Personal Stories

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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The Bridge Between Two Worlds

By Vicky Chan

Disability rights attorney Jared Allebest was born with a bilateral profound hearing loss. He was diagnosed at age 1 and fitted for hearing aids a year later. Today, Jared uses both hearing aids and ASL to communicate.

The son of a lawyer, Jared was determined to follow in his father’s footsteps and his hearing loss never deterred him. Throughout his education, he remained inspired by his favorite elementary school teacher, Ms. Marquardt, who taught him one of the most invaluable lessons: Having a hearing loss isn’t a barrier to success. “[Hearing loss] has affected my outlook to fight harder and to push myself to accomplish the things that I want to do in my life,” Jared explains.

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After his graduation from Thomas Jefferson School of Law in 2009, Jared founded a law firm that advocates for people with hearing loss and speaking disabilities. The firm focuses on empowering their clients through education, advocacy, and lobbying. He works with clients with both typical hearing and hearing loss and takes on cases relating to disability rights or discrimination, as well as employment, marriage/divorce, and criminal law.

Jared admits that he faces auditory challenges in his profession. During trials, he has to be exceptionally attentive to all parties. He also receives assistance from an ASL interpreter in the courtroom so he doesn’t miss anything being said.

Despite some difficulty, Jared believes that his hearing loss is an advantage. His clients are more comfortable with him because they know he can empathize with them. People listen carefully when he speaks about issues concerning hearing loss. “By fighting for the rights of those who live with hearing loss, I am advocating for myself as well. I think of myself as the bridge between two worlds,” Jared says.

Jared’s strong reputation as a dedicated lawyer stems from his sincerity and passion for helping others with legal issues that are deeply personal to him. The most rewarding part of his profession is knowing that his clients are satisfied with his commitment.

Jared’s advocacy for the hearing loss community outside goes beyond the courtroom. He is the former chairman of Loop Utah—an advocacy group dedicated to educating people in Utah about the benefits of loop technology. He currently serves as a community representative on the Advisory Council to the Utah Division of Services to the Deaf and Hard of Hearing (USDB Advisory Council).

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Of course, Jared knows he can’t be an advocate for all people with hearing loss, as much as he would like to be. He can’t be the connection between the legal world and the hearing loss world for everyone. Jared maintains that the most important part of living with hearing loss is effective self-advocacy. “Being assertive about your needs will help you to hear better, be more productive, and be happier.”

Jared lives and practices law in Utah. He is a participant in HHF’s Faces of Hearing Loss campaign.

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Breaking The Silence

By Joe Mussomeli

If there's one thing my brother, Alex, and I love, it’s spending time with our cousins in Maryland. We’ve been visiting them for years now—each stay more fun than the last.

These visits have left us all with happy memories of holding Mario Bros. competitions on the Wii, playing tag downstairs, watching funny movies, and, most importantly, telling stories before bed. When we were little, we used to tell stories to each other all the time. Together we’d create ridiculous parodies of fairy tales taking place in obscure settings, including our own versions of Jack and the Beanstalk and The Jungle Book. We loved telling these stories.

One time, we finished telling our stories and readied ourselves for bed. As usual, my brother Alex took his hearing aid and cochlear implant off in preparation for sleep. After this, our cousin Lara, who was only five years old at the time, asked Alex a question. When he didn’t reply, she repeated her question. To her confusion, he didn’t say anything once more. Lara then called for my mom and asked why Alex wasn’t answering. My mom explained to Lara that when Alex takes off his hearing aid and implant, he cannot hear anything.

“He can’t hear anything?” Lara asked.

“He can’t hear anything,” my mom confirmed.

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Lara was silent for a few seconds before she said something; “You know, it’s challenging, but maybe it’s peaceful at times, not hearing a sound. Maybe it’s relaxing for him.”

Though our visits to Maryland are enjoyable, Alex’s hearing loss has presented challenges for our family when we go swimming with our cousins. When Alex was little, he was unable to wear his hearing devices while swimming, for they were not waterproof. This meant that he could not converse with our cousins in the pool; he couldn’t join in on the conversation in a meaningful way. He could talk, but he couldn’t respond. He could swim with them in the pool, splash water in their eyes, and laugh along with them. He just couldn’t hear his own laughter.

