IT HAPPENED TO ME: I'm 27 and I Just Got Hearing Aids

By Sarah Klegman

As un-cool as they may be at times, and even though my hearing loss isn’t as bad as most, hearing aids have changed my life.

After an adverse reaction to medication left me with Tinnitus (a constant ringing in your ears, it’s lovely), I was put through a series of hearing tests. I sat in a vault-like room listening for beeps of varying volume. Afterward, they told me that I had high frequency hearing loss, and I’d be a great candidate for hearing aids.

Urm, no, I do not need those.

Big, clunky, ugly pieces of wannabe skin-color machinery, shoved into wax-filled hairy old-man-ears... I don’t need them. It’s just that I have to read lips in loud places and my close friends know to stand on my left side because my right ear is worse than my left and sometimes I miss important things in meetings and on phone calls.

Ooooooh.

I walk into the hearing aid place my insurance company recommended (but doesn’t cover). The audiologist brings me into his office and runs through what feels like his usual spiel. After tapping his fingers on the keyboard for a minute, he hands me a pair of ear buds that are wired to his computer.

“You’ll hear static for a moment before they turn on.”

I put them in, and hear the static like he says. Then the static stops, and suddenly, there are… sounds.

Everywhere. Everything has a sound. It’s like I can see the space around me, but with my ears. I hear the hum of his computer, the sound of his pants on his office chair as he shifts his position to look closer at the screen.

He picks up a piece of paper and I hear it. I hear a piece of paper. It crinkles and as his fingers move across it, I can hear the texture.

My eyes start uncontrollably watering as I realize how much I have to experience and hear. I shuffle my feet on the floor, taking so much joy in hearing the synthetic threads against my shoes. I kick my purse with my foot and hear everything inside move. It's like a drug, and I am greedy for it.

He tells me that I can take them off… but I stall, asking him questions so I can keep them in a bit longer.

“Where are these manufactured? How long have you been an audiologist? Have you ever been to the restaurant next door?”

We go over pricing (average being $4k+) and I leave his office seeking out a second opinion.

I did some Googling and landed on the website of Dr. Stephen Kirsch, an audiologist just up the street. His website said that he and his wife spend time outfitting children in Africa with hearing aids. Um, yes. I like him already. I call and make an appointment.

He welcomes me into his office and I’m feeling anxious, but trying to play it cool, wondering when I’ll get to put hearing aids in my ears again. We start talking about my hearing loss, and then he asks me if I want to try some out. “YES, YES I DO.”

His aren’t wired to a computer like the other guy’s. They’re just regular hearing aids, and they’re TINY. Like, I could accidentally swallow them in a salad and not notice, tiny.

He helps me put them in, and my eyes widen, searching the room for something new to hear.

“They’re not on yet,” he tells me. “Oh,” I sheepishly respond.

Just like the other guy, he tells me I’ll hear static for a minute while he adjusts things. Then, like before, my ears switch on. I light up, and this time, so does the other person in the room. He taps his fingers on his desk; he picks up a piece of paper and shakes it around, indulging my greediness for sound.

He tells me some things to expect. How I’ll get used to hearing my own voice, it might be overwhelming in loud places, and… I’ll be able to accurately represent myself. I hadn’t thought of that last one, and I didn’t fully understand it at the time, but I would come to.

He lets me take a pair to test drive. I get in my car, smiling like an excited dog following new smells and I turn on some music. A Mumford and Sons song comes on and I have what can only be described as an eargasm. The violin. I can hear the violin! I didn’t even know there was a violin in this song!

I have high frequency hearing loss, so the higher pitch the sound, the less I can hear it. Harmonies became richer. I could hear the strings of the guitar. The fibers. Then some less exciting realizations came to me – like how those whispered conversations probably weren’t that quiet, my laugh really is that loud, and those toots may not have been silent.

Oops.

When I was younger, doctors said that I had premature hearing loss, but that sentence was never finished with, “and hearing aids could make a significant improvement on your life.” 

So, my family and friends continued thinking of me as a “bad listener.” Which, I guess, technically, I was -- but being called a bad listener hit me in the heart. To me, they were calling me self-absorbed and disinterested.

I know I’m not perfect, but most of the time I was trying. However, just straining to hear someone can come off as unwelcoming. Your face scrunches up, your eyebrows furrow, and your neck cranes out -- body language that reads negatively. So, after a while, I stopped asking people to repeat themselves as often.

“What? Oh… you already repeated it twice, and if I ask once more, you’ll scream-repeat it at me angrily? Oh, um, yeah, no, I totally heard you.”

I asked Dr. Kirsch if I could pick his brain for this article and he enthusiastically agreed. While chatting, I told him about being called a bad listener. He paused, looked me in the eye and said, “But you’re a great listener.” My heart swelled. 

He continued, “You are a great listener largely because you and others with hearing loss pay such close attention to body language and facial expressions which tell more than the words on their own.”

He told me about a lawyer he worked with. The lawyer worried that if people noticed his hearing aids in the courtroom, it would be perceived as a sign of weakness and inspire doubt. 

Unfortunately, because of all the stigma, a lot of people who could use hearing aids don’t get them. As few as 1 in 5 people who have hearing loss actually do something about it.

My first week with hearing aids, I wore them to a beach house with some friends. They were all very happy for me, but I kept hearing this static. Something must be wrong with the hearing aids, I thought.

“There! Did anyone hear that?!”

Nope.

“That?!”

Nope.

Then my friend Sally goes, “Wait a second. Do you hear it right… now?”

“Yes!”

Another moment passes, “And… now?”

