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Coming out of the Closet - As Hearing Impaired - robinbailey
Coming out of the Closet - As Hearing Impaired
For ten years I've tried to keep a secret. That secret has affected my life, my career, my relationships, almost every aspect of who I am. That secret has caused me embarrassment. It's caused me anger. It's caused me to retreat from many of the things I used to enjoy so much. I've worked hard to keep that secret. I've learned every trick in the book to hide and conceal it. But no more.

I am hearing impaired. Ten years ago, the radical chemo-therapy that saved my life from cancer seriously damaged my hearing. At the time, they warned me that the drugs might leave me totally deaf, but I was lucky and didn't lose it all. However, I lost 72% of the hearing in my right ear, and almost 50$ in my left ear with major loss in the high frequency ranges and in the low ranges. I tried to conceal the loss. I learned to read lips pretty well and learned to read body language. I relied a lot on Diana and on Ron to "translate" for me. A select few of my friends knew and a lot of others suspected.

Along the way, I had several audiology tests and sought help with aids, but the technology just wasn't there to compensate for my problem. And I was embarrassed and vain, anyway. Hearing aids were for old people. I kept trying to hide my loss. And the easiest way to do that was to retreat. I stood in corners at parties; I stopped doing book signings; I cut my convention attendance way back. I gave up music and concert performances. I struggled to hear flight directives over the radio and feared the result.

When I taught for the first time two years ago, it was a struggle. The Longview college staff was very supportive, and for some weird reason I opened up to those students and explained the situation to them. They were great. But I didn't teach again for two years. When I went back to teaching in September, I nearly resigned a few weeks into it. My hearing just seemed too great of an obstacle.

Instead, I began investigating hearing aid technology again. And I got into a research program. The result has been remarkable. Not absolutely perfect - but remarkable. I can hear table conversation again. I can hear my kittens purr and meow.

I'd like to write more, but I have to hurry out of here. I'm catching a movie with Ron, and I won't have to lean over and ask, "What did he say?" But if anyone wants to read it, I've posted some of the entries from a journal I had to keep for researchers. And I look forward to seeing a lot of you face to face soon. And those tiny little wires in my ears will not be earrings.


Hearing Aids Journal #1

Friday, November 5: Had to take the left hearing aid in to the shop. Turned out that wax was already stopping up the receiver. It didn't take but a moment to fix that. It seemed fine. Then, when I got home, it began to squeal when I turned my head in the bathroom. I thought it happened most often near the metal sink faucet.

It's not just the bathroom sink, however. My left hearing aid squealed in the car all the way out to Ron's. Car door? I don't know. I wondered if it might be the metal on my leather jacket, but then there's not that much metal around the collar, and I'm NOT giving up my leather jackets.

It's been squealing a lot here inside the house. No leather jacket on now. If I wave my hand near it, it squeals. I don't have a ring on that hand. Ron's hand causes the same squeal. When I leaned back in his office chair a moment ago, it squeals. The chair is some kind of metal wrapped in fabric. The squeal is loud enough that he can hear it. His cats jumped back, too.

For now, I've still got the hearing aid in. Don't know yet what's setting it off, but THAT will have to be fixed.


Hearing Aids Journal #2 -- Saturday, November 6:

The left hearing aid continues occasionally to squeal, in Ron's bathroom.

We saw a movie last night with both hearing aids in. That was a somewhat amazing experience. At first, the sound seemed much too loud. However, for once, Ron was asking me, "What did they say?" and I was providing the answers, filling in the gaps.

Later, we stopped at a bar on the way home. The loud music and conversations were overwhelming. Before we'd finished our drinks, I told Ron I needed to leave.


Hearing Aids Journal #3 -- Saturday, November 6:

Sitting here calmly on the couch. My left hearing aid continues to squeal without any apparent reason. It's not loud and sharp here; more like an occasional high-pitched tone. It's as if someone were giving me another hearing test. Here's a tone, there's a tone....


Hearing Aids Journal #4 -- Sunday, November 7

The squeal is about to drive me nuts. I can't determine a cause for it. At first, I thought it might be metal, but that doesn't seem to be the specific case. Moving my hand anywhere near it, even to scratch my head, sets it off.

