The Emotional Side of Hearing Loss

Katherine Bouton Healthy Hearing, Hearing Loss and Depression, hearing loss and isolation

When I wrote Shouting Won’t Help (2013), a memoir of losing my hearing, I went into full confessional mode. I wrote about my struggles with anxiety and isolation and depression as my hearing loss worsened.  I wrote about denial, anger, grief, about drinking too much and seeing a therapist, about losing my job.

I also wrote about practical matters like hearing aids and cochlear implants, access to audiologists, how to find a support group.

But when I gave readings to audiences with hearing loss, my emotional devastation was what people wanted to talk about. I remember one reading where three women sat together in the front row and cried through the whole event. Afterwards they thanked me for putting into words the grief and anger they themselves were experiencing.

I wasn’t the first to talk about the emotional fallout of hearing loss – people like Sam Trychin and Michael Harvey had been talking about it for years.  Web MD has a good discussion online, as do many other sites. But for many of those who came to my readings early on, the realization that they weren’t alone, and that it was okay to grieve, was new.

Many adjust to their hearing loss over time, as I did, and people who develop hearing loss at an early age are usually accepting of it as part of who they are. But for those who develop it in mid-life, especially if the onset is sudden, the emotional impact can be formidable.

Now three people with hearing loss have had the brilliant idea to create a Facebook forum where people can share their feelings. Richard Pocker, Mary Grace Whalen and Robin Chisholm-Seymour put their heads together and after months of discussion launched Hearing Loss: The Emotional Side at the beginning of June. They clearly hit a nerve, and as of this writing they have 900+ members and counting.

I talked to the creators via Google Meet last week. Richard is a retired business owner who wore hearing aids as a child and after losing all his residual hearing at age 30 managed by lipreading. After he retired to Florida, he learned about cochlear implants. He was bilaterally implanted in January 2016. His speech comprehension with the implants went from 0% to 85% with intensive rehab, some of which he designed himself. He went on to become a peer mentor for people with cochlear implants, then started a website and a podcast on implants. One of those he interviewed on the podcast was Robin Chisolm-Seymour, whose background is in mental/psychiatric healthcare. In her podcast interview, she talked about hearing loss as an amputation, and that sparked the idea for the Facebook page. They were joined by Mary Grace Whalen, a member of our New York City Chapter, who has published many articles on hearing loss since 1989 as well as writing on grief for the Hospice Foundation of America. She’s currently writing a memoir, “Living in the Color Magenta: Chronicles of a Deaf, Grey and Italian Woman.” All three are bilaterally implanted.

The three take turns monitoring the FB discussion, and if it starts to stray – towards the question of bilateral implants, say – one of them will steer the conversation back to the theme of the page: the emotional side of hearing loss. Readers raise their own issues, and jump in to comment on others’ posts. The discussions are generous, supportive and open.

I asked what surprised them most about the response and Richard said it was the number of people who say that they’ve never had a place to express these feelings before. “The emotion is just pouring out onto the page.”

Robin, with a background in counseling, said she was not surprised by this outpouring. Many people with hearing loss feel that they’re not understood, she said, and the page offers them a forum. Sometimes the moderators realize that someone is distressed beyond what a non-professional can do, and they try to guide them to professional support. “On the one hand we want people to share, that’s the plus side of a support group,” Robin said. “But if I pick up on something serious, I message them.” Sometimes she will refer people to professional counseling. She also cautions that everyone has a back story, their hearing loss doesn’t exist in a vacuum. So part of what she does is try to evaluate what else is impacting their life, because that can determine whether they’re going to take any action or not.

Mary said that they originally also hoped to be able to create a database of therapists who could treat people with hearing loss but so far that has not been possible. The grief that may accompany hearing loss is “disenfranchised grief,” she said, borrowing a term from Dr. Kenneth Doka, an expert and writer on grief, which society does not recognize as grief. “We’d like to be able to offer them resources that will help them heal.” (I mentioned that the Center for Hearing and Communications in New York City has counselors on staff, and that other organizations might as well. If readers know of counselors who specialize in hearing loss, please let us know.)

You can join the FB page by clicking here. Your comments won’t be posted until you’re approved by the moderators. Because it’s a closed group, the posts can not be shared. (For those who are not a Facebook users, “sharing” means copying the post onto your own page for others to see.) Our chapter also has a closed Facebook page, which we formed because in the absence of in-person meetings during Covid, we wanted people to have a place to talk to each other — to provide the companionship and support that can be lost during formal Zoom meetings. You can join us by clicking here.

Every January our chapter has an interactive meeting, moderated by someone on our board, where people can speak openly about their hearing loss. In past years, the topic has been stigma and how people experienced it. Another year the theme was self-advocacy and members shared their successes – and their failures. We had already planned that next January’s meeting would be about the psychology of hearing loss, with members sharing their own stories and offering support to others who may have had similar experiences.

In the meantime, “Hearing Loss: The Emotional Side” offers another way to express those feelings.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

A Dynamic, Diverse Convention. Thanks HLAA.

Katherine Bouton Healthy Hearing

Last week, June 23-25, HLAA held its first in-person national Convention since June 2019. I had forgotten how great it is to see old friends and meet new people with hearing loss. The presentations were excellent, and attendance seemed impressive.

The convention was held in Tampa, Fla, at a nice Marriott by the waterfront. I left the hotel only once, knocked flat by the heat and humidity. Amusingly, for such a steamy city, the Stanley Cup playoffs were going on right next door, with Tampa Bay in the finals. Many readers may remember when ice hockey was a winter sport.

Due to flight delays, I missed the open board meeting and the opening session. But as I went up in the elevator, slightly dazed from the difficult travel  day, I got into conversation with a convention attendee who encouraged me to come to the welcome party and even showed me the way. (Convention hotels are always confusing when you first arrive.) Right away I could see that this was a Convention with a difference. Attendees were far more diverse than at previous conventions, and this diversity was reflected in the programming as well. Or maybe the programming resulted in the diversity.

