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…

Grief, Guest Posts, healing

Hearing the Unheard in Grief

July 1, 2015

by Mark Liebenow

If you lose a chunk, or all, of your hearing, the world radically changes. You don’t relate to people in the same way. You may not be able to hear the chatter of birds, the scuffling of leaves in the breeze, or the purring of your cats. There’s a constant vulnerability, a distancing from people, a hesitancy to interact.

Ditto with grief.

The loss of hearing has similarities with losing someone you love. They’re both forever, and both are significant losses. The far greater loss is death, of course, and I’ll try not to push the comparisons too far.

Hearing loss is invisible. You can’t tell until you get close to me and see the hearing aids. Then you tend to stare at them. And I notice.

Grief is largely invisible, too. Until you get close, I seem fine. Then you notice the residue of tears on my cheek and the redness of my eyes. When I talk about grief, you tend to look away. And I notice.

At night we take out our hearing aids and the world goes silent.

With a spouse who has died, the house is always silent.

In a crowded room, the hard of hearing have trouble understanding because aids amplify every sound. The cacophony becomes too much, and we want to find a quieter place.

The grieving have trouble coping with the bustle and noise of crowds, especially if we are introverts. Crowds deplete us of energy, and we seek a quieter place.

When your beloved whispers sweet nothings into your ear in bed, you hear nothing because you can’t hear whispers.

With grief, there is no one whispering.

Every day we are reminded of our loss of hearing in countless ways.

Every day we miss our loved ones when we think of something we want to share with them, when we have a question only they can answer, when we see one of their prized possessions, when we hear certain songs or drive by our favorite restaurants.

If you’re hard of hearing, you read lips at least a little to help interpret the verbal sounds you partially hear.

In grief, you read eyes to interpret what people are saying, to determine if they are trying to be helpful or are only being polite and would rather be somewhere, anywhere, else.

If you grieve and have a loss of hearing, this compounds matters. Imagine that we’re sitting in a busy coffee shop and you’re trying to console me by talking quietly so that others don’t overhear. Well, I can’t hear, either.

We already feel partial for not being able to hear clearly. Now we also feel broken by death. And if our hearing suddenly dropped for no reason when we were in our teens, like mine did, then we have probably learned to be quiet in groups and stay on the side of conversations, even though we’re dying to share our witty retorts. We don’t hear well enough to be confident that we know what conversations are about, and by the time we’re sure, the conversation has moved on to something else.

If your spouse has died, not only have you lost someone you love, you may have also lost “love,” feeling that no one else will want to put up with your hearing loss.

It’s not always easy to live with a hard of hearing person, because you have to repeat things. It can also be funny. Sometimes I mishear the words, think it’s a creative way of saying something, and use it in my writing.

Whether it’s a hearing loss or grief, if you are in front of me, all I ask is that you not jump to conclusions. Continue Reading…

Converse-Station, Guest Posts, Interview, Jen Pastiloff

Best-Selling Author Caroline Leavitt Interviews Jen Pastiloff.

August 27, 2014

By Caroline Leavitt.

This is an excerpt from interview I did on the incredible Caroline Leavitt’s site. I am still giddy about it. Pinch me! Here’s a teaser…

I first heard of Jennifer Pastiloff because everyone on Facebook was talking about her essay on dealing with her hearing loss. It was so brave, so beautifully written, that I wanted to talk to her. Jennifer also is the creator of Manifestation Yoga and Karaoke Yoga (how fun does that sound?) and she runs writing and yoga retreats. I’m so thrilled to have her here. Thank you, Jennifer!

CL: What sparked you to write such a brave essay now?   Continue Reading…

And So It Is, Eating Disorders/Healing, healing, Hearing Loss

Betrayals. By Jen Pastiloff.

June 9, 2014

By Jen Pastiloff.

Well, there’s the big one.

