Myra Sack’s life changed when her older daughter, Havi, was diagnosed with a fatal neurodegenerative disease in December 2019. She chronicled Havi and her family’s journey in her book, Fifty-Seven Fridays: Losing Our Daughter Finding Our Way, and also founded E-Motion, Inc. a nonprofit organization created to support community, movement and ritual to enhance coping and resilience.
Rather than “move-on,” consider “moving with” as a more integrated and ultimately healthier state of existence.
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?
MS: When our baby daughter, Havi, was diagnosed with Tay-Sachs disease on December 17, 2019, our world was up-ended. We were told she’d have a year or so to live. In that moment of sheer devastation and other-worldly anguish, I couldn’t wrap my head or heart around the idea that my daughter would only have two birthdays on this earth. To celebrate her more frequently, Matt and I “came to” the idea of combining “Shabbat” (the sabbath) with Havi’s “birthday” and we created a ritual called Shabbirthday. We honored and celebrated Havi every Friday. We didn’t pretend our pain away; rather we ensured that Shabbirthdays were a time to embrace presence as fiercely as we could–to squeeze every ounce of life and joy from our short time together.
When we shared this life-sustaining concept with a Rabbi, she discouraged us from doing this, afraid that “Shabbirthdays” would make Fridays too painful for us after Havi died. It was in this moment that I knew I had to be part of a grief-education and end-of-life movement. We got 57 Fridays with our daughter after her diagnosis, and to this day, we honor Shabbirthdays as sacred and sustaining.
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.
MS: My work at E-Motion, Inc. is about making community a right for grieving people. Our approach is grounded in bereavement-science, lived experience and spirituality. On the End Well stage, my husband Matt and I will talk about the healing power of movement, community, and ritual, and how the synergy of these elements sustain a marriage, a family, and a life through heart-breaking loss. Our story offers a front-row seat to our family’s extraordinary love and extraordinary grief, from Havi’s diagnosis through her death, and into the present. Our story is textured by “grief lessons,” that gently lead each of us to reimagine grief so that it makes room for life. We lived these “lessons” before we named them. They emerged organically over time, implicit in what we did to survive.
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?
MS: From the earliest time I can remember, Tikkun Olam, the Hebrew phrase meaning “repair of the world,” was an ever-present thread woven throughout my Reconstructionist-Conservative Jewish education. My family approached Judaism and life with deep devotion to the past and a passion for and insistence on relating it to the present. I wasn’t sure back then exactly what Judaism meant to me, but I knew that the teachings aligned with what I felt in my heart about community: It is not only a place, it is also an evolving, growing web of connection; a learning and shared experience that allows us to live life with a fuller sense of love, empathy and purpose. That lens on life has had a profound impact on the way I approach grief work – that it is ultimately about creating enduring communities of care that each of us can trust to nourish us as we navigate the ambiguity, uncertainty, and mortality that we all face.
EW: In your experience, what is the most significant societal norm or belief about death and dying that needs to be challenged or redefined?
MS: That we need to “move on” from a death experience in order to live fully; that if we don’t “move on” we are somehow “stuck” or too focused on the past and missing out on what this life offers. Rather than “move-on,” consider “moving with” as a more integrated and ultimately healthier state of existence. Moving with implies integration, and integration is all about making space for both the anguish and devastation that death can bring, and also creating new memories and experiences that include the person who is no longer in the land of the living.
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?
MS: Death education in primary and secondary school is an important place to start. I hope that more and more school districts introduce age appropriate language and activities that enable young people to talk about and exist with the idea that we are all mortal. Death education could be integrated into emotional-literacy curricula in a way that normalizes conversations about end-of-life and better equips all of us to move with death and dying in a fuller, less fear-based way. Ensuring loss literacy should be part of all education – from primary school through high school and beyond. Ensure that medical and all human service professionals are competent in the language of loss. Ultimately, this is about democratizing coping so that all of us – whether we are teachers, preachers, doctors, lawyers, full-time parents or caregivers – have the framework we need to show up for each other in times of uncertainty and threshold moments.
EW: Is there a book, movie, piece of art, or another form of media that profoundly impacted your views on mortality?
MS: John O’Donohue’s Book, Bless the Space Between Us, had, and continues to have, a profound impact on my views of mortality. In particular, his elucidation of “threshold moments” gives me a deep appreciation for presence and intention and the connection between the two, and the ways in which we can move through our lives with an understanding of “thresholds” as opportunities for the deepest, fullest work toward transformation and transfiguration. O’Donohue writes: “A threshold is not a simple boundary; it is a frontier that divides two different territories, rhythms and atmospheres. Indeed, it is a lovely testimony to the fullness and integrity of an experience or a stage of life that it intensifies toward the end into a real frontier that cannot be crossed without the heart being passionately engaged and woken up.”
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?
MS: I imagine a world in which we see end-of-life work as requisite to living fully embodied lives while we are here on this earth. I imagine a societal stance that values open, honest, vulnerable and community-oriented conversations about death and dying. I imagine a world in which people can choose where, and with whom, they want to spend their precious moments on this earth – and that there is no judgment about how those moments are experienced.
Myra Sack and her husband Matthew Goldstein, MD will speak at End Well 2024 on November 22, 2024. Join live or virtually!
Myra Sack is the author of “Fifty-Seven Fridays: Losing Our Daughter Finding Our Way,” and founder of E-Motion, Inc. a nonprofit organization created to support community, movement and ritual to enhance coping and resilience. Myra’s life changed when her older daughter, Havi, was diagnosed with a fatal neurodegenerative disease in December 2019. Havi died on January 20, 2021 of Tay-Sachs disease. E-Motion evolved out of a new way of living with the most difficult reality, blending Myra’s lived experience and knowledge as a certified Compassionate Bereavement Care provider with her lifelong identity as an athlete and career in social impact. Myra holds an MBA in Social Impact from Boston University, and graduated with a B.A. cum laude from Dartmouth College, where she captained the women’s soccer team and earned All-America honors. She has devoted over a dozen years to youth-serving nonprofits, including serving as Chief Program and Strategy Officer at Squashbusters, Inc. and leading program development across Latin America for Soccer Without Borders. A writer, speaker, and activist, Myra serves on the Board of the Courageous Parents Network and lives in Boston, MA with her husband Matt, their second daughter, Kaia, and son Ezra. Her writing has appeared in numerous national outlets including the Boston Globe Spotlight, Today.com, Hadassah Magazine, and Upworthy.