personal stories

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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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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Helping Myself to Help Others

By Ryan Brown

My hearing loss was identified around the time I started kindergarten. I started asking “what?” a lot, and I didn’t always respond to those around me. Some of my teachers thought I was ignoring them or missing instructions on purpose. At home I began to sit closer to the TV with the volume up high.

Subtle behaviors like this in a child can sometimes go undetected, much like those of a student who struggles because he can’t read the board in the classroom. Thankfully, a teacher finally noticed that I was reading her lips and recommended that I see a speech-language pathologist. Eventually, I was referred to an audiologist, Sheila Klein, Au.D. She diagnosed me with moderate to severe bilateral hearing loss, most likely caused by recurrent ear infections when I was younger.

My mom distinctly remembers leaving Dr. Klein’s office with my new hearing aids. After we walked out the door into the parking lot, I took a few steps, stopped and looked around, then walked a few more. This was the first time I heard my jacket make a whoosh sound as I moved. I spent a lot of time that day hearing new things I had never noticed before.

Soon after that, Dr. Klein came to visit my school. She explained to my classmates what it means to have a hearing loss and why I needed hearing aids. I really appreciate this gesture  because it encouraged my classmates to be more accepting of someone who was different than them.

One of my favorite hobbies is music, and hearing aids have been instrumental to helping me understand and practice it. I enjoy creating electronic songs using a production software called Ableton, which provides a means of arranging music as well as a visual representations of sound waves. This tool is crucial because there are certain frequencies I simply cannot hear, and people without hearing loss may hear harsh noises that disrupt the sound I was aiming for. This feature allows me to filter those sounds out visually. Without my hearing aids, I would have a hard time noticing these details in the final product.

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I am in my third year of medical school, pursuing a career in Emergency Medicine. I spend most of my days assisting and learning from physicians at hospitals and clinics. The purpose of this training is to eventually be able to practice and treat patients on my own.

My aspiration to work in medicine came about during junior year of high school, when I sought help from my local Vocational Rehabilitation (VR) office. VR counselors provide career assistance to people with disabilities. Medicine requires one to use a stethoscope, so the VR counselors found an electronic stethoscope and headphones I could fit over my hearing aids. The headphones can be confusing for patients sometimes, but they understand once I start listening to their heart and lungs.

I’ve really enjoyed learning about the art and science of medicine. Problem solving and building a trustworthy relationship with a patient are crucial skills which I will continue to develop for the rest of my life.

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The impact my hearing aids have had in my development cannot be understated, but communication is still difficult at times even with them in. I have learned to be patient and understand that not everyone knows what it’s like to have hearing loss or wear devices like hearing aids. Sometimes there is a need for others to speak up or face me so that I can read their lips, especially in crowded places. Having to overcome challenges like this has instilled an important trait that is essential in medicine: empathy.

Ryan William Brown is a student at the University of North Dakota School of Medicine.

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How My Hearing Loss Makes Me Better at My Job

By Sarah Bricker

My hearing loss journey led me to a position as a communications specialist at Starkey Hearing Technologies, the Minnesota-based hearing aids manufacturer. Managing a hearing loss at work has meant that I sometimes have trouble hearing speech in noisy conference rooms, and that I may miss various sound cues during international phone calls. Yet as I navigate these challenges in the office, I can also see that having a hearing loss has actually helped me to become a better employee.

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I am comfortable asking for help. There’s a misconception that asking for help means you’re incapable of doing your job or it will make your boss or colleagues think less of you. But I see asking for assistance as showing an interest in learning and growth and a desire to recognize weaknesses and overcome them.

“Hard work” is my middle name. Having a disability often means I have to work a little harder than those with full abilities. I may have to try harder to hear in staff meetings, when talking to clients on the phone, or when attending a seminar in a large auditorium—but I also focus and do due diligence before and after meetings and calls to make sure I didn’t miss anything. Even with my hearing aids, it’s better to be safe than sorry.

