Personal Stories

Inside My Head

By Bob Liff

I am certainly not the only person whose realization that I suffered from an increasingly severe hearing loss came upon me gradually. My difficulty became noticeable when I was working as a newspaper reporter in the late 1990s. I could manage okay on the phone but had trouble following conversations in person if there was any ambient noise. Crowd situations were unbearable.

I also suffered from periodic tinnitus, which of course is utterly frustrating, but still did not attach it to having a chronic hearing loss.

I withdrew from social situations. I started making jokes: My wife says it’s not that I can’t hear, but that I won’t listen. Because my hearing loss is asymmetrical—much worse in my right ear than my left—I was losing my echolocation. I could not tell where a sound was coming from, and would spin around to find the source.

Eventually, reality kicked in. I went for a hearing test about 12 years ago and was shocked at the degree of the loss in my right ear—more than 50 percent in the midrange frequencies, less so in other ranges—and a slight loss in the left. 

My ENT and audiologist suspected Ménière’s disease, but could not come to a conclusion, which illustrated for me how much research still needs to be done to fully understand hearing and balance issues. I was fitted with a hearing aid for my right ear. Because of the nature of my hearing loss, I could not use an in-ear aid and had to use one that went over my right ear with an external microphone.

Both ears continued to deteriorate, the right more than the left. I could hear sounds in my right ear, but could not make out words. As it was explained to me, my auditory nerve was working normally, but the other parts of the ear where sound travels before reaching the nerve, especially the hair cells inside the cochlea, were not.

Bob Liff Cochlear Implant.jpg

My audiologist finally said there was not much more he could do for my right ear and suggested a cochlear implant (CI) on that side. I met with Ana Kim, M.D., at Columbia Presbyterian in New York City where I live, who performed the surgery.

One of the absurdities of the health insurance industry became apparent to me when I chose a CI that would be paired with a hearing aid for my left ear. While the hearing aid alone was not covered by my insurance plan, the far more costly CI in combination with the hearing aid was covered because the two devices were synched. 

The surgery was more extensive than I expected. Dr. Kim opened up my skull behind my right ear and burrowed out a bed in the dura on my cranium to insert the implant, which was then wired through my cochlea. I maintained my wise-guy attitude about the situation, posting a picture of my bandaged head on Facebook, explaining they had opened up my head and found nothing.

I had to wait three weeks for the effects of the surgery to subside before my new audiologist, Megan Kuhlmey, Au.D., also at Columbia Presbyterian, hooked me up for the first time—and nothing happened.

I was not the first patient who expected instant magic. It took several months before hearing began to return to my right ear. Each hearing test showed progress, though I did not feel it. The hearing aid in my left ear allowed me to compensate for deficiencies in my right ear, but eventually I began making out words in my right ear as well.

That is when I discovered one of the ways I had previously been coping with my hearing loss. While having morning coffee with my wife, she would have me cover my left ear; I was hearing things with my right. When she casually covered her mouth, I could no longer make out what she was saying. In that instant, I realized I had been reading lips for years without even realizing it.

Two years after the surgery, the CI has not yet restored full hearing in my right ear, though it certainly has improved it, and I no longer have problems figuring out which direction a sound is coming from. With the type of implant I have, I cannot have an MRI, since the magnetic force could tilt the device inside my head, and I get conflicting advice on whether I can go through a metal detector. Since the technology is always improving, if you are a candidate for a CI, discuss with your doctor which one best suits your needs and lifestyle.

As an aging baby boomer who just turned 70, I find lots of company in the hearing loss crowd. It is hard to generalize how hearing loss affects people individually, but I am surprised that for many, vanity remains an issue. For me, the prospect of improved hearing outweighs any concern that signs of the vagaries of age are visibly hanging on my ear lobes. 

I do wish I had tackled this earlier, and had not dismissed comments by well-meaning people saying I was not hearing them properly. And since I have also had surgery in recent years on my eyes, nose, and throat, I realize I have kind of a bionic head anyway.

What is inside my head is another matter.     

Bob Liff is a public relations professional in New York City.

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A Wonderful Stroke of Luck

By Janet R. Douglas

My stroke eliminated the 20-year age difference between Bruce and me, making me older than him in some ways. I was supposed to be pushing him around in a wheelchair at this stage of our lives. He is, after all, 94 years old. 

We cope with dueling disabilities. As a result of his military service, Bruce is almost totally deaf and my voice, as a result of the stroke, is weak and quiet. This makes for some interesting miscommunication. At a distance, he cannot tell the difference between even a “yes” or a “no” so while we are grocery shopping I end up with miscellaneous unwanted drinks, snacks, and grocery items and am deprived of things I really need.  

