Interview with Terry Tracy

WG: Terry, your recent novel, A Great Place for a Seizure, as the title implies, centers around a main character with epilepsy. What prompted you to center your first novel on such an unorthodox protagonist?

TT: I've heard it said that you write best when you write what you know. I have epilepsy. I have had it for 30 years. I decided to use my experience, which I wrapped inside a fictional plot, as the basis for the book. But the real catalyst was reading The Idiot. Dostoyevsky had epilepsy and I always wondered about his portrayal of a person with epilepsy, but I never got around to reading it. When I finally did I found the title-character, Prince Mishkin to be a rather annoying, meek, and humorless. I was irritated because Prince Mishkin is probably the most famous epileptic in literature. Dostoyevsky fed all those notions associated with a person with epilepsy as a victim, martyr, and a helpless suffering soul. One day I wondered, what if I were to write a book about a sarcastic epileptic? I decided to make a character, Mischa Petra Dunn, into the complete antithesis of Prince Mishkin. She is a woman with a biting sense of humor and she's definitely not an idiot. She is someone you love to love, love to hate, or want to get the hell out of her way (as some readers have indicated on Amazon). She is confident and self-reliant. Most importantly she doesn't perceive her epilepsy as a source of shame, as Mishkin does, but rather as part of her identity.

I'm self-conscious about how utterly pretentious it sounds to say that The Idiot 'inspired' me. In a conversation about literature, I usually get slammed with comments like: "Are you serious? You haven't read X? Are you kidding me?!" In fact, that happened last week when I told someone that I had never heard of her favorite author. It was in New York and for a minute I felt like I was in a Woody Allen movie. If someone had called my novel 'trivial' I would have started looking around for the camera. Anyway, people have always told me that I haven't read enough fiction so I've come to acknowledge that I am a philistine in matters of literature. But perhaps this experience with Dostoyevsky should wake me up to the fact that it wasn't one of my history books on epilepsy that inspired me to write and create a character, rather it was visceral indignation prompted by a work of fiction. That imaginary character prompted me to write about another perspective of life with epilepsy. Prince Mishkin inspired a character like Mischa. Oddly enough, because of this project I've come away with a great deal of respect, perhaps even a bit of awe for the art-form of the novel. Perhaps now I'm less of a philistine in my opinion of fiction, but my reading is so far behind that I'll always get that retort: "Are you serious, you haven't read X?"

WG: It's interesting that your reaction to Dostoevsky's The Idiot was the catalyst for you and, I think it sheds a bit of light on Mischa's name, if not her character. One of the things that I think disability literary scholarship tries to do is to show just how the portrayal of disabilities in traditional literature creates negative and stereotypical images of people with disabilities contribute to and reinforce common perceptions. Naturally, creating alternatives in fiction as you've done is one way of offering a counterpoint to these images, but I'm wondering if you have ever considered writing an essay or scholarly article about The Idiot, explaining just why its portrayal of epilepsy is so troublesome.

TT: I never thought of writing a journal article on The Idiot. But also, perhaps I would stay away from a formal literary judgment of Dostoyevsky out of respect. This portrayal of an epileptic might have been his way to exorcise his demons. I really only feel entitled to have my own opinion about epilepsy and life with a disability. I have a right to enter the conversation, but I do not have the right to condemn Dostoyevsky's relationship with his epilepsy. However, I do feel entitled to react through a novel, to enter this dialogue about life with epilepsy and let people see another portrayal and judge for themselves.

WG: Perhaps we can distinguish between making a literary judgment on Dostoyevsky's writing and the way in which his portrayal of Prince Mishkin might affect a reader's view of epilepsy. You mentioned yourself that you were irritated with the characterization. What was it about Prince Mishkin that you think might send the wrong signals to a reader who did not know much about epilepsy?

TT: That's a good point. I suppose what I disliked most about Mishkin is the fact that he was such a rug. He let people walk all over him. The epilepsy, or rather his shame over it, was the primary source of his vulnerability. After I read The Idiot I went back to my comfort zone of non-fiction and looked up some literary criticism of that work. There seems to be wide-spread agreement that Mishkin is a Christ-figure, that he is suffering soul, a living sacrifice. In the novel the others compare their lives to his unfortunate status as 'an idiot' which was the common word for an epileptic at that time--in Russia, in Europe, in the United States, essentially in the Western World. Mishkin sends the wrong signal in considering his epilepsy as a source of shame. Also, this notion of an epileptic, or rather anyone with a disability, as a living symbol of misfortune is repellent. When someone sees a disabled person or hears about a person who was disabled by an injury or a child with a congenital disability, I have noticed a common reaction of 'Ufff, thank God it's not ME.' A disability is not a blessing or a curse. It exists. It is not wrong, it is not right. It just is. A disability is part of the human condition. I think Mishkin represents the notion of epilepsy as a source of shame and a curse. That is not a good framework for how society should perceive epilepsy. The Third Reich and eugenics movement in the United States proved that. Epileptics were on the list of those with disabilities who were targeted for extermination during the Holocaust. In the US, in many states, it was illegal for a woman with epilepsy to have a child until the early 1970s. In institutions for people with disabilities it was common practice to forcibly sterilize women with epilepsy. This is just an example of how a government can extrapolate from that notion, that epilepsy is a shame and a curse, and turn it into abhorrent policy. But that's on the macro-level. On the micro-level, Mishkin's vulnerability, as a result of his attitude towards his epilepsy, makes him a victim and that is never a good frame of mind for an individual, let alone an individual living with epilepsy.

