INTERVIEW: Jessica Fein, Author of Breath Taking: A Memoir of Family, Dreams & Broken Genes

Interview by Morgan Baker

Within the first pages of Jessica Fein’s memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes, (Behrman House, May 2024) the reader learns that Fein’s daughter, Dalia, has died.

Breath Taking is Fein’s story of creating a family, taking care of her daughter, and creating joy for Dalia from the time of her diagnosis at 5 to her death at 17. There is a lot of loss in this book, but you’ll be surprised by how much love, joy, hope, and even humor is also there. Breath Taking celebrates life.

Reading Breath Taking was as if Fein and I were sharing a cup of tea and Fein was sharing her story about how she not only survived all the losses she encountered, but the lessons she learned from Dalia on being present and finding joy in life.

Sitting in what was her daughter’s room Fein talked with me over Zoom. Behind her, the walls are painted a soft green with art hanging. She showed me the track in the ceiling from which a hammock hung to help Dalia in and out of bed.

Fein said she feels her daughter’s presence in here. ”It’s got a beautiful spirit and energy for me,” she said.

She talked to me about the journey of writing the book, and the journey she has been on as she grappled with loss and caring for her daughter. Dalia, who died two years ago, was compromised by a rare degenerative disease: myoclonic epilepsy with ragged red fibers or MERRF. She spent most of her life with a trach and a feeding tube. There was no cure.

When Fein speaks about her daughter, there is sadness and longing, but also a sense of gratitude and love for Dalia.

In addition to the memoir, Fein has a podcast called “I Don’t Know How You Do It” where she interviews a wide range of people on how they get through the tough stuff in their lives, how we process and manage our difficulties and absorb our grief. She writes a column for Psychology Today, and other work of hers can be found in The Boston Globe, HuffPost, Scary Mommy, Zibby Mag, and more.

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MB:  Thank you for taking the time to talk with me. I wanted to start by saying congratulations on the book. But it makes it sound like I’m congratulating you on having a challenging experience.

When I finished the book, I thought, ‘Oh my god this is a love story”. Then I went back to the beginning and read your introduction that tells the reader your daughter died, and that the book is not about that…it’s a love story. I was right!

JF: I love that. I love that came through to you without you having internalized it from the beginning. That’s so important too, because it is a story that is obviously tragic and a story of loss, and hardship. But it is a story about love. It’s a love letter to the whole family.

On March 11, 2022, my daughter Dalia took her last breath. But that’s not what this story is about. It’s both the oldest story in the world, and it’s one you’ve never heard before. This is a love story.

MB: You started the book before Dalia died?

JF: Yes, I did. The book was done, with an agent and out on submission. It ended with the Bat Mitzvah scene. Before the epilogue I say, “Once upon a time, this is how the story ended.” With her up in a chair in the synagogue at her Bat Mitzvah.

There was a conversation between the publisher, agent, and me about whether to put something up front that says my daughter died. The concern was no one would pick it up. No one would want to read a book that’s going to be sad.

It’s very important to me that this isn’t about my daughter’s death. It’s a book about her life. That’s such an important distinction.

MB: How did the book begin?

JF: I started writing essays about her diagnosis. This was before she got very sick. I love essay writing. Some years later, I was sitting by Dalia’s bedside and I just decided I would write a book. I wrote a lot of essays about Dalia and her life. So at first, I thought maybe it would be a collection of essays but the more I got into it, it didn’t feel that’s what it wanted to be.

MB: How long did it take to write the book that ended with the Bat Mitzvah?

JF: I wrote a draft of the book which took maybe a year. And, I thought…Oh this is great and I’m going to submit and ta da! I submitted it to two agents, and of course, they were like the biggest agents in the industry, and the book was a shitty first draft. But I didn’t know that then. After the two agents rejected it, I decided it wasn’t meant to be and I put it in a drawer. My husband laughed, and said “you’ll come back to this.”

Right before Covid hit, about a year later, in the fall, I decided to revisit the project. Dalia died in March ’22.

One of the things I learned through this process was really about editing. Going back in and making it stronger each time was real learning because I wasn’t accustomed to that.

MB: Did Dalia know you were writing the book?

