Are Your Hearing Aids Surviving Social Distancing?

Mine are getting a workout. And the batteries are showing it.

I have an Oticon Made for iPhone hearing aid, which means that whatever I hear via the phone is channeled by Bluetooth to my hearing aid. This is wonderful!

I can hear phone conversations, I can listen to podcasts, I can watch and hear online classes, I can watch a YouTube video with sound. Recorded books go through the Bluetooth to my hearing aid. So does the audio of a meditation app, like Calm.

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It’s spring! Can you hear the birds?

I also use the phone and bluetooth when I am following an online exercise class. I use my laptop for visuals and phone for audibles. I connect to the class on both devices and then press “play” on both simultaneously. That way the video is on my laptop, the audio is in my ear.

The main problem is that all this use drains the battery at a significantly faster rate than a hearing aid battery without using Bluetooth. This is true with standard disposable batteries as well as rechargeable ones. Here’s a fairly technical discussion of battery capacity with both disposable and rechargeable batteries.

I actually have only one hearing aid, and it’s doing all the work. I have a cochlear implant in my other ear, so if I wanted to connect directly to the implant as well I’d need to stream through a second device like a Roger Pen. If anyone has tried this, I’d love to hear if it works. Do the two assistive devices sync properly? The four steps it would take to sign on to yoga class on both phone and laptop, using both Roger and Oticon bluetooth, does seem a little absurd. One ear is fine.

I also have a clip-on mini mike, useful for a socially distanced conversation with a masked person on a park bench, and this also drains the battery. I just ordered a ten-pack of batteries.

The hearing aid itself is suffering wear and tear for other reasons.

I always wear a mask when I go out, which is frequently  — because I live in an apartment (no back yard) and I have a dog. Dogs need to go out at least a couple of times a day. The mask loops fit over my ears. Unfortunately it’s already crowded behind my ears, with my hearing aid earpiece in one and c.i. earpiece in the other. I also wear glasses, which take up even more behind-the-ear space. The mask tends to dislodge the c.i. earpiece, so I have to wear a hat or a wide headband to keep it in place. Somehow the hearing aid manages to get tangled in the mask.

The second damaging element is dirt. I make sure the wax guards are clean but the vent – a tiny duct that lets in just enough air to make the aid more comfortable – is clogged with wax. I can’t remember how I used to keep it clean but now the audiologist says the only solution is denture floss. She’s mailing me some. If were able to go into her office, she told me, she could vacuum it out. I wonder if I can get a special hearing-aid attachment for my Electrolux.

I wasn’t sure how to reach the audiologist but I finally emailed her. It turns out she can do much of her work through telemedicine. And good news from the CMS: Medicare and Medicaid will now cover any tele-audiology visits that would ordinarily be covered by an office visit. I’ll write about this when I know more about how it works.

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For more about living with hearing loss, read my books at Amazon.com.

Smart Hearing is a guide to everything about hearing loss. Shouting Won’t Help is my personal story of loss and renewal. Both are available in paperback and on Kindle. Available only at Amazon.com unless you can persuade your local bookstore to order one for you.

Surfer Girl Wears Hearing Aid

One of the things that makes wearing hearing aids easier is having a good role model. This is especially true of children. This year American Girl, the hugely popular doll company, named as its 2020 doll of the year Joss Kendrick, who was born with hearing loss and wears a hearing aid in her right ear.Joss photo_vertical

Like all American Girl Dolls, Joss comes with a story (which can be bought in book form) and accessories. Among Joss’s accessories is her removable hearing aid. Joss is going to have to be able to take that hearing aid out because she’s also a surfer, and we all know that hearing aids and salt water don’t mix. When Joss isn’t surfing, she’s part of a cheerleading team. All these talents require accessories, including a surfboard and swim gear, cheerleading outfits, a backpack and competition cheerleading shoes.

American Girl partnered with the Hearing Loss Association of America, with a $25,000 donation and dolls to be given out a various Walk4Hearing events in 2020. American Girl dolls aren’t cheap. Joss costs $98 and comes wearing a bathing suit, hoodie and shorts. The surfboard, cheerleading outfit, books and so on will cost you extra.

