Why I Will Walk to Defeat ALS
My introduction to the world of ALS began several decades ago, while I was a seminary student at Mary Immaculate Seminary in Lehigh Township, Northampton County, Pennsylvania. Although I was, and remain, a member of The Episcopal Church, I was granted permission to study at that Roman Catholic Seminary which was operated by the Congregation of the Mission (of St. Vincent DePaul), also known as the Vincentians. My Professor of Old Testament, who I shall refer to as “Fr. Bill”, was a middle-aged man known for his warm smile, infectious laugh, the speed at which he strode the several hundred acres of Seminary grounds as well as his ability to bring to life some of the oldest books of Scripture.
All of the Seminarians were shocked when we were informed that Father Bill would be replaced mid-semester due to a diagnosis of Amyotrophic Lateral Sclerosis. Father Bill left the Seminary quickly, and was given housing and care at the Congregation’s house in Philadelphia. I did make the trip to Philadelphia to visit Fr. Bill, feeling a desperate desire to keep this man in my life. On my last visit, Fr. Bill, with a raspy voice having replaced his deep sonorous tone, asked if I would open the letters on his bedside table and read them to him. When I quizzically looked at Father, he told me that he no longer had the strength to open an envelope or even hold the pages in his hands. What a change from the vibrant hiker of those fields in just a matter of months. Not long after, Fr. Bill succumbed to respiratory failure, and his life on earth ended. However, my memories of him have lasted this long while although the mental image of a vibrant middle-aged man has been replaced with an image of a man wasted away by this disease and finally succumbing to its stealthy attack on his body.
What I know about ALS could be inscribed in fairly large letters on the head of a pin. I know that it is 100% fatal (no one has ever recovered from it). I know that the average expected life span following diagnosis is 2 to 5 years (1 in 5 will live longer than 5 years and 1 in 10 will live longer than 10 years). I know that there is no truly meaningful treatment available (the relatively old and single drug approved by FDA MAY extend life by a few months’ time). I know that the sensory portion of the nervous system is not effected, so that a delightful time of sitting on the deck enjoying the summer sun can quickly turn into a nightmare when a patient can feel an insect crawling up a leg, but can do absolutely nothing about it with muscles that will no longer contract and a mouth that is unable to speak a single word to alert anyone to the need for assistance. I know that the 2014 Ice Bucket Challenge has helped tremendously in providing funds for research into this disease so that a cure might be found. And I know that more simply must be done.
My part in helping will include my attendance at the October 15th Lehigh Valley Walk to Defeat ALS. I’ll gladly donate a few hours of my time in anticipation that the money raised that day will make a difference in finding a cure for this disease, as well as making support for current patients and their care-givers possible. So, please, come out to Coca-Cola Park on that fall Saturday, walk a few miles to benefit research as well as patient and family support services, have a grand and glorious time, and make a donation toward a very worthy cause. I’ll be in the background doing whatever I can to help, but please stop by just to say “hi”, please.
Learn more about the walk and register today at www.lehighvalleywalktodefeatals.org
Fr. John Wagner