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Progressive Hearing Loss

Progressive hearing loss creates big dips in hearing.  Other times, it chips away at hearing little by little.  Either way, it means constant adjusting to hearing loss. Once I get used to a certain level of hearing loss, I lose more and wind up readjusting again…and again. With each drop, certain coping strategies I used previously were no longer effective. The same for technology I bought too.

The first coping strategy I learned all on my own was faking it or bluffing. I pretended to hear when I couldn’t understand a word the other person said, and I feared being a nuisance among the hearing. If I had to ask for repeats too often, I bluffed to fit in. I looked at people’s face for clues.  Were they serious?  Was there a light in their eye or a smile to show humor? Were they amazed at something? Then, I judged their tone in the same way: serious, light, harsh?

Often, I put forth one of my stock answers: “really” or “wow” using the appropriate tone. Sometimes, I used the deaf nod encouraging them to go on. The only time I needed to ask for repeats was when people asked me a question. I might try answering it with a simple yes or no but when their eyebrows raised I knew I answered wrong so I backed up and asked for a repeat. Very few people knew I had a hearing loss, because I had because I compensated so well.  Until I lost more hearing.

I lost the ability to judge tone and guessed wrong more often, massacring conversations by coming up with off the wall answers. I looked like a totally idiot instead of someone who couldn’t hear. Learning to be upfront took bravery but it didn’t take long to get over my fear since most people were willing to repeat or help me out. Bluffing is a hard habit to break and even 15 years later, I fall back on it unconsciously when I’m over tired or stressed out.

Things were all right for a few years, telling people I was hard of hearing. They spoke up, I heard and answered, until I lost more hearing. Volume alone no longer worked, and all I heard as they looked down or talked into windows was something similar to the Charlie Brown adult voices.

Now, I needed people to face me so I could use what little lip reading skills I have. I needed all I the clues I could get. Instead of telling people I was hard of hearing, I changed it to “half deaf.” Deaf grabs their attention and they look up to talk to me. Deaf equals lip reading. I had a higher chance of understanding what they said if they looked directly at me and though I’m no ace at lip reading, every little bit helps. It’s a skill I picked up without knowing it as I lost hearing.

Some years later, my hearing took another turn south and I had to re-adapt to social situations. I found myself sinking in rough seas of noise. I relied on lip reading more than ever and since I’m not the best, I missed a good portion of every conversation. It took a couple of meltdowns before I realized noise rendered me deaf. Now part of my getting ready for events isn’t just about what I’m going to wear, I have to make sure I leave in plenty of time to talk to presenters about my FM system and how it works. I also need to claim a seat up front so see the speaker who hopefully doesn’t walk around much.

Progressive hearing loss also means a series of steps down the ladder in phone communication. My hearing loss showed up first on the phone because there are no visual clues which I didn’t know I already depended on. My second pair of hearing aids had a t-coil switch. With practice, I figured out where to place the handset on my hearing aids but once I got that down, I heard on the phone fine as long as the background noise wasn’t too extreme on either end.

There came a day when t-coils where no longer enough. With encouragement from SWC friends online, I contacted my phone company for a volume control phone. The phone they sent me worked great because of the amount of volume I could get. (My family had to adapt to this as well learning to check the volume before answering.) Since I hear voices differently, I constantly played with the volume. For most women, I had to push the volume to max and for men I lowered it though there were exceptions. Some women have strong voices blowing me away making me scramble to turn the volume down and a few men I could barely hear so cranked the volume up. Between these two devices, I got by for several years with different pairs of hearing aids.

Then neither my hearing aids with their t-coil or my volume phone was enough so I started to hand the phone to others when I couldn’t understand the person on the other end. I worked with a lot of good people who helped me, taking over the calls without complaining. At that time, the other only other option would have been a TTY which wasn’t exactly what I needed either.

Relay services on the web in conjunction with my cell phone made phone calls easier again but it wasn’t a viable option at work. At home, it took away spontaneity. I had to plan calls. I had to leave messages with people telling them text me or to go ahead and call and leave a clear message, I would call back via relay. Some businesses never bothered calling back.

Trying out all technology available, I bought a uDirect (similar to an iCom) to work with my cell phone. I hear decently enough on it to pick up about half of what’s said. Half is easier to puzzle out especially if I know what they are calling for. As soon as I get a name, I enter it into my cell phone so when they call again, I don’t have to puzzle out just who is calling. Again, there’s no spontaneity. I wear my uDirect at work, the salon, to accept calls but if I’m not at work and my phone rings, I can’t scramble fast enough to put it all together to take the call.

Other times, my uDirect battery dies and the phone becomes useless unless someone texts. Wouldn’t it be nice if all the hearing world adjusted to my needs and texted me only? Someday that might just happen because I’m sure at some point I’ll lose the ability to talk on the phone at all. I haven’t lost the phone completely yet, but that is coming I’ll have to adjust to caption phones only.

