FOMO: The Fear of Missing Out

"How did you become deaf?"

Over the years, people have asked me the question most asked by hearing people towards Deaf people, My friends and acquaintances had a variety of responses: preemie baby, meningitis, Connexin-26, injury, etc.

For the longest time, my response was that I had been deaf since birth. Perhaps it was because I was born two weeks late? Because I was jaundiced as an infant? Perhaps the tornado in North Carolina that my family drove through caused it? Never in a million years would I think it was a genetic cause, a diagnosis that would include progressive vision loss in the long run - Usher Syndrome.


Usher Syndrome is diagnosis that combines hearing loss, vision loss (retinis pigmentosa), and vesitbular (balance) issues. There are three types - Type 1 causes profound hearing loss and vestibular imbalances followed by progressive vision loss later on. Type 2 causes moderate hearing loss and no balance issues. Vision loss comes later as well. Type 3 has progressive hearing loss and vision loss with little or no balance issues. For further information, check out the information page at Usher Syndrome Coalition (http://www.usher-syndrome.org/index.cfm/page/Learn-More-About-Usher/pid/10248)

I was diagnosed with Type 1 Usher Syndrome when I was 20 years old. For the longest time, I didn't like to talk about it. Not until an professor that taught a course on "Fear" in graduate school did I approach the subject as the context of an essay I wrote for the course. Through writing this particular essay, I came to understand that there were many underlying issues with disclosing my feelings regarding the diagnosis.

I have chosen to share it here so that people may better understand. Perhaps there are others in the world like me and they are alone. It took me a long time to understand that I wasn't alone, that there are others partaking in this particular journey.



"FOMO: Fear of Missing Out"

Click.

Click.

Click.

The orange lever on the side of my red Fisher-Price View-Master clicked in sync to the flickering images embedded within a cardboard reel inserted in the top of the contraption. My eyes were glued to the viewfinders where the images appeared at the end of the black tunnel with brilliant Technicolor-quality hues.

Click. Old Faithful at Yellowstone National Park.

Click. Beauty and the Beast dancing in the ballroom underneath the iconic chandelier.

Click. Big Ben at nighttime.

Click. Click. Click.

As a youngster on family road trips, I turned to the View-Master as a source of entertainment. The landscape outside the car slipped by while I sat in my T-bar car seat with the toy held up to my eyes to escape into alternate dimensions occupied by 3-D stereoscopic images. I never thought the toy would come to shape my future. Through the lens of the contraption, a barrage of images of far-flung places appeared to my eyes through tunnel vision. Little did I know that tunnel-vision would come to define the stretches of my vision in the years to come.

Xenophobia: Fear of the Unknown

The summer after my first year of college, I found myself at home in Idaho with the endless summer looming on the horizon. Yet that was not to be. My parents approached me one night when I was reading a book.

“Your father and I need to talk to you.”

Thoughts swam around in my mind. What did I do? Did I do anything to displease them? Did I forget to do something important? Did someone die? Is someone dying? Nothing seemed to fit the bill.
With a sense of trepidation, I put my book down. My parents sat on the couch opposite.

With a heavy sigh, my father spoke up, “We have something to tell you.”

Uh oh… this is not good. I didn't like the tone of his voice.

In the matter of minutes, they disclosed their concerns that the cause of my deafness may not have been purely accidental (oxygen tank; illness; the tornado) but rather, genetic. None of it registered in my brain aside from two words - Usher Syndrome.

But – as much as I wanted to deny it, it made sense. The balance issues, linked to a vestibular disturbance. Stumbling around in the dark. Not seeing people waving off to the side. Sensitivity to sudden changes in light. And all that jazz.

Unable to hold back the flood works, my mother let the tears run as she held her arms out for a hug.
Brushing off the offer, I muttered something about not wanting comfort. My defenses were back up.
“If I could, I would trade my eyes with you and take on the burden.” My mother stared at me. “I would.”

No you don’t.

My father muttered something about scheduling appointments and a possibility of driving out to Portland “to confirm the diagnosis.”

Diagnosis. I didn't like the sound of the word. Diagnosis went along with the types of cancer and AIDS and all those things people try to avoid at all costs – and now I was to be diagnosed with something?

But wait – what if they were mistaken? Perhaps they were jumping to conclusions? Without further confirmation, I refused to accept it. With that, I stood up and wrapped my hand around the doorknob.
My mother placed a hand on my shoulder.