“Yes!!”

“Sarah,” she says, “those are waves. You’re hearing the ocean.”

Later, I had a meeting with this guy. I had my hearing aids turned up so I wouldn’t miss anything, so they were even more susceptible to feedback. I hugged him goodbye, his ear covered mine, and my hearing aid made a high-pitched noise (like when a microphone gets in front of a speaker). The guy pulled back and looked at me weird.

“Oh, could you hear that, too?” I asked.

“Yeah, what was it?”

I said, “I – AM – A – ROBOT,” and did the robot.

I thought it was hilarious.

During our chat, I jokingly ask Dr. Kirsch when I should tell a date that I have hearing aids. He sweetly says that I should tell them around the time we start to really care for each other. That’s great advice. 

More likely, I’ll end up stalling until a moment of natural clumsiness occurs, wherein my hearing aids will either fall out, or start blasting audible feedback. Ta-da! 

As un-cool as they may be at times, and even though my hearing loss isn’t as bad as most, hearing aids have changed my life. I believe that shamelessly showing your vulnerabilities can make you an even more likable person. Living honestly inspires others to live honestly.

That’s what Dr. Kirsch meant about being your authentic self. “You can't fully communicate who you are when you can't hear what people are saying to you. People won't listen if they feel like they aren't being heard.”

You strain to hear someone speak, you miss important words -- and as entertaining your shriek may be at the time -- you’re startled when you didn’t hear a friend walk in the room. You’re always on edge.

I hope this reaches people with hearing loss (I’m looking at you, dear friend in denial) and helps them in getting over the stigma and their hang-ups about looking old or handicapped; getting hearing aids can significantly improve your quality of life and how you communicate with the world. It also makes life a bit easier on your family and friends, too. 

Now, when I forget “my ears,” my friends notice. I’ll ask “What?” and they’ll say with a loving/scolding tone, “Are your ears in?”

Originally published on xoJane and republished here with their permission.

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Proud Grandparents

By Darel Sorensen, Ed.D.

When our grandchild Mikaela, now 15, was born, newborn hearing screening was not yet an option at their hospital in California. She was diagnosed with a sensorineural hearing loss at age 23 months, after we noticed she had delayed speech.

At age 2 she began attending an “early start program” and preschool at age 3. Two years later Mikaela was joined in preschool by her younger brother Christian Joseph (CJ), now 13. He had passed the newborn screening test, but by age 2 1/2 he began to lose his hearing. After an alert teacher suggested testing, CJ was also diagnosed with sensorineural hearing loss.

To attend school, Mikaela and CJ traveled for one hour each day. The bus ride is a long one for kids who are toddlers, but our anxiety was tempered knowing that Mikaela and CJ would be getting specialized assistance with their hearing, speech, and language skills as well as learning how to sign. It would help prepare them for mainstream school classes.

Before she was 3 years old, Mikaela had cochlear implant (CI) procedures in both ears. A few years later, also at age 3, CJ also received a CI for his left ear and a hearing aid in his right.

Since the deaf and hard-of-hearing (DHOH) program in their school district spans kindergarten through high school, they have benefited from learning communication and coping skills from the same DHOH and speech-language therapists as they got older. They know to ask to sit on the side of the classroom, so they can more easily rotate to face whoever is speaking, and to be specific about what part of a conversation they missed when asking for something to be repeated.

Mikaela and CJ - 2 1/2 and 1 years old

Thanks to this consistent help, Mikaela and CJ were able to be mainstreamed into their local schools. Now in middle school, CJ has tried his hand at sports and now plays clarinet in the marching band; he was also selected to play in the concert band. Mikaela has played on the school basketball team for four years and received this commendation from her DHOH specialist:   

“Mikaela exudes confidence in class, never shying away from raising her hand, offering her insights, speaking up about her ideas and opinions. She advocates for herself by talking with her teachers about what works best for her. She is energetic, personable, and hardworking. In addition to her own success, she looks out for her fellow hard-of-hearing peers in order to help them succeed as well.”

Recently there was talk that the DHOH program may be moving from its current locations. Mikaela was quick to contact the administration to tell them how much the program meant to her and to her success: “Both DHOH and mainstream teachers… helped me understand everything, and now I’m a straight-A student because of them,” she wrote.

“The DHOH campuses are safer, friendlier, and better than most schools…. If you move the program you’ll be losing the teachers, staff, and students who treated us like family [and] the hearing students at those schools will be losing the ability of learning another language (sign language) and being friends with the deaf. PLEASE KEEP THE PROGRAMS WHERE THEY ARE!! Thanks for reading.”

These steps toward self-advocacy, as well as their self-confidence and concern for others, will serve them well. We could not be more proud. We wanted to share this story about our grandchildren because we believe in HHF and its mission of research, education, and prevention of hearing loss.

Darel Sorensen, Ed.D., is a retired educational psychologist and director of special education services. He lives with his wife, Betty, in California. 

Take It From Me: Auditory Processing Disorder in Class

By Eliza Uberuaga

My legs grow tense as a classmate’s whispers flood my ears. My breath becomes short as another taps his foot against the desk. My stomach lurches as I watch two students turn in their tests. Why can’t I block out the noise? Why can’t I answer the questions faster? Why am I the only one struggling? I must run while they walk, work while they sleep and prepare while they rest.

When I was diagnosed with a learning disability, my parents brought me to the most respected doctors in New York and enrolled me at one of the most prestigious schools in the country. However, that did not cure, fix or help me. Why? Because no doctor, teacher, parent or friend can change the world that tells me I have a problem. I am labeled with Auditory Processing Disorder (APD), characterized as slow and viewed with pity.

