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! 

Noise Annoys

By Kathi Mestayer

There I was, pumping gas into my car outside a convenience store, lost in thought. Then, the harsh yammering started. “Come inside for pizza and chicken wings! You can pick up candy and evil-carb junk food! Diet soda for a caffeine fix! Whaddya waiting for?”

The moot mute button

It was hard to pinpoint the noise at first, since I have an asymmetrical hearing loss. But I quickly located the source… a speaker on the gas pump. It had a mutilated “MUTE” button on the right side, which looked like it had been pressed about a hundred thousand times. So I optimistically joined the ghosts of muters past, pressing hard, harder, again, one more time, trying to make it shut up. No dice.

My peace of mind had been hijacked! If I’d had the option of swiping my card again to make it stop, I would have!

I glanced around, stressed, helpless, and furious. I got into my car, opened the glove box hoping for an ice pick to drive into the heart of the speaker, and saw a tube of sunscreen. As I headed back to the pump, my brain worked out a plan:

“Squirt the sunscreen into the speaker!”

“But they can see you from inside the convenience store! You’ll get arrested!”

“Actually, that could be an interesting adventure. Imagine the headlines!

‘Woman arrested for trying to get silence a gas-station speaker.’”

I could blog about it!

So, I took that tube of sunscreen, aimed it into the middle of the speaker, and squeezed until it was empty. Haha! The speaker was still shouting at me, but I could picture the sunscreen working its way into the speaker, choking it into silence.

Everybody Hates Noise!

When I emailed Seth Horowitz, author of “The Universal Sense: How Hearing Shapes the Mind,” about my ice pick idea, he replied that it would have been a waste of a perfectly good ice pick.

I had to agree. In his book, Horowitz writes, “The targeted use [of noise], from louder ads to deafening store music, is an important and often misused sales and marketing tool.” It can backfire, creating strong negative impressions of the business, product, or space. In fact, the only time I ever visited that gas station again was to take the photo for this article. And I didn’t buy any gas.

And sudden, loud, unexpected noises are likely to cause a hardwired stress response in our brains. In a recent essay in The New York Times, “The Cost of Paying Attention,” Matthew B. Crawford asks himself, from the noisy chaos of an airport, “Why am I so angry?”

Volume Optional

Noise doesn’t have to be loud to be disconcerting. Last year, in my art class, two fellow students were chatting quietly at the next easel. I couldn’t make out what they were saying, but they were just close enough, and just audible enough, that my brain would not quit trying. My brain, which often gives me feedback in this kind of situation, said, “You sure you want me to give up? It might be something interesting! I know I’m going to get it in the next couple of words!”

I was just starting to feel the frustration of trying, and failing, to understand the conversation, as I turned off my hearing aids. My own personal “mute” button.

There’s More of Us Out There

Lots of smart people are recognizing public-space noise, and attention piracy, as a real problem. In “Ambient Commons: Attention in the Age of Embodied Information,” author Malcolm McCullough writes, “Silence remains necessary for individual and especially cultural sanity. This is why modern cities enforce noise ordinances. You have a right to free speech, but not to amplify it from the rooftops all night, as if the air were an inconsequential void.”

And in his book, “The Unwanted Sound of Everything We Want,” author Garret Keizer chimes in: “In the end, after all the physicists, musicologists, and social theorists have had their say, there are only two kinds of human noise in the world: the noise that says, ‘The world is mine,’ and the noise that says, ‘It’s my world too.’ We need to quiet the first and make more of the second.”

And those who don’t take note of those wise words could end up with sunscreen in their speakers.

This is adapted from Hearing Health magazine staff writer Kathi Mestayer’s work on BeaconReader.com. 

New Beginnings

By Margaret

Like many of you, after a fun-filled, active summer, my children are looking forward to their first day of school. With my first child, now entering the 1st grade, things were pretty seamless when she started big girl school.

This year my second child is starting Pre-K and while I have the same excitement (and anxiousness), I also have an extra set of challenges to prepare for; Emmy has hearing loss and will be in a mainstream classroom.

I compiled the below list for how to handle the beginning of the school year for parents of children with hearing loss. Some are my ideas and others were passed on from other parents. I hope by sharing this list I can help anyone else who has a child with hearing that is starting school.

1. Speak Up: Before the school year begins, schedule meetings with teachers and administrators to discuss accommodations, such as classroom seating arraignments, note-taker services, in-class participation (i.e. repeating an answer of a classmate seated behind your child that s/he may not hear), and handling emergency situations, such as fire drills. If your child has an FM unit, this is a great time to teach teachers how to use it. It's just as important for them to know how to turn it on, as well as turn it off when they take bathroom breaks!

