SayWhatClub

Tolls of Hearing Loss by Pearl Feder

It seems as though I’ve had hearing loss all my life but I didn’t.  I’ve only forgotten what it’s like to hear conversation without saying, “excuse me,”  “I’m sorry but……,”  ” could you repeat that please?” Music was never the same but I adjusted. People with hearing loss are good at that.  If we aren’t good at adjusting, we are good at faking it. At least, we think we are good at it.  When I was twenty years old, the Otologist told me that I would be totally deaf by age thirty.

It’s been forty years since I lost all my speech discrimination in my left ear.  I avoided wearing a hearing aid in my right ear until I was forty years old.  Someone had the guts to tell me that I’m not hearing everything that was being said to me at meetings, and that I should consider getting my hearing checked.  That gutsy individual and I have been good friends ever since.  I did land up getting a hearing aid on my right ear and my life forever changed.

Over the past nineteen years, my hearing barely changed until about two years ago.  I needed some minor adjustments to my aid.  Then again, about three weeks ago, I put on my hearing aid and thought the aid wasn’t working.  I changed the battery thinking, of course, it must be the battery.  But over the next few hours I began to realize something had changed.  Voices around me sounded muffled.  I couldn’t catch the words on my radio while driving. I could not hear the voices on the telephone, and worst of all, my own voice didn’t sound right.  The voices on the telephone were too low. No matter how much I turned up the volume on both my aid and the phone, I couldn’t hear.

My throat was hurting at the end of the day and I realized I was speaking louder than usual because.  I was exhausted from the emotional and physical strain of “listening.”  My friends noticed not only was I not catching conversations, they had to tell me to lower my voice in public places.  Immediately, I made an appointment to see my audiologist.

I was hopeful the audiologist would find something wrong with my aid.  After all, I had a hearing test only eight months ago and nothing had changed at that time.  As soon as I entered his office, he introduced me to his fourth year resident intern.  Then, he informed me that they would be doing a full audiological evaluation.  This way, I would not have to repeat it in four months, a year from my last one.

I hate, hate, hate, hearing tests.  They always insist on testing my left ear, even though it has been in the profound range for forty years.  With the shooshing in my right ear, and the deafening words in my left ear vibrating through every bone in my body, I want to scream.  “Isn’t this illegal? You are blasting loud noises in my ear!  Is it possible to be any deafer than I am in that ear?”   My body is thumping to the sound of BASEBALL, ICE CREAM, HOTDOG, AIRPLANE,  . . .

I have to laugh at the words used to evaluate us.  Don’t the audiologists realize we have those words covered?  The right ear goes through the same torture.  Only this time, as the words become louder with the added shooshing, my right ear begins to hurt.  Haven’t these people heard that loud noises can make us deaf?  Jeesh, I want to rip the headphones off my head.  But I continue to be compliant.

At the end of the test, the intern says to me, I understand you are very sensitive to change, there’s been a small change in your speech discrimination and the Doctor will go over it with you.   Hmm, yes, I’m sensitive to changes in my hearing because I know my hearing loss issues better than you do, is that what you mean by sensitive?  Small change in my speech discrimination, okay, I can deal with small change.  The Doctor explains to me that my word recognition has gone down from recognizing 12 out of 25 words to 7 out of 25 words.  Meaning, eight months ago, I had speech discrimination of 48% and its decreased today to 27%.

However, that’s not what “we consider a big change” he states.  I immediately respond with, but, if I am in a conversation with someone or groups of someone’s, we don’t speak one word sentences.  We speak in a flow of words, which make a paragraph which turns into a conversation of 100’s of words being said.  If I am only grasping 7 out of 25 one word sentences, what am I really hearing in a paragraph of words?

The Doctor said, okay, let me have the intern read a paragraph from a book sitting behind you.  As far as I was concerned, he could have put the intern in front of me and I would not have been able to tell him anything that was said.

As it turned out, he was very surprised that I could not even tell him what the subject of the paragraph was.  He then decided to reprogram the aid, while the intern read the same paragraph. As you may or may not know, with all the new technology, the computer hooks up to our aids and can program it instantly.

The second time, I managed to give him three or four words but still did not know the subject or topic.  The third programming produced a much better result. Though I could not give him word for word, I was able to tell them the subject and a synopsis of what I understood the paragraph to mean.  I was thrilled but I was grasping for straws and with those results, all I wanted to do was leave the office.

