Navigating Life with Misophonia: “For the Past Ten Years I Have Lived Inside Music.”

For the past ten years or so, I have lived inside music.

At all times I carry a device filled with songs that have saved me. This device serves as a portal in that it opens other worlds. Or, rather, it does until the day it stops working.

*

The day my portal fails is of national significance. It is over thirty degrees. I am walking through a park that is a sea of yellow grass. Papery blades tickle my shins. The day smells of burning, from an estate barbeque nearby. The park is empty. I am looking for a lake, for light on green water.

I have water in my tote bag too, alongside books and my portal. It happens as the path steepens: coolness stings my feet and I realize water is dripping from my bag.

I understand before I look inside. Before I retrieve my portal and see, in contrast to its mirrored back, the screen is dull. I slide the switch off, then on. Dry it in my skirt. I press each button on the dial and tap the device with my palm.

I carry music everywhere because some sounds unravel me. The distress these sounds trigger is so severe that I used to wish for my hearing to fail—on birthday candles, dandelion clocks and eyelashes, and on coins I dropped in certain streams. Back then it seemed that anything imaginable could come true. The churches in which I grew up taught that beyond our senses exists a realm of everything—of scintillating futures. Words could bind things in that realm and call them into being.

I only wanted silence. To help this wish come true, I kept it to myself. This was easy, as I kept much quiet then. People called it shyness, and though it wasn’t, the label served. At church, shyness was a virtue—”Blessed are the meek.” Therefore I became shy, and I kept my wishes under my tongue.

The truth of why I felt—and still feel—most at ease alone, why I wished my ears would fail and why I live inside music, is that I fear the full-body turmoil certain sounds trigger in me. I grew up with misophonia before it had a name.

*

It is hard to describe a condition for which you have no name. When I was small, I tried. And failed. Loved ones found it funny. Some taunted me with trigger sounds, once they knew what bothered me. I stopped trying. It was tricky enough finding words to convey my distress—how noises gnaw under my skin, along my jaw and down my neck, and blaze through my marrow. How discomfort cloaks my shoulders and twinges my nerves until I want out.

*

I am aware that my reaction to some sounds is disproportionate. Sounds that hurt are not ugly. They are not nails grating chalkboards. Nor are they ear-piercing whines or cacophonies; they are innocuous sounds everyone makes.

Over the years, as it became clear that wishing for quiet would not save me, I learned to hide in more noise. I slept wearing headphones jacked into a netbook that played white noise. At eighteen, I bought a device that stored several days’ worth of music. It fit snugly in my palm. I made it my portal.

*

One of the most devastating aspects of misophonia is noticing new triggers.

As I grew up, more sounds turned bothersome. More places grew unsafe—apprehension followed me everywhere. So I looked for space inside—in music and stories. I found a thousand homes in art, in fiction that rang with truth, and with all it means and takes to live.

Misophonia isolates—more when you can’t articulate why you have to stay away or why you can’t eat with loved ones. Even as more sounds triggered me, though, in stories, possibilities still shone. In experiencing and creating art, I was never alone, but in a realm of everything alongside countless others: creators, and readers and listeners.

*

My mum taught me to read early. It was like learning to walk in that I don’t remember it. I watched her teach my brother, though, with words copied on scraps of paper. Short words—easy words that layered into stories. Stories over-spilled books. My siblings and I kept a village beneath our beds: dolls and action figures in cardboard-box-homes. Our stories opened other worlds. I wrote to remember.

*

When I tell friends this fateful day, my portal is dead, they laugh.

About time, they say.

They have a point—a myriad of music streaming platforms and apps now exist. Still, despite the many ways in which the internet has protected me over the years (through music, poetry and stories, advice forums and chats, the ability to work remotely, safe from unpredictable open plan offices, and more), I’m cautious about streaming music. Music poured day and night from radios around the house where I grew up, lyrics that echoed church teachings—the beauty of that realm of everything—and heavier ideas, too: that the flesh is corrupted and this world is not our home. Music that streamed from religious stations distorted my sense of self, such that I only saw my experience as physical—as a condition, not a curse—after I left home.

At university, I found the word online.

Misophonia.

I clicked page to page and saw more of my private strangeness and fear.

*

In a way, the internet has always been my ultimate portal. My friends may be right—it might be time to move on, to see the end of one portal as the opening of a greater one. While I’m cautious about losing myself in currents of data and music, in sticking with my portal, I’ve lost something else—I’ve made my world smaller. I’ve grown over-protective of music that brings respite, so much so that when, months earlier, I meet a photographer in this same park and he asks what I am listening to, I hesitate. I am safe, I have to remind myself, before I can share. I talk about Janelle Monáe—whose music carried me for years—and about the euphoria of her concert in Wembley two summers before. Conversation expands. I even admit, during the shoot, I feel unsettled in my body—sometimes so much so that I wish I could live in cyberspace.

On tough days I wonder about this—what it might mean to transcend, perhaps in a singularity, as in Isaac Asimov’s The Last Question. Perhaps it will take this to truly share and comprehend each other’s experiences. For now, though it is not easy, I am finding words, and I am finding joy in the challenge.

Back home, I sink my broken portal into a box of rice. I tell myself I’ll write about this day if, in the morning, my portal is not restored.

The last of the sun’s light falls across the wall by my sofa. Pigeons coo from my roof, and there is the distant clanking of a train. All the world is in motion. Innumerable stories and songs await. I am safe and free to share and to open new portals; to find and lose myself in words, in quiet and in noise, in the beauty and strangeness of being.

__________________________________

To Fill a Yellow House by Sussie Anie is available via Mariner Books.