family

Family Ties

By Ava Finnerty

Ava’s mother, Sonia, had a hearing loss but never disclosed it to anyone.

Ava’s mother, Sonia, had a hearing loss but never disclosed it to anyone.

My mother Sonia, born and raised in Wales, was the first person I knew with a hearing loss. She concealed it for many years. In my adolescence and young adulthood, I came to learn of her hearing loss, my grandmother’s, and, eventually, my own.

During World War II, my mother served in the Women’s Air Corps in Britain, where it was her duty to (wo)man the barrage balloons on the White Cliffs of Dover. It was there she met and married my father, John Jessen, a U.S. Army Sergeant preparing for D-Day. During the war she gave birth to my oldest brother, and then they both emigrated to the U.S. in 1946 to reunite with my father.

My parents moved to a veterans housing project in Bayonne, New Jersey, to raise our family. My mother was a very private person who largely refrained from sharing her medical issues with my two brothers, my sister, and me. I have a vague memory of her having some kind of ear surgery in the early 1950s, when I was 5 or 6 years old, but I did not receive an explanation. 

Every time we went swimming, my mother plugged her left ear with a large wad of cotton and covered her head with a bathing cap. She told us she had a “hole” in her ear that needed to be protected from water. Incidentally, my mother helped tend bar at my father’s parents’ bar, The Viking, before becoming pregnant with me, but I later learned for certain her hearing loss was not caused by noise.

A Family Inheritance

A strict parent, my mother believed “children should be seen and not heard,” so I thought she often remained silent in response to my questions on purpose, and not because she literally could not hear me. It was only when I was a teenager that my mother told me the truth about her hearing. She had a severe hearing loss, but she did not treat it. Her small group of friends likely provided some support for her untreated condition.

My mother inherited her hearing loss from her mother, Bessie, who was profoundly deaf. Grannie still lived in the small Welsh village of Pontypool, where I visited her occasionally, first when I was 20, before my own hearing loss had been identified.

Shown with extended family, Ava (second from right) traces her roots to Wales through her mother Sonia.

Shown with extended family, Ava (second from right) traces her roots to Wales through her mother Sonia.

Grannie was a voracious writer—I suppose by necessity, because she did not wear hearing aids. She was keenly in touch with her surroundings, able to sense vibrations and read lips adeptly. Relying heavily on her vision, she was more cognizant of others’ facial expressions and body language than most with typical hearing. 

At my wedding Grannie impressed me with her grace as a dancer, using the feelings of the bass and drums to move rhythmically. She was a strong and confident woman who’d grown resilient living as a mother and grandmother with a hearing loss during World War II. 

A Gradual Process

My own difficulty hearing came on so gradually it was hard to notice. But I do remember vividly the day I realized the difference between my left and right ears. I was then a parent of three young children, living in Bayonne in a two-family house with my mother. I was cooking while cradling the phone between my right shoulder and right ear. 

At one point in the conversation I switched the phone to my left ear and realized I could not hear what was being said. Despite this realization, I compensated for some time, relying on my “good” ear for conversation. It is truly amazing what a person can get accustomed to not having!

Around this time I could tell that my hearing loss was affecting my work. I was well into my career as a high school English teacher. At first, I attributed my inability to understand my students to their mumbling or mouth-covering. But, as the problem worsened, I knew it was me, not them. Only later did I learn my colleagues thought I was aloof because I would not acknowledge their greetings!

I developed a meaningful relationship with my mother, incidentally, during the onset of my own hearing loss. She and I cared for my father, helping him with home kidney dialysis every other day, and formed a very close bond. After his death, we spent many hours talking together, and I told her about the difficulty I had hearing my students.

Even though I knew of my mother and my grandmother’s hearing loss, I had concluded I had a buildup of earwax in my left ear. My husband Joseph, who was the chief echocardiography technologist for New York Hospital, was able to refer me to an audiologist at New York Weill Cornell Hospital. 

There I learned I had almost no earwax buildup—but I did have a significant hearing loss. I was diagnosed with a 78 percent loss in my left ear and a loss of close to 30 percent in my right. 

Successful Surgery

My left ear’s hearing loss was due to otosclerosis, an abnormal growth of bone in the middle ear. Otosclerosis is commonly thought to be inherited but its causes remain unclear. Scientists cite measles infections, stress fractures to tissue surrounding the inner ear, and immune disorders as possible causes. My doctor noted my otosclerosis was accelerated by my pregnancies, and research has since suggested this is possible.

I had a successful stapedectomy on my left ear, a surgical procedure that replaces the stapes bone with a prosthetic device so the bones in the middle ear can again vibrate in response to
sound and hearing is restored. The procedure was minimally uncomfortable but did cause severe vertigo, which I was able to control with medication. 

