Personal Stories

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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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 Ménière's Led Me to a Master’s

By Anthony M. Costello

Ménière's disease initially presented itself to me 20 years ago in a violent and unfortunate manner. I was 16 attending a New England boarding school when I experienced a vestibular (balance) episode, and it changed my health and life forever.

I remember vividly the vertigo that, without warning, controlled me. I remember the incredible pressure and fullness in my ears and the overwhelming sense of nausea. Realizing I could not stand I sought refuge in my bed, where the sensation of spinning intensified and I vomited profusely.

The school staff could only assume I was intoxicated and took disciplinary action. As I could not yet explain or understand that my behavior was caused by Ménière's disease, I had little recourse to justice. Faced by more unfair treatment, I left the school at the end of the academic year.

For the remainder of high school, I continued to struggle with bouts of vertigo, dizziness, and imbalance. These symptoms impacted my athletic performance, my ability to concentrate on my schoolwork, and my general quality of life. It was a difficult and confusing time as I appeared fine on the outside but I was internally battling a miserable existence that I could not fully understand or control. That paradox has since defined my life.

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When I received a formal diagnosis, my thoughts, priorities, and routines obsessively revolved around managing my wellness. This new mindset made it difficult to relate to the life I once had or to the lives of those around me. I made great efforts to hide my symptoms and protect loved ones from the negative emotional and physical effects of my disease. I made excuses to avoid social events just because of my illness.

Ménière's disease has repeatedly left me in states of hopeless despair. While it can be perceived as “strong” to persevere through one’s condition independently, I have learned this only leads to more isolation. Ménière's takes so much from its sufferers; it attacks their bodies, tests their spirits, and consumes their thoughts. This is why it is so important to reach out, be honest, and bring others into your world that you trust while you are living with Ménière's. Otherwise, you deprive yourself of not only your health but the relationships you deserve.

The etiology of Ménière's disease remains scientifically disputed and I do not claim to have the answer. But I do know the condition does not respond well to stress. I’ve spent every day of my life carefully crafting my decisions and actions based on how my Ménière's may react. In the process, I’ve come to master handling and mitigating stress. In fact, at 30 I went back to school for a master’s in psychotherapy in part to study stress and the human mind. I now licensed psychotherapist, a career change inspired by my conversations with newly diagnosed Ménière's patients in the waiting room of my ear, nose, and throat doctor’s office.

I have been fortunate to have had periods of relative remission with reduced vertigo. But there is a misconception that Ménière's just comes and goes, allowing the sufferer to return to normalcy in the interim. In reality, part of it is always there, be it the tinnitus, the difficulty hearing people in a crowded room, or the feeling the floor will start moving. There is always the uncertainty of what tomorrow will bring.

Using mindfulness—a meditation technique that helps one maintain in the present without judgment—has been helpful in calming my anxiety. Mindfulness is especially useful when my tinnitus feels overwhelming, and I sometimes I combine the practice with music, a white noise machine, or masking using a hearing aid.

I try to live my life in a manner in which Ménière's never wins. This disease will bring me to my knees—both literally and figuratively—but I just keep getting up. You can’t think your way out of this disease and spending all your time in a web of negative thoughts can be as toxic to your mind as Ménière's is to your inner ears. In my hopelessness, I try to stop my mind from plunging into the abyss and use every tool I can—making plans see friends and family, finding glimpses of joy in the midst of darkness, or being physically active. You have to retain some control when you feel like you have none.

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The only gift that Ménière's has given me is a level of introspection and awareness that I could not have attained in 10 lifetimes. It has stripped me down to my core and forced me to explore what is truly important and made me a better person. I don’t know who I would be without this disease, but I’m positive that person could not fathom the joy or gratitude I find in a moment of health.

Anthony M. Costello, LMFT, lives in Byfield, Massachusetts with his wife, daughter, and 2 dogs. He has a private practice and specializes in helping others with chronic illness. For more, see www.costellopsychotherapy.com.

Receive updates on life-changing hearing and balance research, resources, and personal stories by subscribing to HHF's free quarterly magazine and e-newsletter.

