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.

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.

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.

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:

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

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.

 

 

 

Where I Come From.

It never fails that when you ride in a car with my grandparents, you’re privy to bickering that has endured for as long as I can possibly remember. Utterances of, “Backseat driver!” from my grandfather, and “Frank, slow down, the kids are in the car!” as my nana grabs the handlebar above her head can and should be expected. It is not nasty fighting. It is hilarious. It is anchored in affection. It is a part of the script that they have written together over more than fifty years of marriage.

My grandparents met at a dance social in the fifties. He is first generation Italian. She is Irish. My grandmother claims he spilled Coke on her, but he contests that particular memory. Personally, I’m in Nana’s camp because, really, how endearing is that? However they came together, they met and fell in love, although both of their parents weren’t enthusiastic about the Irish/Italian part of the whole thing. They married in 1957.

In 1958 my grandmother had my mother, the first of five children. Those five children married and had eight children of their own. On their fiftieth wedding anniversary, my grandfather stood at the party we threw for them, raised his glass and said, “Fifty years ago this morning, my mother came to me as I got ready and told me, ‘Frank, you don’t have to do this.’ Looking around at all of you, I’m very glad I didn’t listen to her.”  I once asked my nana what it takes to make a marriage last successfully for so long and she said to me, “When you want to leave, don’t!” At the time, I thought it was funny, but in hindsight, like so much of her advice to me, it resonates.

I spent much of my childhood in my grandmother’s kitchen, stirring lovely smelling things and absorbing knowledge almost as fast as I inhaled her cookies. I could make marinara from scratch by age eight. Nana told me more than once that she wanted me to learn these things NOT so that I could cook for a husband, but for myself. She wanted me to learn to be independent and strong on my own—to be my own advocate. She’s opinionated and won’t hesitate to tell you her views on everything from Sex and the City(“Mr. Big really isn’t good looking outside of that character, you know. I saw him on Law and Order and he isn’t very attractive. I think it’s the mystery.”), to great literature and World War II.

My grandmother and I share a love of Scrabble. It’s our thing together–my grandfather isn’t big on it. My grandmother once joked, “If only he’d play Scrabble with me, this would be a perfect marriage.” Now that she is in Florida for the winter, we play “Words with Friends,” which often leads to hilarious and occasionally confusing troubleshooting text messages and phone calls.

She was right. I was also in a different game.  HA!

The alerts that she’s played a word keep me feeling connected to her- she and my grandfather are my touchstones. They’ve been married fifty-five years on my 29th birthday  and they are the glue that holds our family together.

I visited them when they came home over the holidays, and I sat at their kitchen table, as I have done so many thousands of times in my 29 years. I remembered the time that I sat watching them cook together and my grandfather told me, “When I met nana, she was 100 pounds soaking wet!” My grandmother playfully swatted him and declared indignantly, “I was not! I was 102!” He patted her affectionately on the butt and gave her a quick kiss. I remembered the times I snuck up behind the kitchen sink when one of them was doing dishes and squeezed the sprayer while the faucet was running. There have been countless games of gin with my grandfather, mancala with nana, art projects, dinners, celebrations… it’s all there. There are so many things that seemed so inconsequential at the time, but now seem poignant and important pieces of our family history and my own.  And nana and I?  We played Scrabble face-to-face.

I don’t believe in resolutions.  I believe in constantly seeking self-awareness, enjoying the world around you, and waking up each day and deciding what sort of person you want to be, just as you make your to-do list of tasks to complete, and I believe in being grateful every single day.  It’s entirely too easy to take things in our lives for granted.  This year, I’m aiming to wake up each day and give thanks for the important things–even Words with Friends games.

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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.

Why even the small stuff can and should be unforgettable.

I won’t offer some trite “sorry I’ve been M.I.A.” crap, because, well, it’s been a great summer and I’m not sorry.  Nor am I so conceited that I think anyone’s been chomping at the bit for me to post again.  I am at my best when I write because I want to. Not just to put something up.  So, without fanfare, let’s proceed.