The Friday morning research symposium reflected that diversity. Christine Dinh, MD, from the University of Miami, Candace Hobson, M.D., from Emory University, Diane Martinez, AuD, University of South Florida, and Justin Golub, MD, Columbia University (and one of our New York City Chapter’s professional advisors), made up the panel. They talked a bit about new developments in cochlear implants, but the emphasis was on inequity: who is getting cochlear implants, who not — and that’s what I’ll write about.

Christine Dinh spoke first, and said that at the Miami center where she is a c.i. surgeon, measures of cochlear implant success were impressive. Over time, the average success in word recognition was 60 percent and in sentence recognition 100 percent. Diane Martinez, audiologist, suggested that this success rate might be the result of several factors: Spanish speakers do remarkably well with cochlear implants. She speculated that because Spanish is more multisyllabic and vowel-heavy compared to English, it might result in easier word recognition. Those who are bilingual score higher on word and sentence recognition tests in Spanish than they do in English. Nevertheless there is a  low uptake of cochlear implants among Hispanics, who represent 70 percent of the population in Miami. Only 2.8 percent of those who are candidates have them.

Candace Hobson, of Emory, spoke about racial disparity in cochlear implantation. She said she had been at Emory for seven months before she encountered an African-American cochlear implant candidate. (The Atlanta metropolitan population is 33.6 percent African-American, according to the Metro Atlanta Chamber of Commerce.) One explanation is that many potential patients live in rural areas. Cochlear implantation requires a number of office visits for testing, surgery and post-op, programming and so on, and travel can be prohibitive. In addition, Medicaid regulations vary. Only 50 percent of state Medicaid programs cover cochlear implantation, which may affect minority participation. By contrast, Medicare covers implantation for all qualified patients.

Justin Golub talked about implantation in the elderly. Over 80 percent of those 80 and over need hearing aids and only 25 percent of those are treated. When it comes to cochlear implant success, age is not a factor. Among the elderly, which he defined as 75 and over for the purposes of the study, the risks from surgery are no different from those in younger groups when taking into account other health factors. The elderly do equally well in performance over time. The disparities in success result from the duration of deafness before implantation, daily usage of the implant, ant post-operative follow-up for mapping and adjustments. Interestingly, Golub said that one barrier is fear and lack of knowledge about cochlear implants in the medical community, who largely do not refer their older patients for cochlear implant evaluation.

This presentation be available on HLAA’s website as a captioned YouTube video.

Carrie Nieman, an otologist and public-health researcher at Johns Hopkins and a board member at HLAA, gave a workshop on hearing-care disparities and what we can do about them. Her suggestions included insuring that informed access about OTC devices is widely available. She also said that hearing professionals should encourage the use of inexpensive devices — like pocket talkers and “hearables” or “personal amplifiers” like the Sound World Solutions CS 50+ — for those who can’t afford hearing aids She said hearing health care itself should be broader and include community health workers partnering with hearing professionals, the training of peer educators, and other unconventional approaches to hearing car

There were too many excellent presentations to discuss them all, and I’ve focused on those whose subject was diversity. The final presentation of the convention, which will also be available on YouTube, was called “Diversity, Equity and Inclusion – The Conversation Has Started!” There’s too much to say about this one, so I’ll hold it for another post.

All in all, the workshops and presentations were invigorating and provocative, with lots of input from audience members.

The final offering on Saturday was a screening of the award-winning documentary “We Hear You — Now Hear Us,” produced by national board member Roxana Rotundo with board member Shari Eberts and New York City chapter members Toni Iacolucci and Holly Cohen. The 45 minute presentation was followed by a lively 45 minute discussion. As the program had promised, it mirrored the typical film-festival experience, complete with popcorn.

Next year’s convention will be in New Orleans. I’ll be there.

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Although I took notes throughout the convention, I may be remembering specific facts somewhat inaccurately. I’ll correct as comments come in. In addition, if you were at Convention, please add your observations in the comments.

For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

Political Activism with Hearing Loss

Katherine Bouton Healthy Hearing

A friend asked me recently if I had any suggestions for how she could remain politically active with her rapidly deteriorating hearing. She was worried that her hearing loss would rule out political activism. 

It doesn’t, but before I go into detail, the last paragraph of this post includes some important new information for New York City voters. A change in congressional districts in some cases also means a change in polling places and voting deadlines.

This image has an empty alt attribute; its file name is pexels-photo-5926410.jpeg
Photo by Sora Shimazaki on Pexels.com

But back to being active politically. There are some ways of volunteering that hearing loss might affect, but there are lots of others that don’t involve hearing. Positives first.

Postcard and letter writing. Many of us get involved by writing letters and postcards to potential voters. The Sister District Project found that postcards sent just after voter registration packets resulted in a 20% greater chance of the potential voter registering. (Another Sister District study found that chaser postcards in a political campaign – following up on an earlier call — were found to have a negligible effect.)

PreCovid, postcard parties brought people together to work for voter registration or encouragement to vote. The shared experience could be inspiring. The Sister District Project suggests that postcard or letter writers get together virtually, by Zoom, to create that same community feeling. Zoom participation is much easier for those of us with hearing loss. A Zoom session can be captioned by the host, or individual attendees can provide their own captions with Otter.ai or Google Live Transcribe. I set my smartphone up on my laptop to provide live captions. For phone calls I use Innocaption. All three of these apps are free.

Phone banks. This is another event category that may be difficult for people with hearing loss, since they are often held in rooms with a lot of people talking on different phones. Made for iPhone or Android hearing aids will help you a lot because they transmit the sound directly to your hearing aid. In addition, you can use a captioning program like Innocaption. Phone bank gatherings can also be virtual these days, and as with postcard parties, virtual gatherings will make it easier for the person with hearing loss to participate.  

Demonstrations, large or small local displays of support for a policy or candidate, shouldn’t be off limits to the deaf and hard of hearing. You may not hear the speeches but your presence will be counted. Still, people with hearing loss may be uneasy in large crowds, in part because of the hearing loss. Don’t do what you don’t feel comfortable doing.