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When we are in a public place and get separated, Bruce calls my name loudly, making me cringe. I respond as best I can, knowing that he will not hear me. He keeps on yelling my name until he sees me, by which time we have usually attracted a crowd of curious onlookers. 

“Why do you keep yelling my name when you know you can’t hear my response?” I ask.

“Because then you know where I am and can track me down,” he responds with a beatific smile.

Our interchanges are often hilarious. As we were getting ready to go away for a weekend recently, I asked, “Can you get my suitcase?”

“Put your foot up on the bed,” came the immediate order. 

“Why?” I asked, puzzled.  

“So I can tie your shoelace,” he grumbled. “You know I don’t like bending down.”

Bruce wants more than anything to be helpful but we sometimes struggle with the concept of what “help” means. My definition of help is that he does exactly what I ask him to do and only when I ask him. His definition of help is sometimes tinged with overtones of “father knows best,” such as when he assumes he knows what I need and refuses to listen to my request for something different, using the excuse that he can’t hear what I am saying. 

Bruce and I are, in many ways, a typical couple who have been married for 40 years, a mix of compassion born of passion, friendship, bickering, shared interests, patience and impatience, and great love. 

There is one big difference—with our daughter Sandy, whose marriage broke up shortly after her son was born, we are raising a young boy. Joey, tall for his age, with dark brown curls and shining blue-gray eyes, is a merry, loving presence in our lives. We are expected to be ready to read stories, play ball, play hide and seek, and engage in endless tickle-fests at any time. The regular presence of our grandson makes it hard to get hung up on either old age or disability because he has a zero-tolerance policy for either.

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I approached my stroke as an enemy to be fought and conquered. It did not work out that way. It took me many years to accept that I wasn’t going to achieve the 90 percent of prestroke function that I said I would settle for, much less the 100 percent that I really wanted, but what matters is that I became 100 percent of who I am now.

Janet R. Douglas lives in Illinois with her husband Bruce, who wrote our cover story in Fall 2018, at hhf.org/magazine. This is excerpted with permission from her book “A Wonderful Stroke of Luck: From Occupational Therapist to Patient and Beyond,” at amazon.com.

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Katelyn and Solenne

By Timothy Higdon

Bouchard Girls.jpeg

You know well what it means to live with hearing loss: It can be lonely, scary, or frustrating. It can make us struggle to access the things — and the people — we love the most.

I know these feelings, too. In the U.S. Army, I was exposed to equipment, demolitions and weaponry without wearing hearing protection, and today I live with a bilateral hearing loss.

I cannot thank our supporters enough for making critical hearing and balance research possible. Having only recently joined Hearing Health Foundation (HHF), I already this generosity and enthusiasm for better treatments and cures so inspirational.

Support from private individuals is especially critical given how government funding for hearing loss research is so low relative to its burden on Americans.

Sisters Katelyn, 12, and Solenne, 11, of Connecticut, are among the tens of millions of individuals who benefit from advances in hearing loss research. Both girls were born with severe to profound hearing loss but showed no benefit from hearing aids. They have both since received cochlear implants (CIs).

Their mother, Genevieve, is grateful that Katelyn and Solenne are able to attend a mainstream school and thrive. Katelyn plays lacrosse and violin, while Solenne plays basketball and sings in the school chorus. Both girls take sailing lessons in the summer.

But Genevieve and her husband, Brian, know well that more advancements in technology and medicine will benefit their daughters, other children, and adults. Because there are limitations to CIs and hearing aids, the long-term objective for HHF is to provide far better quality hearing discovered through research.

Please make a contribution today to bring us closer to permanent hearing loss cures. Your generosity can make possible more scientific discoveries we — our veterans, parents, our children, spouses, friends — urgently need. 


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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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Restoring Teachable Moments

By Neyeah Watson

Effective listening is fundamental to being a teacher. Terry Harris, who lives with a severe-profound sensorineural hearing loss, teaches special education in Glenview, IL. His life and profession changed dramatically when he experienced three months of total deafness — prompting him at age 40 to undergo cochlear implant (CI) surgery to restore his access to sound.  

Harris was diagnosed at age 4 with a profound hearing loss in his left ear and a severe-profound loss in his right. He suffered chronic ear infections and was believed to have contracted the mumps, and, at the time, his doctors believed this caused his hearing loss. Harris’s current ENT suspects the cause is genetic, as his great aunt was deaf and his son recently developed a mild hearing loss.