We all worried that Alex would get hurt while swimming without his hearing technology.  My cousins and I tried our best to help Alex when we were in the pool. We would always swim near him, making sure he was safe. I, in particular, would answer questions anyone was trying to ask Alex when he was in the water. I hope I did my best to help him out during these early years.

All of this changed when something marvelous entered our lives, a waterproof cover for his cochlear implant that makes it usable for swimming. This has made swimming so much better for Alex. He can now hear in the pool and can socialize with others. He can talk with our cousins, splash them with water, and hear his own laughter. Now, whenever someone asks him for his name, he can confidently say, “I’m Alex, what’s your name?”

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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Painting for a Cure

By Nicolle Cure

(Desplácese hacia abajo para ver la traducción al español.)

Credit: Lia Selfridge

My art is the fuel that ignites my passion for helping others. I use my art as a tool to create so that I can support the causes I believe in. Throughout my life, I have created several collections, for the most part biographical. To date, I've been blessed to have the opportunity to collaborate with animal welfare campaigns as well as education and health research initiatives. I am now proudly raising awareness about a particular cause that is dearest to my heart—hearing loss and vestibular (balance-related) disorders—after experiencing these conditions myself.

On August 4, 2017, I woke up and noticed that the right side of my head was numb. I felt a strong pressure in my right ear and couldn’t hear anything as my ear felt blocked and full. It was really scary and very sudden.

Since that day, I have been in and out the hospital trying to decipher what is wrong with me and how to cure it. My first audiology appointment showed a profound hearing loss in my right ear, and after steroids injected into the middle ear for two months, I was able to recover the ability to hear low frequencies. However, the high frequencies only improved to severe (from profound), which is why I now suffer from tinnitus and I am extremely sensitive to environmental sounds.

My hearing loss was only the beginning. During the initial months, I also suffered from BPPV (benign paroxysmal positional vertigo), debilitating vertigo episodes, chronic migraines, constant nausea, and dizziness. My balance was completely off and I swayed to the right when walking. It felt like I was walking on quicksand. Another symptom that persisted for months was chronic fatigue, to the point that I could not get out of bed on certain days. My body felt heavy as if I had a slab of concrete on top of me.

Nicolle painting in her studio. Credit: Lia Selfridge

Nicolle painting in her studio. Credit: Lia Selfridge

These “invisible conditions” can really affect patients an emotional level. I was completely isolated from the world, I didn’t want to see anyone, and I avoided phone calls and going out. I’ve always been a very independent person and the fact that I couldn’t do anything or go anywhere made me feel frustrated most of the time.

My boyfriend Felipe, a communications professional and music producer, has been the greatest companion, helping me thrive and heal with his patience and love, and for that I am truly grateful. We share a passion for music and going to concerts, but from the time of my hearing loss I avoid loud places and crowds in general. I know music to him means as much as art to me, so I now wear custom musician’s earplugs. I am also investigating a hearing aid for my right ear, which my audiologist recommended after a recent tinnitus assessment to manage my tinnitus and sound sensitivity. Vestibular rehab therapy helped me regain my balance, as I had difficulty walking or even just standing still.

And of course my art has been my most powerful coping mechanism. While I am in the process of creating, I can focus better and forget about my symptoms. Painting makes me ignore my tinnitus even for a short period of time.

This experience has given me the opportunity to create awareness about invisible conditions. It is a fuel that continues to ignite my passion for the arts and for helping others. It has given me a sense of purpose—I truly feel the need to wake up and create something beautiful to deliver a powerful message of positivism in spite of my symptoms.

In “The Colors of Sound” painting collection, I am trying to capture emotions and moods in sound. Using his recording equipment, Felipe showed me the range of frequencies that I was not able to hear anymore. It was a bizarre experience to be able to see the sound waves and frequencies that I could no longer hear. These ink paintings replicate the energy and movement of what was now missing.

Behind every invisible illness there are wonderful individuals with the will to thrive and heal. Helping others has been incredibly therapeutic for me, and I gained so much support from people, too. I want to create a space for dialogue so people can be open about their conditions and find treatments and relief and know that they are not alone in this journey.

Nicolle Cure is an artist based in Miami. “The Colors of Sound” appeared at Art Basel in Miami Beach (December 2017–February 2018). Read an expanded version of this post and see more photos of her art in her Winter 2019 cover story of Hearing Health magazine.


