Lisa Keefauver, MSW is a grief activist, therapist, educator, podcast host, and author of Grief is a Sneaky Bitch: An Uncensored Guide to Navigating Loss. Lisa’s wisdom and understanding of grief is also embodied from her personal losses including the death of her husband Eric from Brain Cancer in 2011 and her own diagnosis of Triple Positive Breast Cancer in 2023.
The permission to be with, instead of struggling against, our truest experiences is revelatory and transformative yet it gets so little notice or credit because it often seems too simple, subtle, and passive.
EW: Death is often considered taboo. Was there a defining moment in your life that ignited your passion to discuss and address end-of-life experiences openly?
Lisa: I was a clinical social worker, trained in narrative therapy I’d spent nearly a decade working in foster care, adoption, and crisis intervention. I’d been working with individuals and communities in deep grief and yet when I looked around at the descriptions and stories of grief in my field, in the media, in our country, I suspected they were flat, and limited, and misleading.
But it wasn’t until I went through my own year of hell that I came to truly understand the problem with our collective story of grief. After a year of watching my previously kind, and wise and athletic young husband turn into someone neither he nor I recognized, after a year of asking questions of doctors and getting no answers, I found myself laying with my 44 year-old husband as he died in my arms, Just 2.5 weeks after discovering it had been a grapefruit-sized brain tumor all along. After Eric took his last breath, I somehow took my first breath without him, stood up, went home, and told our 7-year-old daughter that her dad was dead.
It wasn’t until I returned to my role as Clinical Director two weeks later, that I truly began to discover how incomplete our story of grief was and how much harm that was causing me, my daughter, my clients, my friends, and well, all of us.
As a widow I knew what it was like to feel unseen. As a therapist, I’d become a compassionate listener. As a director and co-founder of non-profits, I’d learned to be an advocate, an educator, a speaker and a writer. I knew I had some skills AND I knew I didn’t want anyone else to suffer unnecessarily the way my clients had. The way my daughter and I had. So, I set out to become a grief activist.
EW: Given your unique background, how does your work intersect with the end-of-life and grief conversation — and please give us a preview of what you’re talking about on the End Well stage.
Humans are storytellers, interpreting beings, and my training as a Social Worker in Narrative Therapy deeply shapes how I engage in the storying of my own life, the conversations and collaborations I have with friends, family, clients, podcast guests, and even with audiences from the stage. How we talk, or don’t talk, about the complexity and vulnerability of death, dying, illness, grief, and loss impact the ways in which we experience them. I’ve come to see the healing power of naming and contextualizing the smallest truth, and how that can reduce the unnecessary suffering we experience in these seasons of our lives. The permission to be with, instead of struggling against, our truest experiences is revelatory and transformative yet it gets so little notice or credit because it often seems too simple, subtle, and passive.
Answering the question, “how do we make space for grief and joy?”, I will offer a very personal (and sometimes humorous) story of learning to be present to it all. Navigating Breast Cancer treatment over the past two years as a widow and someone in the public eye, I re-discovered the power of naming the both/and of life – paying particular attention to the new losses that come with a cancer diagnosis, the new (and old) grief it surfaces, and the little and big moments of joy that I allowed myself to discover along the way.
EW: Cultures around the world have different practices and beliefs surrounding death. How has your cultural background influenced your perspective on the end of life and grief?
Lisa: In a way, this notion of the cultural context of grief has been at the center of my exploration as a grief activist. Much of our unnecessary suffering in grief is a result of the implicit and explicit messages, behaviors, and customs that tell and reinforce a limited and misleading story of grief – one that doesn’t match the very real, messy non-linear ways that loss impacts our emotional, cognitive, physical, relational, and spiritual well-being.
In the West, in our modern, capitalistic, and mostly secular society, we’ve created a culture, with systems and institutions that values and rewards things like productivity over process, simplicity over complexity, destinations over journeys, stoicism over vulnerability, and the list goes on. Can you see how neatly those values reinforce this narrow story of grief? Instead of us questioning our collective values, culture, and systems, we question ourselves.
EW: In your experience, what is the most significant societal norm or belief about death and dying that needs to be challenged or redefined?
Re: Death and Dying – The language often used during illness and dying around being a fighter (e.g. cancer warrior, battling the disease) and the language of defeat and win/loss when someone dies (e.g. lost his battle with cancer), reinforces a problematic narrative that death is a sign of failure (physical and moral), when death is something that will happen to 100% of us. It often puts undue pressure on the dying to suffer unnecessarily because to stop treatment represents weakness or fear they will disappoint their families. These narratives also often pressure family members (and even those in the medical community) to focus on the quantity of a person’s life rather than the quality of both their life and their death.
Re: Grief – Though there are dozens of problematic myths that contribute to the unnecessary suffering in grief. One of the most profoundly misguided beliefs is that grief is only an emotional response to the death of someone when we love. This limited view of grief ignores the cognitive, physical, relational and spiritual impact of loss. The lack of acknowledgment that grief is a normal response to a wide range of losses from things like anticipatory grief to catastrophic injuries, chronic illness, maturational changes, trauma, and even the losses we choose, results in a tremendous amount of disenfranchised grief. The denial and invalidation (which we do to ourselves and others) of the expansiveness and pervasiveness of grief in our lives results in prolonged and unnecessary suffering.
EW: How do you hope various professions and disciplines can come together to create a more human-centered approach to end-of-life care and experiences?
I think it starts with a commitment to hold compassion and deep curiosity about our individual lived experiences. It also requires collective agreement to push back at some of the systems and policies that have become deeply entrenched in end-of-life care and experiences including the medicalization of dying. I am hopeful as I’m already seeing (and am grateful to be a part of) interdisciplinary conversations (e.g. storytellers, palliative providers, grievers and people who have or do live with illness) that are inviting us all to co-create a more human-centered approach to the very natural experience of dying and death.
EW: Is there a book, movie, piece of art, or another form of media that profoundly impacted your views on mortality?
Lisa: Though I’m grateful for so many authors, filmmakers, choreographers, painters, and sculptures for their various invitations to consider mortality, the one that comes up for me time and time again when I’m asked this question is Mary Oliver’s poem, The Summer Day. Her invocation of the natural world and invitation to pay attention and be present to even the smallest and subtlest moments have led to a now decades long practice of beauty walks – a mindfulness practice that has been at the center of my healing. I’m not sure there is a more powerful invitation to live fully until you die than the one with which she closes her poem – “Tell me, what is it you plan to do with your own wild and precious life?”
EW: Fast forward a decade. If the objectives of the End Well Project are realized, how do you envision society’s attitude and practices surrounding the end of life experience?
We will see both represented in media, institutions, and in our communities a much more diverse, open, and accepting set of language and practices around caring for, attending to, and accompanying the dying and the grievers left in the wake of the loss.
Lisa Keefauver will speak at End Well 2024 on November 22, 2024. Join live or virtually!