I’m a disability and mental health advocate and consult as a patient ambassador for SMA My Way. I’m also the author of a semiregular newsletter and “The Wolf Finally Frees Itself,” a column that details my life with spinal muscular atrophy. I’m an aspiring novelist, and recently finished the first draft of my space fantasy, #WaxingCrescent.
I graduated with my B.A. in psychology in 2017 from the University of Wisconsin-Milwaukee and will be graduating with my M.A. in Community Care from Indiana Wesleyan University this spring. I also work part time as a copy editor for BioNews Services. When I’m not writing, studying, or playing D&D, I’m dreaming up ways for stories to change the world.
Want to know more? Here's my story.
SMA News Today
#38 - Roundtable Discussion - Discussion for July 2019
Psychological Flexibility and the Rejection of Inappropriate Narratives
So, What’s It Gonna Be?
Crab Fat Magazine
Red: A Study
The Wolf Finally Frees Itself
Shakespeare and Punk
A Portrait in Blues
Poem for Rebecca Bunch
My Mother Scrubs Cerise; Virginia, 1995
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The stars died three days before Blaire was born.
It was an unremarkable, mild day, the sky blue and cloudless. Blaire’s history books referred to the phenomenon as stellar death: the sudden, inexplicable disappearance of every known star. When she applied for her school’s astronomy program—an archaic field, full of pseudoscientists, believers of myth and fairy tale—she described a star as a dangerous pinprick of light.
Blaire has always felt trapped on Earth, trapped beneath a black and empty sky. But with Tabietha, her best friend, things are better. Together they imagine a life in which the sky—dreary, sun distant and diluted—is full of stars. But when Tabietha is shot, forcing both of them on the run, the world becomes larger than Blaire could ever have dreamed.
The universe is sick, and Tabietha is the only one who knows how to keep it from dying. She has been sealing seams—tears in the fabric of the universe, leaking a poisonous substance known as sieh—for years, trying to determine the cause of the sickness, but now it seems that someone wants to stop her.
Driven from Earth by masked assassins, the two find refuge in the city of Saeter. Beneath a red sky punctured by tall, black spires, Blaire encounters not only the sieh but the people who worship it. Surrounded by saints, devotions etched into their skin, Blaire wrestles with her new place in the universe as Tabietha investigates the assassins.
Their reason for being on Saeter, Tabietha warns Blaire, has to remain a secret. In the wrong hands, it could kill them both. However, when Tabietha goes missing, Blaire is left with a choice: tell Jacen—the man who saved her life—the truth and save her best friend, or lie, and doom the universe to a horrific fate.
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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 get 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 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 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 and tension headaches. 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 24-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 and know that 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 toward my M.A. in Community Care, freelancing as a part-time copy editor; by night I write for that 11-year-old who saw something in space that she knew, even then, to yearn for.