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Entries categorized as ‘Relationships’

Deafaphobia? Is it them or us?

October 5, 2009 · 8 Comments

I have a bilateral sensorineural hearing loss.  We hear those words often but they mean different things to each individual.  I am only aided on my right ear because my left ear is totally unfriendly to any speech discrimination.  Or should I say, speech discrimination is unfriendly to my ear?

I once tried an aid on my left ear, many moons ago, with no affects.  I wear my aid on my “good” ear from the minute I wake up in the morning until I go to bed.  The only time I usually remove it during the day, is when I get jock itch in my ear.  Since last Thursday, I’ve developed extreme pain in my ear and on the crest of the helix.  You know, that part of the ear that has nada to do with hearing.  It’s where u would stick the earmold under that little sucker.

Today is the first day I could not wear my hearing aid due to extreme pain and let me tell you, it was a real eye opener for me and the people around me.  I have never gone this many waking hours out of the house without my aid.  First off, I found the people I work with not able to deal with me.  WOW! Now for the surprise, these are my teammates and we work with the hearing impaired and deaf population and their families.

I guess it’s true when we say, you don’t know what it feels like till you’ve been in my shoes.  Hearing people really do not understand deafness, let alone a hearing loss. Maybe it’s their fear of the unthinkable.  It immobilizes people when we discuss our unability to hear.  The very idea of not being able to hear a discussion, a disagreement or the hearing persons fear to communicate with us because WE cannot hear them.  So afraid to initiate a strategy to communicate with us for fear of catching what we have. 

Then, I encountered the people in the stores, on the streets and the dangers of walking in between cars to cross streets. Naturally, I can’t use my phone, which means, I can’t communicate and others can’t communicate with me, which means I’m going to be one pissed woman by the end of this week.  I’m very social and love to communicate.   The I’m in your face type of person I guess.

Lastly, there’s my family.  Everyones has their mouths wide open to over emphasize what they want to say to me.  It’s so weird and it’s also pretty scary to actually not hear the voices of the people I love.  I guess I’ve taken the assistance I get from my aid for granted.  And friends, co-workers and family around me, have taken my hearing loss and wearing an aid for granted.  I guess now they realize I am not hearing anything and that I am truly hearing impaired though one cannot officially call me deaf.

Don’t you just love when a hearing person says, wow, you have such great speech for a person with hearing loss?  It blows my mind.

Oh by the way, my Doctor really impressed me today. The man actually took out paper and wrote the questions he had for me and had me answer them (verbally of course).  He did not want me to put my hearing aid on because of the pain.  Oh and by the way, this was my Internist not my ENT. 

Here’s one of the reasons I dislike ENT Doctors.  Many years ago, during a phase where I refused to be aided, I went to an ENT Doctor because I was having terrible sinus problems.  As soon as I tell him I have a hearing loss he calls in his audiologist to do a hearing test.   I showed him my audiogram which was taken several months ago by my audiologist. But no, he wants one from his office.  I refused.

This ENT Doctor proceeds to look in my ears after I tell him about my hearing loss, show him my audiogram and explain that I have no speech discrim in my left ear.  The man looks into my ears, looks very seriously at me and says, I don’t see why u can’t hear out of that left ear, it looks perfectly fine.  With that remark said, I stood up, said thank you for your time and left (as fast as I could).  I decided from that moment on, that people, even many well meaning and not so well meaning professionals in the field, do not understand us.  It’s as if they have deafaphobia, the unimaginable! the unthinkable! 

So what is my point?  I raise my glass to all of us for holding our heads up high, for not allowing this to drag us to the grave and for continuing to educate those who hear.

Categories: Deaf · Hard of hearing culture · Hearing Loss · Hearing aids · Lip Reading · Relationships · aging · audiogram

TELL ME WHAT YOU HEAR, AND I’LL TELL WHAT I SEE

August 25, 2009 · 7 Comments

We all need a friend.  Someone to share thoughts with, laugh with, cry with.  Someone who will take the time to be what we need, and who can expect the same from us.  That might be especially true for those of us who face each day not hearing all we used to hear, all we want to hear, and all we need to hear.  I am lucky, I have such friends.
 
I began losing my hearing in childhood and consider myself lucky in that I can still remember what many of the things I can no longer hear sound like–at least I thought I was lucky until I came across someone who is “Culturally Deaf” (her label) and has tried to convince me that never having experienced sound in the first place is better.  Her thinking, you can’t miss what you have never had.  I guess we all gauge luck in our own way?  And that’s okay–though I will admit that knowing what I am missing makes me sad on occasion, but would I rather have not experienced sound in order to avoid the sadness of loss?  I think I’ll stick to the “It’s better to have heard and lost, than to have never heard at all.” way of thinking. 
 
And because I have the memory of sounds I no longer can hear, I draw on that memory and am very protective of it.  Sadly, as the years turn into decades, I find some of those memories have faded, but luck is the lady again.  I have people in my life who help me fill in the gaps of faded memory, and take the time to describe what I am missing–I’ve learned to ask.  I’ll admit, those times are never often enough to suit me, but I’ve learned to treasure the occasions when they happen.  In return, I try to describe the things I see for those who describe sound for me.  Things many people miss.  Things only a person who lacks hearing sees.
 
Several years ago I was in Texas visiting my elderly aunt.  While there, I walked in the mornings, often earlier than the rest of the world was up and about, and on those walks the same friend came to mind as I saw things I wanted to share with him.  At the time, this particular friend seemed convinced life was too serious, he was too old and too devoid of dreams, and too busy to take pleasure in much of anything.  So I sent him a letter to tell him of things I saw on my walks.
 
Dear Friend,
 
I’ve been walking early in the mornings during my visit here in Texas, and on the first morning I found a parrot feather.  It is gray with a bright green on the edge.  It was so pretty I couldn’t pass it up, as with most things that please me.  As I bent down to pick it up, I found myself wishing you were here to see it.  I am not sure why I thought that, for I wasn’t thinking of you until that moment?  Maybe I just want to share my happiness with you?  The happiness of simply being mindful of things.  The happiness of looking at the world in the same way that I did as a child.  Maybe that is what we are supposed to be for one another?  I can share with you the things I see, and you can share with me the things you hear?  I am bringing the feather home with me and am saving it for you.  It represents all of the things I see that I want to share with you.
 
Tell me what you hear.
Tell me of the songbirds serenade.  The symphony of the morning.
Tell me what a chorus of crickets sound like in the evening.  Help me not to forget.
Tell me of the new music you hear and appreciate.  What it means to you.  How it touches your heart.
Tell me what you hear.  Tell me what I’m missing.
 
And then, I will tell you what I see.
I will tell you of the things that others miss.  Things only a person who lacks hearing sees.
I will tell you of the beautiful sunsets on the beach.  The dance of color in the sky.
I will tell you of the storm clouds on the horizon.  How they are magically illuminated by the setting sun.
I will tell you what I see.  I will tell you what you are missing.
 
Tell me what you hear, and I will tell you what I see.  Maybe that is the purpose of our friendship?
 
Take the time to share your view of the world with someone you consider a friend, and be bold and ask your hearing friends to help you experience what they hear.  I can’t think of any better definition of “friendship”.

Categories: Deaf · Hearing Loss · Relationships
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