Showing posts with label hard of hearing. Show all posts

Off the top of my head I can think of two medical exams where I actually need to use my brain: an eye-exam, and a hearing-test. But it's the hearing-test that I have honestly felt stupid, and even humiliated at times.

I got my hearing-aids when I was in pre-school. I vaguely remember my dad having to wiggle them into my ears with one hand, and with the other arm holding me still as I squirmed away. I also remember that they were attached with a red string, the kind of string that holds a librarian's glasses together - one loop around the left hearing-aid, and the other loop around the right hearing-aid. In my pre-school mind the only thing that string was good for was to easily yank them out the second I got home.
This means that I have had plenty of audiology tests in my life. Back when I was a kid there were fun blocks and toys to play with, and a Sesame Street puppet that danced in a window box as I turned my head to whichever speaker I thought was playing the tune. I don't remember when things got incredibly less fun, and incredibly more 'test-like' but it happened before I finished elementary school.

Soon there was one spot that I would have to stay very still in. There were all kinds of strange headphones placed at various angles around my head, and on my ears, and right behind my ears - and the only movement allowed was to raise my hand every time I heard a beep.
Wait did I really just hear that beep? Or did I just remember that tone from the last beep from a few seconds ago? OMG brain, please focus dammit!

Oh god not the annoying static at that annoying-as-all-hell pitch! And she wants me to listen for that tiny beep... with all this other noise in the other ear? Well that's just obnoxious!

Wait I didn't actually hear that low beep, but I definitely felt it vibrate from the headphones. Does that count? Should I raise my hand? Dammit, what the hell - I'll just raise my hand anyway. 

What will I have for lunch after I get out of this hell hole? Forget lunch, I need a straight up beer after this nonsense!

During this whole time it's just me in a sound-proof room with the audiologist in the other room, looking at me through a window as she fiddles with her dials and jots down on a piece of paper all the made up noises I am hearing. And in my paranoia, or lack of confidence in my hearing abilities, I am desperately searching her face for clues of whether or not I'm getting anything right!

But the beeps and noises are nothing. The toughest part of this for me is always the "say these words back to me.." part of the test.
Her: Say hot dog
Me: hot dog
Her: Say sailboat
Me: uhh..mail moat?
Idiot! That's not even a word. What the hell is a mail moat?
Her: Say cupcake
Me: uhh.. cake.. fuuhhc..wait. Oh, cupcake!
Context clues helps! 
Her: Say mat
Me: crap. Is it mat or bat? Wait did we already use either one of those words? Ugh just go with "bat."
Her: Say letter
Me: feather
Her: Say weather
Me: weather
Her: Say sweet
Me: uhh.. fleet?

It also drives me nuts because the audiologist hides her mouth during this part behind a piece of paper. My natural instinct is to say "I have a hearing-loss and lipread most of the time, can you move your hand?" But I can't. I can't because she is hiding her mouth on purpose and my gut says: you are a cruel cruel human being. But of course I know that's not really who she is... she just happens to get to be intentionally annoying as a professional career... and I try really hard to think to myself: this is for your own good. All while I am repeating:
"..pleather?"
"uhh.. waffle?"
"ban Kate?" "..no wait, wait, I meant pancake! Did I get it??" But she has already moved on without responding.
Her: Say bleacher
Me: creature

Oy vey. I consider having "passed" a hearing-test when at the end of it I am not taken away to the loony bin because I am "hearing things."

...Is when I'm not in my wheelchair.

Even though during the day I rarely take conscious note of my chair, it is still something that appears as the tiniest blip on my radar even on my best days. The attention drawn to my chair by others is always there during the day when I'm going about my business. On a usual day I've grown to be able to keep that attention faded to the background; unless someone comes up to me and starts a conversation about it or why I'm in it - the stares and points (on a good day) pretty much are a non-issue and remain as standard as traffic lights that dot the scene of my day-to-day environment. The light changes color and I move along: nothing fascinates me about this interaction, and it's something that I just expect to happen.  We all know it will happen.
But like I said, even on my best days, even on days when the fact that I sit in a wheelchair is something in the background - it is still there in my mind. I can't avoid it and it's not something I have the desire to avoid either, that route just seems pointless anyway I look at it.

