I Can Hear You Now.

For all of you talking behind my back (or behind your hands so I can’t lipread), I have sad news.  Actually, first–shame on you– and second, I went out and got myself some hearing.  For the low, low price of $2,300, I am no longer Helen Keller.  Well, full disclosure: that’s true unless i’m in the shower, pool, or hot tub, because this thing can’t get wet.  I guess you can talk about me behind my back then.  Anyway, yes.  I got a hearing aid.

Let me set this post up by saying two things:

1.  I was without a hearing aid for ten years.  I am not looking to explain why or psychoanalyze myself.  One of my best friends in the entire world is an audiologist.  It helps quell your nerves and the childhood trauma when one of your favorite people is reassuring you every step of the way.  Major thanks and love to Caitlin.

18 years of friendship and still going strong. Me on the left, Caitlin on the right.

18 years of friendship and still going strong. Me on the left, Caitlin on the right.

2.  The last time I had a hearing aid, digital technology had just come out.  The first generation was a stepping stone and incredibly flawed.  It was programmed by a computer to have two settings and frequently shut off.  It was more frustrating than not hearing at all!

So, what does that mean? NOTHING prepared me for this thing.  I’ve lost quite a bit of hearing since the last time I had a hearing aid.  If you’ve read my blog,  you know that I don’t lament what I don’t have.  Being moderate to severely hard of hearing is not the worst thing in the world.  But, as I missed out on more and more, I started thinking THE.MOST.OBVIOUS.THING.IN.THE.WORLD.  Why was I allowing myself to be left out and miss things and why on earth would I allow it to continue if I could do something about it?  I know– Captain Obvious over here.  So, I dug deep, put on my big girl pants, made an appointment with Caitlin (who had been patiently awaiting the day since the ink dried on her doctorate).

As the wait for it dwindled down, I was more and more excited, and thrilled at the prospect of being part of the world again.  Now, I’ve always been honest on this blog when I talk about my hearing and I want to share really candidly, so i’m going to confess something.  There was this little part of me that was scared it wasn’t going to work for me.  Sure, countless people benefit and Caitlin was sure I would, too.  Maybe I had Special Snowflake Syndrome, but it was really annoying wondering if I was setting myself up for disappointment.

The day finally arrived and when I got there, Caitlin went through her whole spiel (including some gross maintenance stuff i’ll spare you), then put it in.  I froze.  It was like I forgot how to move, but I was just completely freaked out because I could hear myself swallow, breathe, and when Caitlin spoke, I started to cry.  It took approximately 45 seconds for me to realize just how much I had been missing.  I knew right then and there that this was going to be life changing.  I like to think I have a way with words, but when I try to describe what this is like, words seem to fail me.  It’s like someone turned the volume up on the entire world, and it was set on near mute for a really long time.

It took about a minute for me to speak and stop answering Caitlin’s questions with anything but a nod.  The prospect of hearing my voice was horrifying.  I’m not going to lie– I cannot stand the sound of my own voice at the moment.  Our brains process our own voices differently than strictly external sounds, and as my brain adjusts, my own voice sounds echo-y and oddly lisp-y to me (no matter how much people assure me I have no lisp of which to speak).  It sounds like I’m listening to myself speak over a ham radio.  It gets better everyday, but still strange.

The first conversation we had in Caitlin’s office was basically a 30 minute gab fest (shoutout to having your best friend be your doctor) and not ONCE did I need her to repeat herself.  It felt miraculous.  I sailed out of her office with a “have a great weekend!” to the receptionists, exhilarated when I heard their responses.

Then I stepped outside.  Readers, I’m just going to say it.  I was so cocky.  “I don’t need to ease into it.  Let’s just set it at its full settings,” I said in the office, which was pretty empty on a Friday afternoon.  That Special Snowflake Syndrome reared its ugly head and decided I’d acclimate super fast.  After all, i’d had a hearing aid before.  I laugh at my naivete now.  I walked out of that office and it was like I got smacked in the face with a 2×4 made entirely of loud noise. It came at me all at once–my feet crunching through the leaves, heavy traffic (horns, brakes, speeding cars, etc), wind, keys jingling, and god knows what else.  There was no such thing as background noise- it was ALL FOREGROUND NOISE.

