Amyotrophic lateral sclerosis or ALS is a disease that attacks the nerve cells and pathways in the brain and spinal cord. A French neurologist, Jean-Martin Charcot, identified the disease in 1869. As those nerves and cells are attacked, it dramatically impacts one’s muscle movement, rendering those affected with complete paralysis in the later stages of the disease. It is called Lou Gehrig’s disease after the great Yankee baseball player was diagnosed with the disease in 1939 and died from it two short years later. His farewell speech given in July of 1939 where he called himself the luckiest man alive, despite suffering from the early ravages of the disease, is considered one of the bravest and most poignant moments in all of sport.
Unfortunately, I have seen up close and personal the utter nastiness of this disease as three friends have died from it.
Janet Rife was truly an angel on this earth. She served others like few I have known. She was beautiful and the mother of six children. She was taken at the early age of 54 less than two years ago due to ALS. Her husband Richard worked with me for a number of years as my #2 man in the Novell Legal department. I remember the pain Richard felt for his companion as I saw him just a couple of weeks before Janet’s passing. As was written of her – “From 2001 to 2004, Janet served a full-time mission with her husband as president of the Korea Daejeon Mission. In this calling, she was surrogate mother to 350 missionaries, caring for their health, showing them love, and teaching them insightful gospel lessons. She set a great example of Mormon womanhood for the missionaries and helped them develop a deep love of the scriptures.”
Dr. Greg Gordon was my neighbor and buddy. He lived two doors down. We were the same age. We worked closely together in our church congregation. Everyone loved Greg. He had the warmest smile and one of the cheeriest dispositions I have ever seen. He was also the Father of 8. All of this made his diagnosis with ALS in 2008 so painful, particularly for his Family that he loved so much. Unfortunately, as he explained to me one day, his particular form of Lou Gehrig’s disease attacked his brain first and went downward throughout his body. He was gone in what seemed to be a flash – roughly six months.
Captain Elwin Pulsipher was the first person I knew that had Lou Gehrig’s disease. When I met him back in the late 1980’s, Elwin Pulsipher, a former war hero and military leader in Vietnam, was in the later stages of ALS. He was confined to a bed and barely had the use of his fingers. Almost completely paralyzed, the only parts of his body that he could move regularly were his eyelids. Nonetheless, his mind was still sharp. Elwin is, to this day, one of the greatest examples of pure service that I have ever witnessed. He helped change my thinking from inward to outward. This great man and former leader was all about giving with no thought of getting.
On a weekly basis, despite overwhelming odds against it, Elwin sent personal letters to ten missionaries from our church congregation who were serving around the globe. The process was difficult and painful. It took hours for him to write each one. His family connected electrodes to his eyelids and, as he would blink, a cursor on his computer would move to each letter in the alphabet. Blink by blink, he would create each letter, then a word, and then a paragraph. I visited him monthly and listened to him share his connections with the missionaries. He sacrificed greatly to encourage and share his faith with them, and the missionaries—and I—were profoundly impacted by his service.
Of course, the ice bucket challenge has grown virally and has blessed the ALS Association magnificently. Don’t we love viral stuff? It keeps life engaging and interesting and in this particular case the virality has helped raise over 42 million dollars in a thirty-day period exceeding the prior year’s effort during the same period by over $40 Million. Anything that can help eradicate this vicious disease is absolutely awesome in my view. Of course, the irony is that the idea of the ice bucket dump was to require those that refused the challenge to make a donation to benefit the ALS cause. We have now flipped that challenge on its ear and those who take the challenge now also give. Great outcome! I encourage all who may read this blog to donate to the eradication of this monster. Do it today. I hope you will do so. To donate go here: http://www.alsa.org/donate/