Browsing Tag

deaf

Binders, Guest Posts, Hearing Loss

Owning—And Rocking—An Invisible Disability

September 10, 2016

By Caroline Leavitt
Shortly after I have my son, I am mysteriously ill with a rare blood disease for almost a year. The meds they give me are toxic, some of the treatments are experimental, (a surgeon uses a robotic arm to glue my veins shut, letting me watch it all on a big screen), and when I finally begin to get better, the doctors tell me there might be lasting side effects. I might bloat out and look obese. (I beach-ball out so my comfort fashion is mumuus, but after a year, I can slide on my skinny jeans again.) I might lose my hair. (Chunks roll off my head and onto my baby, but it sprouts back curlier and stronger than before.) My skin might turn gray. (It does so that people on the subway bluntly stare, but it, too, comes back to normal). And I might lose some hearing and that wouldn’t come back. Sigh. That happens.

At first, because I’m so busy getting well, and taking care of a brand new baby, I don’t notice I lost anything. Not until another six months later, when I’m a giving a reading with two other novelists in front of a packed audience, and one of the other writers nudges me. “They asked you a question,” he says, nodding towards the seats. Panicked, I search for a person standing up, head tilted, waiting. I haven’t heard a question at all, and lucky for me, the person repeats it loudly. Still, I feel my cheeks fire with shame. I can’t look at the other writers, and even though they ask me to lunch afterwards, I make up some excuse.

I tell no one about that day. Instead, I begin to be hyperaware of my hearing and I sink into despair. I’m deeply ashamed. I don’t know anyone who has a hearing issue except for my mother-in-law, who is in her 80s. Comics make fun of hearing loss. People think you are being deliberately stupid. Continue Reading…

Guest Posts, Hearing Loss, Jen Pastiloff, Jen's Musings

Losing My Hearing.

January 10, 2016

By Jen Pastiloff

The natural history of this archipelago is very remarkable: it seems to be a little world within itself. —Charles Darwin, “Voyage of The Beagle”

After my father died, we left New Jersey with its death and dying and cold winters and fled to Southern California. We were the three of us in a station wagon—my mother, my sister, and I, and it was a simple case of “should we turn left or right?” Which, I’ve come to realize, is the way most of life works.
Door number one: you stay in college, wear turtlenecks, work in a university. Door number two: you drop out of college, run for three hours a day, wait tables. (And turtlenecks, they’re the devil.)

Turn right: he does drugs “one last time” and dies. Turn left: and there he is on the sofa in his frayed cutoffs and we never make the trek to California.

So a should we turn left or right happens and we choose left instead of right and end up in Santa Monica, where we live next to a man, his two daughters, and their beagle, Darwin, whom they keep locked up in a cage.

Darwin was a mean little dog. But hey, I might be mean too if I was confined all day to a small metal prison inside a dark kitchen. His bark was anxious, filled with accusations. I can see now how lonely he must’ve been in that little box. The kitchen empty, the lights out, and Darwin sitting in his own piss. I’d be angry too. Continue Reading…

loss, love

Modern Loss.

December 11, 2013

I have a piece up on a new and amazing site called Modern Loss which has candid conversations about grief. It’s truly beautiful.

Here’s an excerpt of my piece:

I’m in a yoga class with my forehead pressed into the mat — this cheesy orange mat with a giant sunset and a backlit tree branch — and my friend Steve Bridges is saying “Hi Gin.” A transplanted Texan, Steve says my name, Jen, like I’m booze. And he’s talking to me during yoga.

The thing is, Steve is dead.

“Steve, it’s Jen, not Gin. I hate gin. At least call me Wine.” We used to laugh at that.

Click here to read the rest.

Click photo to go to Modern Loss and read the piece.

Click photo to go to Modern Loss and read the piece.

Hearing Loss, Self Image

Dreaming Perfect.

June 10, 2012

Last week I had this dream I was perfect.