Posting on FB, Twitter or other social media is as easy for people with hearing loss as it is for anyone else.

There are some activities that are more difficult, depending on the severity of your loss.

Canvassing door to door is an age-old tactic but the obstacles when you have hearing loss may make this prohibitive. The person who answers the door may be wearing a mask, or might speak with an unfamiliar accent or in a way that you can’t hear. Understanding speech is hard enough with friends but even harder with strangers. Being able to engage in conversation when canvassing is important. The same is true for handing out flyers on the street. You need to be able to answer questions and it can be very beneficial to engage people in discussion.  

Working in campaign headquarters can be exhilarating. I worked in a political campaign straight out of college and loved the feeling of community and shared goals. Alas, my hearing is bad enough now that even with a hearing aid and cochlear implant I can’t hear in a noisy place.  

Depending on the extent of your hearing loss you might be able to work as a poll watcher. One of my HLAA colleagues does this in New York City, where polling places are loud and crowded.

But back to what you CAN do.

Vote. Make sure you’re prepared before you even walk into your polling place. My election district has just changed, so I’ll be sure to look up (and write down) my new ED so that I don’t have to rely on information from a poll watcher to get into the correct line.

Donate. Writing a check doesn’t require hearing at all.

If readers have suggestions for other kinds of political or social-justice activities, please contribute a comment.  

*This last section is for New York City residents. The new election districts (which, among other things, now pit veterans Jerry Nadler and Carolyn Maloney against each other) also mean new polling places and new deadlines. Thanks to an online meeting held last week held by www.nycvotes.org, I can provide a few resources. To find out where your polling place is, go to https://findmypollsite.vote.nyc/. If you want to apply for an absentee ballot, go to https://nycabsentee.com/. Because of the continuing Covid outbreak, “temporary illness” is a valid explanation for the need for an absentee ballot. Finally, some deadlines have changed. Check nycvotes.org.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

Want to Hear Better? Read These Books.

Katherine Bouton Healthy Hearing

Books are no substitute for a good audiologist, but they can be very helpful in learning how to live your best with hearing loss.

Photo by Pixabay on Pexels.com

In “Hear & Beyond: Live Skillfully with Hearing Loss,” two seasoned writers on the topic of hearing loss have joined forces to tell us everything they know. This makes for a comprehensive guide for the neophyte and also a source of useful insights for those more experienced at living with hearing loss.

“Hear & Beyond,” by Shari Eberts and Gael Hannan, tackles the basics in clear organized chapters with lots of boxes and pullouts and mini-dialogues between the authors. Shari is the author of the popular blog “Living With Hearing Loss” and Gael of the critically acclaimed book “The Way I Hear It: A Life with Hearing Loss” and of “The Better Hearing Consumer” column on “Hearing Health & Technology Matters.”

Their primary aim, as they say in an opening statement, is to shift their focus – and ours – from wanting to hear better to wanting to communicate better. To this end they offer lots of practical advice on hearing aids and other devices, on speech reading and assistive technologies, on navigating tricky social situations like restaurants and cocktail parties.

Some of their advice is deceptively simple – “Arrive early.” This may be something you hadn’t thought of. Or it may even be something you have thought of but consciously not done, to avoid getting involved in a conversation you may not be able to hear. Arriving early, however, allows you to get your technology organized, get a seat where you’re most likely to be able to hear, and to tell anyone who needs the information about your hearing loss. “Arrive early” is one of their “hearing hacks,” simple precepts that are useful across the board.

They also coin some clever terms like “mindshift,” a way to reframe your attitude to something more productive. Instead of “nobody understands what I’m going through,” they write, think instead of the many people who’ve already been there, and realize that you can learn from them. Although they don’t say this specifically in this section on mindshifts, joining a support group like HLAA or ALDA can be your introduction to exactly those people who do know what you’re going through, and can help. As President of the New York City Chapter of HLAA, I also urge you to sign on to some of our chapter meetings, which you can find at hearinglossnyc.org, listed under “Programs.”

Another recent book is Latisha Porter’s “Sounds of the Heart.” Hers is a personal narrative, beginning with her difficult early school years before anyone realized she was deaf. She tells the reader how she got from there to here, i.e. a successful adult in the hearing world. She was blessed by a loving and supportive family, especially her father, and seems to have been similarly blessed with a loving and supporting husband. When it was suggested that the young Tish go into special ed because she was doing poorly in school (thanks to her undiagnosed and untreated hearing problems), her father said, “Tish is not going into a special education class, because there’s nothing wrong with her — she can learn.” Indeed she could, and she went on earn a B.A., a Masters. and eventually a PhD.

Tish, Shari and Gael are all active members of HLAA. If you go to the HLAA Convention in June, be sure to look them up.

A third book published recently is not about hearing, but I found it deeply resonant with my own experience. Frank Bruni, a New York Times columnist, suddenly lost much of the sight in one eye after a rare kind of stroke. He was at risk of losing his vision entirely. In “The Beauty of Dusk: On Vision Lost and Found,” he takes us along on the medical and emotional rollercoaster that ensued. It took a while for that rollercoaster to run its course, but in the end Bruni’s disability may have brought as much gain as it did loss. Here’s a wonderful example of the kind of “mindshift” Shari and Gael talk about. Though he can’t fix his eyesight, Bruni writes, he can shape his story: He can take the lament “I can’t believe what I’m going through” and turn it into a boast, a badge of honor: “I can’t believe what I’m managing to get through.”

Bruni also comes to understand how many people share seemingly life-shattering challenges: “Why me?” he asks at first, as we all ask when confronted with unexpected loss. “There’s a better question, of course,” he writes: “Why not me? Why should any of us be spared struggle, when struggle is a condition more universal than comfort, than satiation, than peace, maybe than love?” I think the phrase “vision found” in the subtitle refers in part to this greater understanding and compassion.

