Hearing Loss Lives with Me

By Sonya Daniel

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

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

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

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

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

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

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

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

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Is It Overstimulation?

By Eric Sherman

My younger son Cole has been wearing cochlear implants (CI) since 2005. He was barely a toddler, between 18 and 24 months old, when he rejected them.

The initial response from our audiologist was, “We just mapped your son, just do your best to keep the processor on his head.” Unique to every CI wearer, mapping adjusts the sound input to the electrodes on the array implanted into the cochlea. It is meant to optimize the CI user’s access to sound.

But after several weeks, and our audio-verbal therapist told us there was something wrong and referred us to another pediatric audiologist, Joan Hewitt, Au.D.

Eric Sherman and his son, Cole

We learned that refusing to wear CI processors is generally a symptom of a problem that a child can’t necessarily express. Their behavior becomes the only way to communicate the issue.

“Our brains crave hearing,” Hewitt says. “Children should want to have their CIs on all the time. If a child resists putting the CIs on in the morning, cries or winces when they are put on, or fails to replace the headpiece when it falls off, there is a strong possibility that the CIs are providing too much stimulation. Some children appear shy or withdrawn because the stimulation is so great that interacting is painful. Others respond to overstimulation by being loud and aggressive.” 

Hewitt says research discussed at the Cochlear Implant Symposium in Chicago in 2011 (or CI2011, run by the then-newly created American Cochlear Implant Alliance) addressed the issue of overstimulation. A study that was presented, titled "Overstimulation in Children with Cochlear Implants," listed symptoms that indicated children were overstimulated by their cochlear implants: reluctance or refusal to wear the device, overly loud voices, poor articulation, short attention span or agitated behavior, and no improvement in symptoms despite appropriate therapy.  

When the researchers reduced the stimulation levels, they found very rapid improvement in voice quality and vocal loudness and gradual improvement in articulation. Finally, they found “surprising effects on the children's behavior”—the parents reported a marked improvement in attention and reduction in agitation.

In “Cochlear Implants—Considerations in Programming for the Pediatric Population,” in AudiologyOnline, Jennifer Mertes, Au.D., CCC-A, and Jill Chinnici, CCC-A, write: “Children are not little adults. They are indeed, unique, and to address their CI needs, they require an experienced clinician. Most children are unable to provide accurate feedback while the audiologist programs their cochlear implant and therefore, the clinician must take many things into account.”

These include:

1. The audiologists' past experiences with other patients

2. Updated information regarding the child's progress (from parents, therapists, and teachers 

3. Audiometric test measures

4. Observations of the child during programming

5. Objective measurements

6. If age appropriate, the clinician will train the child to participate in programming

Many of the decisions made during programming appointments come from the clinician's knowledge and experience, rather than the child's behavioral responses. But your child’s reactions should also be taken into account.

If your child continues to refuse to wear their processors after a remapping, take into consideration your audiologist’s experience and mapping approach and seek a second opinion. When we met with Hewitt, she found our child’s map was overstimulating. Once she remapped using a different approach, our son had no problem wearing his CI processor again.

Los Angeles marketing executive Eric Sherman is the founder of Ci Wear, a patented shirt designed to secure and protect cochlear implant processors. April is National Autism Awareness Month. Read about how Sherman and Cole manage Cole’s hearing loss and autism spectrum disorder conditions in  “When It’s Not Just Hearing Loss” in the Fall 2016 issue of Hearing Health.

The Power of a Mother’s Advocacy

By Vicky Chan

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

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

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

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

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

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

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

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

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

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

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

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The Best Lesson Yet

By Layla Rudy

I was diagnosed with bilateral sensorineural hearing loss at age 3, after a series of unsuccessful doctor visits. Two years later, I was going to the audiologist to get my hearing aids for the first time. I remember being frightened by a picture in the waiting room of the shiny tube that comes out of the ear molds attached to hearing aids. My little brother was crying in the stroller as we left the doctor’s office for brunch.

Layla, age 5, with one of her brothers, James

I went to speech therapy for the next four or five years; during school, along with two other kids, I was pulled out of class a few times a week. I remember thinking that I didn’t belong there, that I was “normal,” and that everything was fine with me. But the teachers and administration didn’t know what to do with me—they thought something was wrong with me, and they just threw me in the same boat as the kids with speech problems or ADHD.