I find creative solutions. Because my hearing loss can sometimes prevent me from doing something the usual way, I am always looking for an innovative approach. I believe this is a life skill that will enable me to take on challenging projects at the office and figure out solutions others may not have considered.

I am more accurate in my work.
I know I may miss parts of conversations and other sound signals, but being aware of this has set me up to be extremely detail-oriented otherwise. I am hyper-aware of all the minutiae and will carefully analyze each element of an assignment before I consider a project finished.

I work well alone and with a team! Having a hearing loss means I’ve learned the skills necessary to be self- sufficient and to succeed on my own. By the same token, my hearing loss has also given me an underlying “Go Team!” attitude from years of asking for help. I know I can rely on my team, whether it’s to fully follow a group discussion or to make sure I get all the notes I need in a conference hall.

I am patient. Hearing loss means I may have to listen to the same phrase three times before understanding it, but that’s okay. I’ve learned that getting it right is more important than getting it right now. That outlook is extremely beneficial when it comes to long-term projects and client relationships, not to mention everyday interactions with colleagues, friends, and family.

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Texas native Sarah Bricker holds a bachelor’s degree in journalism from the University of Missouri and is a communications specialist at Starkey Hearing Technologies in Minnesota. She has a profound progressive sensorineural hearing loss that was diagnosed at age 13. This article originally appeared in the Winter 2017 issue of Hearing Health magazine.

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A Muffled Life

By Jim Lynch

A Tricycle Mishap

For a 5-year-old a tricycle is a mini Lamborghini. Whether this particular model belonged to my family or our next-door neighbor has long since faded in memory, but what made it especially attractive was fashioned to its handlebar: a rubber squeeze-bulb and silver metal horn. Jackie Gilroy and I took turns riding it between our houses for hours during the summer before I was scheduled to enter first grade. We were particularly fascinated by the sound of the horn, a noise we could make louder by using two hands to squeeze air into the metal chamber.

I can’t remember which of us made the suggestion, but one day we discovered that if we placed our ears next to the horn, the sound was louder still. Therefore, in the impulsive and thoughtless manner of children, we took turns blaring that explosive clangor into each other’s ears at point blank range for a good part of the afternoon. We laughed at our discovery and discovered that the effect lasted even longer, with ringing in our ears.

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When I woke the next morning and came downstairs, my mother was at the stove finishing scrambled eggs for my breakfast. As she put my plate before me, I saw her lips moving, but I heard nothing. I put my hands to my ears and began to cry as she tried without success to converse with me. Not only couldn’t I hear her, but I also couldn’t hear my own words, or even the sound of my crying. Overnight, I had become completely deaf.

Facing It

Over the next few days, some muted hearing gradually returned. After I informed her of my squeeze-bulb horn activity, she made an appointment for us with an audiologist. After explaining to him what I had done, and undergoing what passed for extensive testing in midcentury (I remember a series of tuning forks and having to turn my head at various angles and respond to his whispered questions), he informed her that I had permanently damaged the nerve endings at the higher frequency range of hearing in both ears. I remember him telling her that what had happened to me was akin to a soldier’s hearing when a grenade goes off in close proximity. While I didn’t suffer physical injury, the hearing loss was the same.

Even if there were hearing aids available during that era, two things became readily clear: my family would not have been in a financial position to afford them, and, given the type of hearing loss I had sustained, they wouldn’t have helped. Whatever the quality or degree of auricular attenuation I had sustained, it was permanent, and would last for the rest of my life. At five years of age, however, I was simply happy to have regained a measure of hearing. Whatever consequences suffered by Jackie Gilroy are lost to memory.

At that point in my young life, I had little trouble understanding my parents, siblings and friends who were in close proximity. They sometimes had to get my attention if my head were turned (my brothers would often yell, “Hey Beltone!”), but face-to-face conversation was possible. Even so, my parents decided to postpone enrolling me in first grade that September, with the hope that things might somehow improve before I would need to function in a classroom environment.

