You’re Deaf – Now What?

Each time I lost my hearing (1993 for my right ear, 2008 for my left), I was surprised and disappointed by one thing: I was not offered any type of support for dealing with such a monumental loss. And this is not to say anything bad about my audiologists and doctors, because I really like them. But other people have mentioned it too, the lack of resources, information and support for late-deafened adults, or anyone suffering from sudden loss of hearing.

In 1993, the only thing offered to me was a different type of hearing aid, a bi-CROS that brought in the sounds from my newly-deaf side. I was thrilled with my new hearing aids, so no complaints there. But I had lost so much hearing that I could no longer hear my alarm clock for work each morning. I had NO idea that there were ALDS (assistive listening devices) for hearing loss, beyond an amplifier for the phone. The audiologist didn’t tell me about them. My husband at the time was the one who talked to the audiologist and found out about an alarm clock that would shake the bed to wake me up. I mean, they sold them right in the office – why wouldn’t she offer that information, knowing I had just lost all the hearing in my right ear and had a profound loss in the left?!

The internet was in its infancy in 1993, so the alarm clock and new hearing aids were the full extent of support I received. In 2008, my loss was much greater because I was now completely and totally deaf. They couldn’t offer me hearing aids. I didn’t know sign language, and neither did any of my family or friends. Yet again, once I got the hearing test that confirmed I was hearing absolutely nothing, I didn’t receive any information on how to deal with being completely deaf. That just blows my mind.

They put me on steroids to see if my hearing would come back; just like in 1993, they didn’t help. When I went back in for the follow-up visit, I was prepared. Thanks to the internet, I had done my own research. I knew I could receive a free TTY if the doctor signed off on it, and I knew about cochlear implants. I was the one who asked if I could get CIs (although hopefully if I hadn’t immediately asked, they would have offered it as an option). I was the one who asked if they could help me get the TTY. I found the state lending program that also gave me a flashing light for the phone (not that I was using the phone at that time).

Can you imagine losing all your vision, going to the doctor and having them say, “Well, yep, you’re blind,” and then sending you on your way? You have to hope they’d give you a list of resources for cane training, a service dog, learning Braille, programs to voice text for you, etc.

I didn’t find online sources of support until 1997, when I suffered from a horrific ear infection in my good ear. I spent almost two weeks without my hearing aids, using just the very limited hearing in that ear – it was already profoundly deaf, and I spent much of that time with my ear filled with medicine and covered with a cotton ball. I was a single mom at that time, and I was scared at how close to ‘deaf’ I really was. I had been able to fool myself into complacency with my hearing aids, and not having them to rely on really scared me. So I started searching for hearing loss support groups, hoping to meet other people like me. I have never interacted on a regular basis with someone that had hearing loss, so I didn’t have any real-life support of that type.

I found the Say What Club, and they are still active today. Back then, it was just one or two mailing lists; you signed up and they assigned you to a list, and then you would receive everybody’s emails. That was where I first learned of CIs and many of the ALDs I’m familiar with today.

I also joined SHHH, which later became HLAA (Hearing Loss Association of America), and ALDA, the Association of Late Deafened Adults. These are large organizations that have websites with lots of information, newsletters/magazines, and yearly conventions. Nowadays I am also a member of Illinois Cochlear Implant Chapter, which has local meetings every other month.

A view of my left CI (purple metallic color)

A view of my left CI (purple metallic color)

If you’re dealing with hearing loss, whether it’s recent or not, it can really help to be part of an online support group. I love email because it eliminates communication barriers; real life meetings are also nice because all the ones I’ve been to are captioned with CART. Now that I have my CIs, I usually don’t need CART to understand at a meeting, but it is still hit or miss whether I’ll understand a question from someone in the audience. CART captions everything being said, and it’s nice to utilize it for those soft-voiced questions or for a speaker with a heavy accent.

Losing your hearing can really isolate you. It’s tempting to want to stay home and avoid social interaction because it’s so exhausting, trying to read lips and follow conversations. It can be disheartening to be part of a large group and have no idea why everyone is laughing. Being part of a support group means that these people know what it’s like to have a hearing loss, and they don’t mind doing whatever needs to be done to be understood. At conventions, you’ll see people facing each other and reading lips, signing, writing notes. I still remember our first ALDA convention in 1999, when we joined others for dinner and dancing. We didn’t know how those who were deaf could follow the beat, until some friends showed me and Dave that if you hold onto a balloon, you can feel the vibrations of the music. How cool is that?!

Hopefully audiologists will catch on and realize that more needs to be done to support a newly-deafened adult. I would be curious, if anyone out there is a parent of a child who was diagnosed with hearing loss, if they were offered sources of support and help by their audiologist. Is it just adults who are sent off to deal with this on their own?

About wendiwendy

This was my original info in 2008: I'm a newly-deafened adult. I'm still getting used to the sudden silence, and I want to talk in the only manner where I can still hear my voice...in print. Now: I'm a bionic woman and I can hear myself roar!!

Posted on April 3, 2014, in Cochlear Implants & Hearing Loss, Medical Visits and tagged , , , , , , , , . Bookmark the permalink. 8 Comments.

  1. For the babies diagnosed there is all kinds of support-the early start program, state programs, and tons of brochures on communication options…I felt well-supported, almost too much so. It would have been terrifying to be just let out of the Dr.s office with nothing! I agreed we need to make sure there is support, and knowledge of resources, for everyone diagnosed with hearing loss.

    • Ellen, thank you SO much for your comment. It’s fantastic to know that you got so much support!

      It’s obviously possible for them to give this information, then. Hopefully they’ll soon realize adults need it as much as children (or, rather, the parents of the children). :)

  2. Thank you for posting this. I have been dealing with this over the past year and have as much shock over the apathy and callousness of medical specialists as I do over my hearing loss.

    • Trishana, I am so sorry you’re dealing with this too. I think it’s very hard for people to imagine what it’s really like to have hearing loss — because it’s invisible, they can’t put themselves in our place and consider the huge impact it has. Sending good thoughts to you!

  3. Great blog post- you are very right it is here is a hearing aid come in and if you need it adjusted. I did most of my research online and searched out people. I did get referred to vocational rehab which referred me to Dear and hard of hearing for the state which has been wonderful. But you are right you need to find these things you are left dangling. On a side note I love the purple metallic.

    • Isn’t the purple great?! I love using bright colors on my CIs. :D

      I think it’s awesome that you were at least told about VR. I never even knew such a think existed until I met Dave in 1997; he was using VR services and explained it to me.

      Thank goodness we have the internet! :)

  4. My daughter, Molly, was diagnosed in second grade with moderate hearing loss. We got the aids and the audiologist recommended the FM but that was it. It wasn’t until she was in high school that I found a hearing loss support group for teens in a different school district. Molly didn’t want to go at all. The following year I made a deal with her…one meeting and if she hated it she would not have to go back. She absolutely loved it. They meet 5 times in the school year,and it’s all teenagers trying to deal with hearing loss in high school, at dances, during drivers education etc. She has made lifelong friends and they are the only ones ( in Molly’s words) that truly get how hard hearing loss can be.

    • Annie, I think it is awesome that Molly has a support group! (Sad that you had to be the one to find it, but … GO YOU!!) I would have killed to have something like that when I was in school. I’m so happy that Molly loves it. And gah, I forgot about driver’s ed. My ‘bad’ ear is the one next to the passenger in a car (if I’m driving), and I used to be so nervous during behind-the-wheel (and also scared I wouldn’t hear the person testing me for my driver’s license). Give Molly a hug from me!

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