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….

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2 thoughts on “SAY WHAT…

  1. As one of your “teasing brothers”
    I always love reading your blog…. they are quite heart warming.
    And speaking as the husband of someone who’s life was quite possibly saved by a transplant (albeit an entirely different type of transpalnt) I say put your name on that transplant list…you realize how precious it is to hear your children’s laughter….make sure you hear your grandchildren’s as well

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