Monday, March 11, 2013

Shouting Won't Help...

According to the World Health Organization, hearing-impaired people number 275 million worldwide.    I began to lose my hearing in my mid-twenties.   By the time I was thirty, I was down 40% in my left ear.    At 40 I had lost 60% in my left ear and had started a slow loss in my right.    By then the accompanying tinnitus and severe vertigo had gotten bad enough to effect how my brain processed sound and light. After passing out four times (once in a yarn shop), I agreed to a chemical labrythectomy (thus disabling the likely culprit, my left endolymphatic nerve).    The procedure cost me the remaining hearing in my left ear (but, functionally speaking, gave me back my life).   I will be 51 in June.  My left ear is fully deaf, but has yet to stop ringing.   While I still get dizzy, I only rarely suffer from vertigo.   The hearing in my right ear is declining at a much slower rate than my left but eventually that will be gone too.

When this journey began, as a way of facing the possibility of going deaf, I read tons of books on living in a deaf world.   What makes "Shouting Won't Help" by Katherine Bouton different from the books I read then, is that it is not about being deaf.   It is about going deaf and while the experiences can be similar, they are not the same. 

Ms. Bouton's experience was different in some of ways than mine.  However, much of what she recounts is very familiar.  The embarrassment of having to ask people to repeat themselves over and over.   Being made to feel like your lack of hearing and/or understanding what you do hear (sometimes we can hear that you are talking but are unable to make out the words), is something you are doing to them.   Then, there is the anger at being treated like you are stupid just because you can not hear and the ever-present fear that it might be true.  

Hearing loss is an invisible disability.  I do not use a cochlear and am not a good candidate for hearing aids.   I speak well and, with a strong voice to my right, can even still sing.   Thanks to a combination of speech reading, what my right ear has to offer and context, I compensate very well (so says my audiologist).  However, ambient noise and acoustics can make or break me.   Once at Disney, while being seated for Epcot's Candlelight Processional,   I asked to sit within sight of the ASL (American Sign Language) interpreter .  The rather nasty usher told me to prove I am deaf.   Really?   As I understand it, only my autopsy will tell the whys and hows of my emerging deafness and I am not ready to go there yet.   

"Shouting Won't Help", is at times funny and sad.    Along with detailed information on hearing aids, cochlear implants, and assistive listening devices, Ms. Bouton goes into the whys and hows of age and noise related hearing loss.    She also shares tips for talking with the hearing impaired that, if you yourself are hearing impaired, you may be tempted to copy and hand-out.  In much the same way that  "Quiet" did, "Shouting,,,"  left me feeling more comfortable with my own normal.   Not only do I feel less isolated in this never quiet place, but I feel braver about asking for what I need.    

Given the statistics, it is more than likely that you or someone you interact with on a regular basis is deaf or hearing impaired.   Do yourself and them a favor and read this book.   Then you can do what I did, and ask your hubby to read it too.

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