I’ve always thought of American Girl as the G-rated alternate to Barbie. When my daughter, now 33, was young, we gave her a doll, Kirsten – a Swedish American girl in the 19th century. She saved up her $2 a week allowance and money earned at odd jobs to buy Samantha, a brown-haired turn of the century (19th) schoolgirl. In my memory Samantha wore glasses, which would have made her a precurser to Joss, but I think my memory is wishful. Some of my feminist friends with girls resisted the craze, but my husband and I didn’t see any harm in it, and in fact our daughter is now a highly competent adult with her own business.

Another good role model for children with hearing loss is El Deafo, Cece Bell’s graphic memoir for children. As I wrote in the New York Times Book Review in 2014:

It takes a bit of an inner superhero to get along as someone “special” in a classroom full of “normal” kids. Bell’s book should be an inspiration for those who are “different,” and it should help others to understand just what being different means. Required reading isn’t always fun reading. “El Deafo” should be the first and is definitely the second.

Other role models include the young heroine of the Amazon Prime Video series “Undone,” 28-year-old Alma, whose cochlear implant is at first incidental to the story, but later plays a role in the plot. Sports figures are also role models, including Tamika Catchings. Here’s an interview with Ms. Catchings, just before the 2016 summer Olympics and tied to the publication of her memoir Catch a Star: Shining Through Adversity to Become a Champion. This link is to Amazon but it is available from many booksellers.

Readers, if you have a favorite role model, especially one for young people, please let us know about it in the comments section.

 

For more about living with hearing loss, read my books: Smart Hearing and Shouting Won’t Help, available in paperback or as a Kindle ebook on Amazon.com

Medicare and Hearing Aids

Medicare doesn’t cover hearing aids. This is the one thing about hearing loss that never fails to surprise people new to the field. The fact that Medicare doesn’t cover hearing aids even for the most severe and disabling hearing loss is even more shocking. Despite universal agreement among health care practitioners that untreated hearing loss can lead to serious mental and physical problems in older adults, Medicare won’t support the single best treatment: hearing aids.

The Good News.  On December 16, Congress passed a bipartisan bill to cover hearing aids and hearing audiology services. HR 3 allows the Federal government to negotiate prescription drug prices and use these savings to cover the costs of hearing, dental and vision services. This is an issue that the Hearing Loss Association of America and other groups have been advocating for for years. In addition to covering hearing aids, the bill permits reclassifying audiologists as practitioners under Medicare, qualifying them for reimbursement. The audiology professional groups — the AAA, ADA, and ASHA — urged the Senate to adopt the measures. HLAA praised the action as a “significant step forward.”

The Caveats. While celebrating the passage of HR 3 as a historic achievement, HLAA urged caution. The bill must be passed by the Senate, where there is significant opposition to negotiating drug prices. “Senators, as well as the Trump Administration, are exploring other ways to lower the cost of prescription drugs,” HLAA said in a statement. “Whether these alternatives will also include hearing aid coverage under Medicare remains to be seen.”

Don’t Wait to Get Hearing Aids. The sooner you treat hearing loss, the more effective the treatment is likely to be. So don’t wait for Congress to get its act together and actually make this provision law.

The National Institute on Aging notes that untreated hearing loss can lead to depression and isolation, as well as cognitive decline and dementia. Hearing problems are also also associated with greater risk of falls, which can be devastating for a vulnerable adult. Medicare doesn’t cover vision or dental care either, meaning that older adults may be on their own financially when it comes to three components of healthy aging. It’s a short-sighted policy and one that may finally be rectified.

If you can’t afford hearing aids sold through private audiologists, alternatives exist. Consider the big box stores like Costco, which sells brand name hearing aids at lower prices than independents. Other stores like Best Buy, Sam’s Club and Walgreens also sell hearing aids, although they cannot legally be called “hearing aids” without FDA approval. Many insurers sell affiliated  brands of hearing aids at a much lower cost than you would pay privately. United HealthCare, for instance, sells hearing aids through hiHealth Innovations. HearingTracker allows you to compare hearing aid prices in a geographical area, Readers, please share other alternatives to high-priced hearing aids in the comments section.

