Breaking Through: Gayle Brandeis Discusses The Art of Misdiagnosis

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I first heard of Gayle Brandeis when some students of hers invited me to their annual alumni dinner with her at AWP in Minnesota. I was struck by their enthusiasm and evident love for their writing teacher. It turned out she had been called away and couldn’t make the dinner so I didn’t get to meet her until the following year at AWP in Los Angeles, where she joined a group of us at the infamous Feminist as Fuck 2016 reading. Energized and empowered by the reading, we went out dancing afterward.

Getting to know her that evening, I understood why her students were so enamored and spoke so highly of her. She danced nonstop, her face flushed, skirts whirling, and no one could resist an invitation to join her. I was honored to have a conversation with her recently about The Art of Misdiagnosis: Surviving My Mother’s Suicide, out today from Beacon Press, which I found to be a deeply reflective and heartrending story.

Gayle Brandeis is an acclaimed author and poet. She has written multiple novels, including The Book of Dead Birds, which won the Bellwether Prize for Fiction of Social Engagement, Self-Storage, Delta Girls, and My Life with the Lincolns, which received a Silver Nautilus Book Award and was chosen as a statewide read in Wisconsin. Her collection of poetry The Selfless Bliss of the Body was released in 2017 by Finishing Line Press. She is also noted for her guide to writing, Fruitflesh: Seeds of Inspiration for Women Who Write. She teaches in the low-residency MFA programs at Los Angeles, at Sierra Nevada College, where she was named Distinguished Visiting Professor/Writer in Residence, and at Antioch University, where she was recently awarded the 2017 Distinguished Alumna of the Year Award.

You can read an exclusive excerpt from The Art of Misdiagnosis here.

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The Rumpus: First, you’ve shown me that it is possible to write into and through wrenching pain of great magnitude, and I’d like to thank you for that.

Gayle Brandeis: Aww, thank you.

Rumpus: The Art of Misdiagnosis: A Memoir comes so close, to quote you speaking to your sister, Elizabeth, in the acknowledgements, to “the blood, and bone, and gut, and heart” of family. I’m fascinated by the sticky wicket that family often is. Can you speak to the role of story in the family? It seems like there’s a dominant narrative in all families, one about the family itself and then one that’s told within the family about each member.

Brandeis: Yes, thank you. My mom really raised me and my sister to think that we were extraordinary. There was part of me that never believed that, that was very uncomfortable with my mom’s narrative that we were very special snowflakes.

There was a culture, or a story, in our family, in which we couldn’t really speak truth if it was negative. We could only talk about positive things. So, the predominant narrative is that everything is okay, everything’s great, we’re all great, and it made it hard for me to be truly myself as a kid.

Through my creativity, I could work with that. My dancing and writing have always been the way that I’ve been most fully myself, and I’m grateful that I did have those outlets as a child.

At the same time, I felt like I had to hide my truest self from my mother in so many ways because I wasn’t always the perfect good girl that she expected me to be. It created this real dichotomy between what I felt I could share and what I was really feeling and experiencing.

To get to the point where I could finally write a memoir and be able to tell the truth about myself and my life and my family was incredibly liberating but it was painful and hard to break through those long-held silences. And to break through the need to be a good girl, which was something I carried for a very long time, and that I was very, very happy to let go.

Rumpus: The details of the story elicited a dim memory of some ancient thing all families seem to carry, some primal wound we’re all trying to heal in the present incarnation. There’s a transgenerational element of trauma. The narrator’s mother, Arlene, attempts in part to heal it through creating a documentary film, which bears the same title as your book, The Art of Misdiagnosis. Tell us about the underlying quest in your mother’s documentary film.

Brandeis: My mom decided that she wanted to make a film toward the end of her life, of course we didn’t know it was toward the end of her life as she was making it. She was inspired by this art that had started to pour out of her in her sixties, paintings that she realized were connected to her family, who she had been estranged from. She had always been an art aficionado, and took us to museums when I was a kid, which I’m grateful for. She was docent at art museums and things of that nature, but hadn’t really created her own art until she was in her sixties.

She had not been in touch with her family for many years, but, somehow, she felt that the spirits of her dead family members were coming to her through these paintings, and that they were sharing the story of these various illnesses that she believed pervaded our family, specifically porphyria and Ehlers-Danlos syndrome.

