SAY WHAT…

It’s no secret – I’m severely hearing impaired or a better term, I have a hidden disability.  Yes my condition is a disability, however, to my  disadvantage I look totally normal.  I can walk, run, jump, see and to a stranger, it appears that I can hear.  Appearances are not necessarily reality.  My hearing loss is called sensorineural hearing loss and the root of my hearing loss lies in the vestibulocochlear nerve, the inner ear or central processing centers of the brain.   Sensorineural hearing loss is caused by abnormalities in the hair cells of the organ of Corti in the cochlea.   Simply put, I’m severely hearing impaired with a very good chance of waking up one morning to be completely deaf.  Cause of this impairment can be from loud noises, infection or genes and in my case the condition runs in my family.

I use the term hidden disability because it describes my situation.  People don’t necessarily notice my hearing aids (even though I never attempt to hide them) and even if people notice the hearing aids, there is no way for a stranger to understand the implications of my deafness.  Approximately eight years ago while using the phone at work, suddenly the sound of the person’s voice on the other end of the connection sounded hollow and as if I was talking through a tunnel.  After a series of in-depth tests it was revealed what I feared.  My hearing had deteriorated and there is no way to know if and when my hearing will completely leave me.   The tests also revealed that I am a candidate for a cochlear implant.   I haven’t signed on to be on the waiting list for an implant simply because the procedure scares me and it’s an adventure into unknown territory.    Right now I get by with the help of hearing aids, lip-reading and at times I piece  words from a conversation together like piecing a jigsaw puzzle.

I’ve been blessed to have so many wonderful people in my life, family and friends, but it is frustrating how a deaf or severely hearing impaired person can be treated.  I mostly ignore this treatment, but I have to admit at times it’s hard.  People treat you like you are lacking in  intelligence, or worse, like you don’t exist at all.   Sometimes this treatment isn’t from strangers; it can be from family and friends.  Lack of understanding or ignorance is at the root of this treatment and I try to remind myself of that every time an incident occurs.

A long time ago before I was married and  before I met my husband – I was in a relationship with a man for a few years.  One time over coffee a girlfriend says to me ” I’m really surprised you have a boyfriend.”  I was somewhat confused and I asked her why this would surprise her?  She said “because of your deafness, I’m surprised that you have found a man who would go out with you especially with your condition.”   It’s very rare that I am silent,  but I was stunned into silence.  My first reaction was anger and I thought “does she think that you need to hear to be loving, sensual, sexy and desired.”  “Believe me honey you don’t need to hear to be all of that and more.”   Just as I was about to blurt out something nasty and full of anger, a thought occurred to me that made  me feel sad for her.  She was relating her own fears, her belief that you have to be perfect in order to be loved.  Instead of an angry response, I said “I feel sorry for you if you think you have to be perfect to be loved, you don’t, that’s not how real love works.”  The effect was stunned silence from her.  She never said anything like that ever again.

All my life I’ve dealt with inconsiderate comments – something I’ve accepted and usually I use wit and  humour to deal with these comments.  I am at ease with my hearing loss and can laugh at some of the humorous situations that I get myself into.  I grew up with two brothers who loved to tease and what better person to tease than the hearing impaired person.  Their teasing was never about being condescending, it was about loving and accepting me as a whole.    However, in the real world people are not like that.   I can’t tell you how often, in a group setting, where I encounter the most difficulty, I’ve asked a person to repeat something and they either ignore me or wave me off like I’m not there – makes me feel left out and isolated.   When I confided at work that my hearing had become worse making phone use even more difficult a co-worker said to me  “you should apply for disability.”  My response was “disability is  for people who can’t work, I am fully able to work.” Her comment lacked empathy and after I had time away, I realized, again this was about her fears not my disability.  These types of incidences happen to me on a daily basis and I fight very hard not to feel isolated, not to withdraw myself from society and remain social.

The one positive aspect I can take from my lack of hearing is I know who my friends are, the friend who supports me whether I hear them or not, the friend who knows when I’m not hearing at a party and fills me in as soon as she gets the chance, the friend who uses my choice of communication (e-mail, facebook or skype) rather than phoning because she knows how difficult the phone can be, the friend who whispers into my ear scene by scene of what’s happening in a movie while at a theatre so I don’t miss any of the story, consequently totally screwing me up and I’ve never had the heart to tell her that I didn’t hear a damn thing she said (thank God for movie theatre closed caption devices) and the friend that takes the time to make sure we get together and purposely chooses a quiet restaurant because she knows I don’t do well in loud settings.

So Many blessings in so many areas of my life, a prayer of gratitude every day.  My morning routine is to get out of bed walk over to my bureau pick up my hearing aids and place them in my ears.  Within that split second between putting the hearing aids in my ears and turning on the device I wonder “will I hear today?”  The moment I hear sound I know it’s  a good day because today I will hear my children’s laughter, hear my youngest son singing along to the radio in the car, hear my husband’s constant jokes and teases throughout the day and  there are days if I stand very still outside amongst the trees and a bird is close enough, I may hear that bird chirping knowing that today could be the last day I hear her beautiful song.  Below a story I can relate.  A story of two girls and how they get through severe hearing impairment.  You must choose to see yourself as beautiful  and immerse  your soul in complete acceptance in this complex world – the choice is really the only choice someone with deafness or severe hearing impairment can make because any other choice means going in the wrong direction as in one of these girls….