I was borrowing my step-dad’s SUV, and even that offered no respite.  I fired that thing up and all of a sudden, I could hear the noise that accompanied the suspicious vibration I could only feel pre-hearing aid (PHA).  On the way home, I decided to listen to music through my iPhone.  Last time I did that in the car PHA, I turned it all the way up and tucked it into my bra strap so the speaker would be aimed at my ear.  Imagine my shock when I pressed play with the volume at 1/4 capacity, tucked it in the center console and heard it crystal clear.  Cue tears.  Cue more tears when I started singing along and realized how out of tune/key I was.

Simon-Cowell-Gif

I stopped at Starbucks on my way to my Friday night plans.  Big mistake.  Do you have any idea how LOUD Starbucks actually is?  The cappuccino machines, the music, the chattering, even the pumping of syrup.  It was like being assaulted when I walked through the door.

simma-down-now

But beyond that, when the shock passed, I realized I could hear the cashier talking to the customers way in front of me, I could hear some guy selling a woman an iPhone at the table next to where I waited for a pumpkin spice latte (Absolutely DISGUSTING, by the way.  Why do people drink these? I wasted my free drink trying that crap.).  It blew my mind. It terrified me.  Even now it scares me to think of just how much I’ve been missing all this time.

When I got home later that night, I could hear my refrigerator running.  I could hear my next door neighbors through my wall.  I could hear dogs barking outside, the gas turning on in the oven and all kinds of sounds that I couldn’t even identify.  It’s like my brain is trying to catch up.  I have relied on lip reading for so long that it’s hard to break that habit and rely only on sound.  Sometimes, it takes a little time to process what I heard, so I say, “What?” out of habit, even though I heard it.  Then, halfway through the repeat, I say, “Never mind! Got it!”

Even with all of that, my life has changed in ways I didn’t even realize it would.  Hiking this weekend, I carried on conversations with people ahead of and behind me without even thinking about it.  Even going to the store and buying things is a whole new experience.  I can banter with the cashiers.  I can hear sales associates even as they walk away talking as they lead me to what i’m looking for.  I can hear my boss from in her office when I’m at my desk.  I can listen and write notes at the same time because I’m not trying to lipread.  I can hear the tea kettle whistling.  I can carry on a conversation with my extremely soft spoken nine year old cousin.

I never realized how much EFFORT it took me just to do the smallest of things involving human interaction until I didn’t have to do them anymore.  And it turns out that the TV has a volume DOWN button.  Who’d have thought?  It’s been a week and a half of revelations.  I’m going to stop here for now.  This post has gotten long.  Next time i’ll share some funny anecdotes and crazy stories about adjusting to my new reality–there have been some really unexpected things.  Like, how I burst out of my office when the copy machine was warming up because I thought someone was vacuuming at nine a.m.  I had no idea what it sounded like.  I’ll leave you with some firsthand accounts of that first weekend:

Meg text 2

And that’s how I discovered I needed a new TV.

Meg Text 1

And for the LOVE of freaking puppies, the next person who covers their mouth and speaks to “test” me is going to be get a lovely kick in the shin.  Yes, I can hear you.  And I can see that you look ridiculous.  Buckle up, kids.  I’m bionic now.

 

 

 

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Why I am Going to Hell.

Ah, fall. How I loathe thee. I may be the only native New Englander who hates the fall season. I like football and the fact that ski season is coming, but that’s about it. The days are shorter, the leaves fall off the trees and leave them barren and depressing, and you can’t get a parking space in this city to save your life (college students). But, I’m determined to make this fall a good one and part of that is laughing a lot (Ok, and drinking Harpoon Pumpkin Cider. But we won’t spread that around).

So, I’ve talked before about getting away with crazy stuff when your parents are deaf. How about when one of them is deaf AND blind? That’s right, kids. I’m going there. My dad, on top of being deaf, was blind in the last couple of years of his life due to diabetes complications. This, of course, meant that he didn’t really get out much, and when he did, it was mostly for Doctor’s appointments, or to visit the Lighthouse for the blind, where he was learning Morse Code.

This didn’t mean he didn’t still have his pride, however. Like any ladies man (and lordy, was he ever one of these), he took a lot of pride in his appearance, including his hair (of which he had pretty little). One fateful afternoon during one of our visits, he turned to me, sliding his hands through his thinning crop and asked me the question that strikes fear in my heart to this day: “Will you give me a trim?”