 
 
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Redefined Justice

By Casey Dandrea

Bob Downs was 18 years old when he received his first hearing loss diagnosis. Heading home from school one afternoon, he wandered curiously into an audiology clinic offering free hearing tests and agreed to take one. The audiologist informed him he had a substantial hearing loss and would benefit from hearing aids sold by the clinic. Skeptical and not willing to purchase hearing aids, Bob declined the treatment.

More than a decade later, Bob was driving his five-year-old son, Timmy, home from school when he discovered his distress coming from the back seat. Timmy was crying because his throat was in pain from him screaming at his father. “He was desperately trying to get me to hear him talk about his day at school, but I couldn’t hear him,” Bob said.

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Being unable to hear Tim encouraged Bob to take his hearing health more seriously and get another test. The new test results showed a hearing chart like the one presented to him as a teenager in the audiology clinic, but a lot worse. Bob has now been wearing hearing aids for 18 years.

Professionally, Bob’s hearing loss created some unexpected challenges. Shortly after he purchased his first pair of hearing aids, Bob worked in the call center of a large medical organization. His hearing loss combined with office background noise made it difficult for him to use the phone to schedule patient appointments, even with a telecoil feature for his hearing aids. The hectic environment of a medical office also made it challenging for Bob to communicate with colleagues and patients face-to-face. It was here that Bob first became highly aware of his professional limitations caused by hearing loss.

Bob was disappointed when his employer failed to provide proper workplace accommodations for his hearing loss. He brought the issue to the Equal Employment Opportunity Commission (EEOC)—the federal agency enforces civil rights laws for employees with disabilities—but never received justice from his former employer. His former employer actually denied Bob’s hearing loss, leaving him disheartened and deeply offended.

Discouraged by this legal outcome and required to tend to an urgent family emergency, Bob resigned from his call center position at the medical clinic to return to clerical work, a previous and familiar area of expertise. Bob faced similar obstacles in this line of work, too, and felt as if he were no longer able to contribute to the support of his family. “I was constantly paranoid about failing to hear my boss or a doctor or a technician calling after me from behind and would not be able to see that they were talking to me,” Bob recalls.

Bob realized a new profession—one involving less listening—may benefit him. He returned to college and earned his Associates Degree in 2013, where he is currently working toward his Bachelor’s degree in User Experience (UX) Design, which involves coding to improve people’s interactions with technology.  

Bob’s focus in UX Design is the Web Accessibility Initiative - Accessible Rich Internet Applications (WAI-ARIA), an interface that defines a way to make web content and web applications more accessible to people with disabilities. The typical functionality used in websites is not available to those who rely on screen reading or cannot use a computer mouse. Bob wishes to expand the usage of the required technical code specifications, making more web applications accessible to people with disabilities.

Although Bob was once reluctant to accept his hearing loss diagnosis, he’s proud to understand and advocate for the benefits of hearing loss treatment today. He urges other folks not to ignore their difficulties hearing or, worse, an audiogram showing a profound hearing loss, as he did at 18.  

Bob’s ability to remain persistent through discrimination and career changes is also commendable. Though Bob was unable to receive justice for the inequality he personally faced in his former workplace, he’s now creating his own form of justice for disability access through his newfound career.

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Facing the Music

By Joe Mussomeli

Every family has holiday traditions—ours is to visit New York City. For the past five years, my mom, dad, and brother, Alex, have committed a single hour drive to experience the magic of the greatest city in the world during Christmas time. When we arrive each December, Alex and I are in awe of the magical sight of neon Christmas lights covering Radio City and the giant tree in Rockefeller Center. Despite our fascination with the city’s holiday decor, nothing we see outside compares to the highlight of our annual tradition, attending a musical performance on Broadway.

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Our first musical, Annie, was an incredible experience for our family, but it was difficult for Alex. Born with a hearing loss, Alex uses a hearing aid and cochlear implant. Though his devices have greatly helped him over the years, there are some situations where their benefits are limited. While watching  Annie, Alex had trouble understanding some of the lines that the actors were saying, missing every few words spoken. As a result, he couldn’t grasp the full context of the story or make sense of the audience’s reactions. Whenever the audience laughed, Alex would laugh along with them. He laughed knowing that he had missed a word, had lost a sentence, and didn’t catch the joke.

