debilitating disease. You may have heard of ALS from the more notable ALS Ice Bucket Challenge from 2014. This actually involved pouring a bucket of ice water over a person’s head to promote awareness of the disease and encourage donations for research.
- ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
- ALS often begins with twitching and weakness in a limb or slurred speech.
- Eventually, ALS affects control of the muscles needed to move, speak, eat or breathe.
- ALS affects as many as 30,000 people in the U.S, along with 5,000 new cases reported each year.
- ALS has a higher mortality rate than Huntington’s disease and one equal to multiple sclerosis.
- The life expectancy of an ALS patient averages 2-5 years from the time of diagnosis.
- 20% of ALS patients live longer than 5 years.
- There is no cure for ALS
Over time, ALS can completely diminish all forms of motor skills from walking, talking, eating, breathing without assistance. The cognitive intellectual part of the brain is not always affected.
Remember when I told you that obstacles are barriers we learn to overcome? If you have the mental fortitude, obstacles become a passing road sign.
This has never been more apparent, than with a friend of my family that I’ve known all my life. Ismail Tsieprati has been a dear friend of my family for over half a century. He’s an inspiration to me and everyone else he has ever been in contact with. As my mom used to say, “I’ve never met a stranger.” That is Ismail to a tee. Genuine, kind-hearted, would give the shirt off his back. He was full of life, and, like everybody else, he had struggles and challenges.
At a very young age, both his parents died. He escaped the violence of his home country of Albania to find a better life in the United States. He had a passion for film and decided to go to film school at CCNY, where he met his best friend, my Uncle Phil. The two of them were thick as thieves and collaborated on low budget films while attending CCNY. Some of those short films are actually on YouTube (look up Ismail Tsieprati).
A few years later he met the love of his life, his soul mate and wife Cheryl. He never realized just the kind of role she would end up playing in their lives together. They were an inseparable pair. It wasn’t until many years later that their world would be crashing down on them.
Ismail was feeling fatigued and not quite like himself. His arm and hand were getting weak. He decided to get checked out to see what was wrong. After a series of tests, the worst possible news came to rear its ugly head. Ismail was diagnosed with ALS. There was no cure, and symptoms would progressively get worse over time; the doctor might as well have written Ismail’s death sentence. This was 1970 and not a lot was known at the time about ALS, other than the life expectancy was 2-5 years. Since there was no treatment or cure, a good quality of life could not be expected to last long.
Ismail was diagnosed 34 years ago and as the years passed, all his motor skills slowly deteriorated. Simple everyday tasks from getting a jug of milk from the fridge, to putting on a pair of socks, or going to the bathroom on his own became unimaginably challenging. He was getting weaker and weaker and it got to the point he couldn’t even talk for himself. His wife Cheryl became his caretaker. With the help of homecare nurses, she gave him around-the-clock care. She was his everything. Their love and dedication for one another wasn’t going to let this horrific disease define Ismail. They were going to make every precious moment of life matter and fight as long as possible.
As Ismail’s motor skills continued to diminish, holding a simple conversation became more challenging by the day, until finally no words came out. He could only blink. At this point, Ismail was dependent on others to do everyday tasks for him. You never realize how important communication is until you hear silence.
Cheryl and Ismail devised a way to communicate through blinks. A certain amount of blinks dictated a particular letter in the alphabet. You could probably imagine how long a simple conversation would take. As unique as this form of communication was, it seemed that Ismail and Cheryl’s bond was even stronger.
Through the tough fight they had on their hands, Ismail and Cheryl joined with The ALS Association to bring awareness and financial help to find a cure. They attended many events and at one of them, Ismail got to meet his hero, Steven Hawking, who had ALS for 55 years, the longest recorded time.
In 2013, Ismail and Cheryl wanted to share their own experiences living with ALS as a patient and caregiver. It took them 1 year to write a book called “One Blink at a Time.” It’s an inspirational story that alternates back and forth between chapters on how they both deal with the challenges of ALS. Ismail spelled out every painstaking word by blinking. This book could be considered a training manual for caregivers and patients afflicted with this disease.
Ismail and Cheryl have had the opportunity to travel in promoting this book, to not only bring awareness to ALS, but to demonstrate that it doesn’t necessarily mean that time stops. Enjoy what you have today, because tomorrow is never promised.
Two weeks before Christmas 2020, I was sifting through a handful of photos and came across one that I don’t remember having. I believe I was about 6 years old at the time and Ismail was probably in his early 30s. He looked so strong, vibrant and very happy, with what appeared as no limitations. I sent the old photo to Ismail and Cheryl, so they could reflect back on those fun-loving old days. I thought they would get a kick out of it. Unfortunately, Ismail never got a chance to see the photo, as he passed away from pneumonia the same day the photo arrived which was days before Christmas. I later heard from Cheryl, and she thanked me for the photo and will always cherish it.
ALS may have imprisoned Ismail for 50 years, but it never took his soul or spirit for life. Life is too precious to waste. He enriched everybody’s life with his dignity, love, strength and determination. He didn’t lose his battle with ALS, he learned how to coexist with it, by breaking down each obstacle that stood in his way.
Copyright © 2021 by Dan Mullins