Emma Nadler:
Nadler.

Martha Beck:
Emma Nadler. Okay. So Emma Nadler, author of The Unlikely Village of Eden, which is out right now. You can go get it at Amazon or any place where fine books are sold. So welcome, Emma. It’s so good to have you.

Emma Nadler:
Thank you so much for having me. I’m really, really glad to be here with you and kind of used to life in plan B. So here we are on Instagram, not Facebook, which I think really sums up what my book is about, which is the life that does not go to plan. So we just pivot as we do. My phone popped out of its holder. That’s where I went, and here I am. We’re just going to do the best-

Martha Beck:
Here we are.

Emma Nadler:
… we can here, imperfectly, together.

Martha Beck:
I love the way you frame it up, that it’s about when life doesn’t go to plan, because it really never does. But there are certain things that mess up our life plans more than others. And you had an absolute doozy, a wonderful, blessed event that turned your plans upside down. So, eight years ago… You want to give the folks a bit of a description of what happened?

Emma Nadler:
Yeah. So I had my second child and the plan was… She was healthy. We did all the testing prenatally, and then things… She had some feeding challenges. It didn’t quite seem that she was getting what she needed, developing typically. We did some genetic testing, just in case, just let’s just see, not expecting anything big. And then got the news that my daughter, Eden, was born with a extremely rare, significant genetic deletion, which means that she’s missing a good amount of DNA. And it’s a diagnosis, it’s so rare, there’s no known understanding of how that would unfold, only that it would be a really significant impact in her life with a lot of different medical challenges developmentally.

And so we were flung into uncertainty, which I think many people can relate to, perhaps not in this specific way since my daughter has such a rare condition. But I think this feeling that there was a plan that you have for your life and you think, “Yep, it’s going to be this way. This is how it’s going to be.” And then there’s at least one major deviation, if not a series of many, that we often experience in life. And so this was ours. This is mine. And then that altered the shape of my life forever in so many ways.

Martha Beck:
Yeah, and it’s so interesting because you are also a psychotherapist, so you are in a unique position to comment on your own process. Isn’t it always true that people seek out psychotherapy because their lives are not going to plan? So, do you have a thing… As you said, we were talking before we went live. I have a son with Down syndrome, but it’s so much more cut-and-dried, predictable. There’s a huge range of behaviors and disabilities and abilities and different abilities with Down syndrome. But what you’re dealing with had no name, had no prognosis, had nobody else to go talk to. As a psychotherapist, when somebody comes in and says, “My life’s turned upside down,” do you have a process that you learned from dealing with this? “Okay, here’s how you go into a totally uncertain future.” What do you tell people?

Emma Nadler:
Yeah, yeah. That’s such a great question. And we’re all grappling with uncertainty. No matter who you are, being alive is uncertain. So I think part of it is accepting and not fighting that we all live with uncertainty, and that’s a part of the human experience. And we’re also wired to not want that uncertainty. We want to know, and I think evolutionarily, when the saber-toothed tigers come in through the village, we want to know when they’re coming. Evolutionarily, we want to have a plan of what’s going to happen and when. And that really, I think, it hits at a core part for a lot of people wanting to know. So I think part of it is accepting. It’s like that radical acceptance piece. I’m a real big fan of radical acceptance, and when I say really big fan, I mean I have to return to it again and again, personally.

Martha Beck:
How do you do that? She got out of the hospital again on Wednesday, you were telling me, so that’s another week that didn’t go… Or a month, or whatever. There are so many days when you get your feet taken out from under you, and all of us have that in little ways, but in your life it’s major. So when it happens, again, you said you have to go back to it and go back to it. How does that look for you? I’m very how-to oriented.

Emma Nadler:
Yeah, and I love that. Well, part of how it looks is calling in my people. So, part of how it looks, and I really think, like in my memoir what I share is, I think we can get through nearly anything if we are not alone. So The Unlikely Village of Eden. So, if we are not alone, we can generally do it. And so I am really curious whenever I’m going through something or whenever something becomes more acute with my daughter or anything else, it’s like, “How can I not be alone in this? How can I reach out, ask for help, put it out there?” So I’ve gotten good at that part of it, and I didn’t start there.

