Back to Basics

I sometimes forget how surprised and dismayed people are by the loss of their hearing, how much of a hidden disability it remains. I was reminded of this when I attended a virtual meeting this week of the New York City Chapter of The Hearing Loss Association of America. The speaker was Michael A. Harvey, a clinical psychologist whose books include Listen with the Heart: Relationships and Hearing Loss and The Odyssey of Hearing Loss: Tales of Triumph. Dr. Harvey’s talk clearly resonated with a lot of people, and during the question and answer session I saw how many in the audience were struggling as I had back in 2009, when my hearing loss derailed me.

My first blog post was published on February 11, 2013, on the Psychology Today website. I called the blog What I Hear, and it was intended both for people who had hearing loss and for those who didn’t. I didn’t realize how great the need for information was until I published my book “Shouting Won’t Help: Why I – and 50 Million Other Americans – Can’t Hear You.”

This was one of my very first readings, and possibly the first time I ever saw CART captioning.

The response from the hearing community was gratifying. There was a lot of curiosity about the hearing-loss experience. I did many interviews and the book got good mainstream-media reviews.  The response from the hearing-loss community was also gratifying but in a profoundly different way. People reacted to my book emotionally. My experience was theirs. We shared the confusion, anger, distress and depression of learning to live with hearing loss.

When I was writing Shouting Won’t Help, I interviewed dozens of people across the country with hearing loss, I talked to doctors and researchers about the causes and treatments for hearing loss, and to psychologists and psychiatrists about the emotional effects of hearing loss. Their stories — and their wisdom — complemented my own story.

The two most important things I learned were 1) Most people with hearing loss feel isolated and alone. And 2) Most people who know people with hearing loss have no idea what they are going through.

In recent years, I’ve lost sight of that basic response to hearing loss and I realize I need to go back to some of those essential issues, to help others with hearing loss understand that their experiences are normal and shared by many. And to offer suggestions for living with hearing loss — practical suggestions from how to explain your hearing loss to someone, to the many apps and devices that help minimize the affect of hearing loss, to asking for and getting accommodations in public places.

Hearing loss affects 50 million Americans of all ages. It’s not just for the old. Sixty percent of men with hearing loss first lost their hearing between the ages of 19 and 44, according to the National Institute for Deafness and Other Communication Disorders, the NIDCD. For women the peak age of onset is between 40 and 59.  Even teenagers are affected at an alarming rate. One in five teenagers has some degree of hearing loss.

I began to lose my hearing at age 30, from unknown causes. Today I have a cochlear implant in one ear and a hearing aid in the other. I went through difficult times, and in fact my day still involves overcoming one hearing obstacle after another. But I’m no longer devastated by my loss, and most of the time I’m no longer angry. I live with hearing loss every minute of every day. But I’m no longer “hearing impaired.” It no longer defines me. Now I’m a person with hearing loss. A person first, who happens to have hearing loss.

I welcome comments and suggestions for topics readers would like to see addressed.

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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.

18 thoughts on “Back to Basics

  1. I would like to know your reaction to the movie Sound of Metal if you have seen it. It gave an insight as to how one feels when they lose their hearing but not sure it did justice as to how beneficial CI s can be.

    Sent from my iPad

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  2. Hi Catherine:

    Thanks for this reminder/post.

    I am a clinical psychologist who first learned there were hearing problems at age 13 when I was in a rock band (lead guitarist who loved to blow the place apart with feedback) and the ENT got school records that showed that the school, which had annual hearing tests, noted a loss starting at 8 years old, cause unknown and no one else in my family has any hearing loss. As I stopped playing rock (eventually) the tinnitus permanently stopped, and I managed until my 40’s without hearing aids, and at that age, despite having high frequency loss severe enough to be in the Profound loss range and I could qualify for cochlear implants. At that time, when first accepting I needed hearing aids, I was very embarassed and felt very “old,” because I needed hearing aids (and I, with peers, made fun of a teacher who needed hearing aids when I was in 9th grade). Since I was newly separated, I was so self-conscious, I insisted on nothing but completely in the canal hearing aids (CIC) so they didn’t show to anyone I was dating. It was very tough to accept that I needed hearing aids.

