Tag Archive: Deafness


A hard of hearing life would be isolating without today’s technology.  I can only imagine it as
lonely.  I remember what life was like before computers.  I lived in a small, desert town of about 15,000 people and there were no hard of hearing resources available locally.  It was an hour and a half in any direction from a big city.  I traveled out of town to get hearing aids and I went out of town again to get them adjusted.  In my late twenties, I was the only person I knew with hearing aids except for the snowbirds who came to town in the winter.

by Chelle George

Coping with hearing loss meant faking it, that was my only strategy back then.
I tried being hearing because I didn’t know what else to do.  There were so many conversations lost during those years and missed connections too.   It was a poor strategy.

Along came the internet and America Online.  For months, I had to call long distance to dial up so I was limited being online but oh how I loved it.  It opened up a new world for me.  This was the first place I could socialize without struggling to hear.  With the internet, I no longer felt like a social idiot.  All the words were right in front of me to see.  It was beautiful.

It took some months before our small town had local internet service and right away I signed
up.  I had unlimited internet time at long last.  I was overjoyed and spent every spare moment online, chatting, emailing and surfing the web.

After a year of playing around online, where I never had to admit I was hard of hearing, I
looked into hearing loss.  The first sites I remember finding was SHHH (Self Help for the Hard of Hearing) and ALDA.  There wasn’t much on their web sites except some basic information and a list of chapters.  The nearest one was an hour and a half away which wasn’t feasible for me.

Keeping up the search, I found the Say What Club.  I joined and learned so much from those good people.  Faking it was bad they said so I worked on being honest about my hearing loss. There was a whole world of assistive listening devices (ALD’s) out there. The phone company
provided voice carry over phones and I signed up for one. I learned about resources such as vocational rehabilitation and the disability center at my local community college.  I was not alone
when I had the Say What Club with daily emails of strategies, support or even the chance to rant or cry about our predicaments.  I had friends from all over the country who understand what it was like to be hard of hearing.

Without the Say What Club being available to me online, I would have been years behind in
technology and awareness. Most likely, I wouldn’t have the courage to be upfront about my hearing loss.

The next big miracle was texting.  It started out a teenager activity and my kids were among those who texted.  One night I had my daughter sit down and show me how to do it. She was patient and I learned.

The problem was, I seemed to be one of the few adults who texted.  How I wished my friends and  family members texted back then.  It was so much easier and quicker to communicate, in my opinion.

A few years down the road, other adults began texting.  My mom was among the first and it elevated our communication to a daily thing.  A couple times a day we would text one another back and forth.  If a whole day went by without one of us texting, we text, “Everything ok?”   It was great having my mom at my finger tips and our relationship grew.

Now texting is common.  Many friends and most of my family texts.  Better yet, I had bosses
and co-workers text me.  Airlines, my tax person and my own phone company have started using texting.  Most people say yes to texting when I ask them.

My phone doesn’t ring much. Instead it buzzes with text alerts.  I discourage phone calls with most people.  A type of anxiety builds up me in every time I think about phone calls.  Even my voice mail tells people to text me instead.  (That has gotten rid of unwanted sales calls!) I loathe phone calls.  On the flip side, my phone is near me most of the day and I don’t go anywhere without it.  The buttons are worn and friendly from making words on the little screen.  I can’t go without texting anymore than I could go without email now.

I upped and moved to Salt Lake City almost three years ago, away from those small desert
towns. Surely the big city would hold a SHHH or ALDA meeting some where.  A quick internet search showed me SHHH had changed to HLAA (Hearing Loss Association of America).  There was HLAA chapter meeting once a month at the local deaf and hard of hearing center.
Not only was I lucky enough to find a meeting with others like me, I landed at the Sanderson Center for the Deaf and Hard of Hearing.

HLAA meetings were advertised on their local web site with CART (Communication
Access Real Time).  I heard about CART many years before with the Say What Club but never experienced it.  The thought of it was exciting.  It was pure joy to walk into my first meeting
for HLA at the Sanderson Center and see the whole meeting captioned. I was elated.

Every meeting I go to at the Center has CART available if I or others request it.  It was another miracle as my hearing continues to plunge.  I can go to three hours of meetings there (or a presentation) with CART and walk away energized.  Two hours in a social situation without CART or any other accommodation and I leave exhausted.  I go the Center every chance I get.  Every time I walk in the doors I feel the burden of the hearing world lift off my shoulders and I relax.

I’m glad I live when I do.  Technology has been keeping up with me.  I can’t imagine how separated from the world I would be without it.  I try imagining what life would have been like for the hard of hearing and deaf 100 years ago with no technological help… the only words that come to my mind are  isolated and lonely.   Technology has been keeping up with me.  I can’t imagine how separated from the world I would be without it.  I try imagining what life would have been like for the hard of hearing and deaf 100 years ago with no technological help… the only words that come to my mind are  isolated and lonely.   Technology continues to improve and
expand.  I’m eager to see what comes.
next.

This started out to be a simple post to Connect, my home list on the SayWhatClub, but grew into something more upon receiving some news that was expected, but, nonetheless, sad. I decided to post my words here instead.

It all began with my watching a wonderful TED Talk given by Dave deBronkart, entitled, “Meet e-Patient Dave” and wanting to share it with others. If you click on the link, make sure to turn on the subtitles, found underneath the pause/play button, to the right of the words: “Subtitles Available in:” Choose your language from the drop-down menu, as several different languages are available.