Let me iterate a couple of key points here. First, this was before a burgeoning crop of tutorials on Youtube. I was flying blind. There was nobody carefully explaining each step to me on grainy video in their basement. Second, you think my microwave fire setting record is bad?? Arguably, my track record with hair and hair cutting is worse. I once accidentally cut a chunk of hair from my own head (incidentally, I also burned one, but that’s a whole other story), and as my dad probably forgot- I balded (this needs to be a verb) pretty much every Barbie I ever owned.

You know the deal. You start out thinking you’ll do a “super easy” asymmetrical bob. You chop it and you just need to take off a TEEEEENY bit more on one side…and so it goes. Before you know it, Barbie looks like she’s either slowly becoming a porcupine, or in the first stages of a hair transplant, with short prickly hair sticking out of the holes in her head.

So, there I was, contemplating his request, when my grandfather ever so helpfully piped up, “I have some haircutting scissors!” How was I to refuse? How hard could it be to cut the short hair of a man with not much hair? I wrote (tracing letters of each word) on my dad’s back, “Y-E-S-I-C-A-N.” He was grinning and so clearly happy that you’d think I was Vidal Sassoon. I prepared him and went to work. Keeping my hand steady, I cut in a straight line- from one side of his head to the other. Putting down the scissors and stepping back, I took in my handiwork.

He looked like Shemp.

He put his hands in his hair and said, “This feels great!”

Horrified, I did the only thing a girl can do when she has accidentally given her 48 year-old blind father a bowl haircut.

“L-O-O-K-S-G-O-O-D”

He grinned. I stood there paralyzed. He ran his hands through his hair again. I shuddered.

“W-A-N-T-T-O-C-L-E-A-N-I-T-U-P-A-L-I-T-T-L-E”

He nodded agreeably and I went back to work. Using an upward motion, I hacked away at the very clear…hem-like affect? (for lack of a better phrase) I had created. It was like trying to blend a sculptural hedge. I sighed with relief when the distinct bowl shape started to disappear… Until I realized it had a pretty clear zig-zagging pattern. ***cue Barbie flashbacks***After the time when I was three and I left a butterfly barrette in his hair after playing hairdresser and he went to CVS for something, I don’t know why he thought that was a good idea.

In the end, it didn’t turn out so badly, I suppose. My grandfather thought it was an improvement, anyway. Then again, his eyesight and sense of style was questionable, at best. My dad was happy, though. And me? Well, obviously, I’m probably going straight to hell for lying to a blind man.

Holy crap. Did you just say I’m normal?!?

I first met my friend Ali about six years ago.  Ali is the volunteer manager for a Leadership Conference I participate in.  I marched right up to her at the end of the volunteer session and said, “I’m Jenny.  I’m deaf, just so you know.  I probably shouldn’t be on registration.”  The next year I told her, “Oh yeah. I’m the deaf one, remember?”  This was not the first or second time I made this bold declaration.  Eight years ago, before even applying to my job, I went to my now boss and said, “I’m deaf.  I don’t want to waste your time with an interview if you feel that this will be a problem.”  She later told me that it was my forthrightness and boldness that tipped the scales in my favor.

I do this all the time.  Mumbling store clerk?  Mumbling Waitress? Trouble on the phone when the other person has it on speaker?  “Oh, I’m deaf.  Can you please speak up?” I even do it at parties when I’m introduced to someone new.  “Just a heads up- I’m deaf so please look at me when you talk.”  Somehow, it’s become no big deal to me to divulge this information.

I spent so much time as a kid feeling like my hearing loss was something to be ashamed of.  It set me apart.  It made me different.  It meant I was “disabled”- I freaking HATE that word.  It made me work harder to be better, be smarter, be the best at everything.  This has made me strive to overachieve- and I do.  In the fourth grade, the kids in class called me “the walking dictionary.”  I’ve always had something to prove.  I hid my hearing loss as best I could.  After all, I was plenty attuned to the looks my mother got or the problems that she faced just walking out the door on a daily basis.  But me?  I was a chameleon. I could blend.