She was the youngest of ten children. The paintings told the story of several of her brothers who died of cardiac incidents in middle age, her mother who died of a sudden heart attack, her father who had had both of his legs amputated because of diabetes, her sister who had electroshock therapy as a young woman after having what they called a nervous breakdown at the time, and other stories of mental and physical illness in her family.

She wanted to do something more with these paintings, so she decided to make a film. At the time, my sister and I were not happy with her making a film because we had asked her not to discuss our own journeys with illness, which were complicated. Having read the book, you know each of us had faked our own illness after truly being ill. In my case, for a year, because I couldn’t let go of that sick girl identity.

She couldn’t take in that we had faked our illnesses at some point. We didn’t want her telling these lies about us in this film, but she did.

Rumpus: Around that time, you wrote her a letter and said that, though you originally had been ill, you had developed a factitious disorder and had faked symptoms. She was unable to really accept that because part of her quest was to expose these illnesses, which she believed were genetically related, as under-diagnosed or misdiagnosed, including your illnesses as teens, and bring attention to them.

Brandeis: Yes, yes. And she considered it the quest of her life. Through this film, she felt like she was doing important work that was going to change the medical industry. She wanted to make a difference with this film. She believed that these diseases aren’t as rare as the medical establishment thinks they are, that they’re just rarely diagnosed, which may be the case.

Even though I was so upset about her making the film because of how she was furthering stories about me that I knew weren’t factual, I came to appreciate her intention behind the film and her passion. She had no filmmaking experience but she decided to do it and found people to help her.

So, while this is a film I don’t think I will ever put out into the world, I do appreciate the fact that she had this desire to get her voice heard and to make a difference in the world, to raise awareness about these disorders that may or may not have really been in our family. It’s hard to say because she is such an unreliable narrator who would craft narratives to fit her own ideas of the world.

I know several people who have been diagnosed with Ehlers-Danlos syndrome just in the last few years, so it seems that awareness is being raised about these disorders and they’re becoming more commonly diagnosed.

But yes, it started out as art and a way of telling her family’s story, which she had been very much separated from. It created this reconnection with her family in a way that was meaningful to her.

Rumpus: The title The Art of Misdiagnosis is so brilliant and the parallel with your mom’s film is heartbreaking.

Brandeis: Yeah. Once I decided to borrow her title from the documentary for my own project, it brought a lot into focus. I had been playing with the memoir for a while and didn’t have a working title. Then suddenly the illness and diagnosis we’d been given when I was a teenager and that she had believed I was misdiagnosed with was confirmed. I had initially been diagnosed with Crohn’s disease, which she disbelieved, and it turns out that diagnosis was correct.

Once I lit upon the idea of using her title as my own, I realized the many different layers that it spoke to, the fact that her mental illness was never diagnosed, the way we misdiagnosed each other, and the ways that we looked at each other through faulty lenses. It just worked on so many different levels.

Diagnosis itself is truly an art. Especially with rare diseases where it often takes seven, eight years to arrive at a proper diagnosis because people don’t know what to look for, or because the doctors just aren’t being intuitive enough or perceptive enough. Just as we in our own lives often are not intuitive or perceptive enough.

The title The Art of Misdiagnosis kept developing and unfolding the further I went into the project.

Rumpus: The narrator mentions Lying by Lauren Slater. I love that reference because as Slater says about her book, “There’s only one kind of memoir I can see to write, and that’s a slippery, playful, impish, exasperating text shaped, if it could be, like a question mark.” The Art of Misdiagnosis also seems very much to be an inquiry, a question, even a puzzle, and interrogates the nature of truth much as Slater’s does. How much were you consciously inviting the reader to struggle with belief versus disbelief, to engage with that uncertainty?

Brandeis: Oh, my goodness. That is such a good question. I think, by giving my mom space to speak for herself through the excerpts from her film, I did want to create that uncertainty for the reader. I didn’t want to tell the reader what to believe. I’m very upfront about my own challenges with telling the truth at different parts of my life.

Rumpus: There are three threads in the book, excerpts from the mother’s documentary, letters addressed to the mother, and the narrator’s recreation of events, which are chronologically dated. Along with the mother, the narrator herself is presented as somewhat unreliable, which I thought was brilliant because it caused me as a reader to experience the same dissonance and confusion and anxiety that everyone in the family must have been feeling, right?

