Facing adulthood with a hearing loss

…so, I’m 28 and I’ve just lost the hearing in my right ear. Up until this point, my only accommodation had been amplified handsets for the telephone. With lip reading and my hearing aid in my right ear, I felt like I heard really well. I still missed a lot on the TV (captioning wasn’t an option that I knew about at this time, back in the very early 90s) but I turned the volume up and managed pretty well.

There was a 2 week period while I waited for a new ear mold to be made for my left ear, and during that 2 weeks I really floundered. I actually wedged the ear mold for my right ear into my left ear and wore my hearing aid that way, for as long as I could stand it each day. I never missed a day of work and didn’t miss any social events scheduled for that time. (I especially remember going to a shower…wedding, baby?…for one of my cousins at that time, and how awful it was to try to talk to everyone when I could barely hear.) I was so, so depressed and terrified. My husband at the time (Dave is my second husband) was as supportive as he could be, but he was at a loss to console me. What freaked me out even more was his response when I asked if he would take sign language classes with me. I assumed that if I was going to lose my hearing I would have to know sign language, and none of the doctors could tell me if I would keep losing more hearing. So this was the next logical step to me. Except my (ex) husband told me he didn’t think he could learn. He pretty much told me that it would be too hard for him and he wouldn’t do it. I was absolutely distraught – it made me feel like eventually I would be all alone with no way to communicate with anyone and nobody around me who was willing to make the effort for me. My son was only 2-1/2 years old at the time (my daughter wasn’t even born yet) and I was so sad, thinking I might never hear his voice as he grew up and his voice became more mature.

Once my bi-CROS hearing aids came in, though, life pretty much went back to normal. I wore the hearing aid in my left ear and the “receiver” in my right ear. I actually felt like I heard better with the bi-CROS aids because they gave the illusion of hearing from both ears. My hearing didn’t get worse and eventually, as the months passed and I stopped worrying, things settled back into their usual routine. It had been horrifying but losing the hearing in my right ear was a manageable event. I never did take sign language classes and I was able to hear all the things I used to be able to hear…it was just quieter once I took my hearing aids out for the evening.

My then-husband and I split up in 1996, when Eric was 6 and Paige was 2. I had been a stay-at-home mom for the past 2 years so it was a big adjustment, finding full time work and being a single mom with a hearing loss. I was happy though, finding out that I could absolutely do this and not depend on anyone. Even with all the stress involved, it was a really empowering time in my life. The job I got, as an administrative assistant in the Human Resources department of a local company, was fun but involved a lot more phone work than I was comfortable with. In fact, I had to cover the switchboard quite often, and that was incredibly stressful. However, my boss made it clear that in order to take the job, I had to cover the switchboard…so I agreed to give it a try. I had an extra amplifier and managed to get by. The hardest times were when people with accents called in, and this happened a lot because the company was originally based in Germany so many of the callers were from Germany. I’ll admit that a few times I switched people to a random department after a few fruitless moments of trying to understand them…I figured that whomever I switched them over to could probably understand them better than I did and could redirect the call to the proper place. :-0

I started that job in early 1997 and things were going merrily along until September of that year. I managed to get an infection in my outer ear (probably from scratching it, due to the ear mold making my ear itchy) – my left ear, the one that still had hearing. It was the most painful, awful thing I’d ever experienced, and the first time I’d ever had an infection like this. I was running a high fever and the pain in my ear was indescribable. I went to a walk-in clinic and they made it worse by forcing water into my ear canal to try to clean out ear wax (which they were never able to remove, by the way). I had to make an appointment at the Chicago Otology Group (now called the Ear Institute of Chicago), the people who had treated my sudden hearing loss back in 1993. They placed cotton soaked in antibiotics deep into my ear, prescribed drops and painkillers, and used a vacuum “thingy” to clean out the pus and wax in my ear. Once I started seeing them, the infection finally began to clear up. However, it was at least a week or more before I could wear my hearing aid.