Consumer electronics products are good starter hearing devices (Don’t go too cheap.)  In addition, sometime in 2020 the FDA will issue its regulations for over-the-counter hearing aids, making access to FDA approved hearing aids cheaper and more accessible.

For now, it’s great that Congress was able to take a little time out from impeachment to get this important bill on the agenda.

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

 

 

 

 

 

Captions Wherever You Go

It’s rare that a new app or product comes on the hearing device market that seems revolutionary. But Google has come out with a voice to text app that is potentially game-changing for those of us with severe hearing loss.

Although I have an excellent hearing aid and a state of the art cochlear implant, I still have trouble understanding speech in a group or in a noisy environment. Existing voice to text apps like AVA and Dragon Dictation help in those situations, but Google Transcribe far out performs them.

Google Transcribe is a free app that is currently available only for Android devices. I’ve been using it for the past month or so and didn’t want to write about it till I understood the pros and cons.

There are cons, as a glance at the photo illustrates. It starts out fine and then deteriorates.Google Transcribe IMG_0495

This transcript was made during a discussion with three other people. Looking at the transcript now, a day after the conversation took place, the text seems pretty garbled. It seemed perfectly clear at the time, probably because I can also hear enough to provide context. My book club was discussing Geraldine Brooks’ novel “March,” which imagines Louisa May Alcott’s “Little Women” from the perspective of the father who goes off to the Civil War. “Marmion” in this text refers to Marmee. I’m not sure what the word “Reversible” was supposed to be, but the rest of it seems clear enough.

Using the device at my book club, the discussion at first appeared in Spanish. Google Transcribe is also a translation app and has dozens of languages to choose from. I must have clicked on Spanish by mistake.

If you have an Android phone, all you need to do is download the Google Transcribe app. If, like me, you are a loyal Apple user, you’re out of luck unless you buy an Android device. Fellow blogger Shari Eberts, who wrote about Google Transcribe a few weeks ago, suggested buying an inexpensive Android device and not registering for phone service.

I bought this device. Since I’m not an Android user it took me a few tries to figure how to turn it on and navigate around it. I should have had the sales person show me how it works. It’s a nice slim phone and it charges quickly. As long as it’s connected to WiFi, it gets Internet access. I recently used this phone for GalaPro (see earlier post), because the type is clearer and larger than that on my iPhone. It even has a nice camera.

Live Transcribe also provides live captioning for any video, including podcasts, Skype calls and others. You can read more about this on Hearingtracker.com in an article by David Copithorne.

Live Transcribe is an artificial-intelligence based technology, which means that it learns how to hear speech. Your own voice will quickly be the most accurate, because it’s the one the app is most often exposed to. Other speakers will also transcribe more or less accurately depending on background noise, how clearly the speaker articulates and so on. It may take longer for Live Transcribe to recognize and accurately translate heavily accented speech.

Copithorne also wrote about Google’s Project Euphonia, which learns to recognize diverse speech patterns, for instance speech impediments. In partnership with the ALS Therapy Development Institute, Google Transcribe’s algorithms will enable it to learn to follow the speech patterns of people with ALS.

I haven’t tried Google Transcribe yet in a restaurant but I have successfully used it in environments that were previously very difficult. One is at our HLAA New York City chapter monthly meeting. The presentations are looped and captions are provided by CART. But I’ve always found it difficult to hear people who want to talk to me before or after the program. I used it this past week and it changed the whole experience. I could actually understand what people were saying. (CART, at least for now, is a superior caption provider, but since you can’t take your CART provider with you most of the time, Google Transcribe is a good substitute.)

Last week Apple stores were holding workshops for people with disabilities to demonstrate ways that Apple products could be of help. I had asked for CART captioning for the workshop, but Apple was unable to provide it. The workshop was held in a typically loud Apple Store. Apple had provided a portable hearing loop, which helped. But the only way I followed the presentation was on my Android phone using Google Translate.