Pintando para una Cura

Por Nicolle Cure

Crédito: Lia Selfridge

Mi arte es el combustible que enciende mi pasión por ayudar a los demás. Utilizo mi arte como una herramienta para crear y poder apoyar las causas en las que creo. A lo largo de mi vida he creado varias colecciones, en su mayoría biográficas. Hasta la fecha, he tenido la suerte de contar con la oportunidad de colaborar en campañas de bienestar animal, así como en iniciativas de investigación en educación y salud. Ahora estoy, orgullosamente, creando conciencia sobre una causa en particular que es lo más querido en mi corazón: la pérdida de audición y los trastornos vestibulares (relacionados con el equilibrio)-después de experimentar estas condiciones yo misma.

El 4 de agosto del 2017 me desperté y noté que el lado derecho de mi cabeza estaba entumecido. Sentí una fuerte presión en mi oído derecho y no podía escuchar nada debido a que mi oído lo sentía bloqueado y lleno. Fue realmente aterrador y muy repentino.

Desde ese día he estado entrando y saliendo del hospital tratando de descifrar qué anda mal en mí y cómo curarlo. Mi primera cita con el audiólogo mostró una pérdida auditiva profunda en mi oído derecho, y después de inyectarme esteroides en el oído medio durante dos meses, pude recuperar la capacidad de escuchar las frecuencias bajas. Sin embargo, las frecuencias altas solo mejoraron al nivel de severo (de haber estado en el nivel profundo), y es por eso que ahora sufro de tinnitus y soy extremadamente sensible a los sonidos ambientales.

Mi pérdida de audición fue solo el comienzo. Durante los primeros meses también sufrí de VPPB (vértigo posicional paroxístico benigno), episodios de vértigo debilitantes, migrañas crónicas, náuseas constantes y mareos. Mi equilibrio estaba completamente perdido y me balanceaba hacia la derecha al caminar. Me sentía como si estuviera caminando sobre arenas movedizas. Otro síntoma que persistió durante meses fue la fatiga crónica, hasta el punto de que no podía levantarme de la cama ciertos días. Mi cuerpo lo sentía pesado, como si tuviera una losa de concreto encima mío.

Nicolle pintando en su estudio. Crédito: Lia Selfridge

Estas "condiciones invisibles" pueden afectar realmente a los pacientes a nivel emocional. Estaba completamente aislada del mundo, no quería ver a nadie y evitaba las llamadas telefónicas y salir fuera. Siempre he sido una persona muy independiente y el hecho de no poder hacer nada ni ir a ningún lado me hacía sentir frustrada la mayor parte del tiempo.

Mi novio Felipe, un profesional de las comunicaciones y productor musical, ha sido el mejor compañero, ayudándome a prosperar y sanar con su paciencia y amor, y por eso estoy realmente agradecida. Compartimos la pasión por la música y por ir a conciertos, pero desde el momento de mi pérdida auditiva evito los lugares ruidosos y las multitudes en general. Sé que la música para él significa tanto como el arte para mí, así que ahora uso tapones de oídos para músico, personalizados. También estoy investigando sobre un audífono para mi oído derecho, que mi audiólogo me recomendó después de una evaluación reciente del tinnitus, con el fin de controlar eso y mi sensibilidad al sonido. La terapia de rehabilitación vestibular me ayudó a recuperar el equilibrio, pues tenía dificultades para caminar o incluso para quedarme quieta.

Y por supuesto, mi arte ha sido mi más poderoso mecanismo de afrontamiento. Mientras estoy en el proceso de crear, puedo concentrarme mejor y olvidarme de mis síntomas. Pintar me hace ignorar mi tinnitus, incluso por un corto período de tiempo.

Esta experiencia me ha dado la oportunidad de crear conciencia sobre las condiciones invisibles. Es un combustible que sigue encendiendo mi pasión por las artes y por ayudar a los demás. Me ha dado un sentido de propósito: realmente siento la necesidad de despertar y crear algo bonito para transmitir un poderoso mensaje de positivismo, a pesar de mis síntomas.

En la colección de pinturas "The Colors of Sound” (“Los Colores del Sonido"), estoy tratando de capturar emociones y estados de ánimo en el sonido. Usando su equipo de grabación, Felipe me mostró el rango de frecuencias que yo ya no podía escuchar. Fue una experiencia extraña poder ver las ondas sonoras y las frecuencias que ya no escuchaba. Estas pinturas en tinta, replican la energía y el movimiento de lo que ahora estaba faltando.