I have a library of books on hearing loss, some that I read before writing my own books, some excellent ones that have come out more recently. Of the more recent, Noel Holston’s “Life After Deaf: My Misadventures in Hearing Loss and Recovery” is a moving reflection on hearing loss, and David Owen’s “Volume Control: Hearing in a Deafening World,” prompted by his own encounter with hearing problems, uses his skills as a writer and reporter to bring readers up to date on every aspect of hearing loss. Modesty should prevent me (but doesn’t) from mentioning my own three books: “Shouting Won’t Help” Why I – and 50 Million Others – Can’t Hear You,” “Living Better with Hearing Loss: a Guide to Health, Happiness, Love, Sex, Work, Friends… and Hearing Aids,” and “Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss.” Happy reading.

The Sounds of Spring, with Soundtrack

Katherine Bouton Healthy Hearing

It’s spring. There’s so much to hear! And it gets louder and louder over the coming months.

Photo by Pixabay on Pexels.com

In early spring, the stream I walk along is full of ice-melt and cascades down the rocky gulley that is frozen in winter and dry in midsummer, roaring now like ocean waves.

The cardinals, with their winter “cheer, cheer, cheer,” are joined by early spring arrivals with their songs, from the dulcet coo-coo of a mourning dove to the shriek of a blue jay. In a few weeks the migratory birds heading north and those who settle here for the summer will bring new songs. If we’re lucky, the glorious rose-breasted grosbeak will stop by, its sound as beautiful as its appearance. A mocking bird can almost drive you crazy with its seemingly endless serenade. The rat-a-tat-tat of woodpeckers varies by their size and the wood they’re tapping.

Later in the season, insects provide a steady soundtrack – katydids, the whine of mosquitoes, the buzzing of bees, cicadas, crickets, grasshoppers, sometimes loud enough to drown out bird song. On late summer afternoons, before the riotous insect noise starts, you can hear the wings of hummingbirds.

The mammals are noisy too. The noisiest is the common gray squirrel, which has an impressive vocabulary, both oral and signed: “kuks, quaas, moans, twitches, and flags among them,” as an article in Wired (soundtrack included) called them.

Even the frogs are noisy. One of the loudest noises in early spring are the peepers. They’re not baby frogs, as you might think from their high pitch, but robust male tree frogs trying to allure potential mates.

I was prompted to think about the how noise heralds spring after a long, mostly silent icy winter by a lovely new book by biologist David George Haskell: “Sounds Wild and Unbroken: Sonic Marvels, Evolution’s Creativity, and the Crisis of Sensory Extinction.”

Haskell writes in an early chapter, “Sensory Bargains and Biases,” about his own progressive hearing loss. But he quickly moves on to the sounds of his title: the sounds we hear, the sounds we are endangering (by environmental carelessness), and the sounds we don’t hear: “We are … surrounded by sounds inaccessible to our unaided ears, each one tuned to its environment. Our senses live confined in a small part of the whole.” For those with hearing loss, it’s sometimes an even smaller part.

Another new book on the wonders and threats to nature is “The Sound of the Sea: Seashells and the Fate of the Oceans,” by Cynthia Barnett. It’s more a natural history of seashells and what we can learn from them than a book about sound. But one anecdote corrects some popular myths about conch shells. Contrary to the beliefs of wishful shell collectors, they neither reflect the sound of the ocean where they originated nor foretell storms; nor do they magnify the sound of our own blood. What spiral conch, welk and India’s sacred chanc shells do instead is act as perfect resonating chambers, amplifying ambient noise.

A London design studio had the brilliant idea to use bird song as a way to raise consciousness about hearing loss. Their app called “Hearing Bird Song” is an immersive experience that allows you to screen your own hearing. Users listen to recorded bird calls. Based on how well they hear them, by the app’s measures, they may find that they need to have their hearing checked more formally. Here’s an article on the app from Hearing Health and Technology Matters.

David Haskell has made a soundtrack to accompany his book. You can find it here. Even if you don’t hear well, you can adjust the volume. There are 22 tracks, from all over the world. Some are astonishing, and all are fun to listen to. “Five White Crowned Sparrows” (11 seconds) reminded me of one of my early hearing experiences after getting a cochlear implant in 2009. I had a hard time initially adjusting to the implant but one early spring day I was walking in Riverside Park in New York when I heard a cacophony coming from a nearby bush. It was full of sparrows, making a spectacular clamor.

Put in your hearing aids and enjoy the sounds of spring.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

CODA at the Oscars

Katherine Bouton Healthy Hearing

The triumph of CODA at the Academy Awards last night, which won Best Picture, Best Supporting Actor, and Best Screenplay, should go a long way towards raising awareness of the Deaf — and maybe also of the Hard of Hearing.

The film is a funny and very moving portrayal of a Deaf family who live in a small fishing town where everyone else is hearing. CODA stands for Child of Deaf Adults. In the film, 17-year-old Ruby (Emilia Jones) is the CODA. Father (Troy Kotsur, who won Best Supporting Actor), mother (Marlee Matlin, who won Best Actress for Children of  Lesser God in 1987) and young adult son (Daniel Durant) are Deaf.

The movie is fully captioned for those who want captions. For others, just the signed portions are captioned. Last night the CODA winners each had sign-language interpreters at their side. Their thanks to the Academy and their families and their colleagues were all the more emotional as the interpreters beautifully, almost lyrically, signed their words to the Deaf who were watching. The speeches – and the signed words – felt joyous.

Making spoken words comprehensible to non-signers, like me, is less an art and more a skill. The best captions are provided by a CART captioner, a professional who has trained to simultaneously provide live captions. (CART stands for Communication Access Real Time.)

You can get captions on your TV by activating Closed Captions, but the results will be mixed. If the show is live, like news or sports – or the Academy Awards – the captions will lag behind the speech and also get a lot wrong. This is most likely because they are using automated speech recognition, rather than CART captioners. Why the Academy and the networks can’t hire highly skilled CART captioners is beyond me. Further, the commercials are rarely captioned. Don’t advertisers want the substantial number of viewers with hearing loss to buy their products? Marlee Matlin was an early supporter of captions on TV, testifying in 1995 before Congress. We have captions on TV thanks in part to Matlin. Now we just need to get simultaneous and accurate captioning on TV. That shouldn’t be hard. Hire CART captioners! Spend a little money!