JF: I don’t think so. She was quite sick and the last couple of years were very, very, very rough. Maybe she knows now.

MB: One of the things that struck me reading it, was that I felt like I was sitting down with you and you were telling me the story of your family…some of which is very sad, but some of which is really joyful and lovely. Even the sad parts were full of love.

JF: Thank you for saying that. I love that.

MB: The Dalia story is obviously the story line all the way through, but there were these other losses. Like your mother, your sisters, your father, and in the beginning, infertility. I was thinking this is not okay. By the way, I fell in love with your father. This man is so awesome.

JF: He was so in it with us. He was so present. We were in this together. His death hit that much harder because we weren’t expecting it. We were laser focused on Dalia. It was like Boom. And then my sister, Rachel. I was her main person, and I thought, we’ll just figure this out. We’ll solve it. But sometimes, the situation just can’t be fixed. The question becomes, what are we going to do along the way?

MB: You are a fixer. I’m a fixer. I think a lot of mothers are fixers. But there’s a spectrum of fixing. How do you resolve the fact that there are some things you just can’t fix?

JF: My husband was the most competent, brilliant, and generous caregiver I’ve ever seen, and the relationship between him and our daughter is the most spiritual thing I’ve ever seen.

Our skills and our approaches definitely complemented each other. But there is something to be learned from his ability to be present. At some point I was still fixing – but it was a very different thing. I wasn’t thinking I’m going to cure this disease, because that is fantasy. There’s a lot of micro moments that need fixing. Maybe it’s not fixing, it’s creating. I might not be able to fix how she’s feeling physically today, but I sure as hell can create as gorgeous a day for her as possible.

MB: You wrote that 50% of marriages fail after a child dies. Why do you think yours didn’t?

JF: Ours didn’t, because first of all Rob is the secret weapon that made the whole thing work. This was not a new relationship. We’d been together a long time, and we have such huge respect for each other. Also, we’d been through shit together by the time this happened. We had been through infertility, the sudden loss of my sister, Nomi. We really understand each other.

The biggest criticism I got on the book was ‘you’re making your husband into a saint.’ I don’t think he’s a saint at all, and I hope you know I don’t portray him as a saint. When I look at the intensity of the situation, I can see how it could so easily pull people apart. You can withdraw or blame, and that’s just not who we are.

MB: A lot of the book is written with Dalia front and center, but there are all these other satellites cruising around. I thought the writing about Rob was beautiful and I didn’t get the sense he was a saint, but that he was really loving and compassionate and very there.

JF: I’m glad that you didn’t get the sense he was a saint. None of us are saints, but he is such a present human being. He knows how to be fully where he is.

MB: People also grieve differently. How do you give the space to each other when your process is so different?

JF: That is a beautiful question. I’m reading a book by Jonathan Foster: Indigo. He said, ‘Grief is a longing for home.’ I loved that. The grieving thing is huge, huge to me because a lot of the work I’ve been doing is in the grief space. I have learned so much about the different kinds of grief that I just didn’t know about. The whole notion of ambiguous grief, that it was more than okay, kind of expected that we would be grieving while our daughter was still alive, which at first seem to be such a disservice to her.

Rob and I deal even today with grief in very different ways. One of the things that we did all along is when we got to the place where we really needed to talk something or go to the dark place, we would ask each other “Is this a Good time?”

MB: You never know what other people are struggling with. Everybody has something. How do you integrate all you’ve lost into a life that, to an outsider, seems quite joyful? The other thing about grief from my own experience is it doesn’t go away.

JF: That’s why this notion of stages does such a disservice. It won’t go away. Nor do I think it should. I grieve my sister who died when I was 27. That was a long time ago and I miss her and I long for her, and I grieve her every single day. And God, I would feel horrible if I stopped missing her and thinking of her which is really what grief is. Right?

What I look for is how it integrates. It’s part of me. It is part of everything. It’s woven itself into my DNA: the absence of the presence of my people. I feel I am honoring my daughter in living a certain way. I just observed her, and learned from her, because nobody had more of a reason to be angry. But she was smiling. She was still finding joy.

I’m here. I’m carrying them all with me, right? It’s like you said you don’t know what’s in somebody’s backpack. My invisible backpack is very crowded. Part of it is just constitution. I am a hopeful person. I am an optimistic person. That to a certain extent is just the crux to my being.