In the late 1980s, my mother finally chose to pursue hearing aids but wore them rarely because they emitted a very high-pitched sound. Later in her life, she stopped wearing them completely. Since we shared the two-family home, my family and I always knew what Grandma was playing on her television or radio upstairs at maximum volume. And we lost count of the number of times she shouted “whadjasay?!” to my father.

Mom became increasingly withdrawn. She never wanted to go out on dinner dates or socialize with friends. Only in recent years, after her passing, have I come to understand this preference for isolation.

Over the decades that followed, the hearing in my right ear slowly diminished and I found it increasingly difficult to manage at social events. I wanted to undergo a second stapedectomy, but the audiologist told me this wasn’t recommended. 

I was fitted for hearing aids instead. The audiogram showed a moderate hearing loss in my left ear and a severe loss in my right with difficulty hearing low frequencies in both. No wonder I could not hear the deep-voiced young men speaking in class!

The audiologist asked if I wanted access to sounds at 180 or 360 degrees. I said 360 because I wanted to hear what my students were saying behind my back. I always told my students that although I wore hearing aids, they needed to speak clearly and be aware that I sometimes surprised myself by what I was able to hear. I specifically told my students to never say “never mind” if I asked them to repeat themselves or speak up, but to repeat and rephrase what they said.

Vigilant About Hearing Well

Ava (middle) and her two daughters.

Ava (middle) and her two daughters.

This was in 2011, when I was 62 years old, and I’ve vigilantly worn my hearing aids since. The devices have, for certain, added to my quality of life. They are not perfect, but I consider them an absolute necessity if I want to hear my grandchildren and other family members. I am a music lover, play-goer, and movie fan. And had I not begun wearing them, I surely would have retired from my teaching career earlier than I wanted to. 

I supplement my hearing aids with simple requests and tools. I have no problem telling someone, “I don’t hear as well as I would like to. Could you say that again?” I retired in 2014, after 42 years of teaching high school English, and then was elected to be a Bayonne Board of Education trustee in 2015. During our meetings I prefer to sit at or near the head of the table to read the lips of the person speaking. 

I use closed captions at home watching television. When I babysit, I often go to my grandchildren’s bedroom doors to check on them because I am not sure if they are crying. I love baby monitors that not only light up but also have video for me to easily check. 

Both my daughter and daughter-in-law are aware of the genetic predisposition for otosclerosis. In fact, my daughter thinks that her 16-year-old daughter may have some hearing loss. My advice to her was to pay attention—but also that there is a great distinction between “hearing” and “listening,” especially when it comes to adolescents! 

Ava Finnerty lives with her husband Joseph in New Jersey. A retired English teacher, she serves on the Bayonne Board of Education as a trustee. Their adult children are Kristen, also an English teacher; Jill,
a music teacher; and Sean, a U.S. Navy veteran who served in Iraq. This article originally appeared in the Summer 2019 issue of Hearing Health magazine. For references, see
hhf.org/summer2019-references.

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Comfortable

By Joe Mussomeli

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

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

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

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

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

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How to Create a Healthy Hearing Environment for Children

By Alyson McBryde

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“How many times do I have to repeat myself?” If you’re a parent or guardian, chances are you’ve said this to your child before. Indeed, a part of parenting is repeating yourself―but what if it becomes part of a bigger issue?

In 2015, the World Health Organization (WHO) estimated “1.1 billion teenagers and young adults are at risk of hearing loss due to the unsafe use of personal audio devices including smartphones, and exposure to damaging levels of sound in noisy entertainment venues such as nightclubs, bars, and sporting events.”

The WHO indicates “unsafe levels of sound can be, for example, exposure to in excess of 85 decibels (dB) for eight hours of 100 dB for 15 minutes.” Exposure to dangerously loud sounds could damage the sensitive structures of our inner ear and lead to permanent hearing loss. Here’s the thing about noise-induced hearing loss: it is 100% preventable.  

As a parent or guardian, you can implement fun and effective hearing loss prevention activities and strategies like these:

Lead a Learning Experience
Look for science videos and activities that demonstrate how sound, the ear, and hearing work. Great examples include Hearing Health Foundation (HHF)’s interactive, captioned video, Kids Health, and The Magic School Bus.

Watch Out for Noisy Toys
A study on sounds emitted by children’s toys found “the average sound levels of the various toys were 106.8 dB measured at a point nearest the sound source,” according to ASHA. Use a decibel-measuring app to check out your kids’ toys before they play.

