A Hearing Loss & Late Deafened Blog

Greetings from the SayWhatClub Convention in Baltimore, Maryland, by Michele Linder

In Accommodations for Deaf, Deafness, Hard of hearing culture, Hearing Loss, late deafened, Lip Reading, Travel on May 14, 2011 at 4:26 pm

I’m attending the 2011 SayWhatClub Convention in Baltimore, Maryland — another first experience (who would have thought that at age 51 I’d still be losing my virginity in so many ways :o) for me. As someone who has had hearing loss most of my life, but with very limited contact and experience with others who cannot hear, I highly recommend jumping at the chance to gather with others who know exactly what life is like for you. It’s a very eye-opening experience!!  Usually, I’m the only one vying for the prime lip/speech reading vantage point in a group setting, where there will be key speakers, but when I stepped into the hospitality room at the hotel on Wednesday night, I realized everyone else probably had that very same skill (doing everything physically and visually possible for the best success at understanding what is being said) kick in as they entered the room.  It made me smile…

I’ve had the pleasure of taking part in some great workshops here at the convention, and the last presentation yesterday was given by Jane Schlau, Ed.D., a former SayWhatClub’er who lost her hearing over a two year period. Since that time, Jane has earned a doctoral degree in education and is currently the Principal of St. Mary’s School for the Deaf in Buffalo, so you can safely assume she has learned to cope amazingly well, but she will tell you it wasn’t at all an easy road to travel.  As I listened to her story, I saw myself in the challenges she came up against, and also in her initial lack of response to those challenges due to doubt, uncertainty, and the freakishly frightful panic we often feel when faced with the realization that we aren’t getting anything that is said.  It’s that panic that works to keep us from hearing and understanding anything — the proverbial wrench in the workings of how you fill in the blanks to hear and understand in the absence of hearing — and that panic is something everyone with hearing loss has to learn to deal with if they want to move beyond doing “nothing”.  In my opinion it’s the most important thing to overcome when faced with any obstacle.

As part of Jane’s presentation she had us do a “Left Hand Column” activity where we outlined a recent and difficult hearing challenge on the left hand side of a handout she provided, and then on the right hand side we wrote what our reaction was.  The following is one of Jane’s examples:

LEFT HAND COLUMN (What I’m thinking):  “I wish I knew what to say; I wanna say something; I wanna participate.  I know as much as these folks.”

RESPONSE (What I said or did):  “Nothing”

I was already feeling emotional as I began to fill in my own “Left Hand Column” handout, as I related to so many of the things Jane was thinking and had done nothing about.  I’ve gone through much of my life, just like Jane, knowing I’m just as smart, just as capable, and just as worthy to participate, yet hesitating to respond because of not wanting to feel embarrassed or stupid, and not wanting to interrupt, slow things down, or stop the flow of conversation.  This is something I’ve improved upon, but am still working at… (I’m not sure we ever master it fully, as there will always be new situations where we feel anxious — that’s life!)  I’m a work in progress.

My eyes filled with tears as I wrote on my own left hand side of the paper, and what I did in response:

LEFT HAND COLUMN (What I’m thinking):  “It’s another noisy family gathering; everybody is talking and laughing, even the kids, but I can’t keep up;  I can’t follow anything that’s being said.  I so much want to be a part of it.”

RESPONSE (What I said or did):  “Nothing”

Just reliving such a scene in my mind made me cry, but what I realized is something else that Jane touched on.  There are certain times when “Nothing” is okay.  That there are events so noisy and impossible to follow that no amount of repeating or rephrasing will work in our favor.  At this last family gathering, I turned the corner and decided that the visual of the people I love — interacting, laughing, talking — was enough, as I got so much more than what came to my brain through my eyes. I knew they were all talking about music and telling stories I had probably heard before, and it was just enough being with them, seeing them laugh, smile, and have a good time with each other.  Don’t get me wrong, being able to hear and participate would be so much better, but I’m not going to let the lack of that ability rob me of what I can take in and embrace.  On a different day it might have been too much to bear and I would have had to leave the room and busy myself with other things, but on this day it was enough.

As everyone finished with the activity Jane had assigned, she had a few volunteers read what they wrote. I so wanted to feel confident enough to raise my hand, but my emotions were so close to the surface I knew I couldn’t do it without crying, so I did nothing.  Clearly I’ve much more work to do.  I think we all are works in progress and will continue to face new uncharted territory, as you can never know exactly how best to respond in every single situation, but it’s not necessary.

Living with hearing loss is a learning process, just like anything else, and I’m up to the challenge of moving farther down that road.  I think many of you are too.

So, when our next SayWhatClub Convention rolls around and you are on the fence as to whether to attend, go ahead and jump over to the “Yes!” side and register.  It is so nice to meet others who are taking the bull of hearing loss by the horns and wrestling him to the ground!!  That doesn’t mean that son-of-a-gun won’t rally to put you on the defensive again, but when you witness that there are others who are continually facing every day with little or no hearing and doing just fine, it somehow gives you the strength you need on your worst day and let’s you know you are not alone.

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  1. Wonderful post, Michele. My own right-hand column had a lot of “Nothing” responses. Why didn’t I ask for a repeat? Why didn’t I move closer? Why didn’t I bring my FM system? Why do I often feel like I’m the only one who can’t hear? It’s a daily struggle.

    • Thanks, Lorne, it is a daily struggle and one no one has to make alone. I tried for the better part of 40 years and it wasn’t until I found the SayWhatClub that I finally started to know that I was okay and I could be stronger and learn to deal with my hearing loss better. I hope others that are floundering will discover that. ~~Michele

  2. So sorry I’m not there this year Michele. Would have loved to have met my better half.:)

    • No need to be sorry, Pearl… we’ll get together before next year… though it would have been great to meet you among this wonderful group!! Cheers!!

  3. I can so relate to the “do nothing” which was where I was at several years ago. When we finally accept the fact that we DESERVE to hear what’s being said and we WANT to hear what’s being said and that it’s okay to ask for repeats and rephrasing, then we will have the courage to be more assertive and feel that we deserve to be part of whats happening.
    pearl

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