Shrugging it off, I refused her offer of talking about it. “No.” With that, I slipped through the door. “Leave me alone.”

Achluophobia: Fear of the Darkness

For as long as I could remember, I've always been terrified of the dark. As a baby, my parents placed me in my crib every night and left the room, only to be met with nonstop wailing and screams of terror. After days and days of listening to the nightly discordance, they figured out that I disliked the darkness for what it didn't offer – communication and the comfort of knowing I was not alone in this scary world of ours.

At that time, they didn't know that I couldn't hear – and that intensified my fear of not knowing if anyone was around as I couldn't see them from my crib. Once the battalion of night lights were installed, the screams died away.

Even so, I developed a life-long association of piecing darkness with not only the absence of light, but the absence of human contact and interaction. Once the lights are extinguished, the world stops spinning. Yet the fear persists, in its literal state as well as its figurative state.

Counterphobia: Fear of Fearful Situations

The next day, my mother and I drove over to the local eye clinic to get my paperwork shipped to Portland and do some pre-tests. Letting the car idle in the parking lot, my mother turned her attention to me. Concerned, she told me “You are scaring me.”

I blinked. “What?”

“Last night – I expected you to freak out – to panic – to cry – to scream at your father and I.” Sniffling, she paused for a moment. “But the silence – it terrified me.” With that, she burst into tears.
Resentful, I reached over and grabbed a handful of Starbucks napkins from the glove compartment and handed them to my mother.

“You’re handling this better than I am.”

Only if you knew…

“I’m the one crying – and you’re the one sitting there as if there was nothing wrong.” She blew her nose. “How do you do it?”

One word – masquerade. The tune of the same name from The Phantom of the Opera filled my head. On instinct, my mouth moved in sync to the lyrics streaming through my head. I closed my eyes. “Masquerade… paper faces on parade… masquerade…” The image of the stuffed monkey sitting atop a music box from the musical echoed in my head as the melody played on. “Masquerade…”

Inside the clinic, the doctors subjected me to a series of tests. I scored 20/25 for central acuity. Glasses stopped helping me in high school as the floaters (little black gnat-like spots that float around in my vision) constantly changed daily. Reading the eye chart, some letters were easier than others. Those pesky floaters made a P look like a R and an O melted into an D. But put them in words, my mind filled in the fuzzy letters with the ones that belonged there. My color vision was sharp as ever – I was able to distinguish the purple X’s and O’s in a sea of brown dots.

Onto the field vision test. The doctor gave me a gaming nunchuck-shaped clicker. I rested my chin on a framework facing a flattened cone that made up the field for the video-game quality test. “Stare straight ahead and click when you see light dots moving around.”

I nodded and leaned my forehead against the pad on top of the head-cage. Holding the clicker in my hand, I rested my arms on the tabletop as if I were flying a biplane through enemy territory. The clicker became my throttle as I let my eyes scan the field for targets – those moving light dots became my targets. Each time one drifted into my field of vision, I clicked the throttle. Hey, this was fun!

But after fifteen minutes, my eyes were exhausted. Finally, a hand closed over my hands as they turned off the machine. While the doctor went off to print off the results, another doctor shuttled me into an examination room. Sitting in the examination chair, I let my mind wander as my mother listened and half-fed signs to me as she tried to piece everything together. “R-P.”

I blinked. What? RP?

“Retinis Pigmentosa.” The doctor nodded gravely. Yet he did not have knowledge of Usher Syndrome and could offer no additional information when my mother brought it up. “I've heard of it by and by but honestly, she’s the first one we have.” He consulted his team of doctors and after a few minutes, informed us that our best option was with the professionals in Portland, Oregon.

Athazagoraphobia: Fear of being Forgotten or Ignored

A few days later, my parents and I took a road trip to Portland. Upon arrival, we met with a nurse.
“There is no interpreter.”

What? Broken out of my reverie, I looked at Mom.

She repeated her sentence, stating that the hospital failed to follow through with getting an interpreter even though she had called in advance and got a confirmation just a few days earlier.

“No interpreter?” My confidence plummeted as I sized the graveness of the situation. No interpreter? But that meant…

Mom sighed and turned to Dad. “Honey, I need you to listen.”

Dad looked up from his Blackberry. “What?”

“There is no interpreter today so I have to interpret so I need you to listen and ask the questions.”
Still - no interpreter? I gulped as I followed them down the hall to the room. The doctors at Casey Eye Institute put me through the same series of tests I had at the home clinic, except for the addition of one more test - the one I loathed above all – the ERG.

