Not Much of a Joiner?

NYnewyorkcitychapter

“I’ve never been much of a joiner.”

I was encouraging an acquaintance with hearing loss to come to one of our HLAA Chapter meetings. I told her about our informative programs and guest speakers. I also said the meetings were a chance to meet other people with hearing loss.

She agreed to give it a try, meanwhile explaining that she wasn’t much of a joiner and not to expect to see her often.

That’s what I always used to say too. “Thanks, but I’m not much of a joiner.”

Here are some groups I never joined: the PTA, a church, the co-op board, the block association, political action groups, yoga classes, meditation groups, group therapy, French classes, Al-anon, dog training.

I always thought I just wasn’t much of a joiner. But suddenly (how could I not have seen this before?) I realized that it had everything to do with my hearing. It’s not that I don’t like people. Or committees. Or volunteer work. Or meditation. Or a well-trained dog. I just can’t hear.

It took me a while to join HLAA. I first went to one of the annual conventions in the course of reporting for my first book. The research seminar that year was on advances in finding a cure for hearing loss, primarily through gene therapy and stem cell therapy. It was fascinating but, more important, I could “hear” it. I could hear it by virtue of the live captioning and the hearing loop that had been installed for the event.

Someone I met there invited me to come to a chapter meeting back in New York. I’m not really a joiner, I said, but come September I did show up at a chapter meeting. Captions! A hearing loop! A really interesting program, with a panel of audiologists talking about hearing strategies.

What I could not do then and still cannot do is join in the socializing before and after the formal program. Luckily we have name tags so I know who I’m talking to, which is a tremendous help. But a substantive conversation is out of the question. Just as I always did before I told people I had hearing loss, in the old days of denial, I nod and smile and ask encouraging questions. But if you’re reading this, and you’ve tried talking to me at a meeting, it’s possible I haven’t heard a word. Follow up with an email!

I’m open about my hearing loss. In fact, I joke that hearing loss has become my profession. But there are certain circumstances that just don’t work for me. One is social time at our chapter meetings. Another is exercise class, which I will write about in my next post.IMG_3613

The photo at left was taken at last year’s New York Walk4Hearing, an annual event that will be held this year on September 23. If you’re not sure you want to try a chapter meeting, come to the Walk. No need to register. Details on our website. 

17 thoughts on “Not Much of a Joiner?

  1. Hearing others and carrying on conversations at events is a big challenge, as Katherine points out. But she chooses to avoid the challenges of crowd noise and poor room acoustics. Others of us “deafies” turn to technology to tune in to chat. Almost all hearing aid makers now sell small hand-held or clip-on microphones with built-in transmitters that deliver speech from others within arm’s length wirelessly to our hearing devices. Similar products are sold by third-party manufacturers. So if you want to engage socially you can, albeit at a price for the equipment and with help from your audiologist or guidance from your local Hearing Loss Association chapter.

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    • You are correct and I’m glad you wrote that comment. I have a Roger Pen, however, which I have never found useful in a noisy environment. I do better just picking up what I can of the speaker’s voice and reading lips. Part of the problem is the user speaking into the pen — it’s either too far away, or being waved around, or it’s in front of the mouth so I can’t read lips. I also find it admits so much ambient noise that it’s close to useless in noisy situations, and that’s where I need it most. I know others with that system with similar problems. It works really well if you’re in a business meeting and you’re the boss and you can make everyone speak one at a time and clearly. But I’m not talking about business meetings and I’m not a boss.
      The clip on mic might work better but I’m reluctant to sink more money into the Roger system. And I don’t think it would solve the ambient noise problem. People with Made for IPhone hearing aids seem to do better in noise and next time I get a hearing aid I might try that. But since I also have a cochlear implant it’s more complicated. Also, Jerry, what do you do if you’re at dinner with eight or ten people, with two or three conversations going on at the table? I can ask everyone to speak one at a time, and sometimes I do that if I know them well. But I’m reluctant to impose that kind of stricture on others’ behavior, especially when it’s someone who has been nice enough to cook a delicious dinner and invite interesting people. It’s a dilemma.

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      • All points well taken, Katherine. Where we differ is chiefly in the Roger pen’s usefulness for me in social gatherings. I am thankful to be able to hear and converse one-to-one in noise, such as at the receptions preceding our chapter meetings; also when dining with my spouse in noisy restaurants, the pen worn on a necklace or clipped to a lapel enables me to understand her words.
        I, too, am unhappy with the amount of background noise the Roger pen transmits, and, like you, unwilling to buy and give mics to others with whom we dine. So, even around the dining table with family, hearing is both challenging and frustrating.

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  2. Hi Katherine,
    Great post as usual. I now have leukemia in addition to (unrelated to) hearing loss, and all the mask-wearing at the hospital is a big challenge. I’ve overcome that with masks that have a clear window. Another thing I’ve been able to do is FaceTime into my little Pilates class. I can’t go in person, but with my teacher’s voice Bluetoothed to my hearing aids, I feel just like I’m there. I can do the mat portion of the class with no trouble at all, and
    I can even talk to the teacher and my buddies who are there with her.