As is wont to happen, the older I got (and ironically as I lost more hearing), the less I really gave a crap what other people thought about me and I accepted that my hearing loss was a part of me and that it really didn’t matter.  It seemed that I was being blasé about it and just mentioning it as an, “oh, heads up!” sort of way made it no big deal.

This morning, Ali (I’m now her second in command) and I were attending a breakfast leadership seminar led by none other than the enigmatic Vernice Armour, the first African American female fighter pilot.  Vernice asked us to take a minute and jot down our goals/aspirations, etc.  So, I wrote the usual “Open my own fabric design company,” and “Start a small business branding consultation firm (er…I also wrote, “STOP PROCRASTINATING.”).'”  The last thing I wrote? “I want to be an example for others like me, be an advocate and work to bridge the gap between the deaf and hearing world.”

Ali (such a snoop!  Kidding, Ali. 😉 ) saw what I wrote and at the break she asked me about it- about this gap and why I felt that I had to bridge it.   She went on to say that she always found it interesting that I label myself so quickly, especially when it’s something so invisible.  She pointed out that technically, i’m moderately hard of hearing and that I could probably just tell people that I was sometimes have a little trouble and might need to ask them to repeat themselves.  She was genuinely curious- she wasn’t being judgmental or negative.

I told her that it felt like something people should know so that they’d know why if I didn’t respond.  I went on to say that on some level, perhaps it’s also about me saying, “See?  The stigma isn’t always right!”  So many people I know have never come across someone my age with a hearing loss.  I’m an anomaly.  I’m their first live impression.  All they know is what they’ve heard or seen on TV, etc.  That stuff? Not always good.  Hell- the school curriculum probably still teaches kids that Helen Keller was called, “deaf and dumb.”  When I’ve told people I’ve had countless, “Are you kidding?!” reactions.  I’ve been accused of lying.  I’ve gotten, “Wow!  You’re not what I expected!”

Then Ali said a few things that blew my mind.  She pointed out that by labeling myself (it didn’t even really hit me that I was labeling myself!)when people would otherwise not know meant that I was setting myself apart right off the bat.  She told me that she doesn’t see me as different and that to her, I sometimes just need things repeated.  That was when she dropped the bomb- “To me, you’re normal!”  I’m pretty sure my eyes were huge at that point.  I don’t think i’ve ever considered myself normal- not as a child of profoundly deaf parents and certainly not as a hard of hearing person.  But, what if I am?  What if I’ve been limiting myself by defining myself in such a way? What if I’ve been using that as a default setting so I can “check out?”  What if I stopped answering the question “What is it like to be deaf/hard of hearing” and starting answering the question, “What does it mean to be me?”  My hearing loss is a very small part of who I am.  It is not the sum of my parts.  Maybe I am normal?  Relatively speaking, of course.

I will always be an advocate for deaf and hard of hearing people.  How can I not be?  I will continue to  make jokes about my hearing mishaps- it makes ME laugh as much as it makes other people laugh.  I will continue to share my experiences here.  I am not now and will never again be ashamed of my hearing loss.  But darnit, this is food for thought.

Being Deaf: Fortunate Side Effects

First, I must express my surprise that Paula Deen has finally managed to cause her own downfall and it wasn’t butter-related.  For shame, Paula.

On with the show.

If you have a WordPress blog, you know that among the stats reported to you are the search terms that were used to find your blog.  I’ve had some odd ones (how to make your own fake puke, putting out electrical fire), but one that really stuck out to me?  “I kinda want to be deaf.

I cannot imagine who typed this:  someone whose kid sibling took up the recorder(cue home movie of me playing the recorder on both an inhale and exhale at age three)?  A person living next to an airport? A new parent? A parent, period.?  A crazy person? Beats the hell out of me, but it certainly got me thinking that there is something to be said for not hearing things.  Or from the side effects that seem to come with the territory.  So, I’ve told you before what it’s like to be deaf and some of the unfortunate parts, but let’s answer another question.  Why is it not always bad to be deaf?

1.  Sleep tight!

Me speaking to my co-worker at a few weeks ago.

Her: I’m exhausted!

Me:  Why so tired?

Her :  Stupid thunderstorms kept me up!

Me:  We had thunderstorms last night??

In the morning, friend is over.

Him:  What the hell is that noise?

Me:  What noise?

Him:  I hear little kids yelling.