2. Teacher-Student Communications: It's important that your child feels comfortable and encouraged to communicate with their teachers when they feel they missed something said. Include your child in these meetings to help build that relationship, and as they get older, your child likely will have the best advice (and stories) to share.

3. Reinforce Good Practices, Politely: Kindly ask teachers to face your child when addressing the classroom. When writing on the chalkboard and talking at the same time, the teacher's voice is bouncing off the board instead of going forward, making it harder for your child to hear as well as lip-read.

4. Buddies, Not Bullies: Bullying should never be tolerated, however it sometimes comes up. Talk with teachers and administrators about how to mitigate tough situations and protect your child, without having your child feeling victimized and ostracized for having hearing loss.

5. Practice Makes Perfect: Develop a scripted answer for your child (and their siblings) when asked about his/her hearing aids and hearing loss. Not only does it put the parents at ease, but helps your child confidently self-advocate.

6. Show and Tell:  If your child mentions s/he received a lot of questions during the first week of school, ask their teacher to take five minutes in the beginning of class for your child to "show and tell" their hearing aids. Not only does it promote tolerance, but it teaches your child public speaking skills. 

If you have additional tips and suggestions for managing the start of school, please add share them in the comment box below or by e-mailing us at info@hhf.org.

How Can You Change the World, If You Can't Hear It?

By Zeid Malas

How many times have you nodded your head in response to someone whose words you couldn't really hear, no matter how many times they repeated themselves?

How many times have you felt complete isolation when you were among a group of people, whether it was hanging out with friends or a family dinner? Not because you were using your phone or social media, but because you couldn't really keep up with the countless conversations happening at once.

How many times did you do your best to avoid the phone, preferring to text because you were afraid you wouldn't hear the person calling or that you would miss important information being said? Do you know of the pain felt when someone you care about wants to talk to you through Skype, but you just can’t follow the conversation?

What about YouTube, music, lectures, and videos? Such as when you fail to understand what's being said because you can’t hear it and no captions are provided.

How many times have you hesitated or been afraid to ask someone to repeat himself because you felt bad for the times he needed you to listen and understand him? Or maybe because it would change how people thought of you?

I mean every word when I say "I feel you."

Age 11 after taking medicine

When I was 9 years old I woke up one morning only to realize that I had lost 99% of my hearing in both ears for no reason. It wasn't hereditary, it wasn't physiological—it just happened. What did I do? There wasn't really anything I could do... I just accepted it. I taught myself to read lips and body language in order to understand what someone would be trying to say. It was my primary way of communication and with it I was able to finish high school and reach college.

Sadly, my weakest point is electronic devices such as speakers, the TV, the phone… etc. I can hardly make any sense of what comes out of them which makes it very painful not being able to hear and understand someone when they call me. Especially when I'm an online gamer and my games sometimes require me to Skype with my group to coordinate our strategy, about which I end up being clueless.

I've dealt with hearing loss for 10 years now, until last May when I had surgery on my right ear to get a cochlear implant. I made a documentary showing my last days with hearing loss, the surgery, and finally my first moments/days after.

Even though this has been a challenge and complication in life, it made me different from the rest of my peers. It made me someone you remember, someone who my professors will mark as present without the need to shout my name, someone patient and full of empathy, someone who continually works hard to provide the best results because that’s the only way I know how to live.

At age 18

I know many think I've been suffering because of this, and that's what I thought for a while, too. Until I realized that—weirdly enough—it's actually a blessing that I lost my hearing, for it's what made me so different from most people my age. I'm not saying I'm better, I'm just saying I don't waste time relating music to my life, making sure everyone knows what I’ve had for breakfast each day, asking everyone to share and like my profile picture on Facebook, using countless hashtags on Instagram to get followers, retweeting every celebrity tweet on Twitter, or building a story every day on Snapchat.

Because of my situation, I've learned to observe, learn, and understand solely using bodily cues, and to adapt to any difficult situation or people I may encounter. I do my best to make the best out of any situation. I'm not saying I'm Sherlock Holmes... I'm simply saying I'm Zeid Malas!

I made my disability my greatest ability... What are you going to do with yours?

Les Paul, Wizard of Waukesha

By Sue Baker

Les Paul often said he learned everything he needed to know while growing up in Waukesha. I met Les Paul when I worked at the Waukesha County Museum, and wanted to put together an exhibit about him. We became good friends for what would be the last 10 years of his life (he died in 2009), and these are just some of the stories he told me.