And that’s a lot of what the book is about, is starting out in this place of maybe wanting or hoping people would know what I needed or trying not to have those needs at all, which I think really reflects cultural norms and motherhood, like, “Don’t have needs. Just sacrifice yourself.” And so now I take better care of myself and I do ask for help, and that doesn’t mean it’s great. I mean, yeah, it was really hard in the hospital and there were times where I really felt the intensity of what my kid has to go through because she does have to experience some suffering. And as much as I want to take that away, sometimes I can’t. And I’m still doing everything I can for her to advocate for her, but it’s not up to me. And so that’s a lot to grapple with for any of us who love people, who struggle.

Martha Beck:
How do you let go? How do you be present with your daughter and love her and not be overwhelmed by that suffering? I think that’s a big question for the people who come to this. With me they’re very empathetic. And how do you be with people and help them and heal them, and you’re a healer, and not be overwhelmed by their pain, especially when it’s your child? And the culture does basically tell you, you’re supposed to be molded to them and fix everything.

Emma Nadler:
Yeah. Well, I think sometimes I am overwhelmed and then when I’m overwhelmed, I just notice that I’m overwhelmed and then I try to deal with that. So I think there were times where I felt that, and I do feel that. And then I try to deal with what is, I guess. I don’t feel like I have any… I wish I had some magic answer about how not to react when your child is suffering. But I think that what I do is, I mean, I try to feel it and deal with it. Deal with what she needs, and then get the support that I need. And I have people in my corner and I’ve kept people in my corner, the people who can really get it. That’s who I’m interested in connecting with. Yeah.

Martha Beck:
So you talk in the book about how some friends… I mean, you don’t say anything negative about anyone, but it’s clear that some people were up for this and some people weren’t.

Emma Nadler:
No.

Martha Beck:
And some of them were really caught in the spirit of there’s something wonderful and special about this child, and I want to be there in her life. And it’s amazing that this retired business CEO, a middle-aged man is like, “No, Eden is my best friend and I’m going to be there with her.” And that’s beautiful. And then there are other people that you let go of, and what’s left is the village. Do you ever think that, what if Eden hadn’t been different? Or if you never had her, what would your village look like then? And would it be… It’s apples and oranges, but do you look around and think, “Thank God for this village. I never would’ve known this if I hadn’t gone through this suffering?”

Emma Nadler:
Yeah. I mean, I do think about that. And I think I’ve been really fortunate to meet some incredible people through my daughter, through the circles and the people that she has drawn into her life, and also people I’ve reached out to and they’ve reached out to us, however relationships happen, which is definitely a two-way street.

Martha Beck:
Yeah. Yeah.

Emma Nadler:
So, yeah. I think in some ways it’s luck and in some ways it’s a lot of factors that go into relationships. Sometimes it’s pure chance, and I do marvel, and part of my book is around that magic of pure chance of the people that we can meet in our lives and how we really never know who’s going to change our lives. I think that’s incredible just to consider. We don’t know what… I could meet someone tomorrow, and then that person becomes… Right? So, yeah, I think that part has been really amazing to have those connections.

Martha Beck:
And what is your way of relating to Eden herself? Because, against… I was really stunned that she learned to walk and talk and tell jokes. I mean, she’s really… When a patch of DNA is missing that’s that big, wow, it’s amazing how much she can do given the extremity of that issue, or what I would think of it. But how do you relate to her? Because my relationship with Adam is very different from what it would be if he didn’t have Down syndrome, obviously. And I had to go to a frequency… Now I’m getting woo-woo, but y’all know I’m woo-woo.

I had to find another frequency. He wasn’t verbal. He still isn’t really that verbal as an adult, but he also has a very strong frequency that when I can reach it allows me to connect with him. It is very woo-woo. Like, he knows when I am upset. Throughout his life, we’ve had a connection that is more psychic than just material. I’m not saying that that has to happen to you, but do you have a different way of relating to her that you had to develop as she grew?

Emma Nadler:
Well, a lot of how we relate is through pop music-

Martha Beck:
Of course.

