My Story

I was diagnosed with Spinal Muscular Atrophy at nine months of age, a genetic disease characterized by the atrophying of muscles. At the time, SMA was considered fatal. Experts in the field gave me nine years to live, assuming that, like most SMA patients, I would die of respiratory failure at a young age.

My childhood consisted largely of survival. I was ferried from specialist to specialist, spending months at a time in the hospital. I attended school during the fall and spring and was homeschooled during the winter so I wouldn’t fall sick, and it was during those endless Minnesota winters that I fell in love with storytelling. My parents read to me as a child, but it wasn’t until I discovered science fiction that something came alive in me. I was captivated by the idea of other worlds, of a horizon beyond the stars. Over the next decade, I struggled with mental illness, grappling with the knowledge that every breath I took was in essence stolen, days and months and years tainted by the inevitability of my own death. But stories sustained me. When the fragility of my body became too much, I fled to another time and place, a world in which my disability could be something extraordinary.

I started college as an English major but fell into a years-long depressive episode as a sophomore. I dropped out of my honors program and enrolled at the University of Wisconsin-Milwaukee. During that time, I was introduced to the mental health field, which prompted me to switch majors. I thought that, as an empath, I could put my experience with mental illness as it intersected with my disability to good use as a mental health counselor, so I graduated with a B.A. in psychology and plans to get an M.A. in mental health counseling—all while juggling depression and anxiety.

During that time, I took solace in the massively multiplayer online game Star Wars: The Old Republic. Through SWTOR, I found a community that shared my love of storytelling. I’d been writing for years at that point and spent the next little while experimenting with poetry and personal essays; I published a book of poetry in 2016 and even founded a magazine for disabled women and nonbinary people. But with time I came to understand that, as much as I loved poetry, I loved fiction still more. There was something about fantasy and sci-fi that spoke to me, and I loved the collaborative aspect of roleplay, how my friends and I could create entire stories just by writing together as part of a video game.

In early 2017, I started experiencing unidentified, and ultimately unexplained, chest pain. Soon that chest pain became vertigo, tension headaches, chronic pain. I believed I was dying and spent the next year and a half in a state as close to death as life can get. Some days I could barely get out of bed. But I did, for stories, what stories represented. I started writing again—not poetry or fanfiction, but the book I’d been working on for over a decade. I started playing Dungeons & Dragons and found in me a passion, a deep-dwelling love, for collaboration, experimental media, new and exciting forms of storytelling. As 2018 bled into 2019, I realized that, as much as I believe in mental health, and as much as I want to help people at the intersection of mental illness and disability, my heart belongs to stories. They bring me to life; they spark joy in me. They saved me as a child, and they save me now, a 23-year-old with flowers for tattoos. When I think of my life, all these years I’ve stolen, and what I want those years to mean, I think of stories.

I often joke that I’m a romantic. “Everything I do,” I like to say, “is for love.” But it’s more than that. I’m a romantic because I believe in the power of stories—seeing yourself in a story, a disabled girl with crooked teeth and stars in her eyes. I would not be alive today if it weren’t for stories. I know that, like I know my own heartbeat, like I know the Star Wars theme song. So I’m following my heart. By day I work towards my M.A. in community care; by night I write for that eleven-year-old who saw something in space that she knew, even then, to yearn for.