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    • HI Julie, I’m so sorry about the leukemia. What a rotten blow. I hope the treatments are not too difficult.
      I’m curious about Bluetooth and the class. Is the teacher speaking into a phone and is your bluetooth connected to your phone? As readers can probably tell, I’m not great with technology. Would love to know more about how this works.
      Is your Pilates studio carpeted? I find the room itself one of the biggest problems. The room where I go is designed for multiple use — dance classes, yoga, etc. So it has bare wood floors and lots of mirrors and windows. The acoustics are terrible!

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      • Julie, Forgot to add that I’m so glad you mentioned the hospital masks with the clear window. It’s a great invention and is so important for people with hearing loss to know about.

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  3. Good story, Katherine! The staff at the Center for Hearing and Communication in NYC made it their
    business to keep me hearing. I started using one of the very first FM systems with a mike and neck loop and have kept using technology. At one point, I had a mike on a long wire that plugged directly into my aid. I would put the mike in front of the person and say “You’re on CNN!” Everyone was intrigued and happy to talk to me. Now that my hearing has deteriorated and my Oticon mike doesn’t do too well in noise, I use the mike on the iPhone with the Notes app. The phone transcribes what the person is saying so you can read it. I find it helpful.

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    • I don’t have the iPhone mic. Should get one, especially for the social parts of our chapter meetings. But I think some of us just have a harder time than others putting ourselves out there. You were lucky to have CHC behind you. Many people, especially those for whom the loss is unexpected and comes later in adult life, have no choice but to muddle along, trying to figure it out on their own. I think they need reassurance that it’s not their fault if they can’t manage as well as some others. You’re an inspiration, but a tough act to follow.
      You noticed the picture I used with this post?

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      • The mike is on your phone. Go to Notes and click on the pencil on the lower right part of the screen.
        You will get a blank page and the keyboard. The mike icon is the third in on the last line. Click on that and
        point the phone at the person talking. The phone will transcribe what the person is saying. I’ll be happy to show you how it works in person. I love the photo. It’s from the Disability Pride Day parade. I’m carrying a
        purple HLAA Umbrella.

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  4. I have been blessed with a lot of good support! My hearing loss showed up when I was in my mid 40s, studying for a Master’s in Speech Pathology at Teacher’s College, Columbia University. The supervisor of
    my student internship took me under her wing and introduced me to a top audiologist in NYC. I then switched to a hearing aid dealer in New Jersey because that was where I was living. The dealer introduced me to SHHH! When I moved to New York, I became a CHC client and was involved in many different programs, both as a participant and as a leader. What I’ve learned over the years is, that when I speak up and help myself, I’m helping everyone in the hearing loss community. “Speak Up, Please!” my most recent CHC blog, can be found at http://chchearing.org/blog/author/ruth/

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  5. I do know the mic icon on the phone and the notes app. I thought you were referring to a mic you attached, like Richard Einhorn has.
    I prefer iHear to Notes for that kind of communication,I use it all the time in a small group. I put it on the table and it will pick up all the voices at a standard size dining table, and it’s pretty accurate. Not always, like auto-correct it sometimes is sure you’re trying to say something different from what you’re saying.
    iHear is a free app on iPhone. I’m not sure about Androids.

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  6. There are many things one could say to describe me and “I am not a joiner” would have to be right near the top! I believe we share a similar bi-modal arrangement – Ci in the left and HA in the right – which works extremely well one to one or in small groups with only one person at a time speaking. I usually avoid groups and characteristically noisy situations like brush fires. It would be good to be near an HLAA chapter meeting like your NYC chapter. It sounds interesting and rewarding.

    I just spent a day and a night with dear friends and had a great time understanding – except when there were two conversations going a the same time. Even breakfast in a noisy neighborhood diner in Belfast, Maine was successful. We sat close and spoke one at a time. Things work well as long as I forego the persistent expectation of “normal” hearing. Things do seem to be improving bit by bit. After almost two years post activation of my CI subtile changes seem to continue. For me he key is to accept the quality of what I hear as my “normal” and be happy with better understanding, which is, after all, what we’re after.

    I would happily join a near by HLAA chapter. Alas, the nearest is about 2 hours away. My hearing loss community is mostly on-line with Hearing journey and blogs like yours. Thank you for your advocacy and your voice.

    Jerry

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    • If you’re ever in New York on the third Tuesday of the month, come join our chapter meeting. The information is on our website, hearinglossnyc.org.
      All are welcome, no advance registration required. We have hearing assistance in the form of CART and a hearing loop.
      And we have great meetings! This Tuesday (April 17), Kelly Tremblay, auditory neurologist and developer of the restaurant app iHearU, will be our speaker.

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