Last week, I interviewed Sarah Baker, a Cambridge based writer, mother and independent radio producer, about her recent article, “Unraveling My Childhood Asthma: Did motherhood Cure it?”, published on WBUR’s Commonhealth Blog on May 9, 2014. I was drawn to this article because it so beautifully portrays the complex process of integrating illness and loss into one’s life, and how writing can be a part of this.

As Sarah puts it, writing this piece was like bringing her interior world and her exterior world together in public, perhaps for the first time, and this was a powerful experience.

Read Sarah’s piece, and listen to the audio recording of the interview. Sarah is eloquent, honest and brave. She has lessons to teach all of us.

Stay tuned for her memoir!

Listen to audio here:

Photo credit: Susan Lapides

Transcript of Dr. Annie Brewster's interview with Sarah Baker:

Dr. Annie Brewster: So I'm here today with Sarah Baker, freelance writer, mother and a independent radio producer. I wanted to talk with her about an article that she recently wrote called "Unraveling My Childhood Asthma: Did Motherhood Cure it?" which was published on WBUR's Commonhealth Blog on May 9th. I love this article and I think it really is right along the lines of what Health Story Collaborative is about; trying to harness the healing power of stories, so I wanted to talk to you about the process of writing it and what came out of it. I guess as a first question, I was really struck in reading it by all the different roles that asthma played in your life. It set you apart, it called attention to you in life when you might not have otherwise gotten attention, it brought out "sassy pants" which I loved and it was also a constant in your life in the midst of what was otherwise chaotic. So it served many roles, both positive and negative, it seems. I'm wondering if you can speak to that and the different roles that it played in your life.

Sarah Baker: I agree with everything you just said. I was a kid who went through a lot of trauma early and my body responded in a way that maybe my brain didn't know how to. I couldn't breathe. I think my asthma was a reaction to the stress. My mother had died, we moved all the time, and I lived with all of these different families. That is very stressful. Maybe not being able to say out loud, "I hate this" or whatever my feelings might have been. I wheezed and that was where my stress went, to my asthma. I read Joan Didion's essay, "In Bed," about her struggling with migraines and it made me think about my asthma and I started to write the piece. It was through writing that I began to notice how my asthma had been a constant in my life, how it had been representative of the stress. This is somewhat new to me--where I've thought about my asthma from this perspective, as a forty-six year old. As a child I was just trying to survive.

Annie Brewster: I'm really interested in what you said about that you never really consciously thought about this until you started to write about it. I'm really fascinated with the process of storytelling and how that sort of helps move somebody from one place or another. So, can you speak to the process that you went through in writing this and how that helped you and what it meant then to put it out there in a public way and get feedback on it; what that was like for you and what did it take to get to a place where you felt ready to take that on as a writing project?

Sarah Baker: I remember a number of years ago when I started writing, a friend of mine who is a successful writer said, "write what's raw" so I always try to write what hits a chord in my heart. So writing about my childhood and writing about my mother's death is what I tend to write about. This was the first time I wrote about my asthma and it was hard to write about it because I don't have a lot of memory. I had to interview my Dad, I had to do some research, and I had to relive the trauma. I just kept working at [the story] and sometimes felt a little sick after writing but I just kept working. I usually write ten drafts before I show it to any one. I showed it to my husband and he reacted positively. I showed it to a class that I was in and to my teacher and they responded positively. I thought maybe I've struck something here. Then the story sat in my computer for a year; it did. And it was after I started taking a class about the book I'm working on that I decided to send it out. Maybe the year allowed it to percolate so it didn't feel as scary. Once it was out there, the feedback was great. People came out of the woodwork. People that knew me as a kid, that knew me when I had a collapsed lung or people who knew me as a kid who didn't know any of this. They were all very moved by the piece. That was very powerful. My mother-in-law said, "It’s like you've come out"...my interior world had been different from my exterior world; people might see me as this successful or...successful is the wrong word but kind of, um...what is the word I'm looking for?