I asked the Doctor why my speech discrimination had decreased and he responded that it was probably the hair cells in my coclear, dying. My heart sank. All I wanted him to do was tell me it was just the aid.

The Doctor asked that I come back next week. I decided to return after my vacation in three weeks so that I could have time to adjust.  As it turned out, within two to three days, I began to hear exactly as I did prior to the adjustment.  With my leaving this week to go on vacation, I did not want to start looking into alternatives.  What alternative do I have?  Once I see whether more adjustments to my hearing aid can or cannot help me, I believe I will need to see a specialist who can tell me the decrease in my speech discrimination is as a result of hair cells dying in the coclear.  If this is the case, than clearly deafness waited exactly 30 years to happen.

There’s a part of me that is feeling very panicked and anxious about losing the use of communicating by telephone, speaking to my friends in a restaurant, hearing my children’s voices and other life situations that involve hearing, listening, entertainment and so forth.  I’ve always dealt with taking my aid off and feeling very comfortable in the silence.  However, taking my aid off permanently and staying in silence “forever” is not something I can honestly say, I can get use to.

Yes, I may be in some form of denial. I want to hold onto what I have. I want another hearing aid.  More than anything, I want the Otologist to give me a prescription that will unstuff my ears. I want to wake up tomorrow and have my 48% discrimination back.  But deep down inside, I know that is not going to happen.

I know the road ahead is going to be difficult as I readjust my work life, my personal life and my emotions.  I have to be okay because I want to be okay and because it’s important to me.   I’m not going to say I’m not anxious because I am terribly anxious about this change. I need to hear from others who have dealt with this type of situation.  Right now, I plan to go on vacation for a week to take a breather away from my home which has no furniture, no walls and no floors, compliments of Hurricane Sandy.  I need to get away from work and telephone calls to reduce my stress with communicating.

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.

ald

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.

Acoustics, Hearing Aids and Hearing Loss

Hearing Aids and Acoustics

 

Nothing defeats me and my hearing aids faster than bad acoustics. Some beautiful rooms have destroyed my hearing ability and rendered me deaf. Deaf in the presence of sound, how can this be? Here is Wikipedia’s definition of deafness: a degree of impairment such that a person is unable to understand speech even in the presence of amplification.

Amplification doesn’t cure hearing loss and hearing aids aren’t called ‘hearing miracles’ for a reason. Hearing aids are mechanical means of hearing. To get a better idea of how they work, turn on a recorder and record sounds of every day activity for about ten minutes then listen to it. Or imagine hearing life through a cell phone, wind over the cell phone sounds the same way in hearing aids. Some voices sound far away and some closer. Hearing aids pick up and amplify unwanted noises which makes the acoustics of a room all the more important.

Most of my hairdressing life, I worked in small salons which all had tiled floors. Five or fewer of us worked at each place. Blow dryers grated on my hearing aids like fingernails on a chalkboard but that wasn’t the only thing working against me. Four other blow dryers might be going off at the same time as well as hairdryers, then add people trying to talk above the noise. Sound bombarded me from every direction making me hyper-concentrate on the person talking to me in my chair. By the end of the work day, I was exhausted. I took my hearing aids out right after the last client for much needed hearing break.

Then I moved to the big city with big city salons. I found work in the most beautiful, professional looking salon I’ve ever been in. It had high ceilings with dark wooden beams lining it, big beautiful windows which started two feet off the ground and gleaming, hardwood floors. She decorated it modern style with simple stark furniture. Not much hung on the walls because the walls consisted mostly of windows. A rock shampoo wall made a unique feature in the salon. Another bonus was a basement beneath for storage and appliances like washer and dryer.

When I started working there, I struggled more and more with my hearing. There were times I couldn’t hear the person in my chair. After a few months, I noticed I coped better with only a couple of us working but when four or more of us were there, I got lost in the sea of noise. I tried working later or earlier in the day to avoid the noise but clients couldn’t always come in during those hours. Many a day I went home to throw myself on the bed and cry in utter frustration.

Thinking maybe I’d lost more hearing, I consulted a couple of audiologists who told me it wasn’t a big drop in hearing but suggested higher powered hearing aids. I didn’t know about that as I thought the hearing aids I had were pretty awesome. Between not being able to hear clients and clients not returning since I was boring, no conversation person topped off with phone issues, I quit.

