Personal Stories

Hearing Loss Is My Superpower

By Frank Barnes III

Teen angst may be a rite of passage for everyone, but for me it was amplified, if you’ll pardon the pun. Despite receiving a cochlear implant at age 22 months, and being mainstreamed into my local public school district from kindergarten, by late middle school into high school I had became bitter and resentful about my dependence on hearing technology. I saw it as a burden.

Angry and frustrated, I felt self-conscious about the external sound processor on my head, believing it was all that people knew and judged about me. By wearing a hearing assistive device, I thought that I was broadcasting, “I need assistance.” I felt incompetent and incapable, and to show that I didn’t need it, I didn’t wear it to my eighth grade graduation party and kept removing it during freshman year of high school. I felt like not leaning into the hearing loss was a better choice for me.

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This meant I also had no interest in actively seeking out the hearing loss community, and instead passively rejected it, not out of any sense of malice but just because it didn’t feel like somewhere I needed to be. I consistently resisted any nudges from my parents to connect with people with hearing loss who also wore cochlear implants.

It may not surprise you to hear that this only sunk me lower, affecting not only my self-esteem but also what had been my high honors/academic excellence, athletic performance, and social relationships.

Age 22 Months

I have a profound hearing loss in both ears, which resulted from bacterial meningitis. My parents first noticed my hearing loss when I was 18 months old. At age 22 months I received a cochlear implant in my right ear. That it was a mere four-month window between the first signs and diagnosis of my hearing loss until implantation is a remarkable tribute to the commitment and efforts of my parents and the professionals all focused on finding the best solution for me and my family. My surgeon was the late John Niparko, M.D., of Johns Hopkins University, a true leader in the field. At the time in 1997 unilateral implantation was the protocol; I don’t use anything in my left ear.

As a toddler, I attended Summit Speech School in New Providence, New Jersey, to develop my speech, auditory, and social skills, and was able to be mainstreamed into the local public schools starting in kindergarten. I was sent to school with a boxy FM receiver that I had to use throughout the day in order to function with my typical-hearing classmates and teachers.

It’s a big responsibility for a kid, from age 6 and up, already struggling to pay attention to the teacher and socialize with other kids, to also have to change an FM box’s batteries and make sure it doesn’t break or get wet. Over time, I resented having to use it and just stopped in ninth grade—not because I was bullied but because I felt like I didn’t need it.

It was during this period of self-isolation from the hearing loss and cochlear implant community when an invitation for a reunion at Summit arrived. Of course I did not want to attend. But at the prodding of my parents, I did go. And that’s where and when I had my epiphany.

Back at Summit, I found myself surrounded by other alumni—all of us now teens and young adults—who shared their stories of living full lives. Listening to them speak, I saw they were each succeeding in school and prospering in the world—while wearing the same hearing devices that I wore. It was an eye-opening experience, one that planted the seed of-self acceptance that would slowly blossom to change everything for me.

Hearing their experiences, I realized, all of a sudden, that my hearing condition in fact gave me a foundation to achieve any goal and to become successful despite the loss of one of my senses. Everyone in that room reminded me of where I have been, and how we all have similar conditions and struggles. I saw the staff, who to this day are still there teaching and educating and loving and supporting—and the positive effects this has had on all of the alumni. I realized I had distanced myself from the very people, teachers and students alike, who made me who I am today.  

Age 22 Years

During college at Stony Brook University in New York, I did an academic year “abroad”—I was not overseas physically but “traveled” emotionally. I attended California State University, Northridge, and developed friendships with D/deaf students, which helped me gain confidence about wearing my external sound processor in new environments. I met people whose experiences nearly mirrored mine, which made me feel empowered and a part of the community.

I also took classes in D/deaf studies: American Sign Language and the hearing sciences (audiology coursework). When I learned about the anatomical framework of the ear/body relationship, I had a newfound appreciation for the astonishing technological capability of cochlear implants and profound work of audiologists and hearing specialists.

I graduated last spring with a degree in the health sciences, and landed a dream job in the field of immersive technologies, or virtual reality. My company crafts shared VR environments that are visualization and simulation experiences. I wear many hats at the company, working in production, delivery, marketing, and business development, and on project management teams.

The immersive experience is a balance of the visual and the auditory. Given my hearing loss, the visual energy that I get from working in 360° VR media has provided some sensory relief! While the case studies that I've reviewed have not been directly related to disabilities, the company's technology actively transforms emotive storytelling media into greater awareness and empathy, making it a remarkable fit for delivering impactful stories of struggle and triumph.

More than during any other point in my life, I became fully connected to the hearing loss community on the journey toward embracing my hearing loss. Advanced Bionics, the maker of my cochlear implant and Harmony behind-the-ear processor, invited me to share my experiences in New York City and then speak at their headquarters in California. At a Bionic Ear Association meeting in New Jersey, with other CI recipients and their families, I felt grateful to be able to relay words of calm and hope to parents uncertain about post-procedure changes for their child and family.

