Chronic Pain

The Fashionista With A Bullet In Her Ear

As a teen, Mildred Von's chronic hyperacusis got her labeled as an eccentric, a hypochondriac, and a drama queen. Now she's finding acceptance, with friends and the fashion world.

My small fashion business has good months and bad, and this month has been a good one. I decide to indulge myself by investing in some improvements to the offices where I merrily toil 12 waking hours a day.

For someone like me, a life-long sufferer of hyperacusis, even the simple task of rearranging office furniture is an absurd game of Tetris, where if I get the pieces wrong sound transforms to pain in my right ear. A conference table can’t go in the middle of the room, where someone could innocently sit to the right of me. A desk can’t go against this wall, because there’s a window on the right, and windows are lava. A machine can’t go against a certain wall, because it would create a thoroughfare down which some unsuspecting contractor could march, his every footstep as loud and piercing as a bullet through the cochlea.

The reason I have to take such care to arrange my office just so is because my brain processes all sound to my right ear as pain. It’s a condition I’ve endured since well before there was a diagnosis in medical literature; one which has been formative to the way I approach my art as as a garment-maker; and one which has in part driven me as an entrepreneur. But I love my work so much, it’s easy to forget I was conscripted into this life, like so many other disabled people, 1 in 10 of whom choose self-employment when traditional workplaces can’t accommodate them.

With hyperacusis, self-employment was my only option. This is what a typical conference table looks like to me.

Drama Queen or Hypochondriac?

I actually remember the precise moment I noticed the pain for the first time. I was nine, traveling as the sole passenger in a battered old hooptie a few streets from my home, when I realized the only way I could endure a rattling sound in the decrepit roof was if I craned my head so the sound was on my left side, not my right. After that, car journeys became very stressful. When my family went on drives, I would rush to the car to fight my sister over who got the right backseat, where no one would be sitting on my right side. My sister, in turn, wanted it because I wanted it. To my horror, my mother’s “diplomatic” solution to what she saw as an absurd rivalry was to make us take turns. It was then that I realized I needed to somehow be able to articulate what was going on with me, even when I didn’t understand it myself.

I can’t recall how seriously I was taken in the beginning, only that it wasn’t treated as a matter of urgency. In fact, I think my parents just thought I was going through some kind of phase. After my ‘phase’ didn’t abate, though, the medical tests began; for what seemed like hours, I remember being shut in a small room in the dark with an eerie clicking contraption affixed to my head.

Nothing came of the tests. From there, my working-class parents decided they just didn’t have the resources to keep on investigating the matter. They implied I was faking it, which wasn’t totally unfair: the previous year, I had faked an eye exam in order to procure a sweet pair of glasses. (I was prescribed an eye patch instead.) But there was nothing fake about the agony I felt every time something too loud happened near my right side. The stigma of not being believed has lasted a lifetime.

The stigma of not being believed has lasted a lifetime.

I was afraid to communicate with teachers about my unprovable condition, and stopped protesting when I was assigned desks that put me inside my own personal aural hades. After a lifetime of straight A’s, letters like C started appearing on report cards. Now, not only was I a liar and hypochondriac, but I was a stupid one. Who was grounded for performing poorly.

There were many reasons why I decided to quit school at sixteen and leave home, but my weird ear was definitely an important one.  I knew my prospects as a high school dropout were less than optimal, but for the first time in my life I was in total control of my environment, and I intended to keep it that way.

Coping Strategies

When you live with an invisible condition, life is a choose-your-own adventure of pain management.

Like the white-knuckle intensity of getting a tattoo, or scalding your mouth on pizza you’re impatient to put in your face, sometimes the pain is totally worth the reward. Yes, I can sit through a production meeting. Sure, I can deal with a 20 minute Lyft Line on the wrong side. But some risks aren’t worth the reward. For international flights, I take every advance precaution to secure a seat in the K (far right) isIe, because it’s otherwise unlikely I can endure the journey without blinding amounts of alcohol.

For the pain points you can’t avoid, you learn coping strategies. 

I stand a lot, whether in public transit or at a bar, which gives me the mobility to shield myself from unwanted sound. My friends find me infuriatingly prompt: early for every booking, every appointment, every dinner. It’s not a sign of good character: most of my friends have no idea that I’m racing them to our meeting point like a schoolkid to make sure I stake claim to an optimal seat.

When you live with an invisible condition, life is a choose-your-own adventure of pain management.

And, of course, you can’t have an essay on the daily trials of managing hyperacusis without a shout out to the almighty earplug, a tactical mainstay against sound. Ask anyone with hyperacusis about their earplug habits and they‘ll tell you more than you’d ever want to know: What brands, foam vs wax, custom moulded or not, I carry earplugs wrapped in wax paper in my pocket or bra  with the same urgency other women carry carry tampons. I even have an earplug budget. I am wearing earplugs right now.

How can I work for others when an open office would literally drive me mad with pain?

Desperate Measures

As a newly-emancipated minor, I had some hard choices to make. Amped to finally drive, I realized I likely couldn’t manage the lengthy, stressful practice sessions with a person sitting directly to the right of me… let alone the test itself. Employment also seemed out of the question: what employer would hire a preening little princess whose missing high school diploma was replaced with hyper-specific demands about where their desk needed to be placed?