Lester Polsfuss was born June 9, 1915, in Waukesha, Wisconsin, a city 20 miles west of Milwaukee, to a family with strong German roots. From the time he was a preschooler, Les was encouraged by his mother, Evelyn, to entertain. Les recounted how when he was 5 years old the Rotarians would lift him to a tabletop during their meetings so he could sing for them. By the time he was 8, Les disassembled a harmonica he was given to see how it worked. After reassembling it, he filled the family home with the sounds of endless harmonica practicing.

Radio was brand new when Les was growing up and he couldn’t get enough of listening to the guitar-playing country singers. When the singers came to town, Evelyn took Les to see them perform. Les wanted to be just like the guitar player Pie Plant Pete, and when the performer came to Waukesha not only was Les in the audience, he was dressed just like Pie Plant Pete, who performed in “Showboat” in a sailor suit. In fact, years later Les changed his performance name from Red Hot Red to Rhubarb Red. (“Pie plant” is another name for rhubarb.)

But playing his guitar and harmonica, and singing and telling jokes, was not enough for Rhubarb Red. As a teen, Les loved his guitar but he was sure it could sound better. After inventing a harmonica holder so his hands were free, Les pondered how to improve his guitar so he could hear just the vibration of the strings. So Les stuffed socks, rags, and a tablecloth inside the guitar. The sound was different but not quite what he wanted. Next, he filled the guitar with plaster of Paris—and that was the end of his guitar. 

Les wanted the densest material he could find to build a guitar so that only the strings would vibrate. He tried a two-foot piece of discarded iron train rail. He stretched a single guitar string down the length of the rail and plucked it. What sustain! It was crisp and just the string vibrated and it vibrated a long time. It was exactly what he wanted. He ran to share his great discovery with his mother. The usually supportive Evelyn looked at her son and said, “The day you see a cowboy riding a horse with a piece of rail…” Les knew she was right, but he also knew he had the beginning of something big.

Teenage Les was playing all over Waukesha and the surrounding area. He wanted to hear what his audiences were hearing so he built a disk-recording machine using a flywheel from his dad’s car dealership, a rubber belt from his dentist, and aluminum disks for recording. By now, Les was performing on the radio and his mother would capture his performances on his recording machine. 

Just outside of Waukesha was Beekman’s Barbeque, a popular destination. Les became a regular, playing for tips. Les was constantly honing his guitar playing. He built his own amplifier using parts of his mother’s telephone and radio. When someone in the back said they couldn’t hear his guitar, Les created his first electric guitar with parts from the family’s phonograph and another radio.

In the mid-1930s Les was playing country (hillbilly) music on Chicago radio stations as Rhubarb Red. He spent his nights learning jazz at clubs in Chicago and soon was performing with the musicians. It was in Chicago that he took the name Les Paul when he played jazz.

As a teen, Les played at Waukesha’s band shell, now known as the Les Paul Performance Center. It is being renovated in time for the centennial anniversary of his birthday this June 9.

Learn more about the legendary Les Paul and the launch of the Les Paul Ambassador program, a partnership with Hearing Health Foundation to spread the message of hearing protection. The Les Paul Ambassdaors are guitarist Lou Pallo, saxophonist Chris Potter, jazz pianist John Colianni, and DJ and composer Chill Kechil who was in our magazine as well as in our blog. For the full list of events to celebrate Les Paul’s 100th birthday, see les-paul.com.

Sue Baker is the program director at the Les Paul Foundation. 

Hearing Makes Me Happy!

By Alex Mussomeli

By all accounts Alex Mussomeli is a typical elementary school kid; he likes art, music, sports, cooking, and video games. But what is phenomenal about Alex is how much he is comfortable with and unfazed by his hearing loss, and also how much, for a 10-year-old, he understands the technology that helps him to hear. Diagnosed with sensorineural hearing loss, Alex was fitted with hearing aids in both ears at age 3 months, and when he was 3 years old, he got a cochlear implant for his right ear. He continues to use both devices.

When his fourth grade teacher asked her students to write on a topic they know a lot about, Alex chose hearing loss and his hearing devices. The paper impressed the hearing-speech pathologist at school so much that it was shared on Speech4Hearing.com, a website that offers speech advice for parents of children with hearing loss. 

It also impressed us at Hearing Health Foundation (HHF). Here are some excerpts:

“There are two ways to help people with hearing loss hear,” Alex wrote. “One is a common way, a hearing aid, and the other way is not as common but is getting more common every day, which is a cochlear implant. I have both.”

“The reason people might need to get a cochlear implant is that they might not hear. They could be deaf or have hearing loss. The surgery of getting an implant can be a big decision. First the nurses give the patient sleeping medicine. Then, the surgeon drills into the skull. Next, the surgeon puts in a magnet. After the surgery you have to wait one month for the head to heal from the surgery.”

