Tag Archives: hearing loss

You Don’t Know What You Don’t Know: Hearing Loss

A few of us experienced HoHs (hard of hearing people) got together to discuss hearing loss and our discoveries along the journey. Deep in the discussion, we began to talk about how much we didn’t know until we met other HoHs. The journey starts solitary and our hearing professionals were of no help early on in our lives. We learn by trial and error, through embarrassment and if we are lucky, from others with hearing loss.


Flunking the public school hearing screening in the 1960s didn’t mean much to me, because I had no idea that what I heard was not what everyone else heard—quite typical for someone who loses their hearing gradually and progressively, no matter your age.

Here are a few more things that I didn’t know that I didn’t know from childhood:

  • My brain could work wonders to compensate for my damaged auditory nerves—fine tuning my lipreading skills and filling in the blanks of what I missed in other ways.
  • I didn’t even know that I could lipread until the doctor who made my diagnosis in grade school told my mother, “She has likely had a hearing loss for years. She is lipreading everything I am saying.” 
  • I was clueless that the reason I could never keep my head bowed while my Sunday School teacher prayed—I was admonished when I was caught—was because I needed to look up to watch her speak in order to understand what she was saying. I wasn’t simply being defiant, I was lipreading.
  • I didn’t know I needed to advocate for myself. Even if I had, I wouldn’t have known what that looked like, because I didn’t know anyone else like me. I didn’t know I wasn’t the only one.

It took looking back at my childhood from my early 40s to recognize some things were even related to my hearing loss.

No one suggested hearing aids, and I was left to figure out my hearing loss on my own for my entire childhood. I didn’t see an audiologist or have another audiogram, outside of public school screenings, until I was married. I tried hearing aids from 1980 through 2009. That is almost three decades of relying on audiologists—who I always had considered experts—to teach me everything I needed to know about my hearing loss, hearing aids and anything else that was available to me. It wasn’t until I joined an online hearing loss support group at age forty-eight that I realized how my audiologists had failed me. None of them had thoroughly explained the particulars of my audiogram, outlined realistic expectations of what hearing aids could do for me, or steered me toward services or equipment that might help me cope better. I even discovered that I have severe hyperacusis (officially diagnosed at Mayo Clinic in 2010) through my own research.


As a teenager I started  losing my hearing and in my early 20’s I got my first pair of hearing aids. As of now, that’s 30 years of hearing aids with 6 different brands. With all those audiologist visits and all they did was sell me hearing aids or tweak my programs (more when digital hearing aids came along).  For over 15 years not one audiologist offered me information on support groups. The biggest thing they never told me was that my hearing aids did NOT fix my hearing loss.

  • Everyday I struggled to hear at work.
  • Quite often someone would ask me if my hearing aids were on when I asked for a repeat.

It  left me feeling inadequate and like it must be my fault somehow. I shied away in social situations and my young kids would often help me hear, translating what was said. Why did I understand my kids more than adults?

Through my own efforts, I found support groups for hearing loss where I found new resources and learned:

  1. Hearing aids work best within 6 feet. That’s why I couldn’t hear from other rooms even with my hearing aids on. I learned this many years into wearing hearing aids from my state Deaf and Hard of Hearing Center.
  2. Hearing aids work best in quiet environments with good acoustics. The room could be quiet and I might still have a hard time if the acoustics are harsh. Reverberation (tiny echoes) aren’t something hearing aids can process well unlike normal hearing. Again learned through classes at my state Deaf and Hard of Hearing Center.
  3. No audiologist explained my speech discrimination scores. Without hearing aids or my eyes I had a 30% word discrimination. With my hearing aids and without looking my hearing aids gave me a 60% percent word discrimination. With my eyes and me being able to lipread, I got 90%. Me lipread? Yes, I use lipreading even though I didn’t know I was doing it for years.   I learned this reading a book, Missing Words, many years later also.
    1. None of them told me I had lost certain consonants due to being profound deaf in that frequency range. That’s why the words I heard had holes and why it remained difficult for me to understand speech.
  4. I used lipreading as a natural instinct. Learned after taking the Speechreading class and then teaching it over and over. Hindsight.  

Sometimes we don’t know what we heard was wrong, which happens to us all.