Still though, it can be tiring. It's tiring to wait for someone to come help me get un-stuck from a snow bank because the curb cut is not plowed. It's tiring when I sit in this one position all day. It's tiring when finally I think I have a minute to myself when a gaggle of kids on a field trip are all gawking. It's tiring when someone thinks they're being so original with their car-related comment i.e. "you'll get a speeding ticket!" "Has that passed inspection yet, where's your sticker?" "Don't drink and drive!" "Do you have a license for that?" It's tiring to hear about how Sally's grandmother has the same chair as me. All of those things are tiring to deal with which is why usually I don't. My eyes typically glaze over and I nod, and I smile but really I am doing anything but paying attention. I don't really allow myself to think about how annoying the chair is, because I know that it's not the chair's fault. But there is a part of my thinking that says there are too many irritants out there to 'deal with' one by one - and the chair is just one thing... and if only I could change that. But I can't.
The most that I have figured out to do is learning how to not let those irritants get the best of me. I relegate them to the background noise of my day, sometimes with significant effort and other times with as little as a shrug and a smile.

The best that I can explain being out of my wheelchair as being my favorite part of the day... would be to compare it to when I take out my hearing-aids at the end of the day. Some of you might be hearing-aid users and others not so I'll do my best to explain:
Hearing-aids serve to amplify the sounds in your environment. Depending on settings and personal hearing-loss they might be amplifying higher pitches or the tones that might be lower. There are hearing-aids that focus on individual voices, those that can block out the background noise of a heater or a classroom fan - but still, these noises are amplified to the wearer.
For me when I first take out my hearing-aids there is this immediate vacuum of silence that rushes into my ear canals. And it is the most relaxing noise for me, even more so than the sleep machine app on my ipad that makes waterfall sounds. That shush of every sound in my environment creates a stillness to the end of my day that I appreciate (particularly after stressful and busy days!)
What I'm experiencing when I take out my hearing-aids for those few seconds or minutes is an adjustment period. My ears have just been pummeled with amplified sounds for 9-12 hours of the day and suddenly everything seems muted, it is bliss I tell you! Then my ears will adjust and I will begin to hear my environment again at my usual hearing-loss-level decibels.

But that is what being in my wheelchair during the day is like, and then being out of my wheelchair at the end of the day. During the day my wheelchair amplifies itself to my environment, making it and my differences known to those who have the urge to take note of it however they choose. At the end of the day, when I am out of my wheelchair again, there is a certain silence to the attention it brings - it is in the absence of it. 

Having two brothers means there is usually something ridiculous and goofy going on at home. I am the middle child and my two brothers are Timmy, and Andrew - the boys are ten years apart but these days it can be difficult to tell them apart from afar. Growing up with them involved many hours watching soccer games, purposely destroying their Lego structures, playing with transformers, and being the victim of Tickle-Tortures. Tickle-Torture is exactly what it sounds like except when you're forever smaller than your younger brother, it somehow seems even more torturous.

All in good fun, of course.

But when you're in the second grade and seven years old, it might not immediately seem like having two brothers is all in good fun. When my parents first told me that I'd have a younger brother I wondered what it would be like to be a big sister. And now that I think about it, it never actually occurred to me that there was a possibility Andrew could have O.I. (He doesn't - neither of my brother's do).
Instead I wondered what it would be like to have to share a room with a baby brother. What would it be like to have to share my toys with him? What would it be like to teach him how to read? What would it be like to have crawl-races on our living room floor together? As I sat next to my parents on our couch that night when we found out, I felt an immediate enormity - both in size and in importance!

What if that day in 1993 hadn't happened? What if my parents never said I would have a younger sibling? How would things be different? Who would I be today?

For starters I don't think I'd be half as responsible as I am today. When he was a baby, Andrew used to have his own set of medical issues involving G.I. problems - he vomited a lot and for almost his first year one or two years required a feeding tube inserted through his nose. From the perspective of a young child - a seven or eight year old - this was horrifying! I was terrified and worried constantly about whether or not he would grow-up to be 'normal' in the way that I, of course, considered myself to be normal. Would he be able to go to school without kids making fun of him? Or would he need to walk around with a tube up his nose forever? Around that time I made up my mind that I would be the one to teach him how awesome it is to be visibly different, and how you can still have plenty of friends and lead a normal life despite any challenges.
I also saw the stress and strain that this brought on for my parents. Mom and dad fought constantly during this time because of the difficulties involved with caring for two children with special needs -- so I immediately began to try my hardest to take care of myself. Although I could always see the worry lines and stress that weighed on my parents every time I fractured a bone, watching them go through separate medical issues with my younger brother had a wholly different impact on me. It led me to believe the baby needs mom and dad more than I do right now. Someone else will always need more help than I do, and there are somethings I can do on my own now. Whether that meant picking out my own clothes in the morning, changing the batteries in my hearing-aids, or learning to do my own transfers from toilet to wheelchair with various casts on -- at seven I began to learn that independence is a skill that isn't just for my own benefit, but because it would also be helpful to others if I were more independent.

Me and Andrew celebrating his birthday.