Once the healing period is over, the implant is turned on and it is programmed, or mapped, to fit the specific hearing requirements of the patient, and then the brain has to learn to process the sounds that the implant picks up and delivers directly to the brain via the auditory nerve. Nada Alsaigh, Alex’s mother, says Alex’s young age worked in his favor. “We were very lucky,” she says. “He was very fast learning how to use the implant to hear.”

“The way you hear with a hearing aid is like a first aid kit. The hearing aid assists the person in hearing,” Alex wrote in his paper. “An implant is better than a hearing aid because you can hear better with it. The reason is that the implant has a computer like processor that sends the sound through the nerve to the brain.”

Alex and his brother Joe, who is 12, are incredibly close. “We face challenges and we try to overcome them. This was a learning experience for all of us and made Joe more mature at a younger age. Joe is just a loving and supportive brother,” Nada Alsaigh says of Joe. The family treats Alex’s hearing loss as a part of who he is without defining who he is.

While thankful for existing technology, the family is also committed to helping HHF and its Hearing Restoration Project (HRP) find a cure for hearing loss and tinnitus. The HRP is on track to determine how to regenerate the inner ear sensory cells that, when missing or damaged, lead to hearing loss. The promise of a biologic cure for hearing loss could potentially remove the issues of adapting to hardware for Alex and the 50 million other adults and children in the U.S. who have hearing loss.

Smart and thriving, Alex realizes he is fortunate:

"Hearing makes me happy!” Alex says. “I am grateful that my parents got me a hearing aid and a cochlear implant. Someday, I believe that we will find a cure to have hearing cells come back to life! We can't give up hope! Hearing Health Foundation can help us find the cure!"

Alex's paper on hearing loss is availible in full, here.

Imagine...

By Kori Linae Carothers

Imagine for a moment that someone says to you, “Because you have a partial hearing loss, you cannot be a musician.” That happened to me. My name is Kori Linae Carothers and I am a concert pianist and composer. I was born with a hearing loss in my left ear—at least, that is what the doctors always told my parents.

When my parents and I found out I had a hearing loss, it wasn’t a big deal since I didn’t feel any different. I could hear with my right ear. I had a slight slur in my speech but other than that, I felt like everyone else! I loved to dance, sing, talk, dream, and listen to music. Just like most kids my age, I was busy and lived life with gusto.

My love for life changed once kids realized I could not hear as well as they did. Partial hearing was a challenge to me growing up because I had to sit up front in the classroom to hear my teachers. When kids and adults found out about my hearing loss, the teasing began. My peers called me names like “deafy,” and more. What hurt the most was when people laughed at me when I did not get an answer right because I did not hear the question properly. My answers were often out of context.

When I told one of my music teachers in grade school I wanted to be a pianist, she laughed at me, telling me I didn’t have the hearing for it. What? Never tell me I can’t do something, because baby, I will prove you wrong! When I look back on those days I realize that while some of the teasing was cruel, I became a musician and found my true calling: composing and playing the piano.

Skipping forward many years when I got married, I gave up my music to be a wife and mom, but when my husband realized that music is such an essential part of who I am, he encouraged me to pursue it and I have since released four albums. My fifth album, “Fire in the Rainstorm,” is my first solo piano album, while the other four albums are electronic and acoustic albums.

I remember that my first live experience with other musicians was difficult, as I needed to wear in-ear monitoring ear buds in ears, including in my right (hearing) ear. At one of our rehearsals, when I mentioned how difficult it was for me to hear what the other musicians were doing, my friend turned to me and said, “You don’t have to do this.” Well, again don’t ever tell me what to do! I bought an Audio-Technica in-ear monitoring system, and VOILA, problem solved!

While I fully accept my hearing loss, I’d be lying if I didn’t admit being a pianist would be easier with full hearing. I have tried wearing a hearing aid, but with my type of hearing loss, it did not work for me. Recently I wondered if there are any organizations that are researching hearing loss, and what they were doing with that research, as I would love to one day benefit from a cure. With the help of a friend, I learned of Hearing Health Foundation. I was SO impressed with the mission: to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. This made me SO happy and I knew right away that I wanted them to be recipients of my PledgeMusic Campaign for “Fire in the Rainstorm,” and I will also be donating proceeds from the sales from the album.

I am grateful for the folks at HHF and for the hope they provide me and others with hearing loss. I know they will continue their groundbreaking research, but not without the help of you and me. I ask you to join me on the journey to spread awareness, promote hearing health, and contribute to their mission so HHF can continue their quest to prevent and cure hearing loss and other hearing disorders.

Feel the fire! Visit Kori on the web. Her latest album is also available for purchase on iTunes.