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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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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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