I am not asking for sorrowful looks, sympathy hugs or uplifting pep talks. I am asking you to understand that the student in your classroom who needs extra time wasn’t daydreaming during the test. The girl who needs directions to be repeated is listening. The boy who is last to raise his hand has the answer.

These kids likely have APD, a learning disability that slows the comprehension of information. (It is also known as central auditory processing disorder, CAPD.) It is not their hearing that is impaired, but their auditory pathways. Information that is spoken can be difficult to process if said too quickly, in a loud place or in large chunks of speech. Having APD is like listening to a voicemail on a busy street while everyone else is listening to it in a quiet space. While most people can block out that background noise, people with APD hear that noise as if it is the message itself. When given directions, most brains organize the information, as if putting it into filing cabinets. Those with APD take longer to find the filing cabinets, which slows the pace at which they comprehend.

APD affects students in a variety of ways, but students with APD (and most other students) could benefit if we looked at our classrooms the way we look at our world: valuing everyone's uniqueness—in this case, the unique ways in which they learn. Here are some techniques that helped me.

1. Stimulate the Senses
   In an art history class, we learned about the making of a blind arch. Rather than looking at a diagram, my teacher had four kids (including me) make an arch with our arms. Putting pressure on our formation and watching it collapse taught us how to make the most effective structure. I learned about arches by listening, watching and feeling, as opposed to simply listening and writing.
   

2. Teach With Variety
   In a science class, my teacher gave us an outline of the notes, wrote them on the board and lectured us on them—supporting auditory, visual and kinesthetic learners. He allowed each student to retain the information in whatever ways that worked. In this class, no kid was left behind because every kid was supported.
   

3. Create a Quiet Learning Place
   In order for all students to be able to focus, especially ones with APD, it is best to minimize all noise when students are working or trying to concentrate. Although it may seem helpful to speak in a quieter voice, for a student with APD, hearing whispers while working can actually be worse than hearing words spoken at normal levels. Although it may seem helpful to speak in a quieter voice, it is best to not talk at all.

I hope that, by writing to teachers and sharing my story, I can help the 10-year-old girl who cries when she gets home from school and tells herself she will never be smart. Although she may not feel intelligent when she goes to the library to finish a test, she must understand that she does not have a problem. She only feels like she has a problem because the world around her is unable to understand her intelligence. The day will come when she feels the way she learns is truly all right, but maybe that day will come sooner for her than it came for me.

Eliza is a high school senior in the Bronx, New York. Originally published on Teaching Tolerance, and is reprinted by permission of the author.

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Sports Life in Silence

Chase Ross and his wife, Amy

The crowd is roaring, cheerleaders cheering, coaches are yelling and teammates are making play calls. As hearing impaired athletes, my sister and I did not necessarily hear all of this. Growing up in a small town atmosphere and loving sports, teammates and coaches found ways to communicate with us to ensure we were part of the team, part of the family, by making sure he/she was standing next to us when talking or giving us hand signals during play.

My sister and I were very fortunate to have a close, caring, understanding and loving family to help guide us through life. But they made sure we had to work for everything we earned and did not take anything else in life for granted, much less our hearing. My sister, who has cochlear implants, provided me with a great example of how not to let our hearing loss keep us from doing anything we dreamed. Growing up she was very active with sports. Even as she went on to college, she was a football cheerleader while earning her degree.

Growing up I had a strong passion for playing sports – football, basketball, baseball and track. Sometimes the sweat would get into my hearing aids causing them to not work correctly and I would still have to play parts of games without hearing – relying solely on reading lips and using hand signals that our team had put together for such cases. It was a challenge that my teammates had recognized. That is when you learn to connect with friends, family and teammates on a new level.

To help bridge that gap, last year I founded Sports for Sound, a non-profit entity designed to raise funds and help hearing impaired patients who need financial assistance with obtaining new hearing aids, molds, FM systems for the classrooms or whatever his/her needs may be. After making appointments with my audiologist and needing new hearing aids for the first time since I have been on my own, it hit me how costly they can be, even with insurance. This is what motivated me to want to help those who may need assistance.

To help better educate the participants with hearing and show them why hearing is truly important, participants in the running events must wear ear plugs. This helps the participants better understand what hearing impaired people go through and how much we need to rely on our other senses.

Our first year (2014) was dubbed a success raising over $23,000 and providing assistance to 10 applicants. In 2015, 2015 we raised $18,000 & we were able to provide new hearing aids to 8 recipients. Sports for Sound is having its 3rd annual event on May 21st, 2016 at the Eastern Ohio Sports Complex in Sherrodsville, OH. The event is held in May to coincide with “Better Hearing & Speech Month.” This year our event will feature a 5K obstacle run, 10K road run and 5K cross country walk. The event will also have food, raffles, silent auction and a Chinese auction.

Chase Ross is the founder of Sports for Sound. His goal is to grow SFS to help assist hearing impaired patients beyond its established location, Tuscarawas County, OH., all while giving participants the experience of being hearing impaired while participating in SFS events.

Hearing Loss vs. Dizziness: If I Could Choose!

By John V. Brigande, Ph.D.

I was about 9 when hearing loss in my left ear was first detected. The audiologist explained to me that as a result, I may not be able to hear birds singing as easily, and that I may need to concentrate more to understand words starting with “sh,” “k,” or “t.” Sensing my alarm, she tried to reassure me by saying it was unlikely that the hearing loss would affect both ears, and if it did, it would likely not be to the same extent.