Signing plays a role in another of this year’s Oscar winners. Drive My Car, directed by Ryusuke Hamaguchi, won Best International Feature. The movie is ostensibly about a Japanese director staging a production of Uncle Vanya at a theater festival workshop in Hiroshima. As he’s auditioning actors from all over Asia, who will speak their lines each in their native tongue, a festival representative translates for the director. One actor uses Korean Sign Language. Rather than the fluid musical gestures of American Sign Language, Korean Sign Language – in this scene — is sharp, with emphatic slapping of palms, arms, chest – a little in the same way that Korean (and Japanese) sound staccato to an English speaker. It’s a fascinating glimpse of another Deaf Culture’s language. The signing actor plays Sonya, whose vision of a future where the grief of the present will give way to peace ends the play. The signing here is gentle, spiritual, hopeful, completely unlike what we’ve seen earlier.

I wrote about CODA in 2021 when the movie came out, about a scene where Ruby is performing in a concert. Her singing is mesmerizing, but when the camera shifts to her Deaf family in the audience, the sound cuts out. They are hearing – and understanding – nothing. They are clearly restless and start signing to each other about what to have for dinner. If I were in that audience, I wrote, I also would not be able to appreciate Ruby’s singing. But instead of silence I’d hear a cacophony of sound. Without any visual information (captions, expressive gestures), I might not even know it was music. Where her parents are encased in silence, I’d be turning my hearing aids down.

In the end Ruby finds a way to share her singing with her parents – and with me. The solution is to incorporate a visual component, giving expression to the words without actually understanding them. In Hamaguchi’s Drive My Car, the intention is also to give expression to the words even though neither the other actors nor the audience speaks the language (although they are subtitled in the movie, and in the theater when the play is produced). A recent essay in the Atlantic by Nina Li Coomes discussed the film in terms of the fluidity of language in a world where we can get instant translation on our smart phones. “Even if you don’t understand all the words being spoken in the script,” she wrote, “trust that the emotional response you have will be genuine.” Sonya’s signed words evoke an emotional response that feels true.

I’d still rather understand all the words, but being given visual or inflective means to understand the intent – and to respond to it emotionally — is a gift.

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For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.

What if We Could Cure Hearing Loss? A Clinical Trial Explores the Possibility.

Katherine Bouton Hearing Restoration

What if we could cure hearing loss? What if those of us who are hard of hearing could put aside the expensive and sometimes frustrating technology we use now? What if we could simply turn a biological switch and hear again, as well as we did before our ears suffered the detrimental effects of noise and age?

Researchers have been working on this problem for decades. They’re optimistic – they’ve always been optimistic. But when you ask when they might have results, the answer has always been, Maybe a decade. That was true when I published my book Shouting Won’t Help, in 2013, and it was true ten years before that.

But there is one big difference between 2013 and 2022 and that is that biotech and pharmaceutical companies have discovered the potential benefits (and potential profits) of restoring hearing, and are putting big money into research. Ten years ago, the researchers who were looking for ways to reverse hearing loss were mostly academics, funded by grants from the National Institutes of Health. The nonprofit Hearing Health Foundation also funded this work, through its Hearing Restoration Project, which fostered communication between researchers. Today large pharmaceutical companies like Novartis are funding research. Biotech companies like Frequency Therapeutics seem to be making significant headway. Competition has replaced collaboration.

Why is hearing so hard to restore? We can fully correct vision loss but fumble when it comes to hearing loss. A $500 pair of glasses corrects a complicated vision loss like mine (myopia plus astigmatism), but my $3,000 hearing aid and $10,000 cochlear implant can only approximate normal hearing.

There is a flip side to this, however, a plus in the ability to restore hearing. We can provide adequate hearing in those with profound loss – and in children and others often more than adequate hearing. A cochlear implant allows people who are functionally deaf to hear. We don’t yet have a similar miracle treatment for profound vision loss. There is no cure for blindness, and no treatment at this point. It’s an interesting paradox, with biology at the core.

Finally, though, there’s a chance for hearing restoration, via the promising field of tissue regeneration. What follows is a detailed description of a trial that is currently recruiting participants. Potential applicants should know the history of this trial so far. Others may not want to read on. It’s long!

One of the leaders in the field,  Frequency Therapeutics, based in Lexington, Mass., is now recruiting for a clinical trial on the efficacy of its patented drug candidate FX-322 to restore hearing in people with sensorineural loss. At the moment it is the only active clinical trial to restore hearing, and it’s an ambitious one. (There are other companies working on helping sensorineural hearing loss, but most are looking at more narrow indications, like a specific disorder. Here are links to a few: Decibel Therapeutics, Otonomy, and Pipeline.)

This new study is the sixth clinical trial Frequency has conducted. Earlier trials tested safety, and to a lesser extent also measured efficacy. These trials were encouraging — with one exception, which I’ll get to.

As the company’s scientific staff explained recently in a webinar hosted by the nonprofit Hearing Loss Association of America, FX-322 is a combination of two molecules that can potentially regenerate cochlear progenitor cells, which, it is hoped, will form new sensory hair cells in the inner ear. Progenitor cells are active in utero, but so far no mechanism exists to reactivate them later in life to restore hearing. (Other species, including birds and reptiles, do have the ability restore their hearing). FX-322 is intended to reactivate these cells through a process called Progenitor Cell Activation, or PCA.

Here’s how it works: An ENT physician injects FX-322 into the middle ear. The liquid injection, a polymer, becomes a gel in the middle ear, which allows prolonged diffusion into the cochlea. Early tests on mice showed favorable changes in those cells, suggesting that they can be successfully reactivated. (If you are interested in knowing more about FX-322 and how it works, see a 2021 article in the journal Otology & Neurotology.)

