Things to Know About Hearing Loss From the Perspective of the Communication Partner.

People who have hearing loss are much more likely to have balance disorders, and vice versa. This is mainly because the primary organs for hearing and balance are in the inner ear, and they share similar biological and physiological features. This also means solutions we develop have the potential to benefit both systems.

are linear. In these organs, hair bundles are embedded in a membrane that is overlayed by thousands of tiny ear stones, called otoconia. When we move our head in one direction, the otoconia, which are relatively heavy, lag behind. When we tip our heads, the otoconia are pulled down by gravity. This causes the hair bundle to bend, which triggers the vestibular branch of the eighth cranial nerve to send signals to the brain.

The saccule and utricle are located at right angles to each other, so they’re more sensitive to different directions of head motion. The utricle is more responsive to head tilts and sideways motions, while the saccule strongly senses motion that is up and down or forward and backward.

The three cristae sense angular accelerations (rotations) of the head. The hair cells in the cristae are located inside the organ in a sac, which is called an ampulla, that sits at the end of each curved semicircular canal. The cristae sense head rotations when the hair cells are stimulated by small movements of fluid in the semicircular canals that occur when the head accelerates in a specific plane.

When the head rotates in one direction, it will stimulate transient fluid motions in the opposite direction. This fluid movement stimulates the hair bundles to bend, exciting the hair cells and the nerves as well.

In this way, each of these five balance organs has different functions, sensing head motions in various directions. The brain receives information from them and compiles it all into a bigger picture. Just as both ears are important for hearing, the brain requires information from both ears to optimally understand how we are oriented in space and how we are moving.

The primary organs for hearing and balance are located in the inner ear, as shown in this detailed view (above) of the inset (top). Also, in this Creative Commons image the semicircular canals are labeled semicircular ducts, which they are also called.

James Phillips, Ph.D., and Jennifer Stone, Ph.D., study the vestibular system at the University of Washington.

A Shared Origin

The vestibular and auditory organs share a common embryonic origin. Anything that interrupts that development can very well affect both systems, depending on when the change arises. A single gene mutation, for example, may disrupt development of both sensory systems and affect both balance and hearing.

Vestibular and auditory senses rely on similar sensorineural elements. These are hair cells, which sense tiny changes in bundle position and transduce them into electrochemical signals, and nerves, which receive the hair cell signals and transmit them to the brain.

Another important cell type is present in both systems: the supporting cells. These cells provide structural support to the epithelia and regulate the chemical environment of the sensory organs. Supporting cells also have the potential to form new hair cells after damage, or what we call hair cell regeneration.

Environmental factors can injure sensorineural elements in both systems. Ototoxic drugs—including antibiotics like gentamicin and streptomycin—can kill both vestibular and auditory hair cells. Antitumor drugs such as cisplatin may also damage supporting cells and nerve cells.

We are all well aware that exposure to prolonged or intense noise causes hearing damage. There is emerging evidence that these sorts of stimuli may also cause damage to the vestibular organs, particularly to the sensory nerve endings.

In the same way that cellular structure and function are similar across both sensory systems, the potential for physical damage is also shared. The vestibular and auditory branches of the eighth nerve carry information from each set of sensory organs to the brain. These nerves travel together through the temporal bone, so any physical disruption, such as a tumor, can affect both hearing and balance.

Researchers and clinicians have identified a number of other factors that may lead to measurable losses in balance and hearing function, including microbial infections like CMV (cytomegalovirus), Epstein-Barr virus, and meningitis. We also note a similar decline in function in relation to aging.

What About Regeneration?

No mammals can regenerate auditory hair cells in maturity. They may do so when they’re very young, but once they’ve matured, there’s very little capacity for auditory hair cell regeneration.

In a seminal 1993 study, Andrew Forge, Ph.D., and colleagues used gentamicin to damage hair cells in young adult guinea pigs. Forge observed

We and others in the scientific community believe we will figure out how to fully regenerate vestibular hair cells before determining how to replace auditory cells. The power is having a system that regenerates a little bit—one that can be augmented. It’s easier to rev up a naturally occurring process than to jumpstart something that’s completely stalled. However, information gleaned from investigators of the injured auditory system will no doubt influence studies in the vestibular system. It’s the cross-fertilization of ideas and scientific approaches that lend synergy and momentum to inner ear research.

significant damage to the hair cells in the vestibular organ after just a couple of weeks.

But about eight to 12 weeks later, he saw that some of these hair cells had been replaced, indicating that there was some capacity for regeneration. Forge and colleagues were understandably excited to find this potential at all in an adult mammal.

Subsequent studies from Forge’s lab and others, based on data from biopsies and autopsies, showed that humans may also be able to regenerate some vestibular hair cells. This is broadly significant because even the small natural capacity for regeneration in the vestibular organ provides an opportunity to study how this process is regulated in a system that is incredibly similar to the auditory system.

About 10 years ago, my lab switched from studying the hearing organ to the vestibular organ because of the potential that the vestibular system offers. Several other research groups continue to examine how the auditory organ responds to damage to identify the factors that block regeneration there.

We and others in the scientific community believe we will figure out how to fully regenerate vestibular hair cells before determining how to replace auditory cells. The power is having a system that regenerates a little bit—one that can be augmented. It’s easier to rev up a naturally occurring process than to jump-start something that’s completely stalled. However, information gleaned from investigators of the injured auditory system will no doubt influence studies in the vestibular system. It’s the cross-fertilization of ideas and scientific approaches that lend synergy and momentum to inner ear research.

It is important to keep in mind that the cochlea has inner and outer hair cells, and they are very distinct from each other and distinct from vestibular hair cells. The vestibular organs have type I and type II hair cells, which likely have unique functions. Understanding how these specific cell types can be regenerated and how they can become incorporated into the respective sensory system poses a unique challenge.

We Need to Know More

There is still so much we don’t know about the vestibular system. We need to learn a lot more before we can develop new ways to treat vestibular disorders.

More research is needed on critical topics, including: basic biology (how the vestibular system develops, functions, and degenerates); diagnostics (genetic testing, inner ear imaging, and tests of the vestibular function); preventing ototoxicity and other forms of damage; and

restoring function to the injured system, perhaps through stem cells, gene therapy, the delivery of pharmaceutical agents directly into the ear, and/or vestibular implants. Understanding these aspects of the vestibular system will provide important insights in how to rebuild the auditory system after injury as well.

What’s the best way to promote vestibular research? We need to fund more projects on the vestibular and auditory systems. We need to recruit more people into the field. One way to do that is through Hearing Health Foundation (HHF)’s Emerging Research Grants program, which provides more training to young investigators and may stimulate crossover from other disciplines.

