Tag: hearing loss

Music Appreciation – Caveats and Limitations

As we all know, music holds a special meaning and connection for each and every individual who listens to it. We all have our own personal preferences to how we like our music to sound and whether we want to hear more bass than treble, more vocals than instrumental, and so on. Each and every one of us has our own personalized “equalization setting” of choice.

This is one of the great things about music. Not only can we make it “our own”, but we can use it to convey a magnitude of information. How many times have you heard only a couple seconds of your favorite song and you immediately thought of a time or place – or how you felt – and instantly it takes you out of your current environment and transports you to another world? So what happens when you lose your hearing? How does music sound then?

Clarinetist Performance

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A Life on the Ocean Wave

“Excuse me for asking… I know you said you had hearing loss but does your partner have hearing loss too because he seems to be really struggling to follow the conversation?”

Gulp.  He doesn’t — or rather ‘didn’t’ have hearing loss — not in the sense of having it confirmed by a professional but yes, whilst away on this particular trip we had both noticed how hard he was finding it to follow what was being said, especially when we were sitting in a group.

On a cruise

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“But I Don’t See You As Disabled!” The Flip Side of “But You Look so Normal!”

If someone finds out I’m hard of hearing, one common response is, “But you look so normal!” Since I first confronted that statement as a junior in college, I now know how to feel when someone says it. I have made peace with the implication of the statement because I know the idea comes from ignorance. With a little bit of patience, time, and education, the inference of “But you look so normal!” can easily fade.

What is still a stumbling block for me is when people tell me, “But I don’t see you as disabled!” This statement is one that is far more common than “But you look so normal!”. Variations of it have been applied to other minorities, who have responded by discussing the destructiveness of this idea. Most notably, George Takei wrote a blog post called “I Don’t Even Think of You as Gay.” “Well, You Should.” which explained why it matters for a gay individual to be recognized by their peers. When talking about ignoring characteristics that make one a minority, Takei said: “That person has likely suffered internal conflict, social opprobrium, and personal pain that you have never experienced. So long as there is prejudice and inequality, it will continue to matter.” Absolutely is Takei correct in this idea, but where it becomes complicated (for me, at least) is in the consequences of being seen as “disabled.”

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Thank You to All the Lipreading Tutors Out There

The 8th to 12th September is Lipreading Awareness Week in the UK and so my post is in honour of the Lipreading tutors around the world. Thank you for all you do!

When I got my first analogue aid, I shoved it in a drawer because it amplified everything and the sounds of cutlery or a running tap scared the living daylights out of me. Nobody checked up on me and it was left up to me to ask to be referred to a different hospital where I’d discovered they were (at that time) trialling the use of digital hearing aids.

At the second hospital, I was given an ‘in the ear’ aid and told to ‘build up use gradually from an hour a day to all day’. The hearing aid was set far too loud and the audiologist refused to turn it down to make it bearable (let alone comfortable) and so, it too got shoved in a drawer never to see the light of day again.

I then enrolled on a lipreading class.

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You Are Not Alone

When I was first told I needed a hearing aid, the last thing I wanted was for other people to know about it. I felt like I was the only person in the world with this ‘problem’ and that it was a private matter and not something I wished to discuss with other people. I now wonder if, because I discovered my deafness in a hospital setting, that’s why I felt that way about it: it was a medical diagnosis and therefore private, right?

Alone

I wonder if I’d had my hearing tested and been told I needed a hearing aid at an independent dispenser’s or an opticians with a hearing care centre, if I would have felt differently about the whole experience. (I may still have been advised to go to hospital later to discuss the prognosis but perhaps the initial experience of being told I needed a hearing aid might not have felt so ‘medicalised’.) Perhaps it would have felt more like being told I needed glasses, which was easy enough to come to terms with, as I recall.

Anyway, in the beginning, I couldn’t get used to the ‘in the ear’ hearing aid I’d been given at the hospital: it was so uncomfortable, made my ear and jaw sore and the volume was ‘deafening’ and it gave me terrible pains in my head after just a few hours of use. I consigned it to a drawer and instead embarked upon lip-reading classes. I remember that my goal was to become so proficient at lip-reading that nobody would know I had hearing loss. (I think I’d seen one too many spy movies with people looking through binoculars and reporting what was being said!)

My plan worked well for a time but then my hearing loss got a lot greater and I had to go and have another hearing test.

