Monday, July 12, 2010

In Case You Ever Wondered

In following up on yesterday’s “not a pity party” post, I would love to throw a few things out there that might makes this deafness stuff less confusing.

It’s been an eye-opening experience recently – to realize just how difficult it may be for others to understand my particular type of disability.

The first thing I learned about deaf people, is that not one of them is the same as another.  I’m no exception to that rule.

Stats:

I was born with normal hearing.

I spoke early (sentences at 10 months – Sorry Mom!), and was a voracious reader before kindergarten.

I began to lose my hearing at age 3 after suffering repeated bouts of chicken pox.  My immune system crashed, and on my 4th birthday, I lost the rest of my hearing from viral nerve damage.

I am profoundly deaf… my audiogram would shock those who don’t know the extent of my loss.

I’d like to think that in my musical family, I could carry a tune before my hearing loss.  Music has always been an important part of my life.  When fitted with my first set of hearing-aids, the first thing this kiddo did was belt out “I’ve Been Working On the Railroad”.

My parents determined to do the best they could to ensure they could still communicate with me.  I was enrolled in a total communication program – which included sign language, speech therapy, hearing-aids, lipreading, and sound recognition training (alarms, car horns, trains, dogs barking, any “dangerous” sounds, etc).

 

Now:

I finished school and college as part of a mainstream program with a sign language interpreter in most classes.  I work without an interpreter, but will use a sign language interpreter at church if available.  My mother and sister sign fluently, and often will quickly chat in sign language when we are out and about.

I’m sometimes asked where I’m from – usually people say my “accent” is east coast (which cracks me the heck up when I say “California” and they look at me blankly).

I cannot use the telephone.  I use email and text messaging to stay in touch.

My balance sucks.  If I close my eyes, I’ll fall over.

After4 years, I still put my hand on my son’s chest every night to make sure he is breathing.

 

Assumptions:

People sometimes assume that a hearing-aid is a cure for deafness.  But there is a difference between hearing a sound and recognizing it.

Being profoundly deaf means that without a hearing-aid, I hear essentially nothing.  I wear the strongest hearing-aid available - and because I had a 4-year headstart of recognizing sound, my brain does a decent job using the input to help with the lipreading.  But if you turn away from me, I am cut off completely.

Essentially the hearing-aid simply gives me an indication of sound.  It is yes/no, not multiple choice.  Meaning, I may realize that a sound occurred, but have no idea what it was or where it came from.  This would be akin to a blind person recognizing that they are holding a book, but not knowing what it says or what language it is written in.

Especially as a mom, I rely heavily on context clues to help.  If I see Itty Bit trot off in the general direction of the bathroom, then realize that a loud noise has occurred – I might want to check to ensure that he isn’t randomly flushing my makeup brushes down the toilet (again).

Whether a sound can be “heard” by me depends on so many factors: the surrounding noises, the volume, the pitch.  People often assume I’ve “heard” something simply because I’ve caught a motion in my peripheral vision and guessed at the correct response.

One of my least favorite “symptoms” of deafness is the accompanying ease of startling.  I am ridiculously easy to sneak up on if I am in an area that limits my vision or am concentrating.  This is absolutely embarrassing on a professional level (I may not hear, but I sure can do a terrific movie-worthy shriek).

 

Please:

Please don’t turn away from me.  If you look away while I’m replying, I look away too – trying to figure out what you might be hearing that I am missing.

Please don’t suddenly switch topics mid-sentence… so much of lipreading is guesswork, and it’s embarrassing when I’m still on the first topic and start getting those funny looks :)

Please pop into my view and wave… approaching from behind and tapping my shoulder will guarantee that movie shriek that I warned you about.  You might need the hearing-aid afterwards…

Please, don’t stare if I sign in public.  It’s a private conversation and while it might be cool to watch, it’s actually a pretty obvious form of eavesdropping, LOL.  Not only that, but my sister tends to do this when she sees people staring:

 

IMG_8139

Please, keep the lighting bright.  Dim situations mean I’m deaf and blind… it’s hard not to be nervous.