While working for one of the top twenty private companies in America, I was sitting in a management meeting when the president of the company directed a question to me personally.  I answered the question, there was no further comment, and the meeting continued. Afterward I went back to my office, my boss walked in and said, “You know you really embarrassed yourself when you answered that question. I was devastated and humiliated. Apparently I had misunderstood the question and answered inappropriately. From that time forward, whenever I’m in an important conversation or ask a question that’s obviously noteworthy, I will repeat the question back to the speaker to confirm my understanding before commenting or answering any questions. I never want to assume I understand what’s being said in that kind of environment again.

Once we all learned more about our hearing loss, we felt like years were wasted, diminishing ourselves and taking the extra burden of communication with a dash of shame thrown in. Hearing aids were the only option we were given without knowing their limitations. Once we found each other we learned alternative solutions and better self-advocacy skills.  We could have been more successful with our hearing loss earlier in life if we had been given more tools by our hearing professionals than just hearing aids, or least pointed to one of several support groups.  

Things Learned in Two Years

I’ve thrown my passion into my job, it’s rewarding to help people who are in a tough spot with their hearing loss.  Support groups and resources have helped me great deal in the past and now I can give back. I still very much enjoy my job even when I experience setbacks, the challenges. I’ve continued to learn things, that never stops. Working with hearing loss for 40 hours a week has me wanting to set it aside when I get home. Computer use too since I use it so much at work.  Now I work at home too!

For the last few months I noticed I have missed writing here. This is my voice and not the states voice, not that there’s much difference.  The state and I are pretty much on par with each other for the hearing loss community and I have a couple of good supervisors who are supportive of my efforts.  Still, here I’m not on my ‘official’ platform.  I’m going to try to shoot for a blog piece twice a month. Today I thought I’d go over some things I’ve learned the past couple of years.

Number 1: I don’t have all the answers, but I have a large network of people to work with. I love my tribe. I’m so happy to have a network of hard of hearing friends to share knowledge with. That’s what counts in the end. Sharing with each other.

Number 2: I used to think there wasn’t as much opportunities for the hard of hearing so I wanted to create more events, more presentations and workshops. I was disappointed at first at few came but the few who came made it worthwhile. (But more on this for number 6.)

Number 3: It’s difficult to bring the hard of hearing together. Why is that? Are most of still stuck mostly in the hearing world? People take so long to seek support. Denial? The tribe has been so important to me and I’ve made some of my best friends within it. They understand me, we understand each other, so I love opportunities to hang out together. Together we can do a lot. If 20% of the population has some sort of hearing loss, why don’t more seek this out too? It’s been a valuable part of my journey.


Some of the tribe

Number 4: Most hard of hearing people don’t advocate for themselves well. We can tell them how and what to do yet most won’t follow through. “I don’t want to be a bother.”  Or “my HR department would never do that and I can’t lose my job”. (These are hard times at the moment.)  Basically it’s fear of being different. We are the same, the only difference is we have other communication needs.  If you are afraid to ask for accommodations, then it’s best to be upfront about your hearing loss and there’s fear there too.  It’s a sort of vicious cycle. We need to learn vulnerability in order grow and gain confidence.  (See Brene Brown.)  Also, can you imagine if we all stood together? If more of us asked and introduced accommodations, we would pave a road.

Number 5: My sign language skills have improved. People say I’ve improved but it’s a slow journey.  I’m not fluent yet but I can get by now.  The reason for improvement is the 40 hours a week at work around the Deaf so I have someone to practice with. I also picked up another great hard of hearing friend who signs and she works me too. I compare my sign to my hearing loss, both have holes and I need to fill in gaps as needed with other ways…CART, slow down, lipreading.  It all combines fairly well these days.  This is a hard accomplishment for those of us who have no one to practice with.

Number 6: There are small blessings from COVID19. I was sent to work from home in mid March and I’ll be working home until the end of summer. Our program started having classes online the first week of April. We also started presentations online (Google Meet with Live Transcribe and CART too) and regular Friday morning social. We have hard of hearing assistants around the state and we were boxed in by counties. When we went online that border disappeared and we were suddenly open all over the state.  I invited out of state hard of hearing friends to participate and that opened each class and presentation up to more experiences. I’m slapping my forehead with a great big DUH! Why didn’t we do this before?! I now have more opportunities for more hard of hearing people and have helped people all over the state and then some. I’ve met other hard of hearing specialists from other states. This is the way to go. When things get back to normal (ha ha ha, whatever that may be now), we will continue online classes and combine them with in person events too.


One of the socials


That’s enough for now. It felt good to share again, thank you. I’ll be back.

