Currently the Senior Vice President of Grief Programs at Hospice Foundation of America (HFA) and professor emeritus at the Graduate School of The College of New Rochelle, Dr. Doka received the 2019 Lifetime Achievement Award from the Association of Death Education and Counselling. A prolific author, he also serves as editor of HFA’s Living with Grief®book series, its Journeys newsletter, and numerous other publications.
In this excerpt, Dr. Doka shares how an accidental career detour and an offhand comment converged to reveal a previously unacknowledged category of losses. Hear the full conversation on The Gifts of Trauma Podcast.
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The best way to describe how my 50-year career in grief began is—accidentally. When my planned internship placement fell through and I was redirected from Spofford Centre in New York City, at the time the crème de la crème of juvenile delinquency, to Sloan Kettering cancer hospital, I didn’t have an option. So I was introduced to grief through children dying from cancer.
My discovery of disenfranchised grief was also accidental. I was teaching a family course in gerontology, and we were talking about widowhood when one of the women in my class said, “If you think widows have it tough, you ought to see what happens when your ex-spouse dies.” And I had never, ever thought about that—never thought about grieving an ex-spouse. I expanded the pool from ex-spouse grieving to include people involved in intimate relationships without the benefit of marriage—gay and straight. One of the women said, “I’m not a widow.” Her fiancé had died a week before they were to be married. “It’s like I don’t have a right to grieve.” That’s when I started using the term disenfranchised.
When I first presented this term at a conference, I was surprised again. People lined up to speak with me afterwards: “This is like when my high school coach died.” “This is like when…” They were taking me through all of these boxes, check, check. They expanded the concept back then, and they’re still expanding it today. So it’s been a very rich and interesting line of ongoing research.
Many people ask, what is grief, really? I define it as the energy generated by a significant loss. And then—how do you cope with that stress?
We often look at grief as affecting us emotionally, and it does, expressing itself through a range of emotions from relief to sadness. Sometimes the emotions are positive. I remember when a good friend of mine died—I was godfather to his three-year-old son. I remember looking at this kid at the funeral and thinking, “you don’t know it, kid, but we’re going to work well together.” And we have. He’s now 43 and we still have a regular Sunday phone call. He’s like a second son to me. So sometimes grief involves unexpected commitment—and unexpected gifts.
And of course, there are horrible feelings too, like guilt and anger. But we often overlook that grief also affects us physically. We may experience physical aches and pains. Cognitively, we can be unfocused and confused. Spiritually, it can both distress and empower our beliefs. It also affects our behaviour. Some of us seek reminders of the deceased; others avoid them.
I often describe grief as a roller coaster. We have ups and downs, good days and bad days. But the one place where the roller coaster analogy breaks down is when we live with loss. Even years later, you can have surges of grief. When my grandson was born, the first thing I did… I started dialling my dad before realizing that he had died 10 years earlier. My grandson was named after me, and I know my father would have been so pleased. So as happy as I was at that moment, there was also sadness. We often have those bittersweet moments, even years later, when we wish that person could have been with us to witness something very special.
Disenfranchised grief encompasses relationships that aren’t generally acknowledged, like an ex-spouse, and losses that aren’t recognized, like a perinatal loss. Then there are stigmatizing deaths—homicides, for example. You’re likely to know both people involved, so you may find yourself mourning both the victim and the perpetrator, or mourning one and reviling the other.
Grieving styles also come into play. For intuitive grievers, grief comes as waves of emotion. When asked how they express it, they might say, “I screamed, I shouted, I cried. That’s what helps.” At the other end of the continuum are instrumental grievers who have a more problem-focused way of coping. If you ask them how they experience grief, they’ll rarely speak in emotional terms but instead in cognitive or physical terms: “I felt like somebody punched me in the stomach. I felt very restless. I kept thinking about the person.” What helps them is often doing something.
Neither grieving style is dysfunctional. There’s nothing wrong with intellectualizing if it works. But we tend to disenfranchise instrumental grievers early in the process: “What’s wrong with this person? He’s not crying.” And we target intuitive grievers later: “What’s wrong with her? Why is she still crying?”
Culture plays into this too. I grew up in a bicultural family—my mother’s Hispanic, and my father’s Hungarian Protestant. At family funerals, as a little boy, my Hispanic uncles would pick me up and say, “It’s okay to cry, Kenito; it just means you love the person.” And my Hungarian Protestant uncles, very stoic, would say, “Be strong.” You don’t need a genogram to understand the mixed messages.
Traumatic events can also cause disenfranchised grief. My aunt died on September 12, 2001, the day after 9/11. She died in our home, at 96, surrounded by family. But when I shared those details, people lost interest and her passing was dismissed as not one of those really important (9/11) deaths.
Probably one of the most significant changes in the field of grief is what we call continuing bonds—the understanding that we retain bonds with the people we’ve lost—in our memories and in our biography. Parts of my father are in me. Parts of my mother are in me. My sister and I joke about that all the time. They’re part of our biography, part of our memory. We constantly have connections with them. And that’s a big shift from the Freudian paradigm, which said you had to withdraw emotional energy from the deceased and reinvest it in others.Grief, when we let it move through us, can lead somewhere unexpected. Some people, despite the pain of grief, or sometimes because of it, grow in ways they never anticipated. They gain new insights and new strengths. Their spirituality becomes more complicated. I’ve spent over 50 years in this field, and I always tell people: “When you ask, ‘Why did God allow this to happen?’ I knew the answer to that 50 years ago. I don’t know it now.” But my theology has grown. My compassion has grown. Fifty years in the field has made me confused on a much higher level.
The Gifts of Trauma is a weekly podcast that features personal stories of trauma, transformation, healing, and the gifts revealed on the path to authenticity. Listen to the full conversation, and if you like it, please subscribe, rate, review, and share.
Editor’s Note: This post is comprised of edited excerpts drawn from The Gifts of Trauma podcast transcript. Selected passages have been carefully woven together to create a cohesive narrative that speaks in the guests’ voices and faithfully represents their perspectives. – Rosemary Davies-Janes