Me:  Oh! Probably just my landlord’s kids.  Their rooms run the length of mine. 

Him: How does that not make you insane?!?!….Ohhhhhh, right.

2.  Heightened sense of smell (both a blessing and a curse, but i’ll put it here for the purposes of this exercise).

Boyfriend at the time picks me up from the airport, I hop in the car.

Me:  Did you have fast food for dinner?  It smells like a big mac and fries.

Him:  Yeah- TWO DAYS AGO!!!  

At family gathering at aunt’s house.

Cousin Mia (coming into living room next to kitchen, stands a few feet away from me): Let’s go play something.

Me:  Have you been eating peppers?

Aunt (calling out from kitchen):  Mia, I TOLD you to STOP eating peppers off the cutting board!

3.  The Lipreading.  Oh, the ability to lipread.  It’s an incredible espionage tool (although I wouldn’t mind an Aston Martin ca. 007). 

I wouldn’t even know where to start with this one.  It has served me well countless times, not only because it comprises about 90% of the way in which I “hear” things, but because I have caught a lot of crap I am certain I wasn’t intended to. This can be wildly entertaining for me, if I use these powers for evil.  Those “bad lip reading” videos?  I can actually tell what the heck they are really saying.  Sometimes, when I watch sports, I know the plays before the announcers do or the rest of the viewers because I lip read the coach (occasionally in the huddle, too).  Also, Bill Belichick?  Filthy potty mouth. On a side note, it’s really too bad that lip reading can’t help me figure out what the hell his latest “experiment” is with this Tebow business.  

4.  Ease of tuning out that which you don’t want to hear.

I’m going to be honest here.  I try very hard to hear what’s going on around me.  Unlike a hearing person, I have to CONCENTRATE.  Concentrate on the sound, concentrate on deciphering it, concentrate on the non-verbal cues, etc.  It is really really really easy for me to just let it go.  If I stop concentrating, it just becomes NOISE.  I can zone out.  You can imagine that this can be really useful.  My mom?  She just turns off her hearing aid.  Instant peace and quiet!

5.  Awkward chit-chat can be warded off easily.

“Sorry, I’m deaf” is a perfect deterrent for those pesky awkward situations including, but not limited to:  Religious fanatics at your doorstep at the crack of dawn, salespeople that will NOT leave you to browse in peace, the [insert cause here] advocates accosting you on the street, etc.

On a side note, my mom often gets out of speeding tickets by playing the deaf card.  I haven’t tried this one.  It requires mastery of the deaf accent, and I don’t do that well.

You know, I joke around a lot.  As I’ve said before, it’s so important to be grateful for what you DO have, but honestly, if you can’t laugh about your shortcomings or the less than optimal situation you’re in through no fault of your own, what kind of life is that?  Yeah, it’s tough to be hard of hearing sometimes.  I know from growing up with profoundly deaf parents that it’s even harder, but it isn’t all bad.  I prefer to be an optimist.

How I Deal With a No Good, Terribly Awful Bad Day

Growing up, my dad taught me several things:

  •   ALWAYS make sure the ladder is secure before climbing onto the roof.  If you DO find yourself in a free fall, try “tuck and roll.”
  •   Installing an ironing board that folds down to sit over the toilet in the laundry room is a bad idea, even if the room is super small (it took ONE pant leg in the toilet to make him take that thing down).
  •   Stuff your face when in the orchard picking apples.
  • There is nothing better than a dog.
  • You get what you pay for.  Buy quality.
  • There are a lot of schmucks out there (“You know.  Ronald Reagan. President. Actor. Schmuck.”  That’s a direct quote.  I do not feel strongly about Reagan one way or the other.).
  •  Adding red wine to chicken will turn it purple (not an issue, since I don’t eat meat, but knowledge is power!).
  • Driving a speedboat onto the beach like a maniac, will, indeed, get rid of SOME barnacles on its hull.
  • Wooden roller coasters are the best kind.
  • If you find yourself in the drugstore with odd implements in your hair because you let your kid play hairdresser and she didn’t take them all out before you left the house…just roll with it (it was a butterfly barrette, ok?  It was pretty.).
Dad and I- obviously, this was the 80's.  And interior decorators, my parents were not.