Annie Brewster: Together…

Sarah Baker: Together... you know, with a lovely house and a great husband and wonderful children and all of that; I have a wonderful life but I had this crazy history that people didn't know about so all of a sudden they know this side of me. That has been really powerful.

Annie Brewster: How come people didn't know about that part of you? What kept you from sharing it before this essay?

Sarah Baker: Well, I think that people at the time knew about it because they could see me being sick but then I think I just put everything, all of these pieces of me, on the back burner and I just kept moving forward, trying to almost erase the past. I think that is probably what happened.

Annie Brewster: Do you feel like there was ever any shame in it?

Sarah Baker: That is a really interesting question. I don't know. Maybe it felt like a weakness or something that I had to put aside? I never even brought it up. I didn't even think about my asthma really until I was writing this piece, thirteen years after my asthma went away. It's only now that I'm beginning to think about my relationship to my asthma and why I might not have talked about it for all of those years. I don't know.

Annie Brewster: It's always a really slow process that we don't necessarily know that is going on or sort of coming into a place where you're ready to write about it or integrate it into your life but, can you name sort of what might have changed in you that made you feel like "alright, I'm ready to write about it"? Or was it all unconscious?

Sarah Baker: The Joan Didion piece gave me permission. I thought, "she wrote so powerfully about something that nobody sees"—migraines--and even though I don't have migraines, I don't suffer from them thankfully, the story gave me sympathy for people who do suffer. I know a lot of people who suffer from migraines. The story made me think differently. I felt with my asthma...I feel when I write any of these personal stories...I have to get over a hurdle at the beginning but then I begin to feel, we are all struggling in our own way, whether it's with loss or trauma or illness or whatever it might be so if I can tell a story, maybe a few people out there in the world can say, "Yes, that was me, too." A number of people responded to my story on the Commonhealth blog, on my blog, and NPR ran it on their blog with their own stories of childhood asthma. It just kind of adds to the conversation of life. I used to feel ashamed about writing these pieces. "Who's going to care?" "Why would anyone care about my life"? But I’ve learned that these stories do resonate. I'm drawn to personal stories whether in books, memoirs or articles... I thought, "Why shouldn't I be a part of this dialogue?" I have a kooky story. I think I can tell it with a little bit of humor or something that will make people keep reading. So, I’m just going for it.

Annie Brewster: Do you feel like writing about it has changed your relationship with other people?

Sarah Baker: Absolutely. Even though I’d written it a while ago, when it came out it was very raw for people. One friend, for instance, stopped me on the street. She's a therapist, and she said, "I'm going to think very differently about the kids I treat that have asthma...a lot of it is from the stress of their homes." Because I wrote the story a while ago, by the time it was published, I was closed off to it. But for people who had just read it, it was still very raw. It was hard for me sometimes to know how to respond because the enthusiasm and the kindness and the overwhelming support was so powerful. I didn't always know how to respond. I just tried to be gracious.

Annie Brewster: Did your children know all this about your asthma and your life and the struggles and your mother's death before you wrote this or was it new for them to read it, or did they read it?

Sarah Baker: They haven't read it yet. I'm wondering when to show it to them. They’ve heard bits and pieces of my story but they haven't read any of my writing yet. I was just thinking today about when I would show it to them. I showed it to my nephew, my brother's son, who is a junior in college. He responded so thoughtfully. I think the article helped him understand his father's story, and helped him understand me. I will show it to my kids when I feel they're ready.

Annie Brewster: What do you think it would take for them to be ready?

Sarah Baker: Well I don't want to scare them. I don't know...maybe I am underestimating them. I have a fourteen year old and an eleven year old. Maybe after this interview, I will go home and show it to them and see what happens.

Annie Brewster: That would be interesting. I'm interested in the motherhood piece and I was really moved by your story of your mother's illness and her death and how that affected you. I'm wondering if you can speak to the interplay between that loss and that pain before the loss and your asthma. What was the interaction? Stress you named already but was there more that...it's all so woven together and complex I know, but how do you think those things played off each other?