I have given speeches at, and recently became a trustee of, the Hearing Loss Association of America (HLAA)’s New Jersey chapter, through which I had earned a scholarship in high school. I joined the HLAA’s Walk4Hearing fundraising event and met with legislators in Trenton, New Jersey’s capital, to be present for the Assembly Committee on Education, Science, and Technology because they were voting on Bill 1896, the Deaf Student's Bill of Rights.

The many facets of hearing loss—education, advocacy, empathy, awareness—all have become priorities for me.

Knowing When You Need Support

It’s crazy that I used to think I could succeed without the hearing loss community. They have my back and are forever my tribe. Having a community means you will work together to be your best self for one another. My parents knew how to ask for help, but it took me a little longer to realize the importance of being vulnerable and asking for assistance—and then being able to pay it forward by helping others.

In 5th grade, when I was about 10, I was playing soccer toward the end of the day, with the daylight waning, when the unthinkable happened: I lost my headpiece. No processor, no hearing. I was in the middle of the field, trying to figure out what to do, feeling frustrated and anxious. My soccer coach came over and asked, “What happened?”

I read his lips to know what he was asking, and he explained that the team had to ask more questions to help me find it: “What does it look like? If you don't find it, what will you do? And, how are you?” Which I felt like was a weird question because they wanted to know if I was upset—and I said, yes!

But what they said to me next was, “What can we do to make you feel better?” I really appreciated that they didn’t say “you should” or “you’d better”—they weren't saying hearing loss was a barrier. It was more that they were saying how can we make you feel better, as a person.

We stood in a long line horizontally to cover the field, and slowly stepped across the dirt together, scanning the ground. Amazingly, we found it! I had told myself that if I didn't find it, it would be okay. But everyone else said, “No, we will find this! This is a part of who you are, this is what you need, we’re here for you.” They were saying to me that this is a part of your identity and let's make sure you go home, whole. The team came together for me.

In Turn, Helping Others

Something I had not paid any attention to as a kid is the behind-the-scenes work, the village of hearing healthcare professionals and other experts who work together to create the churning machine that says, “Here are the resources, here are the services so that these kids can succeed.”

I can’t overstate the value of Facebook groups that keep me connected to the community of cochlear implant users, people who have upcoming surgeries or family or friends who do. Get connected through online communities, word of mouth, or introductions by your audiologist or CI manufacturer.

True, I say this like it’s super-easy to send a message to a complete stranger! But I am highly confident that any person with a new diagnosis of hearing loss while find an outpouring of support and friendship from these connections, and will be uplifted and less unnerved after speaking, meeting, and bonding with the vibrant, full-of-life people across the hearing loss spectrum.

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I thoroughly enjoy being a working professional, advocate, and public speaker. In speeches I’ve made to the hearing loss community, I am candid about how I had not realized the value of their community, how I did not want to accept being different. Often people react with surprise or even dismay, but I usually see a few people who are nodding in agreement that we need to share how there are daily struggles and doubts, and that not everything is easy or cheery all the time.

Our journeys must take a measure of self-acceptance about being different, whether we use a cochlear implant, hearing aid, or sign language. Being different from the hearing society is the best thing that I've ever experienced. From the vantage point of my advanced age of 22, I can now see that in your tweens and teens you want to just be like everyone else. It is not until later that you realize that being different, that standing out, is in fact great! My hearing loss is my superpower.

This article originally appeared in the Spring 2019 issue of Hearing Health magazine. Frank is also a participant in HHF’s Faces of Hearing Loss project.

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Hair Cell Eulogy

By Dawn Doig

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People don’t seem to understand the damage they’ll incur
The way that birds’ songs, music, voices, all become a blur -
When the ears are not protected from loud music, shotgun blasts;
The birdsong they heard yesterday may have been their last...

The problem is maybe ignorance, lack of info about the ear
And how its “innards” function when it’s enabling us to hear.
The inner ear is lined with hair cells that when healthy will respond
To incoming sound energy from the ear canal and beyond.

Some hair cells dance to drum beats, some dance to jingling bells,
But regardless of the dance they do, they know their dances well.
The mighty “Endo” (Endolymph) taught them all from the very start
To learn the dance for hearing’s sake; to learn it all by heart.

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Endolymph is a fluid that courses through the inner ear
And when Endo starts to move too fast, the hair cells cringe with fear -
Fear of death impending if Endo moves too fast
For hair cells fall like blades of grass as Endo rages past.

What causes Endo’s rages? - for a warning’s never there
And the hair cells least expecting are the ones who never fare.
Amidst a dance of merriment, the rage takes them by surprise
And one by one the hair cells die before the others’ eyes.