Not long after that, I attended a banquet in a room with high ceilings and lots of windows with outdoor carpet on the floor. I did fine at first but as the place filled up, I started drowning in all the noise. Music played and people talked a little louder so the music went a little louder which made people talk just under a shout.

I cold barely hear the person sitting next to me let alone the anyone sitting across the table. A few nice people tried to include me in conversation but I understood so little, I spent most my time shrugging my shoulders and confessing I was half deaf. I stared hard at other people’s mouth trying to keep up and it hit me, I was trying to rely on lip reading. All the noise left me deaf. This revelation turn me upside down. The more upset I got, the worse I became at lip reading. As I struggled for any scrap of sound to form words, the more I heard the collective roar of the crowd. I was deaf in this situation.

After that, I started paying attention to noise and acoustics. Looking back at that salon, I saw why I had so much trouble. Noise bounced all over. I worked near the rock shampoo wall in the middle of the salon so I caught all the noise. Unconsciously, I chose the middle of rooms hoping to hear more and hear more I did. When the girls walked across the floor in their high heeled boots, their footsteps reminded me of gunshots (basement beneath the hard wood floor). Every little noise was amplified in the gorgeous salon making it an acoustic nightmare.

Sometime later I attended a large workshop in a hotel banquet room. I prepared in advance in various ways (making sure speakers wore my FM system) but I feared the acoustics of the room. As I walked into another large room with high ceilings and huge windows, I thought, “oh no, another nightmare.” I sat up front and when the speaker started talking, I understood almost everything. My worries fled and I took heart looking around. I noticed the windows all had drapes lining them and sheer curtains all the way across letting in some light but soaking up sound. The carpet beneath my feet was more lush than the banquet I attended some months before. I relaxed and enjoyed my conference.

After that success I became brave and decided to attend another workshop. This one was held in a small room with concrete floors and white boards across 2/3 of the walls. The walls didn’t go all the way up to the ceiling, leaving about two feet exposed to outside rooms and other noise. The ceilings were open, artfully showing the air ducts and when the air-conditioning kicked on, the room flooded with harsh static that filled my hearing aids, like wind over the cell phone. I understood maybe a quarter of what was said in that workshop and no way could I participate in any classroom discussion.

It was a three night series workshop and each night I went home to a glass of wine sniffing back a tears. I did everything else right, spoke to the presenters before class telling them I couldn’t hear well. After introducing them to my FM system,  I asked for outlines to better follow along.  I even asked if they could face my way as much as possible. Still, I didn’t hear enough to get what I paid for, and I missed valuable classroom feedback. Acoustics defeated me once again, leaving me nearly deaf.

Once again I’m working as a hairdresser. The tiny salon I work in is not the best acoustic situation but it being a one person salon, I control my environment enough to make it work. It has tiled floors and a lot of bare walls along with a great big mirror. Sound bounces around but I leave the radio so low, hearing people barely hear it. I can turn off my blow dryer and ask for a repeat.

As soon as I build up clientele, I have ideas on how to make it better. Sheer curtains over the window. A rug near the door. Some sort of cloth hangings for the wall and maybe a plush couch in the adjoining room. I will add a tall bookcase to make a book swap. All those things help soak up sound.

I never thought noise and deaf belonged together but it does. There’s loud concerts, loud tools, loud vehicles and crowded, loud rooms. Noise can make for deafness, even for “hearies” in certain situations. I do not understand how normal hearing can fade so much of that to the background and I’m jealous.

 

Here are some of things which make for bad acoustics:

  • high ceilings
  • bare floors
  • any hard surface
  • windows left bare
  • nothing on the walls
  • hardwood or plastic furniture
  • being in the middle of a noisy room
  • background noise

 

How to fix bad acoustics:

  • curtains
  • blankets
  • wall coverings
  • bookcases (good news for those of us who love to read)
  • rugs/carpet
  • plush furniture
  • pillows
  • table clothes and place mats
  • going to the corner of a room to talk
  • turning off as much background noise as possible

 

Sometimes I’m accused of selective hearing and other times I’m amazed and what I hear and then later don’t hear. Maybe it has more to do with the environment and acoustics than I ever thought.