MY SELF WANTS TO GO OUT Guest post

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One of my favourite hearing loss blogs, well favourite blog of any type,  is  Not Quite Like Beethoven. It’s written in German and I use the online translators to read it -with varying success- but it is worth the effort.

NQLB is contemplating cochlear implant surgery. A process that of necessity requires great introspection and analysis of the quality of life that you have with your current hearing. You need to reflect on  what you can and can’t do because of hearing loss and of course what you may or may not be able to do if implanted. It’s a difficult, emotionally draining process- as evidenced by my first posts on this blog. You have to do it so that you can move forward and embrace cyborgdom.

This is what NQLB says.

Over the last 15 years, I have gone from hard of hearing to profoundly deaf. Although I wear hearing aids, many people including my friends, are often stupefied when I tell them what my world is like. But you seem to cope so well, they say. Well, it’s not as if I had an LED on my forehead that turns from green to red whenever I don’t understand. But perhaps that would help. You would barely notice it being green at all.

Are there things I would like to do but can’t now because of my hearing? Well, let me count the ways: I cannot use the phone. I cannot watch TV or go to the movies unless there are subtitles, which, in Germany, rarely happens. I cannot talk in the car. I cannot go to a café, pub or restaurant with anyone. I cannot participate in a group conversation. When I ring anybody’s bell I cannot understand them on the intercom, so if they let me know how to find their apartment in this huge complex, I get lost anyway. I cannot talk to people I run into in the streets or in shops. I cannot join in a conversation after a lecture, a movie, or a play, because first of all I often do not understand much of the lecture/movie/play so I cannot join in the conversation on the most natural topic afterwards and I usually cannot even understand what the others say about it because it takes place in the hallway, the street or a pub and they talk to each other instead of to me. I cannot understand any announcements at train stations or airports, in buses or trains (except on that special occasion once a year). I cannot talk to people who ride the subway with me or who happen to sit by my side on long train rides. If it’s not on the menu, I cannot understand a restaurant’s specials that the waiter tells me about. On planes, if I haven’t ordered in advance I usually get a surprise menu, because I cannot understand a word the flight attendant says over the roar of the engines. I cannot moderate group discussions, and neither can I teach a seminar as that involves dialogue, answer questions after a presentation, or talk to people in the lobby. I love dinners and parties but any time there are more than 3 people it is only a matter of time until I start feeling lonely even among friends.

I am the perpetual bystander. Not a good way to find my way and happiness in work and love.

Basically, in order to talk to me, everybody has to meet me at home. Or at their homes. And stay there. The two (and never more) of us alone. If you think that’s great then think again. It’s not if you have no alternative. Moreover, when trying to make new friends, for me there’s no taking people to cafés, bars or restaurants, chatting in a relaxed atmosphere.

You know, my self is sick of being walled in like that.

I, Mog, wanted to add photos to NQLB’s guest post that have a German theme, so here are my German inlaws. The three girls are the only ones still alive. One is my mother in law.

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21 responses »

  1. Wow – that is such a wake-up call to us hearing folks ! Poignant indeed. As you may recall, I grew up with a brother who was hard of hearing – he would explain some of the above, and I would anticipate and guess other elements – but the eloquence here, even via an online translator, is breath-taking.

    Thank you for sharing – both of you.

  2. My pleasure (even though it is, of course, not exactly that). Glad you like it.

    I have talked and explained a lot about being deaf/hoh to my normally hearing friends. But somehow, in talk, and no matter how bluntly I put it, it seems to never come across as piercingly as in writing. Maybe it’s something about lists, or perhaps there is something contradictory about talking about problems of oral communication.

    • I wonder if people are embarrassed or ashamed when they listen to our experiences and somehow blot out what we are saying. When it’s written down then can read, digest and reread to understand fully.

      My family, good friends and new cyber friends read my blog. There are several people that I had hoped would be interested enough in me and my life to read it but they didn’t. Having a disability sorts out the wheat from the chaff in friends.