I was the only kid in my elementary school with hearing loss. While it was great that my mom wanted to mainstream me, looking back, it was clear the school didn’t know how to handle a student like me.

The problem was ignorance more than a lack of resources—although that was an issue, as well. My teachers plopped me in a desk—not always in the front of the room—and, not understanding how important the FM system was for me to hear in their classrooms, didn’t wear it. I thought the teachers didn’t care about me, but it turns out they just never learned how to deal with students with hearing loss. I was too embarrassed to say anything, so the FM systems often went completely unused. For the same reasons, I was never assigned a note-taker. I was the outlier in a room full of typical children.

Identical issues continued in middle school and high school. I developed anxiety from a young age and, by adolescence, the effects were more severe. In retrospect, a lot of my anxiety stemmed from my worries that my peers were talking about me, or that I was not fully aware of my surroundings. To put it simply, I was anxious because I couldn’t hear.

My mom had always told me that college would be easier—I could get a note-taker and finally have the resources I never had. When I applied to Brooklyn College, I found the Center for Student Disabilities Services on their website. I was thrilled to find that they had a section devoted to hearing loss and deafness. Better yet, professors were given a guide to understand how each disability was to be handled and treated.

So, when I arrived at their offices, I filled out forms and submitted my hearing test results. They had told me to come back in a few days, at which point I would have everything I had wished for in elementary school.

Ironically, I never bothered to go back to their offices, and I never bothered with their accommodations.

I have spent my whole life going home and teaching myself what the teacher had taught us in class (that I could not hear)—taking my own meticulous notes that my classmates begged to borrow. I have always wanted a note-taker, an FM system that gets consistently used, and empathetic teachers. Now that I finally have access to all of this, I don’t need it.

I realize I’ve subconsciously trained myself not to rely on anyone else; it’s not that I don’t want to ask for help, or that I’m too embarrassed. I know that if I need it, I can ask, unlike when I was in elementary school. But my hearing loss, my disability, has enabled me to rely on myself, to be aware of my surroundings, to better communicate with others.

And to me, self-reliance is the best lesson yet.

New Jersey native Layla Rudy is a freshman at Brooklyn College planning on studying biology to eventually conduct auditory research. She is also a participant in HHF’s “Faces of Hearing Loss” campaign.

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Ugly Emotions

By Lisa Peten

Some time ago, I was having a text conversation with a friend who also has bilateral sensorineural hearing loss. When I relayed to her that I am thankful in many ways for the changes that have occurred in having this condition, she was outraged that I would say such a thing. This prompted her to rant 1,001 ways in which her hearing loss is essentially ruining her life.

Despite being 20 years my senior, we share similar emotions in dealing with our late-deafened and hard-of-hearing experiences. Since we are usually so very aligned in our thoughts and emotions, I imagine my appreciation for this condition caused her outrage and to be even more perplexed about my gratitude for this condition. In any event, we hashed through this discussion and came to an “agree to disagree” conclusion which posed a crossroads in our friendship. We closed this discussion with authentic, raw emotion, conjuring up dispassionate experiences which urged persuasion to change the other’s mind. In the end, we were both thankful for the honest sharing and I learned a thing or two more about compassion and empathy.

I learned that “ugly” emotions (i.e. rage, envy, and hate) about being deaf/hard-of-hearing have not been given the time, space, or energy to address them. They are sometimes buried falsely with the perception that these types of emotions are unacceptable. Emotions like helplessness, frustration, and sadness seem to easily find ready support, but the ugly emotions present an elephant in the room never to be acknowledged.

After years of being unsuccessful in burying “ugly” emotions, I found three techniques to love yourself through these moments:

Share Immediately

For a long time I told no one except my family about my hearing challenges. It was too vulnerable an act for me to bare. Nowadays, sharing this detail immediately has had a positive effect on my experiences at restaurants, retail establishments, and even medical visits beyond the ENT and audiologists. Lessons learned along the way has taught me to release the emotions quickly, to avoid an emotional explosion later.