Dad and I- obviously, this was the 80’s. And interior decorators, my parents were not.  It is also possible I am drooling in this picture.

Above all, though, what I learned from my dad was the power of humor and the importance of hope.  Growing up, my dad was the consummate ladies man and bad boy.  He was an all-star baseball player, a black belt in Tae Kwon Do and a chronic flirt with a penchant for numbers.

Appearances can be deceiving, though.  He was deaf, he had juvenile onset (Type I) diabetes and later, he would find out that he had Friedrich’s ataxia, a disease that erodes the cerebellum.  Eventually, this would rob him of his ability to walk, and the dexterity that allowed him to take a car engine apart and put it back together (he could build ANYTHING). When my dad passed away, he was blind from diabetes complications, profoundly deaf and confined to a wheelchair.  He was on dialysis from kidney failure (another diabetes complication) and he was hospitalized again and again as infections and other complications wracked his body.

I write this not to make you pity him, but I tell his story so that people can understand how truly amazing it was that he had not lost hope.  Hope that his life would improve.  Hope that he would be able to rejoin society.  Hope for his children.

For the last few years of his life, communication was exceedingly difficult.  He was trapped in his body- he couldn’t hear, but he had plenty to say.  When we first realized he was going blind and would no longer be able to read lips or see sign language, I had to think fast.  When I was a child we played a game before bed time where he would trace letters and words on my back.   So, I told his girlfriend (he was in FL, I was in RI at the time) about our game and told her to give it a try.  She called me later that day and reported back that she started tracing out the letters of my name on his back, and he started to cry when he realized what she was doing.  He remembered.

It was our game that became his lifeline.  Other than “two taps for yes and one for no,” every sentence was painstakingly spelled out on his back.  At the time of his death, he was learning morse code, hopeful that this would make communication easier, and that he would be able to travel with a companion (his own Annie Sullivan, if you will).  He had turned down my offer of a kidney if we were a match, but was hopeful that dialysis would continue to work.  He talked about the future.  He still laughed and joked.  Often, he’d poke fun of himself.  Sometimes he would tease me (mostly about my love life and shoe obsession).  Sometimes he’d tell stories of his youth (he was an incredible story teller and very very funny).  I would rest my head on his shoulder or if we were sitting on the floor, on his knee so that he could feel me laughing as he spoke.   Towards the end, it felt as though he was cataloging his life- getting the stories out while he still could and making sure his history would carry on.

It does carry on.  Even though it’s been six years since I’ve heard his voice, his laugh, or gotten one of his really really great hugs, it is always, always with me.  I watched my dad die.  I sat and held his hand with my brother holding the other.  I was with him when he went out of this world like he was with me when I came into it.  It changed me irrevocably. I lost 80 pounds and turned my life around.  I take better care of myself. I take chances.  Every single day, I am thankful I can see, I can walk, run, do a cartwheel, ice skate, ski, play volleyball, walk on the beach, and so many other countless things. When I complain about the small stuff, I try to remember my dad- quick-witted and sharp minded as ever, but trapped in a body that didn’t work, and how he refused to quit.  He refused to accept that this was the hand he had been dealt. He had his rough moments, but he handled it with humor and he even handled it with optimism, when optimism was hard to come by.

So, yeah.  Maybe I had a bad day. That’s ok.   It’s relative, really.  It’s ok to wallow for a bit, but sooner, rather than later, I know to pick myself up and dust myself off.  I have to believe that things will get better.  I have to try not to sweat the small stuff.  How can I not?  After all, I AM my father’s daughter.  Happy Father’s Day.

Miss Communication

Here are a couple of  little public service announcements for you.   First, always be careful when signing “hungry.”

ASL_Hungry2

More than one swipe of your hand and it means hungry for something else entirely.  Second,  if you teach your friends how to sign “bitch,” it’s probably going to come back and bite you in the ass at some point.  Voila! Those are my announcements for today.

Anyway, this morning, I made my usual pit stop at Starbucks for my usual overpriced (yet delicious) latte.  While I was waiting for said latte, I spotted a guy wearing this shirt for gay pride today in Boston:

For those of you who don't know how to fingerspell: this says "equal" and it's part of the human rights campaign for gay, lesbian and transgender equality.