Brandeis: Yes, we’re all unreliable narrators in a way because we only see our individual stories the way we choose to see and tell them.

I don’t know how much I thought about it consciously, but I wanted to create different levels or perspectives on reality within the book by sharing my experience and revealing the things that I kept hidden, as well as sharing my mother’s voice and letting her speak for herself, inviting the reader to experience her directly versus through my own lens.

Rumpus: Maybe talk to us a little bit about factitious disorders. Give us a synopsis of you and your sister’s teenage illnesses.

Brandeis: I didn’t know the term factitious disorder until I was late into the process of writing the book. A friend of mine mentioned the word malingering, and I knew I had heard it somewhere, but I looked it up and saw that a malingerer is someone who pretends to be ill for some sort of gain. I thought, Oh, that’s what I did. Because when I was a kid, I was very ill with Crohn’s disease, or what was diagnosed as Crohn’s disease at the time, for about a year. Just horribly ill, in the hospital a lot.

Then, after I got better, after I went into remission, I wasn’t ready to be a real teenager. I didn’t know how to be a normal kid in the world. So, as you mentioned, I found ways to fake or mimic symptoms through laxatives, through pretending for a whole other year that I was still ill because it had become my identity.

Later I learned that a factitious disorder is slightly different from malingering, which is done for material gain. The person with a factitious disorder derives some sort of benefit just from the experience of being a patient, and the interactions with other people that result.

As soon as I discovered that, it was so helpful to be able to put a name to what I had. I found Lauren Slater’s book just by chance at this wonderful book store in Los Angeles called The Last Bookstore. I was going through a rough time. It was when my current husband and I were separated and I was kind of thrashing around.

It was a powerful day where I was retracing some of my mom’s final steps. I went to Union Station where she had spent part of her last day and to the cathedral where she had gone for sanctuary the last day of her life. I had an intense desire to connect with her and her final hours.

I entered The Last Bookstore and saw Lauren Slater’s book, which I’d heard about but somehow had never read or picked up, on the shelf and it was almost as if there was a spot light on it saying, pick me up, pick me up. It was like it wanted to jump off the shelf into my hands. As soon as I started reading it, I knew it was the perfect book for me to read at that time, and I think that’s what led me then to discover factitious disorders. The way she wrote about it, that her own factitious disorder allowed her to create her own mythology, to tell her own tale, resonated deeply.

I recently learned that my editor sent her a copy of my book, and that’s so exciting just to think of her reading it because her work ended up meaning so much to me. I’m glad that I was able to quote her because it felt so right and I resonate so much with her story and her own complicated relationship with her mother.

I wish I had discovered her sooner, but at the same time, I feel like I discovered her when I was supposed to.

Rumpus: It sounds like synchronicity. Your sister then also developed a factitious disorder after you.

Brandeis: I didn’t know that for many years; we didn’t share with each other that we had both pretended to be ill. It was after I started allowing myself to be well that she became ill and had these incredible episodes of vomiting, projectile vomiting, where it would literally shoot across the room. She didn’t have to put her finger down her throat, she just willed herself to become this fire hose of vomit.

She had seen the attention that I had received as a sick girl and craved that attention from our mother, and so she followed in my footsteps. It wasn’t until many years later that we were able to share that with each other.

As I mention in the book, in this weird sort of karmic way we ended up switching symptoms in real life so that I ended up developing a vomiting disorder as an adult that was very much real. It wasn’t factitious at all. And she developed colitis, and I had had the lower abdominal stuff as a teenager.

Rumpus: At one point the narrator says she became, “author of [her] own illness. It was the best thing [she] had ever written.”

Early in the story you quote Gaston Bachelard on the source of our first suffering, which he defines as that moment where we first hesitate to speak. We read, “I trailed behind you, and felt something slide shut across the inside of my throat, heavy as a manhole cover.”

The narrator describes an incident that happens when she’s five years old and her mother speaks harshly to her. “It took me years, she says, to pry it back open.” She struggles with her voice throughout the narrative, and voice is so significant in this story.

Brandeis: Yes, that was the primary moment of losing my voice, or shutting off my voice as a kid. It did take many, many years to remove that manhole cover from my throat. It’s still something that I can feel, it tries to slide back over my throat.

