The most effective way to raise awareness about ALS is to share a story about someone you know who lives with or has lived with the disease.
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Personal Stories: “Contemplating My 7-Year Journey” – Bob Schoeni
July 29, 2015 marked our seventh anniversary of my diagnosis. What does one do to “celebrate” the anniversary of such an event? I’m not sure. But for some reason I opened up my email and re-read messages sent to Gretchen and me the day we announced our situation to friends and colleagues.
Re-reading those messages brought back some intense emotions: despair, lack of hope, and concern for Gretchen and the girls. It’s probably why I have only read them a few times since 2008. We are incredibly fortunate that my health has not deteriorated as quickly as we thought it would. My legs and arms are getting weaker, and my voice is not nearly as strong as it was a year ago. Thankfully, I can still function fairly independently, enjoy my family, friends, and community, and continue to work half-time. When asked, most people say they wish for a speedy death – maybe a heart attack – with no lingering disability or limitations. Seven years ago I probably would have agreed with them. The last several months I have thought quite a bit about this question. I’m struck by the fact that many different religions and life perspectives value struggle. • I ask not for a lighter burden, but for broader shoulders. – Jewish proverb • We must embrace pain and burn it as fuel for our journey. – Kenji Miyazawa, devout Buddhist • The gem cannot be polished without friction nor man without trials. – Confucius • There is nothing that can cleanse your soul like getting the hell kicked out of you. – Woody Hayes (Okay, Woody Hayes might not qualify as an admirable life teacher, at least not for this Michigan fan, but you get the point!) While I can’t say I am glad I have ALS, I know my path with this disease has been much easier than others given the slow progression of my condition and the incredible support I have received from so many different people. So it is less clear to me today than seven years ago that the world would be a better place if there were absolutely no disease, sickness, or struggle.
Personal Stories: Jim Szumko
Jim Szumko, born in 1947, spent most of his life in Michigan. He grew up in Flint, attended Eastern Michigan University, and eventually married his high school sweetheart, Gustie Macko, and raised a family in and around Ann Arbor. Jim was diagnosed with ALS in May 2008. Soon after, he and Gustie moved from Saline to Ann Arbor to live near their son and his family.
Jim’s daughter-in-law, Christine, speaks about this as an intense experience was for their sons, who were eight and four at the time. The boys saw their grandfather lose capacity, they saw people helping him up after bad falls and feeding him meals, and they saw their parents’ worry about how to care for Jim as the disease progressed. But they also experienced a family pulling together to love and support each other through pain and grief. In the last year of Jim’s life, the boys came to know what kind of adventures could be born from new challenges. One evening, Jim and 8-year-old Alex ventured off to a Cub Scout event. Jim was in his motorized wheelchair and Alex on his scooter, and they were traveling over a mile and a half away. Jim had long lost the ability to drive anywhere by himself, and even with the motorized wheelchair he wasn’t embarking far. Alex was going beyond his usual scootering limits, and would be responsible if anything happened to Jim. As Christine says, “I can’t help but imagine the thrill and the sense of freedom that they both felt on this adventure.” Jim died on October 1, 2010.
Personal Stories: Stan Bielby
Stan Bielby, a long-time resident of Ann Arbor, was 44 years old and a father of three boys when he was diagnosed with ALS. He was an Electronic Technician at the University of Michigan’s Human Performance Center, and an active volunteer in the community. He coached his sons’ sports teams (especially baseball), served as the Cub Scout leader of Pack 5 from Eberwhite School and as president of the PTO Council.
Stan was passionate about his work and his family. Though many descriptions of ALS indicate that the disease “leaves the mind intact, while paralyzing the body,” this is not always the case. Unlike most patients, Stan’s first symptom was not physical, but mental: “He did things that were not typical of him”, says his wife, Nan Bielby Sudia. For Stan, a creative inventor, and for his family, this early symptom of dementia led to uncertainty around the disease. Stan’s physical symptoms did eventually progress, but his legs remained strong. He developed a passion for roller skating which probably came from his youth when he was an avid ice skater and hockey player. Nan recalled, “Even when he did not have the use of his arms, he still went roller skating a few times a week.” Stan passed away on July 29, 1981, at the age of 46.