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.


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

Has the Pandemic Affected Your Hearing?

Captions have become ubiquitous during these many months of isolation. Is that an unmitigated good for those with hearing loss? For me, at least, maybe not.

When I watch TV or streaming video, it’s captioned. I set the volume so I can hear the spoken words to supplement the captions, but it’s the other way around. The captions fool me into thinking I’m hearing.

My phone is captioned, and again the captions seem to clarify the sound.  

Meetings online are captioned. Thank goodness.

This is all very convenient, but is it good for my hearing?

Are you really listening?

I see family and friends in person, and after a brief adjustment period, I’m usually okay. Familiar faces, familiar voices. No masks. I read lips to supplement. I sometimes use Otter captions.

But lately I’ve noticed that I’m not hearing what I used to. I have trouble understanding people I used to be fine with. I’ve always been able to follow my Pilates teacher if she’s wearing my companion mic, but now her words, muffled by a mask, are lost to me.

Unfamiliar voices, masked or not, are more difficult than they used to be.

Routine cash register comments?  If it’s the pharmacy, it’s probably, “Date of birth?” But the other day one stumped me. The masked supermarket clerk behind her plexiglass shield repeated her question three or four times. Finally, I took a stab at “No, thanks.” It was only when I was out of the store that I realized she was asking, “Do you want to use reward points for this?”

Like many of us during the pandemic, I‘m alone much of the time. I don’t feel isolated, because I keep in touch with friends and family by FaceTime, email, and phone calls. Most days I exchange routine greetings with people on the street, or with the guy I buy my newspaper from, or from other dog walkers. But exchanging pleasantries doesn’t require real hearing.

It’s possible the problem is that I’m just out of practice. Or maybe I’ve gotten lazy with my hearing: I don’t try to distinguish sound because I don’t need to in my captioned world. I’m hearing but not listening. A few years ago I wrote about “mindful listening” in a post on auditory rehabilitation. I may not be following my own advice.

Is this a pandemic side effect? Has isolation affected my hearing? Or, maybe, has isolation affected my listening? I’ve made an appointment with my audiologist to check my heairng, both with and without hearing aids. If it turns out my hearing is unchanged, I’ll have to chalk it up to lazy listening.

Readers, have you had a similar experience? Did you have your hearing checked? Was it your hearing or your listening that was causing the problem. Please share in the comments.


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

Considering a Cochlear Implant? You’re Never Too Old.

Is there  an age limit for cochlear implant recipients? I asked this question of several cochlear implant surgeons around the country. Their answer? Never.

All have implanted patients in their 90s and, as Anil Lalwani, of New York-Presbyterian/Columbia University Irving Medical Center said, he “routinely” operates on patients over 80. His oldest patient is 93.

Surgeon Jay Rubinstein, at the University of Washington Medical Center, has performed cochlear implant surgery on a 96-year-old. Like the others, he thinks chronological age is -not the issue, it’s a person’s overall health.

In other words, it’s not so much how many years you’ve lived as how well your body has held up. In April 2014, Mollie Smith, 99, became the oldest cochlear implant recipient in Europe.

Cochlear implant surgery takes about two to three hours and requires general anesthesia or heavy sedation, so the ability to tolerate anesthesia is essential. Even so, a 2009 study by Dr. Lalwani and others, found that cochlear implantation in the elderly carries minimal risk from anesthesia.

One of the important preexisting conditions that may preclude surgery is moderate or severe heart and/or lung disease, which could make anesthesia potentially dangerous, said Rick Hodgson, a surgeon with Head and Neck Surgical Associates in Portland, Ore. The oldest patient he has implanted was 92 and he’s doing well, Dr. Hodgson said, noting that as a surgeon he looks more at “biologic age than chronological age.”

Darius Kohan, an otologist-otolaryngologist in New York (who was my cochlear implant surgeon at New York Eye and Ear Infirmary), told me he implanted a patient who was 95 years 6 months old. The patient is still using the implant 21/2 years after surgery.

Even dementia may not be a disqualifier, the surgeons said, assuming that the patient is not violent or likely to destroy the external parts of the implant. A study published last summer on implantees with dementia found a significant cognitive improvement a year later. The patients also received regular auditory rehabilitation. It was not clear from the study whether it was the implant itself or the aural rehab that made the difference in improved cognitive abilities.

Jack Wazen, a surgeon and  partner at the Silverstein Institute and director of research at the Ear Research Foundation in Sarasota, Fla. (and a fellow board of trustees member with me for the Hearing Loss Association of America), was the most conservative of those interviewed on the question of dementia, saying he routinely implants those with mild to moderate cognitive decline, but not those with severe decline.