The electroretinogram test. Simply put, the test tracks responses from the nerves within the eyes. Yet that meant placing foreign objects near/in my eyes – which I could not tolerate. Even if one were to hold their finger near my eye, I would recoil upon instinct.

Aichmophobia: Fear of Needles or Pointed Objects

With that particular test, I didn't like the sound of it. Contact lenses attached to wires would be inserted into my eyes after sitting in the dark for 45 minutes during the test. I didn't do well with eye drops - let alone put anything in my eyes. Even a finger moving towards my eyes made me recoil. But the nurse was determined to get them in, no matter what.

She beckoned me onto the dentist-style chair and backed me down to a reclining position. With the bottle in her hands, she gripped my head in one hand while the other hovered over my eye. I tried - really, I did. Struggling to keep my eye from closing, I gripped the armrests.

“Relax.” Mom’s face appeared in my field of vision. “Relax - don’t think about it.”

Easy for you to say - you’re not the one with Nurse Ratched hovering over you with the bottle - it could be a bottle of Superglue ready to seal my eyes - or it could be a harmless bottle of liquid designed to dilate the eyes. Nevertheless, I didn't trust her.

Drip.

I blinked.

Seething in frustration, the nurse handed me a Kleenex and tried again.

Drip.

I blinked.

“Relax.”

Drip.

Another blink - but some of it got through. I could feel my eyeball absorbing the wetness.
“One more.” The nurse repositioned her grip, pushing my head back flat on the headrest. Drip.

Half-blink leading to a series of rapid blinking in succession.

“Now, the other one.”

I groaned. I’d had enough of this torture.

“Sit back - we could have been done twenty minutes ago.” The nurse switched sides and angled the bottle over my right eye.

Drip.

I blinked.

I read the nurse’s expression - she looked as if she were ready to call it day and proclaim it a failure -but a spark rested in the back of her eye - she wasn't about to let a patient get the better of her.

Drip.

I blinked.

Mom’s hand gripped my knee. “Relax.”

The nurse leaned over even closer with her face in my face to stare me down in a staring contest.

Drip.

A squint. I recoiled to a sitting position as the nurse screwed the cap on the bottle and told me to sit tight for a few minutes and left.

Returning, she squinted into my eyes and muttered something. I turned to Mom, waiting for the interpretation.

“She said that they aren't dilated enough.”

Argh. That meant more drops.

“Relax - it will be over in a few drops.” Mom rested her hand on my knee, ready to give me a squeeze when I blinked.

Monophobia: Fear of being Alone

After a few attempts, the nurse decided that she was satisfied with the result. Beckoning me to follow her, I stumbled to my feet as the room alternated into focus and out of focus. Holding out a hand to steady myself (and to prevent being brained by any object too close), I judged the distance between the door and myself. Before I could launch on my quest, hands took me by the shoulders and steered me down the hall and into another room.

Here, a comfortable couch from the 1980s with a floral print met me. I sat down on the couch and Dad settled net to me. Mom took the armchair to my right.
“Remember they will turn the lights off for 45 minutes so your eyes can get used to the dark.”

I nodded and reclined back on the couch, waiting for the inevitable to happen. I thought it would be a few minutes but without warning, the room was engulfed into darkness. Now, when we talk about how dark it was - think of the darkest room with no windows, no doors, and all electronic appliances turned off so there’s no comforting blue light from the printer or the green or red LED display from the VCR/DVDs that we find in our homes. Here, the lack of electronic blip lights haunted me as I turned my head around, searching for a pinpoint of light. Light meant safety.

A few minutes passed.

My mind started playing tricks on me. With my cochlear implant, every sound was amplified by my cochlear implant - every movement made me imagine all the horror monsters coming out. The couch shifted - was that the Bogeyman coming out from underneath? Reaching up to my ear where the sound processor rested, I debated between two choices – would it be better to hear everything but not know what was causing it, or to turn it off yet know they are out there somewhere and I wouldn't hear them approaching? Panicking, I drew my knees up to lift my feet off the floor - let the Bogeyman get Dad.

Oh right - Dad was the one moving around.

But what if it wasn't Dad? What if Dad and Mom slipped out leaving me all alone?