Hearing Loops

My first hearing loop experience was at the Hearing Loss Association of America (HLAA) convention in Rhode Island last year. At my first workshop, one of the coordinators announced that each workshop was looped so be sure to turn on our T-coils. Excited to try this technology I’ve only heard about, I turned mine on. It took less than five minutes to be totally amazed. I heard so well, I felt like a hearing person for the first time in years, watching the speaker instead of the CART screen. The clarity through the loop was a hundred times better than using an FM system. As a bonus, I heard through my hearing aids alone instead of borrowed earphones or neck loop wondering where they were last and were they cleaned and sanitized? This time I simply pushed a button on my hearing aid and I heard. Why wasn’t there more of this available in America?

I had to find a way to share this technology however I could at home. I wanted other people to experience it and know the difference too. On our local Walk4Hearing committee we had Kristin who works with Listen Technologies. In the past, they supported our Walk with assistive listening devices but I knew they were getting into hearing loops too. Could we loop our Kick Off party for the Walk? Yes, she was willing to set that up for us and even better, she could probably set up a portion of our stage area at our Walk in the park too.

The Kick Off party was small but those of us who were there with hearing aids or cochlear implants, used out T-coil. We sat at our tables and heard the speakers. Listen Tech also looped our registration table making hearing above the noise a piece of cake. The day of our Walk, lots of people showed up and there were signs posted everywhere encouraging people to try the hearing loop. During our entertainment which happened to be a clown who told lots of jokes and stories, I looked around and saw people with hearing aids and CI’s laughing along with the rest of people. Later, speeches came through loud and clear making it a memorable Walk.

w4h Kristin

Kristen from Listen Tech pictured here with the ALD’s they handed out at the Walk4Hearing in Salt Lake City.

A few weeks ago, Listen Tech held a convention for their distributors. They invited some of us from the hearing loss community to come to their hearing loop workshop portion. Juliette Sterkens, AuD from Wisconsin spoke first and she gave the best presentation on hearing loss I’ve heard. She talked about who is losing their hearing and why. She explained audiograms. She talked about high frequency hearing loss (the most common type) and what’s it like; how we hear vowels better than consonants and how our mind struggles to fill in the missing pieces.

Giving a visual example, on the screen appeared the sentence, “She saw oars bobbing.” Beneath it was missing letters. Take away the original sentence, she filled in the gaps and it became “She saw cars fueling.” She also ran audio recordings to show exactly what hearing aids pick up in churches, court rooms and restaurants. Then she played a recording of what it sounded like through a loop. The difference is astounding. The hearies in there were beginning to understand our world a whole lot better. (You got to share the link above with hearing family and friends.)

She went on to explain that hearing aids work best within a four foot range picking up the closest and loudest sounds like coughing, papers rustling, babies crying. The speaker twenty feet away is lost in the noise that surrounds the hearing aid user, unless using the loop. The loop brings the speaker right to the ears and cutting out surrounding noise.

Five of us who were hard of hearing sat in the back of the workshop at a looped table where it was impossible to lip read… and we all heard every word Juliette said without the benefit of CART. Normally in this kind of situation, I have to arrive early and make the presenter aware of my hearing loss. I ask them to wear my FM system and face me as much as possible because I use lip reading too. I stake out my position up front and in the center where I still very much struggle to hear. After two hours, I’m exhausted mentally and physically. Here, Juliette talked for almost two hours and I felt no fatigue at all.

Our view of Juliette from the back of the room.

Our view of Juliette from the back of the room.

Our looped table.

Our looped table.

The incredible loop set up at the conference let me hear audience participation as well for the first time in many, many moons. Every chair had a wireless microphone. To ask questions or add comments to the discussion, we each had to turn the mic on which also fed into the loop system. To top it off, a screen at the front of the room had each microphone listed in a diagram. The seating was assigned so anytime someone turned their microphone on, their spot in the room was highlighted red on the chart and their name listed to the left of the diagram. What a fabulous system, incredibly inclusive, for anyone with or without hearing loss.

The microphones in front of each seat.

The microphones in front of each seat.

The chart showing who was talking and where.

The chart showing who was talking and where.  This isn’t the best of pictures but hopefully you get the idea. 