    Over the decades, that’s all changed so now, at age 68, I am a senior citizen and am only able to work and function due to the increased clarity allowed by the advancement of hearing aid technology and accessories. I find that most of the time, the hearing aids, when well adjusted, are good enough (although I can’t hear anyone if they’re not facing me). The relatively new, very good quality microphones that only a few companies make (phonak are the one’s I’ve had good luck with), help a ton when I’m at a distance from others. And for me, sometimes when I work, I have to do forensic examinations and with social distancing and masks, the other person is roughly 10 feet away and with masks and the distance apart, I can’t read lips anymore (clear masks are ok, but at 8-10 feet, my vision isn’t as good as when I’m closer to the speaker, so the microphones allow me to hear at a further distance, with one benefit being that I still have a career and these modern hearing aids function well.

    One thing that readers may find helpful is that some of the newest over the ear, noise canceling headsets give much clearer sound when listening to lectures, watching TV, taking calls, etc. than streaming directly to new, top of the line hearing aids. I don’t understand why that’s true, but over the ear high quality headsets do allow for picking up many more words and sentences that they’re wonderful. But, being over the ears can create horrible feedback from my hearing aids, and if an audiologist does feedback reduction with the over the ear headsets on, it decreases the ability to distinguish words when one doesn’t wear the headsets (and face to face conversations don’t work with headsets). So, in hoping that it helps others, I want to pass on that my audiologist was able to create a separate program for the headsets, leaving them as is without this program but with that program designed for over the ear headsets, I now get the benefit of both—no headsets when that’s needed (which is most of the time) and headsets when I need good word/articulation discrimination either through the TV, webinars, and zoom and phone calls, so there are new things not frequently discussed that modern tech can help with.

    Finally, I want to pass on that there are a few companies who are creating very good captioning programs, which allow us to see in text what’s being said in lectures, podcasts, etc. This allows those of us with significant hearing loss the ability to function and enjoy life and work for decades after it wouldn’t have been possible in the past. If others have other work around, I’d love to hear of them and I bet others would too.

    Thanks for your writing as it helps many people.

    Mark Siegert, PhD

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    • Mark, thank you for this informative email. I’m up on captioning apps — on TV and streaming video of course, but also live captioning through Otter, Google Transcribe, Ava and others. And I’m a devoted Innocaption user — my Innocaption linked cell phone is now the only phone I use. But I don’t know about the headsets. Can you either comment further here or contact me directily (katherinebouton@gmail.com). Since I have a cochlear implant, I’ve always assumed a headset was useless in that ear. My other ear, with a hearing aid, also doesn’t easily accommodate a headset. I probably need to go to my audiologist (another thing I have put off because of Covid) but even a hat causes feedback. My ha does comes with a great remote mike, however. So if you can give me a little more info about the headphones I’d be grateful.

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  3. I’m posting this for a reader who was unable to post herself:

    I enjoyed reading the piece of your article on “Back to Basics”.

    Grew up all my life with a hearing loss (wear 2 hearing aids and rely on lip reading ) and deaf (without hearing aids & lip reading reliance but not 100% understood). Was bitter and angry due to my early childhood days of bully that I do not want to go there. Have learned to reconcile with this loss as not being my total identity!!! It is still a challenge when it comes to family gatherings which is exhausting due to extreme focus Missing a lot of things (FOMO)!
    The only disappointment I have and among the hearing loss group is that insurance will not cover hearing aids which they are getting more expensive these days, except for the children up to 18 y/o which I wish that was passed back in my days… .
    Do not know if Medicare covers them as I will be approaching it in a few years and will find out more because I truly hope it does cover. Could not live without them in order to function in this hearing world!!!
    Have not see the movie “Sound of Metal”. Hope it is not too much profanity coming from Hollywood these days… will read the review and the sypnosis . Thanks for sharing it.

    Liked by 1 person

    • Thanks for writing. You raise a couple of interesting issues.
      First, family gatherings.
      No matter how much your family loves you, I’ve found, they will inevitably forget that you can only hear one person at a time. When my adult kids visit, it’s always lively and fun but sometimes — often — it’s also difficult to keep up. I interrupt and say, “What are we talking about?” I use my Otter captions on my iPhone. At meals, I prop the phone in front of me and manage to follow pretty well. When I get lost, I say, again,”What are we talking about/” It’s my favorite sentence.
      Otter is a speech to text app for iPhone. Others are Google Live Transcribe for Android phones, Ava, which identifies speakers in a small group. If readers use and like other dictation apps, please comment. The apps are free, although there may be a charge for extended use. Otter allows 600 free minutes per month. After that it’s $10 a month. 600 minutes is a lot, so for casual social use it should be enough.
      As for insurance, Medicare does not cover hearing aids, but some Medicare advantage plans do. If you are just aging into Medicare take a look at the supplementary insurance and see whether hearing health is covered. Some carriers, like UnitedHealthCare, offer their own brand of hearing aids. And don’t forget Costco, which in general provides excellent hearing aids at lower cost than private audiologists. I’ll write about this in a future post.