By the time Andrew was in Kindergarten all of his G.I. problems had gone away. Like any other teenage boy Andrew now eats everything, and will probably be taller than my older brother if he isn't already (despite whatever Timmy says). Between the time Andrew was transitioning from preschool to kindergarten we found out that like me, my younger brother also has a hearing-loss. The neutral colored clunky ear pieces that hung off his ears were a source of embarrassment for Andrew. He despises drawing any attention to himself, and in general would much rather blend in and cause as little disturbance as possible. That is, until he came across the violin.
Most who know my younger brother (in real life) also know that he is a brilliant musician. He took up the violin not long after we first discovered his hearing-loss and has never looked back since. When he plays the last thing on your mind is hearing-loss or hearing-aid because the precision of his finger-placement, the exact timing of every note is so perfect that when he plays in the background when I am on the phone - friends often say "Sandy what recording are you listening to?"

By watching Andrew find confidence with his hearing-loss through his passion for music, and playing the violin -- I have learned to find confidence in connecting with others through my writing. Had my younger brother not been born I wouldn't have been able to see this magic creativity offers by watching someone else perform it.

So had my younger brother not been born, those are just a few of the things I would be missing out on. Sure, maybe I would eventually learn to become more independent. Maybe I would have eventually learned how to do my own transfers with a cast on. And maybe I would have discovered the pleasant effect classical music has on my concentration -- but would it have been the same? Would it have been as hilarious or surprising? Would I have cared about the things I do now in the same way? Would I still be the same person? No, absolutely not. 

Do students with a hearing-loss still use F.M. systems in classes? Or is there an app for that now these days? I am only half-kidding with that remark!

For those who may not be familiar with it, this is essentially how an F.M. system works: There is a transmitter and a receiver. On the receiving end is the student who usually wears a little add-on piece that attaches to the hearing-aid. On the transmitter end is a device that can can resemble a microphone and is either clipped onto the teacher, or is placed near the area where people are talking.
Some people may be wondering, well if you have a hearing-aid isn't that enough? Ultimately what is considered to be 'enough' will depend on the student's hearing-loss. For me it wasn't enough because in a classroom setting there are chairs squeaking against tile floors, there are lights humming, radiators blasting, pencil sharpeners churning, lockers slamming, and of course -- other students making their own thousands of noises! (It's really shocking how much noise one 7 year old can make if you give her a pencil, never mind a classroom of 21 others!) A hearing-aid will pick-up on all of these sounds and it goes into the student's ear; so by the time the teacher speaks, his or her voice may be all but drowned out or muffled at best.

With the added use of an F.M. system the voice(s) that need to be most 'focused' on is then better able to be funneled directly to the student via the transmitter. But of course when you give a child any piece of technology or adaptive equipment... in the eyes of a child/student its uses can transmit much much more than just the voice of a teacher, or that group discussion. Here are a few things to NOT do from my own wonderful life experience:

1. Don't leave it in the bathroom. 
In middle school was the time when I first experienced classroom changes. For each subject we had we would have to go to a different classroom, and during that 4 or 5 min transition girls would gab in the bathroom together. I was, of course, barely responsible enough to remember my own homework so giving me the responsibility of taking the microphone from one teacher to the next was a lot. Often I would absentmindedly leave the microphone on the sink in the girls bathroom and then go off to Social Studies class, then suddenly be terribly embarrassed when I heard a toilet *swoosh, flush*

2. Don't ask your teacher about that private conversation.
A common happening with the F.M. system is that it forgets to be turned off. I can't even begin to tell you how many private conversations I accidentally was 'looped into' because my teacher forgot to turn it off, or take off the microphone. Does she really think Stephen peed his pants? Does he really think that Megan's mother is the most annoying ever? Does the lunch lady really despise watching the classroom? Was the bus driver really smoking on the playground? Avoid repeating these stories if you want to avoid awkward moments... for everyone involved.

3. Don't say "said" when the teacher says "Repeat what I said." 
Unless of course you have a teacher who has any sense of humor! I may have mentioned this before but paying-attention is not my greatest strength.. which of course doesn't really help the whole hard-of-hearing-student bit. Often teachers weren't sure if I had just not heard what they were saying, or maybe the F.M. system was malfunctioning, or maybe ...I was just spacing out again and chatting with my friends. I even had lots of crafty teachers who had caught on to my ability to lipread, so to test the F.M. system functioning they would turn away and whisper quietly into the mic so only I could hear, "Sandy if you hear this and if you're paying attention you can have a gumdrop from my desk.." Then they would turn back to the class and call on me "Sandy, repeat what I just said." And 7 times out of 10 I was probably not paying attention and would guiltily say... "...said?"