ENDLESS LOVE: TURNING GRIEF INTO MEANING AND PREVENTION with Myra Sack & Dr. Matt Goldstein

[00:00:10][music] >> Hello everyone. This is another freedom to feel conversation and my guests today are Myra Sack and Dr. Matt Goldstein.

[00:00:33]Myra, she is the author of 57 Fridays Fridays losing our daughter finding our way. Founder of Emotion a nonprofit organization created to support community movement in Rachel to enhance coping and resilience. A certified compassionate bereavement care provider.

[00:00:53]She's a writer, a speaker and an activist serving at the board of the courageous parents network. Myra is married to Dr. Matt Goldstein, CEO of jscreen.org.

[00:01:06]So Dr. Matt Goldstein is a dedicated physician, scientist and entrepreneur with a passion for advancing genetic research. As the CEO of JScreen, he focuses on providing accessible life-saving genetic testing to empower individuals with critical health insights.

[00:01:26]JScreen is a national nonprofit public health initiative dedicated to preventing genetic disease.

[00:01:33]So this is my my brief introduction to both of you and your company. But the question of the food will be at the end. The question that I love asking everyone to open the conversation is how do you introduce yourself? Starting with you, Myra. Who are you in this very moment?

[00:01:50]>> I am a mother. I'm a um a partner. I am a sister and a daughter and uh a friend. I take friendship very seriously. And um I'm an activist now for um changing the way people take care of and show up for grieving people.

[00:02:17]Yeah, thank you.

[00:02:19]>> Matt, how would you introduce yourself?

[00:02:22]Who is Matt?

[00:02:22]>> Mhm.

[00:02:24]Such a beautiful question.

[00:02:26]Um I think a father, a spouse, Myra's very very uh very lucky to be Myra's husband.

[00:02:35]Um uh I think I'm curious and I want to make the world better.

[00:02:44]>> Wow. Yeah.

[00:02:45]I love the way uh Myra you talked about friendship and how you take it that seriously. And then hearing you Matt say, "Yes, like being a partner." So, I see that the the truth in that expression. Living lived in living expression. Both of you coming together and doing this work.

[00:03:04]Uh and then I can't help but think about Set up from what's your name? Javi? I think about heaven.

[00:03:10]Javi Javi Javi uh Javi I wanted >> Javi Javi >> Javi Javi Javi So, I thought about heaven for some reason. I came to me. So, I think about her too and her contribution to the work that has been done here.

[00:03:27]It's very clear to me that we all come here with a purpose and it seems to me like that was it. Sometimes very we come here very briefly, but we leave profound profound impact and message.

[00:03:40]And that's what I felt when I I think was her energy in the sense.

[00:03:45]Uh so, I can't help it. Um I will bring the picture here. I have um uh the book cover before we continue with the questions. And I also have J's screen on the call and a picture. Uh Oh, it didn't come through. Sometimes it doesn't. I'll ask my team to have it here. So, I apologize for that.

[00:04:06]It didn't come through.

[00:04:08]Okay, Riverside. It don't work every time, just like life. Never perfect.

[00:04:13]So, the the question before I dive into the guided questions, how do you make sense of suffering? Uh why do some of us suffer more than other people in order to learn certain lessons or to become more, let's say, to carry a life that is worth living, that's loving, that's beautiful, courageous, and and inspiring?

[00:04:36]I would love to hear that answer from both of you, whoever feels like speaking first.

[00:04:42]>> Why don't you start, Bev?

[00:04:45]>> Okay. Um I mean, what comes immediately to mind is the the Buddhist formula um of suffering is pain times resistance. And so, I think this idea of um that suffering is actually a function of how much we are resisting pain in our lives. And so, if we are not resistant, if we practice turning towards, um we can never avoid pain, but we can certainly minimize suffering.

[00:05:18]And so, I think that has been a guiding framework for us as we experienced Tavi's diagnosis and eventual death.