It seems like heresy to use an Android phone in an Apple Store, but the presenters were impressed. Let’s hope Apple follows Google’s lead in this promising new technology.

 

UPDATE, MONDAY May 27:

Android’s Live Transcribe will let you save transcriptions and show ‘sound events’.

Click to read the article.

 

 

 

 

 

 

It’s About Attitude

Ten years ago when my hearing dropped suddenly and severely, I despaired of ever living a hearing life again. Despite a cochlear implant and a sophisticated hearing aid, that despair seemed justified. I could hear, but I could not function in a hearing world

Some terrible times are burned into my memory.

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Photo by Pixabay on Pexels.com

Taking my daughter and some of her friends to a restaurant for her 21st birthday. My daughter sat next to me and helped with handwritten notes and clearly enunciated explanations, but that wasn’t enough. I was never even sure of her friends’ names, although I do know three of them were named Sarah.

Going to a college friend’s funeral in Cambridge in a beautiful Harvard chapel with terrible acoustics. Several old classmates were there but I didn’t recognize them and I couldn’t hear names clearly enough to know who I was talking to.

My children’s college graduations – both lovely occasions, of which I heard nothing, from start to finish. But even the milder hearing loss I had from age 30 on meant that I never really heard any school event, pre-k to graduate school.

The daily morning meeting of editors in my department at The New York Times. 15 to 20 people planning a daily section, of which about a fifth would be content I was responsible for. I delivered my information but I never heard the responses, or questions about it. I cringe at the memory.

Most of the 2008-2010 theater seasons. As theater editor I was expected to see as much as possible. No one said anything about hearing it. I remember going to a play with Ben Brantley, the theater critic. Not only could I not hear a word of the play but I couldn’t hear him in the intermission either. Did I tell him? Vaguely. Maybe. At that point in my career the stigma of hearing loss and aging was terrifying. (Readers of my memoir, Shouting Won’t Help, know that that strategy did not work!)

Now a mere a decade later, technology has delivered the tools I need to function in a hearing world. Over the next few weeks, I’ll discuss some that I personally use. Some allow me to hear at the theater, some at the movies, some over dinner in a noisy restaurant, some in a gym class, some to hear music again. I can go hiking and hear my companion ten feet ahead of me. I can hear everyone at my book club (as long as they speak one at a time). I can communicate with friends who are even deafer than me, friends I used to “talk” to over our computers sitting side by side. I can understand on a windy cold morning when someone asks me my dog’s name. (Oliver.)

Ollie on bed
Oliver

But it’s not just technology that allows me to hear better now. It’s attitude. I ask for CART captions. I ask for a seat in the front. I ask people to repeat themselves slowly and clearly. I ask my Pilates teacher to wear my clip-on mic so I can hear her. I make myself tell everyone that I have hearing loss, and explain to them over and over again how to talk so that I can understand them. I credit my friends at the Hearing Loss Association of America, #HLAA, for showing me the way.

In addition, instead of giving in to my hearing loss, I make myself hear better. I make myself listen. I did auditory rehabilitation – that is, I practiced listening — in both informal and formal programs, and part of what I learned was how to listen.

I accept my hearing loss – I use my devices, flawed as they sometimes seem, I ask for help. Most of all, I demand respect. It’s surprising how successful that is.

Next week I’ll write about how technology has allowed me to  love theater again. The week after, I’ll write about the new live captioning devices that me possible conversation in a noisy place. And the week after that I’ll write about how a new hearing aid can completely change the way you hear, even if the one you already had was top of the line and cost more than you’ve ever spent on any one thing except maybe a car or a house.

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.

Smart Hearing_Cover_highres

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

Answers to Questions About Hearing Health

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Photo by Pixabay on Pexels.com

We all have questions about our hearing, our hearing aids, and our life with hearing loss. How can we enhance our hearing experience? How do we deal with hearing related issues like tinnitus and vertigo? How does hearing loss affect cognitive health?