My father coming home with chocolate covered marshmallows for me on July 14, 1983 before changing into his hideous frayed jean shorts and a yellow Cancun t-shirt with the faded sun across it. Then, on July 15, smoking his last cigarette and quietly exiting out of his contract as a parent without so much as a goodbye. Death doesn’t always allot for goodbyes. I get that. But still, a betrayal, nonetheless. Continue Reading…

Hearing Loss, loss

Bursts Of Silence As Holy Things. An Essay on Losing My Hearing.

February 15, 2014

Hello from London! I have an essay up on the wonderful site The Nervous Breakdown. I would love if it you read it and comment/share. It’s the first time I have really tried to put my hearing loss into words.

excerpt:

After decades of living in profound denial, I finally accepted that I had severe hearing loss. The audiologist put me in a box, stuck a piece of white paper over his mouth, and asked if I could hear what he was saying with the paper covering his lips. I couldn’t. I understood then that I was going deaf.

Again I thought: words overrated, talking unnecessary.

In a box, locked up like Darwin the dog.

When the doctor said severe hearing loss on top of tinnitus, it occurred to me that the eeeeeeeeeee sound I had made as a child was my way of mimicking what I heard in my head. I was trying to get it out. I was trying to drown it out. Anything to make it stop.

The phrase adapt or die makes sense. I’ve adapted to the constant ringing in my head. When it becomes too much to bear, I adapt by drinking wine. Or by sleeping.

Click here to finish reading.

And So It Is, Awe & Wonder

So Much Depends.

August 12, 2013

By Jen Pastiloff

Let’s say it’s like this: He leans over to talk to me. We’re at an airport. Let’s say we are at an overpriced fish place in the Los Angeles International Airport. Flight’s been delayed five hours. Imagine that both of us traveling to the same place: Sioux Falls, South Dakota. He leans over to tell me he’s been married 58 years and that he and his wife normally share dinners and would I like half of his? He lost 4 of his fingers on his right hand 45 years ago on a rotary lawn mower, has an adopted son who is 6 foot 10 and he’s a Christian. He told me to keep talking to God before he passed me half his trout.

He told me he’d “just met so many nice people at the airport.” He’d been there since 6 am. It was now 6 pm. While I was huffing and puffing at all the time wasted he was looking around for the miraculous in the mundane, in the faces of people searching flight status boards or shuffling through security, begrudging the fact that they had to take off their shoes or remove their laptops.

When I told him I was a Jew he grasped his heart as if the fact was astounding enough to actually pain him. One of our neighbors was Jewish and they were just the most wonderful people, he’d said. I laughed (it reminded me of when someone says “I like gay people. I have a friend that’s gay) and told him I wasn’t a practicing Jew. He reminded me that I was one of God’s chosen. I wondered if there were any Jews in South Dakota but didn’t ask him. I knew there was at least one family, his neighbors, The Wonderfuls.

I drank my wine as I watched him carefully cutting his fish and smiling as he scrolled through his cell phone (a Blackberry.)

The man has on this light red raincoat and as my red wine slides down the back of my throat, I think of William Carlos Williams:

so much depends

upon

a red wheel barrow

glazed with rain water

beside the white  chickens.

He leans toward my table. This is a picture of my beautiful wife.

So much depends on how we react to things.

His fingers, for example. How did he react 45 years ago when he was showing his father the newest features on the rotary lawnmower and the blade just sliced his four fingers off like they were irrelevant as dead grass? Nothing more than meat under a glass case at the butcher’s. Hurry, I’m a rush. I’ll take a pound of American and a pound of provolone. Slice it thin, please. He told me that when he’d lost them he quickly had to learn to laugh about it. I guess I’m going to have to learn to pick my nose with my left hand now.

I didn’t react well to the flight delay. I’d felt entitled and ornery. Ornery is a word that makes me think of old people but my hair is greying (not for much longer, I swear) and I had my glasses on and a face free of any makeup, so I felt like an old person. An ornery old person. Sometimes with my hearing loss, I would mistake horny for ornery. I tend to imagine each word containing parts of the other, like distant relatives.