[00:05:30]Um was what we could control was the capacity to be with the hardest thing as opposed to resist it.

[00:05:39]>> Matt, I'd love to hear from you.

[00:05:42]>> I think that for a long time, I thought that if I did all of the right things, I could escape suffering or I could avoid suffering.

[00:05:54]Um and obviously Hope's diagnosis and death shattered that conception.

[00:06:03]And as we've navigated through the world during her short life and and since then, it is so clear that so many of us encounter suffering and tragedy and challenge at some point in our lives.

[00:06:21]Some earlier, some later.

[00:06:25]But it But it's really the the great universal. I mean, everyone, all of us encounter that at some point. And I think it's the rare person who doesn't actually. Maybe truly be exception.

[00:06:39]And as Myra said, I I think that being counter with that suffering and that pain in in many ways opened our eyes to fullness of life that I don't think we appreciated existed. You know, the the full breadth of experience top to bottom, the hardest things, the worst things, the most painful things.

[00:07:03]And those are are sort of coexisting with some of the most beautiful, full joy, and happiness, and um and beauty. So, that that coexistence I think actually expands as opposed to constricts or contracts. And maybe maybe that is partly why we experience suffering is is to recognize to help us recognize the fullness of life.

[00:07:31]>> Wow, yes. That's so beautifully said, too. And yeah, Myra, I love what you said about resistance, resisting pain.

[00:07:38]And then how that can become suffering.

[00:07:41]And then, Matt, the takeaway um painful one you just said that's truly truly um incredibly empowering is when we know the push away pushing away one part of life um when we do that we push away the other parts, too. So joy and um sorrow they they are just different parts of life, but they're still life.

[00:08:06]So yes, that's beautifully beautifully said.

[00:08:10]Were you before your um the word that Stacy had here is unimaginable, which is the word that I would use, too. That an an unimaginable personal loss.

[00:08:22]Were you both in touch with this wisdom of not resisting pain and embracing life as a whole? Is that something that you had already been somehow cultivating in your own lives?

[00:08:34]>> I I mean like speaking for myself, I don't I don't think I mean obviously not anywhere near to the extent that we we have since Hobbs' diagnosis and death.

[00:08:48]Um may maybe there were some some small threads of that that came from faith and family that were like a little bit of foundation to to build off of that, but um I think for me I mean this was like so disorienting, so completely turned the world upside down and in a way that um as you said was unimaginable and and incredibly difficult to navigate.

[00:09:20]>> Thank you for sharing that.

[00:09:22]What about you, Myra? You want to >> When you when you asked that, I I thought a little bit about the the brief conversation we had before coming on um which which is really this idea of kind of capital L love, which I I feel like I did have experience with of this growing up in a household where it was about unconditional love and what that meant.

[00:09:47]And I think that was ultimately the foundation that um enabled us, empowered us to um feel comfortable existing with such excruciating, unsettling um pain and loss. And so in that way um in that way it was uh it was almost a natural extension of what it meant to be um someone who knew how to love fully.

[00:10:23]>> Oh, wow. That's beautiful.

[00:10:27]That's beautiful.

[00:10:30]Yeah, when I think about loving humans, loving humanity, loving ourselves, and I think about loving life, too, unconditionally. Anything can happen, and we could lose a loved one, lose children. We could um we couldn't be here moments from from this interview.

[00:10:47]One of us may not be here. So, it's so unpredictable, but it's so beautiful at the same time. I'm so grateful to be in your presence and to be here conversation cuz I know most people try to avoid conversations about uh about the wholeness of life. It because it's not just death, life and life, it's one. It's just They They are hand They come hand in hand. There's no separation really between life and death. So, it's really beautiful to um that you both are open to these conversations and and to share what you have done with this excruciating pain of losing Harriet. I love her name. I can't Every [clears throat] time I I look at her name, I kind of just a giggle with so much as if Oh, yes, we did it.