The first half of the seminar was about hearing loss. The second half was the technology side of hearing loops and were invited to stay. I’m not a techie but I’ll give it a go… A loop system consists of an audio source, a loop driver and wiring. Cables or loops are laid around the room according to size and specifications creating a magnetic field which hearing T-coils pick up. It brings sound direct to the ear eliminating audio distance. There are various choices of loop drivers and different ways to layout the wires according to the needs.

As I understand it, past looping systems, which started in the 70’s, had lots of problems which turned off both the users and the people who bought them. Today’s technology has improved by leaps and bounds. Qualified installers are able to get beyond the biggest problems which are over spill and metal interference. Over spill happens when one loop system spills over into another looped room but this can be eliminated with different wiring and layouts. I didn’t understand how they get around metal interference but they do with various techniques. They showed us 6 different layouts and discussed common pitfalls and fixes. All I know is the loop systems I’ve experienced in this last year have delivered terrific sound.

Hearing loops are my favorite way to hear. There’s other technology out there with bluetooth being touted as the next big thing. I have a bluetooth device that connects my hearing aids to my phone. It drains the battery on my hearing aids, the bluetooth device itself and my phone super fast. It’s handy but it comes with a price. Using my t-coil doesn’t drain my hearing aid batteries any faster than normal so I keep them longer.

When you see this sign:

 telecoil ALD sign

Turn on the t-coil in your hearing aid and give it a try. (Signs are required by the ADA.) Many tourist sites and tours in Europe are looped and it’s gaining popularity here in the USA. Recently the New York subway system was looped in certain places and a taxi company in NY will be looping their cabs soon. Quiet a few churches are getting loops here too as well some colleges, auditoriums and senior centers. Many people are getting their living rooms looped for a higher quality television sound too. How about some places we’d like to see looped: drive thru speakers, bank windows, theaters and meeting rooms. It’s a world of possibilities.

At the end of the workshop with Juliette and Kristin in the back and middle of the row. That's me in the brown in the back row too.

At the end of the workshop with Juliette and Kristin in the back and middle of the row. That’s me in the brown in the back row too.

Here are some further links to check out:

http://hearingloop.org/ David Myer’s site

http://loopwisconsin.com/ a site Juliette Sterkens runs

Audio Induction Loop via wikipedia

http://www.hlaabq.com/LoopNM.html Loop New Mexico campaign

HLAA’s Get in the Hearing Loop

http://www.aldlocator.com/ Assistive Listening Device Locator

9 hours average

I went to see my audiologist again while in Salt Lake earlier this week (back in AZ now).  I logged in on a total of 577 hours with my hearing aids since I last saw him.  It averaged out to 9 hours a day.  I said something like, “Not ten yet but I’m working on it.”  He said he was thrilled and “I’m not going to split hairs with you. That’s great! You were only averaging 3 hours a day the last time.”

So he turned up my hearing aids a bit. He told me he only turned them up a tiny bit but it sure seems like a lot to me. I spend a lot of time in my noisy environment program. I can hear my cat meow a lot more. He is a talker! I even heard him from behind me while we were driving down the road. (He stays with my mom when I’m gone for an extended time.) It’s nice to hear him. I mostly lip read my cat before this current audiologist reprogrammed my hearing aids.

I think I hear more birds too. I’m at the city library now and I’m amazed at all the noise in here, even in my less volume noise program. Aren’t libraries supposed to be quiet?  I had to ask my mom to not talk as loud as she normally does.

When I take my hearing aids out, I really do feel nearly deaf. I’m shocked each time how little I do hear even though in a way the quiet is welcome.

I asked my audiologist to make me a note for Motor Vehicle Division here to add to my driver’s license, a note saying I’m hard of  hearing since the MVD won’t take my word for it. This way, if I’m ever pulled over or in an accident, the police or emergency people know what to expect.  He was happy to write one up for me and put in it I have a moderate to profound hearing loss.  I do? I didn’t know I was that bad.  I thought it was mild to profound.

This makes me wonder at how well I do in the world. I feel like I get along fine but how much struggle do I put into hearing without knowing it?


My World

I attended a small SayWhatClub gathering in 1998, about 30 of us camped out in Rocky Mountain National Park.  No one felt left out of conversations, everyone was included even it took 5 repeats.  We hiked, toured the country and hung out late around the campfire.  I left feeling happy, super glad I went to spent time with others who are hard of hearing like me.

Two weeks ago, I went to the Hearing Loss Association of America’s convention in Rhode Island.  I left Salt Lake with smile on my face  knowing it would be ‘my world’ there.