Sometimes these issues may be addressed at HLAA chapter meetings, or through informal contacts made at HLAA’s annual convention (to be held this year in Rochester, June 20-23). Books like mine also offer information, as does the HLAA website. But now the Mayo Clinic is offering a new service where people with hearing loss, at every stage of their life, can get and share information with others.

The Mayo Clinic, in collaboration with the Hearing Loss Association of America (#HLAA) and the Ida Institute, an independent non-profit organization that promotes hearing health, has established an online forum where you can find support, answers to specific questions, share experiences and even gripe if you feel like it.

The forum is monitored by Mayo Clinic staff as well as volunteer mentors, and this oversight should help keep the discussions civil and the information credible.

To join the group go to https://connect.mayoclinic.org/group/hearing-loss/. Click on the “Join” button at the top, create a user name (you can use a nickname or a first name plus @ — for instance Katherine@), enter your email address and follow the prompts.

Anyone can read the discussions, whether or not you join, but if you want to initiate a topic or comment on an existing discussion, you’ll need to fill in information in the section titled “Introduce Yourself.”

Existing discussions address hyperacusis, how to improve hearing clarity, tips for speaking to someone with hearing loss, acoustic neuroma, trouble with TV captions, Meniere’s disease, dealing with tinnitus and much more.

An online forum is not a substitute for an in-person support group. Whether you are new to hearing loss or a veteran of hearing loss, you might benefit from joining an HLAA or ALDA (Association of Late Deafened Adults) chapter near you. But I also recommend joining this forum. You can learn from the discussions and also contribute to others’ knowledge.

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For more about hearing health, my book “Smart Hearing.” (2018) will tell you everything I know about hearing loss, hearing aids, and hearing health. “Shouting Won’t Help,” (2013) will tell you how I coped with unexpected hearing loss 

You can get them online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.

 

 

 

 

 

The Noise of War

This Memorial Day, as we honor veterans with parades and flags and, yes, barbecues, we should remind ourselves of the toll that war takes on hearing.images

Two and a half million veterans have service-connected hearing disabilities. Tinnitus is the number-one claim for all service related disability, with more than 1.5 million veterans receiving disability benefits for it. Another million receive benefits for service-related hearing loss.

Master Sgt., Donald Doherty, a retired Marine and Vietnam veteran who is now the Chair of the Board of Trustees of the Hearing Loss Association of America, lost his hearing as a result of gunfire and artillery noise during his 1965-66 tour in Vietnam. He has worn hearing aids since June 1970. He recently retired from the Department of Veterans Affairs after 25 years of service.

Doherty is a member of “Heroes with Hearing Loss,” supported by HamiltonCapTel. Heroes with Hearing Loss is group of veterans who hold interactive workshops to help veterans and their families come to terms with hearing loss and find solutions. You can follow them on Twitter at @HWHLVeterans.

Hearing loss is even more an invisible disability in the military than it is elsewhere. Among veterans it is often overshadowed by other injuries. But as Heroes with Hearing Loss notes, hearing loss and other injuries are  “intertwined both physically and emotionally — as a trigger, a constant reminder or an everyday frustration. It is a very unique and personal challenge for many veterans.” The website has a useful list of resources and web addresses. 

For the past several years the group has held a packed workshop at HLAA’s annual convention, which will be held this year June 21-24 in Minneapolis. I wrote about their 2014 presentation in “An Invisible War Wound,” published on November 11th, 2014, Veterans’ Day.

“Marines — and anyone in the armed forces — have been instilled with a sense of pride, the need to act independently, to do it yourself. It’s a sign of weakness if you reach out for help,” Doherty said at that event. Eventually, you realize it’s affecting “not only yourself but everyone around you.” Heroes with Hearing Loss helps veterans accept help.

