In this deeply moving episode we talked with Myra Sack about the love, loss, and legacy of her daughter, Havi. Diagnosed with Tay-Sachs disease at just 15 months old, Havi's life was brief but profoundly impactful. Myra shares how she and her family navigated the unbearable reality of their daughter's illness and death, including transforming their Shabbat ritual into "Shabbirthdays" held every Friday to celebrate Havi's life.
Myra reflects on the arduous medical rollercoaster that led to Havi's Tay-Sachs diagnosis, the challenges of navigating a world that struggles to support the bereaved, and how she and her family find solace in sharing Havi's legacy with others. She also discusses her memoir, Fifty-Seven Fridays, and how she started E-Motion, Inc. an organization that harnesses movement, community, and ritual to support those who are grieving.
We discuss:
The ongoing presence of grief, particularly during milestone moments and everyday life.
How Myra and her husband Matt created the Shabbirthday ritual to honor Havi each week.
How Havi continues to teach others even after her death.
The impact of isolation for grieving families and the struggle of navigating social norms post-diagnosis.
Finding ways to stay connected to Havi through rituals, storytelling, and shared memories.
Myra's journey into grief education and the founding of E-Motion, which supports people who are grieving through movement and community.
The need for more grief-informed communities.
Resources & Links:
Fifty-Seven Fridays by Myra Sack
What Happened to You? By Bruce D. Perry & Oprah Winfrey
Connect With Us: Have thoughts on this episode? We'd love to hear from you! Email us at griefoutloud@dougy.org or visit our website for more resources and past episodes.
What does it mean to live with an incurable illness while navigating grief, time, and the complexity of human connection? In this episode of Grief Out Loud, we sit down with Caroline Catlin—writer, artist, and grief care worker—to explore her experience of living with an incurable brain cancer diagnosis.
Caroline shares how her relationship with cancer has evolved over the past six years, from the early days of fighting for a diagnosis to the ongoing reality of regular scans and the uncertainty of what’s next. She speaks candidly about anticipatory grief, the way mortality shapes her daily life, and how her work in end-of-life photography and peer grief support informs her perspective on loss.
We also discuss:
The impact of a life-altering diagnosis on friendships and relationships
How people can better support those living with illness
The intersection of living with illness and supporting grieving children
The unique grief of knowing time is limited—and learning to live within it
Caroline also shares about her grief writing workshops, her creative process, and how gardening has become a grounding practice for her.
Connect with Caroline:
Website: carolinecatlin.com
Instagram: @mybodyofwater
Grief writing workshops: Sliding scale, open to all
For more resources and to connect with Grief Out Loud, visit Dougy Center.
In this episode of Grief Out Loud, we welcome back Carla Fernandez, co-founder of The Dinner Party, to talk about her new book, Renegade Grief, in which she explores the question: "Now what? What are we supposed to do after someone dies?" Carla reflects on the death of her father, the unconventional paths she’s taken to process her grief, and how The Dinner Party came together from a desire to create non-traditional spaces for young adults navigating loss.
In this conversation we delve into the dominant narratives around grief — and how the few that do exist may not fit for most of us. From potluck meals to altar building, Carla shares creative ways people can honor their grief and build community at the same time.
We discuss:
Carla Fernandez is the co-founder of The Dinner Party, a community-driven organization that brings together grieving young adults for potluck dinners and meaningful conversations about life after loss. Her new book, Renegade Grief, is a practical and heartfelt guide to building personal rituals and support networks that meet you where you are — not where society says you should be.