I was tall and leggy. I had sweet, brown-colored skin and light eyes.

I had perfect hearing.

There was no ringing in my ears, so when you told me things like: Your coffee is getting cold or My name is … or I love you ~

I understood you.

I was happy in this dream.

Of course, I didn’t realize I was happy.

I woke up and tried to get back into the dream, but, as you know, that is impossible.

I almost got there, but in the new version of the dream I was short and fully deaf, instead of partially. Everything else was the same as the first dream.

I thought about the dream all day.

I realized later that day that maybe I wasn’t happy in the first dream, after all. Maybe I had just assumed, in that brief moment when I woke by my alarm, and I couldn’t get back, that I had been happy, since it’s our nature to assume that what we can’t have is better.

I have gotten over my height, my skin color, my weight, and the fact that light eyes got passed over on me.

I have not fully accepted my hearing loss.

Oh, what it would be like to hear a whistle!

A bird. Ice clinking in a glass. The television. My own yoga teacher. My own breath. Someone saying my name as a whisper.

As I sit here and listen to the ringing in my ears that never goes away, I fall into a state of meditation, as if my tinnitus were actually a constant “Om” in my head instead of torture.

Then it hit me like a ton of bells ringing. This package of me, the sum total of all my parts, is greater than my hearing loss. I am normally terrified of equations, but as soon as I stop and think about the mathematics of myself, I know that I have accepted my loss indeed. I realize that this profound hearing loss, which causes me so much pain and aggravation—so much sadness and loneliness—also causes me so much love.

I had never thought of love quite like that. As if it were an effect that had been caused by something. I always thought it was just something like the weather—it just was. Like love just appeared one day like the wind, and we accepted it as Nature just doing its thing, running its course. We don’t question love most days. I love my mother, I love my husband, I love my students. It just is. This I know.

But there is a cause and effect.

My hearing loss has caused me love because people have been drawn to my compassion, which is my loss transformed. I have been able to turn my deafness into my grace, and that grace has opened me to love I never dreamed possible.

So today I change my mind. I accept this thing about myself that I once hated. By doing that I allow other things about me to shine. Those things, like my sense of humor and my touch. My vision beyond what my eyes can see, and my kindness. My philosophy of “If you fall you must laugh” was born out of not being able to hear. You can’t take life too seriously.

I mean, how can you, when you can’t hear most of it?

My hearing loss has allowed me to laugh at myself, which in turn has allowed others to laugh at themselves.

What a gift!

I had a dream last night and I was me in the dream. Regular old me. Mostly deaf, kind of clumsy, hazel eyes, pale skin, silly. In it, someone leaned over and asked me if I was happy.

