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.

Meet, Play, Love: A Deaf Baby Boomer's Account of Her Dating Experiences

By Mary Grace Whalen

Going out into the world of dating was a real shocker for me after my husband of 32 years had passed away.  I asked a friend one day, “What are the rules for dating at this stage of life?” His answer was, “There are no rules.” 

Some of the funniest experiences I have had have been through online dating. Men lie about their age. When you meet them in person, they don’t look anything like their picture. I never went out with anyone who didn’t post a profile picture. Show your face if you have nothing to hide. Then there is the type who has no picture, no profile information but just messages you with a phone number. Huh? What is there to love about someone who won’t be transparent? Then there is the type that posts a profile like it is a resume listing all their accomplishments since the Beatles came to town, letting us know they were at Woodstock and that everyone thinks they are really perhaps 35 or 40. Right!

At the end of my work life, I was an adjunct professor of English. I taught writing and research courses, and I found myself mentally marking up online profiles with that little red pen in my head. If you are going to lie, use spellcheck!

Here are some examples:

“I went to collage.”

“I am a docter.”

“I like feminine woman who wear colon.”

I’ve had some strange dating experiences. Take the hairstylist who was eager to match me up. Bingo! She knew a man who wore hearing aids, was my age and loved traveling all over the country in his RV, — something I would like to do someday. But that is where the similarity ended as I soon learned. After telling him I was trying to lose weight he ordered plate after plate of appetizers, insisting that I taste them all. I’m sure he meant well. But he spent the whole night lamenting about how his second wife left him, — taking most of his assets before leaving. He never asked me anything about my life.  

A few years after being on my own I received my first cochlear implant. One guy I dated wanted to know if my hearing loss would get worse. I told him I did not come with a warranty.

Then there is the guy I met at Panera Bread for coffee. He suddenly stepped out from a hidden doorway when he saw me. Was he going to slip away if he didn’t like what he saw?

One man posted an online profile picture that had to be from 20 years ago. When he showed up, he looked like he might have escaped from a nursing home. It was actually very nice to talk to someone smart, but he wasn’t smart enough to realize I could figure out his age by his comments related to his college days and matching it to history. 

The beauty of this age is that we are not out to impress anyone or yield to their limitations. We date whomever we wish, and many of us care more about mutual values than background. Diversity can only enrich our experience. A dedicated, loving partner trumps differences.

I have since given up on online dating, although I know some who have had good experiences. But I haven’t given up on love. They say you will meet someone when you least expect it. In the meantime, someday if my husband and I do meet again in the hereafter, I have some funny stories to tell him.

Former Hearing Health magazine staff writer Mary Grace Whalen is a freelance writer and the author of Living in the Color Magenta due for publication in 2018. You can visit her website www.marygracewhalen.com or read some of her other blog articles at www.deafgrayanditalian.com.  

One Man's Military Perspective

By Colonel John T. Dillard, U.S. Army (Retired)

The top two disabilities for our returning veterans from Iraq and Afghanistan are hearing loss and tinnitus, or ringing of the ears (which is actually a sound inside the brain). Both conditions became a problem for me and for many of my friends in the service. A lifetime spent in the U.S. Army, starting in the 1970s, meant frequent exposure to gunfire and proximity to screaming jets and helicopter engines.

Even during a peacetime career in the military, our soldiers, sailors, airmen, and marines are subject to a barrage of auditory insults from the weapons and equipment they operate. It all stacks up to a gradual, although sometimes very abrupt, loss of hearing, usually starting at the higher frequencies. For those in the service, any age-related decline in hearing gets accelerated, to the extreme, by repeated exposure to noise at unsafe levels.

For me, tinnitus began faintly and increased with more hearing loss, reaching a crescendo with one big acoustic trauma—a gunshot right next to me in 2009. I immediately began searching for any kind of treatment that would alleviate the loud ringing in my head, which was actually measured in a laboratory at being around a constant 70 decibels. That is roughly equivalent to the noise inside a fairly strong shower, and I soon discovered that people would use long showers to find a bit of relief by masking their tinnitus. (However, I take short showers!)

Armed with a background in biology and technology, I began to review all the research I could find. As it turns out, the typical tinnitus condition consists of several brain components: auditory (hearing it); attentional (your awareness of it); memory (persistence); and emotional (how it affects your mood). After many hours on the web, I spent thousands of dollars on things that didn't work, undergoing treatments in all areas of pharmacology, sound therapy, acupuncture, hyperbaric oxygen, and even transcranial magnetic stimulation.

None of these had any effect for me whatsoever. And despite some incredible recent advances in neuroscience to better understand all of the brain’s complexities, there is still no proven cure or even a viable treatment for tinnitus or to reverse hearing loss.

I eventually realized I would have to tackle my tinnitus with the only things out there that to me were credible for managing tinnitus. I eventually found an audiologist who would fit me with hearing aids that provided a built-in tinnitus masking sound. Without a doubt, this became the best purchase decision of my life...

Continue here to read the full version of "One Man's Military Perspective" in the Fall 2017 issue of Hearing Health. Colonel John T. Dillard, U.S. Army (Retired), resides in Carmel, California, with his wife of 30 years. A senior lecturer at the Naval Postgraduate School in Monterey, Dillard spent his army career serving in mechanized and parachute infantry assignments and managing programs to bring new technological capabilities to warfighters. He serves on a consumer review panel of tinnitus treatments for the Department of Defense (DoD)’s Congressionally Directed Medical Research Programs and also conducts acquisition policy research for the DoD.

