Somewhere Between Deaf and Hearing

I have had this recurring dream for over ten years now, ever since I got my first set of hearing aids…. I am standing, surrounding by all of my friends, as their mouths move and no sounds come out.  The longer I stand silent and confused, the more they blur and fade away.  I turn and see strangers standing nearby, hands moving, dancing.  I move toward them, but when they see me coming they turn their backs.  The dream ends with me standing in the middle, alone.

You don’t need a book of dream interpretations to figure out the hidden meaning in this one. It’s pretty clear where  this dream is coming from.  When you lose your hearing by degrees, it can feel like you’re trapped between two worlds, and belong to none.

For most of my life, I felt like a broken hearing person.  Even before I knew I had hearing loss, my conversations were mostly guessing games and hard work.  People often saw me as daydreamy, spacey, aloof, because if I wasn’t really focusing on understanding what was being said to me, I generally missed the point entirely.  Or wandered off in the middle of a conversation, not realizing people were even talking to me.  People get tired of being asked to repeat themselves all the time, and it really doesn’t take long before you start to internalize that you’re just not trying hard enough, that your communication needs are an inconvenience, that there’s something wrong with you. I stopped wearing my hearing aids, I stopped telling people that I couldn’t understand them, and as my hearing loss progressed, I increasingly isolated myself–without really realizing what I was doing.

It can be hard for hearing friends and family members to adapt to progressive hearing loss. It can be hard to understand that what you heard yesterday is not the same as what you can hear today, that hearing voices isn’t the same thing as understanding words, and that hearing loss is not about just turning up the volume. When you’re in the middle of trying to understand and accept that yourself–well, sometimes those feelings of being a broken hearing person really got in the way of me asking for what I needed.

Once I finally accepted that I am deaf, things became easier for me in a lot of ways. I stopped feeling bad about it (well, most of the time), and started to work on asking for what I need. I am no longer afraid to ask for interpreters at doctors appointments, to remind my friends to look at me when they’re talking, or to hand a complete stranger a piece of paper and tell them to write down what they’re saying.  It may seem like an easy, obvious thing, but for me it’s a huge change.

I’ve been very lucky to have so many hearing friends that are supportive, and to have Deaf friends who are willing to work with my bumbling ASL skills.  My horrible dream has thankfully not come true.  I’ve realized that it’s not about where you are in the spectrum or how you identify, as long as YOU accept yourself, and surround yourself with people who are willing and able to support you in that.

 How have you come to accept  your identity? 

40 thoughts on “Somewhere Between Deaf and Hearing

  1. allthoughtswork

    Your description of your evolution into a new identity is so universal, it’s scary-good. As I was reading, I felt very keenly how neatly you could Insert Socially Inconvenient Identity Here.

    Pretty soon, it becomes not a tale of an individual’s challenges, but of a society’s shortcomings. In other words, the “problem” never was, nor ever will be, with the one who stands out. It’s with the ones who don’t walk over there and stand with him.

    _m/

  2. Lisa Danielson

    When I read your column, it really hit home for me. It was good to actually see my own experience in written form. I experienced everything that you wrote in almost exactly the same sequence. When I got my first set of hearing aids, I came home and I heard a noise in the living room that I had never heard before. My hair needs were not adjusted correctly either, so this noise was not very clear. I walked around the house for 3 hours trying to find the source this noise, to no avail. By the time my husband had returned home, I was in tears. I was so frustrated over this noise and since I had never heard it before I couldn’t even describe it to him. My husband, myself, and my four children searched for an additional 2 hours for the source of the noise. It was my daughter who actually figured out where the noise was coming from… It was the clock on the wall ticking. My husband and my children laughed, but I was crying. I was so overwhelmed by hearing noises and other sounds that I had never heard before,and I had a terrible headache from searching for the origin of the noises I was hearing for the first time. And even in the middle of my own family, I felt alone and isolated. I sat my children down and explain to them why their laughter hurt me. I tried to explain to them the loneliness that I felt, being caught being between two worlds… Hearing world and Deaf world, but not belonging to either one. I never had to have that conversation again for them, as my children completely understood me. They begin to learn sign language with me so that we can still communicate, while my husband refused to learn. My acceptance of losing my hearing actually brought me closer to my children. Thank you so much for this article, because now when I want to explain to someone I have just met how I feel about becoming deaf, I can just hand them a copy of your article!

  3. Deb

    Hi guys,

    I hope I’m responding in the right box. I’m referring to the “Somewhere Between Deaf and Hearing” article …(and any hard of hearing posts for that matter). I am 39 years old and profoundly deaf in one ear and partially deaf in the other. I wear hearing aids and I will be currently switching to cross hearing aids next month. I am currently involved in some stuff with hard of hearing groups and workshops/courses etc. I would like to mention that there is more support (and ways to meet other hard of hearing people) than you might think. Whether we have becoming suddenly deaf or hard of hearing over time, I think we all know the impact it has on our lives and that is why I would love to hear from as many of you as possible and for our groups to grow in numbers.

