Monstering

Disabled Women and Nonbinary People Celebrating Monsterhood

A Quiet Roar

As a teenager, I made it a point to stay as far away as I could from disability-related memoirs. This was probably a mistake on my part—the older I get, the more I enjoy nonfiction—, but at the time, it was simply a facet of survival. I didn't want to talk about disability, read about it, even acknowledge it.

I'm older now. And, depending on who you ask, I'm wiser, too. I can no longer deny the movements of disability as they manifest in my life. I call myself "disabled." When people ask—and they always do—, I tell them I'm happy, I'm fulfilled, Im learning to forgive my body, myself for hating my body. There are bad days. Of course there are. But there are good days too, and when they're good, they're good. So disability has become a part of me. I no longer deny it space here.

Still, when someone reached out to me about reviewing A Quiet Roar, I hesitated. My phobia returned—that odd, nebulous fear. I spend so much of my free time on Monstering, putzing around on Squarespace, sending out acceptances, rejections, solicitations. There's a red heart pinned to my denim jacket, one that says "disabled." I wore it to a poetry slam a few months ago and felt nothing, not even shame, so naturally I felt like I'd passed a kind of test. I am familiar, now, with pride. I love myself, my disabled self, the complications that arise when identity consumes everything else. But apparently there was still something about—yes—memoirs.

I'd much rather review a poetry book, I remember thinking. Someone else can review it.

But I still replied with yes, of course, I'd love to write a review. I've never shied away from a challenge, and besides, would I really be worthy of Monstering if I said no?


It's not that I dislike myself, my disabled self, the only self I've ever been. It's just that—when I think about disability, I think about death, and death is something I haven't yet been able to grasp. So the solution, then, is clearly to never think about disability. Ever. Problem solved, anxiety attack averted, etc.

Here I am, though. Reading about disability, and thus death. I'm reminded of glancing in a mirror—looking past yourself; searching for the thing at your back, dark and viscous. When death is all you see—the thing that waits for all of us, yet somehow feels stronger to me, more present, harder to dismiss or ignore—, you learn to look away.

In my case, you learn to close your eyes.

I've been disabled for as long as I can remember. So while I struggle to identify with the acute onset of Multiple Sclerosis (MS), how Redl came to terms with it, I know her sense of loss, know it like my own body. I've never been able to walk. But I was able to sit up, once upon a time—and it really does feel like a fairytale, like the prologue to my favorite story: a long time ago, in a galaxy far, far away—, was able to feed myself, write using a pencil. Those things are lost to me now. And while I've adapted, their absence echoes, a place in me that will never see green again.

"I had been diagnosed with MS," Redl writes, "but I was determined not to give up doing the things I loved doing, especially writing and riding. Weak legs or not, I wanted to ride with the herd on turn-out day in June that second year of officially having MS." But after riding an "old palomino mare from the ranch herd," she admits, "I never rode again."

I read this and feel the spaces in me—the empty ones, charred with grief—, writhe contentedly. For the first time in quite a while, I allow them to be seen.


The first passage I highlight:

I swear, in that moment, when I was in tears and in front of my computer screen on a grey, miserable and rainy day in June, the clouds parted and a shaft of sunshine broke through my window and bathed my computer and me in warm, golden light. A feeling washed over me, like a feeling of being hugged, and something said, 'It's going to be alright. You're going to be alright.'
I admit freely that in the intervening years when I've struggled with this disease, particularly when I've taken a fall and can't get up, I've looked to the sky and said, 'You promised. What's with this, then?' There's never been an answer to my accusation but deep down I know that I'm heard.

I've never considered myself a country girl—I am drawn to the city, that massive flurry of sight and sound—, but Redl writes with fondness overflowing. We return to a simple image, that of a "tall white horse," and through Redl's love of riding we come to understand just how devastating her diagnosis was, continues to be. "The delight in that sensation of flight stayed with me," she says, "always accompanied by the smell of warm horsehair and the feel of coarse, wiry mane clenched in my fingers. Later, much later when Lucky was gone and I was riding in the woods behind a different ranch on a different horse, I would always search vainly for a log to jump over."

