Sunday, April 5, 2015

Being Hearing Impaired - My Rant

Hearing impaired people use 50% of their daily energy on communications, people that can hear use 5%.  No wonder I'm so tired after work, it's a constant struggle to track what is going on in conversations.  Not only in meetings with crappy speaker phones, but in hallway conversations.  I feel like I miss a lot of nuance that is often key to a conversation.  I also miss other important snippets, like when meetings are scheduled, and often write things down wrong.

My hearing loss is mostly in the range of human speech.  At this point I think I can hear the voices of about 15 to 20% of people that I talk to on a daily basis.  I should correct that.  I can "hear" most everyone but I typically can't understand what is being said.  Along with hearing loss comes impaired speech discrimination.  Even with today's technology, hearing aids are not like eyeglasses, they don't 'correct' hearing as such, they just amplify sounds and don't make speech more understandable.  It's like having the car radio on a station that has a lot of static.  You can turn it up but you can't understand it any better - it's just louder static.  

I was on a solo road trip recently which was heavenly because it was a break from my constant struggle to hear and understand. I was either cocooned in my truck cab or out alone in the desert on my bike.  I truly needed that break.

Here in our little town of Lander, Wyoming I have a set world.  I know which people I will likely avoid because I can't hear them, depending on the day and whether I feel up to it or not.   I often wonder if people think I'm snooty...

Often times in social situations, I don't ask people to repeat something that I've missed, simply because the moment has passed. And I miss a lot, especially when people are joking around or say something to the side.  But - I try to smile and nod like I actually know what's going on.   I know, faking it is not the best plan, but I am just completely burned out lately.   And embarrassed that I have to ask five times or more before I get something.

My hearing impairment started when I was young with multiple ear infections.  I had tubes put in my ears in grade school and was amazed after the procedure when I could hear sounds such as the water running from the faucet.   But even after the tubes were put in, I still flunked the standardized hearing tests, year after year - all through grade school.  

About three years ago I had my hearing tested and bought hearing aids. The audiologist said that it would be life changing for me.  It's funny but with hearing loss, you just don't realize how bad it is until it gets really bad.  But now even my hearing aids are not that helpful.  I feel like my hearing loss compounds as each year passes.  My loss could be genetic - my grandma was completely deaf by the time she was in her 60's.  It could be a combination of things: ear infections, rock concerts (front row Billy Idol!), shooting guns without adequate hearing protection, etc.

Until now, I was under the impression that I missed about 10% of what happens at work or in social situations.   But I had an "aha" moment the other day, and realized that I probably have no clue how much I am missing and it's probably a much higher percentage. When I was on my solo bike trip I realized that when I'm not ensconced in my little world of Lander,  I actually can't hear the majority of people than I come across on any given day.  

It made me wonder: How often do I appear socially inept because I respond the wrong way? Or because I can't get the gist of the conversation?  Or I say something that someone has just said - and I get the dreaded "no duh" look from people?  Or I don't respond at all and look like I am ignoring the speaker?  Worst of all, what if people don't think I have a sense of humor?  

Most of the time I don't worry or care about what people think in general, which is a nice thing about being in your 40's.  But I do want my friends and family to know that I want to hear what they have to say.  My husband often acts as interpreter or  will ask me, "you didn't get any of that did you?"  Which can sometimes be annoying so I need to be more patient.  (Thanks for pointing out the obvious, honey!)

I hike and bike a lot with my sweet golden doodle named Daisy.  When I meet people on the trail it's frustrating because I can't even have a short casual conversation.  But since it's just me and one other person or group of people on the trail I have to say something out of common courtesy. And truly I like to connect with people.  But it's generally not a good idea for me to wear my hearing aids outside, it's too risky with expensive equipment that health insurance does not cover.  And so I muddle through a short conversation, and walk away feeling like a retard.  (Yeah, so "retard" is probably not politically correct but it describes how I feel perfectly!)

The worst is that I can't hear Ben very well (my 10 year old son), even with my hearing aids in. I'm trying to get my whole family trained to speak loudly and clearly and NOT while they are running water in the sink or from another room. Talking from another room or with their back to me makes me super cranky.  This past week Ben had a sore throat and so he was whispering. Both of our frustration levels were sky high. 
And don't even get me started about trying to talk on the phone or to support people with shitty headsets. I rue the invention of cell phones.  I can't hear anything when someone calls me on their cell phone, which everyone does of course.  No one seems to have a nice clear land line anymore.  Honestly, I would reach out more to my close friends but dang, it's so frickin' hard.  People leave messages on our answering machine that are complete gunk, and so I have to have my husband interpret and write them down for me.