In Frequency’s first trial of FX-322 on humans, which started in 2018, 23 adult subjects aged 33 to 64 with mild to moderately severe stable sensorineural hearing loss were enrolled in a study mostly to assess safety. Fifteen received FX-322 and 8 received a placebo. The company’s analysis showed statistically significant and clinically meaningful increases in word recognition in four of the 15 subjects treated with FX-322, with some nearly doubling their word scores from baseline. Two others showed improvements that were not statistically significant. FX-322 was observed to be well-tolerated in this trial with no serious adverse events. In the months following, five of the six individuals who had seen improvements in speech perception returned for testing. Three of the subjects continued to show statistically significant improvements in word recognition 13 to 21 months after the study. Several other studies of safety and administration of the drug also showed improved speech perception. It was time to focus on efficacy. Does it actually restore hearing?

But then came the setback. Ninety-five patients with mild to moderately severe hearing loss were enrolled in an efficacy study, with results announced in March 2021. This study, disappointingly, found no improvement in hearing in those treated but, paradoxically, found better hearing in those who received the placebo and in the untreated ear of those who got the drug. That’s the opposite of what one would hope. In a clinical trial you want the drug being tested to work where it’s been administered. If, instead, the drug has no effect on the treated ear, but improves hearing in untreated ears — those receiving the placebo and the untreated ear in those receiving the drug — it likely means that there is something wrong with the test. 

Frequency attributed the troubling findings to design flaws that allowed bias. For example, a single baseline measure resulted in too much variability. Further, tips on how to qualify for the trial were shared by patients on social media. Frequency accepts responsibility for the flaws that let bias into the study. The new study uses more rigorous protocols for baseline measures in addition to more stringent blinding of entry criteria.

Encouraged by favorable results in the other studies, and confident that they could make protocols more rigorous, the company decided to go forward with plans to test efficacy again. In October 2021, Frequency began to recruit participants to the new trial, which will enroll 124 participants, half of whom will receive the drug, half a placebo. Patients will receive a single injection. Prior to receiving the drug or placebo, patient hearing will be tested three times, two weeks apart, to arrive at a single average baseline. The tests will be recorded and monitored. The trial is double blind: no one involved will know who gets the drug and who the placebo. Patients will return to the testing site for hearing tests monthly for six or seven months. There are 26 sites across the country. Recruiting continues through most of this year. (To learn more about the trial, criteria for inclusion, and how to apply to participate, go to ClinicialTrials.gov.)

Part of the preparation for the new investigation was coming to an agreement with the FDA about trial design. What measure should be used to calculate efficacy? The FDA and Frequency agreed on improvement in speech recognition. Speech perception would be tested at baseline and then one, two and three months after. The tests include several standard tests of speech perception, including words-in-noise, words-in-quiet, and sentences-in-noise. Frequency and the FDA also agreed on the inclusion of a questionnaire with multiple parts to be administered to each participant at the beginning and end of the study.

Previous studies of FX-322 in mice and the safety tests in humans showed improvement in high frequency sound, which is at the top end of the area where speech recognition lies (this is mapped as the speech banana on an audiogram). High frequencies are at the opening of the spiral cochlea and thus more easily reached by the injected drug. A future study is planned on a second compound, FX-345, which is expected to penetrate further into the cochlea and thus into lower frequencies.

In agreeing on speech recognition as the measure of efficacy, Frequency and the FDA were guided by practicalities. Other measures of success ideally would have included visual evidence in the hair cells in the cochlea, as was shown in studies in mice. But it’s not possible to study changes in the hair cells in humans (except in an autopsy).

Many steps lie ahead. Carl LeBel, Chief Development Officer at Frequency, estimated a timeline: a year for this trial, ending approximately at the end of 2022. Then the results go to the FDA. If the data is favorable, testing goes into final phases. “We’re looking for an approval of FX-322 sometime in the middle part of this decade,” Dr. LeBel said, acknowledging that he was being deliberately vague.

How permanent would a clinical change be? Early tests suggest that some participants retained their improved scores longer than others. Do people with long-standing hearing loss fare worse than people newly impaired? So far, the data suggest there is no difference. Are the ears still  subject to damage from noise, aging, ototoxins? Probably.

Dr. LeBel cautioned that the researchers expect gains to be slight at first. Someone considering a cochlear implant might be able to continue using a hearing aid instead. Someone with more moderate loss could forgo a hearing aid, at least for a while. Dr. LeBel said he sees the drug as part of a patient’s overall hearing plan. “We see it fitting in and being used in a complementary way with the way devices are used today.”

Frequency’s FX-322 is a work in progress. But the fact that it is in progress, and in humans, is something to be optimistic about. Other trials at other institutions will be testing other methods. The race is on.

In the meantime, the best advice for those with hearing loss is to keep our brains in shape by wearing hearing aids or cochlear implants. That will keep speech pathways from atrophy, which would mean a harder time reviving them if – or when — a drug to reverse hearing loss comes along.

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For more about living with hearing loss, read Smart Hearing, available on paper or as an e-book at Amazon.com, or Shouting Won’t Help, available in both formats at Amazon and other booksellers.

Hearing and Healthy Aging

Katherine Bouton Healthy Hearing

Recently I was invited to write an editorial referencing two studies on the effect of hearing on healthy aging. The article has just been published, in the Journals of Gerontology. Most readers won’t be able to access it, so I’m reprinting the text here. The title is “The Importance of Hearing in Maintaining Overall Functioning as We Age.” It’s a bit more formal than my posts are, and it’s edited a bit here for clarity.

As my hearing deteriorated in the decades following my initial loss at age 30, I worried that I would go deaf. Now, I worry that I will lose my cognitive faculties. The specter of dementia looms large for people with severe hearing loss. The statistical association between hearing loss, depression, and cognitive decline is well documented. What is not known is whether the association is causal, or shares a common pathogen, or is related in some other way. To explore this, a major study, the Achieve Study, is underway to see if hearing aids help reduce the risk.

