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Professional photo of author seated with arms crossed against a green background.

The acoustics at the Writer’s Conference had been fantastic; the amplification perfect. The words spoken by the presenter had carried clearly through the space and to my ears. As the speech had met my cerebral cortex it had been transformed. My brain doesn’t settle for simply hearing. A process called synesthesia renders straightforward statements into showers of streaming letters and fountains of flashing images.

Forty-five minutes of listening, seeing — experiencing speech had made me tired. I found a corner and placed my back to the bright walls that abutted behind me. My deep breaths assured my sensory cells they’d have a little time to calm down before the next offensive. Sunglasses a blanket, earplugs a pillow, I rested while wide awake.

I looked at my watch. 2:00. Time for my photo. I found the studio and removed my sunglasses and earplugs.

There was light. Bright white light. And there was music. Bright orange-yellow music. My brain slowed by the double-edged onslaught, I diverted my eyes from the light and focused on the worst offender. My eyes danced over the room, trying to identify the source of the sound.

“Is that your music? Or is it from out there?” I asked, waving in the direction of the room from which I’d just come. There hadn’t been music in that room moments before, but maybe someone had just turned it on.

“I’m streaming it,” the woman replied.

The flashes, pulses, throbs of the notes had immediately begun to wear me down. “Um, could you please—not?” The sentence hadn’t come out as I’d hoped. I’d wanted to ask nicely, but the words were the best I could conjure.

The woman offered me her back as she fiddled with a small white box. The sunshine colored flow of sound was dammed. I reached into my mind to offer an explanation that would smooth over the abrupt delivery of my request.

“Thanks. I have auditory processing disorder, and music makes me confused. I didn’t want to get confused,” I wrapped up the sentences with a smile.

“Okay. You’ll stand on this line,” the woman said as she turned and stepped onto a blue surface. Light from two looming parallel lamps illuminated her body. One nemesis down, one to go, I thought as I realized I still had the light to contend with.

I took a breath and moved towards the line, which was a seam that stretched across the floor. The silver stripes on my black athletic shoes reflected the lumens that poured in my direction. I took care to hide the pain that I thought might show in my face.

“Stand with your hands below your hips,” she instructed.

I placed my palms beneath my hipbones and waited.

“No, no, no. Not like that, like if you had your hands on your hips, but your hands are below your hips.”

I put my hands on my hips, then pushed them lower. She was modeling the pose, and I tried to imitate it. Her fingers arched smoothly against her jeans. Mine splayed outward from my tunic.

“You’re standing — I don’t know. That leg — your weight isn’t balanced. Shift your weight,” she instructed.

“Huh?” I already felt pain in my wrists from their bizarre position below my hips. I leaned forward and pain from my hips and back were added to the equation.

She stepped behind her camera and I forced my lips to turn up at the corners. I forced my eyes to stay open against the light that shot waves of pain into my cranial cavity. I forced my hips to maintain the unnatural pose.

“That’s a better smile! What were you thinking of?” she asked.

Who who? The animoo! The animoo! The animoo! I smiled again as I thought of how my dogs looked each time I sang them the song. It’s one of my verbal stims, and my dogs seem to like it.

“Um, just a little rhyme,” I offered.

“Here, cross your arms over this chair and think of it again. That was a nice smile,” the woman coached.

I tried to follow her instructions. I knew she couldn’t see the scoliosis in my spine, the malformed bones in my wrists, or the effect of the bright light in my eyes — just as she hadn’t been able to see my brain’s reaction to the sound.

“Move your right hand down,” she instructed.

I complied, but a scream arose inside me. I wanted to shout, “You’re not gonna get graceful! You’re gonna get awkward. Awkward is how I am. This is my writer’s photo. I write about awkward. I write about different. I write about disability!”

But years of conditioning silenced me. Years of conditioning allowed me to breathe through the pain and give people the image they want to see, rather than an image that accurately represents me.

For decades people have ridiculed the way I stand. The way I walk. The way I speak. I’ve learned to put on a pretty face to keep the rage and judgment from raining down on top me when I want to be different. When I want to be me.

I’ve been told this is a good picture of me. I know the sentiment is offered with kindness, but the story behind it matters. This is a picture of me in pain, wearing a fake smile, praying for the session to end. This is who I can be for the benefit of others, but never want to be for the benefit of me.

This is a photo of me. Me comfortable. Me relaxed. Me pain free because I’m seated in a way the respects the needs of my body. Me protecting myself with sunglasses and earplugs. I ask — Would you accept me like this too?

Photo of author seated with sunglasses on against tri-colored background.

 

 

 

 

 

 

 

 

 

 

 

 

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<p>Twilah H is a recovering patient. She studied Philosophy with a concentration in ethics at the University of Kansas. Through writing, meditation, relationship building, and quilt creation she has found a place of peace.</p>

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