Leah Thomas frequently loses battles of wits against her students and her stories.
When she’s not huddled in cafes, she’s usually at home pricking her fingers in service of cosplay.
Leah lives in San Diego, California and is the author of Nowhere Near You and the William C. Morris YA Debut Award finalist, Because You’ll Never Meet Me.
The Voldemort of the Thomas household
by Leah Thomas
My dad hates airplanes.
He doesn’t hate them for the same reasons many people do. He doesn’t think the aircraft will surely collide with the earth. He’s not especially worried about getting drooled on, or being elbowed, or facing the humid trays of food.
“Every minute of every day,” he confessed to me finally, when we were talking about obsessive thoughts, “I’m worried I’ll have a seizure. Imagine that on a plane.”
The tragedy here isn’t the admission of the fear, or even the fear itself – in a lot of ways, hearing Dad say this after so many years of quiet was a complete relief.
The tragedy is that for years, rather than acknowledging Dad might be anxious about flying because he suffered his first grand-mal seizure the day after a flight, we simply said, “Oh, Dad doesn’t like traveling.”
In a household headed by two social workers, we spent years talking frankly about mental illness and disabilities with such generosity, such thought. A trait I always admired in my parents is the way they see people first and disabilities second. In Because You’ll Never Meet Me, I wrote Ollie’s first interaction with the outside world to reflect the quiet power of this: Liz requests that Ollie say his name before he say his illness.
So how did epilepsy become the Voldemort of the Thomas household? It was a word we didn’t speak, as if suddenly we weren’t the outspoken weirdoes from the woods, but a Victorian family cloistered in some manor, wincing at the mention that illness might exist. (Reading A Great and Terrible Beauty in junior high was haunting.)
Why was it that I’d wake up in the night and hear my dad groaning in the wake of a tonic-clonic fit, tread into the bedroom to sit with my mother while he slipped into heavy snoring, but the next day that scene was hushed out of reality?
We thought Dad didn’t want to talk. We assumed it was a matter of privacy. I don’t know how many times he had seizures we never heard about. Maybe it was another facet of his Englishness, this tendency to suffer quietly.
“But there’s this sort of shame in it,” Dad finally told me. “It makes no sense, but that’s how it feels.”
I know feeling this way is not unique in the disabled community. The world is full of heinous expectations. Stigmas are so pervasive that it takes a great deal of conviction to abandon them.
Many of the stories I’ve written about disabilities, about epilepsy especially, fall into the science fiction genre. This isn’t because I want to conflate reality with science fiction. The last thing I want to do is misrepresent the actual lives of human beings. As an outsider, I cannot speak for any member of the disabled community. To tackle struggles that are so personal to so many, I feel the need for a lens, an access point into the perspective. But I write these stories because like many others, I can’t bear any more quiet.
In my books, my characters constantly refer to the poisonous nature of silence. Moritz decries “letting things fester” and Ollie, in his cabin, can’t bear being surrounded by as many secrets as trees. In the second book, Nowhere Near You, both boys meet other teens who hide themselves, not because they want to be hidden, but because they feel they have to be only partially themselves. In order to be part of the world, I’m afraid many people believe they must hush some key part of themselves.
I am so proud of the YA genre for addressing a long-standing silence. For years all these things that weren’t spoken of weren’t written about, either. I encourage anyone with stories, especially those who have lived with disabilities, to share them. In fiction, in blog posts, in videos or music or in any manner that suits you.
I don’t know what shape a thing takes on when you don’t speak of it. But I do know that once you speak of it, often it’s not as monstrous as you feared.
Next month Dad plans to get on a plane in Michigan and fly to the west coast to visit my sister and me for Thanksgiving. Traveling all this way was his idea, not ours, and we can’t wait to see him.