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    • Regence’s Medicare Advantage helps to cover hearing aids. It isn’t great but it is better than no coverage as hearing aids are expensive. I have to replace my hearing aids (for both ears) about every five years. The hearing aids slowly are becoming more effective for watching TV. Plus, the price slowly drops. I wish Medicare covered more of the hearing aid cost.

      I learned that I had lost about 60% of my hearing in both ears when I was in my early 40’s and I’m betting I had lost more hearing in my teens to 20’s. I was lip reading for a long time before I learned that I had lost so much of my hearing. It is so frustrating not being able to hear, especially now with people wearing face masks because of the pandemic.

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      • Masks are indeed a problem, but for me at least the problem is partly offset by online meetings, which can be captioned. I hope when we go back to real life that online meetings remain an option.

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  4. I too have learned to live with my hearing loss. On most days, my hearing aids and other accommodations help me get through the day.
    But the pandemic has thrown me for a loop. Hearing is much harder since I can’t read anyone’s lips through a mask. Most interactions outside my home are incredibly frustrating.

    Just the other day, I imagined my life as a fully hearing person—something I haven’t done in a very long time (possibly since my diagnosis nearly 20 years ago.)
    It’s harder now than ever.
    Thank you for all your insights.

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    • Thanks for your comment. I’ve found the pandemic period to be incredibly frustrating, for the reasons you mention (masks) but also liberating — I now have captions available for every single interacton I have outside my home. Meetings of all sorts, social occasions (my book club), telephone and FT. When the captions are provided by the caller, I use my own — I use Otter ai with my iPhone, but Google Live Transcribe does the same thing with Android phones. I just prop it up on my laptop and it transcribes every word.

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  5. Hello Ms. Bouton,
    I will be in a similar situation that you are currently in with a hearing aid and a CI in about a week and a half.
    I have work HAs since the age of six after being diagnosed at five, now am 61.
    I am curious on how to get in front of more people to try and help them understand hearing loss and it’s effect for both HOH and “normal” hearing folks?
    I have written a few pieces about that for our local HLAA Chapter newsletter, but not much past that.
    Thank for any insight, advice and suggestions you may have for me.

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    • HI Kevin, Thanks for writing. I’ve written three books on hearing loss and have blogged for a number of national sites, and been interviwed by many more — and I still feel as if I’m hitting a wall. There is just so much information about there that it’s really hard to get your voice heard. My advice is to start with your family and then your community, and once they get it try for a broader audience. I do think we are making a dent — we just have to keep telling people. Are you a member of HLAA? They have been successful in getting attnetion. \.

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      • Hi,
        Yes, I am a member of the Richmond Virginia chapter of HLAA, as President for the last three years. But I seem to be stuck at a point that I feel like I am spinning my wheels during these crazy times!
        I write articles for our newsletter, and the HEARING LIFE magazine, but I haven’t seen anything in print yet.
        I advocate as much as I can for the HOH, Deaf, and physically challenged.
        I feel like you are, banging against a wall with no doors or windows to get through!
        Thank you for responding to my message!
        Kevin Mowen

        Liked by 1 person

  6. Hi Katherine,
    Your book “Shouting Won’t Help” resonated with me when I borrowed a copy from my local library a few years ago. I could relate to your descriptions of painful difficulties in a fast-paced, professional work environment and thus felt I wasn’t alone with those experiences. Thanks for writing an excellent book; I will have to purchase my own copy and re-read it.
    Possible suggestions for future articles: auditory training (I haven’t seen anyone write about this lately); small or large-scale advocacy challenges or successes; and well, just more of your unique personal perspectives on living with hearing loss.
    Looking forward to more of your writing, Katherine!

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    • Thanks for the good ideas! My book “Smart Hearing” is primarily a practical guide. You might be interested in that instead. It’s also cheaper! It’s also, I keep hearing, not available in libraries. Ugh.

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  7. Thank you for giving attention to ways to assist people with hearing loss. I would like to know more specifically which app to get. There seems to be more than one type of Otter. I do have a iPhone.
    Thank you
    Birte

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    • I can write more about this in a post, but I use Otter ai. It’s free for the first 600 minutes. I found I was using up those minutes so I switched to a paid plan, which is $10 a month.
      I’ll do some research on Otter and Google Live Transcribe and see what new options are available.

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