Terry Harris leads a presentation. Credit: Brian O'Mahoney, Pioneer Press

Terry Harris leads a presentation. Credit: Brian O'Mahoney, Pioneer Press

Despite his bilateral loss, Harrris was fitted with a hearing aid in his right ear only after his diagnosis. He attended an oral program for deaf and hard-of-hearing students until third grade before transitioning to mainstream education. In both schools, he used speech-language pathology and lipreading to supplement the amplification he received from his hearing aid. His individualized education plan (IEP) primarily focused on vocabulary development, speech-language development, developing compensatory skills, and utilizing accommodations. 

Though his IEP continued through his high school graduation, Harris struggled to follow noisy discussions in the classroom. Academics were challenging, but he received average marks or better thanks to his phenomenal teachers and hearing intererent (aide). Meanwhile, Harris developed a love for sports, which became more of a focus and priority for him in high school. 

Harris brought his passion for football and baseball with him to Elmhurst College in Elmhurst, IL, where he studied Special Education. Although Harris opted not to receive a 504 plan — an agenda to ensure a student with a disability has access to accommodations that will secure their success — his academic experience at Elmhurst was positive and accessible. He appreciated, for example, that he was able to take American Sign Language courses to fulfill his foreign language requirement. 

In 1999, Harris became a special education teacher, fulfilling a dream he’d had since eighth grade. Harris’s love for teaching derives from the support he received from his own educators. “I teach because of the teachers and coaches who influenced my childhood,” he explains. “I attribute my success to them. They never let me use my hearing loss as an excuse for failure or an excuse not to try something.”

Terry Harris writes on the whiteboard in social studies class. Credit: Brian O'Mahoney, Pioneer Press

Terry Harris writes on the whiteboard in social studies class. Credit: Brian O'Mahoney, Pioneer Press

Harris did not consider CIs until 2014, when he experienced sudden loss of the remaining hearing in his right ear. He lost his hearing completely. “I struggled knowing if I had missed any teachable moments as a result of not hearing everything,” Harris recalls. 

CI surgery had not been considered for Harris during his childhood, when the procedure was still viewed skeptically. But when he experienced total deafness, he viewed CIs as his only option. While aware of the intense aural rehabilitation that would follow, Harris was fully committed to the process of getting the hearing he needed and deserved.

Before the procedure, Harris taught for an entire month while completely deaf. He relied solely on lipreading and the assistance of a few teacher’s assistants. These three months served as a time for Harris to understand just how much CIs could better his quality of life. During this time he remained excited about restored access to sound. 

Harris took a four-month medical leave of absence for rehabilitation after the surgery. Although he did not want to be away from his students long, he was aware that the time was necessary in order to invest in developing to be the teacher he believed his students deserved. Now for the first time in his life, Harris is able to hear in the normal range, as well as localize sound.

Not getting the surgery sooner was Harris’s only regret. Now for the first time in his life, Harris is able to hear in the normal range, as well as localize sound.“I am much more confident in the classroom and other areas of the school building. The cafeteria, the auditorium, or even the gymnasium are no longer ‘problem’" areas for me.”  

Harris makes it a priority to incorporate his hearing loss story into his lessons, and begins each school year with a presentation about how CIs work. Given that Harris teaches children with special needs—including three students with hearing loss to date—he believes these lessons inspire self-determination, compensatory skills, and self-advocacy. He is proud to share his own experiences to let his students know they can achieve fulfillment living with a hearing loss or other perceived limitations.

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I Hear a Symphony: For U-M Violin Student, Hearing Loss is Not a Disability

Violin teacher Danielle Belen uses a lot of gestures and hand signals but not many words. Her student, Abigel Szilagyi, relies on vibrations, muscle memory and instincts.

Learning to play an instrument can be difficult for anyone, but Szilagyi must work through her own challenges: She was born with just 50% of her hearing.

When Belen, an associate professor of violin at the University of Michigan School of Music, Theatre & Dance, and Szilagyi, a violin soloist and chamber musician, started working together in California seven years ago, it took nearly two months before Belen learned her then-14-year-old student had only half of her hearing. And she didn’t notice herself—the musician’s mom broke the news about her daughter’s unique circumstance.

Credit: Szilagyi personal archive

Credit: Szilagyi personal archive

“Her mother asked me if I had noticed anything different about Abi,” Belen said. “I quickly answered, yes, she is very talented and I am totally drawn by her passion.”