Starting first grade a year later, I began a long auditory adjustment that paralleled any and all social interaction. My hearing difficulty often appeared to teachers and fellow students as indifference, disrespect or stupidity. High-frequency loss also made it impossible to hear the syllables of some words, and therefore difficult to pronounce them as well.

The “ed” on the past tense of “ask,” for example completely disappeared. Sibilant syllables vanished from spoken words, and the susurration of whispers made them indecipherable. Embarrassment and mockery are stern but effective teachers, however, and they provided remarkable motivation for a trial-and-error approach to the demands of a wider world.

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And Faking It

I soon ascertained that there were many compensatory methods to bring to bear on my degraded hearing. I quickly learned, for example, that the first hint of what others were saying lay in their facial expressions. A frown, scowl or smile provided a starting point for what was to come.

Tone of voice was also a powerful indicator. A flat, staccato grouping of words coupled with a stern expression were causes for apprehension, while a soft, lilting tone combined with an open face often indicated harmony or agreement. If a speaker’s inflection turned up at the end of his sentence, he was likely posing a question.

I further adapted to a system of filling in the gaps when some of the words in a sentence went unheard because of distance, volume or pronunciation. “In what____ was the _______Armada ________ by Great _______?” From the back of the class, such an obvious question (upward inflection at end of sentence) could be understood in sufficient time by a student with hearing loss who had read the assigned history chapter. Those strategies worked with a modicum of success in a classroom where one person spoke at a time. In a noisy environment, however, sounds grew more remote and understanding more problematic.

When as an adult I had an extensive and more sophisticated evaluation done by an audiologist, I discovered that my hearing levels were 70% of normal in the left ear, and 72% in the right. Because of years of adapted strategies, however, my range of understanding registered in the low 90% level for both ears in a quiet, isolated environment.

Lingering Difficulties and Treatment at Last

Nevertheless, song lyrics and movie dialogue continued to pose problems. Because the usual strategies often failed in such circumstances, I often relied on imagination to provide meaning. With resourceful creativity, I used the melody of songs, and the tone of cinematic dialogue, as well as body language of the actors, to provide sufficient clues to the overall context of songs and movies. I sometimes think that my imagination provided better lyrics and dialogue than the lyricist or scriptwriter.

Not until 2005 did technology become available to augment my adaptive methodology. The devices I now use improve my hearing marginally, but I still rely on a lifetime of learned maneuvers to interact with others. Although the sounds of previously difficult sibilant syllables became somewhat crisper, other problems remain or were created.

A moderate wind sounds like a typhoon when it blows over the device’s microphone. In addition, ambient noise levels can still totally negate any level of discernment. At a social gathering such as a wedding reception, for example, the murmur and babble of guests make understanding people directly across a table hit-and-miss. When the band or DJ begins, I must cease conversation altogether, except to respond to the person to my immediate right or left, and then with considerable difficulty.

In the classroom, my disadvantage created a different approach to interaction with students. Because I was fortunate to teach in an atmosphere of deference and tranquility, the majority of conversations with students proceeded nicely. Sometimes, however, soft-spoken or rapid-speaking students, or those in the rear of the class could pose problems. If a request for a repeated question or comment failed to generate clarity, years of learned compensatory techniques usually facilitated sufficient comprehension.

It Made Me a Better Teacher

In retrospect, I suspect that my auditory deficit, and the changes it wrought, made me a better teacher than I would have been with typical hearing. Because I had to utilize alternate methods and techniques (with a visible keenness of focus) to interact with students, my interest in their opinions and evaluations must have conveyed an unusual intensity. As I strained to comprehend their questions, concerns and comments, my physical demeanor emphatically registered the genuine value I placed on understanding their questions and comments in class discussions.

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While a reduction in the ability to hear does not rise to the level of a significant physical disability, it changes the manner in which one must approach life. Such changes, although onerous, can also foster unforeseen advantages. My career as an educator was predicated on an adaptive approach to classroom procedure and management. Without a youthful hearing injury, I may not have gravitated toward teaching at all, or have enjoyed four decades of participation in that noble profession.