Dispense Energy

When emotions of any kind, especially the ugly, surface, dispensing activity provides another early release. In the past, I would practically run from humiliating situations when hearing incorrectly. Now, I can easily own up to the error and explain my hearing loss. While the embarrassment is still present, it does release my ugly emotions and allow the moment to pass without festering.

Forgive with Compassion

I continue to struggle with others’ reactions to my hearing loss. Eleven years after my diagnosis, I still feel sullen when I communicate with people who I have known before my hearing loss. Often times, after they learn of my hearing loss, they speak louder and unconsciously use body language to essentially ignore me, especially during group conversations. I know this is ignorance or discomfort on their part, but it still hurts. I have learned to fire away compassion for all of us in order to ease these emotionally ugly moments.

I hope the point of contention of my hearing loss someday subsides. However, in the meantime, I will own all emotions associated with my hearing loss, and will remember to extend greater compassion and empathy to those of us who need it when ugly-filled emotions become present.

Lisa Peten is a self-help hearing coach, mind-body empowerment speaker, and health advocate blogger, on a mission to empower health-hungry communities to become more proactive in obtaining nourishing foods and seeking holistic health alternatives. She is the founder of Sound Health and Hearing, a health coaching boutique consultancy. She is also 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.



My Ears Don’t Work, But My Implants Do

By Caroline O.

“No Walkman in the water, ma’am.”

I’m in my neighborhood park, about to go swimming in a New York City public pool. “Oh sorry,“ I stammer to the City Parks employee addressing me. “It’s not a Walkman. It’s a waterproof cochlear implant processor.”

She looks at me like I’m speaking Greek. “No electronics in the water,” she repeats.

“But it’s to help me hear,” I explain.

She doesn’t budge. She doesn’t understand. I have to try another tactic. Deep breath. “I’m deaf. I cannot hear without this, so I need to wear it while I swim. It’s not a Walkman, see? It’s a magnet that goes on my head.”  

Caroline and her family

The word deaf gets her attention. Now she gets it. Here in front of her is a person with a disability. Here is a person using an accommodation. She knows she cannot stop me from using it. Looking embarrassed, she waves me through. I thank her and smile.

In the five years since I’ve gotten my cochlear implants, one of the biggest challenges—or at least, one of the most unexpected ones—has been the need to explain the technology to others. Thanks to my long, thick hair, most of the time no one can see my implant processors at all. But when they can, the reaction is often one of bemusement or blankness.

My experience with the City Parks employee was not the first one like that, or the last. Once, on vacation, someone asked me why I needed an MP3 player in the ocean. He thought I was listening to music. He didn’t understand that I was listening to the whole world.

On a planet where only about a half million individuals out of 7.5 billion use a cochlear implant, ignorance of the technology is to be expected. And I’m proud to speak on its behalf, to explain why I need them and what they do, and to proclaim that while the technology is a marvel of science, for me it’s also just pure magic.

I love making people smile when I tell them about the first time I heard the swish-swish that applying body lotion makes (a sound I never knew existed!), or how I learned that you don’t have to actually stand in front of the oven waiting for it to reach the desired temperature, because… Did you know there’s a beep? (They knew. I did not.)

But it’s also frustrating at times. “I’m not tuning out my children,” I want to shout to those shooting a disapproving glance at that wire sticking out of my head. “I’m tuning in!”

Even relatives and close friends did not, initially, quite understand how my cochlear implants work. The very day my first implant got activated, a friend texted, “So, do you hear perfectly now?” I had to explain that, in fact, that first day I heard very poorly; it would take time, patience, and months of listening practice with a good speech-language pathologist before my brain would learn to process what initially sounded artificial and electronic as the normal, everyday sound of objects and voices.

Is my hearing perfect today, five years post-implantation? No, but it’s pretty darn good. Especially considering that, after decades of moderate to severe hearing loss, today I have no natural hearing left at all.

My ears don’t work. But my implants do, splendidly. And I couldn’t be happier.

This article originally appeared in the Winter 2018 issue of Hearing Health magazine.

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).

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 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 painting—a 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. 