Managing the loss of a primary sense is all about adaptation. In grade school, I simply tilted my right ear toward sound sources. Over time my hearing loss became bilateral and progressive, and its cause remains unknown. In graduate school I began using hearing aids and later received a cochlear implant in my left ear. I continue to use a hearing aid in my right ear, and thankfully for the past eight years, my hearing has remained stable, if stably poor.

I have always compensated. At Boston College (where I received my undergraduate, Master’s, and Ph.D., all in the biological sciences) I sat in the front seat of my classes, as close to the speaker as possible. I asked my professors and classmates to face me when they spoke so I could use visual cues to enhance oral comprehension. During postdoctoral training in auditory neuroscience at Purdue University, I was given complimentary assistive listening technology upon my arrival to the lab.

While I do not consider my hearing loss to be a profound limitation personally or professionally, it has certainly sculpted my career path. When picking my area of scientific focus, I settled on a career in auditory neuroscience to better understand hearing loss.

I also reasoned that the auditory research conferences and meetings I’d be attending would likely have assistive listening technology to allow me to participate more fully. I have benefited immeasurably from the scientific community that makes up the Association for Research in Otolaryngology, whose meetings have world-class assistive listening technologies and interpreter services plus overwhelming support of members who have hearing loss.

As I entered my 40s, I experienced vertigo for the first time. The clinical data do not fit with a diagnosis of Ménière’s disease, and the link between my vertigo and hearing loss is unclear.

When I have an acute attack of dizziness, my visual field scrolls from right to left very quickly so that I must close my eyes to avoid profound motion sickness and vomiting. I must lie down until the dizziness subsides, which is usually 12 to 16 hours. I honestly cannot do anything—I can only hope to fall asleep quickly.

Vertigo is a profound limitation for me. With no disrespect or insensitivity intended toward the hearing impaired community—of which I am a passionate member—I would take hearing loss over vertigo in a heartbeat. Dizziness incapacitates me, and I cannot be an effective researcher, educator, husband, or father. Some people perceive an aura before their dizziness occurs, but I do not get any advance warning. Unlike hearing loss, I cannot manage my dizziness—it takes hold and lets go when it wants to.

I recall one episode especially vividly. I was invited to give a seminar at the National Institute on Deafness and Other Disorders (NIDCD) and experienced a severe attack just hours before my flight. Vertigo forced me to reschedule my visit, which was tremendously frustrating. That night, I slept in the bathroom (my best solution when vertigo hits). Vestibular (balance) dysfunction is quite simply a game changer.   

A satisfying part of my research involves trying to define treatments for hearing loss and dizziness. Usher syndrome is a condition combining hearing, balance, and vision disorders. In Usher syndrome type 1, infants are born deaf and have severe vestibular problems; vision abnormalities appear by around age 10. In working with a group of dedicated colleagues at various institutions, we have evidence that fetal administration of a drug in mice with Usher syndrome type 1 can prevent balance abnormalities.

As part of HHF’s Hearing Restoration Project (HRP) consortium, I have been working on testing gene candidates in mice for their ability to trigger hair cell regeneration. This research is exciting as it is leading the HRP into phase 2 of its strategic plan, with phase 3 involving further testing for drug therapies. The probability is that manipulating a single gene will not provide lasting hearing restoration, and that we will need to figure out how to manipulate multiple genes in concert to achieve the best therapeutic outcomes.
It is an exciting time to be a neuroscientist interested in trying to find ways to help patients with hearing loss and balance issues. I am hopeful that we will make progress in defining new ways to treat and even prevent vertigo in the near future and ultimately to discover a cure for hearing loss and tinnitus.

Hearing Restoration Project consortium member John V. Brigande, Ph.D., is a developmental neurobiologist at the Oregon Hearing Research Center. He also teaches in the Neuroscience Graduate Program and in the Program in Molecular and Cellular Biology at the Oregon Health & Science University.

Your financial support will help ensure we can continue this vital research in order to find a cure for hearing loss and tinnitus in our lifetime. Please donate today to fund the top scientific minds working collaboratively toward a common goal.For more information or to make a donation, email us at development@hhf.org. 

Your help provides hope.

Do You Hear That?

By Kailey McGarvey

Do you hear that?

Imagine hearing a high-pitched noise, constantly, throughout the day and night. It follows you everywhere. Silence is a luxury that does not exist.

This is tinnitus.

In 2011, I developed tinnitus in my right ear, after a head cold. I vaguely noticed it, and thought it was something that would go away after my body had fully recovered. After a few months, my doctor told me I was completely healthy. But why was I still hearing that annoying sound?

At this point, the ringing in my ear was so faint that I could only hear it in complete silence. It was just a mere annoyance that could be easily covered up by any other sound, so I didn’t take it too seriously. I had some ENT and neurological tests done just to be sure that the tinnitus wasn’t a symptom for something bigger, which it wasn’t. So it was never more than a mild concern—until I woke up one morning in 2013 with an even higher pitch ringing in my left ear.

This was solid proof that something was happening and that it had the potential to worsen. I went through a second round of ENT and neurological testing to check for new developments. The ringing had become louder and took more effort to ignore. Again, the tests showed nothing abnormal. This was good, but I was told nothing could be done about the distracting sounds in my ears.

My tinnitus began to consume a greater amount of my focus, my energy, and my thoughts. My anxiety skyrocketed with thoughts of how it could progress and what it would mean for me in the future.

During the summer of 2015, my tinnitus worsened, again. Listening to music is one of my favorite pastimes, but now I hear sounds of high-pitched feedback during certain chords in songs. This is particularly devastating—my tinnitus has distorted how I hear music. It was then that I made a decision: Since throwing my energy into finding answers from doctors was obviously not proving productive, what would be a better outlet?