There are some stories that become legendary- that we tell over and over, perhaps embellishing them a bit over the years and taking liberties. Sure, I remember that when I was in first grade, I bit a kid (Totally justified! Maybe. Not.). I remember when my friend Adam told me he spit in my apple juice (LIAR!) and made me throw up in the school cafeteria when I took a sip and saw bubbles that looked like spit bubbles (tres humiliating). Yeah, first grade was a rough year for me. *****cue Barbara singing “Memories.”***

On a random note: I’m glad she kept her nose. Jennifer Gray should’ve learned from Babs.

Legends aside, there are those little, lesser known and sometimes never acknowledged again moments that happen day-to-day and while no less meaningful, can so easily fade into the background and be forgotten. Our lives are made up of sequences of single minutes- some more vivid in our minds than others, but altogether, the sum of our existence.

Someone I admire deeply has a philosophy about appreciating every single minute you are given, no matter what. She says (while giving tirelessly of herself) that our lives are finite and our time is too special to squander- it’s the most valuable thing we have. I find myself wanting to live by these words, especially when I find myself wishing away days when I have something to look forward to on the weekend, when the work day just won’t end, or I stand in a particularly long express line, noting that the person in front of me appears to be stocking up for a nuclear Armageddon. Then I think to myself- it will never be August 29, 2013 at 4:30 (or whatever) ever again in the history of the world. It seems so silly, but it helps me slow down and appreciate it a bit more.

So, as I went into the New Year, I didn’t really make resolutions. New Year’s resolutions make me insane- I like to do things no matter what time of year it is, but I decided that I wanted a way to remember the day-to-day stuff. I’m talking about the things that make my days a little brighter- both big AND small. I reasoned that in the grand scheme of how I experience joy, laughter, something profound, or simple enjoyment, it doesn’t matter how significant or insignificant seeming something actually is- who cares what it is if it makes you happy?

So, I started the memory jar. Not a new idea, I know. I’m not claiming I’m the genius behind it. Anyway, I trekked to West Elm for a suitable vessel, I gathered up what felt like a meeeellion paint chips (when you’re smuggling them out of Lowe’s and Home Depot in stacks, it feels like a million, trust me), some gel pens (don’t do this- they smudge. Get a sharpie pen- there. I just saved you about fifteen bucks.), and “the jar” was born.

A fun outing? Something crazy/funny/ridiculous/monumental happens? “That goes in the jar!” It’s actually become a mark of pride when someone gets in the jar (don’t worry, GG- you’ll get in!). Major kudos to my dear friend Pauline, who simply DOMINATES. Also making appearances: concert tickets, museum tickets, fortunes from fortune cookies, a couple of especially meaningful cards, confetti from the Pops Fourth of July Rehearsal, and a few other little trinkets.

MoMA ticket, Mumford and Sons Ticket, cards…and a little
recounting of an embarrassing ski incident…

I can’t always keep up with things. I have a running list in a mini notebook waiting for transfer to the paint chips, but it’s really fun to look back and see what’s happened over the year, look at the little things that I would have otherwise forgotten, relive it, remember where I was and laugh. The time it takes is well worth it to make those little moments unforgettable and reminds me to appreciate and reflect on things I may have otherwise forgotten or taken for granted. Well, that, and many of my friends have DIRTY senses of humor.

Scenes from the Fourth of July

First, I’ll acknowledge that things are looking a leeeetle bit different around here.  I’m still tweaking things and will eventually design my own background, but I’m hoping that these changes will make reading my blog just a little easier on the eyes for you guys.  Please do feel free to let me know what you think (Even if you hate it- tell me!  I’m not a delicate flower and your feedback is helpful).

So, I’m actually cheating a little with this whole, “Images from the Fourth of July” business.  Yesterday, I was lucky enough to get to attend the Boston Pops rehearsal for the Fourth of July and lo and behold, I had tickets for front row seats!  Every year, the Boston Pops performs, accompanied by various celebrity guests, at the Hatchshell on the Charles River.  This year is the fortieth anniversary of the tradition.  I suppose you could say that the birthplace of America likes its traditions.

Evidence! The only thing between us and that stage? A guardrail and some concrete. Primo seating!  You can see the Hatchshell really well.