For those of you who don’t know how to fingerspell: this says “equal” and it’s part of the human rights campaign for gay, lesbian and transgender equality.

Curious as to where he got it, I politely inquired, and wasn’t shocked when he didn’t respond, but looked up in a delayed reaction and signed, “sorry, deaf.”  I smiled and proceeded to sign, “No problem.  Where’d you buy your shirt? ”  He was pleasantly surprised and we struck up a quick conversation.  The entire time we were chatting, all of Starbucks stared.

Now, I’m accustomed to being stared at when I sign with my mom.  It’s blatant and I think that it goes with the territory.  It’s not all that commonplace for many people and so they’re curious.  It doesn’t bother me.  But certainly, in this case, the irony of this was not lost on me.  We were chatting in sign language about a shirt that advertises “equality.”  I was reminded of the fact that there are inequalities that befall people like my mom and others who are profoundly deaf- it’s everywhere.

Every movie theater that doesn’t offer accommodations, every insurance company that won’t cover hearing aids, every play or public event that doesn’t have interpreters, shitty captioning on Youtube, Netflix offerings without captioning, people who say nasty things, think deaf people are stupid, and don’t bother to repeat themselves- they are all perpetuators of inequality.  Shame on them.  And while we’re at it, shame on anyone who thinks it’s within their rights to tell ANYONE who they should or shouldn’t love.

I’ve been thinking a lot about how we communicate lately, in my master’s program studies, as a designer, as a hard of hearing person, as a daughter of deaf parents, and it blows my mind to think about the thousands of different ways that we deliver messages- literally and figuratively-to the world around us.  But let’s be honest- there is nothing like a little deaf (mis?)communication for a good laugh, so here are some good ones as of late.

During an increasingly desperate search for a lamp for my new parsons desk:

Me: Let’s go to Cardi’s furniture.  I’m desperate- I’ve been looking for a lamp for my new desk for a MONTH.

Mom:  I HATE that place.  They stalk you and follow you around.  They told nana she had to have someone with her when she went in there!

Me:  Well, THAT’S creepy…

Mom: I KNOW!  Let’s just sign the whole time, pretend to be deaf mutes, and they’ll leave us alone!

Me: BRILLIANT!

It’s always super fun to pretend to be stone deaf and then shock the crap out of people when I speak.

Late one night on text:

Josh:  What do you think are the odds mom will get me Taco Bell on her way home from work?

Me:  Er…She’s not so good with the drive thru and that’s the only thing open now, yes?

Josh: I really want Taco Bell.

Me: First, ew.  But, sometimes she drives up to the speaker, waits until she hears SOMETHING (or not), yells, “I’m deaf, I have to come to the window!” and just drives on.  Sometimes I can still hear them yelling as she’s driving away.

Josh: Ok, so, maybe no.

A few days later….

screenshot

I’m pleased (for my brother) to report that this one was a win, people!

When your parents are deaf.

First, a couple of items of business.  Numero uno:  I am incredibly honored to have been freshly pressed (that sounds like I was run through a juicer), and I am touched and humbled by the responses I have gotten and those of you who have started following this little blog.  Thank you for reading and for all of your comments – some that made me tear up, some that made me laugh, and one that, admittedly, was pretty gross (to be fair, there was a fart reference in the post in question, so I’ll let it slide). Numero dos: I am recovering from a nasty flu-like virus as I write this.  So, any errors, let’s chalk it up to the Dayquil, shall we?

Now, let’s talk about the good stuff.  No, not the GOOD good stuff.  I’ve told you before- my grandma reads this.  I want to talk a bit about what it was like growing up with profoundly deaf parents.  I’ve never intended for this blog to be about the deaf/hoh experience, but I never thought people would be terribly interested.   Apparently, I was wrong, so, when the mood hits, I’ll continue to write about it.

A while back, I had the following conversation with my cousins.

Lily (Age 12):  So, I invented this thing called sledbagging.

Me (attempting to hide laughter at name of  said invention):  What the heck is that?

Maddie (Lily’s sister, age 9): Basically, you get in a sleeping bag and slide down the stairs.

Me:  What?! Doesn’t that hurt?

Maddie:  Not as much as the laundry basket! That was Lily’s first idea.

Me:  Lily, what the heck are you making Maddie do this stuff for?

Lily:  Do I LOOK dumb enough to try this stuff first?