During this period, I was completely deaf. I couldn’t hear the alarm to wake up in the morning, I couldn’t hear my kids, and I certainly couldn’t go to work and do my job. My ex husband stepped in and helped me out by making the doctor appointments and communicating with the doctor’s office – he arranged for me to get a vibrating alarm clock with a bed shaker, something I never knew existed before. My parents took my kids when I was in so much pain that I was pretty much unable to do anything but take painkillers and cry. It was really frightening and humbling to realize I wasn’t as self-sufficient as I thought I was.

Once things stabilized a bit, I realized it was just ridiculous…I needed a support group. I needed to acknowledge how much my hearing loss impacted my life, and I wanted to talk to other people who knew what it was like to live with hearing loss. The vibrating alarm clock was a total eye-opener for me and I wondered what other tools and accommodations were available to me that I had no idea existed. I was done trying to pretend I was exactly like everyone else. I don’t think a hearing loss means there’s something wrong with me, but geez, I obviously need some help that most people don’t. And I really don’t think there’s anything wrong in admitting that. For me, anyway, it’s taken a huge weight off my shoulders and relieved a lot of stress. These accommodations make my life so much easier, and I no longer want to pretend I don’t need them!

The first thing I did was turn to the internet. I’d been online since 1992 or 1993 or so, and had found support groups for other things I was interested in so I figured there must be groups out there for people with hearing loss.

I joined 2 or 3 mailing lists and ended up sticking with one, the Say What Club. A couple of the lists were actually newsgroups. This was the first time I was exposed to the difference between deaf, culturally Deaf, hard of hearing and late-deafened adults. The way I always thought of it (and still do), if someone says they are deaf then it means they can’t hear anything. If they can hear something, even a little bit, then they are hard of hearing. I didn’t know anything at all about Deaf Culture. Well, in these mailing lists I came across all kinds of people that identified themselves as deaf and then would mention being able to hear, albeit not very well. I thought, “Hmmm…maybe I’m identifying myself wrong. I should tell people that I’m deaf.” It’s easier to say, after all…less words, less stumbling over “hearing impaired” or “hard of hearing”. (I use both terms equally, to be honest – I know some people hate the word ‘impaired’ but it always described my hearing, which was definitely impaired, so I didn’t have a problem with it.)

I noticed a big change in people if I told them I was deaf. They’d look really nervous, and if I was with someone else, they would turn to that person and start talking. Everyone assumed that I could not hear at all, and that they couldn’t communicate with me since they didn’t know sign language. (It was also assumed that if I was deaf, then I knew sign language…like it’s something you learn automatically, by osmosis, as soon as your hearing goes.)

So I went back to identifying myself as HOH, and stopped assuming that if someone said they were deaf that it meant they couldn’t hear at all. This still puzzles me sometimes though. Now I tend to identify myself as ‘profoundly deaf’, meaning my loss is at a profound level and I can’t hear anything. I mean, I don’t hear jet engines, I don’t hear ANY loud noise at all. But I keep running across people who say they have a profound loss and then mention things that they can hear or that they hear certain things with a strong hearing aid. It blows my mind. Even with the strongest hearing aids they make, I don’t hear anything. How is it that these other people with a profound hearing loss can hear things? I mentioned this to Dave and he reminded me that there are different frequencies involved in hearing loss, which I’d forgotten about. I guess what I’m trying to say, though, is it’s really hard to convey, even to someone who also has a hearing loss, what degree of loss you have with just a word or two. All of the losses are so unique!