All agree on the importance of auditory rehab for older patients. As Dr. Hodgson put it, “Auditory rehab helps get the most out of the process. This is amazing and life-changing technology, so why wouldn’t we want to maximize the impact on someone’s life?” He added that younger implant recipients might still be in the workforce and get stimulation from their everyday environment. The older recipients are less likely to get that stimulation. Also important, as all the surgeons agreed, is a social support system. This doesn’t necessarily mean a companion in the home, but a regular conversation partner is essential. Social interaction is important in general for quality of life.

The one issue on which the surgeons differed was which ear to implant: the worse or the better one. With younger implantees, the decision is usually to implant the worse ear, to preserve the natural hearing in the good ear, often using a hearing aid in the good ear. But an elderly person may have been deaf for some time in the bad ear, and thus less likely to benefit from the implant.

Although most said that they would consider implanting the deaf ear, they might not if the ear had been deaf for a long period of time. Dr. Wazen specified five years or more. Dr. Hodgson pointed out that “the longer the duration of hearing loss, the higher the chance of diminished benefit due to deterioration of sensory elements in the inner ear.”

Both Dr. Lalwani and Dr.  Kohan said they would implant the worse ear. Dr. Kohan’s reasoning is that if the patient is still able to hear with the hearing aid ear, there may still be enough plasticity in the brain, with crossover from the nonhearing ear, to make an implant in the deaf ear function. Dr. Lalwani went further: “I would always implant the deaf ear. One does not lose anything from doing so. If the outcome is less than satisfactory, the other ear could always be implanted down the road.”

As for outcomes, all the physicians agreed that older recipients do well with cochlear implants. Dr. Kohan mentioned benefits like delayed mental deterioration, better quality of life and more independence.

Dr. Wazen is completing a study comparing the results among patients over 80 with those under 80. The study found no differences in healing or complication rates. All patients did better with the cochlear implant than they had with a hearing aid. The study did find that speech recognition scores with implants were better in the younger group. This may be due to a number of factors, Dr. Wazen said, “including length of deafness, poorer cognitive function [in the older group] and aging changes in the brain.”

So if your doctor recommends an implant, go for it, no matter what your age. “When elderly patients tell me they are too old for a CI,” Dr. Rubinstein said, “I tell them age is not important unless they are a cheese.”

This post first appeared on AARP Health on February 22, 2016.

Driving While Deaf: Not Taking My Own Advice.

I am not Deaf and not a sign language user, but I am extremely hard of hearing and I know how frightening it can be when the police pull you over and you’re unsure you’ll be able to understand them — or be able to make yourself understood. I also realize, thanks to my own recent traffic stop, how easy it is to make the kind of common mistakes that can get you in trouble.

These thoughts were prompted by the recent police shooting death in North Carolina of 29-year-old Daniel Harris, who was Deaf, is a reminder for all of us with hearing loss that we need to be extra cautious when pulled over by a police officer.

According to news accounts, Harris, who uses American Sign Language, was shot and killed after failing to pull over during a traffic stop near Charlotte. He was pursued by a state trooper as he drove to his own neighborhood, where he then got out of his car. The North Carolina State Bureau of Investigation is conducting a criminal inquiry into the incident and has declined to give further details.image3-1

Did the trooper not understand what Harris was saying to him, or vice versa? Investigators have not commented on whether Harris’ deafness played a role, but his brother believes that if the officer had known he was Deaf, things might have ended differently.

So what happened to me?

This summer as I was driving on the Massachusetts Turnpike (not speeding, I might add) I noticed a police car behind me in the lane to my left. He stayed there for many miles before finally turning on his lights to pull me over. The turnpike is a dangerous road, so I drove on to the next exit before pulling over.

As the officer got out of his car, I should have left my hands on the steering wheel where he could clearly see them, but instead I reached up to get a visor card identifying me as a deaf driver. I also reached over to the glove compartment (a risky move, I now know) to get my registration.

I should have watched as he approached the car so I would know on which side of the car to expect him, but I was too busy reaching for things. The next thing I knew, the officer was at the passenger side window. I was already confused about why I’d been pulled over, and I was completely nonplussed to see him on that side of the car. I’m not even sure I remembered to say, “I’m very hard of hearing,” which I normally do.

He ignored my offered registration and the “Driver is Deaf” visor card and said brusquely that, according to his computer, my driver’s license was expired. I didn’t understand what he was saying. I have a valid driver’s license. But then I remembered that four years ago I had replaced my Massachusetts driver’s license with a New York one, which is my official mailing address. I handed him the New York license. He looked it over, then grudgingly handed it back and walked away.

“Wait!” I cried. “I don’t know how to get back on the highway.” He didn’t turn around. I tried shouting. I thought about getting out of the car but decided that would be really stupid. I tried to wave him down as he drove by, but he ignored me. I was flustered and furious, but I eventually found my way back to the highway.

Other than his rudeness, nothing bad happened. If I weren’t a middle-aged white woman driving a VW Golf — who has learned to control her temper — it might have been different.

