Author Mira Bartok was scheduled to talk to Terri Gross on Fresh Air this past Monday, but because of the attempted assassination of Congressman Giffords, the program focused on Arizona gun laws. Fresh Air featured Bartok and her memoir, The Memory Palace on Tuesday.
The irony of the shift is not lost on Bartok, who suffers from Traumatic Brain Injury (TBI). The artist and writer was hit by a tractor-trailer in 1999. The accident happened nine months after she got a concussion slipping on black ice, which left her brain vulnerable to future wounds.
Recovery from TBI is lengthy, and often incomplete, leaving people with fatigue, confusion about daily tasks, and memory problems. TBI is among those invisible disabilities with which people are perceived as functional because they present as such. This is frustrating for all involved, including the patient who assumes she should be better. Bartok herself needed time to learn that she was changed.
While she received treatment for some physical injuries form the accident, her longterm cognitive problems were not immediately identified. She couldn’t do the things she used to do, like teach art, or draw while listening to music. Eventually, her TBI was diagnosed and she began working with cognitive therapists to develop strategies to handle the new ways her brain works.
Bartok describes her old self as having boundless energy and a sociable nature. She could make art while listening to music and help people when she wasn’t working on her own projects. Now she has to protect herself. Grocery shopping can be impossible because of the lights and the choices. Having dinner in a restaurant with friends might be more sensory input than she can bear, and leave her unable to work on writing or art projects the next day.
These problems are hard to see. I met Mira Bartok at a writers’ conference in 2009. She was part of a panel on brain injury, and spoke eloquently about her struggles to rebuild her writing life. Even from a podium, her warmth and wit are apparent. She’s the kind of person you want to get to know.
When I had the opportunity to interview her for a disability rights newspaper, I fantasized that we might meet at an art museum so I could observe her observing the art.
“In your dreams, Amy!” she laughed.
Such an excursion was out of the question because it would involve driving, and focusing on our conversation in an uncontrolled environment. The day we spoke on the phone, she had no plans to write. Even the phone interview, she said, was draining.
Bartok keeps a memory table in her studio to remind herself of what she’s doing and what she’s done. While writing her memoir, she built a cabinet with a slot for every chapter, and filled it with notes and writing on the topic. The cabinet is cleared now, ready for her next project, an illustrated young adult novel.
“Above my desk are lists of things I can’t remember anymore, the meaning of words I used to know, ideas I’ll forget within an hour or a day. My computer is covered in Post-its, reminding me of which books I lent out to whom, memories I’m afraid I’ll forget, songs from the past I suddenly recall,” she writes in The Memory Palace.
The workings of the mind and the creative process are ripe subjects for memoir, and Bartok’s is not the only book written from a TBI informed point of view. Floyd Skloot, father of Rebecca Skloot of The Immortal Life of Henrietta Lacks fame and author in his own right, caught a virus on a plane that attacked his brain. The poet, marathon runner, and civil servant – Skloot worked for the Illinois Bureau of the Budget – was forced to stop and change completely. His book, In the Shadow of Memory is a tour of the virus, his childhood, and the way he reassembled a sense of self.
He followed this with The Wink of the Zenith: The Shaping of a Writer’s Life, a map of how he became a writer, and how he became a writer again, after his illness. Skloot’s persona on the page is very human and endearing, worth reading whether you are trying to figure out how to be a writer, or just trying to figure out how to be alive.
My interest in brain injury and writing is personal. My father’s first set of strokes didn’t hit his writing center, and he elegantly described his rehabilitation in a newspaper column. When, two years later, he had another series of strokes, he lost the ability to write. He used to be able to weave together nostalgic storytelling and current events and to sculpt his rage into thoughtful arguments on the op-ed pages of local papers.
My desire to help my father drew me to that panel where I met Mira Bartok. I took home hints from Linda Hogan and Allison Hedge Coke, other writers who learned to live and write in the wake of brain trouble. I left the room inspired by the way poet Peggy Shumaker’s husband helped her heal and rebuild her ability to write.