Jim Lynch was a high school English teacher for nearly four decades in the Wilkes-Barre, Pennsylvania area, as well as an adjunct English instructor at area universities and a community college. In retirement, he resides in Fleetwood, Pennsylvania with his wife of 51 years and two cats.

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One Person’s Lifelong Experience with Hearing Loss

By Dr. Bruce L. Douglas

I am a 93-year-old healthy adult with hearing loss. Many parts of my body don’t work perfectly right anymore, but my hearing loss is my biggest physical difficulty.

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When it comes to hearing loss, I’ve been there and done that. Despite the fact that I am legally deaf, I can hear. Why? Because I’ve stubbornly fought back every time a hearing pitfall appeared in my path.

The reason I can hear is because I refuse to give into my disability. I try out every kind of useful assistive hearing device I can lay my hands on or is given to me by my Department of Veterans Affairs (VA) audiologist. I’ve become a hearing loss activist and fight for coiling of public facilities whenever I have the chance to do so. And I recently had a cochlear implant installed about a year ago.

As a boy, I remember always taking a seat at the front of the room, when most other kids would vie for one in the back, so they could cheat on exams without being seen by the teacher. I didn’t realize how poor my hearing was until I was reprimanded for inconspicuously (I thought) using a nail clipper under my desk in my elementary school classroom. I had no idea because I couldn’t hear it!

I tried to come to terms with my hearing loss for many years. I refused to hide in corners of rooms and restaurants, and dealt with my problem largely by disclosing my hearing loss to people and asking for their cooperation in our verbal relationships. My early hearing aids only allowed me to hear sounds but not comprehend them, so I learned to lip read and stare at my companions, often to the point of distraction.  

I have presbycusis, I’m suffering from acoustic trauma from my time in the Korean War, I have sensorineural deprivation, and I’ve experienced every imaginable kind of sound and sensation in the form of tinnitus.

Call us what you will, but don’t ignore us; don’t make fun of us. Most importantly, respect us; and treat us as equals. Be patient with us and accept the reality that we have an invisible condition that wove its way into our nervous system, most often beyond our control, and we do all we can to listen to you and respond to the best of our ability.

Dr. Bruce Douglas is a Professor of Health and Aging at the University of Illinois at Chicago School of Public Health. He is a participant in HHF’s Faces of Hearing Loss campaign.

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You Are a Masterpiece

By Sophia Boccard

The day before Fourth of July, 2012, the second diagnosis came in. “It’s true, you have Usher syndrome,” announced the retinal specialist. Baffled and unwilling to accept the corroboration of the first retinal specialist’s initial diagnosis, I immediately responded with, “I’d like another opinion—is there anyone you can recommend?” In between both appointments, I had learned that Usher syndrome is the most common genetic cause of combined deafness and blindness.

Credit: Evan McGlinn

Credit: Evan McGlinn

The hearing loss diagnosis was not a new discovery. It had been detected when I was 4; my parents were told I lost my hearing as a reaction to an antibiotic given to me during an emergency surgery. Since then, having moderate to severe bilateral hearing loss meant wearing hearing aids, attending speech therapy classes, and walking around with an assistive FM listening system in school.

Growing up with a hearing loss gave me a new perspective. I had to learn to defend myself against bullies who would occasionally yank my hearing aids and throw them in the trash. And yet, here I was refusing to accept this “other” condition and learning that I had a combined hearing and vision loss diagnosis. After 26 years of thinking otherwise, it was certainly a rude awakening to learn that the hearing loss was not caused by the antibiotic.

Just a few short weeks before, I had been sitting in my optometrist’s office for a routine eye exam to refill my prescription for contact lenses. The optometrist noticed some inconsistencies during my examinations and asked me to stay for more thorough exams. A standard 20-minute visit turned into a two-hour ordeal. After reviewing the results she somberly referred me to the retinal eye specialist who gave me the initial diagnosis.