I had two roommates, one I found on the message boards and the other found me through someone I know in the SWC.  Laura came from Massachusetts and  Robin from Colorado and we were all three in 40’s which we didn’t realize until we met.  We hung out on the edge of our beds, talking like girls at slumber party until late. Laura is hard of hearing with only one hearing aid right now, waiting for money to buy another.  She’s mellow and a calming influence, easy to hang out with. Robin is basically deaf, hearing only enough noise with her hearing aids to make her look up but is the most excellent lip reader I have ever come across.   If she’s looking at someone, she comes across totally hearing.  It’s amazing and she shrugs off admitting she’s one of the few.  She grew up oral not allowed to sign.

Before I left Salt Lake, I set my phone with times and places of each workshop I wanted to attend and forgot about it.  When I looked at my schedule Thursday morning, I thought things were off somewhat but couldn’t be sure without a program book and access to all my email.  I poked my head into a research workshop I signed up for thinking maybe I was half an hour late and found out I missed the whole thing!  I spent half an hour with them and went out to take a closer look at my phone/calendar.  Oh man, there’s a button to push to change time zones for each event I enter into it.  I showed the research event for Denver time.  So I sat down with my phone and switched all the other events to New York time.

Mostly I attended workshops around building our local chapter.  Thursday afternoon was all about harnessing group dynamics with a two-part workshop.  Before the actual workshop started, a lady reminded us to turn on our T-coil because the rooms are looped.  I did and WOW!!!  I never experienced it before this and I was totally amazed at the clarity of sound coming through my hearing aids at the push of the button.  I heard so well, I hardly needed CART (it’s also helpful the that the presenter was male).  I’m all for loop technology now and wish it was in more places in the U.S.  It’s all over Europe but we are slow getting it going here.  Anyway, he presenter made the class a lot of fun and I left feeling high on life.

Next came the Presidents reception where I met two SWC people in person I never had before but they each had a group around them and I guess I didn’t want to intrude.  I felt a little awkward there, sipping wine, wandering around, chatting to people I didn’t know.  Before I left, I wanted to thank someone for all his help during our first Walk4Hearing here and he introduced me to a dynamic lady who is working with 6 Walks in the north-east.  I got so many wonderful ideas from her to share with my group here.  That was one of my best contacts made while there.

When the reception was over I wandered to Meet and Greet sponsored by Caption Call, from the Salt Lake area.  Feeling good about being there, making connections.  I walk by a guy making balloon hats and I gotta have a balloon hat, not just a regular hat, it had to be a great hat I explained to the artist.  After getting the hat, I saw someone I knew from Caption Call and she took a picture.

Then I saw Laura and we wandered over to the tables with 3 caricature artists at work.  He wanted the balloon hat off.

I put my hat back on started to mingle.  I met so many neat people and I have such a hard time remembering names.  I wound hanging around a guy who’s been coming to these things for 15 years.  He kept introducing me to people so by this time, faces started to blend together.  John’s another great person, born basically deaf, growing up in the oral world (but doesn’t lip read like Robin) and learning sign later. He has two cochlear implants and loves techno music for the beat.

The next night I joined his group for dinner and he introduced to me two more neat people, Nini and Elenore there with their families.  They were hard of hearing and signed as they talked.  It’s an additional tool to use they said.  At first I felt a little intimated around them as they signed but as I relaxed I started picking up some of the sign and even using some of it myself.  What I didn’t get verbally, I sometimes caught in sign.  How wonderful to be around people like that.  I soaked it up.

There were more workshops with loops and CART, more lunches and dinners with more people to meet.  I couldn’t get enough of it, staying up late with everyone but being an early riser made for very little sleep.

The city of Providence puts on a weekend show on the river called Firewater. They have steel bowls anchored into the river, load the bowls with wood and boats go around lighting the fires with ceremony and music.

Complete with a fire spinner.  Most of the people around me hadn’t seen this type of thing before but me being an experienced Burning Man person had.  I bet the guy spinning in front of the boat (not the best of pictures, sorry) is a burner.

There were some oh’s and ah’s as the guy spun some steel wool.

And that was my last night there. I don’t think I went to sleep until after 3 a.m.  I met more neat people that night.  Of course I woke up early. I attended the morning awards breakfast to watch a local friend of mine receive a distinctive award for all the advocating she does.  I also got a token award for working with the Walk4Hearing.  The event came down fast after that.  A handful of us stayed, talking in the convention center until we decided to go to one last lunch together.