Anyway, back to the lists. I joined SWC and told everyone my story of my recent ear infection, being temporarily deaf and how it scared me. I mentioned wanting to learn sign language on my own, and just wanting to connect with people who understand. This list really opened my eyes and introduced me to some wonderful people. I didn’t feel alone anymore. I realized how many things I do…the way I react in certain situations, things I try to avoid, etc. were due to being HOH. It was wonderful to share with other people and find out I wasn’t the only one doing these things, like paying with a $20 bill at a drive-through because you have NO idea what the total was but you know a $20 will definitely cover it. 🙂

One of the first people to welcome me to the list was Dave. He sent me a huge box of sign language books and videos, since he used to teach a casual sign language class years back, before he ever lost his hearing (ironically). As 1997 came to a close, we became better friends and I really enjoyed emailing him. Originally I thought he was much, much older than me because he always called me “kid” and made references to his advancing age. I figured he was in his 60s or so. As 1998 rolled in, I finally saw a picture of him and realized he was in his 40s (I was in my 30s) and hey…he’s cute!

We met in person in March of 1998 and started a long-distance relationship. It took a while to get off the ground – when he started to become interested in me (before we met in person), I told him not to expect too much because internet relationships are hard to convert into “real life” relationships. You build this person up in your mind and then when you meet them in person, it rarely compares favorably to the person you had imagined. Even before that, originally Dave wasn’t interested in starting any relationships because he’d survived leukemia and a bone marrow transplant (which is how he lost his hearing) and felt like he couldn’t guarantee he’d be around long enough to see a relationship through. He told me this back when we were just buddies and I told him that was nuts…if he met the right person, he should go for it. So what if he might only be around for another couple of years…why not make them great years with someone you love? None of us has any guarantee as to how long we’ll be here on earth, anyway!

I guess I convinced him pretty well because he turned out to be my “right person” and I was his. I’ll go more into detail about our story in a future post, but to make a long story short, we got married in 2002 and celebrated 10 years together earlier this year. Every single day, and I mean this in all seriousness, I wake up and feel like I’ve been given a gift to see him lying next to me. I enjoy every second of every day with him, and we are together 24/7 (literally) so that’s a lot of time! In all these years I’ve never felt like I needed a break or didn’t enjoy my time with Dave. He’s my best friend and I’m still amazed that we were lucky enough to find each other!

Once I met other people with varying degrees of hearing loss, I finally felt at home with myself. I have absolutely no problem letting somebody know I can’t hear them – it’s not always the easiest thing to bring up, and usually I don’t mention it in quick, casual encounters. But if I miss something, or mis-hear something, I just tell the person I didn’t hear them. Now it’s different, since I don’t hear at all, but in the past I’d move my hair away from my ears to show them my hearing aids. I’d get a lot of comments like, “I had no idea – you don’t sound like you have a hearing loss!” I’m still trying to be very careful with my enunciation now that I can’t hear myself talk. My family’s told me that I’m talking louder now but other than that, I still sound the same.

When I started researching CI’s, my first instinct was to get a color that blends in with my hair. My mom was quick to tell me that I can hide the CI’s with my hair and nobody will ever see. But you know, I think I’m more apt to let the headpiece show. It’s not something I want to hide, and I definitely wouldn’t be ashamed of it. What a difference in attitude!

Looking back, I really wonder what kind of person I’d be now if I’d gotten more help when I was a child. And I don’t mean that I blame my parents for anything, because I don’t think I turned out all that bad. 🙂  I just mean, maybe I would have been less fearful and shy. I hated new situations and always wanted to know exactly what was going to happen, because I didn’t feel like I could ask for help if I needed it. I wonder if I would have tried more things and been more confident.

I’m not sure what type of ‘help’ I’m even talking about, or if I just mean acknowledging that I was struggling and needed help hearing/understanding in certain situations. I think I’ve been dwelling on this after reading all the stories of children with hearing loss lately. Things have come such a long, long way since the early 60’s and it’s really great seeing all the options available to parents and their children now. I think it’s wonderful that no matter what route they choose, these parents and kids can have a support group and not feel so alone.

I was trying to come up with a clever way to end this post but I can’t think of anything, other than that I’m glad I’m not alone. It’s not eloquent, but it’s true.

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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 May 30, 2008, in Emotions & Attitude, Observations and tagged , . Bookmark the permalink. 7 Comments.

