A Minnesota psychotherapist is sharing her story of caregiving in a new memoir. “The Unlikely Village of Eden” by Emma Nadler is about learning to adapt when life doesn’t go to plan and how even though 53 million people are caregivers in the U.S., their reality is often ignored.
MPR News’ Emily Bright sat down with Nadler to talk about her life-changing experience.
Nadler will speak at Minneapolis’ Washburn Library about her book Thursday night at 6 p.m.
Use the audio player above to listen to the full conversation.
We attempt to make transcripts for Minnesota Now available the next business day after a broadcast. When ready they will appear here.
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EMILY BRIGHT: I love your book, and I'm excited to talk about it. And I think maybe we should start this story where your memoir starts, if you could kind of paint the picture for us. You've got two little kids. You're on vacation. And you get a call.
EMMA NADLER: I was in Palm Springs, California, on winter break, and I got a phone call from my daughter Eden's neurologist. And it was really close to Christmas, and I knew that if he was calling so close to a holiday, it probably wasn't good news.
And it was just one of those phone calls where it's like, OK, I knew I will remember this phone call. This is a before and after type moment. And in that phone call, it was revealed that my daughter likely had a really rare genetic deletion, and he basically said her test results are in for her genetic testing, and we found something that looks like it's going to be big. It's going to be a big change.
EMILY BRIGHT: Talk us through a little bit about the story that you're telling in your book.
EMMA NADLER: This is a story about when life doesn't go to plan. So specifically, for me, it was about learning that my child has an extremely rare genetic deletion. So you don't need to know anything about science to maybe understand she's missing a significant amount of DNA. And so that affects all parts of her functioning and led her and us down a path of medical challenges, developmental delays.
She lives on a feeding tube. She's had a lot of challenges, but it really is about my experience as a parent, as a human, as a therapist, and the way that I work to recalibrate my life and all of the relationships around me, the ways that people rallied. I really was surprised and wowed by how many people were there for us and also some of the disappointments and some of the-- a big chunk of the grief. I really wanted to create a realistic picture of what life can be when it doesn't go to plan. And so that's joyful, and that's also heartache.
EMILY BRIGHT: Because we are also always so much more than any diagnosis that we have. What's Eden like?
EMMA NADLER: Eden is definitely one of the most fun people I've ever met. And I am extremely biased, but she--
EMILY BRIGHT: As you should be.
EMMA NADLER: As I should be as her mother. But she is a crowd pleaser, I will say that. People love her because she is so-- well, first of all, she's like a total almanac of pop divas and just a serious music fan. And my husband's a musician, and I think she really somehow got that part of our DNA passed down to her. So she's a great singer and dancer and a live, sort of vibrant personality.
EMILY BRIGHT: Thinking about the book, you talk a bit about your own life because you are more than a caretaker, you're a psychotherapist. You've got your own interests. So talk about how the choices you made to include yourself in the story.
EMMA NADLER: Yeah, I wanted to really write the thing that I wanted most. When I got Eden's diagnosis or when we did, my husband and I, I wanted a book that kind of held what Jon Kabat-Zinn calls "the full catastrophe," so all of it. So I decided, OK, well, the book doesn't exist. I'd like to write it. And I thought, well, if I'm going to write a memoir, I guess I'll have to include myself. One of the things I do, I'm a psychotherapist, and so I'm not really used to including myself all that much in terms of anything public. And so that was a really kind of wild and interesting journey to then be so revealing and so vulnerable.
And ultimately, I'm really, really glad that I put the book out and that it is vulnerable. And I really wouldn't have it any other way. I think it's been actually deeply life changing for me to be more seen. And as caregivers, we're often not seen. I mean, there's 53 million caregivers in the United States right now. And I think most of us feel really tucked away. And our work is so private or in the home or in different settings, where, often, what we do is not understood. And so that felt really great to be a part of sharing and revealing that world.
EMILY BRIGHT: Yeah, and you mentioned something that I think is very relatable to mothers specifically when your daughter was really tiny and having a lot of medical appointments, and you were wondering, how much of this is my fault? Even when it clearly wasn't, you still would live with that question. And I think that many moms turn to guilt pretty easily. This question is way too huge, but why do moms put so much on ourselves?