Captain Mark A. Brogan, Ret., was one of the speakers that year. He was injured in a suicide bomb attack while on active duty in Iraq in 2006, sustaining a severe penetrating head injury, multiple shrapnel wounds, and a nearly severed right arm. He spent months in a coma at Walter Reed Medical Center. It was not until his traumatic injuries had been treated, he said, that he began to be aware of his hearing loss and its permanency.  He also began to realize how hearing loss and TBI were entwined.  The part of the brain that controls speech perception was injured in the blast, he said, and that damage combined with physical injury to the ear to make speech difficult to understand. He knew he needed help, but like many in the military asking for help was difficult.

HLAA was founded in 1979 by Rocky Stone, who also suffered service-related hearing loss. HLAA continues to honor and offer resources for veterans, on both the national and chapter level. Mark Brogan joined the Knoxville, Tenn., chapter: “It’s just good to get with  others who have the same type of disability,” he says.

To see some of the ways HLAA is involved with veterans nationally, go to HLAA’s website, or just click through directly to “Veterans.”

For more information about living with hearing loss, see Katherine Bouton, Amazon.com.

Hearing Loss Won’t Kill You, or Will It?

I published this post on my Psychology Today blog, which is aimed at psychotherapists. But I thought the readers of this blog might also find it interesting.

If you are a therapist and have a patient with hearing loss, please read this to get a sense of what your patient may be experiencing.images

I lost much of my hearing gradually, over 30 years. And then, eight years ago, I lost almost all of the rest of it in a single day. Eventually I got a better hearing aid and a cochlear implant, but I never heard well again.

I was forced to leave a job I loved. Caring for my elderly parents was almost impossible because I couldn’t hear them, I couldn’t hear their health-care providers, and I couldn’t call 911 in an emergency. I flew there often, mostly for crises, because the only way I could begin to function was in person, reading lips, asking for written notes. The stress was overwhelming.

My marriage was disintegrating because of the depression and anger my hearing loss caused. My young-adult children were unable to comprehend how their mother had turned so difficult. I quit my book club. I avoided going out with friends. On election night 2008, the night of Obama’s election, I declined a friend’s invitation to watch together and stayed home alone with a bottle of wine and a box of Kleenex. I drank myself to sleep before the winner was declared.

Most nights I slept no more than two hours at a time, often dissolving into crying jags in the middle of the night. I lost 15 pounds. I thought about ways I might kill myself, assuring myself I wouldn’t actually do it. But I thought it about it too much.

Fortunately I found help. A psychotherapist provided medication and talked me through those dark months. When I developed vertigo, she worked with my ENT to help find the right drug combination to keep it under control.

Hearing loss is not a lifestyle problem, it’s not just a normal part of aging. It is a deeply disruptive loss that changes everything about the way a person lives. Isolation and depression are common responses. It contributes to cognitive decline. Society dismisses it, and this makes it even harder to cope with.

I survived my hearing loss and became an advocate for education and accessibility for the deaf and hard of hearing. I am a board member of the Hearing Loss Association of America. I wrote a memoir of my struggles with hearing loss, Shouting Won’t Help, and included my email address so people could contact me. And they do. Sometimes the emails are heartbreaking. Yesterday morning I got one from someone I had never corresponded with.

The subject line was: “Rage, Anger, Depression, Abusing Alcohol.” I responded, and as more email came in over the day, I realized the writer was in serious trouble. She was essentially alone in a distant state. After consulting with psychotherapist friends I urged her to contact a mental health professional immediately. I wish I had been able to provide a reference for her.

This person had been on medication for depression and anxiety. Her hearing loss was not new, although it was newly worse. Whoever prescribed the medication seems not to have recognized the severity of the impact of her loss, or not to have successfully dealt with it.

There’s nothing more I can do for this person, but I urge therapists to take hearing loss seriously. Acknowledge the significance of the loss. Understand that hearing aids and cochlear implants don’t always work very well. Try to understand what it’s like to lose your means of communication with others. Try to imagine what it’s like to doubt everything you think you hear. Imagine the embarrassment of repeatedly asking for clarification a third or fourth time. Many people just give up. They isolate themselves, they get depressed, they decline cognitively. Sometimes they even think about suicide. Sometimes, they even carry it out.