  1. Thank you for sharing this with us. It helps us understand those lateness Deaf people a little better. We do not interact much, tho. Don’t know why.

    Thanks again.

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  2. Wendi–You and I have very similar stories. I found myself nodding my head all the way thru! While I still hear many sounds, I tell people I’m deaf because I don’t hear the **important** sounds of speech clearly enough with my hearing aids to understand anything without lip-reading and/or ASL. If I’m deaf to speech, I’m deaf, and I don’t mind telling people.

    I didn’t realize you were in the SayWhatClub! How funny. You must be on different list from me. I think there are four or five now. Are you going to the Convention in Philly? I plan to be there. Rooming with Robyn from NZ. It’ll be so much fun and it would be great to see you there!

    Hugs,
    Kim

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  3. Curious Eyes

    Wendi, thank you for sharing your story. I enjoyed reading it and getting to know you better this way. Keep on posting! I’ve had a progressive hearing loss all my life, learned sign language later, and now have a cochlear implant. I consider myself bilingual and bicultural. I don’t wear the implant all the time, but lately I’ve found myself putting it on in the car before going into a store when I know I will have to talk to a salesperson. Now that I have the extra information from hearing speech sounds, the implant makes oral communication sooo much easier. i still have to lipread them, but with sound input, I’m a lot less frustrated or irritated because I can understand them better. Even little things like being able to hear the cashier ask for ID when I’m not looking at her eases the interaction. I feel quite at a loss when I cannot hear anyone, now.

    I could also relate to the part about how having a hearing loss changes how you relate to the world. But instead of it making me reluctant to try new things, I kind of went in the opposite direction — it made me more of a risk-taker because I wanted to prove that being deaf would not hold me back from anything. and I mean ANYthing! My parents will never know what I got up to during my teenage years (chuckle).

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  4. ilhandsandvoices

    Wendi, thanks for sharing your story. I know what you mean about wondering if it would have been different if you had gotten more help. This is one of the reasons I try to have an open attitude with my kids and instill pride in them, but it isn’t always an easy thing to do. My kids seem to be more assertive about their communication needs much more than I was when growing up. But I still see other kids, especially HH kids, with that “terror” look in their eyes when it comes to social situations in groups and I realize we still have much more work to do to erase stigmas and get everyone communicating.

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  5. I often wonder if I got the help that my parents insisted (incorporating sign language into my schooling) if the transition of losing my hearing completely in one fell swoop would have been easier to cope with. I was emotionally distraught, extremely depressed… I wasn’t me anymore. In fact, I haven’t been the same person since that day. I’ve definitely grown from that day and it seems liike you are too dear…

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  6. I know what you mean about how to label yourself: HOH, deaf, etc. I have always said I was hard-of-hearing, but now that I don’t really hear much of anything out of my left ear and only hear with 32% speech comprehension in the other, I have been calling myself “deaf,” Without any hearing aids on at all, I don’t hear anything. I might hear a dull sound, but nothing clear.

    Thank you for sharing. I was able to relate to a lot of what you said. I am so much more open about my hearing problems than I used to be. I am not afraid to tell people, “Uh, I can’t hear you. I’m deaf.” The other day, my daughter had a neighborhood kid over to play and he showed me his new cellphone. He wanted me to listen to his ringtone. I told him that I couldn’t hear it and that I was deaf.

    I do know sign language, but not ASL. I need to work on that. It’s the linguistics that is my problem. I remember a Deaf friend saying “towel paper” when she wanted paper towel. I need to get a good book on Deaf Linguistics (sp?).

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  7. Hi Wendi
    thanks for sharing ur story .My brother ‘s daughter who is only 2yrs old has been diagnosed with the problem .she is hard of hearing in both ears but she responds to big sounds .As a result of this she has nt started talking also .do u think hearing aids can help.actually we r worried sick abt this.Hpe u will reply .
    Regards
    Simi

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