Doesn’t this airline know how busy I am? Huff. Don’t they know I am trying to write a book proposal? Puff. I made a stink and rolled my eyes and couldn’t believe I had to wait. The flight was meant to leave at 2:40 pm (it didn’t leave until 8:30 pm.) I even thought about going home and canceling my workshop in Sioux Falls, South Dakota.

I couldn’t cancel the workshop. People were driving 14 hours from Canada! They were coming from Minnesota! I couldn’t cancel simply because I had to wait a few (okay, 6) hours at the airport. I got my meal voucher from Allegiant Air. (I had also never heard of this airline before this trip. For good reason, apparently.) The meal voucher was for eight dollars which made me chuckle. because really, what can you get for eight dollars besides a half glass of wine or two Snickers bars and a pack of gum? With 8 dollars (okay $7.69) I bought a New Yorker magazine so I could read the latest by Joyce Carol Oates and a story on the Steubenville rape trial and Twitter. (When did the New Yorker get so pricey?) I took my eight dollar voucher and with a huge chip on my shoulder, a chip weighing as least as much as a small man, I headed to a restaurant to sit and sulk.

So much depends.

So much depends on where we are. Where we are born. Where we park our asses down to eat a meal. Where we sit to write. Where we lay our head at night. Where we find ourselves on a map changes the course of everything, and whether it’s literal and full of pushpins and highways and mountains, or an emotional one, you better believe that life is an exercise in mapmaking.

I get led to a table for one. There are two men on each side of me, also eating alone. Let’s say I get led to the bar. It then becomes a whole different story. The map is then green instead of red, perhaps.

So much depends on so much.

I was content on being pissed about my wasted time, all the while wasting more time. I got no writing done, no reading done, nothing productive to speak of. So when this older man leans his body towards mine and says something I can’t really make out but which sounds like something to the effect of I’ve been married for 58 years, you know, I smile.

Here, an opportunity for you to connect. Here, someone to talk to. Here, someone offering you his food. Here, some fish.

A red jacket. A red wheelbarrow.

So much depends on where you look.

I loved him immediately. He became my grandfather, my priest/rabbi, my meal ticket, my companion, my cartographer, my reminder to pay attention. He also wore hearing aids (like me! He also became my twin!) He was my fellow conspirator against the hearing world. I heard this story about a man who, after 40 years, finally got a pair of hearing aids, he told me, and ever since he’d had to change his will twice, he laughed. I’d thought he was going to tell me that the man gave the hearing aids back because not hearing had been better.

So much depends.

The fact is, when you can’t hear well you have to pay attention. Closely. You see that lady three tables over licking her fingers and although you can’t hear the slurp, you imagine the suck and the little quack it makes, and the man across from her? You see him eating his chicken sandwich without chewing even though his back is to you. You can tell by the way his jaws move from behind. You can see all this while your ears prick for any sound at all, and, when no sound arrives, your eyes scan the room and notice every painful exchange, every empty gesture, every goddamned chicken finger being picked up and put back down by every child in the world.

There’s nothing you can’t see when you can’t hear so you have to be really careful where you sit or you will see it all.

So much depends on where you sit.

His name was Dick and the thirteen year old in me wanted to laugh when he told me his name. He said dick! Haha, he said dick! He gave me his card and wrote down my name on the bottom half of his own meal voucher for eight dollars, which he tore off and put in his front pocket, next to a pen. Would we ever see each other again? Let’s say: no. Let’s say we leave it at that.

And that that is enough. One of those rare moments in life when we say I don’t need more than this.

The having had it happen. The exchange of two human beings in an airport enough to sustain you for a while. Let’s say that’s the case here.

He pays his bill and shakes my hand. I have a styrofoam container of fish sitting in front of me like a gift and I will remember him by it. The man who gave me half of his dinner. The man in the red jacket with the missing fingers.