Personally, I don't carry a cell phone, not because I can't hear - but because I don't like being that connected.  But things like email and Facebook are actually a help to me, because it's easier to communicate by writing.  Except that I don't much like looking at a computer screen after I get home from work.

People that are elderly and have hearing loss have an advantage - people expect them to be hearing impaired and talk loudly and clearly from the get-go.  Sometimes I want to wear a big sign that says, "I'm halfway deaf, speak the HELL up."  When I have to get a new set of hearing aids, they will be bright orange or blue, as my sign to the hearing world.

But I try to do what I can.  I want to proactive.  I am getting better (a little) about telling people that I'm hearing impaired.  But I get sick of reminding people that know me.  They probably don't realize how deaf I am.  I can no longer hear much with my left ear at all so I try to strategically place myself with my right ear towards the person speaking.

We just bought a TV (after not having one for 20 years!)  I watch everything with closed captioning, which sometimes bums me out because I'm not really watching the movie.  Movies in the theatre are a drag but I try to relax and enjoy the images on the big screen.  I've asked my husband to do all the ordering when we eat out because something as simple as ordering sandwiches for the kids at Subway is more frustrating than the average person can begin to imagine.

I could always hear my mom's voice but she passed away just over a year ago.  My closest living relatives, my brother and dad, are impossible to hear on the phone, and in person for that matter.  My dad has Parkinson's which means his speech is much more quiet than it used to be, especially when he's tired.   My brother only has a cell phone and it's also hard for me to hear/understand him in person.  My brother has a wicked sense of humor that I love so I really want to hear him, without asking him to repeat something a zillion times.

Sometimes it makes me sad.  There are probably rich friendships that I would have had but I tend to avoid people I can't hear.  I also avoid a lot of social situations, parties and things.  I'm an introvert by nature, but still.  Milling around with a room full of people making small talk makes me want to crawl under a chair.  So, yeah, I'm probably just a bit socially inept by nature.   Maybe my poor hearing steered me toward the introvert part of the spectrum.

I'm lucky, my close group of friends are understanding and I tend not to stray outside of my core group.  It's just too much work and too frustrating.   But hearing aids do help in social situations where there is background noise and being in a restaurant with friends was impossible before I had them.  But it's not ideal, and I always go away feeling tired and deflated.  I have to really amp myself up and be in the mood to go out and socialize.  The main thing is this: I need to be selective where and when and with whom I spend my energy.

Often when I get home from work I feel like I don't have any patience left to try to hear and understand my family.  And I'm not the most patient person in the world anyway.

I can't hear elk bugling, or sandhill cranes or the sound of rain on the roof.  But I can hear meadowlarks and chickadees.  I'm too stubborn to quit with some things, and I'm still trying to learn Spanish.  At times, it feels like my world is shrinking.  And the less I can hear the more frustrated I get; and the more I tune out and the more I miss, etc.  It's a vicious cycle.

But like anything, there are gifts.  I like solitude and I am comfortable with silence.  I have had wonderful, amazing experiences and jobs in the outdoors that I wouldn't have had without these personality traits.  Whether or not they are due to my hearing loss and the resultant feeling of being a little distant from society, I don't honestly know. Probably I'm just a tad quirky anyway.

Other benefits: when my kids are fighting in the car, I just take my hearing aids out.  The noises that bother other people, like generators in campgrounds, don't affect me.  I can't tell that my piano is wildly out of tune when I play. And I give myself a pass when something isn't worth the effort to try to hear/understand.

When I was first fitted for hearing aids, it was close to a miracle - I was amazed by all of the things that I could hear again.  But I could only wear them for a few hours at a time in the beginning.  My brain couldn't process that much noise and information.  I am still relieved when I take them out at the end of the day.  It's kind of like taking off your safety helmet or something at the end of a workday.  Done. Finished. Rest.

So, what does the future bring?  I'm going to look into cochlear implants but I'm not sure if I'm a candidate yet, and while they won't approximate human speech they might be an improvement.  I joined an online hearing loss support group a few days ago, which already makes me feel less alone, and its nice to commiserate with others, especially those who have a sense of humor about all of this.

I know that we all have our trials and tribulations and our stories to share, ALL of us, so truly -- thanks for listening.