Sarah Baker: I'm only beginning to learn about that. But I think they absolutely played off each other. In my piece, I quote Senesa who said he’d had a lot of illnesses but asthma was the worst because it was like “rehearsing death.” It’s intense to think about that. I had asthma before she died. She got sick when I was three and I had my first attack when I was eighteen months old so I had already had it. But to have my mother die and then to have this disease that's "rehearsing death" where I couldn't breathe; there has got to be a link there. I don’t understand completely. I am still exploring it.

Annie Brewster: Yes. I was struck by the image of the two of you sort of in parallel, in different hospitals, but across the city from one another, so apart but together in an interesting way.

Sarah Baker: Yes. It must have been impossible for my father who had a full time job in the navy and had to commute between these two hospitals. My mother was at John's Hopkins because they were doing cutting edge research on brain tumors. She actually lived a lot longer than they expected... and then I went to Bethesda Naval Hospital across the state of Maryland. We lived in Virginia. Sometimes my Dad had to drive over 100 miles a day going between the two hospitals. Right before my mother died, my father was in the hospital for an ulcer. That's not surprising. I had been in the hospital for an asthma attack and my mother was actually, she had been at home and was actually put in my hospital, so she could be near everybody. That's when she died. But I never saw her.

Annie Brewster: I'm just sort of talking off the top of my head here but, in hearing you speak and sort of thinking about this image of "rehearsing for death" and her death, do you think in any way that your asthma worked to keep you sort of connected to your mother in a way? Or does that not feel like it fits?

Sarah Baker: I'm learning a lot about that now and I think absolutely. I think when you lose a mother or a parent early in your life and you don't go through the grieving process, I think you become very loyal to the sadness and I think there is a part of you that unconsciously, because you're little and you don't have the words for it, says, "I'm going to stay loyal. I'm never going to be as happy as you were.” And so, yes... I absolutely think that when you lose somebody when you're little, you make these silent pacts with them to stay loyal to the sadness, to stay loyal to what they went through...to keep them on a pedestal and to hold them in this special place in your heart.

Annie Brewster: Do you think sort of unconsciously maybe you would have felt like getting better and not having asthma anymore would be a betrayal of sorts?

Sarah Baker: It’s risky to say any of this because I did have asthma and I wouldn't want to take away from anybody that does have asthma. But, I had a lot of trauma and maybe this was one of my ways of staying loyal to her. I don't know. This is all speculation. It's just curious now as an adult when I don't have asthma and it went away so quickly once I had stability...I'm just now looking at these questions and wondering, what went on really?

Annie Brewster: I think you're right to say that you don't want to take away from anyone who has asthma, and I was wondering that and I was going to ask you, what is your thought on what role two individuals play in creating their own illness and to what degree are we responsible for that? I know that's a big question and it's really complex but...

Sarah Baker: I don't have any authority to answer that question... I can only tell my own story. This is all speculation. My parents were both smokers; it was a time when people smoked. We lived in a house with wall-to-wall carpeting and you know, it could have been that my environment changed, I don't know exactly and I'm reluctant to say that we create our own illnesses. I'm just looking at my own circumstances and wondering. My son has asthma but it's minor and we manage it. He's never been hospitalized. Maybe, my asthma would've been like his. Maybe I would've had it but it would've been milder.

Annie Brewster: I absolutely agree with you, I am very reluctant to say that anyone causes anything but I think it's a complex interplay between genetics, the predisposition that we have and our environment and our stress and our psychosocial circumstances and all of that. So, of course it's impossible to say. And sometimes I think there is just bad luck and that's a factor. Can you say how maybe having lived through both asthma and your mother's death may have changed the way you mother today?

Sarah Baker: Both absolutely inform my parenting They inform everything I do, not consciously maybe; but, I know I have a fear of loss. Also, I had such a crazy childhood that I’ve always wanted to make sure that my children have a happy, joyful, stable childhood. I've made a lot of choices to make sure of that--sometimes even putting motherhood in front of other choices that I might have made.

Annie Brewster: Are there parts of you that you love that you feel came to you because of these difficult experiences in your life? Things that you're proud of; strengths that have come out of that?