We can also take novel approaches to problem solving, such as HHF’s Hearing Restoration Project’s consortium research model, which promotes deep collaboration and open, rapid data sharing. We can leverage insights and technology from vestibular and auditory research to cross-foster ideas and approaches.

One of the most exciting aspects of research like that performed by HHF-funded scientists and their colleagues is the leveraging effect built right into the work itself: Each step forward is a move in the right direction in understanding and treating disorders in not just one but two systems that are so critical to quality of life.

Jennifer Stone, Ph.D., a member of HHF’s Hearing Restoration Project, is a research professor in the University of Washington’s department of otolaryngology–head and neck surgery, where she is also the director of research. She is a 1995, 1996, and 2000 Emerging Research Grants alumna.

To view the captioned webinar recording “One Ear, Two Systems,” which this story is based on, see hhf.org/webinar. For references, see hhf.org/winter2022-references.

Balance Conditions:

A Primer By James Phillips, Ph.D.

Individuals with balance issues are significantly more likely to have hearing loss, and vice versa, suggesting that sensory structures of the inner ear often play an important role.

Most balance complaints are transient and do not require any treatment at all, and many are easily treated. For example, benign paroxysmal positional vertigo, which is when the structures of the inner ear deteriorate, can be treated with simple repositioning maneuvers that can be performed in the physician’s office with almost immediate effect. However, a significant number of vestibular disorders become chronic, debilitating issues.

If you have a vestibular disorder, the primary thing you’ll experience is a sense that something is horribly wrong. We don’t appreciate the importance of the vestibular sense until it is compromised.

Here are the types of balance conditions:

» Dizziness: an altered sense of your body in space.

It’s often accompanied by a feeling of lightheadedness, feeling like you’re unsteady or floating. » Vertigo: a false sense that you or the world are moving. » Imbalance: an inability to maintain your posture, difficulty walking, and falls, which are a leading cause of death in older adults. Older patients with imbalance have an eightfold increase in the probability of experiencing falls. » Oscillopsia: blurred vision when your head moves.

There is a “steady-cam” system built into your brain that compensates for head movement by moving your eyes so that your eyes remain fixed on objects of interest. When that system fails, you lose vision, your vision becomes blurred, and the visual world moves dramatically. » Cognitive challenges: trouble concentrating and trouble with memory, also known as brain fog. » Depression and anxiety: Vestibular disorders are debilitating and isolating, so it’s logical that people would experience depression or anxiety, but there actually is an anatomical substrate, or underpinning, for this as well. » Autonomic dysfunction: People with vestibular disorders experience conditions like nausea, vomiting, and difficulty with blood pressure regulation.

One example of a crossover advance that leverages knowledge of both the auditory and vestibular systems is the cochlear vestibular neuroprosthesis, which is similar to a cochlear implant in that it uses multiple electrode arrays to stimulate specific regions in the inner ear.

Link to Anatomy

There are underlying anatomical connections to these conditions. The vestibular nuclei in the central nervous system receive vestibular information from the inner ear. This data informs movements of the eye, neck, and body; assigns subjective value to self-motion; affects bodily responses such as blood pressure, heart rate, and digestive tract motility; and informs spatial orientation and memory.

Vestibular disorders can affect one or both ears. The five vestibular organs in each ear provide a certain degree of redundancy, which is a good thing.

The vestibular hair cells are constantly secreting neurotransmitters and the afferent fibers are constantly discharging. They modulate their discharge based on motion inputs. If I turn my head to the right, the afferents from the lateral semicircular canal in the right ear increase their discharge and the afferents from the comparable canal in the left ear decrease their discharge. And vice versa. This means not only does the vestibular system have redundancy but to operate optimally, both ears need to provide information to the brain.

When there is no difference between these inputs from each ear, your brain tells you that you are stationary. When you turn your head, there’s a difference between the two ears and that difference tells your brain that you are turning.

Acute unilateral loss (loss of vestibular function in one ear) reduces the output from one ear, and that then tells your brain that you’re turning rapidly toward the other ear. It produces whirling vertigo. Bilateral vestibular loss (in both ears) doesn’t produce whirling vertigo, but it does result in profound imbalance, disorientation, and cognitive challenges.

Compensation

How do patients recover from vestibular loss? The central nervous system actually engages in compensatory mechanisms to restore function. The brain compensates for missing information by adapting and by making substitutions using information from other senses such as vision, touch, and hearing.

Currently there are no non-experimental restorative therapies for the loss of vestibular hair cells. Vestibular and auditory scientists are using comparable approaches to treat these problems, and advances in one field can benefit both groups of patients.

One example of a crossover advance is the cochlear vestibular neuroprosthesis, which is similar to a cochlear implant in that it uses multiple electrode arrays to stimulate specific regions in the inner ear. Our laboratory has one in development, and there are similar devices at Johns Hopkins and in Europe. Currently being implanted into patients experimentally, this prosthesis is a good example of how the commonality between hearing and balance can help inform treatments.

James Phillips, Ph.D., is a research professor in the University of Washington’s department of otolaryngology–head and neck surgery. He is also the director of the Dizziness and Balance Center at the University of Washington Medical Center (UWMC), the Vestibular Diagnostic Laboratory at UWMC, and the Roger Johnson Clinical Oculomotor Laboratory in the Division of Ophthalmology at Seattle Children’s Hospital.

Share your story: Have you experienced a balance condition? Tell us at editor@hhf.org.

Support our research: hhf.org/donate.

Just Because Hearing Loss Is Invisible Doesn’t Mean

It’s Less Real By Kayleena Pierce-Bohen

When I was in my 20s for a period of about three years, I worked in nightclubs in San Francisco as part of the floor staff. I was subjected to live bands (including heavy metal, rock, punk, and other heavily percussive groups), DJ playlists, and other live performances for four nights a week, for roughly 10 to 12 hours at a time.

It was about two years after that period that people around me started suggesting I get my ears checked because I was frequently turning up music and the TV to hear it, speaking louder than normal indoors, and asking friends and family to repeat themselves because I was having difficulty hearing them.

When I got an annual physical, my general practitioner suggested I do an auditory exam as well as some imaging. It was at that time I was told I’d experienced some high frequency hearing loss. It was also about that time that I developed a high-pitched whine in my ears (tinnitus), as well as a horrible clicking, which continues even now whenever I try to write at a computer or read a book.