One day a shotgun blast went off and downed a startled moose
Another day another blast downed an unsuspecting goose.
Both moments enraged Endo, who pounded in his fury
And lunged upon some hair cells who would otherwise be merry.

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The dance to birds’ songs dwindled first as yet another hair cell died;
The remainder knew their fate too well and curled up and cried -
They wept for all their comrades who had lost their lives in vain,
If only muffs or earplugs were worn, they would not have such pain.

They had to strain for spoken words, some still tried to dance,
But numbers now as they were, the hair cells didn’t have a chance.
How hard they tried to make new sounds as loud and clear as before,
But with their numbers now so low, they couldn’t do it anymore.

Farm machinery, music blaring at volumes much too high,
Snowmobiling, off-roading - they all make hair cells die.
Why risk the chance of losing a hair cell dance or two?
Wear ear protection and smother Endo’s rage -

THE DECISION’S UP TO YOU!!

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Dawn Diog is a clinical audiologist. Originally from Victoria, British Columbia, Canada,, she resides in Cameroon, West Africa where she is the English Language Learners (ELL) coordinator for the American School of Yaounde.

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Doing My Best

By India Mattia

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My hearing loss appeared suddenly, at age 61, when I woke up for work unable to hear in my right ear. With no history of difficulty hearing, I was completely stunned. Did I, I wondered, damage my ear with loud music in my headset yesterday?

In a panic, I requested an immediate appointment with my primary care doctor. He prescribed antibiotics and recommended I see an ear, nose, and throat doctor (ENT, or otolaryngologist) if my hearing did not return.

The antibiotics did not help my hearing, and upon the visit to the ENT I learned I had become completely deaf in my right ear and had developed a small hearing loss in my left ear. She suggested injecting steroids into my right ear to restore my hearing. I was apprehensive about having a needle stuck in my ear, but the doctor assured me that the novocaine would numb any pain. I agreed, and the procedure made me feel dizzy.  

One week and two injections later, my hearing had not come back. The ENT could not identify the cause with certainty. She thought it might be an infection. But I couldn’t think of ways I would have gotten infected, and to me I didn’t see any obvious signs of an infection.

Soon my hearing loss was accompanied by vertigo, tinnitus, and ear pain. Every time I moved a certain way, I felt my head spin. I relied on the keep the radio to block out my tinnitus and took Tylenol to dull the pain. My ENT referred me to a specialist at John Hopkins Hospital, but the first appointment I could secure was two months away, in August.

Meanwhile, I began to adapt to the challenges of hearing loss in my daily life. No longer able to hear my alarm clock to wake up for work, I switched to a vibrating pillow alarm. I watched TV with Bluetooth headphones to avoid disturbing my family with the high volume I needed to hear. I couldn’t manage noisy spaces, though. Restaurants, outdoor events, and loud traffic were unbearable to me.

I began to feel embarrassed and ashamed of having to ask people to speak louder or repeat themselves. I was afraid to tell my coworkers at the real estate office where we worked, but confided in my supervisor, who was sympathetic. Outside of work, my husband often advocated for me by telling others about my hearing loss.

When I thought circumstances couldn’t get worse, I learned my office was to close in July, leaving me without a job. I hoped to make ends meet with the severance pay and unemployment compensation while looking for work.

The John Hopkins doctor confirmed an infection had caused permanent sensorineural hearing loss in my right ear. He recommended a hearing aid, but I cannot afford one.

I remain without a job and my unemployment compensation has ended. I have had a few job interviews—but have kept my hearing loss a secret—and have done my best understand the interviewers’ spoken questions. Aside from my hearing loss, age discrimination makes job hunting difficult. I don’t qualify for social security disability benefits because my hearing loss is only in one ear.

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All this said, my hearing loss has led me to make some positive lifestyle changes. I read more often than before and have swapped rock and roll for soft music. I’ve reduced my sodium intake and eliminated caffeine which is supposed to improve blood flow to the ear. I ride an exercise bike and have taken up t’ai chi to stay physically active.

I applied for early social security retirement since I will be 62 in June. I am also applying for social security disability for both my hearing loss and asthma, which I have had since my late 20s. I am hopeful something will come through. My story may not have an inspiring ending, but I’m doing my best and looking toward better days.

India Mattia lives in Maryland.

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A Woman's Canine Ears

By Barbara M.      

I always knew I wanted to work with people after high school. Though I struggled throughout my education, I graduated, miraculously, thanks to my supportive family and hearing aid technology. With a high school degree I was eligible for Vocational Nurses (VN) school, a career I maintained for over 23 years.

My sensorineural hearing loss was diagnosed at around age 4, well before newborn hearing screenings were commonplace, in 1954. “Barbie needs to see your face when you talk, Mommy,” my sister announced one day, cluing my parents into a possible hearing problem.

Barbara and her current hearing dog (HD), Fallon.

Barbara and her current hearing dog (HD), Fallon.