He leaves his jacket behind so I reach over and grab it. I drape it over the back of my chair knowing I’ll see him on the plane and can give it to him then. I’ll carry the fish he gave me in one hand and his red coat in another.

For a few minutes I feel calm, as insular as a cave, as sturdy as the land I would soon be visiting in the southwestern part of the state of South Dakota. I am as protected as the Badlands I would be at in just two days time, that rugged terrain I’d dreamt of seeing again ever since I first saw them at 18 years old on a cross country drive I took in a mini-van. Mako Sika, translated as “land bad” or “eroded land”, my beloved Badlands, which beckoned to me with their otherworldliness and various personalities (how human of them!) I was part of them and no one could come close to me in the safety of my red vinyl jacket. I was on the interior.

My insides warm from wine, the red jacket a heart on the back of my chair, holding the world in place. Knowing it’s there enough to keep me sane.

So much depends on a red jacket.

Ah! You found my jacket, he rushes back up to my table.

So much depends.

Yes. I was keeping it safe.

Let’s say it ended like that.

We finally boarded the plane. A few rows up, he sleeps, while my legs shake uncontrollably (too much wine and coffee and too little sleep) and I rest my head on the shoulder of a stranger.

Do you mind if I lean my head on your shoulder?

The stranger was on his way back to Iowa. Football scholarship. Young. Polite. Kind. No, I don’t mind. Lean on me, he says.

So much depends on where you sit.

So much depends.

Let’s say two days later I am standing on the edge of the world, at Pinnacles Overlook right by Route 240 at The Badlands National Park, and let’s say I wished that right then and there I could ask that man in the red jacket if this is what he meant by talking to God?

**This essay is dedicated to Melissa Shattuck for having the chutzpah to get me to South Dakota. And to Dick, naturally. Red wheelbarrows. All of them.

(a p.s. to the story: after I posted about it on my Facebook, through the serendipitous nature of the universe, a woman commented: “The man in the red jacket is my dad!”)

Find the miraculous, even in the mundane.

Dick. The man in the airport.

Jen will be back in South Dakota May 28th for one workshop. Click here to book.

Beating Fear with a Stick, Hearing Loss, Inspiration

Rare and Fragile Birds.

December 27, 2012

Here in London. Just arrived from the countryside of England. More specifically, a quaint little town that looks like you think England should look like with its cobblestone and sloping streets and shops. Not stores- they call them shops. We were in the countryside visiting my brother-in-law and his wife and son. We were all there: my husband, me, my in-laws. I actually adore them aside from the fact that I am more outspoken than they probably like, except when I’m not, when I am the me that I am most days, which is, to put it plainly: an introvert.

I know, I know. You are smirking. You are shaking your head. I have an easy-as-Sunday-morning time being in front of groups, being the leader, being the center of attention. Being the writer and the observer. But when it comes to really being with people, eh, not so much.

I would rather be alone, in my head, with my books, with my words and thoughts. So many thoughts. Thoughts thoughts thoughts. I battle it. I am a rare bird. I am weird. I love people and I can’t stand them all at once.

I like the idea of them mostly.

The truth is, or at least the truth for me now and perhaps the truth that has always been there, is that I can’t hear. Especially in groups. It is far too much work to understand and to try and keep up so I go far away into the land of my head where I am safe and its quiet and I can be alone and not be badgered with questions I can’t hear anyway. I feel dumb mostly. I feel like a child in a roomful of adults who pretends to understand their language and their nods and their tssk tssk’s but really just understands what it feels like to be loved by them in a way that doesn’t need language just an arm around the shoulder, a hand on the forehead, a smile to acknowledge yes, we know you are here.

I am lazy and not very domestic. No, no please don’t think I am being hard on myself. I am not. (I am in many ways but not in this way. This is fact.) Last night I offered to help clean up after dinner. This is what women do, right? This is how we bond. This is what we do. Right? Right?