The Next Two Million Days

By Lauren McGrath

The future sounds clearer and looks brighter for Ethan, age 6, who recently began wearing ReSound LiNX 3D hearing aids recommended by his audiologist. His new hearing aids were very generously donated to him by ReSound.

Ethan was born with mild-to-moderate hearing loss in his right ear and moderate hearing loss in his left. Thanks to universal newborn hearing screening legislation, an initiative promoted by Hearing Health Foundation and other organizations, Ethan was diagnosed at birth and able to receive immediate intervention. In 1993, only 5 percent of newborns were tested at birth for hearing loss; today 97 percent of babies are screened before they leave the hospital. Since age 6 weeks, Ethan has worn hearing aids and received speech therapy. He is now a happy first grader at a New Jersey school with many on-site services for students with hearing loss.

Ethan is an older brother to twin girls, an avid self-taught reader, a math enthusiast, a soccer player, and a martial arts student. He is ecstatic that his new hearing aids have already improved his life; from the moment he put them on, he noted how much more easily he could hear with them compared with his previous pair.

He especially appreciates their small size; the devices do not impede his favorite activities and don’t fall out. As Ethan is easily overwhelmed by noise, he also likes that he can seamlessly adjust the volume on his hearing aids through the ReSound Smart 3D smartphone app. He’s so proud of their style and features that he brags about them to his soccer teammates.

“Ethan asked me, ‘Can I wear my new hearing aids for the next two million days?’” says Jason, Ethan’s dad. It speaks volumes to Ethan’s experience that he is ready to make a 5,500-year commitment to his new hearing aids. At a young age, he is already on track to overcome the challenges associated with hearing loss. Ethan is confident about his hearing loss, and he and his family are thankful he was graciously provided with hearing devices that make him happy.

Ethan is one of our youngest participants in "Faces of Hearing Loss." This article originally appeared in the Winter 2018 issue of Hearing Health magazine. 

D.J. Demers: Hearing Loss Awareness Through Comedy

By Carol Stoll

After his first audition on America’s Got Talent, D.J. Demers was described as funny, original, and likable by the tough, at times brutally honest judge Simon Cowell. Demers performed a stand-up routine that included witty banter with the judges and had the audience in stitches. Demers is now an award-winning stand-up comedian and has appeared multiple times on the late-night talk show Conan. He also happens to have profound hearing loss.

As an infant, D.J. had many ear infections and when his parents noticed that he wasn’t hearing well, they took him to an audiologist. He was diagnosed with severe-profound bilateral sensorineural hearing loss and started wearing hearing aids in both ears at the age of four. Not wanting to be defined by his disability, D.J. turned to making others laugh. He dreamed of being a comedian since childhood, and finally gave stand-up a shot when he was 21. “I was instantly hooked. Best decision I ever made,” he explained.

D.J. Demers is not your typical cynical comedian; he always has a positive outlook and makes light of heavy situations. His goal is to make his audience feel “free from concern,” as put by his comedian idol Jim Carrey. Demers likes to frequently interact with the audience, but sometimes has difficulty hearing them from the stage. Instead of getting discouraged, he simply makes it a part of the show. “It’s never a negative experience because I never make it one,” Demers said. “An audience follows your lead and my aim is to always keep it positive.”

Demers has also found a perfect middle ground with regards to discussing his hearing loss during his comedy shows. His jokes cover a variety of everyday topics, but he doesn't shy away from proudly calling out his hearing aids and describing the unique, humorous situations that he faces because of his hearing loss. For example, he points out the quick transition between pillow talk with his girlfriend and silence when he takes out his hearing aids to go to sleep. He asks her for a “last call” on final thoughts for the day and then goes to sleep in silence. He brags about sleeping like a baby with no distracting noises and says in a sarcastic deadpan voice, “It really makes you wonder...who has the disability?”  

D.J., now 31 and residing in Los Angeles, has been recognized for his comedic talent with multiple awards. He won the 2013 Toronto Comedy Brawl and the 2014 Homegrown Comics Competition at the Just For Laughs comedy festival in Montreal. He was named “Best Breakout Artist” at the 2015 Canadian Comedy Awards. He appeared on season 11 of America’s Got Talent in 2016, and he has performed a stand-up routine twice on Conan, in 2014 and 2017.