I wore behind-the-ear hearing aids and equally relied upon speech-reading, but academics were a constant challenge. Math was the most difficult for me because my teachers often faced the chalkboards, not us students, while writing and explaining equations. My family spent many hours tutoring math to me to ensure I passed.

After high school, I was employed as a nurse’s aide in a long-term care facility. I enjoyed working with and helping the elderly patients, which encouraged me to apply to VN training school. I entered with strong professional references and my two instructors were aware of my hearing loss, so I felt secure.

During the last week of the six-week academic training, which immediately precedes clinical duty training, one of the VN instructors requested a private meeting. She had concerns about my hearing loss. “What if you’re in a situation where you could not hear a patient call/cry out?” she pressed.

Devastated, I reasoned with her hoping she would allow me to begin clinical duty on a trial basis to prove my ability to meet their expectations. I suggested this even though I knew in my heart it would personally difficult to withstand 17 additional months of required training under her surveillance. She pushed back, expressing I could be jeopardizing a patient's life or she could lose her job. I was crushed! I ultimately chose to withdraw from this VN school, knowing I’d be accepted to another school. I was—and graduated to go on to pass the California State Board for licensure.

Some time after my licensure, I was driving past my first VN school and a thought occurred to me; I needed to share my good news with my once doubtful instructor. The instructor with whom I spoke remembered me and congratulated me on my achievement. We chatted amicably before she revealed that the 'other' instructor had since resigned—due to hearing loss she experienced the year after I withdrew from the VN program. I was in disbelief! I hoped she, too, had not faced discrimination. Empathetically, I expressed my concern that no one should be discriminated against because of their disability.

About halfway into my nursing career, in the 1980s, I found myself with the need to to hear more and relied more on speech-reading. I often felt tired and mentally overloaded in noisy environments. One of my biggest challenges during this time was caring for my son, born in 1987. My husband, a firefighter who often worked 48-to-72-hour shifts away from home, cleverly devised a sound-activated light system to alert me when our son made noise or cried in his crib. This was a perfect solution, I thought—except in the case of power outages.

I needed to find another way to alert me to my son's voice at night. It came to me the following year while reading National Geographic, where I saw an advertisement about Canine Companions for Independence (CCI), a nonprofit organization that enhances the lives of people with disabilities by providing them with service dogs and ongoing support. I applied and was paired up with Ronnie, my first Hearing Dog (HD), who helped me immensely by alerting me to important sounds within my home.

Gradually and for unknown reasons my hearing loss continued to decline and I found myself avoiding noisy establishments & places. In 1999 I made the decision to resign from employment so as to ensure quality patient care I no longer was able to auscultate (hear) important lung sounds using the stethoscope. With my skills as a nurse, I chose to transition to be a care provider for my aging parents-in-law, and later, my mother.

I am personally proud that I was able to remain productive after my resignation, largely because of the assistance of my HD Ronnie and later, Fallon. Having been highly trained I considered them to be my canine-ear-partners, they alerted me to many important sounds such as doorbells, knocking, whistling tea kettles, and my telephone's ringing.

Ronnie and Fallon helped me to overcome my hidden handicap, a personal milestone towards acceptance of my hearing loss.

Barbara lives in Oregon with her husband, Dan.

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The Blast

By Jane Prawda

It was a crisp fall day when I was confronted by a catastrophic blast that changed my mental health, and life, forever. The violent noise caused permanent ear damage―and finding the right treatment has been a constant battle.

Auditory experts agree an untreated hearing condition can cause psychiatric disorders like depression and anxiety. At the time of the noise trauma, I had already been living with depression for decades, since age 17, making my particular circumstances quite difficult and emotionally devastating.

On that day I will never forget, I was alone on the sidewalk of Manhattan’s Upper East Side walking home. I had no warning when, suddenly, I heard a tremendous explosion at one of the notoriously noisy construction sites on Second Avenue. At the time, New York City was enlarging the “Q” subway line by more than 30 blocks, a project that left us residents subject to years of dangerous noise.

Construction site in Manhattan

Construction site in Manhattan

Without a place to turn for help following the blast, I continued walking home. By evening, in the silence of my apartment, I could hear a faint twinkling sound in my ears: tinnitus.

It wasn’t surprising that the tinnitus quickly worsened my mental wellbeing. Frightened by the ringing in my ears, I phoned my psychiatrist. He prescribed an anti-anxiety medication.

The tinnitus soon went away, but then months later it returned. Was I experiencing lingering effects of the blast, or was it the medication provoking these disturbing sounds? With their latest re-emergence, the sounds had become louder. I was scared and felt empty inside.

I went from clinician to clinician trying all sorts of new remedies, including lipoflavinoids, neurofeedback, acupuncture, and tinnitus retraining therapy, and found no relief. The constant ringing brought me to the verge of suicide―prevented by my younger brother. He understood my agony, and I am grateful for his empathy.