The ability to hear again is amazing. Sometimes, it's almost too much of a good thing. I hear my ankle and knee pop, and it's as clear as a gun shot. Crowds are somewhat overwhelming. All noises seem to have equal value. At dinner tonight, the rattle of dishes and the clank of glasses, along with the noise of music and conversation, really got to me. I took several walks in the quieter lobby and eventually took the hearing aids out for a while.

However, when I take the hearing aids out, it's like having my head shoved into a bucket of water. The difference is marked and a bit scary. I knew my hearing was bad, but the moment I took the aids out I couldn't distinguish conversation at the table anymore. It was like I'd placed myself in an isolation tank.

I think, based on experience so far, that these hearing aids are going to work best for me in low-noise situations. I can hear the television at home perfectly. I could hear the movie last night perfectly. I can hear one-on-one conversations. But in large groups or crowds, all the background noises also feel magnified. Its probably too early to make that determination. It will be interesting to see how things go at the convention this coming weekend.

I'm perhaps too conscious of the wires in my ears. I know it's hard for anybody else to see them, but I feel like I'm wearing Spock-ears in public. Vanity? Of course.


Hearing Aids Journal #5 -- Sunday, November 7

This is a report on the hearing aids' compatibility with my airplane headsets. The report isn't good, and I suspect that, having flown for the better part of two hours today, I won't wear the aids while wearing the headset.

The left aid began squealing the moment I put the headseet on. It was unbearable, so I removed it before take-off. The right aid does not squeal, and conversation between Ron and me and the cockpit is clear. However, any radio contact with ground control or with other aircraft always involves a small amount of static. With the hearing aid in place, that static seems to be given equal value with the incoming voice, making the speaker hard to distinguish. On the return leg from Paola to New Century Air, I removed the right hearing aid as well.

I suspect that I can manage well enough in the plane cockpit just by manipulating the radio control and volume and not wear the aids in-flight.

I did put them back on as soon as I entered the FBO, and I'm wearing them now. I can hear the man and woman in the office clearly. Unfortunately, I can hear their obnoxious three-year old clearly, too. I've successfully made the transition to "curmudgeon."

This is a report on the hearing aids' compatibility with my airplane headsets. The report isn't good, and I suspect that, having flown for the better part of two hours today, I won't wear the aids while wearing the headset.

The left aid began squealing the moment I put the headseet on. It was unbearable, so I removed it before take-off. The right aid does not squeal, and conversation between Ron and me and the cockpit is clear. However, any radio contact with ground control or with other aircraft always involves a small amount of static. With the hearing aid in place, that static seems to be given equal value with the incoming voice, making the speaker hard to distinguish. On the return leg from Paola to New Century Air, I removed the right hearing aid as well.

I suspect that I can manage well enough in the plane cockpit just by manipulating the radio control and volume and not wear the aids in-flight.

I did put them back on as soon as I entered the FBO, and I'm wearing them now. I can hear the man and woman in the office clearly. Unfortunately, I can hear their obnoxious three-year old clearly, too. I've successfully made the transition to "curmudgeon."


Hearing Aids Journal #6 -- Sunday, November 7
My car door seems to set off the squeal. Driving down I-35 this afternoon was a bit of an ordeal because the squeal was unending. If I leaned far away from the door, it lessened, but who can drive that way?

The squeal continued intermittently when I got home, and at 7 o'clock p.m. I'd had ernough and took both aids out. There's obviously much about the aids that I like, but this squeal makes it hard to evaluate their true effectiveness. No pun intended.

I think I'll go out onto the web tonight or tomorrow and see what I can learn about Beltone True 9. There may be some user comments somewhere.


Hearing Aids Journal #7 -- Monday, November 8

Driving in the car along I-35 again today. The left hearing aid continues to squeal. Its squealing now as I sit here typing in my office. On the upside, when I listen to music, either in the car or at home, I can hear pieces of the music I've never heard before - a snare drum track that I didn't know was there on a jazz piece, a bell or synthesizer track on a country-rock piece I'd never noticed before.

Little kids' loud voices are like hack-saws on my skull.

I am listening to the car radio at half my usual volume, except perhaps on the highway where I'm also hearing the road noises, which compete with the radio. I took anything that could rattle out of the car, including extra cd's and cassette tapes.