The answer was not wrong, but incomplete.

“Her mom looked directly into my eyes and said, ‘Abi is partially deaf!'” Belen said.

Belen had never worked with a student who was hard-of-hearing, so it was difficult to imagine how this would work.

“But something immediately in her personality showed me that it would be possible,” she said. “I was quite impressed with her ability for her age.”

With passion and extra discipline, Szilagyi has never stopped playing the violin. In 2016, she was accepted to the U-M School of Music, Theatre & Dance and moved to Ann Arbor, where Belen has taught since 2014.

Szilagyi, who will be a junior at U-M this fall, said she had many instructors before Belen, but there was no connection.

Credit: Szilagyi personal archive

Credit: Szilagyi personal archive

“I wanted someone who believed in me and who saw my hearing problem not as an inability, but an ability,” she said. “I wanted someone who understood my hearing disability was as much a part of me as being a musician because I always wanted to connect these two parts of me.”

When Szilagyi was 4, doctors discovered she was born with a 50% sensorineural hearing loss in both ears. A couple of months later, she got her first set of hearing aids, and on the way home heard a “lovely and vibrant singing sound.”

“I then heard the birds chirping for the first time in my life,” Szilagyi said. “I was so drawn to how they could make such beautiful music. This sparked my desire to become a musician.

“It is amazing how your body can adapt. I am very observant. I learned lip reading, body movements, facial expressions and other types of communication that really help me to play well and find the correct tune.”

Belen explained that when Szilagyi’s basic level of hearing is diminished, her other senses pop up, especially her sense of touch.

“She can imitate sounds and mannerisms and has a remarkable skill of imitation,” Belen said. “Her visual cues are very sophisticated. She is like clay—moldable, flexible—yet she has her own identity as well. She is truly the ideal young artist.”

Hearing aids, ear plugs and no ear plugs

During her freshman year at U-M, Szilagyi suffered some serious ear infections that led to further damage to her fragile hearing. During the entire fall semester, she could not wear hearing aids because of sharp pain.

Again, no quitting, just a break and new adaptations. Now, the only way Szilagyi can play and tolerate the sounds is to wear ear plugs.

“It is a hard thing to explain,” she said. “While I struggle to hear ordinary sounds and conversations at a normal volume, my ears are extremely sensitive to loud sounds and pressure and it causes sharp pain in my ears.”

Her professor works closely to adapt to whatever Szilagyi needs to do.

“Her lessons are a bit crazy to watch,” Belen said “She has her hearing aids near by and they go in and out. When I need to talk to her, it goes in, and when she is playing, it goes out. It is challenging, but somehow, we are managing it.

“Instead of being frustrated, she laughs. As serious as the situation is, she is able to look at the big picture and realize that this is all joy. She has an amazing attitude. I know there are tears, sacrifices, pain and frustration, but there is also gratitude. She always rises from the challenges, and I am sure she will have a unique and important career as a violinist.”

This article was repurposed with permission from Michigan News, University of Michigan.

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Everything Sounds

By Caryl Wiebe

Sometime in grade school, my parents noticed I favored my right ear because I turned it toward people during conversations. Concerned about my hearing, they took me to an ear, nose, and throat doctor who put drops in my ears for my eustachian tubes, the passageways that connect the throat to the middle ear. This provided very little improvement, but I didn’t worry. I felt could hear the important things in my world and maintain my ability to sing a cappella with my sisters in grade school and then in choirs in high school and college.

At 18, I got married and had three children in the eight years that followed. Over time I noticed my hearing was considerably declining in my left ear, even though we were able to tour as a singing family for eight years to churches in Oklahoma and California, and even sang on the radio. I was always able to hear my family, but my husband and I noticed that it was hard for me to keep up when we were in church or in a group. 

With his support, I decided to see a well-respected ear surgeon, Gunner Proud, M.D., at the University of Kansas Medical Center. Dr. Proud determined that my stapes had a calcium overgrowth that prevented its movement (otosclerosis). He had a strong reputation as a surgeon, so I was comfortable undergoing a stapedectomy, a middle ear procedure to restore hearing with the insertion of a prosthetic device.

I was dizzy after the surgery, but within three or four days it was deemed a success and I was pleased by what I was able to hear again. “I can hear the tires,” I announced to my husband. He was amused—he didn’t know what it was like to live without life’s most ordinary sounds.