In 2014 I began an experimental treatment called transcranial magnetic stimulation (TMS), which uses highly-focused pulsed magnetic waves to stimulate nerve cells in the area of the brain that is thought to control mood. With the first treatment, the objective was to relieve tinnitus. Subsequent treatments were to relieve depression. Unfortunately, the one instance of the procedure was performed incorrectly, which not only worsened my hearing 30 dB, a mild hearing loss, but made the ringing present 24/7. It also caused transitory hyperacusis which, thankfully, I no longer live with today.

I was warned before the procedure that there was a slight chance I would lose hearing, but not that my tinnitus would become more persistent. With all symptoms worsened, I felt I’d arrived at another dead end and remained desperate for a solution.

Following the TMS treatments, I developed neuroplasticity, the brain’s formation of neural connections to adjust to injury. My audiologist believes neuroplasticity is what caused the hyperacusis to disappear and the tinnitus to subside considerably.

The tinnitus has come and gone according to my stress levels, at times even completely disappearing. With the help of my psychiatrist, I no longer struggle with depression. I’ve come to accept that a cure does not yet exist for tinnitus, so I cope in the best ways I can. Listening to the sounds of birds in the early morning, ocean waves, and babbling brooks using Resound Relief iPhone app always brought me great comfort.

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I’ve also adapted to my mild hearing loss. I inform people I meet that I have a hearing loss and to face me when they speak; that works for me.

Through all the trauma I consider myself to be a survivor, as I am the daughter of a Holocaust survivor. It is there I draw my strengths.

Jane Prawda MA, OTR, MS/Ed has been published for her expertise in occupational therapy, including Surviving 9/11: Impact and Experiences of Occupational Therapy Practitioners. She lives in New York City.

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Comfortable

By Joe Mussomeli

Being uncomfortable can be nerve-wracking, strange, and sometimes scary. For my brother, Alex, 14, being uncomfortable is all of these things. Born with a hearing loss, Alex has felt uncomfortable so many times in his life it’s impossible to count them all. He recently found himself in an especially uncomfortable situation when he was invited for a swim and sleepover at a friend’s house.

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To most teenagers, these activities aren’t uncomfortable; they’re fun. But when Alex received his invitation, he was overcome by anxiety related to his hearing loss. He worried he’d take too long to change into his swimming clothes, which include a shirt that attaches to his waterproof cochlear implant (CI). He dreaded others seeing him wear this. He feared he wouldn’t understand every word the other kids said in the pool. Above all, he was nervous the other kids would distance themselves from him because he was different.

Swimming wasn’t even the most distressing part. It was the mention of a sleepover that troubled Alex most. Just the mention of the word “sleepover” made his stomach tie into a knot. Every night, he removes his CI and hearing aid. He places the devices in a dry and store dehumidifier box, powers on the box, and then, finally, goes to sleep. Carrying out this routine at a sleepover would be, in theory, extremely difficult. Alex would have to keep his hearing devices on while talking to his friends at night. At the conversation’s end, Alex would have to take off his devices, but if it resumed, he would have to go through the hassle of putting his devices back on, or he would have to be left out. The whole situation would be unconventional and nerve-wracking for him. Essentially, it would be uncomfortable.

Alex was so uncomfortable that he almost declined the invitation until our dad pointed him in a different direction. The morning before the sleepover, Alex asked Dad if he should go to his friend's house. My dad told him that he should. Alex was quiet for a moment before he poured out all of his anxiety. He told him about how nervous he was and all of his other discomforts. Dad responded, “I won’t tell you what to do, but I will tell you this: Do you want to be uncomfortable your whole life, or are you willing to take a chance?” He left Alex to think over these words.

In the end, Alex didn’t go to the sleepover, but he went for a swim. Yes, it did take him longer than the other kids to change for the pool, and yes, he didn’t hear every word his friends said in the pool. But he still went, he dove into a pool of discomfort, dealt with it, and to his surprise, he had a bit of fun. He texted my dad an hour later asking if he could stay until at least 9 PM. My dad replied with three words: “If you’re comfortable.” Alex replied with two: “I am.”

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Ears On Fire

by Ben Meltzer 

I attended my first concert, Harry Chapin, at age 3. This was on March 24, 1977 at Painters Mill Music Fair in Owings Mills, Maryland. 14 years later, at the same venue, I saw my first of some 35 Bob Dylan concerts. I was a big concertgoer who wore earplugs only sporadically.

I had a great deal of additional noise exposure in an office where my colleagues and I were subjected to routine fire alarm testing during working hours. And for several weeks, I sat near a squealing printer that ran continuously.

In early 2007, I started feeling fullness in my left ear. Over the next nine months, it worsened. I experienced my first bout of fleeting tinnitus or SBUTT: sudden brief unilateral tapering tinnitus.