[00:11:32]Uh so, uh going back to Jay's screen, when did that become the inspiration, the um a step forward in in in her legacy, like this uh impact that you'd like to make in this reality, in this world. I would love to hear the the history, the story of Jay's screen.

[00:11:52]>> Yeah, so Avi died of a disease called Tay-Sachs, which is a rare genetic disease that is um most often inherited uh from um the parents, each of whom carry one copy of a mutated gene. And when the child inherits one abnormal copy from each parent, um they can develop this disease called Tay-Sachs, which is a devastating neurodegenerative disease um that most often affects infants uh and leads to progressive loss of of everything, of of every function, and and ultimately death. And um and we can screen for diseases like this. We can um take a little sample of blood or saliva from someone before they have even gotten pregnant, and we can test to see if they carry variants, mutations in these genes um that could potentially put a child at risk. And that technology is really good. It's incredibly incredibly powerful, and we can test for hundreds, if not thousands, of these types of diseases. And when we have that information, we can prevent those diseases entirely from happening.

[00:13:16]And um Myra and I both got screened. We both had what's called carrier screening um prior to getting pregnant, prior to Myra getting pregnant. and unfortunately the physician who ordered my test ordered the wrong test and misreported my carrier status.

[00:13:34]And um you know, after Had was diagnosed and um and after she died and we learned that this mistake had been made and um I I I just I couldn't believe it given the knowledge and the capability that we have. Um I I really believe that this is the most powerful medical technology we have, this ability to screen someone's genome, to screen their DNA and understand what their risk is for their own diseases that that they may be at risk for or for diseases that they can pass on to their children. And um and in exploring that I came across JScreen, which was this amazing little organization that had been around for over a decade um providing education and support for this kind of thing. And um and it became very clear to me that if JScreen was everywhere, if JScreen could expand and and could expand its offerings and its and its services to everyone in the country, we we could transform the landscape of health and disease in in this world. And um I think in in many ways this was sort of the marriage of my my um my my personal story, our personal story, and and my professional background into like a body of work that um I really think in some ways is like why I was put here, you know, what what I'm supposed to do. And um it is such a beautiful way to honor Had and her legacy and um it's in some ways my my way to be her dad.

[00:15:15]You know, I I I I get to be her parent by putting her out in the world through this work and and through the ability to tell her story.

[00:15:25]>> Yes. Yes. Yes. Yes. A billion times.

[00:15:28]What's not to love about [clears throat] that? Yeah, thank you.

[00:15:31]And Myra, you said I read your answer to one of the questions about um the journey taking I was about taking you back that moment and what led you to Jay Screen and you said uh uh from it started a survival uh figuring out how to live with grief.

[00:15:48]That was one that caught my attention and then turn that pain into prevention.

[00:15:53]So, that was I see your connection with Jay Screen. But, I would like to hear your own words. Is that what it feels like for you now? Still as uh turning pain into prevention?

[00:16:05]>> I mean, I feel just so proud and supportive of the work that Matt and the Jay Screen team do and um I remember the moment that Matt chose to leave biotech to join Preventative Genetics work with Jay Screen and watch the way he his engagement with the world sort of changed and elevated and um and so in that way I I feel so lucky to kind of bear witness to that and feel grateful to Jay Screen for that. Um for me, I uh I sort of my work is more based on movement and community and work that is a part of sort of who I was prior to have prior to becoming a mom and who I am now having lived through this loss.

[00:17:02]And so, um similar to how Matt sort of married his um science with um uh with honoring Hog's legacy, I've done the same from kind of a a sport and community background.

[00:17:17]>> Yes, and I have a question for you about that, too. Your overall your book and your work with the emotion. But before that, what's some I was curious about and I did the research because I love being curious and being surprised.

[00:17:29]What is the the meaning of the word J?

[00:17:31]JScreen? I was thinking about that. Yeah, JScreen.