Emma Nadler:
… because she is a serious pop fan and knows so much about music. And my husband’s a musician, so it’s been fun for us in so many ways. And if you’re going to have… I mean, she just has this deep love of all the divas and all this, and things I wasn’t necessarily super into before her, but we listen to the songs and that’s a lot of how she learned to read, was the lyrics, reading lyrics of songs. She has incredible pitch and loves to sing. So we listen to music.
And even when she was just in the hospital, we bomped Beyonce all through the floors of the hospital. We would go around in her wheelchair and we would play Beyonce and all the staff would laugh and cheer us on. And Beyonce just happened to be in town in Minneapolis at the same time.

Martha Beck:
Oh, cool.

Emma Nadler:
So we would say… No one at the hospital was at the concert, but come hang out with us because we were at the hospital. So, I don’t know, but she’s fun. I mean, she’s very fun and joyful, and that music piece is an amazing way to connect.

Martha Beck:
That’s incredible. And I think that’s what the arts are for, really, to get past the usual cultural ways of connecting. We’ve been getting questions. I’m going to read some of them to you, okay?

Emma Nadler:
Okay.

Martha Beck:
Someone says, and this is a big one, I wonder it myself. “How do you deal with the overwhelm?” Because you’ve got your career, you’ve got a child with continuing needs, you’ve got this whole village to connect with. That’s actually a lot of connecting work. “How do you deal with overwhelm?”

Emma Nadler:
I think that having a spiritual connection has been helpful to me. I’ve spent a lot of time in nature and we moved out away from the city when Eden had the most medical needs. We decided to leave Minneapolis and come further out and be around the woods. And my neighbor comes and grows flowers with me and I make bouquets, so I think that piece is really helpful to me. I’m Jewish. That happens to be helpful to me. I think you don’t need to have any one religion or belief set. I think it’s just great to have some kind of connection with any kind of spiritual life, and that can look so many ways. There’s never one right way for that. But that community has been helpful to me. And I think the people that I know and reaching out and being real about those things, those are some of the things that help me to manage it.

Martha Beck:
Beautiful. Huh, yeah, it’s a lot. But, you certainly… I mean, read the book folks. You want to get this book to find… Because you’re so honest in it. Several times you just are like, “I can’t do this anymore.” And yet you always do it. But, like, four or five times you talk about it. It just got to a point where you couldn’t do it, and you would tell people you couldn’t do it. And yet you never checked out completely. You were always able to show up by… I loved your resourcefulness and the way you were always like a fisherman throwing out line after line and going, “What kind of thing can I connect to that will help me, and will help her?”

And you just kept… And your family relationships. You have an older son. Your relationship with your husband. You’re really, really honest about all this stuff, and the way you just tried everything until you found things that worked, is really inspiring and it really helps me think, “Well, that’s what I will do the next time things don’t go to plan.” We’ve got another question here. “How do you calm yourself down when everything is so uncertain?” This person says, “I’m in my early 20s and terrified of the future because anything can happen.” And we do. Young people have higher rates of anxiety than ever before in history. So the world isn’t going to plan, right?

Emma Nadler:
Right.

Martha Beck:
So here’s a 20-year-old saying, “Anything can happen. Please help me deal with that fact.”

Emma Nadler:
Yeah. Well, another thing that is connected here is… I mean, I like to say, every good therapist needs a good therapist. And I think every person who’s really grappling with something, I think if you can, to connect with a therapist, that was really helpful for me. And my therapist was… I was getting a lot of pity. I was getting a lot of, “Oh, my God, how do you do this? I can’t imagine.” And all well-intentioned, but I felt this distancing when people would say things like that. And my therapist said, “I think you can have a good life.” He just said, “I think you can, and I think Eden can, too.” And then I really wanted to fight for it because I felt like there was someone that believed that for me.

That’s something I really try to pass along because I think most of the time we can find a way to have a good life, regardless of the circumstances. I’m really interested in that, and in this setting, of course, this is not therapy, this is just our conversation. But when I do work with clients in a therapy role, I am really interested in exploring that with them just because I believe that for people, that you can still have a good life, and what would that look like for you? So, I mean, I think part of it is focusing on that too, holding that with the pain and the uncertainty. It’s all there, but we can’t get away from uncertainty. I think there’s so much we could talk about with this. We could talk about this all day.