Please repeat yourself exactly when I say, “what?”  Often I’ve just missed one word and when you rephrase the entire sentence, I run the risk of missing more.  Saying “nevermind”… hurts like heck.

Please don’t over-enunciate and talk to me like a widdle kid.  OhMyLord, do you realize how hard it is not to laugh?!?  And it actually makes it harder to lipread… so I’m guessing like mad while I have a case of the giggles!

 

So now you know… but you already knew I was different, right?  Come on, ask away.  Anything you always wondered how a deaf person handled?

Just don’t be surprised if I break into song or bust out a few Princess Bride quotes in the answer ;)

26 comments:

Mom of M&Ms said...

WOw! I love your blog.. and your sense of humor. but we may be sisters, as I love Princess Bride and can probably quote the whole movie.

I think your post was very informative.. I grew up down the rode from a set of twins who both were profoundly deaf, if I remember right their deafness was attributed to exposure ot German MEasles during gestations.. Anyway.. Your words on your post to do where what I learned growing up... nad more people need to understand. Great job!

Kelly @ Sufficient Grace Ministries said...

Hi there...I haven't been over for a visit in awhile and popped in to check on you. Thank you for sharing this about yourself...and also for sharing such wonderful advice for others.

And...by the way...I definitely do not see a pity party, but do see a beautiful, determined woman living her life before God in a way that is truly admirable and inspiring. I'm so glad I popped in today.

Thank you...and God Bless...

Kmama said...

That was very insightful! Thank you so much for posting that!!

shmode said...

Incredibly informative my dear and I promise I'm not over pronunciating anything ;).
I have no other questions, but will seriously reconsidering watching someone sign just to see if I can understand it. Oops, didn't even realize I was eavesdropping.

BK said...

Exactly what my dad tries to get across to us... The missing one word in a sentence is hard for him! A lot of times he will just say the sentence back to us and have us fill in the word he missed. Better than us repeating it 2-3 times again. What hearing aids do you use? My dad also has to use the really high powered ones... And dangit I just forgot the name of em.

Tiffany said...

Good stuff girl! All these things that people don't even think about. Although, you do realize that, now that you've mentioned the movie shriek, Mr. Daddy & I just might have to team up on you someday.

Ok, not really. Maybe.

But the switching topics thing totally got me! Never, ever thought of it that way before. I will need to practice staying on topic for a while.

As you wish!

GunDiva said...

Oh, sweetie, my thought train de-rails on a regular basis. Gonna be hard when we finally meet IRL; I'll do my best to corral my thoughts and keep them on one neat little tra...ooooh, bright shiney...ooooh, squirrel...where was I?

That's right - corraling thoughts. I'll work on it.

S Club Mama said...

How did your mom and sister learn to sign? Just by signing with you or did they take a class? I'd love to learn but I just don't think I can teach myself. I know a few signs but not enough to hold a conversation or anything.

I will say, I have my hearing and when people say "nevermind" if I missed what they said, it ticks me off. Seriously, I asked "what?" because I want to know what you said.

Heather said...

You must be very quick on your feet to keep up with conversations and work situations.

Thanks for the information. It gives me a tad of insight into what my dad is going through losing his hearing as an older person. I realize it is not the same at all, but it is still helpful.

The Empress said...

do you know who would love this post, and who you would love to meet? Tulpen, from badwords.

I'll send her over.....

Beth Zimmerman said...

I'll try really hard to remember all that WHEN we meet but I've got to warn you ... I also have a startle reflex like none other ... which my husband finds very entertaining and I lose my train of thought mid sentence ALL the time! I've always thought that if I was to learn a foreign language I would choose ASL because it's so beautiful! There was a young woman at a church we used to attend who did it as a performance art to worship music and it was breathtaking. I'm not eavesdropping (honest) cause I have no idea what you're saying. I'm just stunned by the beauty of your language!