    Please contact me for any information on groups and courses etc.,.. or any advice or comments you might have on hard of hearing issues.

    Regards

    Deb (debs1080@yahoo.co.uk)

    1. adam

      AMEN! I think you have summed it up perfectly. I felt for the longest time that i was stuck between two worlds. I have since lost all of my hearing and now have two cochlear implants but so relate to this post. great job. I will be sharing on my facebook page.

  4. ash

    Thank you so much for writing this. I didn’t realize until this that hearing loss isn’t just about the volume. My mom has been going through this for a few years now, and we just try to talk louder, and louder, and louder until it’s like we are yelling at her. I actually got mad at her for not wearing her hearing aid about a week ago, and i really did yell at her for it.
    I know now that I am to blame for not working with her and after reading this article I feel so bad for getting upset with her (i did feel bad before, but didn’t know what to do). Now I need to be there for her and try and do everything I can to help her understand what I am saying to her.
    Thanks again for the article. I have confidence that this new way of seeing things will help my mother and I both.

  5. Laura Hartwell

    Thank you for writing this. You talk about the fear of isolation, just like I have been feeling which seems to be a common thread among those of us in the progressive hearing loss club. This new world I’ve been thrown into is a little scary. Right now I am still firmly in the hearing world, but I know as my hearing loss progresses, that firm grip will become more like a slippery slide into the seeming netherworld of being neither hearing nor Deaf, not fitting in either world. That’s what scares me. I’m a social person, I enjoy having friends, and enjoy the ease of an impromptu conversation with a stranger. I feel like I’m grieving a future loss already. Reading about others who are further along on the path helps a lot.

    1. Indi

      Laura,

      I understand completely that feeling! One thing I highly recommend is to start learning sign language *now*, and try to connect with other hoh and deaf individuals in your area. It helps ease the transition a bit. Also, try being really clear with your friends about what you’re going through – what you need, how communication might change as you progress, and even encourage them to learn sign language with you. If you contact your local vocational rehab office, they might have some really good resources for you as well.

      The biggest thing I’ve learned: hearing loss doesn’t have to be isolating.

      Good luck, and feel free to contact me if you want to talk more about it!

    1. Indi

      Justin, As long as you link back to my site and give me credit for the post, I have no problem with you sharing! I’ll check out your FB page as well. Good luck!

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  7. Chey

    I feel the same way sometimes. I have one fully functioning ear, while my left ear has a damaged eardrum. So sometimes I like to think of myself as half and half. And I can relate to the bumbling ASL. I just started learning recently, so my signing is positively crappy at the moment.

    1. Indi

      Have patience with yourself! It’s really hard when you’re just starting out, and it feels really awkward. (This is good advice for myself, too, I think. :)

  8. Barbara

    Indie
    I was born with unilateral deafness , at least I think so. My deafness was not discovered until I started Kindergarden as the school did hearing tests on all new students. My father used to punish me for ignoring him until they discovered the hearing loss. I am now 60 yrs old and find that I am having more trouble hearing. Also I recently had severe polyps removed from my larynx, and have a very hoarse voice. I may not get my voice back and wanted to ask how I might get assistance with learning ASL . My husband is also willing to learn so we’d still be able to communicate. Can you give me a place to start? we live in a small rural area in KY. thanks Barb

    1. Indi

      Barbara – Sorry it took me so long to get back to you! I would start by searching for resources for D/Hoh in your area. Perhaps try contacting the local Voc Rehab office? They are geared more towards helping people with employment, but the office here gave me some great ASL resources. Also, if there is a college near you, check to see if they have any ASL classes, or clubs. Sometimes local community centers will offer classes as well. Here are some links you might find helpful:

      Kentucky Voc Rehab Services
      Kentucky Commission of the Deaf and Hard of Hearing
      Kentucky Association of the Deaf

      I also have a list of some online sources that might help you get started, if you’re interested. LifePrint has a free online course, which gives you a good start on the basics.

      I’ll send you an email with this info as well. I hope it helps!

  9. James of Ascot Vale

    Mrs Winters, it’s not that he’s too proud to learn ASL, it’s that he doesn’t want to surrender completely. Try harder when you communicate, don’t go off on tangents, do unofficial signs as you talk (you can’t tell me you two don’t already do this) more often.

    I don’t want to put it all back on you, but he IS trying. The fact he has hearing aids shows that he is trying. They may actually give SOME clarity, but not enough and yes it is mostly just an increase in volume (imagine someone is speaking Turkish on TV and then increase the volume) so he just winds up miserable.

    Don’t get angry now… while it is certain that he does misunderstand you, I can tell you that when we DO hear what is said we file it away and cling onto it, as a reference point. He may well at times hear you, but you don’t file it away like he does (you’re normal) and so it can always look to you like he’s being unreasonable.