Sarah Baker: Well, I do think that I have resilience and grit (two buzzwords these days). I wouldn't wish my childhood on anyone but I did have to learn how to cope and I learned how to be around all sorts of different people and circumstances. They're positives and negatives to that. I think it made me flexible but then it kind of...you reach a point where you become inflexible because you're tired of always trying to accommodate other people. So, there are positives and negatives.

Annie Brewster: I love the image of you're singing and the sort of juxtaposition of the asthma and the singing and the different ways of using your lungs and your breath. I thought that was very beautiful. Can you tell us more about your singing and how that feels to be taking voice lessons?

Sarah Baker: In the beginning it was unbelievable what a bad singer I was. I was inhibited; I couldn't even get the sound out. It took a long time. After four to six months, my teacher realized that I was probably a little tone deaf so then she did some ear training. Slowly, I've gotten more comfortable and I've been able to access the different parts of my breathing and my voice. Recently, she told me I could sing soprano. What a shocker!

Annie Brewster: Do you feel like somehow, I mean I'd be afraid to take voice lessons, it takes a lot of courage. Do you trust yourself more now? Is allowing yourself to sing...does it have anything to do with trust or letting go? Can you speak to that?

Sarah Baker: Absolutely, it has to do with finding your voice literally and feeling that your voice matters in the world and that you're not embarrassed by it. My first year of singing lessons was about quieting my inner critic. The one that says, "No one wants to hear this." Same thing with the writing, you know. My singing teacher was so gentle and kind. She just kept saying, "Don't criticize yourself, and just sing. I want you to sing loudly and I want you to just go for it and don't think about anything other than that." It was through that process, of just going for it and being completely uninhibited, that the sound started to come out.

Annie Brewster: That's amazing. What made you decide to take the voice lessons?

Sarah Baker: There are so many opportunities to sing in the world and I was never singing. I lacked confidence. I wanted to sing at school assemblies, or birthday parties, or wherever, and feel good about it. So, I just went for it.

Annie Brewster: Do you think that writing about all of this and in a public way has changed your relationship with your father? Is his still living?

Sarah Baker: Yes, he is still living

Annie Brewster: And your brother, you said you had a brother. Do you have any other siblings?

Sarah Baker: Yes. I have a brother. I also have a half brother and half sister.

Annie Brewster: So, has writing altered those relationships?

Sarah Baker: Yes. I think for my brother who has his own business and works very hard, I can write these stories and send them to him. He can relive with me some of this trauma that we just had to run as fast as we could away from. My writing has made me closer to him. I’ve given my dad some of my pieces, not all of them. I'm worried that he might feel hurt by them. One piece I gave him, he responded by saying, "Well, I actually didn't think that paragraph was accurate." It’s all perspective. It was accurate for me and so, I'm sensitive about showing things to him because I'm protective of him but, I also...It's through my writing that I've gotten to know my own story. I'm not blaming anybody at all. I'm not trying to judge them. I'm just trying to tell the story. I'm getting more confident with showing him my work and not worrying. I have some essays, though, that nobody has seen except for classmates or very close friends. I worry that people will be offended by them.

Annie Brewster: Tell me about the memoir you're writing.

Sarah Baker: I had written a bunch of essays like the asthma story and realized I had about forty-five pages. In them, I kept telling the story of my mother and her death over and over but in different ways. Then I read the book "Wave" which is a spectacular memoir by Sonali Deraniyagala. She's Sri Lankan. She lost her whole family in the 2004 tsunami. It's an unbelievable book. After I read it (it took me two and a half hours and it was painful to read but it was so powerful), I thought she's done an incredible service for the rest of us. I learned what she went through, and how she came out and I thought, "Maybe I can write a book that is a legacy of loss." The story of a little girl who has lost her mother and her father who, as I say was "out to sea" (because he was out to sea, literally), and who lived with her relatives - how I carried that loss into my adulthood. I want to tell a story of how we carry loss and what happens when it's not tended to properly.

Annie Brewster: So, it's a giving back of sorts.

Sarah Baker: Yes.