Alex followed this copycat formula for the next few Broadway plays we attended. When we saw The Lion King, he was amazed by the costumes and the bright lights, but he couldn’t hear Timon and Pumbaa singing “Hakuna Matata.” The beautiful music in Aladdin delighted Alex, but he didn’t pick up on Jafar calling Aladdin a “diamond in the rough.” After we saw Aladdin, I asked Alex if he enjoyed the musical. He told me that he did, but felt as if viewing the show was like trying to complete a project without all the tools. For Alex, the musical was a puzzle and he had lost a few pieces while assembling the final product.

Last December, my family and I watched our newest musical, Dear Evan Hansen, and it was Alex’s favorite so far. We arrived at the theater happy to know there was  a closed captioning option for guests with hearing loss. Weeks before, my parents had called the captioning company that provides services for Broadway musicals and reserved a closed captioning device for Alex. He was given a small tablet and was told that the actors’ lines would appear on the tablet as they were spoken. Minutes later, the musical began, and Alex was just as invested in the show as the rest of the audience. Now, he could understand everything that was happening on stage! It was an enlightening experience for him. He understood every sentence, took in every word, and laughed at every joke, and not for the sake of laughing along to fit in, but because he got the joke. When we finished the musical I turned to Alex and asked him if he liked it. He replied with three words: “I loved it.” Finally, Alex had completed his puzzle with ease.

Joe Mussomeli is a 10th-grade student who lives in Westport, CT. His younger brother, Alex, has been featured in Hearing Health magazine and is a participant in HHF’s “Faces of Hearing Loss” campaign.

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Miracle Moments

By Casey Dandrea

Virginia toddler Charlotte (Charly)’s first experiences with sound using hearing aids captivated millions. The video, taken in 2017 when Charly was an infant, aired across multiple local television networks and went viral on the internet.

Photo credit: Christy Keane (   @    theblushingbluebird   )

Photo credit: Christy Keane (@theblushingbluebird)

Charly’s mother, Christy Keane, is heard fighting back tears in response to her daughter’s expressions. “I’ve never seen that face before. You’re going to make me cry,” Christy says as Charly displays a smile and her eyes light up. For the first time, Charly was visibly reacting to Christy’s voice.

Charly’s one-minute viral video debut was more than heartwarming—it was educational. With technology, children born with hearing loss can communicate just like those with typical hearing.

Christy’s understanding of profound hearing loss before Charly’s diagnosis was minimal. “I had never met a deaf person in my life and had absolutely no knowledge on hearing loss or intervention options,” Christy says. Following Charly’s birth, Christy immediately surrounded herself and family with a team of supportive specialists to earn more about pediatric hearing loss and options for treatment.

Charly was diagnosed with a bilateral profound sensorineural hearing loss at age 1 month after failing all three hearing tests as a newborn. She was fitted with hearing aids at 2 months old, which she wore for eight months prior to her cochlear implant (CI) surgery in June 2018. Christy and her husband chose cochlear implantation for their daughter because they wanted to give Charly the best access to speech and sound for her needs.

Christy and Charly. Photo credit: Christy Keane (   @    theblushingbluebird   )

Christy and Charly. Photo credit: Christy Keane (@theblushingbluebird)

Having had access to sound since infancy, Charly will enjoy the same opportunities as a child with typical hearing. Children who receive early intervention for hearing loss reduce their risk of falling behind in speech and language acquisition, academic achievement, and social and emotional development.

The video’s reception inspired Christy to chronicle her daughter’s progress on Instagram. Now with one hundred thousand followers, Christy is thankful to have touched so many individuals all over the world. Her #miraclemomentsoftheday posts, in which she records Charly’s reactions to her daily CI activation (and previously her hearing aids), are especially popular.

Christy is proud to have created a forum that provides encouragement to families of children with hearing loss. “Every day I receive a message from a parent of a newly diagnosed child and I can remember the exact emotions they are experiencing,” she says “I love to be an example of how fulfilling it is to be a parent-advocate and how quickly your perspective changes as you learn more about hearing loss and language options.”

Christy hopes to change perceptions of hearing loss offline, too. She volunteers with Virginia Hands & Voices, an organization that helps families of children with hearing loss. Ultimately, Christy is working to provide an atmosphere for families with children with hearing loss to come together to celebrate their achievements and share their experiences.

Casey Dandrea is an HHF intern studying journalism at Long Island University Brooklyn. For more on Charly’s progress, see Christy’s Instagram.

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