I have suffered from migraines since I was a child, but it wasn’t until college that they reached a level of interference in my life that in retrospect I recognize as disability. I was put on a series of preventatives whose side effects made me sick, weak, cognitively impaired, and skeletally underweight. My body felt like a thing that was completely out of my control, which is a feeling that has never really gone away. I spent a decade starting and having to leave jobs before I faced that I was disabled in a way that made it basically impossible to hold traditional employment, and I swallowed that realization kicking and screaming. I watched as my college cohort found places for themselves socially and career-wise; I had daily migraines, and my social safety net all but deteriorated. I felt alone and isolated. I looked healthy; people couldn't understand why I couldn't function like a "normal" person. Like many people, my disability is invisible, but there isn't much cultural awareness about invisible disabilities.
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One day, on the bus to work (when I was managing a job), I was reading a book that had been recommended to me: “A Brain Wider Than the Sky: A Migraine Diary” by Andrew Levy. Here was someone writing about going through some of the same things I was experiencing. The relief of not feeling completely alone was so intense that I sat on the #86 bus with tears streaming down my face.
I have known for most of my life that I wanted to be an artist, and that I wanted to work in education. I wanted to create, and I wanted to have the chance to be a positive influence at a formative point in people’s lives. These goals took particular forms when fit into the kind of life I originally thought I'd lead, but part of learning to reframe my idea of a successful adulthood has been realizing that I can still fulfill those initial passions in ways that my body will allow for. After going through some pretty dark times, I gathered up my energy and channeled my experiences into trying to make conditions like mine a little less invisible. I have always had a deep love of picture books, and felt they had a tremendous impact on me in formative ways. Books are a formative element of childhood, and all children should be able to identify with characters in the books in their lives. So I wrote a semi-autobiographical picture book about a Narwhal with a chronic pain condition called “Noah the Narwhal: A Tale of Downs and Ups.” In writing “Noah” I hope that I can help to ensure that children who suffer from invisible disabilities have characters that reflect their experiences, and help to inform the people around them. I have spent the last two decades figuring out how to build my life around unpredictable debilitation: how to interact with the world and the people in my life in effective and positive ways. I’m hoping my experiences are something that have the potential to help others, even if just by letting them know (like me on that 86 bus) that they are not alone.
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Illustrations by the fantastic Sarah Gould!