I laughed and said Of course I am happy. Why wouldn’t I be? Now pour me another glass of wine.

~~~~~~~~~~~~
**Post originally appeared on Positively Positive where I am proud to be a regular contributor.

Jen will be leading a Manifestation Yoga®  weekend retreat at Kripalu Center for Yoga and Health in the Berkshires, Massachusetts Feb 1-3, 2013. 

 

Guest Posts, Hearing Loss, Inspiration

You Never Know Who You Are Touching. So Keep Going. Keep Going.

May 28, 2012

I reposted my blog called “What Are You Up Against?” yesterday. In it, I talk about how we are all up against something. Mine happens to be hearing loss.

Someone who takes my classes regularly emailed me this today and it was so moving to me that I had to share. Take a minute and read. My heart goes out to her son.

Keep going guys. Even when you think no one is listening, keep going. Someone is listening. They always are.

Sometimes they just don’t hear it for a while, is all.

Hi Jennifer,

Wow. I just read your post “What Are you Up Against?”. You mentioned your hearing problems in class but I never knew the details. Wow.

As you say…BAM. Your post hit me really hard.

My 7 year old Jackson has intermittent hearing and a life full of ear problems. He’s had 8 surgeries…3 major surgeries and 5 sets of ear tubes. Rare conditions that caused multiple hospitalizations. At age 5.5 we couldn’t get an infection in his left ear to clear and a rare condition called mastoiditis developed. The infection went into the bone behind his ear, at the base of the skull.

I won’t even explain the surgery and treatment it required. I do remember sitting in the hospital looking at him with his head completely wrapped in bandages, a small section by the left ear blood tinged, thinking…what the F_ _ _ is going on here.

He was just finishing preschool and I discovered that he got by during his last year by reading lips. His teachers would say he was extremely bright and successful. But as I observed him I realized that for 2 years straight he had the exact same routine (circle time, bathroom, snack, recess, work time…) and he could follow it in his sleep.

He couldn’t hear ANYTHING.

He became the leader on the playground, always organizing all the games. Why? Because he couldn’t hear what anyone else was saying. If he was in charge then he knew what to do. Every time I uncovered something else my heart sank.

Fast forward two years later to today…Is he a different person because of it? Absolutely.

And he’s only 7.5.

We keep hitting road bumps where he is thrown back into a 2 month period of infections and not hearing. I have driven all over LA trying to figure out the root cause. The best surgeons tell me they don’t know and they hope he will grow up with no long term damage but we don’t know for sure.

Jen, my heart goes out to you. I watch Jackson on the soccer field after the coach tells him to do something… he immediately looks over at me with a look of pain. It doesn’t matter how many times I talk to the coach they still get in his face and say, “Jackson! Why are you not listening to me??!”. If I were him I would run off the field crying. But he swallows hard and keeps going.

If only I had that perseverance. Jen, I admire you deeply for your ability to keep going.

~~~~~~~~~~~~~~~~~~

You see hy teaching is so comforting to me? Why standing up in the front of the room is so much more empowering for me than when I am in my teacher’s class and I cannot hear a word and I feel lost and disempowered?

I am so grateful for this 7.5 year old to remind me of who I am and why it’s so important to keep going.

Hearing Loss

The Born Identity.

February 11, 2012

I sleep a lot.

When I was in Philly, I stayed with my friends in Chestnut Hill. Their 5 year old Jack thought something was wrong with me because he had to pry me out of bed in the morning. “Is it because California has a different time zone?” he asked me.

He’s pretty smart.

It’s kind of always made me feel ashamed how much I like to sleep. How much I need sleep. Busy people, successful people, (at least the ones I know), do not take marathon naps like I do.

It dawned on me lately why I require so much. Why I get so tired.

I work hard.

Yea, yea, we all work hard.

I work hard in a different way. I realized in the last few days, as my hearing has gotten much worse for whatever reason, that I have been wanting to hibernate more than usual. I have been avoiding the phone.

The reason?

It’s too much damn work.

I have to struggle to hear and keep up and make sense of what’s going on.

No, I am not fully deaf.

My hearing is distorted and I have tinnitus. I hear sound but I cannot make out what that sound is, for the life of me.

Imagine talking underwater. Imagine someone talking with a sock over their mouth.

I cannot watch tv without subtitles. I cannot hear what you say unless I look at your mouth.

It gets old. It gets boring. I get very tired of having to tell people. I get really over myself at making bad jokes about it.

I get scared that it will get worse and worse.

I try not to get scared that it will get worse and worse.

(The truth is, any worse and I will be 100% deaf.)

So I go to sleep.

It is exhausting putting forth so much energy simply to hear someone tell you their name.

So I sit here and watch The Bourne Identity with the sound turned down because I actually find it soothing, and, like good company, it doesn’t have to say a lot, just knowing it’s here is enough. Plus I have seen it 17 times.

More than anything it frustrates me. I want to hear, I work hard to hear, but frankly, whether I work hard or not, it doesn’t make a difference. It just makes me exhausted.

I am going to work less.

I accept that I cannot hear perfectly and if I miss a thing or two, well, then I miss a thing or two.

