Matt DeVey is a Digital Product Director in Dearborn, Michigan.
My father, Bob, died of mesothelioma late last year. Seeing his transformation from a virile guy always on the move to a frail patient who struggled to get out of bed was rough. Even as his faculties left him and his pain got worse, he fought to maintain control of what life he had left.
His final wish was to die with dignity, but his home state of South Carolina doesn’t have a death with dignity law. All he could do was share his story with the hope that he could convince legislators that aid in dying was an essential end-of-life option for people with a terminal illness like his.
It is my hope that my father’s story will convince lawmakers in states across the country to give people the freedom to decide how they die.
Now that he’s gone, it’s up to me and his loved ones to carry his legacy forward. I have chosen to do so by advocating for the end-of-life option Dad wanted so badly but could not access. People don’t like talking or thinking about death so this issue isn’t often on their radar. But having seen my Dad struggle for the last year, I’m convinced it should be.
Soaking Up Life
Dad loved adventure. Each day was an opportunity to see or do something new. In his youth he got around the country by hitchhiking or motorcycle. In his wiser years he graduated to camper van and bicycle. In fact, just prior to learning he had cancer, he completed a 350-mile bike tour of the Blue Ridge Mountains with his older brother.
He wanted to learn everything he could about wherever he was. That’s why he became a docent at the former plantation neighboring his house in South Carolina. When I was a kid, you could always find one of the books from the encyclopedia open on our kitchen table. I can still hear Dad saying “Look it up!” in response to an unknown question.
He was always busy, always working. Some of my favorite memories of him are mental snapshots of him in repose. I can see him lying on the beach with his hat pulled over his face, napping in the hammock with an open Business Week on his chest, or sitting around the campfire smoking a cigar and staring at the stars. Those moments I could look at him and tell he was thinking about how lucky he was to have it so good.
Dad was diagnosed with cancer late in 2017. I wanted to soak up as much time as I could with him in his last year, so I traveled from Detroit to South Carolina often. In the beginning, I took my two- and four-year-old boys with me in hope they would retain some memory of their Bumpa.
When we were together, I saw Dad trying to look into their future when he looked at them, imagining what they would one day become. Then he’d tear up with the realization he wouldn’t be around to see it.
Toward the end, it was just me who went to visit.
Every goodbye had had more finality and teardrops than the last. His legs had become spindles, he slept more and ate less, and couldn’t get in his wheelchair on his own. The world traveler was trapped in the house and got no joy from being alive. He was ready to go. Every time I bent down to hug him goodbye, it felt like the last time.
Sharing His Story
Dad wanted to choose the way he said goodbye to his family and the world. He wanted to gather his kids and my mom together, make sure all the love was shared one last time, then go to his room and be on his way. Dad was always in control and he just wanted to make one more executive decision.
I wish the state of South Carolina allowed this form of goodbye. Death with dignity doesn’t seem like too much to ask.
Dad let the Charleston newspaper into his struggle during the last year of his life in an effort to bring awareness to this issue and hopefully spur change to the laws in South Carolina. I’m so proud of him for having the courage to let the paper into his world as his life came to an end. Dad was a very private person, but he put that aside to fight for what he believed in one last time. Our family hopes the article in the Post-Courier ignites the debate in South Carolina and leads to legislation giving people more freedom to choose how they die when the time approaches for them.
Support, Not Stigma
The majority of comments on the article were supportive, which gives me hope that Dad’s story has brought issues of death and dying out in the open, increased awareness of death with dignity, and, hopefully, reduced the stigma around assisted dying.
I hate the association of this issue with suicide. He was dying anyway. He was in constant pain and could no longer do anything. He just wanted to say goodbye on his terms.
It is my hope that my father’s story will convince lawmakers in states across the country to give people the freedom to decide how they die. This is an option the majority of Americans support. Please don’t wait until this issue hits too close to home and you’re left wishing there was legislation in place the way we were. Let’s do something now!