A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Support Groups’

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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I Don’t Want to Go Through Life Getting Plain Toast

In coping strategies, Deafness, Hearing Loss, late deafened, Support on June 23, 2013 at 10:02 am

by Michele Linder

Do you ever wonder what the benefit of joining a hearing loss group is? For me, the most amazing thing has been connecting with others just like me. This is a common theme of newcomers to SayWhatClub… they’ve gone through most of their life never knowing another person with hearing loss. They’ve never experienced the understanding of another who knows what it’s like to be them. This one, simple thing is what has most impacted my life after joining this group.

Several months ago, I read Cheryl Strayed’s “Tiny Beautiful Things”, a compilation of Cheryl’s “Dear Sugar, the Rumpus Advice Column”, and I found much of the advice Sugar gave to the people who wrote to her could be applied to anything in life that is hard.

In COLUMN #44: HOW YOU GET UNSTUCK, the letter writer, “Stuck”, is a woman who miscarried at 6 months and was devastated by her loss… she had many well meaning people in her life who told her she should “be over her loss by now”, and some minimized her struggle in an attempt to push her out of her grief.

Here, in part, is what Dear Sugar told “Stuck”, with some of the specifics stricken through and substituted with words that apply to hearing loss:

“Many of those people love you and are worthy of your love, but they are not the people who will be helpful to you when it comes to healing the pain of your daughter’s death losing your hearing.

They live on Planet Earth. You live on Planet My Baby Died My Hearing Died.

It seems to me that you feel like you’re all alone there. You aren’t. There are women people with hearing loss reading this right now who have tears in their eyes. You need to find those women people, darling. They’re your tribe.

I know because I’ve lived on a few planets that aren’t Planet Earth myself.

The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you’re talking about because she they experienced that thing too cannot be over-estimated. Call Contact your local hospitals and birth Deaf Hard of Hearing Service centers and inquire about support groups for people who’ve lost babies at or before or shortly after birth their hearing. Find online communities where you can have conversations with people during which you don’t have to pretend a thing.”

The SayWhatClub has become my tribe, and five years later I’m still here. Why? Because hearing loss is an ongoing challenge for which I will always need support from someone else who knows in a flash precisely what I’m talking about and going through. Plus, I get so much satisfaction from paying it forward. Though, if I’m honest, I admit to sometimes getting tired of talking about hearing loss. I get a bit worn out by sharing my story over and over, and there are times when I wonder if anything I’m contributing is making any difference to anyone who is reading?

But then one day someone relatively new to the forum emails you to tell you that the way in which you replied to their query made them move further toward finding out what works for them in their hearing loss journey, and that “…you are a clear spot in the forest…” You feel a renewed sense of purpose and find the energy to type the words one more time.

That happened just a few months ago when a new subscriber wrote to my home list to thank everyone for the warm welcome and to express how glad they were to have joined SayWhatClub… happy to be learning things to help them deal with their own hearing loss.

“I love that I’m already learning! …It’s nice to know there are others who understand. I don’t know any people in real life that have hearing trouble.

I am not yet good about starting out by telling people I have trouble hearing them. It’s not that I’m ashamed of it, but I’m just painfully shy in general. I guess I’ll just have to get over that if I want to communicate. At a restaurant this weekend, I ordered a grilled sourdough sandwich. The server said something, I asked her to repeat, I heard “sourdough…white or wheat?” and thought “Neat, whole wheat sourdough.” When I took a bite, I told my husband I was fairly certain that it was plain toast. He said, “Didn’t you hear her say they were all out of sourdough?” I don’t want to go through life getting plain toast.”

Thank you, Tracy, for that jewel!

If you don’t want to go through life getting plain toast, SayWhatClub might just be the tribe for you.