I picked up some plates and shoveled old food into the garbage but beyond that no one would let me do anything. Later, my mother-in-law made a big deal of of my offering to help (she was just trying to be nice, I think?) Jen even offered to help. It was good. Right, Jen? You offered to help clean up?

I am sure she was just making conversation and at the same time trying to make me feel good and useful but I couldn’t help but think I am a strange animal in a foreign land and even when I am home I am a bird among the fish. I am a bird with one wing. I am a rare and fragile thing.

Maybe not that fragile but my fierce independence (not as fierce as I like to imagine) makes me cringe every time I am doted on. You ok, Jen? You ok? You ok?

You ok?

It is so much easier for me to be alone. They are all out right now and I am alone. Hooray! I am at my best! I am happy! I can write! I don’t have to try and pretend to hear or be someone I’m not! Yay! Freedom! but if I want to migrate with the rest of the birds I must manage conversations and learn how to do things like cook and clean and pay my bills and do my taxes. Right? Right?

Right?

There is an Iranian custom called Taarof which is basically to say you keep offering someone something no matter what. Tea? Cookies? Tea? Cookies? Have the first bite of my pizza even though I’m starving? Have my jacket even though I’m freezing?

It drives me crazy. Not because of the inherent politeness it implies but rather the opposite. It always strikes me as something that actually doesn’t want to be done. Right before I got married, one of my husbands family members explained to me that you offer it without really wanting to give it or something to that effect. I tuned out because I got so angry. I have had enough of that my entire life. This morning, as we waited for the train to come back to London, I told my father-in-law that it was not singular to the Persian culture. I said it was Yiddish and Jewish too. It was a Jewish mother quality. Offer me food until I turn blue in the face with No, Thank you’s.

They asked me what the Yiddish word for it was. I said there was no specific word but that it was known as: guilt.

And yes I have had enough guilt to kill a horse, as my mom would say. My mom with all her funny phrases (thanks Mom!) I have killed enough horses in my day. No more guilt.

So I am a little more opinionated when I am. And when I’m not, I am quiet and in my head. I am a writer. Whose mostly deaf. What else can I be? I can’t hear most things that are said so I prefer to be in the company of my brain, thank you very much.

I am a snob. No, not with people. I mostly love people. Or like I said, the idea of them. With food. I am a snob with food.

I realize when I am with my family here in England who are all so easy and so busy taarofing and who could care less where or what we eat. Me? With all my past food issues and obsessions with it, I can’t just eat anywhere. (Of course I can!) I make a scene in my head. I sulk in my head (and probably a little out loud) that we have to eat at a place where you have to get mayonnaise and ketchup and salt in little packets. And you have to order at the bar. The bar! My husband asks if I was born with a silver spoon in my mouth sometimes to make fun of me. No, quite the contrary. Sometimes we counted pennies (not an exaggeration) to buy a can of tuna. Not always no, but in the worst case scenarios we did or my mom made something called mush. Mush was a mix of brown rice and lentils and whatever else we could literally mush together. So, why the snobbery now, Jen?

I have control over my food, that’s why! (Want a cliche? There. I gave you one.)

I get pleasure out of deciding where to eat. Out of making a production of where to eat and what to order and what kind of wine to have. When I feel ordinary and trapped I truly feel like a rare bird, starving and in need of nourishment. How can you expect me to eat this wilted lettuce and fried fish?

Yet I do. I eat it and I survive and am probably made better for it. Why should I be dictated by my food choices and my bad hearing? I will eat this fried fish and wilted lettuce and enjoy the company, even though I can’t really hear much of what is being said and I will learn how to slither into the world like a bird does when it must eat. I’ll swoop down and take what’s offered because that’s how life works sometimes. You can’t always sit in a corner and draw pictures with words in your head while the rest of the world carries on, trumpets for mouths.

You can sometimes. Just sometimes.