Detrás de cada enfermedad invisible hay individuos maravillosos con la voluntad de prosperar y sanar. Ayudar a los demás ha sido increíblemente terapéutico para mí, y también obtuve mucho apoyo de la gente. Quiero crear un espacio de diálogo para que las personas puedan hablar abiertamente sobre sus condiciones, encontrar tratamientos y alivio, y saber que no están solas en este viaje.

Nicolle Cure es una artista radicada en Miami. "The Colors of Sound" apareció en Art Basel en Miami Beach (diciembre del 2017-febrero del 2018). Lea una versión ampliada de este artículo y vea más fotos de su arte, en la historia que corresponde a la portada de la revista Hearing Health de Invierno del 2019.

Traducción al español realizada por Julio Flores-Alberca, enero 2025. Sepa más aquí.

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The Miracle of the Cochlear Implant

By Barbara Sinclair

Barbara and her husband, Charles, who also has a hearing loss, in 2004.

Barbara and her husband, Charles, who also has a hearing loss, in 2004.

My mother didn’t realize I couldn’t hear until one afternoon when I was about 3 years old. I was happily playing on the floor with my younger brother. Suddenly I glanced up and saw Tex looking at Mother, who had clapped her hands. Not hearing any noise, I didn’t respond. Frantic with worry, Mother called Daddy telling him I couldn’t hear. She then took me to the doctor. No wonder I was slow in talking! Sound meant nothing to me. I didn’t know that I needed to talk to express feelings.

A teacher trained at St. Louis’s Central Institute for the Deaf taught me how to speak and read lips at home in Cleveland. I never heard a sound until I got my first hearing aid around age 9. The earliest audiometric evaluation I still have is from 1984, when I was 55, and it showed a profound hearing loss in my right ear. My left ear was even worse, termed “dead.” With training in speaking and lip-reading (speech-reading), I stayed in a mainstream school with the help of a hearing aid, although I really depended on lip-reading to get by. The hearing aid gave me a sense of being able to communicate, but it didn’t help much when it came to understanding speech.

I imagine anyone born with a hearing loss doesn’t always understand why they can’t hear. Many times I had wondered this myself. My doctors are also unaware of the cause. I speak a little differently, with a metallic sound and slight accent, sometimes accenting the wrong spots as I speak. However, this did not impede school or, later, work. After I graduated from Arizona State University, I held jobs in bookkeeping, the library, and human resources.

Sounds such as shouting, banging, ringing, and clanging all sound the same to me. What does a ticking clock sound like? Tap-tap, or click-click? Or running water? To me, these sound the same. I can’t hear the wind rattling the window. I feel it. I can’t hear the fury of a rainstorm. I feel it.

It’s hard for me to detect changes in speech tones or pitch, or to tell a low voice from a higher one. I read that a child’s laughter is like the delightful rippling of a water stream. I can’t identify that sound. But even though I can’t enjoy music or follow group conversations, there are some advantages to not hearing—I sleep without any interfering noises.

In 2001, our audiologist mentioned cochlear implants to my husband Charles, then age 72, who also has a hearing loss as well as being blind from retinitis pigmentosa. I researched cochlear implants and found this description from ABC News. It dates from 2001 but is still accurate today: “For those with normal hearing, sound enters the ear, triggering hair cells in the cochlea, a spiral tube filled with fluid. Those excited hair cells send information to the hearing nerve, which sends signals to the brain, allowing us to hear.

“But, if deaf people have damaged hair cells in their cochlea, an implant can also do the same work. With an implant, sound is picked up by a tiny microphone connected by a cord to a small box outside the ear. The box turns sound into a signal—transmitting it through the skin, straight into the skull. Electronics in the skull send the signals straight to the hearing nerve, bypassing the cochlear hair cells that don’t work.”

We went to see Wesley Krueger, M.D., an otolaryngologist in San Antonio. After a series of tests, Dr. Krueger told Charles that his hearing wasn’t actually severe enough to be a candidate for an implant. He was stunned for a minute, and then asked the doctor if there was a possibility for me to get an implant. Then it was my turn to be stunned.

Weeks later, following my own series of tests, Dr. Krueger came into the room, grinning, and announced, “You are a candidate for a cochlear implant!” I was speechless as he showed me the components of “the bionic ear”: the external hearing aid-like processor and transmitter; the receiver under the skin that connects to electrodes; the magnet that holds the implant in place on the skull.