An ENT told me aural fullness is a common symptom of temporomandibular joint disorder, or TMJ, so I visited my dentist, who made me a mouthguard. It made my symptoms worse.

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Two weeks later, I awoke to find ordinary sounds were painfully loud. The honk of a car horn was excruciating, as was the roar of a lawnmower.

More debilitating than this knifelike pain from sound, however, was a constant burning pain in the ears that existed independent of sound. This symptom confounded the audiologist and ear doctors I saw. 

The loudness discomfort test I took at a prominent hospital indicated severe hyperacusis, but the audiologist there said she had never encountered a patient with constant ear pain. The institution’s inexperience with my symptoms unnerved me. 

Over the next two years–with time, quiet, and ear protection–I slowly improved. Then, two big noise insults in the same week proved catastrophic. At the dentist, with a dental drill whirring to my right, I felt something break in my right ear. A few days later, I was near the fire station when an air-raid siren blasted, loud enough to alert the whole town’s firefighters.

From then on, my symptoms of noise trauma―aural fullness, tinnitus, hyperacusis, and burning pain―intensified. The trauma turned my right ear red and veiny, and it became sensitive to wind and cold. When my hair grows longer, I feel it on my right ear more acutely than on my left. So I now have a “good ear” and a “bad ear,” with similar symptoms that differ in severity. 

Worst of all, the right ear could no longer tolerate an earplug or being covered with a protective earmuff. I get severe pain from merely covering the ear.  This symptom has mitigated slightly. I can now–more than 10 years post-injury–wear earmuffs for around 5 minutes on a good day and still not at all on a bad one.  Sometimes I feel as though there’s a lit match inside my ear. 

A noise injury worsens readily. For hyperacusis sufferers such as myself, quiet makes the condition better; noise makes it worse. Among sufferers this is indisputable, but medical practitioners bizarrely treat quiet as harmful. Too often they think the patient’s chief concern is hearing loss, rather than an intolerable perception of sound. 

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Two nonprofits currently researching noise-induced pain and pushing the field forward are Hyperacusis Research and Hearing Health Foundation. New discoveries, with scientific tools and techniques only recently available, show that noise is far more destructive than previously believed. 

I plan to donate my ears to the Temporal Bone Registry so that researchers will be able to examine them after my death to better understand hyperacusis, relieve it, and put an end to the misery endured by those like me.

Ben Meltzer is from Baltimore and now lives with his wife in New York.

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Becoming a Champion

By Rose DuMont

Leaving home for college with a severe to profound hearing loss was difficult. I graduated high school with high honors and had a lot of friends despite receiving only minimal support from my behind-the-ear hearing aids.

The inadequacy of my devices, which provided only a “soft” introduction to sound, soon caught up to me when I began my undergraduate studies. I struggled to hear my professors, and I was overwhelmed by the amount of responsibility I was required to take on. Among my many classmates in large lecture halls, I felt invisible and became lazy about attending classes. I was unable to fully participate in conversations with others.

In the first semester, I developed an ear infection that caused my right eardrum to burst. This immediately caused vertigo, which I wrote off as a one-time, horrible experience. I was in my dorm, where I remained on the floor for an hour until the world stopped spinning. It felt as if the floor had been ripped out from under me and nothing would be right ever again. I didn't throw up that first time, but I have thrown up nearly every time since.

Over the next two years, I experienced vertigo with increasing frequency. Eventually I was having attacks every few days. Every vertigo episode seemed never ending. Once the spinning stopped, there was no relief; just a feeling of impending doom. My tinnitus―which already affected me throughout my life―became more pronounced than ever before. The incessant white noise sometimes makes me feel like I am trapped in a huge indoor stadium with thousands of people talking at once.  I consulted an ENT at Mass Eye and Ear who administered three sets of vestibular tests, two MRIs, and multiple hearing tests over an 18-month period. Finally, at age 21, I received a Ménière's disease diagnosis and I searched and found a specialist at UMass Worcester for treatment.

Being given a definitive reason for my debilitating vertigo brought immense relief. At last, I could give a name to the source of my misery and take appropriate doctor-directed measures. I reduced my sodium intake, kept my weight in check, and tried my best to reduce stress.

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I was prescribed a low dose of Klonopin (taken daily) and Ativan (when I felt an attack coming on), which I took diligently for nearly 3 years before I decided I would rather not be reliant on drugs for the rest of my life. I voluntarily gave up driving for 2 years, not knowing when an episode would hit. Klonopin allowed me to lead a somewhat normal life and kept my vertigo at bay. Taking that daily, I was able to go to my college classes most of the time and began to drive a car again. Weaning myself off of Klonopin was one of the most difficult things I’ve ever had to do. It took me 9 months, but my body was able to compensate for the change as I slowly took my reliance off the drug and onto my own vestibular system. I took up yoga, started running marathons, encouraged the positive relationships in my life to outweigh the negative ones, and have continued my low-sodium diet for over a decade. My life is infinitely better becoming consistent with these practices.

