Do You Dread Going to the Doctor?

Do you dread going to the doctor? Do you worry that the office won’t be able to accommodate your communication needs, that staff may be impatient, that you may get sub-standard service, or that you may leave with no idea what was said and what you’re supposed to do next?

It turns out you may have good reason to be worried. A study published in October in the journal Health Affairs, based on interviews with doctors from a variety of medical situations (primary care doctors, specialists, doctors from cities and from rural areas) found some pretty shocking attitudes about patients with disabilities. As an article in The New York Times reported, sometimes they really wish you weren’t there.

Photo by Los Muertos Crew on Pexels.com

People with mobility issues faced the biggest obstacles. Sometimes their motorized wheelchairs wouldn’t fit in the office; examining tables were too high for them to get up on. People who were obese provoked the harshest comments, with doctors saying their office scales couldn’t accommodate them. Some doctors said they’d suggested that patients go “to a supermarket, a grain elevator, a cattle processing plant or a zoo to be weighed.” These patients do pose a challenge if a medical office and staff have not been trained – and equipped – to deal with them. They also pose even more of a problem in a medical system set up to get a patient in and out in 15 minutes. But the need for accommodations is a fact of life. More than 61 million Americans had a disability as of 2016, according to the Health Affairs article.

Hearing loss can also be a challenge for the medical staff, and it’s good to remember that it is invisible. Nowhere is it more important to speak up for yourself.

HLAA’s Communication Access in Health Care program (CAHC) works with patients, providers, researchers, and policymakers to ensure that patients can communicate effectively in medical encounters. The program’s webpages include a comprehensive Guide for Effective Communication in Health Care with information for both patients and providers.  The Guide includes a Communication Access Plan, a form patients can fill out in advance of an appointment with a new practitioner spelling out what devices you use and what accommodations you need. It’s clear and simple and should be sent in advance of the first appointment. It should then be entered into your electronic health record.

There’s a lot of information on the HLAA site, so if you don’t have time to delve in there, here are some simple measures you can take to help yourself.

In the reception area. Make sure the staff knows you will not hear when they call your name. Point to where you will be sitting. Remind them again after 20 minutes or so that someone needs to come right up to you and say they are ready for you. It would be great if more doctors’ offices had the kind of devices used in big restaurants, which light up when your order is ready. A very simple and inexpensive fix to an everyday problem. It would also be great if medical reception areas had hearing loops, but most don’t.

Clear masks. Most medical facilities will not have these. If you feel it’s essential that you read lips, bring along some FDA-approved clear medical masks. Remember that masks can’t be shared, and that they are expensive. This is probably not your best bet. Once you know the office staff, you can ask if the medical person in the room with you might take off their mask while you keep your own on. This is not something to count on, especially in areas where flu or Covid are rampant.

Captions. Bring your own. I have an iPhone and I use the Otter app. This takes some preparation in advance, as Otter works best using WIFi. You’ll need the name of the hospital’s patient WiFi and the password, which is usually posted. If you’re not familiar with Otter, practice before you try it at the doctor’s office. Here’s a link to some useful instructions. Don’t forget that you’ll need to allow microphone access. For those with Android phones, Google Live Transcribe provides the same service, with the same limitations (for best simultaneous transcription you need WiFi). Both apps provide a transcript that you can download later, which is helpful if you’re not sure you got all the information during the visit. There are other captioning apps, but these are two of the most popular.

Telehealth. Obviously there are times when a physical exam is essential, but for follow-up visits telehealth is increasingly an option. You and the doctor or other medical professional communicate by a secure service that ensures that HIPAA regulations for patient privacy are observed. A larger screen is good because you will want to get captions if they are offered. My small iPhone is not big enough but a tablet or computer would be. If the system doesn’t provide captions, and if the ability to read lips on the screen isn’t completely helpful, you can set up your phone next to your computer or tablet and follow along with Otter or Live Transcribe. Again, this has the added advantage of providing a transcript. The organizer of a Zoom meeting can activate Otter captions.

Never underestimate the usefulness of old-fashioned pad and paper. It is also helpful to write out your questions in advance.

At times in the past when my hearing was really bad, my ENT would type his questions to me on his laptop and then show them to me. This was a godsend. Luckily I’m not often in such a desperate hearing situation.

Bring a partner to the appointment. But make sure the doctor is talking to you, not your companion. This may take some nudging and reminding.

