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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.

5 thoughts on “Tolls of Hearing Loss by Pearl Feder”

  1. ((((((((((((((((I’m so sorry)))))))))))) That’s almost exactly what happened to me the year before I got my cochlear implant. I was very borderline before that, but within eight months I lost hearing and speech discrimination, and my ability to tolerate amplification from my hearing aids so that certain sounds were intolerable. Everything was shrill. People sounded like they were yelling even though I couldn’t understand them. It was so painful and awful.

    You ARE going to be OK, Pearl!

  2. Hello Pearl,

    I wish I could say there was a quick fix. But I understand some of what you have been through. I know in the last year I lost a good percentage of my hearing. I had lost a hearing aid and figured it was all because I didn’t have two aids like I needed. But a few months back I got two new to me hearing aids, and found out my hear had gotten worse.

    I have struggled in the last year with what do I do from here. There are adjustments with communicating that can be done. My daughter and I text each other often when sit next to each other. But not everyone I have found is willing to adjust as quick as I need to communicate with me.

    I wish you the best and hope you find the strength make it through this tough time.

  3. Hi pearl, I am going through the same thing you are…… I am losing my hearing due to. Ménière’s. I relate to every thing you said, the anxiety some days of waiting for it to happen are so stressful I don’t want to get out of bed. Hang in there, enjoy the good days. You will have the strength to adjust to this life changing but not life ending event!

  4. Pearl, my heart goes out to you. It’s really scary to realize you’ve lost more hearing. I can relate to so much of your story — hoping it was just an issue with your hearing aid, and wishing they could just give you a better/stronger aid to make up for the difference.

    You sound like you have a good, positive attitude and I think that’s just so important when you’re facing challenges like this. I had 2 separate instances of sudden hearing loss, about 15 years apart, and the second one left me profoundly deaf. When it happened to me, I spent a few days just grieving — crying and feeling tremendously sad. I felt like I needed that. Then I picked myself up and thought about how I was going to deal with my new ‘normal.’ I ended up getting bilateral cochlear implants, and I have the world of sound back again.

    In the meantime, keep doing what you’re doing — minimize your stress, take things one step at a time. You will make it through this and come out stronger! *hugs*

  5. Pearl, I wish there was something that others could do to make this easier for you, but the truth is you just have to go through it and figure it out yourself. On the bright side, it does, and will, get better.

    I’ve been on this roller coaster ride for more than 4 decades, and with progressive hearing loss you find a wrench has been thrown in your gears frequently. With each hearing dip or realization that I can no longer hear what I previously could, I got angry, depressed, frightful that what I used to understand, I no longer could, sad, I went through a grieving period and finally landed flat on the floor. Whether you stay on the floor is up to you. The good news, for me, always has been that I came back stronger, smarter, and more confident that I ever dreamed. You know I’ve never found benefit with hearing aids, and I have almost no hearing left in either ear, yet I live a life, and it’s a good life. That’s valuable.

    I shared a quote this morning on the SayWhatClub Facebook page, and it was for you: “If you really want to do something, you’ll find a way; if you don’t, you’ll find an excuse.” ~~Jim Rohn

    You simply have to look at losing your hearing as an obstacle to figure out your way around. No excuses. It’s certainly not going to be easy, but it definitely is possible. I love you, Friend. ~~Michele

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