My hands thrust out and my left hand hit Dad. A grunt met my cochlear implant. Good, he’s still there - but what about Mom? Instinctively, my hand shaped the sign for Mom - until I remembered that signs were impossible in the darkness. Somehow I found my voice and whispered “Mom?”
Something akin of “I’m here, honey” met my ears. A hand reached out of nowhere and made contact with me. A mess of cables tangled over my fingers as something was dropped into my lap. Feeling the contour of the object, I took it to be my iPod with the CI personal audio cable.

Grateful, I snapped the cable into position and turned on my iPod. A hand closed over the screen - right, no light allowed. Pressing buttons blindly, I managed to find my play list and let the music stream into my head while the iPod laid facedown in my pocket.

The first song came on - melancholy chords from “Will I” from the musical Rent filled a three-part harmony as the voice expressed his despair. “…will I lose my dignity… will someone care…. Will I wake tomorrow from this nightmare?”

Oh great.

The voices intensified as thought swam around my mind. A few songs later, the door cracked open and someone came in. Making a beeline for me, the shadow pulled me to my feet and I recoiled - what if it was the bogeyman?

Grunting in agitation, the stranger grabbed me by the arm, led me through the darkness, and settled me on a chair in front of a machine. Unintelligible voices swam overhead. Not being exposed to language made me frustrated, as I let my head play a ping-pong match between the two of them as I tried to piece out the words I picked up to complete the jigsaw puzzle.

Suddenly, a hand materialized amid the faint light emitting from the machine in front of me. In the hand was a contact capsule with a wire leading from it.

Oh no.

My eyes squeezed taut as the nurse waved the object in front of me, beckoning me to open my eyes. With my eyes watering, I focused on the contact to the point of getting cross-eyed. Every time the nurse brought it within a few millimeters of my eye, the pressure in the air maximized as I flinched away as the hand came down.

A hand grabbed the back of my shirt, lifting me out of the chair. Somehow, I located the red light emitting from the flashlight in her hand. Following the beam, I saw Mom trying to sign something in the barely-there light. “Eye… open… contact… in… no blink… wash out…”

I nodded and leaned over to give it another shot. No go. Again. Every time the nurse came close to putting it in my eye, the images of the demon from Buffy the Vampire Slayer with the screws coming out its eyes to screw into a child’s eyes caused me to wince in fright and back off.

Finally, the lights snapped on and the nurse threw her hands up in disgust. She thrust a pair of sunglasses on my head to block out the harsh beams shooting from the fluorescent beams overhead. Behind us were several nurses, all sharing the same look of dejection of dealing with a difficult patient - Mom confided in me that they were on the verge of knocking me out with drugs and getting those contacts in while still unconscious. But there was no real reason to - they already had the answer to our questions - this test was only to confirm it. With a disgruntled beckon of the hand, the nurse bade us out of the room.

Scotomaphobia: Fear of Blindness

Finding myself back in the dentist-chair, let my eyes rest as my parents and the doctor exchanged words. Mom struggled to keep up with listening in order to interpret the words the doctor was telling her. Squinting, I could see her eyes welling up in tears as the truth sunk in. No words were needed to see the despair on my mother’s face - the devastation writing itself across her face was more than enough to tell me the truth.

No.

No.

NOOOOOOOOOOO! My mind threw itself into frenzy as the words came together to complete the puzzle. I’m Deaf. Not Deafblind. I need my eyes. My eyes are my ears. Deaf.

“Retinis Pigmentosa…"

“No idea how much longer…"

“Good eye results for now…"

The doctor threw out some facts from my file - how he was pleased with my central acuity… how my color vision was sharp as ever… Field vision, that fluctuated from day to day - some days I saw more than others - as shown by the inconsistencies between the two results, one from the local clinic and one from this fancy research hospital.

The diagnosis was clear enough - Usher Syndrome.

While the doctor spewed out information to my parents, my mother’s hand slipped, dropping a sign or two here and there to the point where she was signing a garbled message - but I tuned her out. I didn't want to hear it (or see it).

Inside my mind, my thoughts swam in overdrive as I struggled to force the thought of impending deafblindness out of the way.

Yet in those few weeks I faced a barrage of fears – some preset already (i.e. being terrified of the dark), some that were solidified by those visits (i.e. the fear of losing my sight – and intensifying my fear for the darkness). Taking the fears one at time seems manageable, but having to draw one’s shield and face several at the same time creates the perfect catalyst for a nightmare that one cannot escape.

Ultimately – it all winds down to FOMO – or the fear of missing out.