After some brainstorming, I decided that my “outlet” would be fundraising for tinnitus. I have always been involved in community outreach, and have been working as a finance assistant for a congressman. This would be my opportunity to manage my own fundraiser, while raising funds for a cause very important to me. With my recent move to Long Beach, New York, I had access to a beautiful boardwalk. I decided the fundraiser would start in my back yard with snacks and drinks, and once everyone arrived we would walk the boardwalk.

I chose Hearing Health Foundation (HHF) because their focus is on research. Research is where we will find answers about hearing loss and tinnitus; research is what will move things along. We are so close to finding answers. Since tinnitus is an invisible condition and it does not directly affect your health, it has historically not been taken seriously, but it is (slowly) becoming a “mainstream” condition. I hope this will lead to more people taking an interest in funding tinnitus-focused research, such as the science that HHF is funding. Greater funding will help accelerate the pace toward a cure.

I was lucky—the Saturday of the fundraiser was a beautiful and warm October afternoon. I had set a goal of $1,000 and asked for $35 per person. Those who couldn’t make the fundraiser were asked to donate online. I ended up with 23 people in attendance and $1,120 in contributions. It ended up just being a fun social gathering of family and friends. Dollars for Decibels was a success! Not only was I able to raise money for the organization, but the fundraiser itself reinforced the extraordinary support system I am grateful to have around me.

In addition to fundraising, I can also use my time to educate others and help the tinnitus community as a whole, rather than just trying to find answers for myself. It is important to educate the younger generation about the harmfulness of noise. Hearing conditions and hearing loss are seen as “problems for old people”—but this simply isn’t true. Hearing loss and tinnitus can begin at a young age and when the cause is excessive noise, it is entirely preventable. I was just 20 when my hearing became noticeably affected.

It is tempting to search endlessly for some sort of miracle drug, or to feel discouraged when nothing seems to work. But remember that everybody has some issue, and if (loud) ringing in your ears is your biggest problem, perhaps you are lucky. There is no operation or amount of medicine that can provide the same relief as the support and love of friends and family.

The outreach and education among my friends is working. Just last week, one friend decided that we shouldn’t go to a certain bar because it is always “way too loud.”

Tinnitus and hearing loss can be debilitating. Still, as with all chronic conditions, there are good days and there are bad days, but there are always good days ahead.

Interested in hosting a fundraising event to benefit HHF?  

You're in luck! You can create a  giving page and help us raise funds to cure hearing loss and tinnitus.

Need some ideas?  See examples of past events and ideas for creating an event. There are many different ways to create your own fundraising event from golf outings and bake sales, to birthdays and weddings, to marathons and triathlons. Let your talents and interests lead you to your own fundraiser for HHF! No event is too large or small.

In three easy steps, you will be on your way:

1. Register

2. Create your Giving Page

3. Share with Family and Friends and ask for their support

Get Started!

Have questions or need help setting up your fundraiser?  Email fundraise@hhf.org or call (212) 257-6140.

Handicapable

By Kate Yandell

Dominic Pisano hadn’t even arrived on campus to start his freshman year at Johns Hopkins University when he got his first email from biomedical engineer Tilak Ratnanather. He had heard Pisano was deaf and wanted to meet with him. Ratnanather, who has been deaf since birth, showed up for the meeting accompanied by a second deaf student who would later become a doctor. “He was, like: ‘Here’s my deaf army,’” Pisano recalls.

Soon, Pisano, a soccer enthusiast from Ohio, was interpreting magnetic resonance imaging (MRI) in Ratnanather’s department. When Pisano decided he wanted to go to medical school, Ratnanather was ready to introduce him to his wide network of friends in the otolaryngology department at Hopkins. Pisano assisted in MRI research at Hopkins for a year before attending Tufts University School of Medicine in Boston.

“I’ll be honest with you, if it weren’t for Tilak I probably wouldn’t have gone to medical school,” says Pisano, now a resident in anesthesiology at Tufts Medical Center. “I probably wouldn’t have done biomedical engineering research. Most importantly, I probably wouldn’t have the kind of network I have.”

Photo: Tilak Ratnanather

Courtesy Johns Hopkins School of Medicine

It was this kind of service that won Ratnanather the Presidential Award for Excellence in Science, Mathematics, and Engineering Mentoring this past March. Over the years, Ratnanather has lobbied for better resources for deaf attendees at conferences, organized annual dinners for deaf researchers, helped award scholarships to hearing-impaired students through the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), and mentored more than a dozen hearing-impaired students.

“He’s by nature the most gregarious and extroverted individual,” says Howard Francis, a professor of otolaryngology at Hopkins who has known Ratnanather for 23 years. “He has a sense of mission and is committed to making it possible for others to achieve what he has achieved.”

“A lot of people have a hard time understanding him [due to his deafness-related difficulties with speech],” says Pisano, “but despite that, they still enjoy his company, and they want to be connected with him.”

Ratnanather was born in 1963 in Sri Lanka with profound hearing loss of unknown origin. His family moved to London when he was 18 months old, and he grew up wearing hearing aids and attending the Mary Hare School for Deaf Children.

Ratnanather’s parents, a pediatrician and a computer systems programmer, had high hopes for their son. “My father and I would talk about mathematics and would go through some problems at home,” he says. “I had an aptitude, and then, of course, I would go to the science museum and learn about famous mathematicians.” Ratnanather enrolled at University College London, where he met mathematician Keith Stewartson, who immediately made the young undergrad comfortable about his hearing loss and the assistive technologies he needed to use in the classroom. “I knew he would make my life easy,” says Ratnanather. “I didn’t have to worry about my deafness.”