The student who announced the results of my hearing test did not realise the impact of what she was saying to me when she told me the hearing loss had begun in the other ear. She said it so matter of factly — but to me, I saw it as the ‘beginning of the end’. I needed hearing aids — not just one but TWO, and I was going slowly deaf in both ears. I was heart-broken.

The hospital offered me another in-the-ear aid but after the pain I’d had with the first one, I couldn’t face it. I chose to go private. When the audiologist told me I needed BTEs, again I was upset. “They’re just for really deaf people right? Surely I didn’t need those? I worried they’d be really noticeable but actually, I got the ‘open ear fit’ (the plastic tips have air holes in them) and they were light, discreet, and I honestly couldn’t always feel them. It was a revelation after having the ‘ear full’ experience.

open domes

When I did finally get these discreet hearing aids, I felt much less self-conscious about them and I started to tell a few people that I had hearing difficulties and when I did, I was amazed at how often people’s replies were that they were deaf in one ear or one of their relatives or their best friend. People at work told me about other people at work who had hearing aids and I’d never guessed (and why should I?). But it was far more common than I’d ever realised. I even showed my hearing aids to a couple of people and recommended my audiologist when it turned out they too had hearing loss. (I should have been on commission!)

I started to feel OK about having hearing aids, and the more people I met who also had hearing problems, the better I felt. Knowing other people trundle along through life with the same problems as you helps to put it all into perspective. Once the dust settles, you just ‘get on with it’, don’t you?

I’m Not Going on Vacation

I don’t know if this is peculiar to where I live but here professionals tend to have a habit of talking about people’s experiences of hearing loss as a ‘journey’.

Hearing Loss Luggage

According to the Oxford dictionaries, a journey is ‘an act of travelling from one place to another’. To me, a ‘journey’ involves setting out with the aim of reaching a destination. But that does not fit with my experience of deafness. I didn’t choose a destination or route and I certainly didn’t buy a ticket.

If life’s a ‘journey’, then the destination is the coffin, is it not? In this metaphor, having hearing loss is not the journey itself — rather it’s a heavy and somewhat cumbersome piece of luggage which some of us have to carry around. Sometimes, there may be a luggage trolley (hearing aid or other device) to make things easier and on occasion, someone might carry the luggage for us (watching something with the subtitles), meaning someone else has done the hard work for us, but, for the majority of us with hearing loss, we’ll be ‘carrying it’ with us for life.

And that’s fine. Everyone has something, don’t they? High blood pressure or a bad back. But do their doctors refer to those people’s conditions as ‘blood pressure marathon’ or a ‘bad back ramble’?

In the same way the media likes the phrase ‘battle with cancer’, so health professionals like a ‘hearing loss journey’.

Perhaps the ‘hearing loss journey’ phrase came about because of professionals studying the Kübler-Ross ‘five stages of grief’ which is also referred to as a ‘journey’, but is that enough for the phrase ‘hearing loss journey’ to have caught on?

Or is it something to do with the whole ‘pathway of care’ way of thinking and speaking about patients? Pathways, journeys… us deafies are clearly going somewhere. Perhaps at some point the professionals will let us know where they think we’re heading: that way, we’ll know what to pack!

So, this is a plea to the professionals out there: becoming deafened isn’t a journey with a destination. We haven’t bought a ticket, so please don’t talk about ‘journeys’: we’re adjusting to living with a disability, not going on vacation.

Katherine’s Hearing Story

The beginning of my work as editor for this blog also included a crash course in familiarising myself with the “hearing-impaired” community. As a reasonably recent hearing aid user with mild to moderate loss, I had pretty much dealt with my hearing all by myself until then.

I met Katherine Barnes in a Facebook support group for people suffering from tinnitus and hearing loss. She’s currently finishing her first year of business management in Georgia (USA). Here’s her story:

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Test Your Own or Family Members’ Hearing Yourself: Why Not?!

If a child has a hearing problem, it’s usually the case that a parent or teacher will notice it, and the kid gets a first visit with an audiologist for testing.

With adults who experience hearing loss over a long, slow period of time, it’s too common for a trip to the audiologist to get delayed, often on the order of several years. (The average procrastination period from first noticing a possible hearing issue to getting hearing aids is seven years, as I’ve noted in previous posts here. An estimated 50% of people who could benefit from hearing amplification do nothing about it, ever.)