I’m in the middle on the right with Robin the most excellent lip reader sitting in front of me.  John with the two CI’s is sitting almost across from me.  We sat there right up until the time I had to go to the airport, thank goodness I made for a later flight.  My original plans were to see Rhode Island that afternoon, to explore the area since I’d never been there before.  That never happened and I don’t regret it either. It was much better hanging out with people who understand my world, who are part of my world.  John had his car with him so he drove me to the airport.

I got on the plane thinking my time had ended. I settled in while people continued to file in.  I look up and there’s one of the SWC people I didn’t get to talk to much.  I waved Debbie over and she sat in the seat next to me.  We talked all the way to Chicago, convention bonus time.  I enjoyed the time spent with her, getting to know each other and it was the perfect way to end it all.  Once in Chicago, we had different flights to catch.

What and awesome world it was.  The SWC convention will be here in Salt Lake next month. I helped arrange bits of it.  There will be 50 of us instead of 600 + but it will be all the same sort of affair; workshops with loops and CART,   people I’ve met including Debbie on the plane and more neat people to meet.  There will be late nights, lots of noise (good noise) and more learning.

I came home sort of high, super tired and, I admit, a little cranky about having to come back the hearing world.  Thank goodness for the Sanderson Center where I get small slices of the above.

I think I could be addicted to these conventions.  I can’t attend the ALDA convention this year but next year it will be New Mexico.  Next years HLAA convention is in Portland.  I will do my best to get to both, getting as much of ‘my world’ in as I can.

Theater Captioning

A few weeks ago I went back to the theater to watch The Rum Diary on it’s opening weekend. Nothing, no captions.  People were talking and my CaptiView only said it was ready.  I went out to inform the people in the ticket office. They sent a manager to me who said to wait there and she would be right back. I paced the hallway for 10 minutes with my CaptiView in hand when another manager giving an interview at one end came to me and asked me what the problem was. He said he would be right back. I paced the hallway for another 10 minutes when I saw captions light up. I missed twenty minutes but figured I would catch up.

Not. It was the wrong captions and didn’t match the movie. Maybe the device searched automatically after so much time until it found captions? Near tears with frustration, my boyfriend and I left the theater room. A guy standing just outside the doors handed me two free passes and apologized.  They couldn’t get the captions to work this time so they gave me my money back too. It sort of made up for the sheer irritation of it all but I would have rather have seen the movie with captions.

Yesterday I went back again, with my free passes, to see the movie, Tower Heist. Surely, it would work all right since it wasn’t a brand new movie. We sat there I waited with tension through the previews. The movie started and nothing again! Damn it! I went out right away to inform management. They said they would be right back, har har. I paced a different hallway, looking at my CaptiView and nothing. I resumed pacing and the manager snuck up behind me and tapped my shoulder making me jump. She said, “It shows it working fine up there.” I looked at mine and it was displaying the captions now. I let her know I was tired of missing the beginning of movies and she patted my shoulder as I went into the theater again. The must have pushed the reset button I read about in another review of the device.

My boyfriend told me I didn’t miss much as I sat down adjusted the captions to my liking. I was not in the best frame of mind but eventually I settled in and started to laughing with rest of the people in there. Alan Alda makes a great bad guy.

I like the idea of having movies back but it’s not without irritation. How many more movies will I miss the beginning to in this process? From now on I will go earlier (my boyfriend is contantly late) and ask them as soon as I buy my ticket to please push the button before hand. Maybe the more they see me, the better they will get at the process. As I walk in they will think, “Oh no, here she comes again,” but after awhile it should all fall into routine and maybe they will like my patronage.

All Cinemarks are switching to digital format, I believe, and will have CaptiViews available. Other theater companies will follow so I encourage all hard of hearing people to go forth and watch a movie. Go to the theater, inquire and let’s make our presence known. John Waldo has done a lot of advocating for us so don’t let these new opportunities go by, claim them. I’m going to be a thorn in their side until they get it right.

A Reading Tonight

I belong to one of 7 writing groups through our local community college.  Today is their 10 Anniversary Celebration.  There’s lots of writing activities going throughout the day and tonight around 6 they are having one person from each writing group give a 5 minute reading.  My group asked me to represent them.