When I was writing my book, I included the experiences of many people who worked in jobs where hearing well is important. I interviewed psychotherapists, musicians, nurses. I wanted a teacher and finally found a high-school teacher who had been forced to leave his job because he could no longer hear his students. I heard he was depressed and drinking. Before I was able to interview him he was killed in a single-car accident. The cause was never discovered.

For more information about living with hearing loss, my books  “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You” and “Living Better With Hearing Loss” are available at Amazon.com.

The Day I Lost My Hearing

Every year I observe the day I went deaf. My life changed that day. At first it seemed nothing but negative, a catastrophe. Now I see that it gave me an opportunity, a door that opened onto a new world.

I remember the day because it was a holiday — Halloween. My hearing had been in a steady decline for three decades, but it was on Halloween of 2008 that I realized it was irretrievably gone.

I had started a new job two months earlier, and learning the routines had been stressful. Once I mastered the systems, I began to realize just how hard the actual job was, with too many elements and too many deadlines. I could tell it was affecting my health, but I was only two months into it. No turning back.

On that Monday, I had a routine flu shot. I began to feel woozy that evening, and by Tuesday I was dizzy and slightly nauseated. By Wednesday my ears were blocked. I was also hypersensitive to sound. This wasn’t the first time I’d had those symptoms, and they usually indicated a downward fluctuation in my hearing. I made an appointment with my ear, nose and throat doctor for Friday morning. I continued to suspect the flu shot as culprit, but I knew it was just my hearing, doing its mysterious disappearing act.

I live in New York, and my trip to the doctor was two subway rides. It was morning rush hour and Halloween, a frenzied combination. Teenagers in makeup shouted and roughhoused. Two businessmen hung over my seat talking loudly. A panhandler in a wheelchair hollered his pitch for donations right next to me. The noise was overwhelming. I covered my ears with my hands and shrank down into my seat. At this visit, I couldn’t hear my longtime doctor. He wrote questions for me on his computer. A hearing test confirmed the worst.

Oral steroids are a standard treatment for sudden hearing loss, and although mine didn’t fit that description, he prescribed them anyway, a blockbuster dose gradually decreasing over the next two weeks.

 

I was already stressed and overwhelmed with anxiety. Now I panicked. How could I possibly do my job with my hearing as diminished as it was? I took the rest of that day off, working from home. I sobbed and raged and sank into a fierce depression over the weekend. On Monday I went back to the office. I made vague reference to my hearing having been affected by the virus I’d had but stayed far from the truth.

My hearing never got better. I struggled through another year, pretending to myself that I was managing. I’m a good lip reader, and I set strategies in place to maximize my ability to understand. The following September I got a cochlear implant, but after three decades of profound hearing loss in that ear, it didn’t help much. Still, I thought I was getting away with it. Then a tough new boss came in. He didn’t buy it. I wasn’t a team player, he said.

I left that job at the end of the year. At first it seemed like a huge defeat. But as I gathered my strength and began to consider what to do next, I came to think of my hearing loss as an opportunity. I had been clueless about hearing loss. I thought my situation was unique. I was embarrassed to be going deaf at such a young age. I hid my hearing aids and I tried to hide my cochlear implant. I knew nothing about support groups or advocacy for people like me.

And that was my opportunity. I could share what I learned, and continue to learn, about hearing loss. I joined the Hearing Loss Association of America and found other people like me. I became an expert — writing and talking about hearing loss from the patient perspective, and eventually from the consumer perspective. It’s an interesting transition from patient to consumer. As a patient, you are mostly a passive participant, hoping for the best. As a consumer, you have rights. And as an advocate, you channel both of those roles into making your disability your strength.

I never think about that Halloween without a tinge of sadness. But out of that experience came a chance for a second act. One of the things I have found most interesting in my new life is how many other people have also been forced into a second act, by hearing loss or by other misfortune.

Many of my Hearing Loss Association of America colleagues have also become hearing-health activists, many of us working as hard at it as we ever did in our paid professions. For me, and for others, it’s also far more gratifying than my paid work ever was. And the best part — it’s given me a whole new life.

