The ALS Association

My ALS Story

Jeanean R. Corvallis, Oregon

My husband died four years ago from ALS, and it is fitting that I write this today as he would have been 39 years old today. I wish he were here to start his last year in his 30’s. I also wish he were here to celebrate his son’s 7 year old birthday in three weeks. Our ALS journey started when he was rock climbing. He noticed his big toe was not moving as well as the others. We shrugged it off as nerve damage from his whitewater kayaking days and shoving his feet into small boats and rock climbing shoes. After some time, more symptoms, and many doctors later, we were told what we already suspected. I remember lying in bed in the middle of the night nursing my five month old son and realizing that Kevin was going to die. My world had changed, and we had to face it. We did face it, even though at times it was kicking and screaming. We wanted this nightmare to end. Kevin’s course of disease was typical of many ALS patients, and he was fortunate enough to try different treatments. He participated in a clinical trial knowing that it may prolong his life minimally but more importantly would provide data for future ALS patients. Kevin was determined, persistent and bright, and he carried that into his life with ALS. He helped develop a climbing crag near Portland, and when he could no longer climb, let alone walk, his friends carried him down a steep trail so he could spend the day with them as they climbed. He was loved and respected by so many people and even as he suffered the long and torturous progression of becoming paralyzed, he remained a leader and beacon for others. He became our teacher, and we carry the lessons of life and death with us now. The ALS Association was there for us when we were in need. Whether it was equipment, navigating finances and insurance processing, or providing emotional support and education about disease progression, they were available. Just knowing they were there provided a level of comfort that we otherwise would not have had. I have so much gratitude for the people who stepped forward to help us and who gave us gifts both physically and emotionally during that time. What does it mean to have ALS a part of your life? It means I no longer have my husband here, and my son no longer has his father. But it also means that we have experienced a deeper connection to life and others and truly know what infinite love is. I hope for a cure. I hope for awareness. I hope for action. I hope for treatments.

 
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