Increasingly desperate and feeling cut-off from life, the obvious solution to my problems was getting progressively harder to ignore: Sound can’t cause me pain if I can’t hear it.

I’ll spare you the gory details, except to say, yes, this is heading where you think it is. For anyone thinking of following my lead of self-mutilation, though, I’ve got some bad news for you. Yes, I succeeded in making myself partially deaf, but it didn’t make the pain go away. It made my condition worse.

Smoking is bad for you. So is self-mutilation, as I discovered.

Deafness was the gateway to having my invisible condition accommodated without shame.

Like a true champ, I now had two disabilities for the price of one. But in the aftermath, something unexpected happened: in adjusting to my new reality, I noticed that telling people I was hearing impaired elicited a very different reaction than the disbelief I experienced in childhood. Everyone was very accommodating of not sitting on my ‘bad side’, not because it caused me pain, but because this new condition I inflicted on myself had actual credibility and recognition. I suddenly had the authority to ask people to sit on my left side so I could hear them. Deafness was the gateway to having my invisible condition accommodated without shame. Hyperacusis, in its medical obscurity ghetto, could stowaway on a recognizable condition that other people actually acknowledged.

Could this open doors for me? Would I be able to enroll in GED classes, maybe even university, now that I had a credible reason to demand accommodation?

Just when I couldn’t decide what direction to go in, a career fell in my lap.

The Eccentric, Self-Employed

It turned out there was a market in the fashion world with the asymmetrical designs my hyperacusis encouraged me to create. Photo: Nadya Lev

It might be somewhat of an understatement to label someone who accessorized their wardrobe with hardware at Home Depot as merely ‘eccentric’. For better or worse, I’ve always stood out and people noticed. Some of those people wanted a piece of my eccentricity, and without really trying, I became a fashion designer almost overnight.

It was a strange ascent, but a welcome one. My workspace was whatever I wanted it to be, a pain-free oasis in which I could forget I even had this thing called hyperacusis. My obstacles now were minor: I’m right handed, so I  learned to use my left hand for tasks that created unwanted noise, like using a mouse, cutting fabric, or marking patterns.

My preference for my left side manifests itself into everything I do. If my early work has any recognizable signature, it’s asymmetry. Layers, piled high on the left shoulder; peplums blooming like stalagmite from the left hip; pin-tucks and embroidery carefully sculpted on the left arm. The right side of my designs always barren, like a planet with a hemisphere always locked facing the sun. In an almost petty power trip, I dominate the right sides of my garments, retribution for the pain my right ear has caused me over the years. And because I bully them, garments turn my customers and clients into unwilling conscripts in the silent war between the opposing sides of my body.

Hyperacusis is so fully integrated into my designs and my work routine that I barely think about it anymore. I suppose, short of treatment, that’s the best result one could hope for. Like plucking a bug out of your soup because you’re determined not to let it spoil things, I try not to dwell on the impact hypercausis has had on my otherwise wonderful life. Now and again, though, I reflect on who I could have been had my condition not coerced my life choices.

Early work: Left: Photo by Allan Amato. Right: Photo by Beatrice Neumann.

Coming Out

Though, in my garments, I literally wear my hyperacusis on my sleeve, I’m still secretive about my condition.

The last time I discussed the topic with my mother, she inquired, almost as an afterthought: “Oh, whatever happened to your whole ear thing? Do you still have that?” I quickly lied “no”, uncertain if the reason I was doing so was because of shame, or because I wanted to believe it was true.

Last year, my secrecy was put to the test when my best friend lost her vision in her right eye. I wanted to console her by sharing my experience with sudden hearing loss, but I didn’t go so far as to let my hyperacusis out of the bag. Then something slightly horrifying happened: she began asserting herself on my right side so she could better see me with her left eye. Aware that my deafness meant I was more comfortable with being to the right of a person also, she suggested we take turns. And if I didn’t disclose my hyperacusis, she had a point: an eye for an ear, we were more or less ‘equally’ disabled.

Here I was again, trying to articulate my invisible ailment to someone I didn’t know would believe me, but luckily, it went better this time. She did everything right: she asked questions, thanked me for trusting her, and vowed to do her best to accommodate both my condition and my desire for secrecy

There seems to be limited value to disclosing my bonus affliction beyond, I suppose, a moral duty to raise awareness of a malady that currently wallows in medical obscurity.

This pleasant moment of sympathy has made me think about my instincts towards secrecy. What would be the worst that could happen if I told people about my hyperacusis? I’m sure most people I know would be understanding if I told them, but I’m still self-conscious that they wouldn’t treat my hyperacusis with the same seriousness they reserve for the more recognizable condition of deafness. And since they already treat my deafness seriously, there seems to be limited value to disclosing my bonus affliction beyond, I suppose, a moral duty to raise awareness of a malady that currently wallows in medical obscurity.

But maybe there’s a brighter side after all to coming clean about a hidden ailment. When I told my  friend about my plans to remodel my office, she enthusiastically offered to help me paint. Now that I’ve told her about my hyperacusis I don’t have to make up excuses for my office’s odd arrangements of furniture, or worry that she won’t offer up the right seat of the car on our trip Home Depot to pick up painting supplies.

While we’re there, I’ll also stock up on earplugs. And maybe something to wear.

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