      • >I wonder if people are embarrassed or ashamed
        >when they listen to our experiences and somehow
        >blot out what we are saying.

        And how many times have I contributed to that when after such a narration an awkward pause ensued — and I made a little joke of myself, or a smile indicating that it’s not that bad, some gesture that let them off the hook. And myself, too!

  3. A most enlightening post. As I’ve said before, I’ve learned so much from your blog, not simply about physical hearing loss, but about how this impacts on so much of life and personality. I’ve learned to appreciate much in my life, while also examining my attitudes to my abilities, my reactions to people and situations.

    I am also in awe of how technology has changed your life experience.

    • Rob, If it wasn’t for my hearing loss we may never have met and become, I hope, good friends. We would have missed out on your support when I went for surgery. Thank you to both of you for looking after us and especially for looking after MLM when I was in hospital. I would have been worried about him alone in the city.

  4. Pingback: Englischer Ausflug: Wie sich Ertaubung anfühlt « Not quite like Beethoven

  5. Thank you for sharing this Mog and NQLB.

    Your post sure raised some memories for me. When I did try to share what it was like to be HOH, I often encountered body language indicating such discomfort in the person/people I was talking to that I would become uncomfortable and change the subject. In my mind I would be vowing to never do that again. Eventually I told only when I had to and shared only when asked.

    Blogging does create a barrier from the visible reactions. Even better, blogging makes it possible for people with things in common to find and encourage each other.

    Mog, thanks for introducing NQLB. NQLB, nice to meet you. Great post!

    • Thanks Glenice. Body language tell us so much, and I am certain that people with hearing loss are better at reading it than hearing. I wonder if I will start to see less as I can hear more? I hope not.

  6. So well put. The ‘I start feeling lonely even among friends’ struck a chord – its not a nice feeling but so true especially in group situations. I would love to show this to my hearing friends, in the hope that they might begin to understand….

    • Perhaps you can Fran. Do they read your blog? If so then make a small post and link to it.

      It is easier for people to read these things than to hear them in person. Easier for us to say them too.

  7. I read your blog, beethoven and understand some of the things you are going thru. What percent of German speech can be understood by lipreading? I can understand about 80% of English that way. I respect your choice if you want CI. I am getting stem cells myself instead of CI and have posted about this in my blog.

  8. “”He wrote that in English for us.”” Ah – lack of online translator (even though they can be pretty good). That’s why it was so eloguent then! Thanks NQLB.

    You wonder if people are embarrassed or ashamed? I think you can put it down to ignorance and awkwardness. Many people react “badly” when they either haven’t faced a situation before, ie, being aware of good etiquette for deafened people, or because they literally don’t know what to say. Lots of people are not accomplished or empathetic enough to be gracious and understanding – in a million different kind of situations. We’re a funny old breed, us humans !

  9. Very eloquent, NQLB. I attended a pizza party for members of a hearing loss support group last weekend. It was so great to be with people who understand hearing loss, who face you when they speak, who add sign or gestures to help express their point, who are willing to repeat/restate as much as needed. I hope you can find a similar group where you live, NQLB. It really helps combat the loneliness and isolation.

  10. Thanks, y’all!

    Glenice, that is the social magic of blogging.

    Scotsfran, you’re welcome to show it around, as Mog said.

    Deafdude, I would say about 40%. Like in English, it depends very much on whether you are otherwise in the loop or not and how important spoken language is in that moment. Think a lecture vs. chitchat w/friends.

    frostbite, even I don’t know what to say many many times when someone tells me s.th bad. I can just hope my empathy comes across through other channels

    speak up, yeah, I noticed that. I’m sure I will…

    • I approved this comment as it’s a link I was going to add anyway. I do think that to add this without comment is at best spam and at worst rude. What was your purpose in adding it to my blog? Do you think I am anti stem cell research and treatment? Maybe you are anti CIs. Whatever it is I find your actions bloody rude.

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