cochlear implant

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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Hearing Loss Is My Superpower

By Frank Barnes III

Teen angst may be a rite of passage for everyone, but for me it was amplified, if you’ll pardon the pun. Despite receiving a cochlear implant at age 22 months, and being mainstreamed into my local public school district from kindergarten, by late middle school into high school I had became bitter and resentful about my dependence on hearing technology. I saw it as a burden.

Angry and frustrated, I felt self-conscious about the external sound processor on my head, believing it was all that people knew and judged about me. By wearing a hearing assistive device, I thought that I was broadcasting, “I need assistance.” I felt incompetent and incapable, and to show that I didn’t need it, I didn’t wear it to my eighth grade graduation party and kept removing it during freshman year of high school. I felt like not leaning into the hearing loss was a better choice for me.

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This meant I also had no interest in actively seeking out the hearing loss community, and instead passively rejected it, not out of any sense of malice but just because it didn’t feel like somewhere I needed to be. I consistently resisted any nudges from my parents to connect with people with hearing loss who also wore cochlear implants.

It may not surprise you to hear that this only sunk me lower, affecting not only my self-esteem but also what had been my high honors/academic excellence, athletic performance, and social relationships.

Age 22 Months

I have a profound hearing loss in both ears, which resulted from bacterial meningitis. My parents first noticed my hearing loss when I was 18 months old. At age 22 months I received a cochlear implant in my right ear. That it was a mere four-month window between the first signs and diagnosis of my hearing loss until implantation is a remarkable tribute to the commitment and efforts of my parents and the professionals all focused on finding the best solution for me and my family. My surgeon was the late John Niparko, M.D., of Johns Hopkins University, a true leader in the field. At the time in 1997 unilateral implantation was the protocol; I don’t use anything in my left ear.

As a toddler, I attended Summit Speech School in New Providence, New Jersey, to develop my speech, auditory, and social skills, and was able to be mainstreamed into the local public schools starting in kindergarten. I was sent to school with a boxy FM receiver that I had to use throughout the day in order to function with my typical-hearing classmates and teachers.

It’s a big responsibility for a kid, from age 6 and up, already struggling to pay attention to the teacher and socialize with other kids, to also have to change an FM box’s batteries and make sure it doesn’t break or get wet. Over time, I resented having to use it and just stopped in ninth grade—not because I was bullied but because I felt like I didn’t need it.

It was during this period of self-isolation from the hearing loss and cochlear implant community when an invitation for a reunion at Summit arrived. Of course I did not want to attend. But at the prodding of my parents, I did go. And that’s where and when I had my epiphany.

Back at Summit, I found myself surrounded by other alumni—all of us now teens and young adults—who shared their stories of living full lives. Listening to them speak, I saw they were each succeeding in school and prospering in the world—while wearing the same hearing devices that I wore. It was an eye-opening experience, one that planted the seed of-self acceptance that would slowly blossom to change everything for me.

Hearing their experiences, I realized, all of a sudden, that my hearing condition in fact gave me a foundation to achieve any goal and to become successful despite the loss of one of my senses. Everyone in that room reminded me of where I have been, and how we all have similar conditions and struggles. I saw the staff, who to this day are still there teaching and educating and loving and supporting—and the positive effects this has had on all of the alumni. I realized I had distanced myself from the very people, teachers and students alike, who made me who I am today.  

Age 22 Years

During college at Stony Brook University in New York, I did an academic year “abroad”—I was not overseas physically but “traveled” emotionally. I attended California State University, Northridge, and developed friendships with D/deaf students, which helped me gain confidence about wearing my external sound processor in new environments. I met people whose experiences nearly mirrored mine, which made me feel empowered and a part of the community.

I also took classes in D/deaf studies: American Sign Language and the hearing sciences (audiology coursework). When I learned about the anatomical framework of the ear/body relationship, I had a newfound appreciation for the astonishing technological capability of cochlear implants and profound work of audiologists and hearing specialists.

I graduated last spring with a degree in the health sciences, and landed a dream job in the field of immersive technologies, or virtual reality. My company crafts shared VR environments that are visualization and simulation experiences. I wear many hats at the company, working in production, delivery, marketing, and business development, and on project management teams.

The immersive experience is a balance of the visual and the auditory. Given my hearing loss, the visual energy that I get from working in 360° VR media has provided some sensory relief! While the case studies that I've reviewed have not been directly related to disabilities, the company's technology actively transforms emotive storytelling media into greater awareness and empathy, making it a remarkable fit for delivering impactful stories of struggle and triumph.

