In the late fall of 2019, my husband of 30 years, Shane, was diagnosed with an aggressive form of lung cancer. He was 55 years old. Chemo and radiation bought him a little time to do things he wanted to do as well as to spend time with friends and family. Unfortunately, shortly after he was diagnosed we were also in a worldwide pandemic that restricted everything.
I was never really afraid of death or dying; it has always been a natural part of life for me. With that said, I also never had assigned any special weight to the dying process. People lived, people died. Of course, it was sad and difficult but we move forward. But I was missing something back then.
Witnessing the deterioration of a mind and body from a terminal illness caused me to look at death differently. I began to feel especially adamant about dignity and respect, and about Shane being surrounded by love and compassion when he was dying. I felt as if this would be my one last gift to him.
In the summer of 2020, I began work on a legacy project for him. I asked all of his friends to write something about him, a story funny or otherwise, that showed Shane’s character. I would put the collection of stories into a book for our new grandson who was born shortly before the diagnosis. The letters poured in and Shane sat silently as he read each one carefully. He was amazed at the impression he left upon people and he cherished those letters. I was so happy that he was able to understand the impacts he made while he was still living.
Over the next several months, it became clear to me that in the last 100 years or so we have become so focused on living that we avoid the topic of death until the last possible minute. We fail to plan for our departure, leaving it to those who remain. We call a service that picks up the body. We call a funeral home for arrangements. We used to tend to our dying, but now these rather personal events are left for a business to handle for us. It’s all rather impersonal.
Every single day someone is dealing with the overwhelming loss of a loved one and the decisions that go along with dying and death. It is extremely traumatic emotionally and physically. And even when you know your loved one has years or months, or weeks—no amount of time will ever make it less difficult.
Shane did hospice at home and our adult children and I are blessed that we had that option. There was always someone here with him, to hold his hand, lay with him, talk to him, and love on him. I couldn’t help but think of the people dying alone in the hospital during the pandemic. No one should ever have to leave this world alone.
Shane passed ten months after his diagnosis at the age of 56. His death made a profound impact on our family and his journey was chronicled in the book Bullshit to Butterflies. It was only a few weeks after his passing that I discovered what an End-of-Life Doula (or a Death Doula) was. I was fascinated. Just like there are birth doulas that provide a mother with emotional and physical support as they bring a child into the world, a death doula is there for emotional and physical support of the dying and their family during the dying process.
It made complete sense to me. It wrapped up all the things I have been thinking about for those past ten months. Death is just as important as birth, maybe even more so. We come into this world with a certain amount of celebration, we need to leave in celebration too! In addition to the celebration, there is a certain love and respect, and reverence to bestow upon our loved ones. And that is why I decided to become a doula.
I received my training from INELDA. I chose the International End of Life Doula Association because it was co-founded by Henry Fersko-Weiss who introduced the first modern-day doula program in the United States.
“To live in the hearts we leave behind is not to die.“
THOMAS CAMPBELL