Finally, after you get home, figure out how to use the Patient Portal. This is a fairly new element in health care and I find it invaluable. The doctor posts notes taken during the appointment, as well as more formal observations later on. All test results are posted on the Patient Portal. (Be aware that you may see the test results before the doctor has had a chance to talk to you about them, and if they include bad news, this can be upsetting.) You can also make appointments on the portal, email your doctors with questions about simple things like prescription refills and more complicated things like requests for interpretation of test results. Your other doctors in the same health system may also be able to see the information, which can help with diagnosis and treatment of conditions that may be related. It also helps prevent prescription overlaps or dangerous combinations of prescription and non prescription drugs.

Let’s hope that HLAA’s guide will become standard reading for medical professionals, and that medical offices will institute some much needed accessible features for those who are deaf and hard of hearing (as well as for those with other disabilities). But in the meantime, there is probably no place where good communication is more important, so be prepared to provide your own accommodations.

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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 or paperback, on Amazon.com.


Do You Know What Caused Your Hearing Loss?

I lost the hearing in my left ear suddenly, when I was 30. One morning, working at home, I picked up the phone to answer a call and couldn’t hear anything. I switched ears. The right ear was fine, and I talked to whoever had called. When I hung up from that call, I called various automated numbers – in those days you could call the weather, the time, and others. I switched from ear to ear, no sound in the left, normal in the right.

There had been no indication that anything was wrong. No pain, no popping or whining. But as the day wore on I realized everything was too loud, I was suffering from hyperacusis. And I felt dizzy. I went outdoors to clear my head, but the street noise was assaultive, so I scuttled back inside again.

I found an ENT, who ordered an MRI to rule out an auditory neuroma or structural damage in my ear. I had a series of blood tests to rule out autoimmune disease. All the tests were  normal. My diagnosis was idiopathic sudden sensorineural hearing loss. “Idiopathic” means of unknown origin. Ninety percent of sudden sensorineural hearing loss is idiopathic.

For years, the term idiopathic and the lack of an explanation for my loss tormented me. If I could find the cause, maybe I could find a cure. Over the next three decades, I lost the remaining hearing in my left ear and my right ear declined as well. By the time I was 60, I was functionally deaf. And angry. How could there be no explanation for such a monumental change?

Idiopathic: A disease or condition for which the cause is unknown.

Eventually, I learned to hear again with a cochlear implant and a hearing aid. But even as the technology got more and more sophisticated, the science lagged behind. No one could find a cause, and no one could find a cure. So my rage and despair continued. These emotions are not good for your health.

In her new book “The Invisible Kingdom: Reimagining Chronic Illness,” New Yorker writer and poet Meghan O’Rourke writes about her decade-long battle with an amorphous, systemic disease that her doctors now think was lingering Lyme disease complicated by other autoimmune conditions. These conditions worked together to leave her in debilitating pain and brain fog for long periods of time. Perhaps most frustrating was the lack of an explanation for her illness. She writes that she “craved” a diagnosis. Diagnosis “is a form of understanding,” she writes. The term itself derives from the Greek word “to know.” For her, that knowledge “brings the hope of treatment or cure.”  Eventually she got a partial diagnosis and was able to resume a more normal life – and to write an excellent book.

I had a diagnosis: sudden sensorineural hearing loss. But once my other ear became involved and as the loss worsened to profound in the original ear, that term no longer applied. I was left with no diagnosis, no explanation, no cure. And ever worsening hearing.

Eventually – and I mean really eventually (think decades not years) — I accepted that I’d never know what the cause was. I was able to come to terms with it. Only then could I start making a new life with my hearing loss. It took hard work, supportive friends, sophisticated technology, shared experiences and tips from others — primarily through the Hearing Loss Association of America. I’ve been president of the New York City Chapter of HLAA (with a short break) for 7 years. I served on the national board of HLAA for 6 years. Those years — and my board colleagues — taught me how to live with hearing loss.

These days I hardly ever think about the mysterious origin of my condition. I still get frustrated with my hearing, but I no longer obsess about the cause. Hearing loss is part of who I am.

That, by the way, is why we say a person “has hearing loss” instead of “is hearing impaired.” “Having hearing loss” is one facet of your identity, part of who you are. Being “hearing impaired” puts the impairment front and center in defining who you are. You are your disability. This person-centered phrasing is correct for any disability. Person first, disability as one of many aspects of your identity.

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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 And “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook or paperback, on Amazon.com.

At Long Last, OTC Hearing Aids. How Do You Choose?

