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Wishing Backwards: 10 Things I Wish I Had Learned Sooner

In advocating, Audiologists, captions, Coping Skills, deaf, Hearing aids, Hearing Loss, Life, Lip Reading, Partially Deaf, SayWhatClub, Speech Reading, Support on April 1, 2017 at 3:57 pm

By Michele Linder

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SayWhatClub is such a wonderful place, and many of the articles I write for the SayWhatClub Blog come from posts to my home list, Connect. We get into some good discussions and share valuable info with each other.

A fellow Connector asked, “What kinds of things should you have learned sooner?

For me, this question takes me back to childhood—growing up poor in a family headed by a struggling (in more ways than one) single mother, abandoned by a father I never met, and striving to please and emulate a deaf grandmother who was the most capable and loving person I’ve ever known—and having some traumatic experiences (not related to hearing loss) to work through.

I most likely began losing my hearing long before I flunked the hearing test during the public school screening in grade school. The result was a visit to the county clinic. All I remember of the appointment is that the doctor told my mother I was very proficient at lipreading—it was likely I had had a hearing loss for quite a while—there wasn’t much to be done for “nerve damage” (this was the 1960s), and that as an adult I’d likely be deaf and would need to learn sign language.

That day was the last time my hearing loss was talked about in any meaningful way, and it was the one and only time, during childhood, I saw a doctor for it. I continued to flunk the hearing screenings at school, but I got smart… if I knew about test day ahead of time, I’d conveniently fake a stomach ache and stay home. What kid wants to take a test they can never pass?

On my own, I learned how to live in a world I couldn’t fully hear. I relied on lipreading and other visual skills–anticipatory and observation.

10 THINGS I WISH I HAD LEARNED SOONER

1. I wish I had had a good advocate to model after. I didn’t even know I could advocate for myself, nor was I aware I should.

I purposely didn’t include mentor here, as I had a fabulous mentor in Grandma. She was also a lipreader and did not know or use sign language to communicate. She finger spelled on occasion, though, and she taught my sister and me. The fact that she was so capable is part of what allowed me to consider that hearing loss wasn’t going to be a deal-breaker in life.

I went through my entire public school education without many people knowing that I had a severe hearing loss. I was a good faker and I had a super power (I wasn’t even aware of) where my brain would swoop in and take over for my ailing auditory nerve, so only a few close friends knew. I wasn’t actively trying to hide the fact that I had trouble hearing, as much as I simply didn’t give it much attention. There were much harder issues in life to deal with, so the top spots on my list of things to overcome were already taken.

2. I wish I had realized sooner that faking and bluffing my way through life wasn’t a positive to anyone, especially me. Enough said.

3. I wish it had occurred to me sooner to apply the same skill I used to overcome other challenges to my hearing loss. I worked through many things to become a well-adjusted adult, but it never occurred to me until much later in life that I could apply the same to my hearing loss challenges. I used some really good therapeutic approaches (unbeknownst to me at the time) to change what I didn’t like. Among them, “exposure therapy”.

When it did finally occur to me, it was life-changing. In a situation where I hadn’t handled myself well, I’d think about what I might have done differently for a better outcome. Once I came up with some things to try, I’d take myself out on field trips to experiment.

Note: I only went on field trips on days when I was feeling adventurous and in a good frame of mind.

Example: The confusion over what to call yourself–deaf, hearing impaired, hard of hearing, half-deaf, partially deaf? In my experience, “Hearing Impaired” always made people confused… they didn’t really know what it meant. “Hard of Hearing” caused people to yell at me… they thought shouting was necessary. “Deaf with a lowercase ‘d’” never felt like my word to use, but I tried it and got results. Labels aren’t always necessary, but “deaf “is the most effective, so I’ve become comfortable using it.

However, what I discovered to be most effective is to simply tell people what I need from them.

Example: When checking out at the grocery store, I say “Hi, how are you doing? I need you to know that I read lips, so when I’m looking down to unload my cart, or digging in my bag for my credit card, I’m not going to hear you.

Telling it like it is goes a long way to normalize interaction and communication. People see you as capable and the fact you can’t hear becomes a non-issue. Gone are the awkward situations at the grocery check-out.

4. I wish I had learned sooner that it’s okay to question the expertise of audiologists and doctors. This one is not meant to bash all audiologists and doctors, it’s more of a commentary on my own naiveté, as I put too much trust in clinicians I considered experts. I assumed they had my best interest in mind, without fail, and if there was something else out there to help me, when hearing aid trials proved less than beneficial, they would be aware of it and inform me about it.

Many of the audiologists I saw during the thirty years I tried hearing aids were nice enough, but none of them were what I would call exceptional, yet it didn’t occur to me that I could change audiologists if I wasn’t satisfied… I thought I had to see whomever I was referred to… it seemed traitorous to go elsewhere.

