[This article was originally published on The Mighty on August 27th, 2017]
I was privileged to be raised believing I could grow up to be anything I wanted to be; it took me nearly three decades to realize this message was something of a double-edged sword.
There were paths it became clear early on would not be my route through life; I never managed to memorize my multiplications tables, my idea of a “playing a sport” had always been along the lines of sitting and braiding bits of grass while other people did something with a ball. But I was book-smart (despite that multiplications tables thing), academically-minded and came from a socioeconomic background that established a good college followed by a “career” (not just a job) were the blueprints for a happy and fulfilling life.
So I worked and stressed and got into a good school, all the while dreaming of what my fulfilling lifelong career would be…but the underlying architecture that would make those blueprints untenable was already within me.
I have struggled with 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 tried to shuffle my work around each semester so only one class would bear the brunt of it – so I could consolidate the damage this condition was doing to my “record.” 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.
The first three years out of college, I had a migraine basically every day. I watched my cohort begin their careers (despite an abysmal job market – I graduated in 2007). They began to work their way up the ladders of their chosen professions and find the new balance of their social groups as they settled into the rhythms of adult life. I struggled to find – then maintain – a part-time job. The job I did have was a catch-22 of migraine triggers, and the energy it took to keep myself fed left little to no bandwidth for socializing. After you flake on someone three times in a row, most people won’t try a fourth time, so most of my social safety net deteriorated. All this time I was looking at myself and comparing what I saw to the people I had gone to school with, wondering what was wrong with me. Why was I such a failure at the real world? Why couldn’t I manage these next steps towards a fulfilling life that everyone around me seemed to be breezing through? I spent a lot of emotional energy beating myself up. I felt alone and isolated.
Deeply rooted in my idea of a successful adulthood for myself was a fulfilling career and financial independence. It has taken me a decade of starting and leaving jobs (by necessity) to realize I am disabled in a way that makes it basically impossible to hold traditional employment, and I swallowed that realization kicking and screaming. It still kicks me in the gut periodically. I would start each position during a better patch in my health, full of hope I could make it work this time…and inevitably, soon, I’d be calling in sick more and more often, until it was a medical leave and then a permanent leave, the smell of smoke from the bridges I’d burnt wafting after me.
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 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 blueprints of success I had started out with, but part of learning to reframe my idea of a successful life has been realizing I can still fulfill those initial passions in ways 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, starting early on in life. 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 I can help to ensure that children who struggle with 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) they are not alone.
The financial independence part…well, that’s still scary, and still unknown. But I’m giving it all I’ve got and hoping like hell. Writing and indie publishing allows me to work around my body’s unpredictable demands. This is my first book, so I don’t know yet if this will be the answer I’ve been searching for, but it is an exciting possible step towards independence and, hopefully, a way I can provide another voice for the underrepresented invisibly disabled community in children’s literature. I do know it may be a different shape than the future I thought I’d have, but it is absolutely a way I can take my dreams of growing up to create and educate and make them a reality.