This past October and November, Demers performed across the country on the Here to Hear Comedy Tour. The tour, sponsored by Phonak, aimed to “shatter stigmas and raise awareness about hearing loss through the power of laughter.” Demers was grateful for the opportunity to connect with hard-of-hearing people and valued all of the conversations he had with those he met along the way.

Demer’s pointers for those who are just getting a hearing loss diagnosis include: figure out and implement the necessary tools needed to help you in your day-to-day life, surround yourself with positive people, and don’t be afraid to advocate for yourself. For those with hearing loss who are passionate about comedy or any type of performing arts, Demer advises, “Just do it. That’s it. If it excites you, do it. Don’t impose any fictional limits on yourself.”

Tuning In

By Laura Friedman

As my three-year work anniversary approaches, I’ve been reflecting on my learnings as a team member of Hearing Health Foundation (HHF). There is one that sticks out the most: As someone who has only known her life as being one with hearing loss and wearing hearing aids (I was diagnosed at age 3 ½), I don’t know what I’m missing, compared with my typical hearing peers. I have learned from those who have acquired hearing loss later in life, even as young adults, that they are acutely aware of the difference in their hearing experience even with assisted listening devices. They aren’t enjoying music like they once did, they have increased difficulties hearing conversational speech around the dinner table and at restaurants, and they are missing things in meetings that the “old” them would never miss.

Ok, I lied. There are actually two major learnings. The second is, which is something I’ve experienced within my own family, is the prevalence of hearing loss denial and the resistance to treating one’s hearing loss. For those who do acknowledge their hearing loss, many do not wear their hearing devices, further isolating them from a world they were previously a part of.

As a young child when I visited my grandfather, who was notorious for not wearing his hearing aids, I told him, “If I have to wear mine, you have to wear yours!” He would give me his signature smirk and appease his granddaughter. But I knew once I left, back in the drawers those hearing aids went.

Denying the existence of an ailment or resisting treatment is not unique to hearing loss; this is true for many diagnosed with other serious and life-changing conditions. However, when it comes to hearing loss, almost one-third of an estimated 40 million U.S. adults with hearing difficulties haven’t even taken the first step to see a specialist for help. What’s even more troubling is today it is estimated that 360 million people worldwide have hearing loss, with 1.1 billion people at risk for acquiring it, according to the World Health Organization.

In the U.S. nearly 25 percent of those ages 65 to 74 and half of those older than 75 have a disabling hearing loss. An even more astounding fact is that over 70% of adults in the U.S. who have hearing loss and who would benefit from a hearing aid don’t have one.

Studies show that untreated mild to moderate hearing loss is linked to increased levels of loneliness and isolation, depression, dementia, and medical conditions like heart disease and diabetes. It can even hurt earning potential and career mobility. Treating hearing loss can significantly offset and decrease the risk of acquiring these consequences. So the question is: If treating hearing loss deters the onset of detrimental health conditions, why aren’t more people taking preventative measures to protect their hearing or taking actionable steps to treat it?

For those in the U.S. there is unfortunately little to no insurance and Medicare coverage for hearing aids, meaning those who need them most are unable afford them. While there’s still a lot left to do, policy is slowly moving in the right direction: In August 2017 the Over-the-Counter Hearing Aid Act was signed into law, paving the way for a new class of hearing aids to enter the marketplace. This will provide greater access to hearing technologies for those with mild-to-moderate hearing loss at a fraction of the price.

I can’t imagine how frustrating it must be to know what you’re missing; it is my wish that nobody has to experience that feeling. This is why I chose to work for an organization dedicated to funding research to develop better technologies, therapies and cures for hearing and balance disorders. Discoveries are the only way to better the listening experience of those with hearing loss and bring more options to the market.

I ask you to do this one thing: Get your hearing tested and encourage your friends and loved ones to do the same. If necessary, treat your hearing loss. Treating hearing loss has been a life-changer for me, as well as millions of others around the world, who choose to tune in, ultimately benefiting our health, work, and life.

Laura Friedman is the Communications and Programs Manager of Hearing Health Foundation. Read her hearing loss story in the Spring 2016 issue of Hearing Health magazine.