MB: You speak of what you learned from Dalia. What I took away from the book which I found inspirational, is that Dalia did have this joy. She was in a bed, couldn’t talk, or eat. But she danced with her shoulders.

JF: I love that. Monday was the two-year anniversary of her death. Today, we got a letter from the head of neurology at Mass General. She said Dalia’s memory lives on and influences how she cares for children every day because of Dalia’s courage and our family’s courage. Dalia just had this energy she put out there that captivated people.

MB: I wasn’t fortunate to ever meet her, but I feel like I did. Through the book, I got to know her. She clearly is a part of your life. I think anybody who reads the book, it’ll affect how they view things.

JF: Thank you for saying that.

When you have something and you’re robbed of it, it’s hard. I feel cheated. I want to know who healthy 19-year old Dalia would be. I feel cheated that I lost my sisters. But I feel sure as hell blessed that I had them, and that I had the relationship with all of them that I did.

MB: That’s the thing. You can have both at the same time. It’s hard to hold both.

JF: I think it is about recognizing what I had. I’m so profoundly aware of that, and I had the practice of how do you hold the joy and the sorrow together in all those years when Dalia was sick because it was on me to create her childhood. It was a real practice of how do we create joy?

She wanted to just be a kid. She was right there in front of me, wanting to be a kid and wanting to laugh, and wanting to love, and wanting to sing and smile and dance with her shoulders…If you decide that you’re going to be the conductor of all that, it shapes you along the way.

MB: How do you make sense out of something that has no sense to it?

JF: When people say everything happens for a reason, Foster says, only if the reason is randomness. Randomness by definition means there’s no reason. There’s no sense in what’s happened to me, but boy there’s no sense in what happened to the people I’ve lost. It’s my story because of what happened to them. I could sit around and go this isn’t fair to me, but now you gotta figure out how to carry on. There’s no reason. It’s a roulette wheel.

MB: I want to ask you about the structure of the book. How did you come up with the four sections? Mother May I. We All Fall Down. Ready or Not. Star Light Star Bright.

JF: I really had that in my mind. At the beginning part one about fertility – I had to cut 75% of it. I think it might be a mini book. That was my favorite part of the whole thing, maybe because I had more distance. I also originally went much more into our experiences in Guatemala. I was there five times for these adoptions. That to me was us making a family. That felt like part one. Breaks my heart I had to cut so much. It’s how I think of the chapters of our experience.  There was another chapter which was the two years of COVID, where she was so sick. I condensed that in the epilogue. Things really got very still and very quiet for some time.

MB: I’m sorry.

JF: Yeah, very hard.

MB: You write about MERRF being a progressive disease, but in this case progressive means something different than what we generally think of.

JF: It’s also called degenerative, so you can hear either one. But they’re saying the same thing. The disease will progress. That was strange all along with Dalia, because she was learning and losing at the same time. She was growing and learning things, but she was also losing functionality. I think there is a particular brand of cruelty with a degenerative disease. When you measure them against their peers and then their younger siblings start to outgrow them. That was such a flip. I had Dalia feeding Theo when he was a baby, and then I had Theo feeding Dalia. All of that is out of order.

MB: Have your boys read the book?

JF: I really try to create a space for them too. When people ask me what’s your regret. I feel we did everything we could for Dalia, but I don’t feel we did what we should have in terms of honesty with the kids. We tried so hard to put on that strong front.

MB: You do a really good job of showing how whatever challenges anybody has, you have to keep moving forward. I felt like the writer took a very honest look at herself, which I appreciated. And you have some funny things in here.

JF: I love hearing people say I just didn’t expect to laugh. Good, because this book isn’t meant to be to pull you down. It’s meant to have you feel everything, like you’re on this ride. You’re on this dance, you’re twirling, leaping and you’re falling and you’re getting back up. That’s what life is.

MB: What do you want people to take away when they finish reading?

JF: I’d really like people to take away that we don’t have to be totally sorrowful, or completely intent on fixing things. We can have joy and sorrow at the same time and we can be happy even when we’re decimated. That’s been my experience and something I’ve learned through what I’ve been through.

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