I also suffer from vertigo, which is compounded by my hearing loss and makes my life pretty miserable when it appears. I’ll have entire 24-hour periods where I feel like I’m on a ship trying to get my sea legs. Just walking in a straight line will have me clutching a counter or wall for support, which I know looks quite peculiar to other people to whom I seem “fine.” I’ve had to use a cane. I never had anything remotely like vertigo before I had been working in incredibly loud environments.

Earplugs, But...

I think because I was in my 20s and thought working at a nightclub was fun and interesting, and I was surrounded by talented musicians and entertainers, I didn’t stop to consider that I was going to the equivalent of four concerts a week. Not even concerts with two-hour sets—more like multi-day music festivals with four bands each performing two-hour sets!

Earplugs were provided for employees at the nightclubs, and I wore them when I remembered to, but they weren’t always the most effective. I could have invested in better ones. I could have also trusted the older staff members who cautioned against getting too close to the large speakers at the front of the stage. I could have done quieter activities when I wasn’t at work, so as not to compound the hearing issues I was unknowingly subjecting myself to.

Back then, it was definitely a case of “hearing loss is something that happens to other people” or “hearing loss is something I’ll experience maybe 20 or 30 years from now.” I had no idea that I would experience it so soon, and have to suffer from it so greatly while in my early 30s. I didn’t realize that hearing loss isn’t something anyone has to suffer from, and that in order to avoid it—whether now or decades from now— there are protective steps I can take.

Living With It

To deal with symptoms related to hearing loss, I now get annual earwax removal (something I didn’t think to do previously) from my general

Back then, I thought that “hearing loss is something that happens to other people” or “hearing loss is something I’ll experience maybe 20 or 30 years from now.” I had no idea that I would experience it so soon, and have to suffer from it so greatly while in my early 30s. I didn’t realize that in order to avoid hearing loss—whether now or decades from now—there are steps I can take to protect my hearing.

practitioner, and I use white noise machines to drown out the tinnitus wherever possible. I did participate in cognitive behavioral therapy, which is often used successfully to help tinnitus patients, but I didn’t find that it was effective in my case. It’s important to find out what works for each individual because while things like medication may work for some, they won’t work for others. There’s no cure for tinnitus or hearing loss, just ways to make symptoms more reasonable to live with.

I now work almost entirely at a computer for my job as a senior writer for an entertainment news site, and I have to take frequent breaks when the tinnitus and clicking get particularly irritating and make it difficult to concentrate. Usually, this involves going into a dimly lit room, turning on a white noise machine, and using a cold compress on my forehead. It’s highly disruptive, but I have developed the system that works best for me, and those around me are understanding when my ears are acting up and I need to do what I have to in order to make the effects more manageable.

Please Be More Aware

Hearing loss is something that sneaks up on you, especially when you’re not thinking about it. Hearing loss affects you in personal ways you don’t expect because it impacts communication, and that can make life difficult and frustrating. If people don’t know you very well, they can often think you’re trying to garner sympathy, and that’s another stressor that was initially frustrating for me to overcome.

I’ve definitely tried to impress upon people I know to protect their hearing when they want to enjoy their nightlife and to take frequent breaks from loud environments. Just making sure people are more aware of something they don’t normally even consider is a step in the right direction. A lot of people think only roadies or mechanics who work on jet engines develop hearing loss when they’re young.

I’d like to emphasize that because hearing loss is an invisible condition, it often gets dismissed because those of us who suffer from it “look fine.” This can make dealing with the general public or people who don’t know us very well a challenge. But we do value our close friends and family who support us.

Kayleena Pierce-Bohen lives in California. She appears in the video “A Few Words About Hearing,” part of HHF’s Keep Listening prevention campaign. Watch at hhf.org/keeplistening.

Share your story: Tell us about your hearing loss journey at editor@hhf.org.

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I’m 24 and Have Hearing and Balance Challenges By Tomoe Miyazaki

When people think of hearing loss and related conditions and the frustration they can often create, I know well I’m not the first person who comes to mind. I am a 24-year-old, recent college graduate and hiking aficionado, working as a business development associate. My intentions with sharing my story are to show the public that my hearing health circumstances are not restricted to older adults, and to build solidarity with folks in my own age demographic affected by hearing and balance conditions, especially those that remain unresolved. During my third year at University of Michigan, where I was studying biochemistry and French, I became aware of an unfamiliar, jarring sensation—extreme dizziness. If I closed my eyes for just a little bit, I’d feel my surroundings spinning. It was around the same time I recognized my difficulties hearing in large lecture halls. I wondered: How can my classmates hear the professors so much better than I could? Why do I struggle so much to work in groups? This didn’t make sense to me. But when I noticed my grades were suffering considerably and that I was close to failing a class, I knew it was time to seek medical attention. It is worth noting that I’d had a hearing loss from a very young age that affected my childhood, since I always felt isolated from my peers. But until the dizziness became a problem, I did not seek help for my hearing until college. My first visit was to my primary care provider, who directed me to both a vestibular (balance) specialist and an ENT (ear, nose, and throat) doctor. The ENT suspected a migraine issue and referred me to a neurologist. Fortunately, the neurologist ruled out a neuronal/brain condition, but said my symptoms are strongly indicative of Ménière’s disease, a rare hearing and balance condition that is poorly understood. Troublingly, Ménière’s disease can’t be confirmed for me, which is a typical predicament for many patients with vestibular disorders. My ENT maintains my audiogram doesn’t follow a typical Ménière’s pattern of low frequency hearing loss—mine is high frequency. For now, I am in a trial-and-error stage. Recently, I began a low sodium diet and decreased my alcohol and caffeine intake. I was also directed to get a hearing test twice yearly to

Tomoe Miyazaki started experiencing extreme dizziness while in college.

During my third year at University of Michigan, where I was studying biochemistry and French, I became aware of an unfamiliar, jarring sensation—extreme dizziness. If I closed my eyes for just a little bit, I’d feel my surroundings spinning. It was around the same time I recognized my difficulties hearing in large lecture halls. I wondered: How can my classmates hear the professors so much better than I could? Why do I struggle so much to work in groups?

measure significant changes in my audiogram.

I do have a measurable sensorineural hearing loss and had been prescribed hearing aids. I admit I do not wear my hearing aids as instructed because of the stigma associated with the devices and my relatively young age. I hope to overcome my hesitation to wear hearing aids.

In the meantime, I am learning American Sign Language to facilitate my communication with others. But to this day I still struggle with feelings of shame and anger at myself that I go out of my way to keep this part of me hidden from others.

On top of my hearing loss and vertigo, I also live with tinnitus, the sensation of ringing in the ears, and haven’t managed to find any viable solutions. My tinnitus is like a crackling sound and bothers me most when I am exposed to external noise. The condition is so bad that it negatively affects my work and relationships.