If you’re not getting satisfactory results, then it’s perfectly acceptable to look for someone who is a better fit for you. Joining SWC is what opened my eyes. I learned that some audiologists had incentives to push certain brands and models with most bells and whistles, whether you needed them or not, as they made more money on what was more expensive. To counter, I heard from others who sang the praises of their exceptional audiologists. It made we wonder what difference it might have made had I found someone exceptional?

5. I wish I had become aware sooner that it’s not my fault that I can’t hear with hearing aids. My lack of success isn’t a failing on my part, but sometimes it seemed as if my audiologist was implying that I was the problem. I tried hearing aids from age 21 to age 50 (the year I qualified for cochlear implants) and they simply didn’t give me the benefit I needed. I learned very late that this was probably due to hyperacusis—an intolerance of every day sounds. However, I didn’t learn about hyperacusis from an audiologist, I learned about it from SWC, and then later I was diagnosed at Mayo Clinic with severe hyperacusis.

6. I wish I had found a support group sooner. I was 48 years-old when I found SWC by stumbling onto a SayWhatClub newsletter article someone had reposted on their blog.

At the end of each and every hearing aid trial, I would ask my audiologist (sometimes through tears) what else could I do since hearing aids weren’t working for me. The most I ever got was a Harris Communication catalog shoved at me with no recommendations. The audiologists and ENTs I saw were not equipped or even knowledgeable about what to do when hearing aids don’t work. There is a huge gap between the medical community and those in the know about hearing loss.

SayWhatClub, and other groups focused on hearing loss, is part of what fills that gap, because there’s nothing like getting support from others who don’t have to imagine what your life is like, they know, because they live it too. You can find some really valuable information from groups like ours.

7. I wish I had been more confident in my hearing loss sooner. As a young adult, I let embarrassment and awkward situations deplete me. Had I not been a young mother (I had my first child at age 23), or an adventurous soul, I might have suffered more isolation and depression than I did. When you have a family, four young kids (I had my last child at age 29) depending on you, and you’re moving around a lot with a husband in the military, you don’t let a little thing like hearing loss get in the way. You find ways to live with it. I continued to ignore my hearing loss and didn’t put it “out there” like I should have. Looking back, I think I was happy to have such a wonderful diversion.

8. I wish that I would have recognized sooner all of the things I’m really good at because of my hearing loss. I credit SWC for shining a light on how really good at coping I was, even as a kid left on their own, and I possess a lot of good skill because of hearing differently. Sometimes you have to see things in others before you can recognize them in yourself.

9. I wish that I had learned sooner that apologizing for not being able to hear isn’t necessary. Many people with hearing loss are diffident and apologetic, and I was one of them. I felt as if I was inconveniencing others when I failed to understand and would panic if a repeat was no help. This was a really hard thing for me to overcome, and it’s the same for a lot of people with an invisible disability.

10. I wish I had learned sooner that telling people upfront that I can’t hear is the key to everything. When you do, you’re taking charge and heading off the great unknown. I used to wait for trouble and then disclose, but that’s backwards. Disclose, in the way that is most effective and comfortable for you—it won’t be the same for everyone. Once people know you can’t hear and what you need from them, it sets a tone for successful communication. It’s the magic formula for having good days vs. bad days. It’s what allows you to be who you are in spite of being different.

I’m pretty confident and capable these days, and I credit SWC and volunteering for much of that. That’s not to say I’m always confident and never have a bad day—I still have days where it’s just better if I stay home, and likely always will—however, I don’t think I would be as far along as I am if I hadn’t volunteered with SWC and as a captioning advocate. I started out volunteering because I wanted to pay forward what others in SWC did for me when I was down, but I soon realized I was helping myself far more.

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The Perseverance of Sound: Part III

In Deaf-Blind, Deafness, Hearing aids, Hearing Loss, music, Musicians with Hearing Loss on March 19, 2017 at 6:44 pm

SayWhatClub (SWC) is pleased to welcome guest writer and SWCer Justin Krampert. In this final installment, Justin continues his story of hearing loss, how it has affected his music, and what it has taught—and continues to teach—him.  Part II of this series appeared on March 6, 2017.  

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By Justin Krampert

On my musical-and-hearing loss journey, though, I continued to keep it a secret.  The more I played guitar, I found my musical ear developing too.  I started figuring out the pitches of appliances and other noises (that I could hear, anyway!), which amused my friends to no end.  I wondered if trying to hone my ears to listen for pitches possibly improved my hearing, but I doubt it.  Music dork that I am, however, I went so far as to figure out the approximate pitches of my tinnitus at the time…high C and G, and C# and G#, haha!  I started listening to bands that used 7-string guitars, which sounded lower and heavier (and thus easier for me to hear with my severe high-frequency hearing loss).  John Petrucci from Dream Theater (the ‘Awake’ album) and Steve Vai, were two of my favourite guitarists that set the bar insanely high for me.  They were true virtuosos in every sense, and their musicianship inspired and intimidated me endlessly.  I saved up for my first 7-string guitar.  “Sable,” as I would name her, took me a week or so to acclimate myself around the extra string, and became my main workhorse guitar for the next 12 years (and she’s still here!). 