I think in some ways that’s why I became a fiction writer, is because I didn’t know how to speak my own truth. I could tell the stories of people I had made up, but didn’t feel comfortable telling my own. It was terrifying to give voice to my lived experience.

When I pretended to be ill, it was a way of creating a narrative for myself, speaking in a way that allowed me to hold onto this image of myself that I wasn’t ready to let go of. And to continue to craft this delicate sick girl who people were concerned about and worried about and admired.

Ultimately, learning to claim my own voice, to claim my own truth, has been so cathartic, so liberating, as well as painful. I feel so much freer and as if now that I have shared these things, I am whole in a way that I haven’t been before because my inside and my outside feel congruent.

Rumpus: Fruitflesh: Seeds of Inspiration for Women Who Write, and your recent book of poetry, The Selfless Bliss of the Body, where we read, “The body is a verb, not a noun,” are both written in and from the body. There’s a real focus on the body in your work.

Brandeis: My undergraduate degree is poetry and movement as artistic expression, meditation, and healing, and so at the time I wrote Fruitflesh I was delving deeply into both dance and writing and finding out the body is where they intersect.

That was such a wonderful revelation for me when I was in college and starting to really work my way back into my own skin. Even so, I realized, starting this memoir, that there were body truths that I had not allowed myself to tap into or acknowledge. It’s a lifelong process of learning and discovering and going deeper.

The body doesn’t lie. I lied for my body when I pretended to be ill, but the body itself is our truth. It’s how we live in the world. I think that as a teenager I separated myself from that truth. I tried to force a new truth onto it, and being able to find my way back into my skin, to claim the truth and the knowledge of the body, to allow it to speak, has been another very healing and important process for me.

Rumpus: That’s so beautiful to think about. Through all the confusion and the dissonance and the competing narratives, the body carries our truth.

And then of course the challenge of, as you write, that manhole cover over your throat and of being able to begin to speak and bring your truth into manifestation into the world, which you’ve done through this book, while also giving voice to your mother and her struggle.

Brandeis: Thank you. I find that as a writer it’s so important for me to tap into my body to figure out where emotion lies. How does emotion register itself inside my skin? How is trauma stored in the body? How do we move through the world in our bodies in a way that carries our stories? How do we let them free?

Writing this book was very much a process of tapping in physically in different ways, seeing what I was still carrying inside my body that needed to be given voice.

Rumpus: The relationship between you and your sister provides some of the most poignant moments in the book. There’s a moment between you after your mother had died when the you are sitting in the backseat of a car, heads lying against the seat, looking toward each other and into each other’s eyes with Asher in the car seat between them. We read, “I feel like I could look into her eyes forever. The sun is turning them green flecked with gold.”

We also read about the “that’s my house game” you played as small children, and how, as you indicated earlier, you and your sister traded places in almost karmic ways. Tell us about the game.

Brandeis: That was a game we created in front of our apartment building. By the front door there were these two platform areas to either side with stairs that went down from each and then a little walkway between. We would each stand on one of the platforms, and we would point and say, “That’s my house!” And then we would run across and get onto the other platform and then turn around in place and say, “That’s my house!” and turn.

We would run back and forth trading houses. It was very much like what we did as sick girls, where I was the first sick girl, and she said, “That’s my house,” and she became that. But it was not only a competitive thing. We’ve learned so much from each other, and she was always really the brave, outspoken kid. I was shy as a child after that one experience of feeling my voice shut down. She would often speak for me, and there were times when I told myself that I needed to embody her courage, to be able to speak out like her.

I wanted to be her in some ways. We would trade places. We were best friends throughout our childhood, and it was when I became a teenager and became ill that we started drifting apart, and thankfully we found our way back to each other again once I left for college. She’s at the heart of my life.

Rumpus: That’s beautiful. I think that love and that bond between you shines through throughout the book.

Brandeis: Oh, I’m glad. It was hard for her to have me write this story. But she realized how much it was me trying to work through my own stuff, and she came to honor that and give me her blessing. I’m so, so grateful for that. I just feel so lucky that we have the relationship that we do, that we were able to talk our way through the pain of it, and that she was ultimately able to be so incredibly supportive.