I hope I can figure out what exactly is causing my hearing and balance symptoms, and in the meantime, I hope my story inspires other young people that there are others out there who may be going through what you’re going through.

You are never alone in your journey. I hope knowing you’re not alone can be a first step to breaking the stigma surrounding hearing loss, as this is part of why I struggle to accept that I have this condition and that I would benefit from hearing aids if I consistently wore them.

That said, I know many in the Deaf community don’t necessarily want to use hearing devices, and that choice should be respected. If there is anything I want people to know, it would be that those of us with hearing loss are capable of doing anything except hear. All of us are capable of success in life, no matter what path for communication we choose.

Tomoe Miyazaki lives in Michigan. She welcomes comments and questions at tomorin_usa@yahoo.com.

Share your story: Tell us about your hearing loss journey at editor@hhf.org.

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Exciting Possibilities

Studying the influence of combined visual and auditory inputs in different contexts is made simpler through virtual reality. By Anat V. Lubetzky, Ph.D.

The general public is increasingly aware of the dangers of falls. Falls can be fatal or lead to an injury that ends in hospitalization and/or the loss of independence.

The Centers for Disease Control and Prevention (CDC) reports that more than one in four adults ages 65 or older falls each year, but fewer than half tell their doctor. The CDC also cautions that an individual who has fallen once is twice as likely to fall again.

Falls can lead to severe injuries or death. They also impact quality of life if someone enters a vicious cycle due to fear of falling. We know that individuals with vestibular disorders—that is, problems in balance and dizziness due to a disease of the inner ear—who lost their balance in a certain environment are likely to subsequently feel dizzy or anxious in that particular setting.

While people with vestibular disorders are at increased risk for falls, they don’t necessarily fall a lot because they may develop avoidance behavior. They think twice about taking the subway because there are stairs, noise, and people. Going to the grocery store may become too triggering.

But we know that avoiding everyday activities can affect mental health. We become isolated because we don’t engage with the community and our friends as much as we could. We become more fearful and more anxious. Then we’re not moving as much, and this affects physical health.

Without regular physical activity—and exercise is so important for helping us maintain our balance and overall health—our muscles and bones become weaker, and we’re more likely to fall. Being weaker makes it harder to walk regularly, and that also contributes to falling, and the fear of falling makes it less likely we want to do something physical like going for a walk. It becomes a spiral.

This is why in balance rehabilitation, the behavioral aspects—the anxiety and fear—are a huge component. Beyond working on muscles and sensory systems, we also need to gain back our confidence.

Going Virtual in Rehab

The use of virtual reality (VR) in physical therapy and rehabilitation started many years ago. Over the past decade, VR has become more affordable and portable, with minimal lag time. As mentioned before, people with vestibular disorders have problems in visually busy environments, such as a street packed with people, and unstable surfaces, such as a moving train or bus. We created visually complex environments in VR, using a head-mounted display, to provide a graded way for patients to safely experience complex sensory environments in a functional context.

Practice should help patients feel less dizzy and more confident in their balance, because VR is a safe environment for learning to combat any “fear avoidance”

People with vestibular issues have problems in visually busy environments with unstable surfaces. Shown here, Anat Lubetzky, Ph.D., is using virtual reality delivered through a head-mounted display to provide a graded way for patients to safely experience complex sensory environments in a functional context.

behavior. Training in a real-life (albeit virtual) context should theoretically be better transferred to daily function because it presents conditions as close as possible to those commonly encountered during daily activities.

Context Matters

My team and I at New York University and the New York Eye and Ear Infirmary of Mount Sinai have been doing VR research for the past six years. There are benefits to this approach that we couldn’t access otherwise, most notably being able to create a gradual, measurable alteration to the sensory situation so we can collect concrete data about balance behavior. We can measure differences in people’s balance in response to different levels of visual, auditory, and cognitive stimuli and potentially break down the user’s sensory dependence in greater detail. In pilot trials we’ve also found that some shifts between two different visual levels can be too subtle to have measurable effects on the user.

Another benefit to using VR is the context. Instead of an environment that is very controlled and clinical (in both senses of the word), we can take people (virtually) to the street or onto the subway. We can also customize the environment. In fact, a lot of our scenes have been built for a specific patient story. One patient told us about difficulty navigating airports and flying, so we built a virtual airport where we could gradually increase the sensory load.

One major goal is to understand what context does to balance and sensory integration. We know what it does behaviorally, and that it matters a lot in how we feel. But we are still lacking evidence as to whether it actually affects physiological reactions and balance outcomes.

Because VR headsets were designed for use in gaming, we can get very accurate head kinematics (movements). We don’t need multiple cameras and markers. By applying trackers on any body part, such as the ankles or lower back, we can capture that movement immediately—in one click.

This research can be transferred directly to the clinic because the VR equipment is so portable. We can literally go to the patient, as they come to their medical appointments, instead of having the patient come to the research lab, and still obtain accurate information. This portability helps with study recruitment, too!

While people with vestibular disorders are at increased risk for falls, they don’t necessarily fall a lot because they may develop avoidance behavior. They think twice about taking the subway because there are stairs, noise, and people. Going to the grocery store may become too triggering.

And What About Sound?

As we advanced through our work in VR, evidence about the relationship between hearing loss and falls emerged. We therefore asked: How does sound play into this? How do noisy settings affect balance? Using VR we can manipulate both the visual and auditory environments— and of course in real life, these are not isolated, and hearing and vision inputs work together.

We also asked ourselves whether the opposite—static, steady-state sounds—can help balance. After conducting a review, we saw that several laboratory studies have shown that people can reduce their movement, or what we call postural sway, and adopt a steadier stance when they are presented with broadband white noise.

We can therefore imagine a situation where white noise may be helpful for balance. Most studies used speakers for the white noise, but could people use headphones, almost like a sensory “crutch”? We don’t know yet, but it’s something we’re looking at. What type of static sounds might help? Which hardware do you need? Can this treatment work over headphones or not? These questions need answering, but the possibilities are exciting.

This story was originally an interview conducted by the National Institutes of Health. A shorter version appeared on the NIH News in Health website, at newsinhealth.nih.gov. A 2019 Emerging Research Grants scientist, Anat V. Lubetzky, Ph.D., is an associate professor in the department of physical therapy at New York University. She earned a prestigious Early Career Researcher R21 grant from the National Institute on Deafness and Other Communication Disorders to continue her research into the role of hearing in balance control. For references, see hhf.org/winter2022-references.

Share your story: Tell us about your balance challenges at editor@hhf.org.