[00:17:36]>> [laughter] >> Yeah, no, it's a great question. You know, it it started off as an organization um that was providing uh access and support for preventative che- testing largely to the Jewish community. And um and so that's where the J originally came from. But um the truth is is that every community, every population has their own genetic story, has their own genetic heritage, and and risks. Um and some of those are similar and some of those are different and and depending on um ethnicity and where you come from and and what your lineage is, um you know, those those risks can vary in in range and size and scope. And um really this this technology and and this tool is something that everyone should do. We really believe in world-class preventive genetics for everyone. And and so now we sort of joke that J means just screen.

[00:18:33]Just go get screened. Um and uh and we we talk a lot about making making this something that is accessible to to everyone um everywhere.

[00:18:44]>> Yes, thank you. I thought so, but I didn't want to say.

[00:18:48]But I have to ask you about it.

[00:18:51]Uh that's yeah, thank you for answering that question. Uh the other question was about the mistake that was made and uh when you you went through those exams um at first, is that something that's now foolproof, something that you know for sure that can't happen again to others?

[00:19:08]>> Yeah, that's that's a great question.

[00:19:11]You know, mistakes happen in medicine all the time Uh and unfortunately our systems are not foolproof and we do everything we can to reduce reduce reduce reduce the risk of those types of errors from happening.

[00:19:28]I think that the way that JayScreen operates and the the protocols we have in place and the precautions we take and the team and and the level of attention they bring reduces that risk to a very very very small number, but it's not zero and and I think unfortunately it's it's never zero. You know, we can get very very close, but there's there's always a chance.

[00:19:58]But I think in in our case there were so many opportunities for the mistake to have been caught and unfortunately I think it was it was a result of a lack of knowledge to some extent. You know, genetics is complicated and and most physicians aren't well trained in in that area and and so I think that lack of knowledge is a major barrier to really keeping the quality super high and and then I think secondly the systems our health systems in general are not built to support prevention. They're they're not built to support health. They're built to address disease and so we don't have the right infrastructure in place to focus on that sort of thing.

[00:20:44]And that is something that we take great care and and deliberate act in at JayScreen to make sure that both systems and practices and and knowledge are are you know, well aligned to make sure that people are getting the right test at the right time.

[00:21:02]>> Yes. Thank you for answering that question too with some so much honesty and clarity. Thank you.

[00:21:10]So, Myra, I would love to hear about the book. Oh, I wish I could put For some reason, um, Riverside is not letting me show I wanted to show the cover of the book, but I'll have it here on the video. Oh, you have it? Do you have it in front of you?

[00:21:25]Oh, I think you do have it. Oh, wonderful. Yes, yeah. Yes, we'll have it here, too, but uh yes, I love that cover. So, talk to me about about the book. And um basically the question is the feelings. Like, what was that initial feeling? Did you immediately thought about writing a book? I I I I'm asking this question, but it's a silly question. I'm sure that was not the immediate uh thought. But, when did that come to be? When did you think about writing the book?

[00:21:55]>> Yeah.

[00:21:55]>> [clears throat] >> Yeah, the book came from um the the relationship that Matt and I were developing with Havie through writing, actually. We Because Havie had Tay-Sachs disease, she never spoke a word. And so, we had to learn how to communicate with her differently and to believe that we could um speak to her, that we could hear from her, that we could trust what we were um feeling as it related to what she was telling us. And so, um after Havie was diagnosed and we couldn't wrap our heads or hearts around the fact that she would only have two birthdays on this earth, we Matt and I kind of concocted this idea of um combining her birthday with Shabbat.

[00:22:48]We're both Jewish, and so every Friday we were honoring Shabbat anyway, and we said, "Well, what if we combine Shabbat with her birthday, and we could call them Shabirthdays?" And um And so, the title of the book, 57 Fridays, comes from the 57 Shabbat days that we got with Havie from diagnosis through her death.

