Growing up, I only knew ALS by the name Lou Gehrig's disease. I did not know who Lou Gehrig was nor did I know my grandfather who was killed by the disease. All I knew was that the disease was horrible and filled my family with fear and pain and robbed me of a grandfather.
My grandfather was a faithful husband, loving father and a strong, successful man who operated a construction company. He worked on large infrastructure projects around the United States at a time when the country was expanding its infrastructure rapidly. He had the honor of working on the Hoover Dam, the Keller Memorial Bridge in Decatur and several other cantilever truss bridges noted by the Historic American Engineering Record at the Library of Congress. Even as a child, I loved the verbal historical legacy that lived on through my grandfather's work. When we would travel and see one of his large projects, I loved that the fruits of his labor lived on despite his life being taken.
It was less than six months from the first time my grandfather stumbled until his once large and strong body withered away and he slowly suffocated as his wife and two daughters helplessly watched him die. After he lost his voice, my grandmother bought him a stamp pad and alphabet stamps to stamp out messages to communicate. Eventually, he could not even pick the stamps up and he just laid there powerless, completely in his right mind, suffering until the end.
The cause of ALS is not completely understood, and scientific understanding regarding the physiology of this disease has changed over time. When I was young, I heard that my grandfather's exposure to chemical warfare during World War II was the reason he had ALS. Before my mother had children, she was told the disease was not hereditary. As a teen, I was told there were genetic indicators. By the time I was pregnant with my third child, I was offered a genetic test to see if I was at risk but I have been too afraid to take the test. I just do not want to live my life knowing that my life, or the life of my children, could end that way.
A reoccurring nightmare has haunted me since I was little that I would lose the ability to control my muscles. In my dream I am trying to escape harm and I keep falling and cannot breath. In real life, I have heard the stories of my grandfather's battle with ALS and have watched two of my friends die from this disease. The disease has been my nightmare but it is horrifically real and powerful.
My children all took the "Ice Water Challenge" Sunday. They just got wrapped up in the moment and peer pressure and the fun of it all. I did not explain to them why the challenge bothered me because they are too young to understand, nor would I want them to at their ages. Just know that the shock, the discomfort, the inability to breathe during the challenge is just temporary and it's a minor inconvenience compared to what those whose suffer from the disease endure. Hopefully one day, research will be supported enough to find a cure. Until then, I will continue to support the research as I always have.
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