Spectrum Sounds

A composer shares the music he developed as a result of his experience with Ménière’s disease, thanks to a careful recalibration of his musical tools and the integration of visual and other interpretations of sound. By Andrew Hugill

As I write this article, I am in the process of composing seven short pieces under the title “Spectrum Sounds.” These are commissioned by the BBC to be broadcast on their platforms.

This is a major milestone for me. Back in 2009, when I was diagnosed with Ménière’s disease, I assumed that my compositional career was over. Having been a successful composer and a professor of music, this was naturally quite devastating, but I had to face the reality that my hearing had disintegrated.

To be specific: I have severe unbalanced hearing loss (right ear worse than left) that follows the classic Ménière’s profile of low frequency loss foremost; fluctuating tinnitus in both ears that varies in intensity and character on an hourly basis; and diplacusis, in which the brain registers two different pitches when a single note is played. Even the simplest music can quickly turn into a dissonant and semi-audible mush.

The years between 2009 and the present day have therefore been a story of finding ways to compose with Ménière’s. This remains an ongoing project, but it is interesting to explore how I have managed to get to the present point of effectively renewing my compositional career.

There was a major choice to make: Do I revert to writing “dots on paper” in the traditional way, because I at least know what they should sound like even if I cannot hear them myself? Or do I, as a composer who often works directly with digital sound, find a way to continue to do that despite my compromised hearing?

In other words, should I deny and fight against my condition, or should I somehow work with it? Broadly speaking, I have chosen the latter course, but it has not been easy.

Everybody Hears Differently

In 2018 I founded the Aural Diversity project, which explicitly sets out to include musicians of all hearing types. Aural Diversity has a tagline which is objectively true: Everybody hears differently!

The music business takes little account of hearing differences, so this project tries to raise awareness of conditions such as Ménière’s disease. Aural Diversity was financially supported by GN Hearing, whose wonderful ReSound hearing aids were a great help to me in opening up musical possibilities, as well as the Arts Council England and the Arts & Humanities Research Council in the U.K.

From a personal point of view, it provided the opportunity and motivation to begin composing again.

The first outcome was my piece, “Thirty Minutes for Diplacusis Piano.” This began with a systematic attempt to map my own hearing by blocking each ear in turn and recording myself singing perceived pitches, then testing the results with a pitch meter. This produced a list of pitches and the discrepancies between my two ears. Pitch was not the only difference; for example, the perceived amplitude was considerably softer from 138 hertz downward and fell away steadily.

I discovered other specific changes in how my hearing worked, with no diplacusis at all in one specific octave, but worsening the higher the range (the piano sounds metallic in that register anyway). The range below middle C is affected by unpredictable amounts of diplacusis note by note, and then in the lower notes it gets even more complex.

Using this information, I was able

to construct a digital instrument that accurately reproduces what I hear when a normal piano is played. Composing for this instrument was extremely challenging. I was hearing my own diplacusis layered onto my own diplacusis! I realized I could only tolerate short pieces, one minute each.

I also realized I needed a new form of music notation to help me understand how the sounds I was producing could work together. I used a rolling spectrogram that became a compositional tool where I could line up piano overtones with one another to create meaningful sequences.

Videos of these became an integral part of the piece and were screened with the music during the Aural Diversity concerts, giving access to the music even for those who could not hear at all.

Group Setting

This worked well as a means to find some beauty and music in my own hearing, but I also wanted to work with others. “Kelston Birdsong” was written for an ensemble of musicians, ranging from profoundly deaf cochlear implant wearers, through those with a range of conductive and sensorineural hearing losses, to those with hyperacusis or misophonia (so not exactly a loss, but a heightened sensitivity). The piece works by playing recordings of birdsong that are audible to individual musicians, who then respond with a call, to which the rest of the band respond in their turn.

Ménière’s is destructive of musicians’ careers. I spent several years keeping it secret after my initial diagnosis but, at the same time, I was forced to change careers—I am now a professor of creative computing. Some Ménière’s musicians turn away from music altogether and no longer either play or listen. This is something I can well understand, because the very act of listening can become uncomfortable or even painful after a short time.

For myself, I have found a way back to composing through a combination of dogged persistence and some extraordinary digital technology. I intend to continue to confront and engage with the reality of my disability in my music. I hope that in doing so, I may encourage others in a similar position to see a more positive future.

As a new form of musical notation, the rolling spectrogram became a compositional tool.

This originally appeared in the U.K’s ENT and Audiology News website, at entandaudiologynews. com. Andrew Hugill is a professor in the School of Computing and Mathematical Sciences at the University of Leicester in the U.K. For more, see the Aural Diversity project at auraldiversity.org and andrewhugill. com. You can find his “Thirty Minutes for Diplacusis Piano” at andrewhugill. com/music/thirtyminutes, and “Kelston Birdsong” at andrewhugill. com/music/kelston_birdsong.html.

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   Check,

Check, Check

A constellation of conditions helps explain hearing and balance difficulties.

By Mary Horton

Vrroom! “Did you hear that?”

I don’t know how many times I asked my family and close friends that question, before I finally quit asking, as they all looked at me like I had lost my marbles.

Vrroom! Why won’t it quit? Why do I have a vacuum cleaner running in my head all the time? Am I going crazy?

About the time I seriously admitted that I had a hearing problem, I also heard this vacuum cleaner noise constantly. Even after I began wearing hearing aids, it was still there. So, in addition to not really being able to hear conversations because of my hearing disability, anyone speaking to me had to speak clearer and louder than my vacuum cleaner!

Okay, it was time for me to learn more. This is what I found.

Tinnitus is a phantom sound. Typical-hearing people can hear a pin drop in the quiet, but people with tinnitus hear a constant ringing or roaring in their ears. Mine was neither. It was definitely a vacuum cleaner! Also, tinnitus in some people comes and goes. Mine never went away, day or night. Ever.

Ménière’s disease is an inner ear disorder leading to fluctuating hearing loss, tinnitus, and vertigo, or “spinning.” When I first began hearing the constant vacuum cleaner, I did not have vertigo, although I did develop it nearly 20 years later. And when they say spinning, they are not kidding!

My otolaryngologist tested my ears in every possible way. Each time, he was surprised that my hearing disorder was different from what was “typical.” Most people with hearing loss, especially in older age (check! ), have difficulty hearing higher voices and tones, but I could barely hear the deeper tones, bass tones, and generally men’s voices—and especially my husband’s. Not a great thing for a happy marriage, even when he is helpful and supportive!