But I realize this kind of situation can be difficult and even dangerous for someone with hearing loss. Remember, a police officer can’t tell by looking at you that you’re Deaf or hard of hearing. Even if you tell the officer you have hearing loss, he’s still going to expect you to answer his questions. You need to be careful that you understand what the officer is asking. For example, unless you are sure he is asking for your registration, do not just reach over to the glove compartment to retrieve it, which could be misinterpreted as reaching for a weapon.

The situation is even more difficult at night, when the headlights from the police car behind you may blind you and make lipreading (also called speechreading) difficult. What if the officer doesn’t even get out of the car, but blares through his loudspeaker, “Get out of the car!” Or did he say, “Don’t get out of the car”? This kind of misunderstanding could get you killed, or at least roughed up. Unfortunately, the addition of hearing loss to a tense situation increases the likelihood things can escalate.

The American Civil Liberties Union and the actress Marlee Matlin, who is Deaf and married to a police officer, teamed up to produce an excellent video on how to handle a traffic stop if you are Deaf or hard of hearing. It has useful advice both for those with hearing loss and for those who hear perfectly. Matlin uses American Sign Language in the video, but it is also captioned and there is a voice-over for the hearing.

Another thing that can help is a visor card, informing police that you are Deaf or hard of hearing. The Driver is Deaf card from the Center for Hearing Loss Help can be ordered for $4.95.

There has been a lot of discussion on my website on exactly where to display the card. One suggestion, to tape it to the back window so an officer can see it as he walks up to the car, was nixed by those who thought such a prominent display would make drivers a target for muggers. The center suggests clipping the visor card to the driver’s side visor. You might also consider a second one for the passenger side visor as well.

The center also offers these other tips if the police pull you over:

  • If it is dark and you are able to, stop under a street lamp, or pull into a lighted parking area. This will make it easier for you to read lips.
  • Open your driver’s side window all the way so the officer can see you.
  • If it is dark, turn on your dome light.
  • Place both of your hands on the steering wheel well before any police officer approaches your vehicle. Police officers want to see both your hands at all times. Keep your hands on the wheel until after you establish effective communication with the police officer.
  • Show the officer your visor card and the instructions on the back so he knows how to effectively communicate with you.

You should also watch the officer closely as he gives you instructions. If you don’t understand the officer’s words, repeat: “I am Deaf [or hard of hearing]. I did not understand what you just said because I couldn’t hear you. Would you please write down what you just said?”

As the Harris case shows, those of us with hearing loss need to be extremely cautious if we are pulled over by the police. The visor card, and watching the video, is a good place to start.


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Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on


Yes, I Have Hearing Loss, Talk to Me Anyway

This bears repeating: It’s important to be included in the conversation.

True friends and understanding family will do that. They’ll repeat, they’ll rephrase, they might even spell it out. One friend pulls out a notebook and jots down the key words. It helps if I parrot back the parts of the sentence I did hear, so they understand what I missed.

But not everyone is as patient. How many times have I heard, “Never mind, it isn’t important”? Mimages-1aybe it isn’t, but I still want to hear it.

Nevertheless, constant repetition of something trivial does get tedious for the speaker — and for me! —  and so, sometimes in a social situation, I just let it go. I’d rather the person keep talking to me than understand every word.

(This is not something I’d do in a business meeting or in any important discussion, by the way. It’s just for social chitchat. And before you start lecturing me, I do use assistive devices, like an FM system or a Roger Pen. Sometimes I still just can’t hear.)

Is this wise? Do I really want to hear only part of a conversation? Maybe, depending on who the speaker is. What I do want is to be included in conversation. I want to be invited places. I want to be seen as someone fun and interesting, rather than as a constant drag on conversation. I know readers will criticize me for saying this. We people with hearing loss, especially advocates like me, are supposed to demand our rights, not lie down and surrender.

So why do I do just that — lie down and surrender? Why do I accept only part of the conversation? I think I have a good reason. A huge danger for people with hearing loss is isolation. Isolation is not good for your mental health. It can lead to depression and cognitive decline.

If I asked for clarification of every word, social chitchat would quickly bog down. As a result, I might not try again next time. That’s how isolation occurs.

For now, I listen closely, I try to gauge what I really want to hear and selectively ask the speaker for clarification. The rest of the time I smile and nod, or frown and sigh, or raise my eyebrows, or laugh appreciatively. How do I know to do this without knowing what was said? I follow the speaker’s face. The clues are all there. Of course I run the risk of a grossly inappropriate misreading of the speaker’s face. But that’s a risk I’ll take to keep people talking to me.


For more about living with hearing loss, read my books “Shouting Wont’ Help “and “Living Better With Hearing Loss,” both available at


This article first appeared in a slightly different form on AARP Health.