At 23, I received a cochlear implant in my left ear at the recommendation of my audiologist. The day after my surgery, I had vertigo for 18 hours straight. Fortunately, I’ve never experienced something like that since. And, after getting my implant programmed and hearing my audiologist ask, “Can you hear me?” I knew it was the right decision. Cochlear implantation has enabled me to become more independent and, therefore, happier. I’m still excited by the new sounds I discover each day.

I started running long distance when I was 29, and am hooked on how good running makes me feel. Since I’ve started, my vertigo happens far less than it ever did (only 3 or 4 times a year!), and I know I am the one in control, instead of feeling as if Ménière's disease controls me. I’ve run 5 half marathons and 6 marathons, with my 7th in March in Washington, D.C. and 8th in June in Portland, OR.

At this point I can say Ménière's disease and my initial negative experiences in undergraduate school have impacted my life for the better. Ménière's is a lonely condition but it’s forced me to become much more self-reliant―an important trait to finding both work and friends wherever I go, as I’ve moved around the country. Before I could depend on myself, I’d look to everyone else to try to do things just like them. In college, for example, I tried to listen and take notes at the same time during classes before realizing, at age 30, that I’m not able to learn the same way as someone with typical hearing. Once I realized that, my Masters degree was a breeze, and I was able to easily earn my 3.9 GPA.

Ménière's disease does not affect all people the same way.  Not everyone has the same symptoms so it can be difficult to diagnose. Also, there isn’t one specific treatment. If one method doesn’t help, then you need to try another. Be patient and realize you are stronger than you think.

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If I could, I’d tell my younger self―just after my Ménière's diagnosis―this: “You are stronger than you think you are.” The same goes for anyone becoming acquainted with the condition. I’d tell them, “You’re a champion.” I’m not yet a running champion; I have never placed in a race. Though I can run a marathon in under 4 hours, my dream is to reduce my time by 20 minutes to qualify for the Boston Marathon. There I can compete alongside some of the best runners in the world, doing what keeps me balanced, relying only on myself.

Rose DuMont lives in Arizona where she works as a teacher of the deaf. She was diagnosed with hearing loss at age 5 and is a participant in HHF’s “Faces of Hearing Loss” project.

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Flying My Way

By Ryan Vlazny

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Airplanes and learning about their mechanisms have always made me feel alive. My longtime fascination with all things aerospace inspired my desire to work with computers for a living. But, at times, my hearing and vision loss caused some turbulence.

I was born profoundly deaf and later diagnosed with Usher syndrome―which combines deafness, retinitis pigmentosa (progressive vision loss), and problems with balance―at 8 years old.

Lucky for me, Usher lets me enjoy roller coaster rides with a perspective different than people with typical hearing and vision. I can more acutely feel the car’s ascent up the hill, the hang time at the top, the speed on the drops, the toggling back and forth on the track, and all the loops and twists in between. These sensations are most fun when I ride an inverted coaster―like my first “serious” ride in Oslo, Norway―with the track above me and my feet hanging in the air. I feel like I am flying.

My parents, heavily involved in the Deaf community, decided I’d learn Signing Exact English (SEE)―a manual communication system that, unlike ASL, matches English language and vocabulary―in place of spoken language. By the time I was in the eighth grade, I was fully emerged in mainstream classes, thanks to my parents’ commitment to my language development, and had undergone cochlear implantation. While I cannot understand spoken language with my cochlear implants (CIs), they allow me to hear laughter, birds, music, and the roar of a rollercoaster.

A few years after my CI surgery, airplanes replaced my passion for roller coasters. For my 17th birthday, I had the thrill of riding in an Pitts aerobatic airplane at the airport in Pompano Beach. The 20-minute charter ride felt like being on a roller coaster ride with 4,000 foot drops above the Everglades. The pilot, Jim, did a tricks that felt similar vertical loops on a roller coaster.

My mom and I took an (ordinary) airplane ride to Tallahassee when it was time for me to take the Florida Comprehensive Assessment Test (FCAT), a requirement to graduate high school in the state. There we spoke with government officials about making the test optional for students with hearing loss, and we were successful. Still, after three tries, I passed the FCAT even though the requirement had been eliminated.

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For the remainder of high school I continued on track, taking advantage of computer-related courses like web design and engineering. I was accepted to the Pre-Baccalaureate Engineering Program at the National Technical Institute for the Deaf at Rochester Institute of Technology (RIT), where I enrolled with a major in mechanical engineering concentrating in aerospace. Some math classes, especially differential equations, were too difficult, and with the support of my advisor, I changed my major to information technology (IT). Unlike with engineering, I felt I was able to fully understand and apply the concepts of IT.