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Limit Time with Electronics
NBC News reports: “Each new generation of teenagers has found a new technology to blast music – from the bulky headphones of the 1960s to the handheld Sony Walkmans of the 1980s. Today’s young people are listening longer, more than twice as long as previous generations.” Remember when our elders told us to “go outside and play”? Encourage your kids to do the same.

Turn Down the Volume
Enforce the 60-60 rule: Allow your child to listen at 60% volume for 60 minutes at a time. Look into apps that allow you to set parental controls on volume levels and encourage your kids to take a break from nonstop sound! 

Beware of Noise Levels at Live Events
Did you know a live ballgame can reach 120 decibels? Live sporting events can be extremely dangerous for little ears. The same goes for live music shows. Bring along a pair of foam or custom-made earplugs!

Keep Those Little Ears Warm
If you live in a place with cold winters, make sure you kids have earmuffs or hats that cover their ears. Cold air may affect hearing with exostosis, known as “surfer’s ear,” which happens when abnormal bone growths interfere with the auditory process.

Swim Safely
During the summer, while attending swim lessons, or on vacation, protect your kids’ ears with swim plugs. Swim plugs help to prevent swimmer’s ear, or otitis externa, caused by bacteria inside the ear canal, which can lead to trouble hearing.

Treat Ear Infections Immediately
Kids experience ear infections far more regularly than adults due to the size and positioning of their Eustachian tubes. Seeking immediate treatment from an ear-nose-throat (ENT) specialist for otitis media―ear infections―could help prevent hearing loss in kids.

Invest in Earplugs
Whether they are made of generic foam or are custom-molded to fit in their ears, earplugs are a great barrier between little ears and dangerous levels of sound. Carry a pair wherever you go―you never know when you may need them! 

Get Their Hearing Tested
Hearing health should be treated no differently than any other part of your kids’ overall health. In the same way your kids get a full physical and vision test annually, build a hearing test into the routine! Hearing tests keep track of your kids’ hearing abilities, and if anything changes, your hearing health professional can help find a solution.

Alyson McBryde leads the customer success team for HearStore.

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You Are the Reason

By Elizabeth Keithley, Ph.D.

Your partnership with Hearing Health Foundation (HHF) is fundamental to new treatments and cures for hearing and balance conditions.

I am so grateful you are part of our mission—which, as a hearing scientist, I have always embraced.

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Support from you creates new possibilities for people of all ages, including brothers Anthony, Andersen, and Ayden, all born with bilateral hearing loss.

The boys wear hearing aids and are happy, social, and active students in a mainstream school.

They’re fortunate to have a mother who sacrifices for their hearing health, including five-hour round trip drives to their audiologist.

I am pleased to have witnessed so much extraordinary work funded by HHF that will better the lives of so many people just like these boys.

And I know someday, hearing restoration— which already exists in birds, fish, and young mice — will be possible for millions of folks who have hearing loss.

Progress cannot happen without you.

Please, if you are able, give today to bring us closer to realizing that dream.

Your generosity is urgently needed to accelerate new treatments and cures. We appreciate your consideration to give to HHF’s life-changing work.

Thank you and happy holidays!

 
 
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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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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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Celebrate Founder’s Week Starting August 1

By Nadine Dehgan

This August marks the 100th birthday of Hearing Health Foundation (HHF)’s late founder, Collette Ramsey Baker. She formed our foundation 60 years ago in gratitude for surgery that restored her own hearing. Her legacy lives on as we continue to fund innovative hearing and balance science. HHF exists to better the lives of the millions who live with hearing and balance disorders, and we would like to acknowledge those who are most important to you.

June 1966: Collette Ramsey Baker (left) is presented with an award at the Rotary Club of New York.

June 1966: Collette Ramsey Baker (left) is presented with an award at the Rotary Club of New York.

To celebrate the spirit of Mrs. Baker’s birthday, HHF will dedicate a week to your loved ones and those connected to hearing loss. When you make a gift to HHF between August 1 and August 7 in honor of, or in memory of someone special, we will notify them (or their family) of your generosity and add their name to our “Honor Wall” page. As you share your names and stories, we will see the many faces of hearing loss.

Commemorate the most extraordinary people in your life by participating in Founder’s Week and dedicating a gift to hearing research in their honor.

As always, 100% of your gift will be invested in life-changing research and awareness programs, and you can choose where to direct your donation. Thank you for supporting our important work - we couldn’t do it without you!

Make your tribute gift at www.hhf.org/foundersweek beginning August 1, where you will have the opportunity to tell us who you are recognizing and why and to submit their photo.

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Giving Imagery to an Invisible Disability

By Lauren McGrath

Hearing loss is not readily visualized. Scientifically, hearing loss can be observed as hair cell damage in the cochlea in the inner ear. This representation is not only an abstract concept to most, but invisible in everyday interactions.