All involved parties — the hearing-impaired person, that person’s family and friends, audiologists, and hearing-aid manufacturers — benefit from reducing that seven-year wait to get the technology in the ear in such cases. Fortunately, new technology for personal computers, smartphones, and digital tablets appear poised to address this problem.

One of my fellow bloggers here on Open Ears recently pointed me to Mimi, a nice app for Apple iPhones and iPads. (Sorry, it’s only for the Apple crowd for now; but, there are alternative self-hearing-test solutions for everyone else. More on that later.) It’s a brilliant free app, developed by audiology entrepreneurs Philipp Skribanowitz and Pascal Werner, which allows you to quickly test your hearing and get results that aren’t much different than if you got tested by an audiologist. It can then simulate what your corrected hearing would be like, which can be an eye-opener, or perhaps “ear-opener” is the better term. To do a Mimi test, you can use either a good-quality pair of over-the-ear headphones or the earbuds that came with your iPhone or iPad, and find as quiet a place as possible to run the test.

(This TechCrunch article gives a good overview of the app and Mimi’s founders’ hopes for their technology.)

OK, let’s get this out of the way first: you wouldn’t want to depend on the results of an at-home hearing test on your phone to order hearing aids using your do-it-yourself audiogram. One big reason: you won’t be testing in a soundproof room. But, a quick self-test might just make some people realize that they have some hearing loss, and motivate them to get a professional hearing test sooner.

After testing myself, sans hearing aids, using Mimi and a pair of over-the-ear headphones and confirming the obvious — that I have hearing loss bad enough to require a solution — I convinced my wife to test her ears using the Mimi app. Her self-perception is that she does not have hearing loss yet, at age 54. In recent months, I’ve wondered if she’s got a bit of hearing impairment going on, since it’s happened more often that she can’t understand something I’ve said. (It’s also possible that I sometimes speak a bit quieter in private conversations since getting my hearing aids one year ago, the result of perceiving my own voice as being louder when I speak than pre-hearing aids.)

She agreed to let me post the results of her Mimi test here:

sjn-mimi-results

So, not great, but not terrible. Her Mimi-calculated “hearing age” is three years older than her physical age. And as the chart on the left shows, she has a bit of trouble hearing at higher frequencies; and her left ear appears to be functioning not quite as well as her right.

What really raised my wife’s eyebrows in amazement was when she had Mimi simulate hearing as if it was corrected based on the profile above. She noticed a significant difference, and told me that she was quite surprised by that.

While she still doesn’t think she’s ready to get hearing aids, this little experiment did make her aware of the typical hearing loss of an adult in her mid 50s compared to when she was younger. Her plan is to get an appointment at our audiologist’s office for earwax removal, which she suspects will improve her hearing.

Sure, this test with my spouse was anecdotal, but I believe that if more people who suspect that their hearing isn’t what it used to be — or who hear from family and friends that they should consider getting their hearing checked — could be exposed to the existence of the Mimi app and other alternatives, many more people would check their own hearing at home. It’s less threatening or scary than visiting an audiologist, who “might find something seriously wrong with my ears” or be an “unnecessary expense.” Such self-tests most likely will result in more people with age-related hearing loss making that appointment with an audiologist sooner, since the app’s data will show what their minds have been denying.

As mentioned above, Mimi is not the only self-test application out there. Here are a few other options:

  • Self-Test for Hearing Loss Checklist: this is simply a list of symptoms that may indicate hearing impairment. It’s a good place to start prior to taking a self-serve online or mobile-device hearing test.
  • Online Hearing Test at OnlineAudioClinic.com.au: use your computer and headphones for this; it tests ability to decipher spoken words over varying background-noise levels.
  • Online Audiogram Hearing Test: another computer-and-headphones test; this one uses tones to determine your personal audiogram.
  • Test Your Hearing (Android app): less sophisticated than Mimi, but works on smartphones running the Android operating system.
  • Hearing Test (Android app): another smartphone app for Android that creates a self-test audiogram.
  • Hearing Test (iPhone/iPad app): here’s one more for Apple users; this one costs US 99 cents.
  • Search Google for more. There are lots of online hearing tests, and a lesser number of mobile apps. Fortunately, most of them are free.

What Can Hearing Impaired People Do to End Stigmas Against Mental Illness?