It’s hard to put everything into I want to say about hearing loss in 5 minutes, I mean what to say???  I asked my group of friends in theSayWhatClub and they suggested I take on hearing aid reality.  So I did  and here it is:

Hearing Aids 101

Hearing aids aren’t called hearing miracles for a reason. Hearing aids help but they can’t reproduce true hearing. Technology is making advances but there is no cure for hearing loss. Those of us who wear hearing aids learn their limits but some hearing people around us seem to think once we pop our hearing aids in, we will understand everything. I’m here to tell you, even with our aids in we are still hard of hearing.

Sensorineural hearing loss, also called nerve deafness, is the most common type of hearing loss and it is permanent. With this kind of loss, some sounds come across at normal volume and others not all. Usually it’s low tones heard best with the higher frequencies missing. High pitches includes birds, bugs, timers, phones, kids and many women’s voices. In the alphabet many consonants are higher frequencies and vowels come across in low tones. Out of 26 letters in the alphabet, I hear five of them best; even with my hearing aids in.

Imagine going through your day hearing mostly vowels and only some consonants clearly. Many conversations are a constant puzzle to piece together. Take the sentence, “I’ve got to get my keys,” and try understanding it this way: I ot et I ee’s. For those with hearing loss, their mind races to fill in the blanks much like Wheel of Fortune with letters blanked out. Life becomes the Wheel of Fortune, only can I buy a consonant, please? The vowels aren’t as important. My hearing aids help me get a few more sounds but I still miss whole words. A busy day of ‘hearing’ can lead to exhaustion with all that concentration and mental activity.

Hearing people seem to think, “If only she would turn up the volume, she could hear.” Here it is in simple terms; volume distorts. Some sounds I hear well and some I do not. Take the word “shout” and try shouting it out. The “OW” hurts my ears coming across loud and clear but the “sh” and “t” are lost in “OW.” Shouting won’t work and neither will hearing aids with a super high volume because technology hasn’t caught up to missing frequencies.

Mechanical hearing pick ups mechanical noises better than sounds I want to hear. I can’t hear my phone ring, my cat meow, birds sing and I have trouble understanding speech but I do hear the garbage truck grind to a halt in front of my house, the banging of the garbage bin as it’s tipped over and set back down. In cars, I hear road noise better than the person sitting next to me. In restaurants I hear fans, refrigerators and soda machines, not to mention the clashing of plates and clattering of silverware far better than the person sitting across from me trying to have a conversation. This also applies to large gatherings. All I hear is the roar of the crowd which drowns out the person in front of me trying to talk.

Technology has come a long way and digital hearing aids have helped in that these noises don’t hurt my ears as much as they used to but I still can’t hear whispers, understand the television without captions nor lyrics in songs and I can’t understand what someone says from another room, even with my hearing aids in. Listening to people takes mega amounts of concentration. I use some lip reading, watch body language and facial expressions for clues and sometimes I still get stuck on a word or a whole sentence, even with the help of my hearing aids.

I don’t leave the house without my hearing aids because without them I am more lost and every little bit helps. The old analog hearing aids were much harder to wear all the time because they turned up all the noise, including those I already heard well. The newer digital ones suppress some sounds and then try to take sounds I can’t hear and turn them into sounds I can but even that program has it’s limits.

Eye glasses slip on and replace vision but hearing aids can’t do that. They help but they do not give me my hearing back. All the adjustments in the world will not replace true hearing. Please know I am tormented at my own failure to understand my native tongue, simple English. I come down hard enough on myself without others getting impatient with me. Once sounds are gone, they are gone and there is no magical cure.


  The other day we were heading to the post office.  My boyfriend said something or another and I didn’t quite catch it.  I asked for a repeat. 

  He said, “We are stopping the mail, REMEMBER?” 

  My automatic response was, “It’s a hearing problem, not a memory problem.  I couldn’t catch your words, ok?”

  He pulled into a parking spot and disappeared into the post office.  He came back out smiling and asked if I had my FM system for the trip we were about to take. I told him I did, for once.

  Even on the defensive I felt guilty for not even having my hearing aids in to begin with.  I really should automatically put them in every day.  Sometimes being without all the extra noise is nice however.  A toned down world can be less headache for me. 

  Four or five days later he did the “remember” thing again tho I do not remember the situation (har-har).  Where has this come from all of a sudden?  He knows I can’t hear well so why the “REMEMBER?”  I reminded him once again it’s not a memory problem (or is it, lol)  but a hearing problem.  It’s needing to make sense of the sounds I hear to make the word/sentence.