• Here at The Better Hearing Consumer we discuss our holy grail - the pursuit of living successfully with hearing loss. That means aiming for good communication in every area of our lives. This is a place to read about how others deal with technology, the lack of accommodation, hearing health professionals, and the emotions of hearing loss. Or simply how to get people to face us when they talk. My fellow bloggers at HHTM are top hearing health professionals and I suspect that at least one of them also has hearing loss! Hopefully, you'll find this blog a good place to visit, to read and share about communication challenges, practical solutions and points of view. I will have guest bloggers from time to time, and we welcome your comments.

Victory

The Victory of An Impatient Patient with Hearing Loss

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The fruits of advocacy are both bitter and sweet.  You win some, you lose some.

Sometimes you advocate your little heart out (I need captioning!  The music’s too loud!), but nothing changes.  The winds of change hardly stir the leaves.   It can drive an  impatient advocate crazy.

Then one day, a door shuts in your face because there’s no communication access and you have no choice but to speak your mind – and voilà!  The problem is fixed so promptly that you think that’s it? That’s all I have to do – just say ‘fix this’ and it’s done?   Instant gratification -  what the impatient person with hearing loss loves!

But there’s usually a lot more to it – our fight for meaningful accessibility improvements are carried out in sustained campaigns, such as the fabulous crusades being conducted by CCAC (Captioning Access), Let’s Loop America and Stop Hearing Loss Bullying.   But sometimes our personal advocacy, perhaps just a simple request, is so timely or urgent that it sparks an instant flame.

Last week, Peter Stelmacovich, a renowned deafened audiologist, was denied seating in a Toronto restaurant because of his hearing dog.  This is not an unusual occurrence, according to other hearing dog owners, but this time they picked the wrong guy to mess with.  Peter not only knew the law and his rights, he promptly contacted one of the city’s major newspapers, which gleefully gave the issue major coverage.  The restaurant has now apologized, is re-training its staff, and is posting window signs, ‘Service Dogs Welcome’.  Ah, the sweet smell of success.

Today I had a similar sweet moment, although on a smaller scale and over a longer time frame, when I saw what may have been the results of my personal advocacy.  In my blog of November of 2011, I wrote about communication challenges with an MRI technologist who was unfamiliar with accessibility protocols for patients with hearing loss.  Today I was back at the same hospital for another MRI, this time for a checkup on a congenital aneurysm.  I steeled myself for the usual communication barriers, and was rewarded with a receptionist whose voice was a mere half-notch above a whisper.  When I told her I had hearing loss, she simply stopped talking to me.

The technologist called me in – I figured it was me she was calling because nobody else in the waiting room  got up – and darned if it wasn’t the same technologist of two years ago!  She didn’t remember me, so I guess our communication struggles were not as stressful for her as they were for me; my MRI was probably  just one of thousands she conducts each year.

To my surprise, both she and the system had evolved.  When I self-identified as having hearing loss, she engaged me in what can only be described as an accessible communication process.  We sat in a private room to complete a questionnaire.  She looked me in the eye when speaking.  I struggled with her rolling Eastern European accent, so she stopped asking me the questions and let me complete the form myself.

She explained where I had to go next, what to do, what to wear – and then delivered the kicker:  “When you have the MRI, you will hold a cord that we will yank to indicate when you breathe in and then again when you are to breathe out.”  Oh hallelujah!

A few minutes later I was sitting in the same small waiting room, without hearing aids, once again feeling deaf and half-naked.  But this time I wasn’t grumpy because my new favorite technologist had switched from speech to using clear hand movements for instructions.

In the MRI room, she showed me the ‘yanking cord’ which was now thinner, more pliable and attached to the sliding gurney.  We changed the system slightly – one yank for breathing in and two yanks for letting it out.  In the previous MRI, I had become drowsy as I lay entombed in silence.  The ‘yank’ had pulled me from the edge of sleep and I wasn’t sure if I was supposed to be breathing in or out.

The technologist and I exchanged gifts; she gave me earplugs to wear during the noisy procedure and save whatever hair cells I have left,  and I gave her a happy thumbs up before climbing on the gurney.  They trussed me up like a turkey and then popped me in the MRI ‘oven’ which, by the way, is guaranteed to annihilate anyone with claustrophobia; luckily I only have a hint of it.  The procedure went without a hitch (a few yanks, but no hitch) and when they pulled me out, there were more smiling thumbs-up all around.

I don’t know if my advocacy was responsible for any of these changes.  Perhaps someone in the Toronto MRI business read my HHTM blog, who knows? All I know is that this time, with this technologist and in this hospital, my MRI was an accessible, stress-free procedure…that hint of claustrophobia aside.