WG: In addition to being a woman with epilepsy, Mischa also comes from an Hispanic background, something that in the United States carries its own problems. Why did you decide to have Mischa be from a Spanish speaking family?

TT: I think people can often identify with 'outsider' status in terms of race, sexuality, and religion. However it is more difficult to understand the 'outsider' as a person with a disability. That's why I wanted to give her another 'outsider' identity as an ethnic minority. When people can identify with her on those terms they begin to see the similarities. From that familiar notion of understanding racism they can travel that road to understanding the challenges that face someone with a disability. This is especially true for a disability like epilepsy that still carries a stigma today.

WG: You mentioned that you drew on your own personal experience with epilepsy in writing A Great Place for a Seizure. Can you give some specific instances in the novel where you made use of your own experiences?

TT: Well for one, some of the auras are my own. The explanations of the migraines and those sensory warnings that an epileptic can get right before a seizure are drawn from my experiences. Also, I did live out some of the scenes in the book. For example I did have a school principal who told me that I should not run for student body president because of my epilepsy. Also, every single doctor's appointment in that book is based on real-life appointment. Those were all my experiences: a neurologist who compared me to a ditch-digger, twenty-minute appointments every three months with neurologists who prescribed random anti-convulsant cocktails, and the constant recommendation to have brain surgery as the final solution. So many readers with epilepsy have told me how much they identified with the book emotionally and they always mention the scenes with the neurologists. They resonate with so many. That surprised me. I thought those experiences were my own. Also the character has some seizures in the same places where I've had seizures. One bizarre place was at Cambridge University. I had a grand mal seizure in the middle of a class. From what I heard afterwards, the very distinguished Cambridge don, a well-known history professor, was shaken-up by the episode. The faculty secretary had to take over the crisis. The medics didn't have the equipment to take me down several flights of stairs. So she went through the classrooms and found a big guy, a rugby player on the university team. He carried me over his shoulder, down the staircase. I was unconscious, but people told me what happened later. I put that scene in the book. It would be too 'Hollywood' to have the rugby player as Mischa's love interest. She ends up with a physicist who stays up with her that night, taking care of her after the seizure. In real life I ended up with a mathematician who did the same. I'll stop there or spoil the rest.

WG: It's heartening to hear that you have had such a positive response from other people with epilepsy in terms of your book resonating with their own experiences. I imagine it must be gratifying to know that you given voice to a lot of the concerns of others with similar experiences. What has been the response to your book by readers who knew very little about epilepsy? Would you say that overall the book has gotten good reviews?

TT: Many readers who admit that they knew very little about epilepsy have called the book an incredible learning curve. They remarked at how they felt educated and entertained at the same time. Those comments have been very gratifying. From the start one of my goals was to inform about epilepsy, everything from first-aid to history, medical treatments, and current research. As a former journalist and someone who dealt with facts in my job at the State Department it was easy to write non-fiction because you knew you had a captive audience. People needed the information and so they had to read the memo, the article, and the cable no matter how boring it was. However, in fiction, a reader can throw the book down the moment it begins to bore them. That makes a writer of fiction much more of a tactician in trying to maintain the reader's interest. I realized that I had to wrap information inside an a page-turning plot, transmit facts in dialogue between interesting characters and sprinkle them in without being too heavy-handed. In order to relay that information and not lose readers' interest I think I kept myself in mindset of a Sesame Street producer, constantly asking myself 'How can I fascinate AND teach?' I suppose that means that the two most influential factors in writing this novel were Dostoyevsky and Sesame Street.

One misunderstanding that I've seen a few times in readers' comments and reviews is the question about why there isn't more about Mischa's relationship to her epilepsy and how it defines her in every situation. A few have complained that these sub-plots suddenly appear that have no relationship to her epilepsy. Actually, that was intended and some people 'got it' and others did not. I intentionally wrote the novel as a string of short stories in which epilepsy figures as a main element of the story in some and then in the background in others. That's meant to show how a epilepsy fits into a person's life. It's part of us, not all of us. We cannot afford to constantly dwell on our epilepsy, we could, but that way lies madness. I took on an episodic form of story-telling to show this as much as I could. In the typical narrative, one plot in constant progression towards one resolution, epilepsy would have to figure in constantly and every character would have a relationship to Mischa and her epilepsy. However in this book, what I call my 'novelory', a mix of novel and short-story, some of the characters do not deal with Mischa as 'an epileptic', they're just not part of that story in her life. She's living out another story with them, not one related to her epilepsy. Some people did get that, but others wished that I had shown a microscope of exactly what Mischa was thinking about her epilepsy in every story. Those readers complain, but frankly I think they would have put the book down mid-way had I done what they had suggested. It would have been too boring. Instead they finished it, and what's interesting is that they complained that they wanted to know more about epilepsy. Perhaps I should begin to see those comments as compliments instead of complaints.