[00:23:11]And um when we first started celebrating Shabbat days, Matt and I, at the end of the evening after putting Hav down to bed, would uh write to her. We I started opening up a journal that Matt had bought. And he wrote the very first entry to her, and it became a little bit of a ritual that we had where at the at the end of Shabbat Shabbat day, we would write a letter to her reflecting on the week, reflecting on our feelings, um the way in which our grief was expressing ourselves, the questions we had. Um and that became a survival mechanism really for us.

[00:23:54]And we started sharing those entries with our friends and families through um a platform called CaringBridge.

[00:24:03]And this was right in the heart of COVID, and so we had no way of um sharing Havie with so many people who would never get a chance to meet her.

[00:24:13]And this was our way of doing that. Um and so they got kind of a front row seat to the adventures and the heartaches and um all the love that was in her life.

[00:24:28]And at some point along the way, writing became something that felt so generative to me, something that felt so essential to my own um motherhood that after Havie died, I uh had an opportunity to write an article that was published in the Boston Globe, and then really from there, um it just became so natural to try to sort of put what Matt and I had already really done together into um into a book that we we hoped would just be something that could be almost a companion for people who were experiencing some kind of loss um or people who were trying to show up for someone who was experiencing a loss.

[00:25:17]Um and so that that sort of became the the driving force behind 57 Fridays.

[00:25:24]>> Thank you >> for sharing all that those details that it's really um it's hard to explain but I want to um it it it's hard to explain I'm not a mother to who never lost anyone and I'm not a mother but it's incredible how connected we are or maybe how I'm so sensitive to the human experience and I know that this is one of the most painful ones losing someone we love especially losing a child.

[00:25:56]So what do you the question that comes to mind that I have to ask what um what do you remember about her the most?

[00:26:03]Like what's the most beautiful thing you remember about her?

[00:26:07]The most joyous joyful thing. I have to bring that word into the into here the screen.

[00:26:15]For both of you.

[00:26:18]>> I I mean there are so many things. I think um particularly towards the end of her life um I used to hold her and I could like brush my nose against her lips and she would like move her head back and forth like she knew it was me.

[00:26:40]And um it was like her little way of like giving me kiss back and holding me back and uh like when I close my eyes and think back to those some of those moments, it's like I can almost feel her a little bit.

[00:27:01]Um but there are so many things, so many beautiful things.

[00:27:08]>> I can only imagine. Um I have goose bumps when I heard Yeah, Myra talk about the book and you describing now that moment.

[00:27:16]What about you, Myra? Would you like to make answer that question or you should skip the question, too, of course.

[00:27:22]>> Yeah, I mean, I think for me when I think about joy and Hav, it's that she brought people together in ways that um that created like um kind of quieted all of the noise that existed and just centered all of us um into what matters, what was right in front of us. And I've never I don't think I've ever laughed as hard as I did during Hav's life. I don't think I ever um took in experiences as deeply as I did during her life. Um and I really miss I really miss that about um what it was like when she was here in that way.

[00:28:09]And Pico Iyer is a writer who we read a lot during Hav's life and he says, "Life is about a joyful participation in a world of sorrows."

[00:28:20]And um I think that kind of sums it up.

[00:28:24]>> Mhm.

[00:28:24]>> [clears throat] >> Wow, I've never heard it that way.

[00:28:27]Yes, yes. I get I keep saying the word beautiful because it is. Yes.

[00:28:32]Um thank you for sharing all that, too.

[00:28:34]And it's um it's to me it's like it bring it back the reason why you're here, the reason why you're doing what you do. It has everything to do with her. So, why I I keep coming back to I have her name in front of me. I have a picture, too. And it's red. So, every time I look at it, it's kind of ah how can I bring her more into the conversation?

[00:28:56]So, um with that in mind, too, I would like to ask you, Myra, about the work that you do with the Emotion.

[00:29:04]And um also this well, resilience and and that well, I'm certified uh a certified compassionate bereavement care provider.