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I had the surgery a month later, when I was 72 years old. A week after the bandage from my right ear was removed, I felt dizzy, but there was almost no pain at all. I then realized that the implant made me unable to hear with my hearing aid. Whatever hearing I had was gone.

For 30 days I agonized whether I’d be able to hear. The incision behind the ear must heal for that period before the bionic ear can be activated. Then, finally, activation day came—and was successful! There were beeps and squawks, but I could hear! Relief enveloped me as I progressed through the programming of the device. Sounds were distorted and muddled, but they were all new to me.

It has been 17 years since the implant. My device has been reprogrammed again and again until clarity reached its peak. I still don’t understand speech perfectly, but I do hear sounds I had not heard before: a ticking clock, running water, a humming car motor—and yes, the laughter of our four grandchildren.

Barbara Sinclar lives in Texas. She is a Faces of Hearing Loss participant

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My Magic Ear Kid

By Joey Lynn Resciniti

Julia was a full-term baby born exactly one week before her due date. She was healthy and perfect. She passed her newborn hearing screening.

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The hospital bassinet had a cabinet underneath where the diapers were stored. If I wasn’t very careful with the doors, they would slam loudly. Julia would startle and cry.

At least she can hear, I thought. This would prove ironic to me when Julia showed signs of having problems hearing. When Julia was 15 months old, I became concerned with her speech—or its lack. She’d babbled a little bit as an infant and then didn’t say much until at a year or so when she said hi, once.

No one wanted to admit there was a problem. My husband was even a little defensive about the subject. Grandparents chimed in that she was just a “late talker.” When I mentioned my concerns to the pediatrician, he recommended the state’s early intervention program, which led to our qualifying for twice-weekly speech language pathologist visits.

All this time, no one suspected Julia wasn’t hearing. With the specialist’s help, small gains were made in her speech. She developed a vocabulary of a few dozen words but never progressed to speaking two-word sentences or multisyllabic words.

So by the time we made it to the audiologist over a year later, when she was nearly 3, I had come to terms with Julia having some level of hearing loss. I knew when she turned her back to me, she wouldn’t respond if I called, and that was a big sign to me.

A Series of Tests

Sitting on my lap in the soundproof booth, Julia turned toward the speaker that was making a loud sound. But as the sounds got quieter, I got a heavy feeling in my stomach. She stopped turning toward the speaker. Finally the audiologist leaned into the microphone and told me she was coming over to our room. I willed myself not to cry as she said she’d found a moderate hearing loss in both ears.

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The audiologist next used little headphones to transmit sound directly to Julia’s auditory nerve. The results showed Julia’s hearing loss is sensorineural, a nerve problem, and not a mechanical problem like a tube that is too small in the ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like Julia did, and then find something later. The audiologist reassured me that we’d found it sooner rather than later, and that intense speech therapy would catch her up.

The next few months were tough. We scheduled an auditory brainstem response (ABR) test. For this test, the audiologist sedates the child and plays a series of clicks while measuring brain activity. This test is often done for young children to confirm their hearing loss before they’re fitted for hearing aids.

Our family was not ready to accept the first diagnosis and kept questioning the results. But I was with Julia in the booth, and knew it was correct. So when the ABR confirmed the hearing loss, I set to work managing the appointments and paperwork that would eventually help my daughter speak and thrive.

The first thing the audiologist showed us after the ABR testing was the “speech banana.” This was a confusing bit of information at first—banana? Speech? The speech banana is a visual aid for a very quick introduction to hearing loss and the varying levels of severity.

Normal hearing is in the 0 to 20 decibel (dB) range at the top of the banana. All speech sounds (vowels as well as consonants and consonant pairs) are above where Julia can hear with her 55 dB loss. Theoretically, without hearing aids she can’t hear any of those sounds.

Things louder than 55 dB, like a dog barking or a piano, would be accessible for her without hearing aids. But the tricky part is that it isn’t so cut and dry. Julia wasn’t unable to hear all language, and she also wasn’t always able to hear dogs barking.

Instant Change

We ordered hearing aids and earmolds. The audiologist showed us how to insert the tiny size 13 battery and talked to us about school accommodations and speech therapy as she programmed the little hearing aids for Julia’s specific hearing loss.

