Finding Joy & Laughter in the Face of ALS

My husband and I were sitting at the donut shop with the Donut Posse when our friend Vickie shared that the doctors believed her husband, Tom had ALS. It wasn’t definitive and they had more tests to do but this was the diagnosis that seemed most likely with his symptoms. We solemnly took in the news and what that would mean for their lives going forward.

Tom’s life had always revolved around physical activity. He was a dedicated PE teacher, a wrestling coach, and a competitive bodybuilder in his youth. Much of his sense of purpose and fulfillment was derived from his involvement in sports and movement. Now, he was faced with a disease that threatened to strip him of the activities that defined his life. Not only did this diagnosis affect Tom, but it also had a profound impact on his relationship with Vickie, as physical activity was a shared passion that brought them together.

They faced numerous questions about their future. What would life look like without their beloved activities? How would they find joy and meaning without the physical pursuits that had once brought them so much happiness? In an effort to help Vickie navigate this challenging journey, I gifted her the book “Being Mortal,” which provided guidance on asking difficult questions and offered examples of how people cope with terminal illnesses and their own mortality.

As the disease progressed, Tom and Vickie demonstrated incredible resilience and creativity in crafting a meaningful life despite its challenges.

Quality Time with Loved Ones Tom’s declining mobility didn’t deter them from spending quality time together. They discovered new ways to connect and share experiences, such as visiting a local lake to feed ducks or taking leisurely strolls in the mall with Tom in a wheelchair, sparking conversations with fellow mall-goers. Their regular trips to Dutch Bros. drive-through coffee not only provided a caffeine fix but also allowed them to build connections with the friendly staff. They continued to invite friends over to their home, adapting to Tom’s energy levels and adjusting the length of their visits when needed.

Laughter in the Face of Disease Despite his limited mobility, Tom’s sense of humor remained intact. He had an enduring ability to laugh at jokes and contribute his own sense of humor, finding ways to see the lighter side of his diagnosis and its accompanying symptoms. Sharing funny stories from his past became a cherished tradition with Tom.

What stands out most about Tom’s journey is his ability to find laughter and joy even in the face of a devastating disease. Tom’s infectious laughter made everyone want to join in, and it’s a lasting memory for me.

Throughout his battle with ALS, Tom continued to be a teacher, imparting a lesson about resilience and determination. He showed me that even in the absence of physical activity, there are countless ways to find happiness, laughter, and quality time with loved ones.

Tom is greatly missed, but his legacy of love and laughter lives on in the hearts of those who were fortunate to know him.