[00:29:12]So, the question that comes to mind is what is the most challenging um let's say um what's the the most challenging barrier overcome when it comes to grief, losing somebody, especially losing your child?

[00:29:30]For some of the people that you work with that you've been in touch with, I would love for you to uh and I'm at too. And and what can we do about it? How do you help them to uh overcome those challenges?

[00:29:43]>> It's a really It's a really important question. I I think the first part is that we don't ever going to overcome our our grief. And we do a lot to educate and empower people to trust themselves, to trust the pain, to trust the grief.

[00:30:03]And um there's so much education that is required to do that. Um and and yet once we do, and it's a there's a fairly sort of basic language of loss that people can learn. And we teach that at Emotion.

[00:30:19]Then we start to give people the the sense of community, connection, movement practices that help them build stamina. And so for us, stamina is all about how we take care of our bodies.

[00:30:32]And that could be moving gently or it could be training for something more intense.

[00:30:40]Um but we kind of create personal programs for people that meet them where they are in that way. Um, and I think the the hardest among the hardest things for grieving people is is just this intense isolation, this feeling that um, you are sort of alien, um, and that you don't belong, and um, and so we try to combat that by almost an analog approach, which is in person, in community, moving together, um, looking at each other in the eyes, crying, laughing, holding hands, um, and doing that over and over and over again until you believe that you have a right to to be here and to um, to be here in a way that feels really good.

[00:31:27]So, that's kind of what we do.

[00:31:29]>> I mark that answer, too. Yeah, be here in a way that it feels good. Mhm, right.

[00:31:34]And thank you for saying that, too, about overcoming. Yes, yeah, I meant overcoming the challenge of grief. One of the things that I have learned by being in touch with so many people uh, on the topic and people have been through the experience, too, they talk about not yeah, isolating themselves and not taking care of themselves. That I hear that over and over and over again.

[00:31:53]Mhm, like to add something, Matt, to this topic of of what Myra does and and grief in general.

[00:32:02]>> Mhm.

[00:32:05]Yeah, man, I think I think what she has built, um, as a resource is so unique in in the grief space. I think we're so taught to run from grief, to hide our grief, to move past our grief.

[00:32:23]You know, what what we're constantly being told to to get over it and, you know, to be resilient, to bounce back, and not let it hold us down. And I I think she and the the work that her team is doing and the incredible people that support it.

[00:32:43]They're they're changing the language of grief. They're changing the way that grief can exist and that we can exist with grief. It's not something to be ashamed of. Um especially because we'll all encounter it at some point in our lives. It It It is the the great unifier in many ways. Um and and I think it's it's transformative. It's It's unbelievable the way the redefinition of that can can um be a generative force for people and can be empowering. It's a It's a superpower in in some ways.

[00:33:24]>> Yes, it absolutely is. I love the way you described that, Myra, um about the community. So, yeah, you're bringing sharing, kind of not being afraid of being seen.

[00:33:37]Your feelings and that the raw feelings.

[00:33:40]So, that's really sacred because um I call it sacred space because we often don't have that space that we can just be ourselves, be be vulnerable, you know, really show up as as we are in that moment. So, it's really it's like to me it's a divine uh work. It's sacred work.

[00:34:02]So, thank you for doing that. Thank you so much.

[00:34:05]You too, Matt. Of course, the work that both of you do is uh it's sacred to me.

[00:34:10]Yeah. So, going back to JScreen, there's a it's um it just feels very technical, so that's why I have to I'll ask you, Matt.

[00:34:17]The um So, J- JScreen offers uh several testing options including the uh reproductive carrier carrier screen and then the hereditary cancer test and then the combo bundle. So, talk to me about the difference. Do the people actually do all of them? They sign up for all of them or Yeah, I would love to hear how it works because it sounds very technical.