EMMA NADLER: Well, I love a huge question, so bring it on.
EMILY BRIGHT: I figured you were up for it.
EMMA NADLER: Yeah, I am really up for it. I might twist it a little bit because I think we put things on ourselves because they've been put upon us. So I think that originally, it comes from culture and from society and from the expectations that are just Herculean on us as mothers. And I think ultimately, as parents, we have, in our society, now are doing the work of what a village used to do.
So that's why I'm really interested in how can we bring the village back more and more. How can we alleviate some of the pressures and strains and really backbreaking work that parents do, even if you don't have a child with significant disabilities or needs. I think most parents are just absolutely stretched to the max, and I think we could do a lot systemically to help parents, no matter who you are. It's so easy to feel alone in that and feel like it's your fault, right? We feel like, oh, we must have done something wrong. It must be me.
EMILY BRIGHT: Right. Well, let's talk about that. The book is The Unlikely Village of Eden, and this is full of different moments in your life where you have worked hard to create a community and a village. Tell me more about that because it's so important.
EMMA NADLER: Yeah, it's a work in progress still, and I always like to say that when I talk about building a community because I think there's so many people who feel like, wow, I don't totally have that. And I think that it's worth working for. And I guess what I think is, if we want to be connected to other people, especially in this post-pandemic landscape, we have to work pretty hard to keep it up and to be a part of it.
And so, the book is really about my efforts to stop trying to, quote unquote, "do it myself" and to invite and accept help, to look at how can I do that for other people when I can, and there's seasons for that, right? I mean, I think for much of the book, I was in a place where beyond my career work, I was more on the receiving end of the help. And that was a season. But maybe even when we receive help, we help others by being a part of each other's lives.
EMILY BRIGHT: So for people who are listening, how do you advise go about creating a village or creating a community?
EMMA NADLER: I think just off the cuff, well, first of all, being willing to reach out and not waiting for other people to know or understand what you're going through, but to really be the one to say, here's what would be helpful for me. Would you be up for it? And I always think about, is there anyone you could ask that you think would really actually be likely to be there for you? I think this is best done in really small, incremental steps with people who are trustworthy first, right?
And I'm saying this as a writer, not as a therapist, here in this moment. I mean, I began asking people for coffee that I met at Eden's special education classroom. Like a mom would be standing there. I'm like, do you want to go to the playground later, being a little bit bold.
EMILY BRIGHT: What kind of responses have you gotten to this book? Has it helped grow your village at all?
EMMA NADLER: It's actually been amazing for my village. People who know me even have said, wow, I didn't know it was quite like that, and then have even shown up more. I've met people through this online and who've reached out and said they've had similar experiences, which I love getting those notes. I love hearing that maybe somebody had the experience of reading this and did feel connected and resonated with the story.
EMILY BRIGHT: Well, it is a beautiful book, and thank you for sharing it with the world. And it's one of those truths about writing that feels counterintuitive, which is the more you drill down into your very specific personal experience, the more universally relatable it becomes.
EMMA NADLER: Thank you. Yeah, it's just so great to talk about it. And when I was in the hardest moments, I thought I really want to make something of this that feels bigger than myself or my family. And so it's just such a delight to get to have it out in the world. It really is enlivening for me.
EMILY BRIGHT: Emma Nadler, thank you for talking with me.
EMMA NADLER: Thank you so much for having me. This has been a total joy.
CATHY WURZER: That was Emily Bright speaking to psychotherapist and author Emma Nadler. Emma will be speaking about her book, The Unlikely Village of Eden, tomorrow night at Washburn Library in Minneapolis. By the way, there are a lot of good resources for Minnesota caregivers, including the Wilder Foundation Center in St. Paul, part of the area there off of Lexington. They've got several support groups for caregivers, including one for adult children caregivers. You can check it out by going to wilder.org or by, of course, googling Minnesota and caregivers. Some great resources pop up that way as well.
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