Hearing Aids Journal #8 -- Monday, November 8

Remember to ask Tony or Jordan about the feedback issue. I found this in an interview with a Belton officer.

"The Beltone True 17™ has a feature called Feedback Eraser™. With this, you have five settings, starting with a very aggressive option called Whistle Stop where feedback won’t occur at all, even if you cup your hand around the device. The other settings adjust the feature sensitivity for patients without serious feedback issues. As a fitter, you can select different feedback options for different programs.

"The main difference, besides the number of channels in the circuit is how much adjustability you have for the different features or how many settings are offered. Obviously, Beltone True 17™ would have the most adjustability, followed by the Beltone True 9™ and then the Beltone True 6™.

"For example, we have a feature called Smart Gain™, which is an environmental classifier in the instrument that determines the sound environment a patient is in. When the wearer enters a new environment, it automatically adjusts the gain and frequency response based on the sounds of that environment. The Beltone True 17™ monitors seven different sound environments, True™ 9 monitors four, and Beltone True 6™ doesn't have this feature."


Hearing Aids Journal #9 -- Tuesday, November 9

I had to take my left hearing aid out during class today. The feedback was so loud that some of the students were able to hear it.
During the second class, my -right- hearing aid died. I got three beeping tones, then a pause and the more beeping tones, then the aid went dead. A few of the students were able to hear that, too. However, the students were understanding, and class went fine.
I didn't get another battery in until seven o'clock this evening. Actually, I forgot that I didn't have the hearing aid in until Diana mentioned the loud volume of the television. I'm wearing the right one now.


Hearing Aids Journal #10 -- Saturday, November 13

After Tony fine-tuned the hearing aids last Friday, things have improved immensely. I still get a little feedback squeal once in a while, but nothing like previously. Never quite sure what causes it. Nothing I can pin down. It almost always comes from the left hearing aid.

Yesterday's classes went very well. I got a little feedback on the way to campus, seemingly from the car door, but I'm just uncertain of that. No feedback however that I noticed during classes. I wore the aids successfully the entire day, taking them out long enough to use the steam room in the mid-evening, then replacing them.

The sport lock seems to work well. With a mirror or with practice, I can get that tiny loop of plastic in my ear. My glasses still feel a little awkward with the hearing aids in place. I'm not sure what the answer to that might be. Just getting used to it, probably. Tomorrow, I'll try my contacts with the hearing aids. I'm sure that will be more comfortable. At least, while the contacts themselves remain comfortable.

Today, the aids squealed twice in the doctor's office. The sound was loud enough for Diana to hear. If Dr. Raybould heard, he gave no indication. They settled down after that, however.

This evening, I got into the car to drive to the convention. The drizzling rain suddenly turned into a torrential downpour. I felt like I was inside the biggest popcorn popper on the planet. The sound of the rain on the car was almost painful. I pulled over under the overhang of a bank and pressed the button on the aids that changes channels. As I remember, I switched from the "basic" channel to the "multi-talkers" channel. The sound of the rain became much more tolerable.

I'd been looking forward to the convention as the ideal place to test the efficacy of the hearing aids. I can say that in one-on-one conversation, the aids are a huge improvement. In the noisier parties, my experience was mixed. I'm completely unused to the sheer volume of sound. If a speaker was reasonably close, I could generally hear all of the conversation. Sometimes, however, the volume drowned out speech no matter what. I don't really know what I expected, because I don't really know what a person with normal hearing might experience in the same situation.

As far as I know, only one person noticed that I was wearing hearing aids. She said that I turned my head a certain way and created a glint of light. At first, she thought I was wearing an earring, but then she saw the wire. Maybe others noticed and were too polite to say anything. I admit that I am somewhat self-conscious when wearing the aids.

Despite all that, my experience today has been mostly positive. For quite a while now I've been feeling increasingly isolated and pushed to the margins by my inability to hear. I've avoided conventions and dreaded speaking engagements. I became acutely aware this evening and tonight that, as a result, I've formed some habits that are engrained. I'll have to regain a certain confidence and retrain myself to take part in conversations again instead of hanging back.