I, too, forced my little brother to do a lot of questionable stuff, my favorite of which was tying tomato stakes to his snow boots and making him “ski” down the rocky hill in our backyard (no, it didn’t work).  I got away with A LOT because my mother couldn’t hear me plotting and planning.  Nor could she hear the screaming that ensued when my plans went awry, as they inevitably did.

My brother is completely hearing and as a child my hearing was not as poor as it is now, so I suppose you could say that we were hearing children raised by deaf parents.  I’ll preface this next sentence with a “sorry, mom!” but we cashed in on it in every way, shape and form possible.  That’s right- these two innocent looking kids=hellions.  I think I was acting out because I was resentful of my damned hair (I hadn’t heard of frizz ease yet).  Or maybe I was just a brat.

The hair! The sweater!  But look how cute Josh was.  You can clearly see how he got away with everything.

The hair! The sweater! But look how cute Josh was. You can clearly see how he got away with everything.

What, exactly, did we do? We talked back under our breath (I’d be an awesome ventriloquist- you can’t move your lips- deaf parents lip read), we snuck out of our rooms at night and hid behind the couch in back of them watching TV we had no business watching, we hid out in the attic that we were expressly forbidden from entering, snuck out of our rooms while grounded, we would talk to each other from our bedrooms at night, listen to music when we were supposed to be quietly doing our homework or “thinking about what we did,” etc.

I have a really bad microwave track record.  The first microwave (yes, I said the FIRST) I ever set a fire in, my mother was downstairs on the computer and Josh and I were upstairs trying to make popcorn.  The bag burst into flames and we started screaming like maniacs.  I unplugged it and we ran back and forth from the sink to the microwave, putting out the fire.  When my mom still didn’t appear, we cleaned it up and I sprayed her perfume ALL OVER THE KITCHEN.  It was like a Perfumania detonated their version of the atom(izer) bomb.  She came up shortly after we’d repaired the damage, sniffed the air and said, “Have you been playing with my perfume?”  That’s right.  I set a kitchen fire as a child with my mother in the house, she wasn’t asleep or in any other way unconscious, and I got away with it.

Our house was always super popular on Halloween.  It wasn’t because we gave out full-size candy bars or we had fabulously creepy decorations.  On the contrary- my mother loathes halloween.  It really wasn’t her fault we were inadvertently ready for it 24/7, 365 days a year.  Whenever the doorbell rang, the phone rang, or the alarm clock went off, the lights in the house would go on and off, the bed would vibrate (I know, I know- there isn’t a joke on the planet I haven’t heard about THAT one), and an extremely shrill noise went off in short, staccato blasts.  Depending on how many times/in what pattern this occurred, my parents could tell what was happening.  Essentially, we had several elements of a haunted house without even trying.

Sometimes, it would be a bit of a party trick to show off my parents.  It broke the ice.  Whenever I had a new friend over, I’d demonstrate the joys of having deaf parents.  I remember my dad in the kitchen chopping zucchini when my friend Melissa came over for our first playdate.  We ventured to the kitchen and facing his back I said, “I HATE zucchini- that’s all we ever eat!”  He kept on chopping, completely oblivious, and her eyes bugged out of her head.  I actually LOVE zucchini, but apparently, that was irrelevant.

I wasn’t all evil.  I helped a lot.  I interpreted endlessly, I made phone calls that no one would expect of a child who hadn’t hit double digits, and I learned tolerance from a very young age.  I had my heart broken, too.  When you learn about tolerance, you must also learn about intolerance.

In Helen Keller’s time and long before, deaf people were labeled “deaf and dumb.” What we don’t realize, perhaps because many people have not met a deaf or hard of hearing person, is that the attitude persists today.  I’m not talking about the people who have lost a little hearing as they age and go to the mall for a Miracle Ear.  I’m talking about people like my mother, who didn’t hear a thing until she was two years old and got her first hearing aid.  She’s amazing.  She underwent years and year of speech therapy and you can hardly tell she’s deaf when she speaks.  For a profoundly deaf person- holy crap.  I can only hope that if I have children, they will grow up to be tolerant, even if the world itself is full of ignorance.  And they better watch out.  I know all the damn tricks.  And mom, don’t even THINK about encouraging them.