Annie Brewster: You articulate - you say reading "Wave"-I want to go out and read it now-it tapped into something in you and it's that giving back piece that I'm interested in. What do you think, I mean it moved you, but what else did it offer you? Can you articulate that?

Sarah Baker: First, it is absolutely beautifully written so it is a great example of writing and structure. But more than that…she lost her parents, her children, and her husband and I just don't know how anybody could ever survive from that. She paints this picture of how Elizabeth Kubler Ross in many ways was wrong. I don't know if wrong is the right word but The Five Stages of Grief, you don't pass through them very easily. They are messy and they are morphing and in this book you see that. The other part of the book that was powerful for me was that she had a real community to support her. She had friends and relatives there to take care of her and it took a long time. It took a long time to even think about her family that she lost. And then, how she very carefully pieced it back together with memory where all of a sudden she could go back to her house in London and all of a sudden she could begin to think about her husband and then she could begin to think about her parents. That’s the way grief works. It doesn't happen all at once; it comes gradually and in an agonizing way. She describes it so beautifully and accurately. I wouldn't say that at the end of the book that she, you know you never recover, but she's living her life and she's written this beautiful book and she's helping people in the world who have experienced loss. It is brave of her to have written the book.

Annie Brewster: Absolutely. I also think it is really helpful to see an example of the truth, which is that it's messy, it's gradual; you don't always know that you're going through the process when you're going through it. It's not clean and I think that is freeing to other people who are in the midst of it.

Sarah Baker: Absolutely, yes. A family rents her parent's house, for example. They move in and she can't stand that they're living there. She goes to their house at night and rings the doorbell and runs away. She torments them. This is a woman who is a professor at Columbia now, I believe. I mean she's incredibly educated and that is where grief took her. It took her to terrible depths. She drank. I mean she had a real drinking problem for a while. She really scraped hell; she scraped the bottom. Maybe it was what you asked earlier about being loyal to death, to the deceased. Maybe she thought, "I'm not going to have a better life than you are. I'm going to live an equally bad life." Maybe she was unconsciously creating a hell for herself to show her loyalty to the people she loved and lost.

Annie Brewster: That's well said. Also, I think it's so helpful to see the movement; that you can hit those depths of horribleness and then move out of it and I think that is always so helpful to see when you're in the midst of something. That you're not going to get stuck there, that you're going to pass through. So, do you feel like "Sassy Pants" is back?

Sarah Baker: "Sassy Pants"... Yes! I feel like Sassy Pants is... It is kind of sassy to publish an article about my asthma I think and send it out to the world. You've got to be a little bit sassy to put yourself out there like that. Maybe you have to be a little sassy to sing, especially when you're going for those high notes. So, yes, I think Sassy Pants is back and she's breathing well.

Annie Brewster: I love thinking about this image, again, the singing, I just think it is such a joyful thing and it is so freeing. I love this image of you swaying with the music, with the sound bursting out and it feels really hopeful. I'm wondering, do you feel like you're at some sort of transition point where you're more free to dream about the future and what it holds and letting yourself deserve these things...does that feel accurate? And if so, what are the things you're dreaming about? What lies ahead for you?

Sarah Baker: I'm getting there for sure and I think I'm dreaming about being able to... I never even thought I'd be able to write; I didn't think I knew how. I learned how to write in my forties. I took a grammar class. I started at the beginning. I had been an editor, I think I have an ear for language. But, I had never written a story before. It must be about my forties--you start to look at your life differently and see what you want to get done. I have just gotten comfortable thinking about myself as a writer and actually believing that my writing resonates and that it is worthwhile to write and publish. So, my dream is to write this book, to be able to work through all of these different chapters of my life that are hard to work through and figure out a way to tell it so that maybe my story can help other families or other children out there who also suffer from a loss, like the one that I did. That's one dream. My other dream is to be able to be present--to be able to feel the goodness that is all around me because I'm absolutely surrounded by goodness but I don't always feel it. So my dream is to really see what that is like—to feel present all of the time. That would be amazing.

Annie Brewster: Awesome. I'm excited to read your memoir. Thank you.

Sarah Baker: Thank you.