I’m a big fan of TED Talks, as I find them inspiring and informative, but I also like them because they are caption/subtitle friendly. However, patience may be required, as it does take a few days for newly posted TED Talks to be translated/subtitled, since those adding this feature are volunteers, but usually a talk is available in English in just a few days.

At first glance, this talk, given by a man diagnosed with kidney cancer, might not seem relevant to hearing loss, but it is very much so. Dave’s emphasis on taking charge of what’s ailing you, and the need to search for answers beyond those that your doctor provides, is far-reaching. Patients ARE the most under-utilized resource in healthcare, and conferring with other patients (referred to as “the power of patient networks”) who have ‘been there, done that’, can lead you to some of the the most effective and cutting edge treatments available. It’s amazing, the detailed information that e-Patient Dave found on the patient networks he came across. Information that cut through all of the less aggressive and less successful treatments that, had he tried, probably would have meant a quick demise. We can all benefit from adopting e-Patient Dave’s attitude and forcefulness where our health is concerned, and hearing loss is a health issue.

Speaking of “Patient Networks”, I consider the SayWhatClub to be one, as we pass on valuable information about hearing loss straight from our own experiences, but we also spill over into providing the emotional support and understanding that a person can’t find in a hearing world, among hearing people. Not even those who love us most know what life is like for us, unless they have a hearing loss themselves.

Dave also asks the question “Why is it that iPhones and iPads advance far faster than the health tools that are available to you to help take care of your family?”, and I found myself asking this same question in relation to being able to access information on finding the right technology and the right person to apply and program that technology to treat hearing loss. Why is it so hard?

One of the last stories Dave tells is about Kelly Young, a rheumatoid arthritis patient (Kelly’s blog is RA Warrior. I’ve looked at it briefly and it’s a wonderful blog!) who coincidently has a daughter who “wears powerful digital hearing aids”. A large percentage of RA patients (40%) have no visible symptoms (sound familiar?  Hearing loss is the invisible disability) which makes it hard to track the disease, causing some doctors not to believe a patient when they say they have pain. Kelly found, through her online research, a nuclear bone scan that can reveal inflammation, so she had one done. The radiologist report came back “No cancer found”, but that’s not why she had the scan, so she asked her doctor if the report could be read again, based on her reasons for requesting it. After some back and forth and repeated requests, her doctor fired her, saying “If you don’t want to follow my instructions, then go away.”, which launched Kelly on a quest to help others receive better care, to take charge of their own data, and to insist on having their thoughts and wishes heard and considered by the doctors who treat them. I’ve had my own bad experiences with audiologists and and doctors, where I’ve questioned their instructions, asked about things we might try, and made suggestions that I thought were reasonable, only to be looked at like I had two heads.

“Let Patients Help”, the end message of Dave’s talk, is a movement I need no encouragement to join, as more “warriors” are needed to take their own raw data into their own hands and make themselves heard. Who is more motivated to make a difference in their disease, disability, or course of treatment than patients themselves?  Learning to be responsible for ourselves and seeking to make tools available that will allow us to have more knowledge of those things that directly affect us is always a good idea, no matter what ails you.

The last point of relevance I considered… if you look at the video in the right frame of mind — times other than when you are down in that dark place of panic at not being able to function as you once did. A place where nothing seems more frightening than the inability to hear. A place that renders you hopeless at finding a way to live your life with little or no sound, making your loss of hearing seem the worst thing in the world that could happen to you – and apply it to the whole scope of what might cross your path in life, it can put hearing loss into perspective. Though, you really can’t compare adversities, because what is hard for one person doesn’t make what’s hard for another any less valid or troubling. However, we are able to look at Dave’s disease, one that makes him wonder “What’s my mother’s face going to look like on the day of my funeral?” and if he’ll be around for his daughter’s wedding, and take a bit of comfort in knowing that our hearing loss doesn’t threaten, in most cases, to take our life in a relatively short period of time, if at all. Or does it?

Many do allow hearing loss to take more than simply their hearing, leaving them isolated and low functioning, but it doesn’t have to be that way.  We have a choice in the matter, and, in my mind, to live less of a life than you would if you had your hearing, borders on criminal.

In reading the “about the author” section, of Kelly Young’s blog, I learned of her purpose in becoming a warrior, and she also shares her personal information, point of view, and passion.  Last, she gives us her private information, which reads: “Kelly lives in Central Florida with her husband and five children. Typically, a list of hobbies and activities would be given here to define the author’s life.  Kelly’s list has been confiscated by RA. (It formerly included various sports and crafts.) Instead she now seeks less tangible ways to define herself: She is patient, honest, and kind.”

Hearing loss doesn’t have to confiscate one thing more than you let it.  Life is so much more than what can be taken in through our ears.  The sights, smells, feelings, and tastes of the experiences that you open yourself up to are many… and that’s the KEY: Remaining open! Constantly fighting the temptation to close yourself off by placing needless limitations on what you can do. It’s not an easy task, but personally, I feel a responsibility to constantly push back against those things that threaten to isolate me. I feel compelled to do everything I can within my ability. To do less seems a slap in the face of those whose disease or disability takes more from them, as on this day.

For Brian, December 20, 1955-July 29, 2011, who fought the good fight and will be sorely missed by all who knew and loved him.

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