Several years later, I actually found a name for my vacuum cleaner. It is hyperacusis. It is your brain being sensitive to, and overamplifying, sounds in your external environment. For some people, hyperacusis is only a minor irritation. Other people experience serious side effects, including loss of balance and seizures.

This hearing disorder makes it difficult to handle everyday sounds. Certain sounds may seem unbelievably loud, even though people around you don’t seem to notice them. Stress can further increase this sound sensitivity. The most common cause of hyperacusis is damage to the inner ear from loud noise (like maybe from front row, speaker-adjacent seats at rock concerts for several years when I was a young music reporter?). Another !

Vestibular (balance) hyperacusis is when you experience dizziness or feel unsteady in reaction to everyday sounds. This is what I learned: The hearing and balance systems of the inner ear are both filled with fluid. The movement of this fluid stimulates the sensory cells, making them vibrate. The sounds are sensed and converted into electric signals that the auditory nerve sends to the brain to be interpreted.

From what I understand, vestibular hyperacusis is a misinterpretation and confusion of these vibrations and signals, possibly due to nerve damage in the balance organs, throwing the balance system akilter. Instead of feeling pain from everyday sounds, everyday sounds can make you feel dizzy.

Let’s add Ramsay Hunt syndrome (herpes zoster oticus) to the whole package, which occurs when a shingles outbreak affects the facial nerve near your ear(s). In addition to the painful shingles rash, this can cause facial paralysis and hearing loss in the affected ear. Yep, another  !

My otolaryngologist tested my ears in every possible way. Each time, he was surprised that my hearing disorder was different from what was “typical.” Most people with hearing loss, especially in older age, have difficulty hearing higher voices and tones, but I could barely hear the deeper tones, bass tones, and generally men’s voices—and especially my husband’s. Not a great thing for a happy marriage, even when he is helpful and supportive!

I had shingles on my face not once, but twice. What little bit of hearing I had in one ear was almost totally obliterated with my shingles bouts! (And yes, shingles occurs more frequently in older people, as it’s the same virus that causes chickenpox, which most older people have had.)

Is it known yet, whether the order of these conditions is interchangeable? No. But, it is interesting to note that in my case, about five years after I finally conceded that I had a hearing problem, I had the first case of shingles, which concentrated solely on the right side of my head, taking most of my remaining hearing in my right ear. I developed the primary symptom (vertigo) of Ménière’s disease 20 years after the vacuum cleaner took up permanent residence in my head. With vertigo treatment, it was found that I have had seizures (another symptom of severe hyperacusis) during much of that time.   

I have learned to live with my vacuum cleaner, although I tend to avoid gatherings of more than a couple people, or people whom I do not know well. I almost never talk on the telephone, but most friends and many businesses with which I associate routinely know to text or e-mail me, since I cannot hear a phone conversation. I still occasionally have dizzy spells, particularly when getting out of bed, so I am very careful not to get out of bed too quickly, or sit up too quickly.

Loss of hearing is isolating in many ways. But there is much to do, many paths to travel, and many people to meet along the way, regardless. Always look at the glass as being half full. You are not alone! Hearing disabled or not, we are all here for a reason. “Listen”… and find it!

Mary Horton lives in Alabama. For references, see hhf.org/winter2022-references.

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6 Ways to Raise Youth Awareness of Noise-Induced

Hearing Loss By Rohima Badri, Ph.D.

“I wish I had known not to stand so close to the loudspeakers,” says a 17-year-old patient to me during her routine audiometric visit, explaining how her hearing has never been the same—riddled with high-pitched tinnitus and distorted hearing—ever since the fateful concert, one year ago.

As many as one in five school-aged children (ages 12-19 years) shows signs of hearing loss as a result of excessive noise exposure, according to the Centers for Disease Control and Prevention (CDC). Noise-induced hearing loss (NIHL) not only affects a child’s hearing ability but their academic performance, social interactions, and overall mental health and well-being.

Unfortunately, in my clinical experience, the damage is already done by the time children and young adults like my teen patient become aware of the dangers of noise exposure.

There are many resources and tools available for educating and combating NIHL, yet there is a significant disconnect between recommended safe hearing practices and the choices made by the younger generation. The CDC says part of the reason for the gap is a failure to effectively reach and educate the younger population about the dangers of excessive and loud noise exposure. Because NIHL is irreversible but completely preventable, effective and engaging safe hearing practices that resonate with children and young adults are critical.

Creative, engaging ways to share healthy hearing habits through social media can have a positive impact on teens and young adults.

In places where there are loud noises, such as concerts, sports arenas, and school music rooms, attractive visual posters and images with bitesize messages about safe hearing practices can serve as a good reminder. Similarly, “loud noise” warning signs near noise sources such as loudspeakers and construction zones will be extremely beneficial in preventing permanent hearing damage.

Here’s how to encourage young people to practice safe hearing habits and prevent hearing damage from excess noise:

» Personalize the message. Parents, teachers, and health professionals should discuss the importance of safe hearing practices in a context that is meaningful to young people. Rather than simply stating that noiseinduced hearing loss will cause hearing difficulties in background noise, explain how even mild NIHL can disrupt otherwise enjoyable sports or music concert experiences, or make everyday tasks such as listening to music or following class lectures difficult and tiring. » Show instead of tell. Hands-on fun activities and live, interactive demonstrations of safe hearing practices are more likely to engage children than passive lecturing.

Children, for example, can use a sound level meter (free apps available) to measure and compare noise levels in various areas of the school (near loudspeakers, cafeterias, music rooms), listen to sounds with and without hearing protection, and so on. » Youth advocacy. Even better, children can become effective learners by teaching others about NIHL.

Children can take an active role in raising awareness and promoting hearing health in their schools, communities, and even online by starting or joining a club or organization. » Reminders and warning signs. In places where there are loud noises, such as concerts, sports arenas, and school music rooms, attractive visual posters and images with bitesize messages about safe hearing practices can serve as a good reminder. Similarly, “loud noise” warning signs near noise sources such as loudspeakers and construction zones will be extremely beneficial in preventing permanent hearing damage. » Easy access to hearing protective devices.

Concertgoers are seven times more likely to wear hearing protection during a concert if free earplugs are provided at the venue, according to a 2015 study in the International Journal of Audiology. Making hearing protection readily available (such as in vending

machines) in areas where noise exposure is high and frequent is another extremely useful move to prevent irreversible hearing loss. » Connect, interact, and engage through social media. In the United States, 84 percent of teenagers (13-18 years old) use online resources to obtain healthrelated information, according to a 2015 Media and

Communication report—and that number may be even greater now. It’s not enough to simply provide information to this group; instead, engage them through creative storytelling and motivate them to take action through calls to action. For example, start an “earplugs challenge” chain and encourage readers to upload and share photos of themselves at concerts wearing earplugs.