Hearing Aids Journal #11 -- Saturday, November 13

It's been a full, busy day at the convention. As I prevhiously recorded, there are many situations where the hearing aids really make a difference. A few where they are problematical. Sometimes, the volume of a crowded room feels like a physical assault. If I try to cover my ears, an instinctive move, the aids squeal. But overall, I'm pleased at just being able to hold conversations.

At dinner, I finally asked the four other people present if they had noticed the aids or were just being polite. None of the four had noticed - so they said. I choose to believe.

I took part in a conversation in the art show a little bit ago. One of the women said that she had always assumed that I was drinking a lot because in the two years she'd been trying to talk to me, my responses were always off. So I "came out" about the hearing aids and my hearing impairment to a lot of people tonight.


Hearing Aids Journal #12 -- Sunday, November 14

Diana says that she's hearing a high-pitched squeal from my left hearing aid when I'm -not- hearing it. I'm not sure what that's about. Is there a range of squeal that's beyond my hearing even -with- the hearing aids?

I took the aids out just a short time ago after wearing them almost the entire day. Down here in my office, alone in the quiet, I did not have the "bucket" sensation. I assume that's because it is so quiet down here. Or maybe I am just starting to get used to this.

I shot four videos today, and I'm pleased that I could not detect the hearing aids at all in the raw film footage.


Hearing Aids Journal #13 -- Wednesday, November 17

I still continue to get some ocassional feedback, but nothing at all like in the first week. Today, my sport lock kept popping out of place. My students must have thought it kind of funny to see a piece of plastic sticking out of my left ear.

This evening, while working on the computer, I put on a pair of headphones. That didn't work very well at all. The hearing aids squealed loudly.

Something new while I was eating a sandwich tonight. My left ear kept making a static crackling when I chewed.

Diana bought me a new winter aviator-style hat. I haven't tried it on yet, but I'm wondering how the hearing aids will react to anything I put over my ears, whether it's a hat, a stocking cap, or ear muffs. I'm guessing the brush of the fabric over them will translate into a lot of noise.


Hearing Aids Journal #14 -- Sunday, November 21

What a strange, remarkable journey. Yesterday, while driving along I-435, I kept hearing this odd noise. I couldn't identify it at first. I asked Ron once if he had the car window up tightly. Then, I realized what I was hearing -- the cars on the far side of the highway going in the opposite direction with a soft "whoosh."

There has been no feedback issue at all since Tony added the larger dome. The battery in my right aid died at a most annoying moment in the middle of the new Harry Potter movie Thursday night. And the battery in the left aid died while driving yesterday.

The KaCSFFS Thanksgiving Dinner offered another "coming out" opportunity. Again, the sheer volume of noise and conversation got to me, and I eventually retreated into a corner. Changing from channel one to channel two didn't make that much difference in that kind of crowd, so eventually I took the right hearing aid out. One of my friends saw it in my hand, and several others joined us. I explained how I'd actually been hearing impaired since the chemotherapy and just done my best to cover it up. It was a good conversation, and one I probably should have had years ago.

Still, while I was sitting alone before removing the aid, I reflected on a conundrum. I've felt isolated for a long time by the hearing impairment and what I thought was my need to hide it. Yet, as I sat alone at the dinner party, I felt isolated again by the overwhelming volume. And, I admit, by a certain shyness about wearing them.

Most of the time, however, I do forget that I'm wearing them. And I could not have sat in that corner and held that conversation with Jan and Ken amid all that noise without the aids. The advantage in one-on-one conversation or in small groups is undeniable.

Hearing Aids Journal #15 -- Friday, November 26

I'm coming down with a head cold today. Wore the hearing aids to the family's Thanksgiving Dinner. The conversational volume was very loud, and I retreated with my computer to a corner of the living room.

I had an interesting experience at the gas pump on the way home. Without nobody around, I suddenly heard voices and a sound. It triggered my self-defense reflexes. But the voices were at a "Redbox" fifty yards away. I couldn't distinguish the proximity or direction at first.

My winter cap is not a problem with the hearing aids. I had wondered about that, how the scrape of the fabric on the aids might sound. It's not an issue, at least not with my aviator's cap.