THERE WAS A TIME

There was a time

when

I would fall asleep

to the sweet lullabies

of

 frogs and crickets

the songs of these creatures would

lull me into a dream state

and in the morning I would awake

to the beautiful melodies

 of my

feathered friends

each morning I would stir

in my sleep and pull the covers

over my head

 as my feathered friends were persistent and

aroused me from my dream state

much to early

now when I go to sleep

there are no sweet lullabies

of the frogs or the crickets

that beautiful sound has been replaced

by a freight train running through my

head

replaced by the terrible racket called tinnitus

that loves to cause ringing in my head

and is especially loud

when all the world is quiet

and in the morning

I now

 awake to the sounds

of

 swishing, ringing and banging

how I miss

the beautiful lullabies of the frogs and the crickets

and the beautiful melodies

of my

feathered friends

momwhearingloss

QUIET AHHHH!

Last week I finally got my new hearing aids.  My old ones broke and since they were 9 years old I figured it was time to replace them.  I have sensorineural hearing loss which is nerve damage in the inner ear – both ears.  I started to wear hearing aids at the age of 19 but I should of worn hearing aids through high school.  It’s a wonder I made it through school with the amount of hearing loss that I had at that time.  In the last 10 years my hearing has deteriorated and I’ve been told that one day I could wake up and not hear a thing!  I don’t spend a lot of time worrying about that day, as I enjoy life as is right now.  I bought my last pair of hearing aids right at the time that digital hearing aids were all the new rage.  I had an extremely difficult time adjusting.   Everything sounded so much more precise and crisp to me.  It drove me a little batty so I had the hearing aid specialist program the aids so sounds were a little softer, so I didn’t hear quite as much but hopefully heard all the important things.  Hearing aids typically last 5 – 10 years.  As you can imagine in 5 – 10 years the difference in hearing aid technology is astronomical.  When I got to work with my new hearing aids I could hear every hum and rattle of the place.  After a day of listening to things that you don’t really need to hear, I found relief when I got home by removing my hearing aids –   put my head back and ahhh quiet.  Closed my eyes and just relished in the quiet – couldn’t hear any humming, couldn’t hear the kids, couldn’t hear the tv – just me and quiet!  It’s nice to slip out of reality every now and then and just go to my own world of quiet, where I can pick and choose when I want to hear.  I’m sure most people at time want to have the same experience and they can with ear plugs – just try it and you will find yourself going ahhhh quiet!

STRANGE DAY

Today was Sunday, certainly not a day of rest as they say no rest for the wicked.  My youngest son had a 6:00 am practice this morning so the household was up and about just after 5:00 am.  Once my husband gets home from this practice, he gets ready for his own hockey game and he grabs one son and goes one way and I grab the other son and go to church.  After church and a quick bite we all head over to the rink to attend my oldest son’s hockey game.  We got to the rink 45 minutes early so I had time to run some errands – off I went to the mall to pick up the few things I needed. The mall that is closest to the rink is also close to where my mother use to live and my mom use to walk over to that mall day in and day out to hang out with her friends in the food court drinking coffee and talking.  There are a lot of senior citizens in that area and she knew them all.  About five years ago my mother was diagnosed with Alzheimer’s and three years ago she passed away due to complications of this awful disease. I haven’t been to that mall since she died.  As I’m walking through the mall I was observing all of her old haunts and everywhere I turned I saw her there, sitting in the food court with all of her friends, I swear she was the woman in the red jacket and the grey hat but when I looked closer it wasn’t her.  This group of woman were so engrossed in their conversation and then someone must of cracked a joke and they all laughed.  I swear I heard my mother’s laugh.  As I walked by her favourite store, Suzanne’s, I couldn’t resist going in for a browse, as I was looking through the racks, I pictured my mom in this blouse or that sweater or that skirt and then I saw a grey haired head bobbing in between the racks and I took a good look because I swear it was my mother.  The lady working at the store came by and asked if I needed any help and I wanted to say “did you know my mother?”   “She loved your store”.  Of course I just said “no thank you, just looking” but I thought she must of known my mother, mom spent so much time in here trying on all kinds of clothes, getting the sales ladies to help her then buying the item only to take it back the next day.  I’m sure she drove them crazy but she was always friendly and had this great laugh.  Today was a trip down memory lane, I could feel my mom everywhere I went today and just when I think I’ve moved on to the next chapter of my life it hits me – I miss my mom, I miss her laugh, I miss her jokes, I miss her advice even though I didn’t want it, I miss the way she loved my children, I miss the way she kidded with my husband, she was so much a part of my life and now she’s gone.  Not truly gone she’s still here in my heart and soul and she was definitely in that mall today and as I left the mall under my breath I said – “see you later mom have fun!”