A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Deafness’

How to Ride a Bike with Hearing Loss!

In Cochlear Implants, deaf, Deafness, Hearing Loss, Partially Deaf, SWC convention, Travel, Uncategorized on March 21, 2017 at 11:13 pm

By Robyn Carter

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I was implanted back in 1993.  I was the 8th adult in New Zealand to receive the implant. As there were not many others and no support group back then, I started looking online for some hearing loss/cochlear implant support group to join.  I also was the editor of our NZ Cochlear Implant Newsletter so I was looking for articles to share to our recipients and would-be recipients here in New Zealand.

And so I found the SWC – in fact, I found Bob’s email first. Bob had written an article for the ALDA about faking it, when you don’t really hear something, but are too embarrassed to admit it, or too tired so you nod your head, laugh and pretend you knew anyway. This article resonated with me as I was such a good faker. So when I found Bob’s email address, I flicked him an email to tell him how much I enjoyed his article.   The result of this was that he just subscribed me to the SWC.  That was in 1995. And I’m still here.

There was only one email list back then – SWCForum. It was a busy list full of controversial conversation, often heated, often hilarious, and from there I forged many friends – many whom are still my friends today. Some of them are long gone from SWC, but there’s a good many still on the listserv with me today.

The list enabled us to converse like we never had before. We could write our feelings, what was happening, we were lifted when we were down, and in turn shared our experiences so that others may grow. There were fights, indignation, jokes, laughter and sometimes even tears, but most of all there was acceptance.  It’s the feeling that we have finally found a niche where we could be what we were without fear of ridicule for being hard of hearing.

I was the only one with a cochlear implant back then, and I was careful not to emphasise it too much as many people were still very anti implants.  Gradually I watched people accept the technology and embrace it, and I’ve seen many who swore they never would get one, actually have one.  I chuckle quietly, but secretly I’m thrilled they have the gift of hearing somewhat restored so they can enjoy life again. And I’m overjoyed, that this hasn’t meant that they left SWC, in fact most stayed and the list is richer for their experiences that they share.

I’ve watched the list grow – from a single list – SWCForum, to Six lists, 3 Facebook pages, a blog, and we even have a twitter account somewhere!  Each list, although similar because we all share the trait of hard of hearing, is different because of the personalities on each list.

SayWhatClub is now an incorporated society run by volunteers. At the top we have the Board of Directors who meet monthly and take responsibility for the club’s growth, putting in place improvements and try and keep up with the ever changing technology over the years.

We have a number of committees that ensure the smooth daily running of the organisation, from the website, to welcoming new members, and to ensuring the lists don’t stagnate, and for organising our yearly conventions.

We have a convention every year in a different part of America each time. These involve workshops, socialising, and loads of fun. You get to meet in person the people you’ve been talking to for years. I’ve been very lucky to attend three of these – one in Philadelphia, one in San Antonio, and one in Boise, Idaho. The friendships that I had forged over the years, were now cemented in person.

SWCers come from all over the world. We have USA and Canadian members, but also Australia, Netherlands, Finland, the UK, and India to name but a few.  We are a diverse group, from different backgrounds, different religions,  but our hearing loss binds us together.

SWC for me has helped me grow as a person. It’s given me opportunities that I never have been given otherwise. It’s helped my confidence, it’s made me more patient, it’s taught me about American Politics (although I’m not sure I’m richer for that!), it’s taught me about different cultures, but most of all it has taught me that valuable friendships can be made across oceans, across cultural divides, across political divides, and no matter what we say – we’re still friends.

It’s now 2017.  I’ve now been a member of the SWC for 22 years.  I’m still here. My implant is now 24 years old and I’m starting to feel old!

Check out the SWC Website, and if it’s what you’re looking for, click “Join”. You won’t be disappointed.

You can also join our Facebook Groups, we have two – one for people between 18 and 40, SWC Gen-Y. The other  for everyone, Say What Club, Friends With Hearing Loss.  We also have a public Facebook page, SayWhatClub, A Worldwide Forum for People with Hearing Loss where we share many hearing loss-related articles, videos, news items, and useable information.

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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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