While I still have some ability, for a long time I lost going to the movies. I grew up going to the movies. I loved Sinbad and the Eye of the Tiger, Star Wars, and Disney movies like The Apple Dumpling Gang. The movie industry made money from me until my hearing loss interfered. I started being choosy about which movies I saw because too often I missed the punchline or key words in dialog. It’s irritated me when everyone laughed and I have no idea what was said.

Because of SWC, I found out what an ALD (assistive listening device) symbol looked like and when I saw the sign in the ticket window at our new theater, I asked for one. They had infra-red headphones, with big padded ears and volume control and they worked great for me! I didn’t like the conspicuous little red dot shining like a beacon behind my head but I got over it. That year I saw every movie up for an academy award.


A few years later I moved and the theaters in my new city didn’t have the nice big padded earphones. They had the little headphones that sat on top of the ear canal. One theater had one-sided headphones, like pick my best or worst ear??? They didn’t help the tiniest bit and I missed dialog, plot and jokes. So, I gave up going to the movies all together.

I missed going to the movies and so did my family. I tried keeping track and waiting for movies to come out on DVD but soon I lost interest. It wasn’t the same as seeing it on the big screen. I lost track of actors and actresses. Ten years went by before CaptiViewSony caption glasses and open captioned showings came about letting me back into the movies again. The funny thing is, I got so used to not going to the movies that I forget the option was there again. Slowly, I’m getting around to movies again and I love it.

We aren’t the only ones to adapt, our family learns to change with our hearing too. They can’t talk from other rooms and need to face us when talking. Since phone calls are often too challenging, they make calls for us, and must text instead of calling. If we have a better ear, they must learn to be on one side of us so we can hear them better.  Socializing isn’t easy, because they may feel the need to help us out at large events and even small gatherings.  Even though they don’t need them they leave the captions on the television all the time. They let us know when the tea kettle is whistling and when we left the water running. Maybe they learn a little sign language along with us. Hopefully they do all this with patience.

Lots of emotions accompany each change too. The whole grieving process can be applied; denial, depression, anger and frustration trying to figure out how to make things work again. I see my partner’s helplessness as I break down, anger when things don’t go as planned because I can’t hear and how much he missed movies too. It doesn’t only affect the one with hearing loss.

The one sure thing in life is change and my hearing will do that. Someday I won’t have the phone at all except for email and texting and I might not be able to understand the person in front of me. First I’ll throw a fit and then I’ll do what I gotta do. It’s not the end of the world, just another way of doing things, again.

0 thoughts on “Progressive Hearing Loss”

  1. This story is so familiar to me and it made me so sad. I remember going to a workshop years ago and seeing a psychiatrist speak about the loss of hearing, how it is really a loss of so many things– not just hearing. It is the loss of being able to talk on the phone, the loss of being able to go to just any old movie, the loss of being able to sit in a noisy restaurant, the loss of being able to go to parties and understand people, the loss of being able to be late to events without stressing over whether you will hear, the loss of being able to hear in church. The list is endless. It is a loss of “friends” who don’t understand you’re really not faking it– and I put that in quotes because it’s really the understanding that some of your friends were never true friends. It’s the loss of dreams and sometimes the loss of a career. Sometimes you lose a husband or wife. The grieving is cyclical when it’s a progressive loss because it never really ends. Each time you get used to the new “low” you lose more. And people don’t get that. They don’t get why you can’t just move on and be that fun-lovin girl you used to be. Being depressed is a normal reaction to any loss of this magnitude. So in a way, there’s even a loss of your personality. It’s just HUGE. This post touched me in the deepest way.

    I think that’s why connecting with other late-deafened people has been so important to me, not just for the practical information– which is helpful– but also because of our shared experiences. (((HUGS)))

  2. Progressive hearing loss is a progressive loss of chunks of life. The new low, yes that’s what it is. I hit a low and have to figure out just how to pull myself out again. It gets tiring.
    Finding others with hearing loss was a ‘high.’ I learned so much from them. Because of them: their inspiration, sharing what works, the support and letting me grieve, I can usually pick myself up a little faster and carry on.
    Thank you for your comment. I’m glad to hear your take on it. I’m glad we can share. {{{hugs}}} back to you

  3. Thank you for posting these insights into your journey! I just wrote a blog on the topic of grieving your hearing loss which I think you mapped out and expressed so well. More applicable though is my recent post on the 10 Commandments the Hearing Impaired Wish You Knew ( I think it is a great list if you want to share it with family and friends. They need to be educated in the same way that you had to educate yourself, and sometimes a quick list is a good place to start :)

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