By Jim Harder
This article is about a family member who recently succumbed to a disease referred to as Lou Gehrig’s disease or ALS.
A person diagnosed with ALS lives an average of three to five years from onset of the neurodegenerative disease, which gradually paralyzes all of a person’s voluntary muscles. Some people stricken with ALS choose to live with the assistance of a ventilator that helps prolong their lives. So is the story of Joe Winter, a member of St. John the Baptist Parish in Mankato, Minn., who lived with this disease for about 15 years.
It isn’t a story about how Joe succumbed to this cruel disease, but about the unselfish way he chose to live in order to be with his two children and family. It would have been easier for him had he refused the ventilator and died, but he took the more difficult, courageous route and chose to live. In doing so, Joe taught his children and family what it meant to live and ultimately die with dignity.
Before his illness, Joe could have been described as a normal human being who was a good father and cared dearly about his children. After he was diagnosed with ALS, his demeanor didn’t change, even though he knew life would never be the same. Joe put every ounce of energy he had into fighting the disease by learning all he could about possible cures and ways to slow down its progression. He was able to live with optimism regardless of the outcome. He held out hope for the day when that disease would burn itself out. Unfortunately, that day never came.
As the years passed and the disease progressed, Joe was able to realize the finality of his situation and bravely lived with ever-increasing pain and deteriorating physical conditions. His only forms of communication were the computer and e-tran board, which allows people to spell out words by turning their eyes toward different letters on a display. He could move his lower lip enough to operate a mechanism that allowed him to type, but ever so slowly. He also had limited use of his eyes in order to spell out words from the board. But in time even those meager means of communication would fail him. Again, Joe would bounce back and hope for better days. Unfortunately, those days never came either.
Every time Joe faced a new challenge, whether it was diabetes, meningitis, blurred vision, bed sores, hospital visits or depression, his hopes would dim but never fail. Instead of giving in to self-pity and despair, Joe turned outward to his children and family for support and guidance, and inward for spiritual strength and serenity. It was during these times when his parents would join Joe in reciting the rosary, watch Mass on EWTN, and read spiritual passages from books that helped strengthen his love for God.
He would write letters to family members and his children for present and future considerations. He would also interact with so many dedicated and accommodating caregivers, which was such a blessing for all.
The disease that ultimately took Joe’s life on All Saints Day, when he was 50, couldn’t rob him of his ability to view life with hope, faith and an enduring love for all. He not only became a symbol for life, but an inspiration for those fortunate enough to have met him.
In times of sorrow he gave comfort to family and friends. In times of despair he gave hope for those consumed with their own pain and suffering, and in times of uncertainty he gave all of us hope to continue living in spite of our struggles with life.
Finally, Joe gave his children, parents and all family members the opportunity to share in his process of dying. Of all the gifts he shared with us, the unselfish act of allowing his family to grieve with him allowed everyone a chance to say goodbye. He reminded us all that it takes courage to die with dignity.
(Jim Harder of Davenport is a brother-in-law of the late Joe Winter.)