A Quiet Roar reads like poetry, in that Redl's voice speaks to lyricality, to the self-knowledge that informs it. She doesn't shy away from the difficult things—from pride, stubbornness, which are incidentally things I share with her. Instead, Redl takes us through the life she's lived—the life she still lives—, and so we are privy to an interior life that seems almost boundless. We come to know her. We come to love her. And so we are drawn into this narrative, so achingly personal.

I find myself wondering what would happen to Redl if I were to stop reading. If I were to close the PDF, switch to something less personal, striking—maybe a poetry book, because God knows I have enough of those laying around—, would I stop time? Would I prevent Redl's diagnosis? It occurs to me that this is what tragedy does, what tragedy makes of us. We become hopeful creatures—in spite, despite.

Redl doesn't dwell on MS. But she does weave its presence, pre- and post-diagnosis, into the narrative. I'm reminded of the rods in my back, how they're twined so completely with my spine, indistinguishable from what remains of my natural body. I'm reminded of my reflection, how that thing hovers, how even in moments of life there is still a kind of death.


"I was already having dreams of me unable to walk,” Redl writes. "A recurring vision of myself, stumbling onto my knees and unable to get up again, haunted my nights and occasionally even broke through my daydreams."

How disability haunts. How sometimes it feels like it was always there, even when it wasn't, even when the shadow parted and the sun shone through.


There are moments of lightness. Humor. And I recognize myself in them, recognize the way I negotiate and inhabit the spaces my disability contains. Rationing energy. Releasing expectations—forgiving myself for losing strength, for losing my grip on the things I'd so desperately wanted to retain. When Redl admits to fear of the future, of becoming a burden, I think, Yes. When she trips and falls—when, to her dismay, her symptoms worsen—, her grief pierces me, and I think, I see you.

Redl's anger is my anger, her victory mine. She speaks of a "spontaneous and heartfelt determination" that "[her] disease [was] NOT going to get the better of [her]," and my heart grows 10 sizes. When she says, "I am not a passive person. I'm not content to watch life go by. I have to live it," I'm reminded of all the times I've journaled something similar—and there are many. These realizations are passing things. They come and go. But I've come to take comfort in that, that I will always find the strength in myself to begin again, to dig my heels in the soil of this ouroboros and start anew.

I feel there is kinship here, in the pages of A Quiet Roar. Redl reaches out. Redl writes her own reflection, which is also my reflection, which is also yours. I never used to believe in community, solidarity, group therapy, but now I understand. Now I see a desire, which is also Redl's desire, in myself, to somehow and in some way be seen.


"My life," Redl writes, "is, in many ways, no less uncertain, but it is still beautiful, and it is still mine."


How we rise. How Redl reminds us of that, of buoyancy, her life and words a testament.

 

Heidi Redl lives and writes with multiple sclerosis in Williams Lake, BC. Her columns and stories have appeared in Canadian Cowboy Country magazine, in the MS Kamloops Chapter newsletter, in Canadian Geographic and in MacLean's magazines. She continues to write, to teach writing, and to struggle against the effects of MS in her life with the help of her husband, Tom, and her family and friends.

 

About the Author

BRIANNA ALBERS is a storyteller, located in the Minneapolis suburbs. In 2016, she founded Monstering, a magazine for disabled women and nonbinary people; she currently serves as the Editor-in-Chief. Her début chapbook, Why I'm Not Where You Are, was a finalist in Where Are You Press' 2015 "Where Are You Poet" contest, and was published in 2016 by Words Dance Publishing. Her work can be found or is forthcoming in DIALOGIST, Guernica, and Word Riot, among others. Find her online at briannahopealbers.com, and on social media at @bhalbers.