I’ve already written a lot about OTC aids, including What Do Over the Counter Hearing Aids Mean for You? and Over the Counter Hearing Aids: Coming Soon to a Store Near You. So I don’t have a lot new to say today, as OTC aids finally go on sale at pharmacies, Walmart, Best Buy and others. But the market can be confusing — to the point of overwhelming — for first time buyers, so here a couple of important reminders (below). And here is a link to a good Washington Post article laying out the basics: Hearing aids are now sold over-the-counter. Here’s how to pick one.

One surprising fact in the Post article is the cost of the aids: “Retailers have announced over-the-counter hearing aids ranging from $199 to $3,000.” Wow, if you’re going to pay that kind of money for a hearing aid, you are much better off going to an audiologist and getting a proper fit. You can also get an excellent brand-name hearing aid at Costco, with the advice of an audiologist or hearing instrument specialist, for far less than $3000. The Post doesn’t say which retailers are charging those high fees (although Best Buy has announced that it will have at least one at that price), but buyer beware. If you’re paying that kind of money, get the advice of a licensed hearing professional.

The article mentions a few other things a first-time hearing-aid buyer might fail to consider, which experienced users can tell you are crucial to a good experience. One is Bluetooth connectivity: if your hearing aid connects to your smart phone by Bluetooth, you’ll be able to hear not only phone calls but podcasts, recorded books, movies, your grandkids’ videos and so on — as if you still had excellent hearing. The Bluetooth signal takes the sound directly to your ear. You can also connect to your TV by Bluetooth, as well as to your computer and other electronics.

OTC hearing aids are not required to have another feature that experienced users vouch for: a telecoil. It’s a tiny element, often called a T-Coil, that allows you to hear in large areas like the newly renovated Geffen Hall (formerly Avery Fisher Hall at Lincoln Center in New York City), which has installed hearing loops in the performance spaces as well as at ticket counters, shops and other locations. Here’s an explanation of loop technology from Metro Sound Technology, which installed the Geffen loops. Many theaters, places of worship and municipal buildings around the country and especially in the U.K. also have installed loops. Just look for the Hearing Loop sign, which should be prominently posted.

Loop technology, like Bluetooth technology, takes the sound right to your ear. Neither of these technologies requires any additional equipment. You just change the program on your hearing aid.

The Post article lists a number of other features to look out for, perhaps most important is a 30 to 45 day return policy. It takes a while to get used to hearing aids. They may not sound right at first, but wearing them daily will give your ears and brain time to adjust to the new sound. If they’re still not right after a few weeks, state laws require free returns. You may need another style or brand. If you’re working with an audiologist, your aid may just need some tinkering with the programming.

As I’ve said before, I’m all in favor of Over the Counter availability for hearing aids, in the hope that more people will wear hearing aids, that competition will bring down prices, and that stigma will be reduced. Starting today, we’ll see exactly what’s coming on the market.

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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 And “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook or paperback, on Amazon.com.

Summer Blahs. Hello September!

I’ve been in a summer slump – too hot, too wet. But starting this weekend I’ll be gearing up for an active fall.

Sunday is the New York City Walk4Hearing. This event is educational, supportive, and it is HLAA’s principle fundraiser. As president of the NYC chapter, I’m a member of the chapter’s WalkNewYork team. If you’d like to support our chapter and the national office at the same time, please click here and make a donation. Large or small, everything is welcome.

Better yet, come join us. Our team and teams from all over the Metropolitan area will gather at Manhattan’s Pier 45, right by the Hudson River at 389 West Street. Spectacular views of the Statue of Liberty, and much more. The Walk starts at 10:30 but come early and enjoy the activities for kids and adults.

Two days later, on Tuesday September 20, the first of our monthly chapter meetings will take place. We have a panel made up of hearing professionals who have hearing loss themselves. Some went into the profession for that reason, others developed it later in life.

Our meetings are on zoom, with CART captioning provided. All are welcome. You can read more and register for the meeting here.

Here’s the announcement: HLAA-NYC: 6 pm-7:30 pm.   Join us for “Hearing Professionals with Hearing Loss,” a panel discussion featuring ENTs and audiologists who will talk about how their hearing affects their work as clinicians. The panelists—some newly minted, some recently retired—are Viral Tejani, Paul Hammerschlag, Terrence Williams, and Sophie Racine. Sophie, who received her AuD at CUNY, now works at Seattle Children’s Hospital.

If you want to know more about the programs your Walk donation will support, here is some information.