If my ears stop up from this cold, as they often do, it's going to be an interesting experiment. How will the aids sound if my ears are congested?
25 comments or Leave a comment
redhochipe From: redhochipe Date: December 29th, 2010 12:39 am (UTC) (Link)
Yeah! Good to hear. Get a digital one. I hear they work great! Hugz and there no sense in not getting one to hear things again. We love you!
robinbailey From: robinbailey Date: December 29th, 2010 06:00 am (UTC) (Link)
Randy, these are nine-channel digital hearing aids. State-of-the-art. And we love you, too!
jimmy_hollaman From: jimmy_hollaman Date: December 29th, 2010 01:03 am (UTC) (Link)
Glad to see you finally telling people. I had often wondered if you was going to tell any one about this. (i have known for a quite awhile)
robinbailey From: robinbailey Date: December 29th, 2010 06:03 am (UTC) (Link)
Jimmy, it was extremely frustrating, and although it might leave people scratching their heads, I'd added just downright embarrassing. But yes, people close to me and people that I spent a lot of time with had all figured it out.
jimmy_hollaman From: jimmy_hollaman Date: December 29th, 2010 01:35 pm (UTC) (Link)
Actually i figured it was the embarrassing part that was a major factor. Hell there is a lot of stuff i have not told people because its embarrassing to me. I'm glad you are finally telling people tho.
ebonypearl From: ebonypearl Date: December 29th, 2010 01:08 am (UTC) (Link)
I have a hearing impairment, too, but approached it differently since hearing aids don't work for me. I have - after years of hearing loss due to both chemo and being too near the Murrah Building when it blew up - acquired a hearing assistance dog. He made a tremendous difference in both my ability to maneuver alone and in sociability. If you are a dog person, you might consider a hearing dog as a supplement to the hearing aids.
deborahjross From: deborahjross Date: December 29th, 2010 02:11 am (UTC) (Link)
Not to mention all the other benefits of having a canine companion. (And dogs love having a job to do.)
robinbailey From: robinbailey Date: December 29th, 2010 06:04 am (UTC) (Link)
Ebonypearl - see the comment about finally being able to hear my kittens purr and meow. Are there hearing-cats? LOL.
ebonypearl From: ebonypearl Date: December 29th, 2010 10:48 pm (UTC) (Link)
"Are there hearing-cats?"

There are service cats. I have met several service cats - one was a seizure alert cat, and two were dexterity assistance cats trained to pick up and fetch and carry small items and to open doors and turn keys. I haven't met a hearing assistance cat, but I know that one of the right temperament could become one. There's no law stating what sort of animal an assistance animal must be, and some animals are better suited to some tasks than others.

If a cat can be trained to alert reliably on sounds you need to know about, can be socialized to behave in public (no hissing at people or animals, no running off, acclimated to elevators, crowds, noise, shopping carts, and other such public events, and to obey basic commands like sit, down, leave it, drop it, and come), and will wear a service harness or jacket and walk on a leash, then yes, a cat can serve as a hearing cat.

I have a friend who has a hearing assistance macaw, but most of the hearing assistance animals I know are little dogs (Corgis, terriers, chihuahuas).
(Deleted comment)
robinbailey From: robinbailey Date: December 29th, 2010 06:06 am (UTC) (Link)
Thanks, Pat. And Deborah, too.
(Deleted comment)
robinbailey From: robinbailey Date: December 29th, 2010 06:09 am (UTC) (Link)
Tina, there are still certain really noisy situations that I find stressful. Loud restaurants with all the conversation and clanking of pots and pans and dishes, etc, kind of get to me. One or two really noisy parties at Contraceptions, also. I told both Ron and Diana at different points that I'd been isolated by not being able to hear - and now I'm isolated in some situations by hearing too damn much! But I'll take the latter, and my audiology team suggests that in time I'll get used to the volume of background sound the way that hearing-normal people learn to tune it out.