[00:34:44]>> Yeah, I I think um there are uh there are many diseases that um we understand the genetics for. Um we understand that genetics that can cause those diseases that can um be responsible for passing those diseases on to our kids.

[00:35:06]Um and and so the um the carrier screen is primarily a set of diseases and disorders that would be um heritable.

[00:35:17]So, diseases you would pass on to offspring.

[00:35:20]Um and then the cancer screen is is more looking for um genes or variants in genes that would put you at risk for developing certain types of cancer later on in life. Um and so a lot of people will do both, you know, that they're thinking about starting a family and they're also wanting to make sure that they're around to take care of that family. Um or they may have a family history of cancer and they don't want to pass those genes on to a child um or or a future child. So, uh in in a lot of cases we will have people doing all of that kind of testing. Um and there are other types of diseases, cardiac disease, that there are heritable components to. As our science gets better and better, um that list only grows and grows. Um so, it it really is um a foundational component of general health, like general preventive health.

[00:36:24]Um you you eating well, exercise, and understanding what your what your genetics are.

[00:36:30]>> Yes. Yeah, thank you for explaining that. A question that comes to mind immediately is um what if couples go through this process of doing this test and then if it comes positive, then what would be the decision? I'm just wondering here um in a case they they would actually not decide not to have a child if they implication would be passing on some of these um >> Yeah, you know, there there's a lot of different paths that people can take. Um I think obviously one of those is if you find that you and your spouse are both carriers of the the same disease, um you can make a decision not to to have children, of course.

[00:37:15]Um but you can also take other paths. You um we're I think very fortunate in in this day and age to have access to assisted reproductive technology or or IVF. Um and that technology is incredible. Uh you can actually um select which embryos you want to implant and we can test those embryos to see whether they carry the risk of those diseases or are affected by those diseases.

[00:37:49]Um so you so you can essentially eliminate any risk of of those diseases in the embryos that you implant. Um that is incredible incredible capability.

[00:38:01]That that's curing a disease. It's remarkable. Um so that that's another path that obviously uh is one people can take. And then finally, you know, even if both parents are carriers, um there's not a 100% chance that the offspring will have it.

[00:38:20]It it's um it's really a one-in-four chance for um uh traditional autosomal recessive diseases.

[00:38:29]So, if both parents are carriers and they decide they want to conceive naturally, now they know that there's a potential risk and you could test the fetus um earlier than you would otherwise. And And so, the you know, the system, the physicians, the OBs can be on alert. Um and and that information can obviously be very powerful and informative, especially as new therapies are coming down the line um that that uh you know, you want to treat the sooner the better. So, there are lots of different options and pathways and um and our team at JScreen with genetic counselors and and um and really, really strong sort of customer support help help folks to navigate those kinds of questions and those kinds of decisions.

[00:39:17]>> Yes. Um that's also very clear to me. I think of the saying all that. I love the technology these days. There's so much that we can do, so we are not limited. That's really, really wonderful to know. I wanted to mention the website, so it's jscreen.org.

[00:39:34]It will be clickable on the podcast notes, too.

[00:39:37]So, um now I just kind of went with all all my own questions and space questions. Just uh they're still here and I'm trying to go back to them. Did I miss something on how do we speak with things genetic?

[00:39:50]We talked about this. Uh uh in movement. So, because I went on with my own questions, I kind of I'm trying to go back to see if I uh the last >> I think you I think you covered a lot. I think you covered most of it.

[00:40:04]>> Yes. It was I that's the I like the end of the end of um of one of her questions. Um it says, "Where can viewers go?" Okay, not this one. "If you could reach every family watching right now with one message, what would that be? I really like this question. So, yeah, I would like to hear that from both of you.

[00:40:25]>> I think I I think my one message to people is that genetics is incredibly powerful and not something to be afraid of. It's something to embrace and it can it can save lives. It can save the life of your children. It can save the life of a spouse or family member. And it can save your own life and just just like we do our best to eat well and to exercise and to to take care of ourselves, this should be a component of that regimen. And and obviously we're here to help in in whatever way.