In the past year, the New York City chapter has been instrumental in getting open captioning in NYC movie theaters, as well as captioning of intermission interviews during the Metropolitan Opera’s HD movie theater screenings.  Chapter members also led the drive for a NYS Commission for the Deaf, Deaf-blind and Hard of Hearing, which has been ratified by the state legislature and awaits the governor’s signature. Our meetings with Lincoln Center resulted in the inclusion of multiple hearing loops in the plans for the renovated Geffen Hall (formerly Philharmonic Hall). We are also working to get city legislators to reinstate mandated in-school screening for hearing loss. New York City is exempt from the NY State mandate. We believe screening is essential for the successful development and education of children with hearing loss.

And of course there are our 10 monthly chapter meetings. Go to hearinglossnyc.org for more information.

 On the national level, HLAA has worked tirelessly to change the way hearing aids are sold, and this August the FDA finally issued its guidelines for Over the Counter Hearing Aids. They should be in stores by October and will provide hearing aids at a significantly lower cost. Right now, OTC aids are for those with mild to moderate hearing loss. For those with more severe loss, this new competition may help bring down the current price, which averages $5000-$6000 per pair. 

The next step is to get health-insurance to cover the cost of hearing aids.  Currently, Medicare does not cover hearing aids, a proven health benefit to the 30 million older Americans who need them. HLAA has targeted Medicare coverage for hearing aids as one of its principal missions. When Medicare sets a policy, private insurers often follow.

 Hearing loss is not just a minor nuisance associated with growing older. It affects people of all ages and has been linked to depression, lost employment, cognitive decline and a greater risk of falls. It is usually totally treatable. All that stands in the way is money.

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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 or paperback, on Amazon.com

A Simple Fix for Better Hearing

Want to know a simple trick for better hearing? Pay attention.

This isn’t as much of a no-brainer as it sounds. It’s very easy to let your mind wander when someone else is speaking. Maybe you’re distracted by something in your peripheral vision, maybe you’re thinking about what you’re going to say in reply, maybe you’re bored and thinking about how to get out of this particular conversation. I’m sure readers can name many everyday distractions.

If you can really focus your eyes and ears – and most importantly, your brain – on a speaker, you probably will comprehend more. In the past I’ve thought of this as “mindful listening”. Instead of saying “What?” halfway through the speaker’s sentence, make yourself wait until he or she has finished, take a moment to process everything you did hear, and then you may find yourself understanding in retrospect what the first few words were. If you still haven’t figured out the first few words, you can use your comprehension of the rest of the sentence to ask a specific, relevant question. “Who did you say almost ran over you with her cart at the supermarket?”

Many of us – or maybe even all of us — with hearing loss have been accused at one time or another of not paying attention. It’s as if they’re saying: “It’s your own fault that you aren’t hearing me.” This kind of comment is infuriating and inexcusable. What I’m talking about, rather, is a reminder to yourself to stay focused, to actively listen, to be mindful.

Equally important is to pay attention to sounds you can’t identify. Do your best to figure them out and you may recognize them the next time.  You “may,” that is. Not you “will.” Despite long-term hearing loss, I still have trouble distinguishing children shouting and playing from dogs barking in play. Not if I’m looking at them, of course, but if they’re around the next corner, they fool me every time.

People who get hearing aids or cochlear implants use this focus to teach them how to distinguish one sound from another with their newfound ability to hear. They have to learn to listen again, in a new sound environment. This is essentially what auditory rehab does: it teaches you to focus on sounds, so that you recognize them the next time.

As the brilliant neuroscientist Nina Kraus writes in her book “Of Sound Mind,” the process of learning to listen is lifelong, and it is accomplished by paying attention:

“We have spent a lifetime learning what is important, and with this learning we have taught our brains which sounds, sights, and smells require our attention and which can be profitably ignored. David Strayer, University of Utah psychologist, said, “Attention is the holy grail. Everything that you’re conscious of, everything you let in, everything you remember and you forget, depends on it.” Dr. Kraus is the speaker at our HLAA chapter’s October 18 meeting, which is free, captioned and open to all. For more information go to our website, hearinglossnyc.org and click on “programs.”

Paying attention in other areas as well makes a big difference. I’m a fast and proficient reader. But sometimes I realize that I’m reading with my eyes but not with my brain. I can’t remember a thing about a paragraph or article I just read. So I go back and read it again, this time making sure the eyes are connecting with the part of the brain that is going to decode these signals.