I’d thought about the moment she’d first hear with her new hearing aids. It was going to be the first time she’d hear my voice. Maybe the first time ever. I wanted to say, “I love you.” I wanted to say something nice, something comforting.

The audiologist worked the molds into her ears and clicked the battery doors shut. Julia’s eyes opened wide and her hands clenched on the arms of her chair. She could hear—and she was terrified!

“These are your new magic ears,” the audiologist said.

I didn’t say anything nice or comforting. I couldn’t help myself, I started to laugh! She looked so adorable, like she was on a roller coaster rather than an office chair. I forgot all about making a grand first speech and instead just beamed at her. Julia’s head swiveled to the ceiling. I noticed an obnoxiously loud fan for the first time.

On the way home, Julia tried to repeat just about everything we said. She could hear above the banana, all the vowel and consonant sounds. She began mimicking speech immediately. Every noisy thing that I had never taken the time to notice before was new and interesting.

We were warned that it might be difficult to get Julia to wear her new magic ears. The audiologist told us to be very firm so she wore the devices during all waking hours. If she tried to take them out, back in they went.

Eventually, at age 5, Julia learned to insert her hearing aids herself, with the promise of a sleepover once she could show responsibility. She began to take ownership of the aids, poring over earmold colors and designs (striped, swirled, polka-dotted) with the practiced eye of a stylish tween (she wasn’t yet 8). She became a connoisseur of the hand-shaped earmold (great) vs. one that is made through an automated process (not so great).

Responsibility Shifts

As time goes by, those early years begin to fall into their proper perspective. I used to think it would mean something to me if Julia could someday tell me that she heard me when she was a toddler. Time and distance have shown that she doesn’t remember much of anything from her prelingual years. Her memories start when she was about 4. Everything prior to that comes from pictures and videos.

Some of the videos, like one when she is about 2 showing her fascination with lightning bugs, are painful for me to watch. In the video, you can hear me prompting Julia to say the word “bug” over and over, and watching it now I see plainly that she is confused and cannot hear us saying the word.

I wish I’d realized back then that she needed help. I wish I hadn’t spent a whole year frustrating myself and my baby. If I had to do it again, I would tell myself to get her hearing tested. And also that she was going to be okay and that in three short years she’d be saying so much more than “bug.”  

Life with a 13-year-old hearing aid user is much easier. Julia is an independent seventh grader who gets straight As. We have as a family weathered ear infections with the potential to wreak havoc on a spelling test, late-night searches for a hearing aid battery among tangled twin sheets, and hearing aids that can’t be worn in the pool.

Now there are whole chunks of time when I don’t think about her ears, a blessing made possible by experience. We agonized when Julia’s hearing ability dropped another 15 dB to 70 dB, putting her in the severe category, and feared her hearing would progress even more, but it did not.

At the very first diagnosis, the ENT (ear, nose, and throat specialist, or otolaryngologist) assumed Julia’s loss is genetic, but the markers haven’t been discovered yet. The overwhelming majority of children with hearing loss—more than 90 percent—have typical hearing parents. We just don’t know.

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Years later Julia’s audiologist explained the drop: “Sometimes with a change in a child’s ear canal size, it may seem as if there is a 10 to 15 dB change in hearing across the frequency range. As the ear grows, a little more sound pressure may be needed to detect sound. This will result in what looks like a change in hearing but may just be growth of the ear canal.” This makes sense. After eight years of steady audiograms and this explanation, I am finally able to let go of those lost decibels and my fear of losing more.

Every now and then there’s a head cold, dead battery, or damaged bit of ear tubing, and I am once again that younger mother, riddled with anxiety about taking care of Julia’s hearing. But the shift in responsibility has become hers. Julia is the one taking the lead on troubleshooting her technology at home, school, the pool, wherever she goes. At 13, she is the one always needing to think about her ears. Perhaps that’s what we’ve been working toward all along.

This article originally appeared on the cover of the Summer '18 issue of Hearing Health magazine with a supporting story from Julia Resciniti  

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Challenges: A Sibling’s Perspective

By Joe Mussomeli

Everyone has challenges in their life; they can be small or big, but they’re still challenges. My brother, Alex, was born with severe hearing loss—the first in my family to have the honor.