  10. Mrs. Winters

    I am the wife of a man with progressive deafness. The biggest challenge in our relationship with his hearing loss is that he accuses me of saying incorrect things rather than admit he can’t hear me. It’s caused so many fights. I care about him and his health but his attitude is killing our marriage. He has hearing aids but they don’t provide clarity just noise. He probably can hear about 60% of what is said. He is too proud to learn ASL.

  11. Tina

    Indi, signed up for your blog recently. With my progressive hearing loss, and indescribable self-pity party, I have read and loved all your posts eagerly. Todays post was what I needed. I am also trying the “last” of the hearing aids. “This is it” etc. And have hated them! But thanks to your post, I am taking a different approach to them! Lots if love to you, girl!

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  13. T

    You have me in tears. I have been struggling with this for at least 10 years. I can totally relate to your post and am desperately trying to find my way. No job, not sure where to look, or if I should. Social person, increasingly isolating myself. My husband is a complete doll and very supportive, but I feel so useless in our household – I never imagined I would not be contributing financially and feel like a burden. Thank you so much for giving voice to my feelings. Now any suggestions on how to move forward with grace and dignity??? I do not want to spiral into a permanent pity party 😉

    1. Indi

      I plan on writing a full post covering this very topic, and if you would like you can email me and I can give you a little more tailored resources. But for now, I say… first, allow yourself to grieve. The way you communicate, interact, and view yourself has changed drastically, and it’s perfectly okay to allow yourself time to grieve that. Second, think about your skills, what you enjoy doing, and see if you find the job answer in there. Most jobs can be easily adapted to hearing loss – the biggest challenge usually is just educating those you work with! Thirdly, find your community. Whether that’s supportive hearing friends, late deafened or hoh groups, or the Deaf community, I think it’s vital to find people who understand what you’re going through and can offer support.

      Do you have a voc rehab office near you? They’re a great resource, not only for job training/placement, but assistive devices, education, community resources. They’re wonderful.

      Please do email me with any questions you have, or if you want more specific resources. I wish you the best of luck, and I am glad you found me here!

  14. countrymom7

    This is soooo totally me. I tell people that I am no longer really in the hearing world, yet I am not completely in the Deaf world either. I am thankful for my friends in ALDA to help me feel like I belong somewhere.

  15. Amy Watson

    Love your blog! I will use this as one of links for my ASL students to check into. I’ve borrown your “10 things you should never say to a deaf person” as an handout and gave you credit for a well written article! I’ve been commented on most of these too and my daughter (who is laten deaf at age 8).. just in my last class, had an elder student asking me if “college was hard”. I said I am entering grad school this fall and It is no harder than for any hearing person.

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  18. Liisa, a Deaf from Finland

    I’m in very same situation, so gotta share this one since your text is very impressive but very true! :) The fact I want to mention is that communication is not only one’s responsibility, it’s also the another one’s. So if you don’t understand what the another is saying, isn’t your problem! The problem is rightly inside the communication between you, and you all must figure ways out to get the messages received well.

  19. Noelle Campbell

    I feel this way being a spouse of a deaf person, but hearing. Sometimes the Deaf Culture advocates will try to make you choose between the deaf and the hearing. I know it’s bogus because I’m also a half breed (half Mexican/half White) and I experienced similar culture disputes growing up. I hope it stays good for you. I’ve added you. I feel sympathy and empathy both. It is hard to be in between worlds. It is so hard, I feel like my husband and I created a world of our own. It has been really hard to find other people to turn to for advice and offer wisdom to, but I bet there are a lot of people out there like you. There is a blog I subscribe to “adventures of a deaf adult” http://deafadventures.wordpress.com/ maybe she can relate. I hope you find good connections. Good luck to you.

    1. Indi

      Thank you for your comment, and support. I know hearing spouses have their own challenges to face. As for the other blog – that’s a friend of mine :) Honestly, without her support and understanding over the last couple years, I wouldn’t be so comfortable right now with my Deaf identity. She’s been amazing. Thanks again for reading my blog!

      1. that Deaf Girl

        You have been amazing too! The transitions we go through, the mental switches, the pain, the excitement, it is a story worth sharing. Happy you have a place to do that, and one that has taken off!

    2. that Deaf Girl

      thank you Noelle for recommending my blog! Indi and I have been friends for a while now, but each time either of us writes… we do see a new perspective and something about the other we maybe haven’t seen before. Creating a world of your own sometimes is required… my partner and I seem to be doing the same thing.

  20. Marla

    You know I love you “broken” or not but always and forever just the way you are. Thank you for taking a couragious step in letting those of us without hearing loss know how difficult we often make it on you and others without intentionally doing so

  21. Henry Sanders

    I’ve shared this blog in my Facebook as you and I have a similarity of what we grew up with. Love this blog as it’s really touch me. Thanks! :-)

      1. terpstube

        Hey Indi!
        Your story is touching. I have shared it from my blog also. You have a good attitude and that will carry you a long way. I can relate so much to some of the things you say with the progressive loss I have. The online world is a better place now that you’re here. Find your nitch and go girl! :)

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