Tragically, Stewartson died suddenly at the end of Ratnanather’s first year at university. But the young student forged ahead, and after doing some reading about Stewartson’s research on fluid dynamics, Ratnanather went on to study the subject in graduate school at the University of Oxford, receiving his D.Phil. in mathematics in 1989.

Up until that point, Ratnanather had only had occasional opportunities to learn about an area near to his heart: hearing research. This changed after he attended a research symposium at the 1990 AG Bell Convention in Washington, D.C. Fascinated by the work of William Brownell, Ratnanather approached the Johns Hopkins researcher after Brownell had given a talk about outer hair cell electromotility—the process by which these sensory cells shorten or lengthen in response to electrical impulses.

When outer hair cells change shape, they transmit mechanical force to the cochlea, amplifying the ear’s sensitivity to soft sounds at specific frequencies. Forces transmitted through pressurized fluids in outer hair cells make electromotility possible, explains Brownell, who is now at Baylor College of Medicine in Houston. He needed someone who could model the dynamics of fluid within these tiny spaces. “Tilak had the computational tools to begin to study this,” Brownell says.

Ratnanather began a postdoc in Brownell’s lab in 1991. During his postdoc, he realized he could bestow upon students the confidence his mentors fostered in him. The Internet helped him reach out to other deaf people through newsgroups. Lina Reiss, who had severe hearing loss by age 2, first met Ratnanather when she was an undergraduate at Princeton University and he replied to an online post in which she introduced herself to one of these newsgroups.

The daughter of two Ph.D.s, Reiss had always known that she wanted to go into the sciences. But she was not sure what career would be possible with her hearing loss. “I didn’t have any role models of what it was like to be a deaf faculty member,” she recalls. “Until I met [Tilak and some of his deaf friends], I couldn’t imagine becoming a professor.”

Ratnanather helped get Reiss a summer internship in the hearing-research lab of a colleague at Johns Hopkins, where she studied how neurons in the brain stem encode and process sound. Enthralled with the research, she went on to do her Ph.D. in biomedical engineering in the same lab. She is now an assistant professor at Oregon Health & Science University in Portland researching how hearing loss, hearing aids, and cochlear implants influence the way people perceive sound.

Ratnanather now primarily does brain-mapping research focused on understanding how brain structures are altered in people with diseases such as schizophrenia, Alzheimer’s, and bipolar disorder. But hearing science continues to influence his work. He has published several recent studies on fluid dynamics and hair cell function and has upcoming papers on imaging the auditory regions of the brain in deaf adults and babies.

And, spurred partly by his own cochlear implant surgery in 2012, Ratnanather has created an app for adults learning how to hear following the surgery. Called Speech Banana, the app is named after the banana-shaped region in an audiogram that contains human speech.

More than just providing professional connections, Ratnanather has influenced how his former students navigate the world. Being deaf can make it scary to think outside the box or challenge opinions, Pisano says.  Ratnanather encourages his mentees to keep an open mind and engage with others—hearing and nonhearing alike. “That helped shape my mentality about life in general today,” Pisano says.

Reprinted with permission. "Handicapable" originally appeared in the October 2015 issue of The Scientist, a special issue devoted to hearing research. The article can be accessed online here. See also The Scientist’s Facebook page, where this article generated many comments.

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Hearing Health Foundation is thrilled that Tilak Ratnanather, D.Phil., received this outstanding honor and recognition from the White House for his mentoring efforts. Ratnanather was a recipient of an Emerging Research Grant (ERG) in 1993, and has continued to champion HHF and its mission to prevent and cure hearing loss and tinnitus.

Dominic Pisano, M.D., who is quoted in this article, served on HHF’s inaugural National Junior Board (now known as HHF’s New York Council) in 2012. He has written about his decision to get a cochlear implant (CI) on our website and the tips and tricks he used to succeed in medical school in our magazine, and he appeared in an HHF public service announcement.

Also quoted in the article, Lina Reiss, Ph.D., was an ERG recipient in 2012 and 2013, and went on to win funding from the National Institute on Deafness and Other Communication and Disorders. She cowrote a piece about hybrid CIs and the way they make use of residual hearing ability. HHF congratulates all for their achievements!

Hearing Loss Stigma?

By Terry Golson

Forty years ago I was a teenager with a mild hearing loss. An audiologist offered to fit me with bulky, ugly hearing aids. I said No thanks. But my loss was progressive and in my mid-twenties I finally got a hearing aid. It was a large plastic shell that filled the ear. It was uncomfortable and whistled from feedback, but it enabled me to hear. I wore it.

I wore my hair long and covered the aids. They were ugly and I didn’t want to have to talk about my disability unless I brought it up first.

My hearing worsened so that even with aids I struggled. I was constantly challenged in how to function with it. I wasn’t embarrassed by my loss, and I didn’t believe that people would think less of me because of it, but that didn’t lessen how difficult it was to live with a hearing loss. I’d tell people that I had trouble hearing, but it’s actually quite difficult for people to change how they speak. Some would project better for a word or two, but then resort back to their quiet voices. Early on in my loss I heard well enough to fill in the blanks. But, as my hearing declined, I couldn’t catch up. I’d miss half a sentence and nod in agreement, or I’d think that I understood something, but later would find out that I’d misheard. Also, like many people with hearing loss, it was easier to talk rather than to listen and so I would dominate a conversation, or would come across as rude because I missed the verbal clues as to when to enter and to end an interaction.