 

Victory

Some Shocking Truths About Hearing Loss

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Hearing loss is one of those gifts that keeps on giving. Once you have it, your hearing loss presents itself to you, everygael with mask day, in different ways. You never know what you’ll be treated to – an uncaptioned TV show, a sales clerk whose lips point to her computer, a conversation with friends that spins out of control into incomprehension.

Regardless of when hearing loss occurs, experiencing one of its truths for the first time can be shocking in its unexpectedness, its permanence, and its raw repercussions. We are bewildered at how such a thing could happen to us.

Becoming comfortable in the skin of hearing loss can take time, and through the years I’ve had some shocking moments.  I’ve long since accepted them, but at some point all of these ‘truths’ have hit me in the face, hard.  And some of them keep coming at you, as if you were a punching bag, over and over again.  These may not seem startling to you,  but if you are hard of hearing or deaf, you may have had your own moments: “WHY did no one tell me about this? Can living with hearing loss get any worse? Could I pick a different disability, please God?”

(A note to ‘hearing people’: many of us with communication challenges have a tendency to be somewhat dramatic.  That’s life, and we need to vent once in a while.)

These were some – just some – of my shocking revelations:

Your hearing loss will never go away.  You will always have it. Always, forever and ever, amen.  And if you don’t like it, that’s too bad, because it’s yours to keep and you can’t re-gift it. I was small when I first learned this, but it didn’t really hit me until I was a teenager, trying to communicate with mumbling, hormonal boys.  Then I realized, “This hard of hearing thing is not going to be easy.”

 

Hearing aids do not last forever.   Just when you become used to them, attached to them, or even adoring of them, they die. At 20, I was thrilled, over the moon, to get my first hearing aid. It cost $475 and was my first adult purchase. Some people buy cars or furniture – I invested in a hearing aid, the first of many. It lived for perhaps six or seven years, which I now know is an incredibly long time, but I was expecting much longer, 10 or 20 years maybe? I felt betrayed when I had to replace it – because the new one cost a lot more than $500.  It’s like your teeth; did your parents tell you that around age 50 or so, your childhood cavity fillings would start falling out and you’d have to replace them on your own dime?  Once should be enough.

 

Hearing aids and dental work are both outrageously expensive.   Just saying.

Learning to live well with hearing loss can take a long time.  The aural rehabilitation process seems to be on a continual loop, like a movie played over and over. You wonder if the communication success touted by your hearing care professional is just an illusion, because just when you think you’ve nailed it, a bad hearing day knocks you flat on your butt. It’s like golf – hit a brilliant shot in one game, lose 10 balls in the next.  But there’s good news:  in my experience, the bad hearing days become fewer – and easier to recover from – when we learn how to kick down those communication barriers.

 

Every time you get a new hearing aid, it’s like the first time.   And I don’t mean the sweet and wonderful stuff, like falling in love; I mean the extremely loud and annoying stuff. You can hear yourself breathing – you can hear people on the other side of the world breathing, for heaven’s sakes!  I had a shock with my most recent set of hearing aids – I heard my own tummy rumbling! OMG, you mean other people have been hearing me do that, all these years?  Having never heard anyone else’s tummy growling, I didn’t realize it was so loud!

And then, after a few weeks of breaking in the hearing aids (when sometimes you want to break it in pieces) you realize the sounds are no longer as loud or grating.  That’s when you panic, convinced that you’ve become deafer, thanks to those damn-loud hearing aids!  This happens, they say, because our brain has become used to the signals it receives but….you know….part of me is not 100% convinced.

 

Your loved ones forget or ignore the new rules of communication.   And often. When your spouse-child-mom-dad-sister-best friend-boss-from-hell takes the introductory (and emotionally-delivered) course on “How to Communicate with a Person Who Has Hearing Loss”, he or she may still not remember to communicate in an inclusive way.  And here’s the real shocker – neither will you.  Let’s admit it – who among us hasn’t called their partner from another room – who then has the outrageous gall to answer you from the other side of the wall!

 

Hearing loss can turn you into a self-pitying whiner who looks under rocks for evidence of discrimination and bad behavior.  I’ve been there and done that, at some point.  The trick is being able to turn self-pity into acceptance, whining into advocacy and realizing that, while discrimination most definitely exists, what’s usually under those rocks is simply the barrier of ignorance about hearing loss, which is when we put our self-advocacy into play.

 

Absorbing the shocks of hearing loss takes time and supports – from our hearing care professional, family, other people with hearing loss and consumer organizations. We just have to reach out for them.  Life with hearing loss will be better when we do.