This retinal eye specialist—who was the first person to utter, “You have Usher syndrome” to me—had the worst bedside manner. I refused to just take his word for it. Immediately after I left his office I cried—a lot—but then regained my composure and made a few calls to see a second retinal eye specialist doctor for a second opinion.

And so on that day in July, even after the second retinal specialist reiterated the first specialist’s diagnosis, I insisted on seeing a third specialist who would prove them both wrong.

I went to the National Eye Institute (NEI), part of the National Institutes of Health, in Bethesda, Maryland, for the third opinion. It was there at the NEI when everything came to a screeching halt and the final diagnosis was confirmed with a genetic test.

The test showed I was born with the mutated gene USH2A, a double recessive genetic disorder that requires both parents to have the exact same copy of the gene. Usher syndrome has three types—types 1, 2, and 3—each with many subtypes such as Usher 2A, Usher 3A, Usher 1F, etc. Combined there are approximately 400,000 people worldwide who have been diagnosed with Usher syndrome. But even with 400,000 people around the world with Usher, there still isn’t enough information easily accessible for individuals who receive this diagnosis.

Sophia and her family.

Sophia and her family.

That day at the NEI launched the next phase of my life. In the biography of my life, the following four years, 2012 to 2016, could be titled “My Wasted Years.” This is when I became a recluse, felt sorry for myself, and cried. Every. Single. Day. I had no way of expressing my sadness or even articulating my feelings, as I didn’t even know what it was I was feeling and how to cope with it.

Those were the years I felt as if I went blind overnight (and let me be clear, I did not go blind overnight—nor will I go blind overnight). I felt like there was this black cloud following me everywhere, hovering over my head and bringing constant rain, making me feel like a drowned rat.

Depression became my reality and my identity. I told a few people about the diagnosis but couldn’t elaborate on the condition since I felt like my world was ending. My desire to live was negligible. How could I imagine life with no sight? What would the quality of my life be like? What would I do without my independence?

These were all questions that ran through my head as the life I imagined living slowly started disappearing from my mind into total darkness. For four long years I asked myself repeatedly, What is the point? What do I have to look forward to?

Then it hit me. Literally. I was walking through Times Square during rush hour, a scenario that can overwhelm most people, when I slammed into someone who screamed into my face, “Watch where you’re going, a**hole!” It was in that instant that an internal shift took over and I shouted back, “Get out of MY way, a**hole!”

It was then I accepted I needed to stop looking at myself as a victim of a mutated gene and to start owning it.

I took a step back and recognized that all this time I had erroneously pitied myself. I felt sorry for my own future and what I was going to lose, and I forgot what it meant to just live life. In preparing for a future with vision loss, I was preparing for an apocalypse that would never come—unless I let it. I needed to stop judging myself and learn to respect myself all over again.

Thus 2016 marked the year of learning to be in control of my own reality, a brand new chapter in this biography of my life. I reached out to the NEI to connect me with someone with Usher syndrome who was willing to exchange emails and stories. Soon after, the NEI introduced me to another patient with USH2A who, after initially being pen (well, email) pals, we became “Ushties” (Usher + besties). Later that year I went to an Usher Syndrome Conference, held by the Usher Syndrome Coalition, in Seattle, and continued meeting many incredible, inspirational people who today are still some of my closest friends.

With these newfound connections I began advocating for both hearing loss and vision impairment communities. Through a friend, I was introduced to Hearing Health Foundation (HHF) and joined their Young Professionals Board for two years before being invited to sit on HHF’s Board of Directors. I also currently sit on the board of the Usher Syndrome Society and am involved with Young Professionals Groups at both the Foundation Fighting Blindness and the Greater New York Chapter of the ALS Association, fighting the progressive neurodegenerative condition known as Lou Gehrig’s disease.

My fiancé and I have also decided to learn American Sign Language as a tool to communicate with new friends from the Usher community. Fundraising and awareness events have started to fill up my calendar. I look at each event as an opportunity to educate those who are unfamiliar with the importance of hearing and vision health and what it means to lose your hearing or your vision, either in part or completely.