Alex’s diagnosis marked the start of very stressful period for our family. It took some time for my mother to process his hearing loss, but both of my parents quickly recognized the importance of helping Alex get access to sound as soon as possible. They equipped Alex with hearing aids before three months old and our journey began.

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I don’t remember too much of the details, as I was only two years old at the time, but I was told that my parents spent many nights with Alex, practicing the sounds of letters, and making sure he could distinguish and pronounce each of them correctly.

What I do remember is initially feeling left out as a little kid. At first, all of my parents’ time was occupied by Alex. At 15 years old, this is understandable to me now, but as a little kid it wasn’t. My parents picked up on my feelings and began to make sure I wasn’t left out. They did their best to make sure I was involved and helping Alex. They taught me how to practice sounds with Alex, how to change his hearing aid batteries, and most importantly, how to be there for him when he needed me most.

Today, whenever I think of my brother Alex, I rarely think about his hearing loss. I almost always think of him as just Alex—not Alex with hearing loss or anything like that. I’ve almost always treated him the way any other older brother would treat their younger brother. We roughhouse, tease each other, laugh together (mostly at each other), and most importantly, we care for each other.

Alex has been in my life so much that by now I barely notice his cochlear implant on his right ear, or his hearing aid on his left. To me, they’re just ears, just like Alex is just Alex.

But there are certain times when his hearing loss is very evident to me, like when he takes off his hearing aid and implant and can’t hear my mom call him for dinner or answer a question I might ask him.  

These moments by now are part of our daily routine. They’re small and I don’t think about them often, but when they happen, they remind me how lucky I am. How I’m able to hear our mom call us for dinner without devices. How I can tell my dad I love him back when he says it, without taking the time to put on a hearing aid or implant. Thinking about this doesn’t make me pity Alex, it makes me admire him. I admire his strength and I admire how he doesn’t let hearing loss bring him down.

Alex’s hearing loss started out as a struggle, but it wound up bringing my brother and me closer together. I wouldn’t be as close with Alex as I am today if I never helped him overcome the challenges he faced with hearing loss. Challenges are tough and hard to deal with at times, but overcoming those challenges are even harder. If someone can overcome the challenges that life throws at them, then they can do anything.

Joe Mussomeli is an upcoming 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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Hearing Loss Film “Hearing Hope” Captures Personal Strength, Scientific Vision

Hearing Health Foundation (HHF) has created a new short film, “Hearing Hope,” to expand awareness of hearing health through the voices of those who benefit from and those who carry out the foundation’s life-changing work.

"It took me longer to talk than most kids. Because I couldn't understand what they were saying so I couldn't copy it," explains Emmy, 7.

"It took me longer to talk than most kids. Because I couldn't understand what they were saying so I couldn't copy it," explains Emmy, 7.

The third most prevalent chronic physical condition in the U.S., hearing loss can affect anyone—from first-grader Emmy to retired U.S. Army Colonel John—but its reach is often underestimated. “It’s one of the most common sensory deficits in humans,” explains cochlear implant surgeon Dr. Anil Lalwani. “I think we have to go from it being hidden to being visible.”

Both a hearing aid user and cochlear implant recipient, seventh-grader Alex is doing his part to make hearing loss less hidden. Smiling, he says he wants people to know that hearing with his devices makes him happy. John wishes to be an advocate for veterans and all who live with hearing loss and tinnitus.

When she received her hearing loss diagnosis at 17, NASA engineer Renee never thought she'd be living her dream.

When she received her hearing loss diagnosis at 17, NASA engineer Renee never thought she'd be living her dream.

The film also highlights resilience in response to the challenges associated with hearing conditions. Video participant Renee saw her dream of becoming an astronaut halted at 17 when her hearing loss was detected. Now she helps send people to space as an engineer at NASA.

Sophia describes the “low, low rock bottom” she hit when she was diagnosed with Usher Syndrome, the leading cause of deafblindness. Yet she feels special knowing her disability shapes her and sets her apart.

Jason recounts having no resources for hearing loss in children when his son, Ethan, failed his newborn hearing screening. Today he’s grateful for Ethan’s aptitude for language, made possible through his early hearing loss intervention.

With the support of HHF, more progress is made each year. “I’m glad that the doctors are trying to figure out how fish and birds can restore their hearing,” says Emmy.

