Flashback: Living through ALS
I wrote this article a number of years ago as my father was wasting away from ALS. Given all the attention on this disease recently—as well as the ALS Ice Bucket Challenges appearing on Facebook and other social networking sites—I thought it might be nice to re-post this. Unfortunately, my father lost his battle and passed away in 2008—roughly a year after my son was born. It is too late to help my dad, but I hope we can find a way to save the lives of other ALS patients before they suffer the same fate. I love and miss you, Dad. This is for you.
Amyotrophic lateral sclerosis (ALS)—also known as Lou Gehrig’s disease—is a degenerative motor neuron disorder that generally affects the muscles, but later spreads into almost every system in the body. Those unfortunate enough to develop the disease experience “rapidly progressive weakness, muscle atrophy and fasciculations, muscle spasticity, difficulty speaking, difficulty swallowing and decline in breathing ability” (Wikipedia). And the mortality rate for ALS is 100%. There is no cure and the outlook is always grim.
I know this because my father passed away in 2008 from ALS.
Although I’ve come to accept the fact that he is gone, I often find myself wondering how someone like my father could develop such a horrible disease in the first place. And even though it isn’t genetic—he was the first in our family to suffer from ALS—I worry that eventually, I could be next. Of course, my father and I were almost polar opposites in many respects, so I am optimistic and feel confident something else will likely get me.
This fact doesn’t make me feel much better, though. After all, we’ll all die from something eventually and none of us can escape it.
What bothers me most about my father dying from ALS is the way he lived his life and the eventual irony of it all. You see, my father was an orthopedic surgeon who exercised all the time. In fact, some of the equipment at our local YMCA had been donated by my father and uncle, both of them surgeons and partners who endorsed exercise and physical activity at every turn. When my brother and I were young, my father forced us to accompany him to work out, hoping we would follow his example and start exercising more on our own someday. Granted, we both stayed active through sports and other pursuits, but pumping iron wasn’t really our focus. And he was hoping to change that.
For years, the three of us would visit the YMCA, work out to the point of exhaustion and then repeat the process several times each week. Dad even hired personal trainers to set us up with exercise routines tailored to our specific needs. Combined with his exercise tips, we learned everything we needed to know and worked hard to get in shape, at least in the beginning.
Unfortunately, my brother and I responded to being forced to exercise in very different ways. He continued long after we were free to choose for ourselves and still exercises regularly today. I went the opposite way, choosing to exercise indirectly through work or other activities like sports. Oddly enough, the same thing happened with church. Being forced to go anywhere didn’t really agree with me, but my brother could find all sorts of value in it and, as a result, is a more religious person than me. And in this respect, I was more like my father.
Diet and nutrition were also important factors in my father’s life. To this day, I have never seen anyone consume as much fruit as him, sometimes two or three different fruits in one sitting. As for drinking, he would occasionally have some Vermouth with dinner, or the rare glass of wine or cold beer, but generally abstained. Smoking was never his vice, either. Instead, he would lecture me for hours about its dangers once he discovered that I had taken up smoking cigarettes. And no matter what ailed me, he always claimed it was the result of my smoking.
My dad was also a man of adventure and always took us on trips full of excitement and thrill-seeking, as evidenced in my earlier post “Ketchum If You Can”. Over the years, we traveled all over the world to go white-water rafting, skiing, hiking and sightseeing. We ended up at one time or another in Colorado,Costa Rica, Hawaii, Argentina and dozens of other wonderful locales. And even when he was unable to accompany us, my father would still finance our trips to places like Brazil and the US Virgin Islands.
It was during a family trip to Costa Rica that I first noticed some of his physical limitations.
During most of our previous hikes, my father was front-and-center, leading us through the woods or jungles with a Devil-may-care attitude and almost unlimited energy. This trip into the rain forest was much different. Instead of maintaining his footing and trudging along, my dad would often slip or have to keep himself from falling down an embankment that normally would not have fazed him. My siblings and I expressed concern, but he always blamed it on being a little older or unfamiliar with the terrain. We had our doubts, though.
Later, I noticed that my father had started limping. When I asked what the problem was, he would simply qualify it as some minor nerve damage that would eventually correct itself. Only it never did. In fact, it started to get worse, but he insisted it was nothing. And since he was always the tough, macho man from South America, we never questioned it.
Then came the phone call that changed everything.
I was dining out in Raleigh with my fiancé and her family, walking back to the car after a delicious meal at the Macaroni Grill. The call from home seemed a little strange since I had spoken with my mother earlier, but I really started to worry when I heard my father’s voice instead. He was never much for phone calling and our conversations were always short and sweet.
This conversation was much different.
He told me he had been diagnosed with ALS almost a year before, but didn’t want us to worry so he kept it a secret during that time. Knowing next to nothing about the disease at the time, I asked about his prognosis and he told me he wasn’t sure, but things wouldn’t end well once the disease progressed. Of course, I was crushed and immediately thought the worst. He comforted me and assured me that he would be around for a long time. We both knew that wouldn’t be the case, but remaining optimistic seemed like the best approach at the time.
Over the next year, I watched helplessly as a man who was always strong, muscular and mentally sharp deteriorated into a mere shadow of the father I once knew. One by one, his muscular systems started to shut down and, towards the end, he even needed help using the bathroom. We bought him an electric wheelchair to allow him greater mobility, but he hated using it because he was so proud. About the only time he would ride it was when I brought my newborn son to visit. They only spent a year together, but my son still remembers cruising around the house with him.
The last time I saw my father, we talked about the life he helped me create for myself and the new family I had just formed, which brought him a great deal of pleasure. He just wanted to know that his own life had made a difference to someone else, which it certainly had. In fact, he had impacted nearly every person he came into contact with, including his family, friends and the hundreds of patients he served during his successful career in medicine. Everyone who knew him loved him. And I made sure he knew just how much I loved him, too.
The next morning, my mother called to tell me he had passed away in the middle of the night and that I should come over immediately to see him one last time. My sister had spent the night on the couch near his favorite chair in our living room. She woke up in the middle of the night and gave him a kiss before heading to bed. Little did she know, but that would be the last kiss he would ever receive.
I found my father lying in the same chair, only now he was perfectly still and cold. Grief took hold of us all as we wept beside his body, holding his hand or gently stroking his head. Then his body was removed and cremated, leaving me with only a small urn containing remains that were split between my mother, my siblings and me. Today, it sits on my mantle with his picture, a constant reminder of the man who spent his life for his family, and who made me the man I am today.
ALS is a terrible disease that affects roughly 30,000 people at any given time. And as I mentioned before, there is no known cure for it either, but there is hope. The ALS Association is working hard to find ways to treat and eventually cure this degenerative disease, and they are making progress. I encourage everyone to support their efforts because, believe me, you don’t want this to happen to you or someone you know and love.
And if you are living with ALS, please know that my thoughts and prayers are with you.
Posted on August 26, 2014, in Family, Perspectives and tagged ALS, ALS ice bucket challenge, Family, health, inspiration, Lou Gehrig's disease, medicine, Parenting, personal, perspectives. Bookmark the permalink. Leave a comment.