  • Have you strained so hard to hear that you collapse from fatigue, too exhausted move anything except your eyelids?
  • Has conversation swirled into a vortex, put you in its eye as you try to understand just one word, and then hit you with its back wall of sound?
  • Have you felt so disconnected from your world and other people that you give up hope of living a happy, productive life?
  • Have you seen people talking to you or about you, and immediately reject you with assertions of “nevermind”?

If you answered “yes” to any of these questions, you can certainly empathize with sufferers of depression. Perhaps, in a greater possibility, you have experienced symptoms that can be found in  depression before discovering your hearing loss. Depression’s  signs, such as difficulty concentrating, fatigue, loss of interest in socializing and favorite activities, can also happen before hearing loss is properly managed. Being able to answer this article’s opening questions reveals your empathy, and why Mental Health Awareness Month (last May in the US) should matter to hearing impaired people.

hope
Photo credit: Elizabeth M

As I mentioned in my previous article, depression-like symptoms can be a manifestation of untreated hearing loss. We bear the stigmas of mental illness if our losses are not understood because hearing loss symptoms can have strong resemblance to those of depression. What may seem like a curse, however, can be transformed into a gift if we understand the power that we wield. Stigmas, while being forced upon us by society, can be ended if we choose to speak out.

In discussing depression-like symptoms of untreated hearing loss, we can communicate that health problems, whether physical or mental, are never a choice. We can dispel the notion that being too exhausted to move is the result of “bad behavior”, or that disconnection from others is unwillingness to communicate. Some of us may suffer from chemical imbalances, as well as the strains that come before a hearing loss diagnosis. Others may know they’re hearing impaired, but fear the diagnoses because of hearing aid costs. Regardless of origin, however, we have the capability of empathizing with mentally ill individuals because of the experiences that come before we understand our hearing loss.

What can come of empathizing with mentally ill individuals? You’d be surprised where a little empathy can lead. Nearly all of my closest friends and boyfriends have suffered with a mental illness or condition of some sort—depression, ADHD, Asperger’s, anxiety. Though our symptoms originate from different places, we help each other if and when our symptoms overlap.

Understanding the feeling of sound swirling into a vortex helps me recognize signs of when friends with anxiety or Asperger’s are overwhelmed by noisy crowds. Friends with ADHD taught me techniques to maintain focus in lectures exceeding an hour, and how to listen—a skill with which I still struggle. Relationships have often begun with bonding over fatigued feelings that people who have not experienced depression or hearing loss cannot easily understand.

Without empathizing with people who are mentally ill, I would have spent many of my high school and college years in a painfully lonely place. With only 17% of hearing impaired individuals  in the US wearing hearing aids, the likelihood that I would find another hearing impaired person my age was low. Reaching out to mentally ill individuals started as a means of overcoming loneliness, but became a way of better understanding of the stigma mental illness carries. The stigma can affect hearing impaired people in the presentation of our symptoms, but it is one that we lose when our health problems are made obvious. Even with medication, mental illness can never entirely subside and the stigma never goes away. I lost it once I got a hearing aid, but the stigma will never leave most of my friends and exes.

Maybe some people can stand back when they watch others be ostracized for pains they understand, but I cannot. After experiencing depression-like symptoms from an undiagnosed hearing loss, I cannot be silent as ill friends are stigmatized. We, as hearing impaired people, have amazing power when we take our experiences and use them to help others and end prejudices of all kinds. Symptoms, regardless of origin, are never choices. Making this statement will help people recognize why stigmatizing mental illness is wrong. Outside of a doctor’s office, symptom origins should never matter in the treatment of other people. If we stand up to this stigma by discussing overlaps in symptoms,we can try to end the stigma on macro and micro levels.

For the latter, we can get involved through government resources, such as mentalhealth.gov. The former can be achieved through something as simple as opening your heart to another person’s experience. Even small actions are a big step in ending the stigma, as well as learning more through contact with others. Regardless of which method you choose, I hope you get involved in promoting mental health awareness, especially if you could say “yes” to the questions that opened this article.

Tell Them, I Say

The other day I was chatting with my podologist (who is also a friend) and the topic of hearing aids and hearing loss came up.

She was surprised to learn i had hearing aids (we’re not close, so it’s understandable she didn’t know), and quickly started telling me about how many of her clients are elderly people who are hard of hearing. She said she often had to repeat things and had made it a habit of speaking loudly.
guidance
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