I know it’s true for others. Please share your experience in the comments section below. If yours wasn’t as positive, remember that mine also had — and continues to have — its downs as well as its ups. Nobody ever said it was easy. But that doesn’t mean it doesn’t have its rewards.

This post was first published on AARP Heath on December 5, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine 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 Amazon.com.

Emergency Preparedness Plans for Those With Hearing Loss

Tips that go beyond the usual for the deaf and hard of hearing.

Emergency Prep for Hearing Impaired

Tips for those with hearing loss on how to be prepared in the case of an emergency. — Getty Images/iStockphoto

Emergencies happen. Just recently, the country has seen floods, tornadoes, wildfires and terrorist attacks, not to mention a host of other catastrophes. It was also the 15th anniversary of 9/11, which ushered in a new era of emergency awareness.

It goes without saying that everyone should be prepared with an emergency plan. But for people with hearing loss, being prepared goes beyond the usual.

The Centers for Disease Control and Prevention offers information on its website for emergency preparedness plans, and the American Red Cross suggests what you should have in your emergency kit.

For more specific advice for those with hearing loss, the New York City chapter of the Hearing Loss Association of America recently hosted a presentation on emergency planning for the deaf and hard of hearing. Representatives of New York City Emergency Management offered information about basic emergency planning, as well as these useful tips for adults with hearing loss:

  • Use “legacy technologies.” These include old-fashioned pen and paper for communicating with friends, family and emergency workers if you do not have access to your hearing aid or cochlear implant. Another legacy technology is a landline telephone. Even when cellphones, Internet, power and everything else goes, a landline may still work. Check with your provider.
  • Keep extra batteries in your emergency kit. Be sure to include batteries and chargers to keep your hearing aids, cochlear implants and assistive listening systems safe and working. You’ll want to have several packets of backup hearing-aid batteries and a sealed waterproof container in your emergency kit, for your hearing aid or cochlear implant. The bag or container should be big enough for extra batteries, chargers and assistive listening devices. Don’t forget to include your medications, written copies of your medical information, your prescriptions, and your driver’s license and passport.
  • Consider a portable battery charger. Cochlear implants are more of a challenge during an emergency because their rechargeable batteries generally last at most about eight hours. This is where a portable battery charger — or two, if you want to be extra careful — may be useful. The chargers themselves need to be charged, however, so be sparing in how you use them.
  • Don’t forget your car as a power source. Even when all other power is out, your car (depending on the model, and as long as you have gas) will have some power for charging things like a cochlear implant battery pack, your cellphone and so on. These will be charged through the USB port.
  • Flashlights are a must. They are especially important for the hard of hearing. If it’s dark, you may need a flashlight to help in reading lips. Make sure you have them in your emergency kit and in a handy place in your home.
  • Use Facebook’s Safety Check. If cellular phone service is still working, this feature allows Facebook to notify you in the event of a disaster in your area and ask if you’re safe. You click the “I’m safe” button and the message will go to your Facebook network. Facebook can also give you a list of friends who might be affected by the disaster. Facebook is selective in the disasters it covers with Safety Check, and has been criticized for implementing it in some disasters and not others, but it’s still a good way for the deaf and hard of hearing to check on friends and relatives.
  • Get a weather-alert radio. If you live in an area where tornadoes, hurricanes, floods, landslides or other natural disasters are common, you may want a NOAA (National Oceanic and Atmospheric Administration) weather-alert radio. They come in all price ranges, and a variety can be found by Googling “weather alert radio” or checking online at Amazon. If you are deaf or hard of hearing, you can activate a warning light. Some weather alert radios have an LCD screen for alerts.
  • Sign up for emergency alerts issued by your city or community.
  • Form a support network. This is important for anyone who lives alone. Ask two or three friends, neighbors or coworkers to be in your network so you don’t go through an emergency alone. Your network partners should make a plan to stay in contact during an emergency. They also should know your medical conditions and needs, and where to find emergency and medical supplies.

 

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 Amazon.com.