During one of my last semesters at MSU, I took a Beginning Jazz Improvisation class (I was the only guitarist there, and my 7-string caught the attention of the professor!  He was kind enough to allow me to stay in the class despite not being a fully matriculated music major, and told me, “As long as you can keep up, you’re good.”  I made sure that I did, and received what I consider to be an extremely high compliment from a man who was a MONSTER player on trumpet AND piano.  After our individual playing finals, he told me, “You seem to have a good ear, you know when things sound in tune, and you don’t play a lot of notes just for the sake of adding them, you pause and listen, which is so important.”  I was humbled to say the least.  I suppose having a hearing loss DOES make one pause and, “listen!”

As I traveled to upstate New York for my second Bachelor’s degree (in Music Therapy), I wondered how I would adjust to the new campus, new people, whether I could hide my hearing loss again, what the next couple years would be like?  My time in New Paltz was only a couple years, but it was jam-packed (pun intended). While I did feel extremely out-of-place there, as the people were so different than the family I had left back at MSU, I made a small, close-knit circle of friends.  One of my new friends even wore big ITC hearing aids!  He was the only friend I confided in about my hearing loss, and he even let me try on his hearing aids…for the first time, I heard in a balanced, loud way, and inside, I really liked it! 

Each semester there, I performed in a small Jazz Guitar Ensemble, and we’d rehearse in a small basement room; close enough that I could hear just fine, especially since we were all there playing through a PA system and had a drummer, bassist, and pianist!  Surprisingly, in an ear-training class, my professor asked me if I had Perfect Pitch!  I laughed, thinking that Perfect Pitch was for people like Mozart and those famous guys!  But, she had me go to the Music Dept. Head, who also tested me, and she said I did, too.  It was pretty trippy, having a hearing loss, yet being able to find pitches!  The next few years saw me completing my music therapy internship, and then privately teaching guitar and doing music therapy work with kids who have ASD’s (Autism Spectrum Disorders).  However, something was different…

When I was around 28, I started noticing my hearing seriously dropping again.  I decided to take the plunge and go find a new audiologist, and do things on my terms.  My girlfriend took me to my hearing tests and I learned that my hearing had dropped to a Mild – Profound ski-slope loss. She was there with me when the audi fitted me with my first pair of BTE’s.  Having, “new ears” in over a decade was disorienting, to say the least!  I was devastated that I couldn’t even recognize Led Zeppelin on the radio!  I tried to be gung-ho and wear them out to lunch.  Big mistake!  It was so loud that I got nauseous and had to take them out.  I slowly readjusted to them after all the years of going without.  My hearing kept dropping over the next few years, and I went through progressively stronger BTEs, as well as changed audiologists a couple more times.  I tried my second pair of BTEs with DAI boots and listening to my little ipod that way.  It was…interesting.  The harder music that I loved to listen to without my hearing aids, dishearteningly sounded somewhat like white noise through my hearing aids, so I’d usually end up just using my earbuds with the volume up louder.  My guitar sounded duller and quieter, and I also realized that I had lost a bunch of pitches on the upper register of the piano.  So it was an adjustment period for sure.

Over the last few years, my hearing has kept slowly deteriorating and with it, my self-confidence in music performance and overall communication with others.  I have become much more reserved and shy.  I haven’t played a gig since university, instead becoming a “bedroom shredder.”  I am now 36, and as of this writing, I have a hearing loss that starts at 70-80-ish dB, to 110-115 (severe – profound), sans hearing aids.  I went through 3 pairs of Starkey BTEs, eventually enjoying my Phonak Naida Q70UP BTE’s, along with a Roger FM Pen…devices that assist me greatly in hearing my professors in class (though even with these battery-powered helpers, I still encounter struggles.  By each day’s end, I am usually wiped from concentrating with my limited sight and hearing. 

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My music has been affected and I do feel anxious about my future as a Music Therapist, and how and what I will do in the possibility that I can no longer play and effectively work with clients.  That will be a road to travel if and when it appears.  For now, I will continue enjoying what music-making I can, and I will always empathically feel music quite deeply.  It will always be cathartic, intellectually stimulating, inspiring, and as healing as possible.  I encourage everyone to enjoy, and for those of us who have or do still play an instrument or few, keep making music whenever possible.  Yes, it very well may sound weird and perhaps you may even feel lost and/or discouraged.  I have to remember these words, too, when I feel down about my hearing.  I will pick up my guitars and hand-drums, or compose electronic music, and feel better, and in doing so, I realize and appreciate the perseverance of sound.

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