Martha Beck:
Yeah, there’s a saying, I can’t remember who said this. Someone in the ’60s. “You can’t stop the waves, but you can learn to surf,” and no two waves are ever alike, and they just keep coming and coming and coming. I was only 25 when Adam was born, so I hadn’t really gone through a ton of life crises yet. But I remember thinking… I was always trying to reframe things in a positive way. After getting therapy at 18, I was like, “Maybe I do want to live, but I’m going to have to reframe everything.” And then when Adam was diagnosed, I was actually told, “You can’t reframe this. You can’t have a good life. That’s not going to happen for you. Either put this kid in an institution or you will not have a happy life. You will never stop grieving. You will never feel whole.”

And they showed me evidence, studies, and I was like, “Screw that.” I’m like, “No. No. Okay. How far do I have to go to reframe my life to make this okay to…” And one of the things that we both have also is, as caregivers, and I’ve been very, very, very blessed as well, but I’ve never just walked out the door to go on a trip without arranging childcare since, what? Since 1988. That’s a long time to not be able to leave without arranging some kind of care. That was staring me in the face from a very young age. And what I had to do was go completely outside of culture. Entirely outside of culture. And I love that you moved to the wilderness, or closer to the wilderness when Eden was most… Because she was so in need, you’d think being by the big hospitals would be great, but that’s when you moved to nature instead.

Emma Nadler:
Yeah. And, Martha, I read Expecting Adam many years ago and then reread it once we had Eden and once I got her diagnosis, and you have been such a pioneer in challenging the ableist cultural norms and really pushing that piece. And I just think it resonated so much with me about this idea of perfectionism and able kids. Even to call someone healthy or not healthy and to judge that has some judgment about, one is better and one is worse. And I think, just the way that you talk about Adam and the way that you opened… Let him in. It was really helpful for me, personally.

Martha Beck:
Aw. [inaudible 00:21:35].

Emma Nadler:
I wanted to share that with you.

Martha Beck:
It’s not an interview about me, it’s an interview about Emma and [inaudible 00:21:37]-

Emma Nadler:
Yeah. But it’s notable. I know. But it is notable that that affected… And I want to keep going with that. Keep going with the challenging ableism, because I started this adventure with my daughter having some sort of grappling with my own ableist thoughts, and really wanted to challenge those through the book and in my own life about-

Martha Beck:
You really do.

Emma Nadler:
Yeah, I hope so. Because I think some of those cultural norms, especially around perfection and atypical, and having a child that’s different is less than. I mean, we’ve got to keep going on that because the work is not done. We still live in a culture where people send out the baby’s notes and they say, “Mom and baby are healthy.” And healthy is great, but it’s also… It’s complicated. It’s complicated.

Martha Beck:
What if they sent out a thing that said, “Mom and baby will have difficult lives and then die.” That would be just as true. It doesn’t matter how healthy you are.

Emma Nadler:
Yeah, right. And I get how… Like I want my kid… It’s so complex because part of what Eden has struggled with is these medical challenges, and it has been hard. So I don’t want to say, “Let’s try to go for unhealthy,” because it’s just complex. Yeah.

Martha Beck:
Elizabeth has a question. “How are you able…” And this really pertains to what we were saying about culture. I think that’s at the heart of this. “How were you able to balance the needs of your child, your career, and your own personal needs?” And we’ve been talking about it, so you’ve gone at it in many ways. But for me, what the book says is, “Go outside all expectation. Go into the country, beyond expectation, and see what you can find there.”

Emma Nadler:
I love that. I love it.

Martha Beck:
And you did an incredible job. Just incredible.

Emma Nadler:
I mean, I love that, and it’s still… I think because we’re never outside of culture, I feel like I’m constantly trying to live creatively and challenged some of those norms. And then, even in motherhood, just trying not to only be good. That’s such a cultural norm that I think we inherit. Like, what would it be like to be something beyond that? So, I mean, I don’t know. I think that people who are talking about balance is a myth. I think that’s true. I’m not in balance, but I have work that I love and people that I love, and it is really imperfect. I’m not just like… It’s imperfect, and that’s all I can really say about that. Maybe that balance is a myth and we just do the best that we can with it.