The threat of cognitive decline is often cited as a reason to correct your hearing loss—to get hearing aids or cochlear implants or other hearing devices. But as people with severe hearing loss know, these do not fully correct hearing. I have worn hearing aids for more than 30 years. Twelve years ago, I replaced one aid with a cochlear implant, when the aid stopped being helpful. Certainly, I hear better with hearing aids than without. But I can hear adequately only under the best circumstances: in a quiet environment or with 1 or 2 other speakers who speak slowly and clearly. Adding even a fourth speaker to that conversation increases the likelihood of 2 people talking at once. When that happens, I cannot follow anything.

I have long worried that my corrected but far from normal hearing puts me in the same category as someone with untreated loss. One of the articles the journal asked me to comment on confirmed my suspicion. A study by Katharine K. Brewster and others from the Departments of Psychiatry and Otolaryngology at Columbia, Age-Related Hearing Loss, Late-Life Depression, and Risk of Dementia in Older Adults, studied 8529 participants.  Of those 6478 were classified as having no hearing loss, 1102 as having treated hearing loss, and 949 as having untreated hearing loss. The last category included people who had hearing aids but had “hearing impairment despite hearing aid use.” All 8529 participants were free of cognitive decline at the start of the study.

Depressing but not surprising: Individuals with treated hearing loss were at higher risk for depression as well as dementia than those with no hearing loss. But, confounding expectation, they were also at higher risk than those with untreated hearing loss. As the authors wrote, “We expected treatment of hearing loss would be protective against adverse neuropsychiatric consequences.”

What could explain this? The first possibility is an error, meaning the results need to be replicated by future studies. There is also the possibility that hearing aid treatment itself has harmful effects on mood, which the authors thought unlikely. Their preferred explanation was that people who get hearing aids have hearing loss that is both more severe and of longer duration. This more severe loss increases the risk of depression and dementia. Because the efficacy of treatment was self-reported to clinicians—rather than tested audiometrically—it is also possible that some of those with treated loss were not receiving adequate hearing treatment.

The third explanation—that people with treated hearing loss usually have longer-occurring and more severe hearing loss—makes sense. Statistics show that it takes 7 years from the time of diagnosis to purchase of hearing aids, and often even once they own hearing aids many people rarely or never wear them.

But I would not discount the explanation that treatment has a harmful effect on mood.

People who pay $6 000 for hearing aids expect that they will work. They are often dismayed to find that even with their expensive new devices they still cannot hear in restaurants or places where there is background noise. They still need captions to hear TV. They still cannot hear at meetings or lectures. They are told they must buy more devices—assistive listening devices and remote mics. In addition, hearing aids can be troublesome—the batteries run out at inconvenient times or the vents get clogged with ear wax or the charger is not working properly. They are easy to lose. During the pandemic, many found that wearing a mask dislodged hearing aids, and sometimes they fell down sink drains or were lost on the street. Hearing aids by their very presence are a reminder of disability. All this can be very depressing!

It is thought that hearing loss may initiate a deleterious cascade of events including social isolation. Difficulty hearing may affect executive function and result in decreased cognitive reserve. Studies have shown atrophy of brain regions connected to auditory circuits. These “may explain the mechanistic links between hearing loss, depression, and cognitive decline,” they wrote. But the study found that depression was responsible for only 6% of the hearing–dementia relationship. “Hearing loss and depression are independent risk factors” for dementia, but how each affects the other to exacerbate cognitive decline or dementia is not clear.

Even if the mechanisms haven’t been explained, however, the authors advise that because hearing loss and memory problems and depression are so often found together, evaluation of an older patient with symptoms of cognitive decline or depression should include evaluation for hearing loss. This is a much-needed piece of advice. Currently, only 17 to 30 percent of physicians, including gerontologists, screen for hearing loss.

The second study presented here is more heartening or at least part of it is. The Association of Hearing Impairment with Higher Level Physical Functioning and Walking Endurance, an epidemiological study done by researchers at Johns Hopkins, using the long-term Baltimore Longitudinal Study of Aging. It found that hearing loss is linked to poorer physical function, including slower walking. The more severe the loss, as measured audiometrically, the greater the physical decline. The 831 participants with hearing loss, treated or not, overall scored worse in a test of physical performance and walking endurance than people with normal hearing. Over the 6 years of the study, they showed faster rates of decline than participants with normal hearing or mild hearing loss. Vestibular dysfunction was factored in. But, and here is the encouraging news, hearing aid users—regardless of the severity of their loss—walked significantly faster than nonusers.

The authors acknowledged that their study population was more likely to be white and have higher socioeconomic status, both associated with better physical function, than the general population. In addition, hearing aid use was self-reported with answers limited to Yes or No on whether they used hearing aids. But it is still a tantalizing finding. The authors suggest that social isolation, cognitive impairment, and reduced physical activity may play a greater role among the non-hearing aid users. Auditory clues can contribute to balance, and uncorrected hearing loss might affect vestibular function. There is also the possibility that hearing loss and poor physical performance have a common cause.

Another possible explanation occurred to me as I was reading this study. Treating hearing loss takes initiative. People who get hearing aids often must overcome hurdles like lack of access to good hearing health care as well as significant expense, because hearing aids are not covered by most health insurance, including Medicare. Maybe this same initiative contributes to better physical self-care. Just as they have taken the initiative to buy and wear hearing aids, the better performers may have tried to stay healthy in other ways, including diet and exercise.

One takeaway from both these studies is that exercise is good for you. Exercise can ease symptoms of depression (an established risk factor for cognitive decline). The finding that hearing aid users walked longer and faster than nonusers, regardless of the severity of their loss, suggests that “screening for and treatment of hearing loss may delay or slow progression of hearing-related physical decline.” In other words, get your hearing tested and treated, and your overall physical health may benefit.

For more about living with hearing loss, read  Smart Hearing, available on paper or as an e-book at Amazon.com, or Shouting Won’t Help, available in both formats at Amazon and other booksellers.