Overall I think I can safely say that my book has stayed in the 4 star region on the Amazon spectrum. In individual reviews I have seen the occasional 2 and 3 stars. I'm looking forward to a review that is going to appear in Epilepsy & Behavior by an eminent neurologist in Denmark, a former president of the International League against Epilepsy and, get this, Dostoyevsky scholar. I don't think that one will be very complimentary. He and I both had a bit of a back and forth by e-mail when he informed me that he had finished my book and had a few opinions he would like to share with me. He wrote that it was clear that I had an 'ax to grind' with doctors. I wrote back that it was probably not an 'ax to grind' but rather a 'a story to report, one that neurologists do not want to hear.' After a few more e-mails he told me that he did write the review and to look out for it in an academic journal in the coming months. The editor of the journal is at Harvard and wrote that it's probably going to be in the April edition. I am particularly interested in that review, not that I'll take it too seriously considering my e-mail exchange with him, but my curiosity is certainly piqued.

WG: I understand that you've been in discussion with Tom Couser about your novel. Couser, of course, is know for his work in disability life writing. What was his reaction to your use of the novel as a genre for portraying disability?

TT: I sent a review copy of my novel to Tom Couser and was very grateful that he was willing to read my novel and gave me his impressions. I think his primary reaction was curiosity over my decision to write a novel vs. the traditional memoir used for many disability narratives. He said that I had the writing skills to pull off a readable memoir which, coming from the disability narrative eminence grise, was quite flattering. I explained that I preferred the novel because it gave me some degree of privacy. Moreover the novel format gave my writing plot and pace. A book of my life would be boring. With this novel I used an episodic format to show that life for an epileptic is much more than her epilepsy. A memoir about life as an epileptic would just show my life as an epileptic. I think that fiction gave me a lot more freedom to explore the truth more deeply than an actual memoir.

WG: Other than Dostoevsky, were there any other novelists who wrote about disability that influenced your writing?

TT: I always liked Harper Lee's To Kill a Mockingbird. There is real genius in her ability to write a slim novel with such innocence, clarity and courage while addressing issues of racism, rape, child molestation, disability, single-parenting, and gender-roles through the eyes of a child. Ignoring time, I think Tolstoy could have learned a thing or two from Lee. I still greet people with "Hey." The habit started when I was 13. I liked the Scout character so much that I decided I would greet people just like her. Enough adulation. I only realized later that Lee had a character with a disability in Boo Radley. It's never clear what Boo 'has' but it probably is what is now considered a learning disability. His reputation, his circumstances and his interactions with the children are discussed but not his disability. Later on in the novel he becomes a hero. I admire how she treated his disability as merely one factor that informed his character and is part of the background. Something like the neighbor who is trying to quit her morphine addiction. Despite Boo's physical confinement by his family, he's an active participant in the novel and the lives of the children and even becomes a hero.

WG: What are your writing plans now? Are you thinking of another novel?

TT: I only had one novel in me and it was a veiled memoir. I don't have enough imagination to create another novel. I'm returning to my comfort zone of non-fiction. I'm preparing an article for submission to a journal in disability studies. I want to compare what Couser identified as the disability narrative to what Arthur Kleinman has identified as the illness narrative inside of the field of Narrative Medicine.

In 2000 Rita Charon, a professor at Columbia University Medical School, published her book Narrative Medicine. She made a strong case for why medical schools should teach their students to understand their patients by reading stories of illnesses and learning how to elicit them from their patients. She wanted to teach compassion in the application of medical skills, to bring more humanity to the practice of medicine. The movement is admirable and it is taking off. There are courses in narrative medicine at some of the top medical schools in the country. In my article I would criticize the practice of subsuming the disability narrative to the illness narrative. The writing in that field talks of 'illness narratives'. At best, stories about disability are often not distinguished as different from illness narratives. At worst they are considered a sub-genre of "The Illness Narrative". In my article I would like to point out the structural and thematic differences and stress the ethical and medical implications of making the mistake of treating a disability like an illness. If medical students are taking the time to study stories of patients I think it is commendable. However they need to understand those stories inside the right context. A patient with a disability cannot be seen or treated like a patient with an illness. The differences in their lives can be seen clearly in the differences in their narratives.

WG: Terry, it's been fun discussing A Great Place for a Seizure with you and I want to thank you for taking the time for the interview. Is there anything else you would like to comment on that you think we may have left out?

TT: I think you covered all the bases. I just want to thank you for welcoming me into this fold of disability literature. I thought I was just writing a novel. You and others have made me realize that I am part of a genre and a vibrant movement of disability rights. I feel like I've found my tribe.