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Reply to Jaema: Tony's right. You need to let people know that you don't hear normally. Most will forget much of the time and talk facing away from you or, worse, behind you, but, when you obviously don't hear, they'll remember and come around to talk face to face. Recently, two of the women who volunteer with me had a nice conversation behind me (we were all working, unpacking totes of bread to stuff into freezers). Since I wasn't participating in the conversation I didn't know was happening, one of them realized that, moved closer, and said, "Shoot, Joyce doesn't even know we're talking" and they both came around to apologize. Everyone has learned to really shout if they come into the pantry and I'm back in the freezer room (my car outside is a huge clue).

During the four years long ago when I had crises several times each week where I was forced to lie still and vomit for hours, I was a crew leader for a fisheries data collection project. I started every time by letting them know what to do if I started into a crisis, and that took a lot of the pressure off me. I only started to have a crisis once while out on the river. I sat down on a big boulder, closed my eyes (visuals make things far worse), and concentrated on listening to all the birds sing…and the crisis failed to develop. I like to believe that being outdoors with a host of birds nearby, plus having let everyone know what might happen and what they should do, made it possible for me to skip that crisis almost completely. I failed to warn one of my clients, started to be sick during a meeting, raced out to my car, where I had barf bags, a blanket…all the comforts of home. That led to everyone spending the next few hours worrying about what they should do. I was very lucky that some helpful person didn't call the paramedics!

Hearing loss is invisible. Sure, some people will think it's a bother to deal with speaking so that you can understand, but most will make a real effort to help you. No one will think you're stupid if they know why you don't track conversations well. Many will go out of their way to face you, speak clearly. I think many of us remember the old phrase "deaf and dumb" and fear that everyone will associate HOH with stupidity, but stating the problem clearly and telling people how they can make it possible for you to hear will put that one to rest pretty quickly. Be proactive!

When I first lost all hearing in one ear due to inner ear disease, I was forced to quit being active as an amateur musician. I not only had loss, but recruitment, so playing in an ensemble or orchestra was downright painful, and I knew that I was often not in tune with the group. Because creative people need an outlet, I turned to learning to knit intricate Aran patterns and spending more time painting. There are some things that may be better set aside if they're all uphill battle and very little satisfaction–but they're few and far between. I've read recently about musicians who got CIs and are still playing; technology has really advanced during the past 40 years, and I envy them.

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Replies to "Reply to Jaema: Tony's right. You need to let people know that you don't hear normally...."

You and my husband can be “musical” together. He’s often in “tune” with his own tuning fork when he sing, well, belts out his music. Lol

I have a question about hearing loss. At what point does a person qualify for CI?

I did volunteer at a local organization giving food away. The volunteers were super nice. However, where we stood around large tables, doing our jobs, I wasn't close enough to hear them. I told everyone I wore hearing aids but couldn't hear well. People forget and just go about talking to each other. They may say a few sentences louder but then forget, I couldn't hear them. This is so very frustrating. I volunteered because I wanted to do something to help but also because even though I have a husband. I quit volunteering because I can't hear the people. My husband doesn't like the fact he has to talk loudly to me. He talks to me from a room which is the room which is five rooms away. I tell him I can't hear him–then he gets upset. He has a very hard time dealing with it. Well, I have had hearing loss which started when my first husband came home at 3:00 am and ripped me out of a sound sleep and hit me over and over, breaking my ear drum. That is another story. He got married seven times and abused every wife! My daughter told me I answered people with statements which weren't even related to the question. I wondered why they looked at me very puzzled. I couldn't even hear my baby cry when I got remarried and had a baby. My little boy used to come to me and say: "Mommy, your baby is crying." I got another place for my baby to sleep or whatever near the kitchen where I could see her and hear her in the day time.

I don't like to go anywhere anymore. I can't hear what people are saying. After I receive the vaccinations against COVID, I am going to get fitted for blue tooth hearing aids. I am very anxious!

I agree with you that hearing loss is invisible. It's invisible in so many ways and on so many levels, isn't it. Thank you for sharing your story here. It seems like the people around you are/were willing to be supportive to you and I think that's great. I do let people know that I don't hear well; however, for me, it doesn't help to give out guidelines ahead of time for how people can best interact with me and my hearing loss. I know that people tend to ask for this; it just isn't helpful for me. (It isn't always helpful to stand on my R side each and every moment and in every situation, for example, and there’s a bit of wasted time while they suddenly maneuver themselves about followed by however I choose to respond to those movements.) The explanations are just too long. I will, however, instruct them in the moment as to what they might possibly could do in order to help me out right then and there.

Often, there seemed to be literally nothing that could be done to help my situation, and because of this perception, I developed beliefs around what I could do and couldn't do, career-wise, that were extremely limiting. I'm learning to shake that belief system up a little bit now: hence, my quest to find stories of other people with hearing loss successfully advancing in their careers. Again, thanks for your story and I wish you all the best.

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