← Return to Anxiety and disbelief over sudden hearing loss and tinnitus

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@julieo4

I've been living with hearing loss since the 60s. Had I not discovered Self Help for Hard of Hearing People, Inc. (SHHH) in 1983 I know I'd be expressing the same things here. SHHH changed its name to The Hearing Loss Association of America in 2005. Its mission has always been to make hearing loss an issue of concern by providing information, educational opportunities, peer support & advocacy. I was a member of the first elected national board of the organization, and ultimately served two terms as president. I have watched the development of technology; the metamorphosis of people with hearing loss, the identification of a population separate from the culturally Deaf population, and a movement to change the stereotypes that hard of hearing people are often pegged with. You know; absent minded, not smart, snobby, anti social, reclusive, no fun, etc. We allow those labels to define us when we hide our hearing loss and stop doing things because of it. There are many excellent hearing assistive technologies that can cut out noise in restaurants and at social gatherings, but the reality is...we do best when we can talk one on one with people. Our disability is invisible. We often choose to keep it that way by not using the assistive technologies because they show. Nearly every ad you see on TV or in print media pushes the 'invisibility ' of hearing aids. They all market denial, and we embrace that concept without realizing it.

Yes, I hid my hearing technologies for years. Way back in the early 90s I discovered a hand held microphone that would plug into the direct audio input of my hearing aid. I didn't even know my aids had that feature. I learned about it from another member of the SHHH board. It was a Phonak device. It changed my life. I even went back to school and earned a masters degree in my 50s because of that device, along with others I learned about afterwards. The funniest experience I had when using it, happened early on. I was in a social group where people were talking about the recent election...Ronald Reagan to date myself. I was participating in the discussion freely because of that microphone. One of the ladies in the group took me aside and said something that I will never forget. "Whatever that is that you're using is amazing. I've known you for years and never thought you were smart." I am sure she wanted to swallow her tongue after saying that, but it gave me the opportunity to explain what it was. And I've been sharing information ever since.

SHHH/HLAA has had such an impact on my life that I decided long ago to give back however I could. I've remained involved. I've helped develop new chapters, I've advocated and I've learned from others. I continue to do a lot of presentations for service organizations, schools and anyone who is interested, even now that I'm retired. I'm in my 70s. Speaking of retirement... I retired from a job I loved when I was in my 30s because of my hearing loss. I went back to a similar job in my 50s because of technology. That hand held microphone worked for years until I decided to get a cochlear implant. That too was a game changer.

I am thankful that devices that work like that old DIA hand held mike did are now wireless. They keep me going socially. It isn't always easy. Some people avoid me because they have difficulty understanding that I miss things. It's their problem, or at least that's how I try to look at it. I can only do what technology allows me to do. I use it all the time. I know I'm smart. I love it when I have the opportunity I tell people what it is. Young people are fascinated by it and often ask for more information...because their parents or grandparents 'really need to know about this'. These same young folks should know about captioned telephones and speech to text options on cell phones. It's all out there, but so few who become hard of hearing even know it's there. What a shame.

As long as I'm writing a dissertation here, I want to say more about HLAA. HLAA needs YOU. It's a membership organization. It advocates for you. If everyone who was concerned about hearing loss joined HLAA, the legislators would open their ears a bit more about hearing aid costs, Medicare not covering them, medical research, etc. If there isn't an HLAA chapter in your area, start one. Go public with your hearing loss and set up a discussion group. Talk about it. It's only invisible because we allow it to be. No doubt it hurts. It leads to depression, and now they are saying it can lead to cognitive decline due to isolation. Stay involved. Do things even if you have to do them differently. Find new hobbies; meet other people with hearing loss who 'get it'. You will not regret it. http://www.hearingloss.org

LOL. After that one, I think I'd like a glass of wine with my Wisconsin cheese!

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Replies to "I've been living with hearing loss since the 60s. Had I not discovered Self Help for..."

Yes this group a lot. ( and Mayo) Space is an issue of having a hearing loss chapter in Philadelphia . The current leaders is In middle of a move and may not resume the group. They started philly chapter 4-5 years ago. I want to continue but I do not have facility for it. Coffee shops in the day time may be possible - no positive feedback on that. I will get advice at the convention in Rochester hopefully . I am on the steering committee of the phila chapter Hard but important