You can sometimes jettison back and forth between worlds but if you want to be married (as I do, as I am) you must somehow learn to eat greasy fish and chips in a diner that used to be an Opera House (a real life Opera House!) And it’s actually not that hard. You open your mouth. You take a bite. You chew. You swallow. You sip your wine. You listen the best you can with the ears you got and you take another bite. You dip your fry in the mayo from the nasty plastic (stop judging, Jen!) packet. You try your best to understand and when you don’t, you don’t.

It’s not that different from any other married person’s life, hearing loss or not. Man or woman.

So I am a little weird. I am a little snobby with my food and I suck at cleaning. I like to be alone more than not. So what? I am not so special. I am not that rare.

When I start to feel too rare and fragile and special I know that it is time to re-renter the world of People. I will not feel guilt for my wacky ways (they aren’t even that wacky) nor will I make excuses.

But I will compromise.

Birds don’t travel alone. They flock together.

When I start to separate, my wings outstretched, flying high above everyone, looking for things to write about and feeling more than a little sorry for myself, I will look for the nearest ledge, perch on it and wait for an opening. There will be an opening and I will slip in. I will do what I need to do to be a part of the world.

Inspiration, my book

The Yes Within You.

November 12, 2012

We write to remember.

Perhaps that’s why I never kept a journal, why I never wrote things down. I didn’t want to remember. Why now as I sit down to write this book which has been gnawing at every gnawable part of me, I am berating myself for not remembering the details. How could I not have kept journals? How will I remember what I need to say? I can’t even remember to meet someone for lunch.

This is how: I will dig deep in my imagination, into the Cave of Remembering so I can share with you any insight I have as to how I have transformed my life, in both little ways, and very very big ways. In all the ways I can describe from my memory and all the ways I can allow myself to admit to.

This journey hasn’t always been pleasant, as most of us know when it comes to journeys. Sometimes long and arduous and filled with sketchy characters and other times free of turbulence and sprinkled with long wine-filled dinners and belly laughs. We also know this about journeys: some go as planned and some suck because your passport gets lost and you miss the train or the plane and your boyfriend dumps you before the trip even starts.

As I begin to write this book I think about what inspires me. What it really feels like to be inspired. The sensations in my body, the way my skin feels hot and my heart becomes a train in my chest. The way I sweat just on my upper lip and I feel as if I drank two espressos.

I am inspired by the human spirit. By people who have overcome adversity of some sort. By the triumph of will. By grace and by possibility. By struggle. By art. By connection. By loss. By love. By touch. By sadness. By death. By laughter.

Perhaps we are all inspired by these things. Why when we see someone with no legs win a race or someone with a fatal disease face the day with an attitude we could only dream of possessing, it makes us want to jump up and down and reclaim our humanness. Yes, yes I am part of that race! I belong to humankind that produces stories such as these!

On some level, we all are up against something. Some people have a leg that has been amputated, some have a baby who is dying, some have a rare genetic syndrome or are deaf, some just feel very lost in a sea of people who know what they want or pretend to know what they want. Some can’t make up their mind even when it comes to whether they want salmon or pizza.

I recognize that quality, that Yes in a person when life should be screaming No. We want to be part of that Yes. We want to be reminded that the Yes is within us.

By Jenni Young of course.

I had no idea a few years ago that I would ever be seen as “inspiring” as some of you have lovingly said. (It’s still very surreal.) I had no idea that I wouldn’t be taking orders for eggs for the rest of my life. I am not sure what else to call myself, and frankly, it doesn’t matter what I call myself. I gave that notion up recently.

The constant naming of things. The calling of this or that and how much weight we give each particular name. The notion that it actually matters what we do for work, that it defines us in some way. The notion that who I was when I was a waitress is any different than who I am now. I had no idea back then when I was serving veggie burgers that a few years later I would be sharing my story with the world and traveling with it. That I would be helping young girls overcome eating disorders or connecting with other people who were hard of hearing.