The Value of Healthy Hearing

Many teenagers, like my patient, are suffering or more likely to suffer from irreversible but preventable hearing damage as a result of noise exposure. To reach and engage this younger demographic, we must adapt messages and communicate the value of healthy hearing in a way that engages and resonates with them.

Rohima Badri, Ph.D., lives in New Jersey. To learn about HHF’s Keep Listening hearing loss prevention campaign, see hhf.org/keeplistening. For references, see hhf.org/winter2022-references.

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My Seasonal

Spins By Shari Eberts

Rising out of my backbend in yoga class, the world shifted, leaving my mind and body reeling from the dizziness. Luckily my knees were planted firmly on the ground so I did not topple over, but it was disorienting and very unpleasant. As I turned around to lie down in shavasana, I knew it was the start of my least favorite time of the year.

Each winter as the weather turns colder, my seasonal tinnitus spikes, and the seasonal spins make their unwelcome appearance. It is always a rough period of time as my body acclimates to the changes in temperature and atmospheric pressure that come with winter.

Tinnitus and Vertigo Are Seasonal

It turns out that I am not alone in my seasonal suffering. According to a study in the Journal of Otology, vertigo is in fact seasonal. The researchers found statistically significant seasonal variation in benign paroxysmal positional vertigo (BPPV), which is rotational vertigo induced by head position changes. The correlation of BPPV with temperature and atmospheric pressure changes was also statistically significant. In other words, this type of vertigo comes and goes with the weather.

The study also showed meaningful links between BPPV and many other factors, including sex and age. BPPV was found to be most prevalent in middle-aged women, and linked to lower levels of vitamin D, lower bone density, and nasal allergies. None of this is good for me, a 50-plus-yearold woman living in New York City.

My Tips for Managing

Vertigo can be quite debilitating, especially in extreme cases. While my case is mild, here’s how I lessen its impact. Slow down. It’s hard to jump from activity to activity when you feel dizzy and nauseous, so I force myself to slow down, take breaks, and moderate my schedule. Lying down in the dark with my eyes closed can help. Move mindfully. Abrupt head movements can bring on a sudden bout of dizziness, so I move as mindfully and methodically as I can. I take extra time to shift position, to stand up or to lie down, hoping not to shock my system. During my yoga practice, I move in and out of backward and forward bends very slowly, and if I need to, I skip the postures that seem to aggravate the condition. Make diet adjustments. While I personally don’t feel a noticeable impact from changes in diet, the Mayo Clinic suggests avoiding caffeine, alcohol, salt, and tobacco to help curb dizziness. It also recommends avoiding driving or operating heavy machinery in case a bout of dizziness appears without warning.

After a few weeks, I am thankful (and know I am lucky) that life usually returns to normal.

According to a study in the Journal of Otology, vertigo is in fact seasonal. The researchers found statistically significant seasonal variation in benign paroxysmal positional vertigo (BPPV), which is rotational vertigo induced by head position changes. The correlation of BPPV with temperature and atmospheric pressure changes was also statistically significant. In other words, this type of vertigo comes and goes with the weather.

Staff writer Shari Eberts serves on the Board of the Hearing Loss Association of America and is a past chair of HHF’s Board of Directors. “Hear & Beyond,” a new book she coauthored with Gael Hannon, is due out in May 2022. This originally appeared on Eberts’s blog, livingwithhearingloss.com. For references, see hhf.org/winter2022-references.

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A Personal and Professional Connection to the Mission to Research and Cure Hearing Loss By Ellie Daniels

Ellie Daniels with her son Frank.

When I was 5, I had an ear infection in my right ear that showed no improvement after taking antibiotics, and it quickly turned into something really serious. The doctors told my parents that there was a growth in my ear, but it was isolated to one of the ear’s tiny bones. I underwent surgery to remove the bone and have it cleaned, then had another surgery to put the bone back in my ear.

At age 11, I was at a routine appointment with my ear, nose, and throat specialist and we were told that they needed to operate immediately, because the growth had not been completely removed six years prior.

It turns out that a cholesteatoma—an abnormal growth of skin cells—had been developing for years in the back of my ear. It had exposed itself to the lining of my brain, wrapping around the nerve that sends impulses from my brain to the rest of my body.

After an eight-hour, open ear surgery, it was removed, but not without removing and/or restructuring a large portion of my inner ear.

This all happened so long ago that it’s challenging for me to remember details. The hearing loss in one ear was really considered collateral damage to removing such a scary and aggressive growth, and I think everyone was grateful that this was the only long-term effect I had to deal with.

Though, truthfully, I haven’t really “treated” my hearing loss. After the rebuilding of my inner ear and canal, there wasn’t enough tissue for a cochlear implant, and I have never tried to get a hearing aid. I think I made the excuse that I would likely lose this expensive piece of machinery soon after I got it, but honestly I think the (imagined) stigma of having to use a hearing aid as a young professional is what held me back.

So I’ve tried to see my hearing loss as a blessing as much as possible. Over the years it has helped me drown out things like fussing parents, uncomfortably loud music at the gym, and a crying baby during sleep training. I find it especially helpful when I’m trying to sleep and my husband is snoring—I just put my bad ear up!

And now coincidentally in my career, as a partner success strategist at FreeWill I have had the unique opportunity to support Hearing Health Foundation with their planned giving program. FreeWill allows you to create your will online, for free, in 20 minutes or less, while also leaving transformational bequests to nonprofits like HHF.

I think it’s imperative to support those nonprofits that do the hard work to make a positive impact in our community. The work that HHF does is so important. I encourage everyone to check out freewill.com/hhf and create a legacy dedicated to hearing health and the prevention and cure of hearing loss and tinnitus.

Ellie Daniels lives with her husband and sons, Frank and Wade, in North Carolina.

9 Things to Know About Hearing Loss From the Perspective of the Communication Partner

By Pat Dobbs

If, like me, you have a hearing loss, you know what your hearing challenges are. But what about your friends and family? Do they have challenges communicating with you? I bet the answer is yes. Why wouldn’t they? Hearing loss is a communication disorder that affects all the people in our lives.

The challenges our hearing loss presents to our friends and family, also known as our communication partners, depend on factors such as the length and severity of our hearing loss and the depth of our relationships. This article is inspired by what I’ve learned from my teacher and mentor Sam Trychin, Ph.D., a psychologist, educator, author, and creator of his Living With Hearing Loss Program.

Here are a few comments I’ve heard informally from friends who live with hearing impaired people (like me) and insights into what both sides may be thinking.