The energy I exert to be part of the world is taking it’s toll on me and whether my ears can hear it or not, I am in fact very much part of the world.

It’s taken me quite some time to understand my fatigue.

Why my friends can go and go and teach 4 yoga classes and keep going and why I need to crawl in bed and pass out? What stuff am I made of? Yikes, how am I going to be a mother if I have to rest so often?

Well, the fact of the matter is: I will have to work less in the irony of all ironies.

I must lessen the struggle. Practice radical acceptance that the things I am meant to hear will be revealed to me even if someone has to pass me a note like we are in 8th grade or text me. I have to stop pretending that I can hear and then spend 5 minutes replaying the sounds in my brain so I can make sense of them.

And if I need to sleep a little more to be the best teacher I can be, then so be it.

Now Indiana Jones is on. Still on mute. I have seen this one many times, as well.

I guess the reality is, that my life, much like these films I can watch and enjoy on silent mode, can be enjoyed without so much noise. I can probably sit back and relax a little more because whether I admit or not, I probably know what is going on. I have to trust a little more and maybe just get a really good translator.

My own born identity is that of a healer.

The older I get and the longer I have had to deal with this hearing loss the closer I get to fulfilling my destiny. I am an empath. I am a healer.

I do believe this is largely due to my struggles with hearing. It has allowed me to fine tune my other senses and become highly aware of what it means to be human.

Does it suck sometimes? Yes.

Do I feel really tired a lot because I spend 90% of the time trying to figure out what the f*ck you just said? Yes.

Do I miss jokes? Yes.

Do I miss what the yoga teacher says? Yes.

Am I happy? Yes.

Am I grateful yes?

Am I love? Yes.

That’s what it is. I trade a bit of fatigue and some struggle and some deafness for a pretty awesome life and a heightened sense of compassion.

I’ll deal with it.

Just please don’t whisper, talk to me while upside down or while in another room.

In turn, I will give up the fight and realize that when I really really need to hear you, I will.

I will find a way to hear and the things I don’t, well, my guess is that they weren’t meant for me anyway.

Just a hunch.

Daily Manifestation Challenge, Manifestation Retreats, Mindwebs

Who Would I Be If Nobody Told Me Who I Was? The I Am Question. Daily Manifestation Challenge.

October 14, 2011

What a powerful question! Who would I be if nobody told me who I was? 

I first heard Wayne Dyer ask the question at one of his conferences. Who would you be be if nobody told you who you were? in his shorts and cute little flip-flops. Holy Sweet Baby Moses, I don’t know the answer. I don’t know who I’d be. 

At that time the question blew me right out my seat. I came back fully inhabited as somebody else.

You mean I get to decide who I am? I get to say who I am in the world rather than simply letting someone tell me? What the what?

For a long time I let the people around me dictate who I was. Sure, I was dealing with depression but the constant reminder that I should smile more, that I was so sad all the time actually had the effect of keeping me in that space. Eww. So I decided that was who I was. Sad and depressed. Woe is me Jen P. And that was that about that.

I also have a severe hearing problem and before people knew that fact they would think I was an airhead, someone who was eternally checked out. You kind of start to believe it after a while. I’m just a dingbat. Enough people tell you what and who you are and what do you know? You start to decide it’s the truth! You start to accept that’s just the way the cookie crumbles.

Ain’t so! You get to decide as many times as you like just who you are. I was a waitress kind of pretending to be an actress and now I am a yoga teacher and a writer. Not pretending.

And guess what else? I decided that I am not an airhead, I simply CAN’T HEAR!

Despite what the world told me about who I was and my character I chose differently.

I just love that Einstein quote above. It makes me feel sad for someone so close to me who was abused and believed that they were worthless for a very long time.

As I said in my poem “How To Make A Life” you get to decide over and over, as many times as you like, as many times as your socks, just who you are.

I lead an exercise in my workshops and retreats where I have people finish the sentence I am _____.