I’d be interested in hearing others’ experiences with the senses. What other kinds of signals can be detected but not processed by the brain? Please share your thoughts 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.

Over-the-Counter Hearing Aids: Coming to a Store Near You.

The FDA today announced its regulations for over-the-counter hearing aids, five years after Congress passed the Over-the-Counter Hearing Aid Act of 2017, which was signed into law by President Trump.

The regulations specify that these aids — which can be purchased at pharmacies, electronics stores like Best Buy, big-box stores or online — are for people with perceived mild to moderate loss. They are expected to be available as soon as October.

New to hearing loss? An OTC aid might be the answer.

Those of us in the hearing-loss community are sure to be inundated with sales pitches and opinions, although most of us have severe enough hearing loss that OTC aids won’t help us. Here’s a link to an HLAA tip sheet on OTC aids. And here’s a link to the NIDCD’s new website on OTC aids.

And here’s a link to a post I wrote in October 2021, when the FDA first issued draft regulations. What Do Over-the-Counter Hearing Aids Mean for You. I’m going to reprint the post here, because It’s still relevant:

October 19, 2021:

Earlier this week, the FDA issued its long-awaited draft proposal on Over-the-Counter hearing aids. Over the counter means direct to consumer, without the intervention of an audiologist.

The FDA’s proposal followed four years of discussion about OTC aids, dating from the passage of the bipartisan Over the Counter Hearing Aid Act in August 2017. The FDA had three years to assess comments and proposals from stakeholders. These include consumer groups like The Hearing Loss Association of America and AARP, professional groups like the Academy of Doctors of Audiology (ADA) and and the American Association of Audiology (AAA), among others.

The FDA’s draft guidelines allow for adults 18 and over with “perceived” mild to moderate hearing loss to purchase hearing aids over the counter – online or at retail outlets – without a medical exam or a fitting by a hearing-aid professional. These non-prescription hearing aids will constitute a new class of FDA-approved hearing aids.

What we now think of as FDA-approved hearing aids – the prescription aids made by Phonak, Widex, Starkey, etc. for moderate to profound loss — will continue to require an audiologist or hearing-aid specialist for fitting.

Most readers of my column have fairly severe hearing loss and already have hearing aids or cochlear implants. Are these OTC hearing aids for you? No. But they will benefit us in other ways.

A lot more people will be wearing hearing aids. People who have hesitated up till now because they didn’t have access to an audiologist, or didn’t want to spend $5000-$6000 for a pair of hearing aids, or who simply didn’t want to wear hearing aids because of stigma, may find that their formerly “manageable” hearing loss is really not worth it if they can easily purchase a hassle-free lower priced aid. The more people who wear hearing aids, the more normal they become and so stigma begins to drop away.

A lot more people will be wearing aids for another reason as well. Demographics. More and more people are getting older every day, and with increased age generally comes increased hearing loss. Age-related hearing loss often begins as mild or moderate loss, and these OTC hearing aids may just right for those new to hearing aids.

As stigma drops away, so does secrecy. People with OTC hearing aids may realize that even with the aids, they prefer television with captions. If television, why not movies? If movies, why not town hall meetings? And so on. So demand for accessibility will grow. It will no longer be the relatively small group of people with moderate to severe or profound loss who are demanding accommodations.

Here are some things I hope will happen.

Although everyone should have a hearing test before buying any kind of hearing device, the work of audiologists may change. With fewer patients with mild to moderate loss, they may have more time for the kind of training and rehabilitation that people with more severe loss need. They may lobby to have insurance rules changed to allow reimbursement for training and rehab. Audiologists have a role even in OTC hearing aids. Having your hearing tested is not just to assess the degree of loss, it’s also to rule out potentially serious conditions like an auditory-nerve tumor or easily reversible conditions like ear wax. Perhaps a new model of audiology would allow a simple hearing evaluation for a fee.

Once hearing aids are divided into over-the-counter and prescription categories, insurers – including Medicare – may cover prescription aids, which serve a medical need. Or alternatively, with hearing-aid prices driven down by the competition of OTC aids, insurers may realize it’s wise to cover all hearing aids, which have a clear health benefit. Acting FDA Commissioner Janet Woodcock, M.D., was quoted in Hearing Health Technology Matters: “Hearing loss has a profound impact on daily communication, social interaction, and the overall health and quality of life for millions of Americans.”

For more on the FDA’s ruling, read HLAA’s comments here.

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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.

The Emotional Side of Hearing Loss

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.

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

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.

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.