Martha Beck:
Yeah. Somebody else asked, and you’ve addressed this too with your religious and spiritual community. She says, “Is spiritual helps something you go to? Feel a need for?” And here’s what I will say as a sociologist, or I was once a sociologist. You just said, “We’re always in culture,” but there is a time when we’re not. And that is an experience when we’re away from others and in connection with what they call the numinous, like some source of meaning that we derive when we are by ourselves and often in nature. And it actually is not cultural, but it’s the spark of all new cultures. So somebody who’s had that experience comes back to the village, in this hypothetical, traditional setting, and says, “I have had a connection with spirit, essentially. With the great spirit,” whatever that is. And from that, a different culture begins to form.

That is the seed of all cultures. And when I read this, I thought, “The Unlikely Village of Eden is a new culture.” It’s a culture where normalcy is not defined by having the same genes. Normalcy is not defined by being able to run off and have a vacation without taking care of your kids. Normalcy is defined by love, as you just said, by the moment, by staying balanced on the wave that’s moving now. And it actually is a great model for a culture for anyone moving forward. What Natalia said about, “I’m 20 and terrified.” You need the same kind of culture that Emma created around Eden. And I just love the way that culture is going abroad now because words are the conveyors of culture.

And this book has within it the recipe, in a way, for finding that connection with the numinous because of the calamity, what appears to be the calamity. And then because of that, learning to balance and play. You talk about the fun and the joy, and when your village is there together, and Eden is the center of it, everybody’s the center of it, right? Nobody’s the center and everybody’s the center, but it’s based on joy, love, and unconditional acceptance. And who doesn’t want that? We all desperately need that right now.

Emma Nadler:
Yes. Yeah. We do all desperately need that. And I think that’s why this book is resonating with people because we’re isolated, and I think more so after the pandemic than perhaps ever before. And we’re all longing to find connection, to have webs of helping and being helped, to be in mutual reciprocal relationships where we’re taking care of each other, not just one way, but really back and forth and all around. And so, yeah, I mean, I think I am really interested in how could we be more connected here? How could we be less alone? What can we do to reach out to each other along…
Because everybody, even if you don’t have a kid with a serious medical challenge, if you just have a kid or multiple kids or whatever, and you’re parenting in this world right now, or grandparenting, or aunting, or whatever you’re doing-

Martha Beck:
Or you’re living.

Emma Nadler:
Exactly. Or living, or you have a dog, I don’t care. It’s hard, okay? It’s hard. And there’s a lot every day that we all struggle with. It’s a universal and we need each other. So, yeah, I think if you’re 20-years-old, who can you bring in? How can you create regular time of connection? Maybe you can start… When I became a mother I started a group for mothers because I didn’t know enough moms and I wanted to have friends who had babies. But you certainly don’t need to be a parent to create something. Make a book club, make a discussion group, make a neighborhood fire, bonfire. I don’t know. Be safe. But I just think we have a lot of power in what we can create together, is what I’m trying to say, at any stage of life.

Martha Beck:
Brilliant.

Emma Nadler:
It doesn’t need to be one stage.

Martha Beck:
Yes. And if you want to find that power in the worst thing that ever happened to you, read this book and then bring up the times in your life when things do not go to plan and watch the way Emma sifts through the things that didn’t work and then goes to the things that do work and the way she’s building community around her. It’s a great story, a great guidebook to all of us living in an uncertain time, and I hope you all run and by it. Okay. Thank you so much, Emma. Thank you everyone. Sorry for the switch over of formats, but that’s what we do when we’re dealing with Emma Nadler. She handles things, right? Go find out how. Thank you. Thank you.

Emma Nadler:
It’s been very on brand. Thank you so, so much for having me, Martha.

Martha Beck:
Give Eden a big, big hug.

Emma Nadler:
I will. I absolutely will. This has been such a joy with you today.

Martha Beck:
Thank you.

Emma Nadler:
And thank you everybody for joining us.

Martha Beck:
Oh, mwah. See you all soon. Bye.