The Pops run through the concert just as if it was the “real” Fourth (short a couple of songs), do the sing-a-long, and Keith Lockhart, our beloved conductor, charms the hell out of all of us (how many symphony conductors do you know of who will playfully step back towards the crowd and do a jig while continuing to conduct over their shoulders?).

Keith Lockhart dances a jig while the Pops perform “I’m Shipping up to Boston” by none other than the Dropkick Murphy’s (who just so happen to be a Boston band)

This is our first HUGE event since the Marathon, so you can bet emotions were high and somehow, it seemed just a little more meaningful to be a part of the tradition this year.  So, happy Fourth of July and here are my pictures from the 3rd (and then some)!

From top right: Ayla Brown, Ellis Hall (first and only performer ever signed to Ray Charles’ record label), Howie Day, and Susan Tedeschi

Here’s the stage all lit up- complete with the Tanglewood Chorus

SURPRISE! The flag came down and the confetti cannons rang out.

We knew we weren’t getting the crazy fireworks display and the cannons they shot during the 1812 Overture (which is GLORIOUS and usually the background for the fireworks) were more “give you a freakin’ heart attack if you weren’t watching the TV screen and didn’t know it was coming” than fun, so it was a pretty cool surprise, when the confetti rained down!

Despite the fact that I was fishing confetti out of my dress when I FINALLY got home, it was incredibly worth it.  It was way less insane than it will no doubt be for the real thing, but the spirit of the occasion was still very much present!

As for today, the actual Fourth of July?  I picked a whole bunch of these with my mom:

Black and red raspberries!

So, I’m going to scrub the stains off my knees (yes, I knelt down in some that had fallen on the ground- classic Jenny move), figure out what the heck to do with them, and eat some veggie burgers. Tomorrow kicks off a busy weekend of celebrating with friends. Happy Fourth of July!

On Equality.

civil rights

Noun The rights of citizens to political and social freedom and equality.

I think most of us hear “civil rights” and think Martin Luther King, marches on Washington, sit-ins at the Woolworth counter, and countless other images of the 60’s.  We think of race, and perhaps class and gender.  When learning about the Civil Rights Movement in elementary school, I was taught that separate but equal was an outdated and prejudiced idea. I was taught that all Americans are entitled to life, liberty and the pursuit of happiness and that this country was founded on the ideal that we are all are created equal. I said the Pledge of Allegiance every morning, along with the rest of the schoolchildren in this country, declaring “with liberty and justice for all” before I started my day.

Then I grew up and realized that as much as we are all probably taught that these struggles for civil rights are a part of our history, they are very very much a part of our present.  I understood the meaning behind that Pledge of Allegiance I said so mindlessly every morning for more than a decade, with my hand over my heart.  I learned that the American brand of equality is conditional.  

Growing up in a household with deaf parents, the motto was: accept everyone.  One of the most valuable things my mother instilled from an early age was the importance of tolerance and equality. She continually reminded us to treat everyone the same, because we are all people.  It’s such a simple message, but it’s a powerful one.

I went to an all- women’s college.  I work for it presently.  I have many friends and colleagues who are gay and lesbian.  I am incredibly proud to live in Massachusetts, where we have been granting gay marriages since 2004- the first state to do so in this country.

As far as I am concerned, there is more than one civil rights movement.  Today we watched one of those play out in what will surely go down in history as a pivotal point in the fight for LGBT equality.  When I read that DOMA is dead, I cried.  It’s progress.  It’s progress that should’ve been made long ago.  It strikes down a despicable legacy of discrimination known as the “Defense of Marriage Act,” signed by a President who had about as much respect for his marriage as I do for Scientology (read: ZILCH.).

The Supreme Court decision today gets the federal government OUT of people’s bedrooms.  It tells children of gay couples that their parents are not weird or wrong to love each other and that the family they’ve forged is just as valuable and meaningful as the one with a mom and dad.  It tells gay and lesbian couples that their relationships will no longer be considered unworthy of the same protections and respect by the country in which they probably pay taxes, vote, and contribute to society.  It means that loving couples can express their commitment to each other in the same way that I can.  It means that they can enjoy the same legal and financial protections as heterosexual couples.

