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My View: We’ve come a long way dealing with mortality

By Barbara Brown

I was 22 and the second-oldest of seven children when my father died, in 1965, after a three-year battle with Hodgkin lymphoma.

At that juncture in our health care history, the word cancer and associated diagnoses were not readily talked about. In Dad’s case, his doctor withheld his diagnosis from him but shared it with our mother and the older children in the family.

In 1969, Elisabeth Kübler-Ross’ book, “On Death and Dying,” opened a window on more honest conversations with the terminally ill. Today, it is the patient who “owns” the diagnosis and works in relationship with the health care team to establish a plan of care.

What were the consequences of shielding our Dad from this terminal illness? And how did it affect his children? Our father was denied the ability to share his fears, ask questions related to his treatment, express the joys and accomplishments of his life and come to terms with the ending of his life. His children needed a half century to share our own memories and impressions of him, and help change the images of the youngest who, sadly, remembered him for years as “sick, dying or dead.”

Perhaps the culture of the time, and the fact that our mother remarried two years after his death, had some impact on our collective silence. Now that we are all married with children of our own, we appreciate all that he, and we, were denied by his early death. It was the youngest sibling who recently framed the questions: “What year was Dad first diagnosed with cancer?” “Why have we never talked about his illness?” Thus began a rich and rewarding dialogue among us.

A rediscovered treasure trove of photos revealed scenes from our parents’ courtship, the lively friendships they shared as young marrieds, the beginnings of a family and photos of our Dad as a young soldier and at several of his places of employment. These revelations brought more pictures that had been given to our sister-in-law containing pictures of the three youngest children.

With modern technology, my brother was able to scan and share the photos to be viewed by each of us. Long-buried memories brought forth conversations that flowed back and forth in emails. Even though each of us had a different set of memories that occasionally overlapped, they all, in my brother’s words, wove “a rich narrative tapestry, a vivid and accurate telling of our family’s experience of our Dad.”

This process allowed the youngest to know the father who, due to illness and death, he had never really known. It started a healing conversation, long overdue, allowing all of us to reclaim a Dad who loved telling a good story, relished his family and friends, had a wicked sense of humor and, according to a comment made by his older brother in a memoir, “people were the air he breathed.”

Today, with more open dialogues about cancer, improved knowledge and treatments to effect cures and extend lives, it is hard to imagine the secrecy that existed during the time described. Because of that experience, I have joined a group at Roswell Park Cancer Institute to encourage patients to share their story. Called Life Recorded, it is modeled on the popular series, StoryCorps.

According to the brochure, the program “offers the opportunity to remember, celebrate and record the lives of loved ones for generations to come.” In addition to providing a recorded history, it is believed to have therapeutic value in seeing the whole of life and not just a threatening illness. Our family’s recent experience has proven that point quite well!

Barbara Brown is a pediatric nurse practitioner exploring new volunteer opportunities in retirement.
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