Melissa said...

Love your post Rachel, thanks for keeping it real! I will remember you the next time my adhd mind goes wandering from topic to topic! I'm REAL bad with that, and now will be trying harder to work on!

Judy Sheldon-Walker said...

Rachel, I have a grandson who has lost hearing in one ear and I am fiercely protective of the other one - you know grandmas! Rachel, people can be very ignorant. I am sorry for the frustration you have had to endure. Thanks for educating us. I still love your blog. It is down to earth. What's not to love?

Foursons said...

OK, so you're telling me that when I see you from across the room the first time we are to meet and your back is to me that I shouldn't run up to you from behind screaming like a wild banshee? (Or is it banchee?)

Oh and FYI- I have a hard time keeping eye contact with people. *shrug*

Dana-from chaos to Grace said...

OK, well, I'm the eavesdropper. Totally and completely. It's so beautiful to see.

Feel free to throw something at me. Just make sure it's covered in chocolate. ;)

We really must meet, my dear!

(But MAN am I a bad signer! I'm so rusty! LOL)

Cheeseboy said...

These are great things to know and this sentence was profoundly moving, imo:

"After4 years, I still put my hand on my son’s chest every night to make sure he is breathing."

HeatherOz said...

You are amazing!
And I still check each of my babies at night to make sure they are breathing and to rub their cheek before I go to bed.

Aunt Crazy said...

For totally different reasons than you, it is an act of self control every night NOT to put my hands on my 17 year old sons chest to make sure he's still breathing...sigh

Thank you for sharing all of this. I am a rabid eavesdropper because I am simply amazed by those that have learned to sign. When I was in 4th grade, our teacher taught us the alphabet and I was hooked. I have always wanted to learn the full language and have not yet had the opportunity.

Stacy said...

A wonderfully informative post, Rachel. Thanks for sharing this piece of yourself and your struggles. I don't see a pity party in your previous post, either. Just frustration...which is a part of life...and definitey part of YOUR life.

Dyann said...

So all we have to do to scare the bejeebers out of you is to tap you on the shoulder? SWEET!!!

And after 9 years, I still put my hands on all 4 sets of ribcages every night...sometimes in the middle of the night. I don't think that impulse will ever go away.

Lexie Loo & Dylan Too said...

I really enjoyed reading this post. Thank you for sharing! I think you're awesome!

Melody said...

Rach, when reading your words, often I fail to remember that you are deaf (not forget just fail to remember). I just want to say, you are a gift.

And thank you (and Mr. Daddy) for supporting me.

litanyofbritt said...

That was a really great post! When I was in third grade both my ear drums ruptured. After that I was deaf for a week or two, until I recovered. I remember singing a song to myself during playtime at school, which was evidently more like bellowing to the entire class. I looked up and every one was pointing and laughing. I had no idea, because I couldn't hear myself singing and didn't realize I was doing it until I saw the reactions.

And I scream like a banshee when I get startled as well. Just sayin.

K- floortime lite mama said...

the more i know you the more i like u

Crystal @ Semi-Crunchy Mama said...

Thank you so much for sharing all of this. I haven't read yesterday's post yet (I'm waaaaaaaaaaaaay behind on my blog reader and trying desperately to catch up) but even if that post was a pity party post, why not? Everyone's entitled to have moments like that now and then!

I know you mentioned that your mom & sister both sign. Is Itty Bit also learning to sign?

I started learning some basic sign language when my son was an infant, and started teaching him. Things like "more" and "eat" and "sleep" at first, but then he really picked up on it and now at 2 1/2 has a pretty remarkable sign vocabulary. I'm afraid he's going to loose it all as his spoken vocabulary increases, because he has no one other than me to use it with. I hope he doesn't...

brian said...

Great post...Thanks Rach for a peek into your world.

But there is ONE question I've always wanted to ask a deaf person. Um, well, ah....ok I'll just ask:

What's your favorite color?