Priscila, a hard-of-hearing artist and mother of three living in California by way of Brazil, has a different idea about how to portray hearing loss.

Introduced to drawing and sculpture by her grandmother as a child, Priscila has always been an artist, but did not until very recently—well after she developed bilateral hearing loss—give herself permission to actualize her dreams of pursuing art professionally. Her hearing loss, for which she wears a bone-anchored hearing aid (BAHA), began more than two decades ago.

Artist Priscila Soares' Abutment painting is a self-portrait that prominently shows the screw she has on her head that connects to her bone-anchored hearing aid (BAHA).

Artist Priscila Soares' Abutment painting is a self-portrait that prominently shows the screw she has on her head that connects to her bone-anchored hearing aid (BAHA).

Cholesteatoma, a destructive skin growth that develops in the middle ear and typically requires removal, was the catalyst for Priscila’s hearing loss. She first received a cholesteatoma diagnosis for her right ear at 17, which she believes was the result of many ear infections as a younger child. A surgical problem rendered her profoundly deaf in her right ear following the procedure.

At 24, Priscila’s left ear showed the same condition. Though the surgery was successful, the cholesteatoma had already corroded all three bones in her middle ear, resulting in hearing loss.

Incidentally, Priscila's youngest son, Jason, 11, also has hearing loss—with no genetic connection to her own. Undaunted by his diagnosis of moderate to severe hearing loss at birth, Priscila was grateful that her own experiences would guide her care. When Jason was just a few months old, she enrolled him in a very supportive preschool for deaf and hard-of-hearing children where she worked as an aide for a time and became highly educated on pediatric hearing loss.

When he was 2 ½, Jason’s diagnosis was modified: he was profoundly deaf. Once believing her own hearing loss would be an advantage to her parenting, the drastic change left Priscila frightened. Together they’ve overcome this challenge and, today, Priscila is overjoyed that Jason, who hears with cochlear implants, is fully mainstreamed, attends school at grade level, and no longer needs the help of an interpreter or aide.

Two years ago, Priscila overcame a challenge of her own. Despite a happy family life, she felt a tremendous void. She knew that it was time to return to painting, drawing, and clay. Not only did Priscila resolve to create again, she vowed to empower people with hearing loss through art.

Priscila poses in front of one of her paintings, "Weigh," which represents the weight felt by hearing loss. Source:    My Luckyears   .

Priscila poses in front of one of her paintings, "Weigh," which represents the weight felt by hearing loss. Source: My Luckyears.

Priscila loves to portray the human figure and life’s journeys with tremendous emotion. She primarily uses acrylic paints, dry pastels, and a homemade clay that looks like porcelain. The work she says she’s most proud of is what she calls her Abutment paintinga self-portrait that prominently shows the screw she has on her head that connects to her BAHA. Creating this painting was freeing for Priscila because it allowed her to share such an intimate part of herself with others, something that very few people know about.

Priscila’s mission as an artist is to give imagery to an invisible disability. She seeks to show “that hearing loss doesn’t define or disempower who you are.” Instead, she says, “It gives you a unique way of experiencing the world that is yours only.”

Learn more about Priscila and view her artwork on her website, My Luckyears. Priscila is a participant in HHF's "Faces of Hearing Loss" campaign to raise awareness of hearing loss and related conditions. 

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Help Us Move Beyond Grateful

By Nadine Dehgan

Thank you for your partnership as we progress toward our dream of cures for hearing loss and tinnitus.

Our researchers are hard at work discovering how reptiles, birds, and fish are able to restore their hearing after being deafened so they can translate this knowledge into cures for mammals and humans. 

When better treatments and cures are discovered, I know Jamie—pictured below with her four children—will be incredibly grateful for the opportunity to have her hearing restored. We will all be grateful.

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Jamie's life changed one year ago when her daily activities were suddenly compromised. Words turned into mere muffled sounds—and then silence. She found herself increasingly dependent on lip-reading to avoid asking people to repeat themselves, a request that embarrassed her.

Her fears were confirmed when her doctor determined that Jamie, 32, has severe hearing loss in both of her ears. The doctor was astonished by the intensity of the decline in Jamie's hearing.

Jamie is fortunate to have a supportive and loving husband and family. But she lives in fear she may never be able to hear her beautiful children and other important sounds in her life.

Can you help bring us closer to better treatments and a cure for hearing loss for Jamie and 48 million other Americans with hearing loss?

Please, if you are able, give to HHF today. 100% of your generous gift will be directed to the area of your designation. 

Thank you and happy holidays!

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