You’re Not Alone: Books Can Help You on Your Hearing Loss Journey

Katherine Bouton Healthy Hearing

Nice post on the website of Let’s Loop Seattle, which discusses books for people with hearing loss, including children. You can add your own favorites, either on the original post or on this one. I’m always looking for good new reading on the subject. I’ll be writing about Gael Hannan and Shari Eberts new book, Hear & Beyond, in a future post.

Here’s the URL (which for some reason I can’t link to the title on my page): https://loopseattle.org/2022/02/14/youre-not-alone-books-can-help-you-on-your-hearing-loss-journey/

Does Hearing Loss Affect Your Sense of Direction?

Katherine Bouton Healthy Hearing ,

Last April, the New Yorker Magazine ran an article about animal migration called “Why Animals Don’t Get Lost,” by Kathryn Schulz. The article was full of fascinating insights into animal navigation and amazing tales of seemingly impossible journeys. But one passage leapt out at me:

“The problem isn’t that humans don’t have any innate way-finding tools. We, too, can steer by landmark, and we can locate the source of sounds or other environmental cues and make our way toward them. (With sounds, we do this much like frogs: by unconsciously assessing either the intensity differential or the time delay between a noise in our right ear and in our left one.)”

If you have hearing loss, you may not have that sense of directionality. My hearing loss is bilateral and wildly uneven, which affects my ability to locate the source of a sound.  If someone calls to me from another room, I can’t tell where they are. Where are you?, I shout, to their annoyance – and mine. Although I can often hear a bird call, I can almost never find the bird. In that sense, my hearing loss does affect my sense of direction.

Photo by Isaque Pereira on Pexels.com

If you have bilateral hearing loss that is the same in both ears, however, as most age- or noise-related hearing loss is, and if your hearing is corrected by hearing aids, it seems logical that you shouldn’t have any trouble using audible feedback as a guide. But I haven’t read anything about this, so it’s only a surmise. Readers, if you have hearing loss that is bilateral and equal on both sides, do you have trouble locating the source of sounds?

Although we use our ears to locate, we don’t for the most part use them to navigate, in the sense of assessing directionality. Our hearing loss affects our ability to navigate in a more prosaic way. We can’t hear auditory signals. We need other input to aid us in way-finding.

Way-finding is an important component in designing public spaces, and it’s especially important for people with disabilities. The New York City subway is a good example. Until recently, information about route changes, elevator outages, delays, and so on were delivered by garbled public-address systems in the stations and on subway cars. Longer term information (elevator out of service for maintenance or repair) was relayed by paper signs taped to the walls. Many people were confused much of the time, whether or not they had a disability.

In recent years, the MTA has developed an Accessibility Team, including an Advisory Committee for Transit Accessibility. made up of individuals with disabilities (ACTA, I am a member), to improve access for people with disabilities. Most visible are obstacles to people with mobility disabilities who depend on the system’s notoriously unreliable elevators.

But much of what the team addresses is less well understood by the general public. These include the navigational needs of people with hearing loss, the deaf-blind, people with cognitive disabilities. For instance, the subway system includes a number of stations where many lines cross. Jay Street/MetroTech in Brooklyn is one of these hubs. Four subway lines cross, and the station has three levels below street level. A mezzanine level has fare arrays as well as staircases and elevators down to the three different platforms. Trains run on different levels, with the IND trains one level down from the mezzanine, BMT trains two levels down from the mezzanine, all connected by multiple passageways. Talk about confusing. In 2019, SWA turned the Jay Street/MetroTech station into a laboratory for testing accessibility features for subway riders.

Some existing ADA-accessible features are what you’d expect: working elevators and directions to them, hearing loops at information and help kiosks (freestanding blue-light stanchions in many stations), Braille lettering on signage. In the second half of 2019, the Accessibility team installed and tested additional, more innovative accessibility features:: Tactile interactive maps. Bright, contrasting color-coded directional floor treatments , with the colors matching the color-coded lines: yellow for the BMT (the R train), blue and orange for the IND lines (the A, C, and F). , etc). ADA blue (darker blue) indicates the accessible path of travel. Tactile floor guides and warning strips at stairways and platform edge benefit the blind — or, in the case of the platform edge, just people who aren’t paying enough attention.

Way-finding apps include NaviLens, which provides audio information, and ClickandGo Wayfinding,which offers step by step audio descriptions and accompanying high-contrast color maps, similar to the floor designs. You can see all these on the MTA’s Accessible Station webpage. Many of the tested features remain at the Jay Street/MetroTech Station, though not surprisingly the floor guides are beginning to fade.

Here are some photos from Jay Street/Metrotech Station.

Wayfinding, part of the accessible station lab at Jay St-MetroTech on Thu., October 10, 2019. Photo: Marc A. Hermann / MTA New York City Transit
Wayfinding, part of the accessible station lab at Jay St-MetroTech on Thu., October 10, 2019. Photo: Marc A. Hermann / MTA New York City Transit
Wayfinding, part of the accessible station lab at Jay St-MetroTech on Thu., October 10, 2019. Photo: Marc A. Hermann / MTA New York City Transit

Some of these accessible-navigation features would be a help to any traveler. Floor treatments in contrasting colors, clear and consistent icons on all signage, signage at eye level instead of overhead, directional markings on the floor, these benefit anyone who uses the subway, not just those with disabilities.

For the deaf and hard of hearing signage is essential. It’s another form of captioning. If you don’t have to ask for directions, you’re never handicapped by not being able to hear the answer.

So, to go back to my original question: Does Hearing Loss Affect Your Sense of Direction? Yes, it can affect the ability to locate by sound. It also may affect the ability to navigate by sound, but primarily in the sense of not being able to hear spoken directions. The inability to follow sound cues in navigation needn’t be a handicap if those directions are also offered visually. Captions are the wheelchair ramp for the deaf, as we often like to say.

For more about hearing loss, read my books Shouting Won’t Help and Smart Hearing.