I was thrilled until my hearing began to deteriorate in my left ear again. Disappointed, I returned to the medical center. Dr. Proud explained that calcium had started to grow around the plastic prosthetic "hammer" that he had inserted into my left ear. Concerned another surgery would eventually lead to the same result, he suggested a hearing aid for my remaining good ear, my right ear. I was hesitant, but I was now 30 and eagerly wanted to hear. I purchased my first of many hearing aids.

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I'll never forget the first time I had my hearing aid on while giving my children a bath in our cramped little bathroom. I thought the loud noise from their splashing and kicking and laughing would drive me crazy with my aid in my ear. But I decided that if I removed it, I’d fall into the habit of removing my hearing aid in every noisy situation.

That bath was over 52 years ago, and to this day, I maintain the importance of keeping it on, especially when giving advice to older folks. Many complain that “everything sounds different with a hearing aid,” which is true—but at least you can hear! 

So this is my story, no cochlear implant or anything else. I get along very well with my hearing aid and at the age of 82 I don't want to try anything different.

Caryl Wiebe lives in Kansas.

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I Would Love to Hear the Conversation

By Joe Mussomeli

Music is another language that calls to my brother, Alex. Though he was born with hearing loss, he experiences music as more than just sounds, as something more beautiful. He sets his daily activities—painting, doing homework, or reading—to the melodies of either classical or popular music. 

Music for Alex, and for many others with hearing loss, is both a blessing and a curse. Sometimes loud music volumes, especially in crowded spaces, can be a distraction for him. This recently became apparent at dinner in a restaurant with our parents. At first, he appreciated everything about the restaurant: the delicious smells, the cheerful faces, and the lively music.  We talked amongst ourselves until problems arose for Alex. Alex struggles to hear what others say under ordinary circumstances, but in a loud restaurant, conversation is virtually impossible for him. 

Restaurants serve and are staffed by so many people in close quarters, all of whom are immersed in their own simultaneous conversations. Music creates another layer of sound on top of these many voices. In this environment, Alex is only able to hear a tornado of noises, all scrambled together, that do not make any sense to him. 

That evening at the restaurant, Alex desperately tried to make sense of what we were saying, but couldn’t. The noise was too loud and too much to bear. We tried to accommodate Alex by repeating our words or speaking closer to him. Unfortunately, as the evening went on, the restaurant got more crowded and the noises, including the music, grew louder.

Eventually, Alex couldn’t manage the noise anymore, so we left. When we got home, Alex sat in his room for hours before I eventually entered to ask if he was okay. He was unhappily replaying the experience in his head. He told me, “I was lost in a storm of noise, unable to find my way out.” 

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I just sat there for a moment, unsure of how to respond, but I knew I had to say something. So, I asked Alex what he was going to do about his problem. Would he find a solution or simply refuse to go to another restaurant ever again? The choice was up to him. With that, Alex reflected, and eventually, an idea came to him: The Mini-Mic. 

The Mini-Mic is an assistive device Alex had previously used at school whenever he needed to hear others more clearly in crowded, noisy spaces. When someone speaks directly into the mic, the audio feeds into Alex’s hearing aid and cochlear implant. The mic had worked well in the classroom, so Alex figured that it could work successfully in a restaurant, too. After this realization, Alex was determined to give the restaurant another try.  

Nothing had changed at the restaurant, but Alex had. The crowded restaurant buzzed with loud chatter and music. Alex was not discouraged. As soon as we were seated, my mom placed the Mini-Mic on the table. Alex connected his implant and hearing aid to it, and then, he could hear everything. Just like everyone else, Alex was able to enjoy a meal and conversation at the same time. He was able to dine with us, talk with us, and laugh with us. And he was able to enjoy the music, playing vibrantly in the background.

Joe Mussomeli is an 11th-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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Bodybuilding Against All Odds

By Mersal Faizi

Meet Elizabeth “Elizzy” Galvan, a 40-year-old professional bodybuilder from Fargo, North Dakota, who doesn’t fit the stereotypical presentation of someone in her chosen sport. She is deaf, lives with Usher syndrome, and has one arm—all so-called limitations that make her success exceptionally inspirational.

Galvan lost her right arm at age 3 in an accident with an old-fashioned washing machine. The same year, she developed a bilateral hearing loss as a result of an illness and was fitted with hearing aids.

Photo Credit: Michael Kehoe

Photo Credit: Michael Kehoe

Galvan’s parents chose to enroll her in North Dakota School for the Deaf at age 3, where she learned to communicate with American Sign Language (ASL). Decades later, this remains her preferred mode of communication. She also uses notes, speech-to-text, and body language when her conversational partner does not know ASL.

