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This notion that we have to sort of keep at bay or keep at a distance things that are hard or heavy and that that will somehow help us to be whole is fundamentally not true.
Hi everyone, welcome back to Radiohead Space.
Grief is something we will all experience at some point in our lives and we're never really prepared for it I experienced this a couple of years ago when my abuelita passed away so I started looking for some resources to help and stumbled on 57 Fridays by Myra Sack.
It's a book about the loss of her daughter.
It was very real and intellectual and something I think everyone can benefit from, so I brought her on to help us understand how we can deal with grief with more ease.
I really hope you enjoy this conversation.
Hi Myra. I'm Rosie.
How are you? Hi Rosie.
I'm good. It's so nice to meet you.
So I I'm very familiar with with your work and your book 57 Fridays, and you know so many people have these edges that they rub up against when we're talking about grief and loss, and I really feel like, the way that you've talked about it is so inspiring and admirable.
And I was I was hoping, you know, if we could give the listeners just a little bit of background on you, and really what inspired you to write this really incredible book.
Thank you. And your voice is legendary.
And so it's nice to be able to, to move with you and now to be to be face to face.
So I am my my background is that my kitchen table education for lack of a better word was that I grew up outside of Philadelphia, with school service and sports really as the cornerstone to childhood.
And then I started my career in community based work always with sport at the at the center of how to ensure access for people who didn't have it because of their circumstances.
And then December 17, 2019, my first daughter, Javi, was diagnosed with a fatal neurodegenerative disease, which meant that we got a death sentence for our, at the time, 15 -month -old child.
And so when she was 15 months old, we learned she'd have 12 to 18 months to live.
And the question becomes, what do you do with that?
How do we move with that?
how do we exist, how do we occupy spaces that used to feel safe and familiar and comfortable and now don't and that inspired my writing and inspired my work that is now grounded in how we move with grief and loss and it inspires how I see the world and communities now.
I'm sorry for your loss and I'm sure you hear this all the time, you know, from people that never had your experience like I can't even imagine.
I'm curious and if it's okay I'm like can I ask you a personal question?
Like how do you how should one have this conversation with somebody that is grieving?
Like do you think it's helpful to ask people how do you want to be communicated with, because in my experience with grieving and losing people, and I went through a pretty, very open and honest about my experience with my fertility journey, I went through three different miscarriages, and then soon after, a year and a half later, losing my grandmother who was like my mother, it just was there was a lot of grieving.
And what I found interesting was how certain people showed up in that experience or didn't.
I'm curious. In your experience, you and your husband with losing Javi, I'm sure that maybe there were people in your life that didn't know how to communicate with you.
So I guess how do we have a conversation with the person that's in this grieving process?
How do we support them?
The way I think about support is first, is first really truly honoring and believing in the immensity of the loss and trusting when someone says that they're shattered or that their life has changed or that they can't get out of bed or that they can't come to dinner with young parents who have young children because it's just too painful.
And starting from a place of belief allows us to be as supporters real companions as opposed to come into a support role from a perspective of pity.
And pity, as Brené Brown says, is sort of the near enemy to compassion.
And the difference in language is small but powerful.
So, for an example, I'm about you has a little bit of pity versus something like, I'm with you always.
And that is this notion of being with and not putting a time stamp on that offer.
And then the next is picking up real cues on what the greever is sharing about how they want to honor their loss.
Do they talk about person in which case like talk about them back ask more questions what was your favorite moment with your grandma what do you miss about her maybe there's an opportunity for laughter evoked but a real genuine interest in their person in their loss that reflects back what they're sharing with with you and then in our case we really leaned into the power of ritual to honor our grief and and when Javi was diagnosed, we came up with this crazy idea to combine Friday nights, which we also celebrate Shabbat on Friday, so sort of create Javi's birthday within every Friday and call
them Shabirthdays. So combine this idea of birthdays with Shabbat, because as a mom I couldn't wrap my head or heart around the idea that she was only going to have two birthdays on this earth.
So So we got 57 of them and that ritual became a place where some people could honor the pain and the love and sit with her and not see her as scary but see her as sacred.
And could sing and dance and laugh in one moment and then be filled with tears another moment and that sort of full inhabitation of grief is ultimately what it takes to accompany someone who is shattered.
And we all will be or have experienced that sense of loss.
That explains why you named the the book 57 Fridays.
Can you share with us the people that perhaps weren't as supportive about you doing this ritual?
Three days after we got Javi's diagnosis, we were in this apocalyptic moment.
We were told to go see a rabbi because we had just had this life -altering, life -disrupting moment and we went walked into her office and then told her this idea that we had of Shi 'a birthdays and we were gonna celebrate our first one and she looked at us and said I don't think you should do that.
I think that that will make it really hard to live on Fridays if you transform Shabbat in this way after Javi dies and she was wrong.
Fortunately my husband Matt and I had the conviction to say respectfully that's bullshit and we're going to celebrate the shit out of her anyway.
And what I now appreciate is that her response wasn't malicious.
It was fear -based, which is so often the case that even faith leaders sometimes come at these situations from a place of fear as opposed to a place of awe and presence and possibility.
And when we believe that we can exist with this kind unity of opposites, that we can exist in the deepest pain and the biggest joy, that that expands our capacity to exist in this world and to give and to be of service as opposed to the opposite which can feel limiting and minimizing.
