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.
Understanding how people live with disabilities has engaged me since my father had a stroke. I grew curious about the gap between me and my father, and my father and his old self. I began exploring this gap through writing essays for a disability rights newspaper about my father’s, and my family’s experiences. I had the chance to snuggle close to another physical change when my husband had a bad work accident and almost lost his hand. I wrote about that until I felt my words were too invasive, and asked my editor for other assignments. He suggested I interview people, and I’ve had the chance to profile a number of people with brain injuries, an English teacher with MS, and a blind man who climbed Kilimanjaro and kayaked the English Channel. This month my assignment is to write about a deaf drummer, Dame Evelyn Glennie.
Reading is another way I try to bridge the human canyon between my temporarily able-bodied self and this broadly defined other. I’m not well-versed in the growing field of disability literature, but I am growing familiar with pockets of writers who tackle the subject of their disabilities. Poet Peggy Shumaker wrote a captivating and lyrical memoir, Just Breathe Normally that touches on moments from a nearly fatal bicycle accident and the slow process of recovering her physical and mental functions, including the very act of writing.
I fell for Anne Finger’s flat, frank self-examination when I read Elegy for a Disease: A Personal and Cultural History of Polio. Her assessment of her life with a disease, and the life of that disease, written in a very immediate present tense, brought me right into her experiences.
This same quick personal style grabbed me at the beginning of Anne Finger’s collection of short stories, Call Me Ahab. Her fifth title and the winner of the Prairie Schooner Book Prize in fiction, the book imagines disability in the lives of many real and literary figures. As readers we know of Helen Keller from her teacher’s perspective, of Captain Ahab’s monomania from Ishmael. Finger serves these stories, and those of other disability icons, from the eye of the beholder, confronting ideas we are spoon-fed as a culture, that Frida Kahlo is sexy, but Helen Keller is a tamed animal.
Finger is a talented storyteller, delivering voices and situations with smooth conviction. The scenes she creates jump time and place without jarring the reader. An imagined Vincent Van Gogh, the lead character in “Vincent” traipses between Van Gogh’s lifetime and a modern New York City, where the painter’s brother Theo leaves him to the whims of the social services system. “Goliath” recasts the biblical tale of David and Goliath in a post-apocalyptic manner, dotted with habits and phrases from our present; a renewed medievalism carries its own odd language and realm, peppered with remnants of our destroyed civilization, like announcements of the weather mixed with ancient habits of studying dead animals to understand a person’s disease.
Vincent’s mental illness and Goliath’s gigantism are central to these stories but also incidental; the disabilities sit in the stories as elements that render and support each fiction’s emotional truth. The author is intent on carefully inhabiting her characters. Thus we get to speculate what Goliath might physically feel, and wonder how an artistic genius might have weathered a society with a hostile approach to the package of his person, deficits and gifts.
Graceful sentences, often with awkward or shocking subjects, flow throughout the book, such as this thought the narrator places in Helen Keller’s mind in the first story, “Helen and Frida.”
Her ardent young circle of socialists wants to do away with the sordid marketplace of prostitution – bourgeois marriage – where women barter their hymens and throw in their souls to sweeten the deal.
Later in the same story the narrator states, “When I was a kid I thought being a grown up would be like living in the movies…” The placement of such a universal line in the mouth of someone who deconstructs representations of people who use wheelchairs or are blind takes this story about identity politics and puts the question of identity, which is very much on the tip of the narrator’s tongue, into the reader’s lap.
While elements of some of the stories feel slightly obvious and forced, like the member of a Boston Brahmin family dying of AIDS, and Ahab waxing homosexual in his thoughts, these flaws do not reduce the weight and charm of the collection. Writers manufacture stories, and some parts of even the most deftly written stories will feel manufactured. On the balance, Finger has strength in her storytelling, and hopefully that strength will reach a wide audience.