deborahjross From: deborahjross Date: December 29th, 2010 02:15 am (UTC) (Link)
So glad you're getting help and that the technology is there for you. Enjoy all the wonderful sounds!
gregmce From: gregmce Date: December 29th, 2010 03:37 am (UTC) (Link)
So glad to hear the aids are working for you and that they're getting the feedback under control. And if people look at you funny just tell them you're wiring into the internet through your ears and then they'll just get jealous.
robinbailey From: robinbailey Date: December 29th, 2010 06:12 am (UTC) (Link)
Greg, such is the state of the technology now that these aids have blue-tooth capability. I can have them programmed to attune to my cell phone. (I chose not to do that.) And I could also have the television piped directly into my hearing aids with a tiny transmitter box on the set. (Also chose not to do that.)
wyld_dandelyon From: wyld_dandelyon Date: December 29th, 2010 03:42 am (UTC) (Link)
I still haven't had the chance to tell you in person how glad I am that the chemo worked for you. Since our in-person interaction was almost limited to late-night filking, I suppose that's at least in part one of the side-effects of your hearing loss. I'm so sorry this happened, and glad that you've found a way to improve your life. I hope that the hearing aides let you enjoy music again, at least to listen if not to return to performing!

And having been beset by invisible frailties most of my life, I have to say that being with people who are aware of them is an improvement over trying to pretend, and being tripped up by them repeatedly, and getting hurt or hurting others in the process.
meowwl From: meowwl Date: December 29th, 2010 05:21 am (UTC) (Link)
I've actually known that you were having difficulty hearing for a while...I live with my hearing impaired dad, so I know the signs. It's why I try to almost always be where you can see me when I'm talking to you.

I've always wondered why people seem to be more embarrassed at wearing hearing aids than they are going "Huh?" every five minutes. It seems to me that asking people to repeat themselves would be more embarrassing.

It's no surprise that Diana heard the feedback squeal that's too high pitched for you...Women naturally hear higher pitches than men...and younger people hear them better than older.

It sounds like you need a volume knob on them that you can adjust yourself as the situation requires. The feedback thing is usually resonance, some tiny little sound rattling around like light in a laser, rather than interference...I had an uncle come up with a solution of sorts...he stuck little pieces of masking tape across the microphone hole on them if it got too loud. Seems it buffered the sound just enough to keep it from squealing.
robinbailey From: robinbailey Date: December 29th, 2010 06:20 am (UTC) (Link)
In this case, the feedback was a result of the internal structure of my left ear. The tiny receiver did fit firmly in the canal. The audiologist added a very small rubber baffle that keeps the device in place now. Problem solved.

The deal with "huh?" is that you can pretend it's the other person's fault for not speaking up or for mumbling or for not enunciating. You can deny that the problem is really yours. Yet, I know I've inadvertently insulted a few people by misunderstanding them. And at least one lady at Contraception told me that she'd just assumed I was drinking too much because of my inappropriate responses over the years. Heh. That's one excuse out the window! LOL.
spiziks From: spiziks Date: December 29th, 2010 04:38 pm (UTC) (Link)
Don't think of yourself as hearing impaired. Think of yourself as an experimental cyborg, dude! I mean seriously--bionic ears!
robinbailey From: robinbailey Date: December 29th, 2010 06:08 pm (UTC) (Link)
Right. I'm hearing-ENHANCED. It is weird to eavesdrop on conversations two tables away at restaurants. I have a sort of humorous idea for a science fiction story: this new generation of aids can be programmed wirelessly. I foresee some mischievious person randomly hacking into and reprogramming peoples' devices.
mabfan From: mabfan Date: December 29th, 2010 07:54 pm (UTC) (Link)
Robin, thank you for sharing this.
farrandy From: farrandy Date: December 30th, 2010 02:47 am (UTC) (Link)
Sorry to hear, that is to say, read this, but I'm glad that you're getting something done about it. I may have to be dealing with it myself some time in the future--I've have tinitus (ring in the ears) since I was a teenager (found out when I took a hearing test and was raising my hand when no tones were being played in the earphones). It was mild back then; only heard it when everything was quiet, but now I can hear the ringing all the time. To many years around printing presses and bindery equipment probably didn't help.

I understand the vanity aspect--when I had to get bifocals, I went for the type with no lines even though they were more expensive. Me? Vain? Never!

And BTW, movies -ARE- too loud. Ask anyone over 25.
From: (Anonymous) Date: January 1st, 2011 03:18 am (UTC) (Link)
Man does not always hear with his ears
robinbailey From: robinbailey Date: January 3rd, 2011 07:21 am (UTC) (Link)
Nor see with his eyes.

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