You cannot finish the sentence with: I am fat, I am broke, I am tired , hungry, bored etc.

It has to be something powerful. Something that you truly believe you are despite all the buts and ifs. If you’ve thought of yourself as ” just a mom” for years (and I know many who have thought themselves that even though the “just” makes me cringe), especially if you have done that, this exercise is profound.

You are the one making the rules.

You get to finish your I am-ness with whatever you like.

Why not? You are the creator of your world.

So here’s who I am. At least today: I am a healer. I am a writer. I am inspired. I am inspiring. I am powerful.

My exercise in the workshop is a bit harder. You say it aloud and then pick someone in the room and tell them your I am-ness before you look in their eyes for 3 minutes straight, without saying a word. It’s no joke! Some people weep. Some laugh. Some want to crawl out of their skin and beat the sh*t out of me.

But all know that the person looking in their eyes sees them exactly as who they said they were.

I am.

Who are you?

Be brave.

I dare you.

Today’s Challenge is the question: Who Would You be if Nobody Told You who you were? YOu can add your response below in comments. I encourage you to finish the sentence I am ________. Fill it in with something powerful and inspiring. 

Uncategorized

What Are You Up Against?

July 27, 2011

I can’t hear you. Says your yoga teacher.

Well, if I stand really close to you and look at your lips, I can. Or if I bend down as you are in downdog and look at you upside down, maybe I can.

Gary Lightbody, Lead singer of Snow Patrol fittingly said:

” Jennifer is an awesome creature.

I was like four planks of wood

nailed together haphazardly before

I started with her and she has

somehow fashioned rubber from

wood.

We’ll, I can touch my toes now

anyway. As patient and delightful

a teacher and person you could hope

for. She’s deaf as a post though

so be prepared for some confusing

discussions whilst in down dog. If

she can fix me she can fix anyone.”

~~~~~~~~~~~~~~~~~~~~~~~

It’s funny, when I tell people that I have a hearing problem, they laugh. They chuckle as if I am pulling their proverbial chain.

And by funny I mean sort of sad. It makes me feel sad and like I want to shake my fist at God and ask Why?!!

I wish I was joking. I know people say things like that a lot in jest.  Man, I’m so deaf. I’m so blind. And then there is the ‘R” word that I won’t even write out of respect. After my nephew was diagnosed with a genetic disorder with developmental delays and his best friend has Down’s Syndrome,  I won’t even play around with that ‘R’ word.  Let’s just say that it is a word people throw around frequently to insinuate stupidity on their or someone else’s behalf. Not a fan of that usage.

I wish I was joking. I wish I didn’t have to put on subtitles when I watch tv. I wish I didn’t have to ask you to translate every line of the movie when you sit next to me in the theatre. I wish I didn’t feel relief when it turns out to be a foreign film simply because there will be subtitles and I can relax. I wish I didn’t have to ask you three times what you just said. It makes me feel sad and alone and like I have to explain that, No, I am not an airhead, I just cannot hear you.

I wish that I didn’t always have to be in the front of the yoga room just to half-hear what the teacher is saying.  I wish I didn’t have to keep my eyes open when the rest of the room closes theirs. I wish I could hear you whisper. I wish I didn’t feel like such an outsider most of the time.

I will tell you this though: I am a healer.

My hearing loss has given me the ability to feel things deeper, to hear with my hands and my eyes and my heart a little more strongly. To quote ‘Avatar’: I see you.

I was in denial for many years. I would not accept that I had a hearing problem. When I was in my 20′s the idea of wearing a hearing aid was equal to me wearing head gear as a teenager: something I wouldn’t be caught dead doing. And yes, I had head gear. I wore it at night. Sometimes. Anyway, I used to say I would rather be deaf than wear a hearing aid. Ego? I’d say so. Now, if I could afford one, I would wear one in a heartbeat. Big or small. I would wear ten of them.  ( My friend amazingly started a campaign to get me one since insurance does not cover them and they are ridiculously expensive.)

I miss hearing the wind.

I had trouble with my ears as a child. Chronic ear infections, tubes in my ears, inner ear damage. The doctors told my mother that I would most likely have hearing loss. It has progressively gotten worse. I also have tinnitus. Nonstop ringing and humming and hissing. Nonstop. Never goes away. Ever.

I wrote a poem a little while back.

The Secret Lives of Elephants or On Being Deaf

Maybe elephants can hear mountains.

Maybe each mountain range creates a different sound,

A different tone when the wind blows over it.

A soundscape as vivid as a landscape,

Only visible to an elephant’s ears.

I am like an elephant.

With my tinnitus

I can hear the mountains talking to me.

I can hear the sun and the wind, the sky also

When no one else can.

These phantom sounds have guided me

Through the plains of my life,

From coast to coast.

And I have survived the deafening silences in between

This hissing and humming in my head.

Memories have a voice- high pitched, cricket-like in tenor.

If my eyes are closed I cannot hear the world outside,

Only the world in my head.

I read lips to guide me through the terrain,

And when the lips fail me, I am lost-

Without food or water.

And I die.

I can hear things that you can’t though.

I can feel the warrior in yoga, the curl of the back

The opening of the heart.

Even if I miss the direction.

I can hear the quiet in between the quiet

And the arches of eyebrows, the pursing of lips.

I can hear the music of unspoken gestures

the tick tock of need, the roaring of lust,

and the whining of dissatisfaction.

I can hear the tree frog sound of anger

Even though your mouth moving  in circles alludes me.

The mountains enunciate, their serrated ridges open with pleasure

And look me in the eye.

Hearing them is a breeze.

Even if my eyes are closed,

I can hear them with my big deaf elephant ears.