And I gave her veto power. I told her I’d be happy to let go of certain parts of the narrative if she was uncomfortable, and there was only one tiny thing that she wanted to me change just to make it a bit more precise, but she didn’t ask me to leave anything out.

Rumpus: I saw in the book that you had quoted Gaston Bachelard and got curious so I dug a little and found that he had written a book The Poetics of Space. I’d like to read from it.

Brandeis: Oh, please do.

Rumpus: He says:

Sometimes the house of the future is better built lighter and larger than all the houses of the past, so that the image of the dream house is opposed to that of the childhood home. Maybe it is a good thing for us to keep a few dreams of a house that we shall live in later always later, so much later, in fact, that we shall not have time to achieve it. For a house that was final, one that stood in symmetrical relation to the house we were born in, would lead to thoughts, serious, sad, thoughts, and not to dreams. It is better to live in a state of impermanence than in one’s memory.

Brandeis: Oh, my gosh!

Rumpus: That made me think about how this story doesn’t really offer any definitive answers to the question of your mother’s suicide and the tragedy of her undiagnosed mental illness. There’s some closure at the end, some sense of the narrator’s finding some peace, but there’s no final resolution. The reader’s left somewhat conflicted, as I imagine the narrator is.

Brandeis: Mm-hmm. I had this mistaken idea years ago that people wrote because they had an answer, because they had something they wanted to impart.

I’ve come to realize, through reading, but also through writing this book, that we don’t need to have answers when we write. That the process of writing is so much more about the process of discovery and exploration, and that it’s okay to not have an answer.

Rilke talks about living the question, that you don’t necessarily need to have an answer, and that being comfortable with uncertainty makes life a lot easier. Not necessarily needing an answer, but being able to coexist with that state of not really being sure. That can be a fruitful place to be in because I think once we think we do have answers, usually life will show us that we were wrong.

Rumpus: True.

Brandeis: Not always, but being able to just wrestle with questions and have that be a gift itself. That we don’t have to come to certainty. We can just swim inside of our own questions and inside of our own chaos. Let ourselves be present with our own questions. It can be a very powerful thing.

Rumpus: It also leaves room for diversity of possibilities for each person, and for each person to exist, in a family for example. Rather than for there to be only one way of being.

Brandeis: Mm-hmm.

Rumpus: And it makes me think of people who may read this book who have lost a family member to suicide, and the grappling for the answer, and never being able to come to resolution with that.

Brandeis: Yeah, and I feel like I’ve made peace with the fact that there will never be full resolution, and that’s okay.

For a while when I was writing this book, I thought that once I finished writing it I would have healed myself completely. That I would have been done with the grieving process. That my mom’s death would no longer have the power to hurt me. That’s not the case.

I have come to a new place of peace with it. I feel like I tapped into a new level of resilience in myself that has been really healing and important, and strength. I’ve tapped into a new strength into myself that has become an important grounding place and bedrock for me.

But I still feel the pain of her loss. It can still sneak up and surprise me, catch me off guard and take my breath away.

So, writing is not necessarily the cure-all, but it was incredibly healing. I feel like if I had not written this memoir I would be in a much more painful and a much less grounded place. I feel stronger having written it.

Rumpus: Yeah, and I’m so glad that you did. I think it offers readers a way to contain and honor their own family stories, whatever shape they take, whatever pain they hold.

Brandeis: Thank you. I know that as I was getting ready to write this, wanting to write it but not feeling quite brave enough, reading other memoirs was so heartening for me, just so encouraging. Seeing other people grapple with their own painful stories gave me faith that I could do it, too.

And if I can give that gift to readers, to help readers feel empowered to face their own painful stories and begin to give them voice that would mean so much to me.

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Author photograph © CameraRAWPhotography.


Kelly Thompson's work has been published or anthologized in The Rattling Wall, Entropy, Oh Comely, Dove Tales, The Rumpus, Proximity, The Writing Disorder, Witchcraft, Manifest Station, 49 Writers, and other literary journals. Her essay "Hand Me Down Stories" was recently nominated for a Pushcart by Proximity. She is also a contributor for The Rumpus and curator for "Voices on Addiction" at The Rumpus. Kelly lives in Denver, Colorado and is a member of Lighthouse Writers Workshop. More from this author →