I was self-aware enough to recognize that this was happening. Eventually, I no longer cared if people saw my aids, in fact, I hoped that if they did they would speak more clearly. I wore my hair short, but no one noticed the aids. My hearing loss continued to worsen. I switched to behind-the-ear devices.  My ability to engage in conversation declined. Work options shrunk. I felt socially inept, visibly I came across as incompetent because of missed communication. Whatever judgements people were making about me, it was because of the behavior that the hearing loss caused, not what they saw in my ears.  I became even more open about my hearing loss. I discovered that once others understood what I was coping with, that they were generous and helpful. It wasn’t what was in my ears that caused any stigma – it was when people didn’t know that the aids were there!

No one thought less of me because of the devices I wore. This is truer now than ever before. Look around – most people have some sort of electronics attached to their heads. I now have cochlear implants. I still have short hair. People rarely notice them, but if they do, they don’t know what they are. Once, a stranger asked me about my “telephone.” I’ve had teenagers tell me that my CIs are really cool. The only people I’ve met who believe that there is a stigma to using hearing aids are the ones who wear them. A friend of mine has always hidden her disability because she worried that being open about it would impact on how people perceive her at her job. She’s a high-level manager at a world-renowned research lab. Recently a woman joined her team. At the first meeting this new hire announced that she wore hearing aids and there were times during communication that she would need help. No one blinked. These are people used to working with technology. They were interested and helpful. It took my friend aback. All of those years of struggling with her loss alone had been unnecessarily difficult.

I understand not wanting to show off one’s aids. I don’t want my hearing loss to be the first thing that one notices about me. Also, I’m vain enough to care that my CI’s are not beautiful. They’re the color of office furniture. But, there is hope. Another friend, Karen, recently upgraded her hearing aids to devices that are sleek and stylish. They are a vibrant blue to match her eyes. She says that her new aids are beautiful, and she’s right. Karen is 83 years old. Her hearing loss and her hearing aids have no stigma - not in her mind, and not to anyone around her. She’s a noted scientist and, because her devices enable her to stay in the hearing world, she continues to speak at conferences and is a mentor to many.

So let’s lay the idea of the stigma of wearing hearing aids to rest once and for all. It’s life without the aids that brings limitations. Now, if only my CIs were as pretty as Karen’s.

Terry Golson lives in a small town outside of Boston, Massachusetts. You can read about her work and her life at her website, HenCam.com. 

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Spotlight On: Andy Groves, Ph.D.

Andy Groves, Ph.D.

CURRENT INSTITUTION: 

Baylor College of Medicine, Houston, Texas

EDUCATION:

Undergraduate from the University of Cambridge

Ph.D. from the Ludwig Institute for Cancer Research, London

Postdoc at the California Institute of Technology 

This new feature aims to connect Hearing Health Foundation (HHF) supporters and constituents to its Hearing Restoration Project (HRP) consortium researchers. Spotlight On provides an opportunity to get to know the life and work of the leading researchers working collaboratively in pursuit of a cure for hearing loss and tinnitus. 

What is your area of focus?

I am a developmental biologist who uses the ear as a model system to understand the general problem of embryonic development—how do you form something very complicated from very simple beginnings. The inner ear is a tissue that receives extremely precise instructions to form just the right number of cells in the right place at the right time. My lab studies where the ear comes from embryonically, how the cochlea acquires its exquisite pattern, and why sensory hair cells are not replaced in mammals after damage.

Why did you decide to get in to scientific research?

I always enjoyed biology and chemistry as a kid and thought it would be more fun than studying medicine. I had a very enthusiastic high school biology teacher who loaned me books on biology and evolution, which made an enormous impression. When I was an undergraduate at Cambridge, I was lucky to have two professors who both won Nobel Prizes, and during my senior year I had the opportunity to do research with one of them. After that, scientific research seemed like the only game in town….

Why hearing research?

I started to study ear development as a postdoctoral fellow in the 1990s because it had received very little attention for decades. The ear appeals to my love of extremes in biology: It has one of the most elaborate three-dimensional structures of any organ; it possesses cells of astonishing mechanical sensitivity; and it can detect sounds over a trillion-fold power range. It is also remarkable to think that our entire auditory experience—conversation, music, the natural world—is captured by just a few thousand sensory cells in each ear!

What is the most exciting part of your research?

Experiments can take months or years to carry out. But every now and then you find something new, and the thrill of realizing that you have found out something that no one else in the world knows about is quite addictive.

What do you enjoy doing when you’re not in the lab?

I am a huge music fan and have a large CD collection. Right now my playlist includes Beethoven sonatas played on a fortepiano, some rare Miles Davis live concerts from 1965, and Howlin’ Wolf albums. As a grad student, I sang at Cambridge and with the London Philharmonic Orchestra. I also love reading. Despite living in the U.S. for over two decades, I know very little about its history, so I have been trying to educate myself about the Civil War Era. I just finished reading “The Half Has Never Been Told” by Edward Baptist.

What is a memorable moment from your career?

For me, it is the “firsts”—seeing students or postdocs publish their first paper or when someone in my lab gets their first academic position. The nature of science means that most of what is discovered will become obsolete or surpassed, but the achievements and careers of the people who have come through the lab will hopefully last for much longer.

If you weren’t a scientist, what would you have done?

To be honest, I never had a “plan B.” I love teaching, and so if I had to give up research, it might be nice to teach biology to undergraduates.

Hearing Restoration Project

What has been a highlight from the HRP consortium collaboration?