[00:41:03]>> Yes, thank you. Thank you.

[00:41:06]Myra, I would love to hear your answer to that question.

[00:41:11]>> I love that and just underscore Matt's um imperative and that it doesn't have to feel so scary, I think. Um maybe my message would be that um I I I think that community could be and should be a right for people and that we can all do our part in showing up in a way that is that is also life-saving and that it's not complicated. And um and I think that that ultimately is why Matt and I are um able to exist in the way that we are because people have chosen to um to embrace us and embrace Javi and keep her present and that is everything.

[00:42:07]>> I love that.

[00:42:10]And I love the way you said that showing up in a way that um like I saved lives.

[00:42:15]I'm I'm trying to paraphrase, remember exactly.

[00:42:19]It's life saving, in a life saving way.

[00:42:22]How do you describe that? I don't because I call it sacred space, like we is safety. But what would that from your perspective, you know, from from a day-to-day living, too, not just in a professional setting where people are already expecting certain um let's say protocols. But what would that look like in a day-to-day living? Uh everyday moment. Showing up in a life saving way.

[00:42:48]>> I think it's like it's really believing that paying attention and being present matters. Like just in the way that we're having this conversation and that there's a way of there's a way of of attending to someone who you're in conversation with or someone who you could be in conversation with. Um we have so many distractions.

[00:43:11]I think Matt was listening to a podcast that Pema Chödrön was on and she said something I believe, you know, that we're just being trained in distraction. So for me, showing up is about presence. I think it's about um being with pain without trying to fix someone. Um so often we end up feeling minimized um because we are with people who are afraid. And so I think showing up every day is is just about honoring what we're feeling. Um and I think the we have a third is just like doing things, big, small, um that that action matters.

[00:43:53]Um and and it doesn't necessarily require much cost. Um it could be going back to writing a handwritten thank you note. Um and believing that that's enough in that moment.

[00:44:10]>> Wow. Yes.

[00:44:12]I just thought about my husband and my dog.

[00:44:21]Thank you so much for your presence.

[00:44:23]Thank you for what you both are doing in this world.

[00:44:27]And my last question had to be this one.

[00:44:30]If Hav is listening, what would you What would you What would you say to her if she was here?

[00:44:37]If she is here. I like saying that way.

[00:44:39]She is listening.

[00:44:41]What would you say in this moment?

[00:44:44]>> That her I think I would say that um that her siblings really, really love and miss her.

[00:44:52]>> Mhm. I love her.

[00:44:54]>> Me, too.

[00:44:56]>> Yeah. I think I would say um I think I would say I'm so proud of you.

[00:45:03]I'm so proud of what you left this world. Like, look what you've done. Look Look like Look how you've impacted people and how how you've how you made us.

[00:45:15]>> Oh, gosh. She impacted me.

[00:45:18]Um all the way in this corner of the world and then ever knowing that I would meet her one day. So, um yes. Yeah, thank you so much for being for presence, a brief presence in this reality and what she came here to teach us.

[00:45:34]I thank you for being open to life with love, unconditional love. I want to cry just by thinking of that.

[00:45:41]>> [clears throat] >> Like I said, I never lost anyone, but I can feel it. It's just so And you're coming from that place of unconditional love. Yes. Everything can happen in this life and wow, let's be open to it with more love. With more and more love. Thank you so much, Tyler.

[00:45:59]Thank you so much, Matt.

[00:46:02]>> Thank you.

[00:46:03]>> And we'll we'll be in touch again. Uh, this is the end of the conversation. The website again is jaysanalysis.org and I'm like, "Crying." I can't help it.

[00:46:12]But, we'll meet again. We'll talk again.

[00:46:14]Thank you so much. Thank you.

[00:46:16]>> Thank you.

[00:46:18]>> All right.

[00:46:32]>> [music] [music] [music]