More than during any other point in my life, I became fully connected to the hearing loss community on the journey toward embracing my hearing loss. Advanced Bionics, the maker of my cochlear implant and Harmony behind-the-ear processor, invited me to share my experiences in New York City and then speak at their headquarters in California. At a Bionic Ear Association meeting in New Jersey, with other CI recipients and their families, I felt grateful to be able to relay words of calm and hope to parents uncertain about post-procedure changes for their child and family.

I have given speeches at, and recently became a trustee of, the Hearing Loss Association of America (HLAA)’s New Jersey chapter, through which I had earned a scholarship in high school. I joined the HLAA’s Walk4Hearing fundraising event and met with legislators in Trenton, New Jersey’s capital, to be present for the Assembly Committee on Education, Science, and Technology because they were voting on Bill 1896, the Deaf Student's Bill of Rights.

The many facets of hearing loss—education, advocacy, empathy, awareness—all have become priorities for me.

Knowing When You Need Support

It’s crazy that I used to think I could succeed without the hearing loss community. They have my back and are forever my tribe. Having a community means you will work together to be your best self for one another. My parents knew how to ask for help, but it took me a little longer to realize the importance of being vulnerable and asking for assistance—and then being able to pay it forward by helping others.

In 5th grade, when I was about 10, I was playing soccer toward the end of the day, with the daylight waning, when the unthinkable happened: I lost my headpiece. No processor, no hearing. I was in the middle of the field, trying to figure out what to do, feeling frustrated and anxious. My soccer coach came over and asked, “What happened?”

I read his lips to know what he was asking, and he explained that the team had to ask more questions to help me find it: “What does it look like? If you don't find it, what will you do? And, how are you?” Which I felt like was a weird question because they wanted to know if I was upset—and I said, yes!

But what they said to me next was, “What can we do to make you feel better?” I really appreciated that they didn’t say “you should” or “you’d better”—they weren't saying hearing loss was a barrier. It was more that they were saying how can we make you feel better, as a person.

We stood in a long line horizontally to cover the field, and slowly stepped across the dirt together, scanning the ground. Amazingly, we found it! I had told myself that if I didn't find it, it would be okay. But everyone else said, “No, we will find this! This is a part of who you are, this is what you need, we’re here for you.” They were saying to me that this is a part of your identity and let's make sure you go home, whole. The team came together for me.

In Turn, Helping Others

Something I had not paid any attention to as a kid is the behind-the-scenes work, the village of hearing healthcare professionals and other experts who work together to create the churning machine that says, “Here are the resources, here are the services so that these kids can succeed.”

I can’t overstate the value of Facebook groups that keep me connected to the community of cochlear implant users, people who have upcoming surgeries or family or friends who do. Get connected through online communities, word of mouth, or introductions by your audiologist or CI manufacturer.

True, I say this like it’s super-easy to send a message to a complete stranger! But I am highly confident that any person with a new diagnosis of hearing loss while find an outpouring of support and friendship from these connections, and will be uplifted and less unnerved after speaking, meeting, and bonding with the vibrant, full-of-life people across the hearing loss spectrum.

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I thoroughly enjoy being a working professional, advocate, and public speaker. In speeches I’ve made to the hearing loss community, I am candid about how I had not realized the value of their community, how I did not want to accept being different. Often people react with surprise or even dismay, but I usually see a few people who are nodding in agreement that we need to share how there are daily struggles and doubts, and that not everything is easy or cheery all the time.

Our journeys must take a measure of self-acceptance about being different, whether we use a cochlear implant, hearing aid, or sign language. Being different from the hearing society is the best thing that I've ever experienced. From the vantage point of my advanced age of 22, I can now see that in your tweens and teens you want to just be like everyone else. It is not until later that you realize that being different, that standing out, is in fact great! My hearing loss is my superpower.

This article originally appeared in the Spring 2019 issue of Hearing Health magazine. Frank is also a participant in HHF’s Faces of Hearing Loss project.

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Breaking The Silence

By Joe Mussomeli

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

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

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

“He can’t hear anything?” Lara asked.

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

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

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

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

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

Joe Mussomeli is a 10th-grade student who lives in Westport, CT. His younger brother, Alex, has been featured in Hearing Health magazine and is a participant in HHF’s “Faces of Hearing Loss” campaign.

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Challenges: A Sibling’s Perspective

By Joe Mussomeli

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

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

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

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

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

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

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

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

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

Joe Mussomeli is an upcoming 10th-grade student who lives in Westport, CT. His younger brother, Alex, has been featured in Hearing Health magazine and is a participant in HHF’s “Faces of Hearing Loss” campaign.

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