I Will Never Know What It’s Like to Not Feel Dizzy: My Ménière's Journey

By Lauren Edmiston

I can still remember the beginning—it’s my earliest childhood memory.

I was in the hallway of a house with my mom, my grandfather, and my brother when I started to feel weird, so I ducked into a walk-in closet to recover. Down on my hands and knees in the closet, the floor was caving in. I began falling in lightning speed, couldn't grab anything, and could only see bits and pieces of light. My surroundings were blurry.

I was a four-year-old girl simply exploring the hallway of a house. That first memory was, in fact, my first ever full-blown episode of vertigo.

I was taken to the hospital for my first of many tests and doctor's visits as a child. Vertigo was not on anyone’s radar, much less Ménière's disease for someone so young. I was misdiagnosed repeatedly, starting with potential brain tumors and neurological disorders.

The dizzy spells continued throughout my childhood and became normal to me. Waking up some mornings and not being able to get out of bed was normal. Not being able to function with tall ceilings was normal. Sitting at church knowing that if I stood up from the pew to take about five steps I’d have an episode was normal. That sensation that starts out much like an anxiety attack, a sensation that I’d feel through my entire body before suddenly spinning uncontrollably, was normal. But it wasn't normal. I advocate for that little girl today because now I know the truth. It was a hard journey learning that I was different.

I was homeschooled, so it wasn’t until around age eight when I realized that not all kids functioned like I did and that there was something "wrong" with me. I was determined to do things my friends did, like gymnastics and soccer. Yes, I did both. Yes, I fell on the balance beam. Yes, I fell on the field. But I kept going.

Adulthood is not easy with Ménière's disease. But childhood with Ménière's disease? It shouldn't happen. Ménière's disease was still not an option or even discussed because of my age. I was 10 when my mother's best friend was diagnosed with Ménière's and recommended a doctor at the ear clinic. My mother’s friend and I always had similar quirks, after all.

I went and, just like that, I was diagnosed—officially this time. Six years of being “just a little different" instantly explained. But also, just like that, there was the realization that not a whole lot could be done. It was not very common to be a child with Ménière's disease—in both ears.

I entered a remission phase at 19 and I'm now 26 with two kids. I still have Ménière's and I will never know what it's like to not be dizzy. I still experience the dreaded ringing and fullness. I'm still incredibly sound-sensitive and I still have days where I wonder how I'm going to get through it with my kids.

I tell my story for parents that might be going through Ménière's with their children. I tell it for people that read my words and can relate to every single one. You’re not alone. You’re not just sensitive to your surroundings. You’re not over exaggerating; you fight a silent illness, you navigate an alternate universe. Never stop fighting for a better quality of life.

But, also, remember to share your story with honor. If you can relate, you can help impact lives of people just like you and me.

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

New Hearing Implant Changes Life of Born This Way Star Sean McElwee

By Carol Stoll and Lauren McGrath

“It could happen” is Sean McElwee’s mantra. Born with Down syndrome, a collapsed right ear canal, and three speech disorders, Sean has drawn on his natural optimism to overcome these medical obstacles and become a television star.

At age 22, Sean was discovered and cast on A&E’s Emmy-winning TV series Born This Way, which follows the lives of seven young adults living with Down syndrome in Los Angeles. Sean’s radiant personality made him a favorite on the show, but his progressive hearing loss eventually negatively affected his on-camera communication. Deaf in his right ear since age six and now losing hearing in his left, Sean resolved to make a change. Hearing rejuvenation “could happen”—and it did happen—thanks to Sean’s positive attitude and a Cochlear Baha System.

Sean enjoying the sights and sounds of penguins at the zoo. Photo by the McElwee family.

Sean grew up going to mainstream public schools in Orange County, CA, because his mom wanted him to experience life like every other child. Throughout his childhood, he developed a plethora of hobbies and talents. Sean has been singing and dancing since age three when he joined his church and school choir. He still sings, though now mostly in the shower at home to Adam Lambert songs. Sean also loves to break dance to rap and hip-hop music, and can even put both feet behind his head. He plays many sports including basketball, baseball, flag football, swimming, and golf. He is also an expert bowler and has scored a perfect score of 300 before!

In addition to keeping up with his hobbies, starring on Born This Way, and traveling to public speaking engagements, Sean works at a trampoline park where he enjoys talking to the customers. Sean’s new Baha 5 Sound Processor has enabled him to hear clearly while continuing to work and engage in sports and the arts. The new device is convenient because it can connect directly to, and stream audio from an iPhone to his sound processor. Most notably, Sean’s girlfriend can now sit on either side of him during a conversation and he can still hear her.

Sean, now 24, takes his work very seriously and recently started his own clothing design company called Seanese (named after his own language) to further spread awareness of Down syndrome and general positive messages. “It could happen” was the slogan on his first T-shirt, and now he has added dozens of phrases, designs, and clothing items. He is especially excited that he hired a special artist to design new Halloween shirts this October with images of a mummy, skeleton, and zombie.

Beyond furthering his clothing line, Sean’s personal goals include going to all 50 states (he only has 14 left to go!), appearing on The Ellen DeGeneres Show, going to Atlantis Paradise Island in the Bahamas, and working out to develop his abdominal muscles. He hopes that in the future, “everyone will accept people with Down syndrome and see that we’re just like everyone else.”

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