Full title: INTERDEPENDENCE AS DISABLED POETICS AND PRAXIS: OR WHY MY NOVEL IS DEDICATED TO MY DISABLED FRIEND MADDY | OPEN BOOK (OPEN-BOOK.CA)
People often say that they couldn’t have written their books without the help and support of friends and family. This is particularly true for disabled writers. Finishing my novel required many hours of hard work from my friend Madeline. But she wasn’t weighing in on the likability of my characters or the proper way to format a manuscript. I needed her help because I was physically unable to finish my novel on my own.
Madeline and I met about a year ago at a networking event we both went to for work. I was trying to recommend a book to her, but I couldn’t remember the name of it.
“I’m so sorry – I’m terrible with titles,” I said. “I’m recovering from a brain injury.”
Madeline’s eyes lit up with recognition. “What kind of injury?” she asked and quickly added, “I am too.”
Maddy and I have very different injuries – she’s recovering from a brain hemorrhage that she had six years ago at the age of 23 and I’m recovering from a severe concussion that I got two years ago. Many of our symptoms are different – she has weakness on her left side, for example, and I struggle with using screens. But our brains also struggle in some of the same ways -- when we talk we will both sometimes close our eyes because we struggle to find words for what we want to say and doing so makes it easier to find them. We both also know what it was like to have invisible illnesses and have people assume we’re okay when we are actually experiencing extremely distressing symptoms.
“Let’s meet up,” I said and handed her my card as the networking event came to a close.
And so, we met up.
In my life, there have been a handful of people I’ve met and known immediately that we would become close friends. That’s what it was like with Maddy. The first time we hung out, we went strawberry picking together and talked about what it was like to learn how to walk again and drive again and do all the things that so many people take for granted but which our injuries temporarily or permanently took from us.
We talked about the trauma of being in a body that suddenly losses function and the pain of experiencing ableism from employers, friends, and family. Mostly, we talked about how lonely we were within our disabilities and recoveries – not just because fatigue and overstimulation sometimes isolated us, but also because no one we knew understood. We laughed and we cried. We ate a lot of strawberries. It was a beautiful day.
At some point, I told Maddy how frustrated I was that I couldn’t finish my novel.
“I can’t make my edits on the computer because when I look at screens my cognitive capacity decreases and the complex structural edits I need to do take all my brain power. But if I print my manuscript out and make the edits on a piece of paper, I can’t transfer the edits back into the document because my eyes struggle with switching from the paper to the screen,” I said. “I feel so stuck. I worry sometimes that I’m never going to finish it.”
Madeline listened and nodded. "I'm so sorry," she said. "Our injuries have taken so much from us. I wish it wasn’t taking this from you, too."
A.H. Reaume is a Vancouver-based fiction writer who reads too much and is currently in too many book clubs (four in total). Reaume has a background in feminist activism and an M.A. in Canadian Literature from UBC. She's been published in the Vancouver Sun, The Globe and Mail, USAToday.com, and Time.com and is currently trying to finish her first novel.