If there is ONE thing I have learned in life it’s that you cannot choose who you love.  Gay or straight- doesn’t matter.  You love who you love. So, a hearty thank you to the five Supreme Court Justices who decided that we will no longer SELECTIVELY grant our citizens the rights to life, liberty and equality (to the remaining four- I say, “HA. Nice try. And Clarence Thomas of the Anita Hill scandal- I can’t say I’m surprised.”).  It’s a huge step in the right direction in an ongoing fight.

It’s been a banner day for Civil Rights today.  Thanks to the incredible fortitude and bravery of Wendy Davis in Texas (of all places!), women there will go to bed tonight knowing they’ll wake up on more days of NOT being told what they can and can’t do with their bodies.

This fourth of July, there is so much to be thankful for.  I’m proud to live in this country today- slowly, but surely, we are working towards making the words “liberty and justice for all” ring true.

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.

When I Went to the Big Apple.

Although as a Boston resident and New Englander, I’m contractually obligated from birth to root for the downfall of the Yankees, I really love visiting New York City.

View of Empire State Building from my friend’s apartment approximately 2 minutes before the sky opened up.

Mostly, I stick to Manhattan and Coney Island (Mermaid Parade, anyone?), so when my friend got us tickets to see The Postal Service at Barclay’s Center in Brooklyn, I was pretty psyched.  I had a great time in NYC, but full disclosure:  A LOT went wrong (I’m a disaster magnet)- from me forgetting my phone on the way to the train station at 5:15 a.m. to breaking various things, including my ass (ok, tailbone, but let’s call a spade a spade).  At one point, I said, “Screw it.  I’m going to just enjoy the good stuff, because what the hell else am I going to do?”

I figured I’d give you a little peek at exactly how the weekend went.  I give you….(dramatic pause)….my travel  [b]log.

Thursday

Night:

Start packing to head to friend’s (Melissa’s) house, realize iPad is missing.  Have complete and total meltdown, head back to office at 10:30 p.m. in pouring rain, search in vain.  In midst of ensuing pity-fest when “Find my iPad” refuses to work, allow Melissa’s boyfriend to lure me to their place, with promise of wine.

Friday

5:15 a.m.: 

In taxi realize forgot cell phone.  Cab turns around, tacking four bucks on meter.  Taxi driver most certainly going for world record in slow taxi driving.

 6:15 a.m.:

6 a.m. bus finally starts boarding.  OUTLET WORKS- HOORAY! Seatmate questionable smelling- BOO!

6:20-12:00 p.m:

Read trashy books on Kindle entire bus ride- can feel brain cells dying.  Four hour ride turns into six. However, THIS bus doesn’t catch fire, like the last time I came to NYC in June.

Exhibit A. June 2012. During a lovely heat wave. 

12:20-1:30 p.m.

Camp out at friend’s in Manhattan and call nine different stores asking if they have iPad to no avail.  Want to go back to Boston to throttle idiot at Lucky Brand, who said, ”YES…unfortunately, we DON’T have an iPad.”

1:30 p.m.-3:30 pm

Walk mile and a half to MoMA.  Finally, things looking up.  Pay 25 bucks and let MoMA soothe me.

Take particular interest in this painting, as it seems an accurate summary:

Read/Reap (Bruce Nauman, 1983) had me rethinking my earlier choice of reading material…guiltily.

Enjoy some other faves:

From upper left: 1 of six prints: Art and Agriculture, Liam Gillick, 2011; Marilyn Monroe 1, James Rosenquist, 1962; Girl with Ball, Lichtenstein, 1961; Piet Mondrian, Composition with Red, Blue, Black, Yellow and Gray, 1921; Claude Monet, Waterlilies, 1914-26; Vincent Van Gogh, Starry Night, 1889…

(To browse check out this link to the ENTIRE  amazing collection.)  I’m a wimp and don’t want to get a license infringement notice, so you’ll have to settle for these and this link.

3:30 pm

Meet back up with Melissa and walk mile and a half back to friend’s apartment.  Get scathing looks/comments for suggesting it was just around the corner.  Apparently, “just around the corner and a mile and a half away” would have been more accurate.  (SORRY, M!)

4:00 pm

Stop at gluten-free bakery for Melissa to soften her up.

