As I sit here in the living room of my parent’s home, I now realize exactly what my Dad means when he says, “Even though I have ALS, I consider myself one of the lucky ones.” If you know anything about the disease, you are probably wondering how someone could feel this way when staring into the face of such a devastating disease. Allow me to explain.
In November 2004 my father was diagnosed with ALS after a number of trips and falls during his routine daily activities. Because of the newfound “clumsiness,” he was no longer able to perform the functions of his job that he loved, driving 18-wheelers. Not only was he unable to drive his truck as he had done for the 20 plus years prior, he was now faced with the reality that ALS would forever change every aspect of his life.
My father is a fighter and has more will than anyone I have ever met. He is very matter-of-fact in his approach to most things in life. He taught my brothers and I that you accept things for what they are. Change it if you can and accept it if you can’t, carry on and don’t feel sorry for yourself. I knew his approach to battling this disease would follow suit. I had recently moved to Virginia when he was diagnosed. After I heard this news, I was determined to educate myself and my family about everything we could about this disease. That would be my contribution, my way of supporting his fight. I found the local ALS Chapter, attended some meetings, and got as involved as I could. We started a walk team for the Walk to Defeat ALS and we have raised, and continue to raise, several thousand dollars each time we walk (we now walk in the Virginia Beach VA walk as well as the Greater Chicago walk). My Father, Mother, and I have been to Washington DC multiple times for National ALS Advocacy Day on Capitol Hill and additional Advocacy effort with the National ALS Association. During the first trip we made together, I realized that there is possibly nothing more open and honest than hearing my father talk about his experience with ALS. As travel has become increasingly difficult for my Father, my husband and I have continued the advocacy efforts forward on recent visits to DC.
I have also been fortunate enough to serve on the DOD review panel as a consumer reviewer. My father is a Vietnam Veteran and has received a great deal of support from the VA. So, I am very much honored to be serving on the DOD panel. This opportunity came after an advocacy day which we participated in so receiving these funds was proof that we’d made a difference. There would be funding to support programs trying to cure or treat or even figure out this disease.
This November will mark 7 years that my Father has been fighting ALS. The average patient diagnosed with ALS loses their battle within 18 to 24 months of diagnosis. This certainly makes us feel like we have been one of the lucky ones. However, I sit here considering all that we’ve shared as a family over those 7 years and realize that is the reason we are truly the lucky ones. This disease has brought us together as a united front, a family in a fight against this disease. In seven years, my father has watched his grandchildren grow, learn to drive, hit home runs, score soccer goals, dance in recitals, cheer in competitions, and enjoy seven additional Christmas’ and years of birthdays, and a birth, all with a new appreciation that has been brought on by this awful disease. He’s seen his children grow into providers and awesome fathers, he walked me down the aisle at my wedding, and this week he got to meet my newborn son (his 6th grandchild) for the first time. It is in these moments, as he rolls in his motorized wheelchair into the room where my baby is sleeping to watch over him for just a moment, I feel the impact of what he means when he says he’s lucky. I too feel very lucky as I realize all that we have been able to experience and share with him.
There is nothing that brings me more pride than to carry this effort forward for him, for our family, for all those with ALS.