During a routine vision screening test in school at age 16, Galvan was diagnosed with Usher syndrome, the most common genetic disorder causing progressive hearing and losses. The diagnosis was unexpected because Galvan does not have a known family connection to Usher syndrome. “This explained why I would always bump into things and lose my balance,” Galvan said.

Galvan’s father required she wear her hearing aids while she was in school. Though the devices improved her hearing, Galvan says she disliked them greatly because she found pride in her deafness and didn't want to change who she was. With the freedom to make her own decisions at 18, Galvan stopped wearing her hearing aids.

As an adult, Galvan learned how to function comfortably with the help of a friend and Usher advocate. Galvan’s friend recommended she ask someone to tap her shoulder when there is a step in front of her, and to use hand gestures close to her face to signal to her that others are present. These methods became necessary when her vision began to worsen and she was mistaken for being rude when bumping into people unknowingly.

In 2015, Galvan underwent a major back surgery that left her weaker than she was before. Through her own research, she discovered bodybuilding would help her regain strength. After just one bodybuilding session at the gym, Galvan felt energized and ready to improve herself mentally and physically. “My conditions don’t limit me, but motivate me to become stronger,” Galvan says.

Galvan exercises independently in facilities that fit her needs. Before joining or using a new gym, she carefully evaluates the space and equipment to make sure it’s well-lit and spacious.  She wants to make sure it's safe to work out in without further injuring herself.

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Still fairly new to bodybuilding, Galvan has already won awards in the sport. She has earned  second, third, and fourth place trophies in competitions and received an award for inspiring others from the National Physique Committee, the largest amateur bodybuilding organization in the U.S. Galvan will participatie in her third bodybuilding competition in October 2019.

Galvan considers her bodybuilding journey her way of showing people she is capable of defeating the odds. “Disabilities don’t prevent us from doing anything,” she says, “they just make us do things differently.”

Former marketing & communications intern Mersal Faizi studies corporate communications at Baruch College.

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The Man Who Chased Sound Wore Hearing Aids

By Sue Baker

The inventor who changed music and the guitar player who had a room full of music awards wore hearing aids. Legendary musician Les Paul spent his whole life looking for the perfect sound. Ironically, for a good portion of his life he had to pursue his passion for sound while wearing hearing aids.

Before Les Paul performs at the Iridium Jazz Club in New York City, Marty Garcia adjusts his hearing enhancers. Credit: Christopher Lentz.

Before Les Paul performs at the Iridium Jazz Club in New York City, Marty Garcia adjusts his hearing enhancers. Credit: Christopher Lentz.

Les’s hearing loss started in 1969 when a friend playfully hit him over his right ear, causing his eardrum to break. Surgery to repair the damage had its own complications and Les was left with compromised hearing. A few years later another friend did the same thing to Les’s other ear with the same devastating results.

Les disliked how his initial hearing aids made voices sound “tinny” and higher pitched than normal and began to look for a solution. He explored options with numerous audio and hearing aid companies. In the mid-1990s Les connected with Marty Garcia who over time became his go-to audio friend, helping to improve his hearing aids.

The founder of audio and earphone company Future Sonics, Marty created the customized Ear Monitors brand to help entertainers reduce vocal and hearing fatigue. Les tried Ear Monitors during performances and said the devices’ special transducers took his hearing back 35-plus years.

Each Monday night Les performed two sets at New York City’s Iridium Jazz Club. For two hours before the first performance, he did a sound check, analyzing every component. Les had the settings on all the sound equipment photographed so that each week he could tinker with them and study the effect of his changes.

After the shows, Les wanted to be available to sign autographs and meet his audience. To his frustration, he found that it took him too long to change from his onstage Ear Monitors to his “regular” hearing aids. Many fans left before Les could connect with them. Marty’s response was to create a hearing enhancer that Les could wear while performing as well as for everyday use.

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Les often joked about his hearing aids. If a battery went out while he was performing, Les would tell his audience not to get their hearing aids at a hardware store. He and Marty also understood that people hear not just with their ears, but with their brains. Together they created a way for the man who chased sound to be able to continue to enjoy and perform it.

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Sue Baker is the program director for the Les Paul Foundation, and thanks Marty Garcia, Christopher Lentz, and Arlene Palmer for help with this article. For more, see lespaulfoundation.org. Hearing Health Foundation is grateful to the Les Paul Foundation for its commitment to funding tinnitus research through HHF’s Emerging Research Grants program.

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