For me, it’s the lack of awareness about how the diagnosis of either hearing or vision loss can have an effect on the individual’s own mental health as well as that of their loved ones. There is not enough support for the recently diagnosed. The public isn’t familiar with how to accommodate someone with hearing or vision loss, and since both conditions are not entirely transparent—it’s difficult for people to recognize that they are communicating with an individual with hearing or vision loss —it makes it that much harder to help.

I’m most proud to have the opportunity to teach willing learners that being deaf or blind is not something to pity but rather something to respect. I strive to demonstrate to others that even with our limitations we can still do everything we want, even if we need a little extra help getting there.

Not too long ago someone said to my fiancé, “Sophia is so lucky to have you. You are an incredible person for staying with her even through her diagnosis.” Wait a second, what? My first thought was that my fiancé is the lucky one! To be fair, neither one of us is any more “lucky” than the other. We both equally  deserve each other—and despite comments like these, mostly well-intended (or not), no one will succeed at making me feel less of a person.

While we can each feel insignificant about our own lives when there are so many success stories of extraordinary people pulling off impossible accomplishments despite their limitations, let’s remember that we are each the star of our own story. We are the masterpieces of our own reality.

My story doesn't have a neat ending or a twist, reassuring the reader with a fairy tale conclusion. I’m just here to remind you, my new friend, that I’m not broken. I’m not half of a person; I’m not someone to “fix.” Usher syndrome is a part of who I am, but it is not my identity. I am a human being, who like any and everyone else, is whole and perfect just as I am.

If you have a health condition, don’t let it consume you. Own it. You are the badass who can survive against all odds. People are lucky to have you in their lives. Remind yourself to feel appreciated, get out there, and please, embrace your newfound celebrity status!

HHF board member Sophia Boccard works in digital marketing and lives in New York City. She wrote about an Usher Syndrome Society event she helped organize. This article original appeared in the Spring 2018 issue of Hearing Health magazine. For references, see hhf.org/spring2018-references.

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Hearing Loss Lives with Me

By Sonya Daniel

Sonya Faces of HL.jpeg

I was born with bilateral sensorineural hearing loss. I didn’t know the official term for it until 2008. When I was a kid in elementary school I passed every hearing test that the mothers in the PTA administered. I was a pretty clever little girl. I learned that every test has a visible “tell” and knew how to guess “right” on all of them. I never wanted to fail any test. I learned to read lips, and assumed everyone heard that annoying ringing constantly. That, of course isn’t true.

The tinnitus became too overwhelming to deal with everyday. I hadn’t had my ears tested since I was little, so I didn’t know what to expect. It was much worse than I had ever imagined it would be. And now it had a name. I left the audiologist knowing at some point I’d be completely deaf. But, no one knows when that might be. I was a mother to three young boys. I wondered how much longer I’d hear, “Mommy, I love you.” Or If they’d hold out long enough to hear their grown-up man voices. How much longer until I couldn’t hear music?

Music is my passion. In fact, it’s my chosen profession. I never remember wanting to do anything but be a musician in some capacity. My dad played the guitar. My mother said when I was little I would sit in front of him and touch his guitar and I would stand in front of the stereo and touch the speakers. I suppose I was trying to “hear” the music. I knew I’d go to college and major in music as a vocalist. I knew I wanted to share my love for music and teach others.

College was a very difficult and stressful time. There was a course called “Sight Singing and Ear Training” required to complete my Bachelor’s in Music. I mean, come on! Ear training? I struggled. Professors struggled to teach me. Some never gave up because it was apparent I wasn’t going anywhere.

I did get to teach music to every level. I can’t do that anymore, but I still do music everyday. Sometimes in life you have to know that there are things that your body just won’t let you do. I’d like to be a 6’0” tall, blonde supermodel, too. My body said “no” to that and I think I’m ok.      
Living with tinnitus and hearing loss can be overwhelming and difficult. I’m not as afraid of living this way as I used to be. Everyone has a thing. This is just mine. I like to say I don’t live with hearing loss; it lives with me.