As an IT student, I created a greeting card in Adobe Flash, a multimedia software program, about greeting a new student on my make-believe RIT World Airlines. The greeting card was even commended by the university president, Dr. William Destler in a one-on-one meeting.

Few college experiences compare with my opportunity to build my own airplane game in an application development class, though. The game simulated landing a plane, which other students found fun to play. Even though I wasn’t an aerospace student, I still got to enjoy some exciting plane rides at RIT.

Today I work as a Java developer for a financial technology firm, where I couldn’t be happier. I’m proud to be the pilot of my own career.

BIO: Ryan W. Vlazny lives in Pennsylvania.

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Making Friends and Influencing People

By Kathi Mestayer

Lorrie Moore, the author of “Who Will Run the Frog Hospital?” was in town in Williamsburg, Virginia, giving a reading at Tucker Hall at the College of William and Mary. My friend Susan had invited me, and I actually remembered the author’s name and knew that book was somewhere on my shelf, so I said yes.

My husband Mac had read the book, and was sure I would like it. I managed to find it on our jumbled bookshelves, which are kind of in alphabetical order (for fiction, at least). And it was short, only 147 pages! Before long, I realized that I had already read it, too. Not because I remembered anything, mind you, but because my marks and scars were present pencil lines in the margins, and a few dog-eared pages. Mac never marks up a book, or dog-ears the pages, and it drives him crazy when I do. So, it’s usually easy to tell whether I’ve read a book. In this case, I was probably walking that fine line with my fine lines.

I got 33 pages into the book, and it was lively stuff. One passage I had circled (in ink!) was, “She inhaled and held the smoke deep inside, like the worst secret in the world, and then let it burst from her in a cry.” I love revisiting a book, like a stone skipping over water, hitting the high spots thanks to my notes.

So when the day of the reading arrived, I went to listen to Lorrie Moore read her favorite passages in her own voice.

Wishful Thinking

When I got to the lecture hall, I sat by Susan, who was fortunately in the second row, near the aisle. Someone introduced Lorrie Moore. I couldn’t hear most of that, but it didn’t really matter. Then she got up to read, holding a big, thick book (her latest), with a microphone clipped to her lapel.

I couldn’t hear a word of it. It seemed as though she was muttering softly, but I’m not a good judge of that. I leaned over and whispered to Susan that I was having trouble hearing and was going to sit in the front row. Well, Susan outed me immediately, and informed the guy who had introduced Lorrie that she wasn’t audible. While I tried to surreptitiously move to the very center of the front row, he asked Lorrie to hold the lapel mic in her hand, so it could be closer to her mouth.

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She did that for a few minutes, but it got awkward when she needed to hold the book, too. And when she held the mic in her hand, it was so close to her mouth that her speech was distorted, with the P’s and T’s sounding like balloons popping. Tiny balloons, but enough to muddy her speech. For me.

So, at the suggestion of a young man on my right, she put the mic back on her lapel, but closer to her face. She asked, “Can everyone hear me now?” I didn’t turn around to see the response behind me, but it was clear that she got some no’s because she started playing around with the mic and saying, “How about now?” And, “Now?”

That was when one of the professors leapt over the front two rows, got on the stage, took the big, regular-mic holder (which was empty), bent it around to the front of the lectern, and clipped the tiny lapel mic to it. Okay. It was closer to her mouth, and she could use her hands for other things.

Let the reading begin. Again.

This time, she read for about 20 minutes, and I still couldn’t hear clearly enough to know what she was mumbling into the mic, with the P’s and T’s popping again due to its proximity to her mouth. I sat there patiently, not wanting to be disruptive again, and thought about other things, in between the audience’s intermittent chuckling. To my credit, I did not get my phone out to check my email.

After she was done, and the Q&A period started, I slunk out of the room, as quietly as possible. Others were doing the same, so I felt a little less rude. The next day, I got an apologetic email from Susan.

Not Just Me

A couple of days later, I was in a gift shop downtown, and a young woman behind the counter asked if I had been at the reading the other night in Tucker Hall. I said yes. Turns out, she was sitting right behind me. When I mentioned that I had a really hard time hearing in that space, she replied, “Oh, I HATE that room!  It’s the worst one on campus! I can never hear in there.”

The good news is that, the next time Susan invited me to a reading, she made a point of saying they had gotten the good mic back up and running. And, in fairness, making an entire campus of classrooms and other spaces hearing-friendly will take time, money… and attention. In fact, I’ve already managed to get an FM system installed in two auditoriums in another building on campus. So, slowly, the system is getting better, one complaint at a time.

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I think of that passage I ink-circled, about inhaling smoke like a big secret and letting it burst forth. Advocating to hear can put you in the spotlight, uncomfortably, especially in a group situation, but we should let our needs burst forth to help others who are no doubt in the same situation.

Kathi Mestayer is a staff writer for Hearing Health magazine.

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