~~~~~~~~

What I have realized lately is that we are all up against something. This has cultivated such a level of new found compassion in me I didn’t know I even possessed. Yes, I am hard of hearing. But my nephew never feels full and has a life of challenges ahead of him.  My friend Emily has one leg. My friend is raising a baby on her own. Someone else’s mom just died. Someone else can’t find a job or do a forward fold. Someone lost their home or a loved one because of a devastating earthquake and is trying to start their life over. It’s all relative.

I want to hear you. I do. I won’t lie. It’s hard for me. I feel empowered when I am teaching but when I am in a room where I can’t hear, I feel like an invisible person. A shadow of myself. I want to not feel sorry for myself that I am young and mostly deaf.

But hey, we are all in this journey together. I have realized that this why I am a healer, why I am a teacher.

When I stopped asking why I got clear. When I stopped asking why? Why being the question at the center of the universe. I finally understood that it wasn’t the why I should be waiting for to open it’s jaws and answer. That why would swallow me whole , that I would burst into flames if I looked directly into it. It would eclipse me and never stop telling me all the reasons why.

I had started talking to drown the ringing in my head. I started singing to kill the ocean in my ears. Why was still the land of my birth. The place I hung my hat. Where I called  home. I finally got quiet and looked around at everyone else and saw that we are all up against something. We all have some sort of battle.

My fist opened and the why slipped into the sky like it belonged there.

And I watched it hover then float.

And I accepted what I was. A healer.

I started to see that the why didn’t matter.

I know what I am here for. I have recently started a new charity called G.A.M.E. Yoga: Gifts and Miracles Everyday: Free Yoga for Children with Special Needs because well, hey, like I said, we are all up against something.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

As a side note:

This is an older piece that I am reposting. I originally wrote it for Elephant Journal. I wanted to share that after one of my students read the original article, she felt so moved that she got me a hearing aid. The other monies that had been donated went to audiologist visits and upkeep. There are no words to express my gratitude. I will continue to pay it forward daily. Thank you. The power of the word is no stranger to me and also, the power of human kindness.

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