Havi Goldstein died at 2 years old from Tay-Sachs, a rare, fatal, neurodegenerative genetic disorder. Her parents, Myra Sack and Matt Goldstein, shared their story with me a couple of years ago.
Now, they want to spare families the same pain. Myra’s new memoir, “Fifty-seven Fridays,” offers a blueprint for this exquisite grief that builds off the work of her new nonprofit, E-Motion, which offers grief literacy curricula for companies and movement workshops for grievers. (She was a former star soccer player.) Matt is now the CEO of JScreen, a national nonprofit offering affordable genetic testing and counseling. In honor of Tay-Sachs Awareness Month, I caught up with Myra about her latest work—and how her family is doing after the loss of Havi.
Tell me about your new memoir.
“Fifty-seven Fridays” just came out in April, and it’s really our family’s story of love and loss. It chronicles Havi’s life and death, and all of our support and the rituals that sustained us. Matt and I decided that we wanted to put the memoir into the world for a few reasons. One, we wanted to dissolve this intimacy barrier that often exists for grieving people who are just so desperate to read something that is real and raw and authentic—at least, I know we were.
Secondly, we wanted people to know that there’s a way that we can show up for each other through the most traumatic times. We got so lucky with our family and extended friends, and we wanted that blueprint to exist in the world. Thirdly, it’s really about raising awareness around genetic testing and the work that JScreen does to make genetic testing simple, accessible and affordable to ensure that no family ever goes through what we did.
Could you explain the concept of “fifty-seven” Fridays?
Related
We honored Havi every Friday with these birthdays, and they would include only the people who saw her as sacred and could be in her presence in a way that made her feel loved and seen, and not scared or sick. We had blueberries, because that was her favorite fruit. We had challah, typically from Rosenfeld’s in Newton. We didn’t pretend our pain away. It was filled with a lot of heartache and a lot of joy. That was our way of being with this unity of opposites, this capacity to hold both the pain and the beauty at the same time.
What do you hope readers take away from the book? What are its lessons?
In our society, we live in fear of being in pain, fear of being sad, fear of feeling too much. This book is about what happens when, instead of being afraid of those big feelings and the uncertainty, you turn toward them instead. There is an incredible sense of awe, wonder and almost timelessness that can start to unfold when we do turn toward those hard, heavy things.
The second is the power of community to sustain us, and the ways in which I think community sometimes gets let off the hook in grief. We talk about grief as being so individual and so unique, which it is. But community cohesion is the antidote to isolation and loneliness, and grieving people are so vulnerable to being lonely.
The third is that we can move with our grief instead of moving on from grief, and that moving with grief looks like a big, full, messy, integrated life, and when we do that, we can experience incredible joy and presence and love while also experiencing the depth of our pain. It really enhances our capacity to exist here in the land of the living.
I remember one publisher who rejected the book. Marketing and sales said, “Books about children who die don’t sell. We can’t make this work.” Books about children who die reveal everything about living. And there are so many people who are living with loss, who need people to turn to and pages to open.
We hear a lot about community—but how do you find that community and make sure it’s the right community, and then protect yourself from the disappointment of maybe not getting what you need?
There’s such a lack of literacy, of understanding, of infrastructure. People are at a loss for how to show up. My nonprofit is all about: How do we embed grief literacy in as many spaces, institutions and organizations as we possibly can to start making the language of loss more accessible for people, so that when a grieving person needs to go to work, they can turn to their colleague next to them, and that colleague has some capacity to respond or prompt in a way that isn’t harmful.
Practically, there is showing up on a spectrum. On one end, there is what I call “authentic contact.” This looks like reaching out via a text message, an email, putting a letter in the mail, being present from afar, but doing it in a consistent and authentic way. This could be as simple as thinking of a text three, five or 12 years after someone has died. It could also be sending someone purple flowers because they know that the person who died loved purple. It’s matching a level of thoughtfulness with a very basic outreach that is authentic and consistent.
On the other end of this spectrum is emotional dwelling: inhabiting the same emotional space as someone and matching their emotional needs and sometimes being in physical proximity—jumping into the deep end with someone. And I think that requires a level of logistical capacity in one’s life, but also it requires someone to be in such contact with their own pain. They can try to imagine. Instead of saying, “I can’t imagine,” they say something like, “When I try to imagine, I’m devastated for you, and I’m here.” That’s so different from “I can’t imagine,” which creates so much distance.
I hated when people said that when my mom died. It makes you feel so different. What is helpful and what wasn’t helpful for you? I know people do struggle with how to be supportive and what to say.
My siblings, every Wednesday, the day Havi died, at 9:04, which was the time of her death, they still, three-and-a-half years later, send a text message with a purple heart, and sometimes photos. It’s people who order coffee or tea and put down Havi’s name so the barista or the server says it out loud, and they send a text message with a picture of a receipt that has her name.
Or my 7-year-old niece, who puts a birthday card for Havi in the mail, so when Matt and I go out to the mailbox, we see “Havi Goldstein” on an envelope, which is all we want. Those acts show us that Havi still exists for them in their life, that she matters and that she’s on their mind.
Things that aren’t helpful create space; they run the risk of making us feel like we are the problem. I’ve had people say: “At least you’re young and can have other children.” Generally, anything that starts with “at least” isn’t helpful. Or people who don’t name her, don’t bring her up. I think when people avoid her existence, that is so painful.
Tell me about E-Motion.
We’re on a mission to change the way the world interacts with grieving people, and we do that in two ways. One, we run programs for primary grievers in the form of what we call “movement communities.” They’re eight-to-10 week, movement-based, non-clinical therapeutic experiences that people can join. The movement is walking, running, swimming, biking. It doesn’t matter what it is, but these groups meet in places that aren’t typically the places where grief groups meet. So, in Boston, the group meets at Heartbreak Hill Running Company. In Belfast, Maine, there’s a group that meets at a YMCA. They follow gently guided grief curricula and use movement as the regulating component of the experience, so it’s not aided talk therapy.
Movement—walking, running, swimming, biking—evokes that same patterned, repetitive, rhythmic activity, and it softens all of the hard, heavy, traumatic thoughts, feelings that we’re having, and buffers them a little bit. Also, obviously, the health benefits of movement are tremendous, and it’s often easier to talk with someone when you’re parallel to them, rather than in front of each other.
We also run grief literacy and education training programs for a whole host of organizations and companies who say: “We want to be better at this.” We work with a diverse group of organizations.
Catch me up on your family.
Matt has had an inspiring transformation. He’s now the CEO of JScreen, and his mission is to make sure that everyone, everywhere, is screened. It’s the most beautiful thing. So, I think on a personal note, seeing and feeling his energy exist in the world is really inspiring and reassuring. Kaia is 4. She’s in preschool and is thriving and fun and full of love and sassy and dynamic and just the best. Ezra was born Aug. 13, 2022, so he just turned 2, and he is all those same things and just totally delicious and fills us up.
How has grief changed how you parent?
There are so many moments in a day that I see as beyond sacred, and those moments are so mundane. Sometimes, I am moved to tears at just the simplest acts of sibling love. As a parent, I think I am so much more present than I was during Havi’s first year of life, when we thought she was healthy. I can keep the small things in perspective, because the biggest, worst thing happened. The truth is, I am just too acutely aware of how fragile life is.