For the past 60 years, HHF has funded promising hearing science and in 2011 established the Hearing Restoration Project (HRP), an international consortium dedicated to finding biological cures for hearing loss using fish, bird, and mouse models to replicate the phenomenon of hearing loss reversal in humans.

“If [the HRP] can achieve that goal of hearing restoration...that would be a marvelous thing for hearing loss,” reiterates Dr. Robert Dobie.

Through “Hearing Hope,” HHF would like to share its mission and message of hope to as many individuals as possible and reassure those with hearing loss and their loved ones they are not alone. As an organization that channels all efforts into research and education, HHF would greatly appreciate any assistance or suggestions to increase visibility of the film.

Watch the full film at www.hhf.org/video. Closed captioning is available.

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Advancing Accessibility in the Audiology Profession

By Lauren McGrath

Born with a profound sensorineural hearing loss, Jessica Hoffman, Au.D., CCC-A, never believed she could become an audiologist. In fact, she didn’t consider the profession until her final year as a biopsychology undergraduate at Tufts University.

By then, Dr. Hoffman was the recipient of successful hearing loss intervention and treatment for two decades. Diagnosed at 13 months, she was fitted with hearing aids by age two, practiced speech and hearing at the New York League for the Hard of Hearing (today the Center for Hearing and Communication) until five, and learned American Sign Language (ASL) at 10. She pursued a mainstream education since preschool with daily visits from a teacher of the deaf. Dr. Hoffman received cochlear implants at ages 14 and 24, respectively and, in college and graduate school, enjoyed a variety of classroom accommodations including ASL interpreters, CART, C-Print, notetakers, and FM systems.

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After Tufts, Dr. Hoffman worked as a lab technician at Massachusetts Eye and Ear as her interests in studying hearing began to grow. But she doubted her abilities to perform key tasks in audiology, like speech perception tests and listening checks with patients. After speaking with others in the field with hearing loss, she became less apprehensive. Engaging with mentors like Samuel Atcherson, Ph.D., and Suzanne Yoder, Au.D., who have greatly advanced opportunities for individuals with hearing loss in audiology, further cemented Dr. Hoffman’s self-confidence. In 2010, she completed her Doctor of Audiology from Northwestern University.

Today, Dr. Hoffman is happy to work with both children and adults at the ENT Faculty Practice/Westchester Cochlear Implant Program in Hawthorne, NY. She takes pride in helping her patients realize that they are not alone with hearing loss and that technology, like her own cochlear implants, can provide immense benefits to communication. Dr. Hoffman is motivated to help her patients understand that hearing loss does not define who one is and can be viewed as a gain rather than as a limitation.

Dr. Hoffman’s career is not exempt from challenges. Fortunate to receive accommodations as a child and young adult, she is disappointed by the tools that are missing in a field that serves those with hearing loss. Though she credits her own workplace as being very understanding, Dr. Hoffman points out the difficulties she experiences during team meetings and conversations with patients who speak English as a second language. She is grateful to have considerate colleagues who will repeat themselves as needed or offer to facilitate verbal communication with non-native English-speaking patients.

At audiology conferences, however, necessities like CART, FM systems, and/or interpreters are often lacking for professionals with hearing loss. Dr. Hoffman and others with hearing loss in the audiology field have petitioned to encourage accessibility at such events. She has had to take on the responsibility of finding CART vendors for conference organizers to ensure her own optimal listening experience. She reports being brushed off by meeting leaders and a sense of doubt in her abilities and those of her colleagues with hearing loss.

Dr. Hoffman also wishes to see greater accessibility in audiology offices nationwide, including recorded speech perception materials, captioning for videos or TV shows in the waiting room, and email exchanges with patients, rather than phone calls. She’d like all audiology staff to be well-versed in communicating with people with hearing loss and to have a strong understanding of the Americans with Disabilities Act (ADA) as it pertains to hearing loss. Dr. Hoffman also thinks facilities would benefit from hiring ASL interpreters or Cued Speech transliterators as needed. Her ideas would help professionals like her and patients alike.

Accommodations for people with hearing loss and other disabilities in academics, public sectors, and the workforce—audiology included—should be provided without question, says Dr. Hoffman, who has had the burden of reversing many people’s misconceptions about her capability to thrive independently in her career. “The self-advocacy never ends, but it has made me stronger and more confident in my own abilities as a deaf person. I am proud to have a hearing loss because it has shaped me into the person I am today.”

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

 
 
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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.

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

 
 
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