My journey has brought me to the cochlear implant. I’m a candidate in the preliminary stages of that process. Technology changes so fast it’s hard to keep up. My current devices have stronger receiver tubes and ear molds.

That’s just my journey with my ears. My life isn’t defined by or consumed with my ears, although it’s felt that way at times. I’m constantly learning and growing. I’m getting stronger with each high and low I face. But, isn’t that just life?

Sonya Daniel is a musician/teacher, writer, and voiceover artist. She is a participant in HHF’s “Faces of Hearing Loss” campaign.

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The Power of a Mother’s Advocacy

By Vicky Chan

Like most moms, Brandy has always been a champion for her three sons, Anthony, 12, Andersyn, 10, and Ayden, 7. Her sons are unlike most sons; each has bilateral sensorineural hearing loss and enlarged vestibular aqueduct syndrome.

Brandy’s journey as a parent-advocate had a difficult start. She was completely unfamiliar with hearing loss in children before she became a mother, and accessing proper treatment for the trio was a challenge. Brandy juggled numerous audiologist appointments that were a five-hour round-trip drive from home. And, for her oldest child, Anthony, a hearing loss diagnosis came two years delayed.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Anthony had typical speech development and passed all his first- and second-year wellness and hearing checks by his pediatrician. When he was 2, Anthony fell and hit his head. Brandy suspected the trauma had caused either hearing loss or a cognitive disorder, but the doctors assured her Anthony suffered no permanent damage and took no action for him.

Brandy’s instincts were correct. When her second child, Andersyn, was diagnosed with hearing loss at birth a few months after Anthony’s head injury, she insisted Anthony receive a detailed hearing evaluation. Born in 2005, Anthony never received a newborn screening despite the passage of the Newborn and Infant Hearing Screening and Intervention Act of 1999, which mandated the practice.

The legislation quickly improved the rate of newborn hearing screening. In 2005, 94.2% of babies in the U.S. were screened, but some states lagged behind. In Tennessee, where all three of Brandy’s sons were born, only 66.9% of newborns were tested—the lowest in the nation. Unfortunately, Anthony was among the 30.1% of Tennessee’s babies not screened. However, by Andersyn’s birth in 2007, the state’s rate increased to 91%. It was only due to Brandy’s perseverance that Anthony was ultimately given a comprehensive exam, diagnosed with severe bilateral hearing loss, and fitted for hearing aids.

Brandy’s message is that newborn screening is vital. “If your child has hearing loss, it is best to start intervention as soon as possible and have your child fitted for hearing aids or cochlear implants if they need them.”

With his hearing aids, Anthony was fascinated by all the new sounds he could hear—including the squishy sound of Brandy’s flip-flops as the pair walked through a parking lot. At that moment, Brandy realized it was likely that Anthony, like Andersyn, was born with hearing loss, but it only became detectable to her after his head injury.

Andersyn was given a newborn hearing test so Brandy knew immediately that he had severe bilateral hearing loss. Later on, one audiologist suggested he wasn’t benefiting from his hearing aids, but Brandy knew differently; with Andersyn’s hearing aids turned up, a sound as subtle as crinkling paper near his ears would startle him. Andersyn now does exceptionally well with hearing aids, as does Brandy’s third and youngest child, Ayden, who was also born with severe hearing loss in both ears. The boys’ doctors have cited a genetic connection of unknown cause.

Today, hearing loss is an ordinary part of life for her three boys, thanks to Brandy’s tireless advocacy. With help from FM systems and speech therapy, Anthony, Andersyn, and Ayden all receive a mainstream education. They enjoy baseball, basketball, hunting, swimming, riding four wheelers, and fishing. HHF’s CEO, Nadine Dehgan, exclaims, “All three boys are incredibly fortunate to have Brandy, a devoted mother who has prioritized their hearing health.”

Anthony, Andersyn, and Ayden are participants in HHF's "Faces of Hearing Loss" campaign.

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