The biggest help has been having collaborators on hand to do experiments that are outside the scope of my own lab. We recently published a paper with another HRP researcher, Stefan Heller, Ph.D., at Stanford, where he helped us analyze gene expression of single cells in the cochlea. We showed that blocking the Notch pathway could cause new hair cells to form in very young animals, but that this approach stops working as animals get older. The explosion of new technology and techniques means it is harder to do all the experiments you want in your own lab—so collaboration is key.

What do you hope to have happen with the HRP over the next year, two years, five years?

I hope we can begin a large-scale testing of candidate drugs or gene manipulations in the next two years. This initial screening will likely be in cell culture systems or in the zebrafish system that some members of the HRP helped to pioneer. In five years, I hope we have lead compounds that have been validated independently in several HRP labs.

What is needed to help make HRP goals happen?

Frankly, funding to keep our research moving forward. A postdoctoral fellow with five to six years of training starts out on a modest salary of about $45,000, plus $12,000 in benefits. So that’s $57,000 before they even pick up a test tube in the lab. Each person will typically use between $15,000-$20,000 a year in supplies and chemicals. Simply maintaining a single cage of mice for one year costs $210, and my lab can use between 300-500 cages of mice for our experiments! HHF and its donors have been extremely generous in their support, however with additional funding the output from the consortium could be significantly greater and accelerate the pace to a cure.

Which scientist or mentor was the most inspirational?

My two postdoctoral mentors at Caltech, David Anderson and Marianne Bronner, were both instrumental in making me the scientist I am today. As I was moving into the ear field, I was also lucky to meet Ed Rubel while he was on a sabbatical at Caltech and now as a fellow member of the HRP. More broadly, my two scientific heroes are Seymour Benzer and Francis Crick. Both were gifted scientists who laid the foundations of modern biology and were able to make seminal contributions to every field they worked in, from developmental and molecular biology to the study of aging, behavior, and consciousness. 

Your financial support will help ensure we can continue this vital research in order to find a cure for hearing loss and tinnitus in our lifetime. Please donate today to fund the top scientific minds working collaboratively toward a common goal. For more information or to make a donation, email us at info@hhf.org.

Your help provides hope.

Go for It, Live It, Experience It

By Nina Poersch

Have you ever wanted to do something so badly, fulfilling a dream, but the next minute you’re terrified? Then back to feeling like you’re ready, but then again thinking, “What have I gotten myself into?” And finally settling with: If I don’t do this now, I may never get a chance again, so you go for it.

That was me when I was chosen for Season 30 of the reality TV show “Survivor.”

I was not the first person with a disability on the show. But then, being deaf and a cochlear implant recipient wasn’t always who I was. I was born with typical hearing and didn’t lose it until I was 44. I call it a “gradual sudden hearing loss” that took place over the span of about five years. The doctors are not sure why I lost my hearing. All I wanted was to get my hearing back.

After two months of wearing hearing aids that were not helping, I knew I wanted cochlear implants and got one in my right ear. I am not one to sit back and wonder why something has happened to me, or to worry about the future, but instead I embraced my situation and began a journey of educating others about cochlear implants. It’s what I talk about with every new person I meet. I also volunteer for Cochlear Americas as a mentor with the company.

After the implant, I didn’t need a captioned phone anymore. I also threw away my note pad, which had become my ears for people to write on when I couldn’t understand what they were saying to me. Driving became less horrifying. It’s amazing what you hear in your everyday life that you didn’t realize you were hearing.

But all of this didn’t come easily. I struggled with my family. It took time for everyone in my life to understand that while I do use hearing technology, there are limitations to how well I hear.

For six years I only had one implant. It wasn’t until I was called for a possible chance to be on “Survivor” that I considered going bilateral. It was a definite life-changer and I still kick myself for waiting so long.

I’m not sure whether these challenges prepared me for “Survivor,” but I believe everything happens for a reason. “Survivor” is very much a social game, one that I could have mastered before I lost my hearing. Even with cochlear implants, people with hearing loss don’t always catch everything and in the game, you can’t always ask people to repeat themselves. Nighttime was especially hard because I had to take off my sound processor.

“Survivor” finished airing in May 2015. Looking back, I know that being on the show was a learning experience as well as a teaching experience.

I learned that not everyone knows how to react to someone who has hearing loss. It can make people feel uneasy and create misunderstandings. When I look in the mirror, I don’t see a person who is deaf, or a person who wears cochlear implants. People I meet don’t see that either. They just need to be taught how I hear and how to talk to me—and that it’s okay. It’s very simple and I find most people are very interested.

Playing the game gave me insight and a voice to teach people what it was like for me to lose my hearing and what it means to have a cochlear implant. The challenges on the show that I participated in were not ones that required a lot of hearing, but I felt 100 percent confident that my implants would not have failed me had I had the chance to compete in more challenges. Instead, because of a combination of reasons—my hearing loss, my age, maybe being in the wrong tribe—I was voted off on day eight.

“Survivor” remains one of the most amazing things I have ever done. But it’s not the only thing. The biggest lesson I have learned since losing my hearing is to never let your hearing loss hold you back. Always go for your dreams. And remember that going for your dreams doesn’t always mean that you’ll succeed, but if you don’t try then you’ve failed yourself. In the end you’ll be happy that you did and you’ll find that you’ve inspired others to go for their dreams.

My motto is “go for it, live it, experience it.” It’s how I live my life and it has never failed me.

Nina Poersch lives in California. For more, see ninapoersch.com.

Have a story like Nina's that your would like to share? If so, please email info@hhf.org!