We don’t acknowledge our hearing loss.

For many of us, it can take years before we acknowledge our hearing loss and get hearing aids. Or we get hearing aids but keep them safely tucked away in a drawer. Both scenarios are frustrating and annoying for our partners. They have to talk louder, listen to blaring TVs, and hope we understand important instructions and information. It’s a shame that something could be done about these problems, but regrettably, we tend to either deny that there is a problem or hope it will go away on its own.

1

2

We ask our partners to change how they talk to us.

So that we can better understand our partners, we ask them to make direct eye contact when they talk to us, not to talk with their backs turned to us or from another room, talk more clearly, louder but not too loud, slower but not too slow. (Are we demanding or what!)

For instance, Debbie says she tries to talk in whichever way it’s best for her husband with a hearing loss to hear her. But sometimes she forgets. After all, it’s different from the way she and other people with typical hearing have been communicating all their lives. Even when she talks as he has asked her to, her husband may misunderstand what she’s saying and he asks her to repeat. Debbie tries not to get annoyed but admits she does. She understands why her husband doesn’t hear, but it’s still challenging for her. Patience is necessary. Patience, she reminds herself again and again.

Laura says it’s hard for her to remember to not call to her husband from another room, as she’s done for years. It’s inconvenient because now she has to go where he is. She misses not being able to whisper a comment at the movies.

Now Laura says she waits until she can speak in a normal tone. Then she may forget what she wanted to say. And she says she sorely misses intimate bedtime conversations in the dark because her husband now needs to have light on her face in order to hear her.

We often bluff.

One of our worst habits is bluffing, pretending to understand what our partner has said when we haven’t. Our partners hate this. They wonder what’s the use of talking if we just mimic back facial expressions or respond out of context. Gary says he can tell when his wife is bluffing and calls her on it immediately. Barbara hates calling her husband on it because he’s sensitive and embarrassed by his hearing loss. She tries to rephrase her questions, hoping he will give her a valid answer, rather than pretend.

We get insulted when our partners say “never mind.”

There’s nothing we hate more than when our partners say “never mind” when we ask them to repeat a passing punch line. They know that perfect moment is lost and wouldn’t make sense. So how do they feel about repeating that punchline? It’s awkward for them as that critical moment is lost. But if they don’t repeat it, we’ll get angry or hurt or something in between. We all know how we feel if someone says “never mind.” Think about how they feel when they have to repeat something that only works in the moment.

We can talk to our partners, but often they can’t respond to us.

There are situations when we can talk to our partners, but they can’t respond where we can understand them. Examples are when we’re driving, have a headache, or have auditory fatigue and are too tired to focus on listening. Then there are the times when we ask a question without a simple yesor-no answer, and forget we can’t look at our partners because we’re driving or need to be looking in another direction. We’re forcing them to wait to give us an answer.

This is one of Anne’s complaints. It annoys her that her hearing loss husband can talk to her, but when he’s driving or tired, she can’t respond to him because he wouldn’t hear her. Annoying, Anne says, very annoying.

We make our partners deal with blaring radio and TV.

Unless we’ve learned how to listen to the radio and TV with our hearing aids or assistive listening devices, we turn up the volume so loud that it can hurt our partner’s ears.

Ellen told me her husband refuses to get hearing aids. He cranks up the volume of their TV so loud that it’s painful to her ears and she can’t watch in the same room with him anymore. Now he watches TV in another room with a closed door. Even with the door shut, it’s still too loud. Aside from the noise, what she misses most is the intimacy of watching TV together.

3 5 7 We resist confirming important information.

If our partner is relating important information like when and where to meet them, they may ask us to repeat it to confirm that we’ve gotten it right. Hopefully, we have the grace to do that, but we’re often annoyed at being second-guessed. Henry says that when he asks his hard of hearing wife to repeat critical information, she slams back that she’s got it, only to find out later that she misheard. Of course, this causes problems and total frustration that could easily have been avoided had 4 she confirmed what Henry said or he had written the instructions down. We often tune out. What should our partners do when they know we can’t 8 hear a conversation and tune out? 6 Should they be our ears and repeat everything, or summarize the highlights? Should they let us deal with the situation ourselves? The answer probably depends on how important the information is, the mood, and the setting. John feels awful when he sees his wife left out like that, but he’s never sure what to do. He doesn’t want her to feel ignored but worries that he might be helping her too much. Would it be better for her to advocate for herself? He’s never sure of the right balance. And sometimes, when he does advocate for her, she gets annoyed because she feels he’s overstepping.

What is clear is that hearing loss is a communication disorder that affects all our relationships. Working through communication problems isn’t easy. Partners that have been together a long time still have their glitches. Good communications mixed with love, humor, and patience helps everyone deal with these difficult and frustrating situations.

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We’re saddened by our loss but so are our partners.

Our partners are saddened by the loss of communication they once had with us because we interact less as our hearing gets worse. We try to avoid social gatherings like family events, or different types of entertainment because it is too difficult for us to understand what is being said. If we do go, people often think we are rude or depressed because we don’t participate. This directly affects our partners. They miss the interaction we used to have.

Then there are the private conversations at home. In bed at night, we need to have the light on to see our faces. When we hug, there’s a good chance our hearing aids or cochlear implants will fall out. Our partner’s words of love could provoke romantic responses like “Huh? What’d you say?” Really romantic!

The Five Stages of Loss

Our communication loss is also our partner’s loss. We both go through the five stages of loss: denial, anger, bargaining, depression, and acceptance. Each person experiences them in different ways and at different times.

What is clear is that hearing loss is a communication disorder that affects all our relationships. Working through communication problems isn’t easy. Partners that have been together a long time still have their glitches. Good communications mixed with love, humor, and patience helps everyone deal with these difficult and frustrating situations. I have to chuckle to myself— because communicating is the answer to working out our challenges because this is a communication disorder. Thank goodness we can laugh.

Pat Dobbs started to lose her hearing when she was 20 and today is the happy recipient of bilateral cochlear implants. Through most of her life she bought into the stigma of hearing loss until finally she came to terms with it. She then launched the Hearing Loss Association of America Morris County Chapter in New Jersey, serving as president. She also attended Gallaudet University’s two-year peer mentoring program. Inspired by this program, she designed and facilitated a series of workshops on managing hearing loss, and began a coaching practice focusing on the personal, career, and relationship challenges unique to people with hearing loss. Dobbs is the president of SayWhatClub, a global online hearing loss support group and a new resident of Deer Isle, Maine. For more, see Hearing Loss Evolution, at hearinglossevolution.com.

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