It's interesting because right after my grandmother passed away, I was given a picture of her in a frame, and so it was this beautiful frame with beautiful picture of her in it and I had set it next to my tea station and somebody that was at my house said, I don't know that that's a good idea you're gonna see it every day it might make you sad or you know maybe maybe consider putting it somewhere else like in your living room but I didn't because I was like no but I want to see her every day I want to talk to her I want say hello to her every morning and it in the moment in in in the beginning
it was quite painful yeah it was hard you know every morning I'd wake up and it's your picture and I'm like alright she's not here anymore all right she's not here anymore but she is here right but there are still moments when I wake up and I I feel the tenderness inside and I I do honor that I'm curious even now it's been many years later do you still encounter those those waves and those moments.
First of all, that's so beautiful.
What's your grandma's name?
Her name is Justa, so it means justice in English.
Okay now when I drink tea which I have next to me I'll think of Okay, so first this notion that we have to sort of keep at bay or keep at a distance things that are hard or heavy.
And that will somehow help us to be whole is fundamentally not true.
And the way we can feel that in our body is if we imagined trying to hold two weights, even five -pound weights away from our bodies for a minute without, you know, bending our elbows or without any kind of break.
We would start to feel tension in our shoulders.
Maybe that tension would move down to our back or our hamstring.
And the truth is is that once we bring those weights closer to us, then we learn that that energy that we're trying to resist is looking for places to be stored, and it often gets stored in the forms of ache, illness, disease, stress.
And so this notion of integration, how do we integrate what is hard, what is a loss into our lives, so that we can learn to move with them, that ultimately softens our grief, and that's a gift that we can give to ourselves and others.
As far as shaburt days when we started them, it was a constant act of trying to equip myself with the most love and education that I could around how to be with something that is so unnatural and so painful and so cruel to watch. And so So the way that I endured that, was of course was through the Shabbat days was also through movement and the power of running and walking.
And Dr. Bruce Perry, it's really Dr. Bruce Perry's research that shows sort of this patterned repetitive rhythmic activity that we get when we run, walk, dance, swim, tap into that rhythm, That that is the strongest somatosensory memory we have because it was that same patterned repetitive rhythmic activity when we were in our mother's womb listening to her heartbeat.
And so once I could understand why movement was so inherently regulating I used it a lot.
And so that looked like running with Matt, walks with Javi, and I think the final way was that we did lean on community and we did not let them off the hook.
We did make them get educated on grief and loss.
And what does that look like for the people that are listening?
Because I think this is such an important key, and I love that you talk about this.
It's like how do you broach that topic with people in your Yeah, for us that looked like making Dr. Joanne Quachator's book, Bearing the Unbearable, making that required reading for anyone who was going to come into our orbit.
And we knew if people read it and learned the language.
And the burden should not be on the greever to ask people to get educated.
And yet, I do think if we have the capacity to share those kinds of resources and suggestions with others, it can make a world of difference.
That is so helpful and I'm with you on the onus, shouldn't be on the greever, but unfortunately you're absolutely right.
I think that having resources like that or even conversations like this, somebody could listening to this right now going through a really difficult moment and they could send this conversation to you know some somebody in in their community.
Can I ask you I love the I'm calling it boundaries that you and Matt created around your your space um can you talk little bit more about why that was important for you.
Those boundaries were important because it tooks and takes so much energy and capacity to put two feet on the ground every day when someone's experiencing a kind of loss that upends their life.
And so those boundaries really became our lifeline.
they were the ways in which we parented Javi and the way we stood up for her and advocated for her, that was and still is, as a parent, sort of the most important thing I think we can do for for our children.
I'm so grateful again, that you're sharing this with us.
You both have two children, from what I understand, a boy and a girl.
You know, looking at it from the perspective of resilience, I mean, you, your family, are this sort of archetype of resilience and being able to navigate this and then create something that's helping so many people cope, and grieve, and go through this process.
Because where you are now with Matt, with your two kids, somebody that's maybe listening to this thinking, how do you even navigate this?
Are you able to move forward?
So, can you speak to that a little bit and maybe just give us a little update as to where you and your family are now.
Yeah, of course. So our our two living children are Kyah and Ezra and Kyah is four and a half now and Ezra is just about two and a half.
And they embody love and all things that are just good and beautiful and their existence gives us tremendous joy every day.
And I think it's really because they are them and also because we have a full appreciation of the fragility of life and that we don't and can't take for granted moments in childhood.
We don't just get those.
Those are gifts every day.
And and so in that way I think Javi's presence, her death, the loss, all the work has just deepened our appreciation for what we have and who we have. And so our our joy is sort of a combination of gratitude, of meaning, and of love.
Thank you so much for everything that you do, everything that you continue to do, and may Havi's life continue to teach us and guide us in many ways.
Where can people go to connect with you and to learn more?
Thank you Rosie. My work can be found at Emotion our website is www .emotion -mc which stands for movementcommunities .org.
And my book which has is memoir but then has an instructive synthesis in the back that sort of gets at some of these more general concepts around grief and loss is 57 Fridays, and that can be found anywhere you buy books.
And I'm so grateful for this time with you, Rosie, for this platform, for you trusting me with your incredible community of listeners.
And I hope to continue the conversation in some way over time.
Yes, same. Thank you.
And thank you for being here.
And I hope this is the first of many more conversations.