The Alaska State Writer Laureate, Shumaker was riding her bicycle when a kid on a four-wheeler crossed into the designated bike path and almost killed her. Just Breathe Normally is her memoir in poems, and the poems span her childhood through her recovery. The book marks her path from being unable to read to being able to write again, and from anger to forgiveness for the person who hurt her.
I took what I heard from these authors, and tried to bring it home to my father. I told him about the steady application of self to task, and the slow progress that these writers made. I talked with him about stories he wanted to write, and helped flesh out some ideas.
His productivity has diminished since his last strokes, but he keeps at it, and the newspapers occasionally run what he writes.
I thought of him for another reason as I read The Memory Palace. The illustrated memoir unfolds the details of Bartok’s mother’s schizophrenia, and begs the question of what we owe our parents.
Bartok’s mother, Norma Kurap Herr, was a gifted pianist who slid into mental illness early in her daughters’ lives. Eventually, the two sisters changed their names and got unlisted phone numbers to insulate themselves from their mother’s paranoid intrusions. She wasn’t just suggesting what they wear, but visiting their jobs and threatening their employment, and making harassing phone calls that could number a hundred a day.
After Mira and Natalia’s attempts to help their mother dramatically failed, Norma was homeless for nearly twenty years. During that time, Bartok corresponded with her mother, using a post office box. At the end of her life, a social worker stitched the family together with a phone call, and Mira, Natalia and Norma have a hospital reunion.
We cannot save our parents. They gave us life, and we struggle as adults with how to give them their due. In Bartok’s case, she had to funnel her care and love for her mother into a letter driven relationship. As I struggle with how to help my father and mother navigate this revision of their lives, I am grateful to the writers who share their stories, which are maps, to help us all.
In the fall of 2009, in New York, I tagged along with a group of mostly-strangers after an event as they headed for cocktails. When the person who was nice enough to chat with me told me her name, Rebecca Skloot, I was surprised. “Hey, they’re still passing out your book proposal at my grad school!” I said. We’d both gotten MFAs at Pitt, and while I wasn’t in her department, nonfiction, Skloot’s book proposal was notorious. It was perfect, it was aspirational, and it had been used as a model for other students for a very, very long time.
“So did the book –” I blurted, too late to stop, “ever come out?”
Skloot was undaunted. No! But yes! It was coming out! She had just met with the publisher and the team about its release! It was coming in February 2010! It was going to be great!
And then she told me about HeLa cells (remember them from bio class?) The cells were the first human cells to reproduce in a laboratory. They kept reproducing; they were something like a miracle. They were sent to scientists all over the world; they helped cure polio; they had enabled more scientific discoveries in the 20th century than I could wrap my head around.
And that the woman the cells came from was named Henrietta Lacks. Nobody had really thought about her, the person, once the cells were on their way to making history. That she had died — the cells that reproduced so well had been cancer, and killed her. That her family didn’t know the cells had been taken, and they’d grown up poor, often without the benefits of the health care advances her cells enabled.
She told me, quietly, that decades later, when they first got a phone call about the cells, the family had a terrible misunderstanding. They’d never learned about the things the doctor on the other end of the line was trying to say and thought that, somehow, Henrietta was alive. Alive all that time, but held away from them.
Skloot said she’d gotten to know the family, that because of that earlier misunderstanding, it was really hard to earn their trust. And while that was about all I heard that evening, not realizing that there was still much more, I left thinking, I’ve got to read that book!
So did lots of other people. The Immortal Life of Henrietta Lacks has been on bestseller lists all over. Skloot’s relentless book tour helped; so did Oprah. There is much more to this book — Henrietta’s short life, what happened to her kids as they grew up without a mom, the leaps of scientific discovery (and sometimes wrong turns), and how
Skloot came to feel that this was a story that she had, had, had to tell. Skloot’s tenacity is impressive, and the book is unforgettable.
And I bet they’ll be using that book proposal at Pitt for a very, very long time to come.
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