This got two big thumbs up from Melissa- lots of butter, apparently. If this means anything to you- it’s at the corner of 39th and Lex.

5:00 p.m.

Leave Manhattan for Brooklyn.  Caught in torrential downpour.  Have worst fall of life walking into subway (and I was a figure skater and I’m a crazy skier), humiliate self.  Take five minutes to stand up without throwing up or passing out.  Determine will live and can remember vital details about self. Gingerly make way to Brooklyn and Hotel Indigo.

5:30-6:30 p.m.

Settle in at Hotel- which is fabulous.

Who needs a real chandelier when you can have a trippy giant mural of a chandelier close-up on the ceiling? This was perfect for a girl with a head injury.

Attempt to do yoga to stretch back.  Catch view of ass in full length mirror in Downward dog.  Cringe.   Passive aggressively banter about what to do for dinner before show.  Finally decide to wing it.

 7:00 p.m.

Realize will miss opening act, decide to get good dinner instead.  End up at Turkish place with vegan/veg/gluten free options for everyone.  Eat best falafel of life.  Things DEFINITELY looking up.  Told by waiter, “I will never forget you.”  Melissa retorts: “She gets that a lot.”  Unsure if this is a compliment.

8:50 p.m. -10:30 p.m.

Barclay’s for The Postal Service Concert!  Take seats with view of Ben Gibbard’s backside.  No one complains.  General agreement that NY show was 98697687687 times better than Boston.

Home of the Brooklyn Nets- Barclay’s! By the time The Postal Service came on, this place was packed to the rafters.

Objects in picture were closer than they appear. The energy was electric and the sound quality was unparalleled! It’s times like this i am so thankful for the hearing that I have.

10:45 p.m.

Target trip for Aleve- starting to really feel that fall in an unpleasant way.  Luckily, store closing, only buy Aleve and not useless crap.  Walk back towards hotel and take in a few sights.  Melissa in instagram heaven.

For more information on Art in the Streets, click on image.

 11:30 p.m 

Hit neighborhood “hip” bar.  Highly suspicious when bartender has no idea what a whiskey smash is.  End up with decent drink and people watch.  Conclude that I could show up dressed like a cross between Katy Perry and Liberace and no one would bat an eye.  (P.S. If anyone knows an app that could create this image, do let me know.)

3:00 a.m. 

Bed!  Take several aleve in the hopes will be able to move in morning.  Not optimistic.

Saturday

10:30 a.m. 

Schlep creaking body into scalding shower, emerge somewhat more mobile.  Pop more Aleve.  Discover gold earring fell out of ear at some point.  Cannot locate.  Still beat Melissa in the getting ready to go game.

I am ALWAYS ready before she is, but this is because her hair isn’t hopeless and she can do more than throw it up, in her defense.

11:45 a.m.

Check out of hotel, leave name in case earring located.  Not optimistic.  Head to Union Square/14th Street for Farmer’s Market.  Have best apple juice of my life and strawberries so ripe could smell them before spotted them.

Eat this sandwich, made on a park bench with purchased ingredients from said Farmer’s Market.

With this view of Union Square Park.

2:30 p.m.

Revel in nerdiness and hit “The Strand.” Predictably, purchase tote bag designed by Kate Spade and book of short stories by F. Scott Fitzgerald (“Flapper and Philosophers”).

3:00 p.m. 

Head to Central Park.  Miscalculate distance.  FINALLY get to Sheep’s Meadow.  Lots of picture taking ensues.

Bonus points if you can spot half naked people- there were A LOT of them.

To end photo shoot, do best impression of a Sears Portrait Studio Glamour shot:

Notice how the light reflects off of BRIGHT WHITE SKIN. Sheeesh! I look radioactive.

Resolve to get a little sun.

5:30 p.m. 

Head to Penn Station at mercy of kamikaze cab driver.  Emerge relatively unscathed after harrowing trip through Times Square.

Somehow, I made it through the weekend- I was still in one piece, I managed to have a great time, and that, as they say, was that.  A four hour train ride, plenty of pineapple (and dirty jokes), and we were home, sweet home.  I hope your weekend was as zany and fun as mine!

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.  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.