Morgan: Sharing ALS path with a family a humbling blessing
Posted April 8, 2015
Of the many blessings I’ve had because of my job, the one I’m most grateful for is the remarkable people who’ve allowed me to be a small part of their lives. Dugan, Autumn and Paul Smith are one such family. Not only did they let me tell their most painful story, they let me see how true love and commitment can make pain bearable and give you the will to keep moving forward when it seems hopeless.
ALS, Amyotrophic Lateral Sclerosis, better known as Lou Gehrig’s Disease, robs the ability of the brain to communicate with the muscles of the body. The mind often stays sharp. It doesn’t discriminate, and the life expectancy is two to five years after diagnosis.
When we first met in 2009, Dugan was full of life. The symptoms of ALS had begun to affect him – his speech slurred and his limbs were weak. It was just Dugan and Autumn during our first visit. Paul was due to arrive in just a couple of months. I’ll never forget the joy that exploded from Dugan as he talked about the upcoming birth of his son. They were well aware of the prognosis but the hope that came with the expectation of Paul far outweighed their fear of the illness. This is the balance of a disease like ALS. Still looking forward, planning for a future, all the while knowing how the story is likely to end.
Over the next few years, Dugan continued the path most ALS patients travel – a specialized wheelchair as his muscles succumbed, constant care and tubes to allow him to breathe. When I look back at our video, I’m still struck by Dugan’s spirit. Even in his weakened state, when we spoke of Autumn and Paul, his eyes glowed and his smile wide and contagious.
As Dugan entered the later phase of the disease, Autumn shared one of my favorite pictures of Dugan. He was sleeping with his arm gently across little Paul who you could tell was in one of those really deep, peaceful sleeps that showed how much he was comforted being by his daddy. It was an image that conveys everything you need to know about the love between a father and son. Despite his illness, Dugan was still Paul’s protector, his best friend, his superhero, his dad.
Toward the end of his life, Autumn wrote an update on Dugan. He was in the hospital, very sick, and in a remarkable moment of clarity, Autumn said Dugan looked up and mouthed "Heaven."
She reiterated to Dugan that “if you go home you will die.” Autumn continued, “He then told me in the plainest words I've lip read in three years, ‘Please let me go.'"
Dugan died peacefully at home on the first of March 2014. He was 40 years old.
Over the past year, awareness of ALS has increased astronomically in large part because of the Ice Bucket Challenge. My friend Chris Rosati of Durham, known as the Krispy Kreme man, has certainly helped spread the word nationally with his positive approach to fighting this disease. More recently, Larry Stogner from WTVD, bravely made his diagnosis public. With awareness and funds that support research, we will beat this devastating disease once and for all.
The trust Dugan and Autumn put in me to honestly and honorably tell their story when they were at the same time experiencing the best of life and the worst of life was humbling.
My life is better for knowing Dugan, Autumn and Paul. I hope yours will be as well.