What I am saying is: I had no idea I would become a vehicle for hope.

We all have that potential within us. To be vehicles. What kind of vehicle do you want to be, is the question.

How many times do I take for granted the effect I am having in the world? How many times do you? How many times a day do I feel redundant or small?

It’s not always easy to acknowledge ourselves, that sometimes it feels like we are jumping out of a plane. Hell, it feels like we are being pushed out of the plane.

How often do you stop and say Holy Shit, my words are having an impact on someone? Who I am being in the world is directly affecting someone else’s life as well as my own?

Now, you may not curse as much as I do. I hope you don’t because I am like a dirty sailor, but, curse words or not, get clear on the fact that who you are being today, right now, in this very moment is not irrelevant.

You never know who you are affecting.

You never know how you are affecting them.

So just know.

Just know it somewhere deep in the knowing part of you. Keep being exactly who you are and keep being better at it every day.

That’s all you can do.

Despite losing my father, my life line, at a very young age, despite battling depression and an eating disorder and hearing loss, I learned to hear my heart for the first time. I learned to listen to the calling that was my life. I learned to be better than I used to be.

I don’t claim to know a lot.

I know what happened to me and the choices I made which got me to where I am now. I know what hurt and what made me soar with delight.

I know now who I am and my only hope in telling my tale is that you too will begin to listen to your own heart. To the beating which is whispering Yes Yes Yes.

photo ny Jenni Young of course

Hearing Loss, loss, my book

Investigating Loneliness.

September 16, 2012

I was in a yoga class a couple weeks ago, and my teacher, Annie Carpenter, kept using the word investigate to cue us in the poses.

Investigate the backbend.

I liked the idea of being a detective when it came to my backbend, to the way my foot felt on the mat. I liked the way this verb felt in me, the way it rolled around and ended up in so many different landscapes. I planted the seed of investigation and what came up out of the earth of me was:

Investigating loneliness.

The old couple that lived next door to us for years in New Jersey, Kay and Jerry and how she got hit by a car in front of the church across the street and never came back from the hospital, staying there for months before she finally died of some complication. How he died of loneliness. How I think it must not be that hard. I’m investigating that.

Sometimes I sit in my apartment and get stuck there. Literally stuck. The quicksand of my desk chair. The sinking mud of my bathroom mirror.

The phone rings and the texts come in, the emails. All of it with its own little rythym of relevance: Pick me up! Answer me! Call me back! Go here! You should do that! I stare at it them like little soldiers, these little missives and misfits and messages and patiently wait for it all to stop. Mesmerized by my ability to want to turn it all off, to make my nearly deaf ears a little more hushed. Noiseless as shock, I sit at my desk or in my bed and wrap myself in a feeling close to nothing.

What is this feeling? I have so many things to be done, so many people to call back, so many things I have let slip between the cracks of my mind and yet I can’t move.

Everyone is laughing and I might join is so as not to look stupid but I have no idea what they are laughing about, their muted laughs frogs in throats. I might as well be floating on a piece of bark at sea with nothing but the clothes on my back and my thoughts to keep me from drowning. I have no idea what you are laughing at! I scream in my head as I laugh along, my hearing loss incapable of disguise. That feeling of laughing when you have no idea why everyone is laughing, that’s a kind of loneliness I want to tell you about also.

How can you feel lonely when you have so many friends, when you are always around people? I imagine on my computer screen after this blog post, being sent in an email from someone feeling sympathetic somewhere. On the bottom, in the comment section below, platitudes like: You are never truly alone! You may feel lonely but you are never alone! You are so loved.

I was in Santa Fe a couple weeks ago eating at Pasquals with my friends, the writers Emily Rapp and Chris Abani. We were chatting about the difference between sympathy and empathy. Emily’s baby is dying so these types of conversations are normal over Huevos motuleños. (This dish includes banana on top of eggs and while at first I thought the idea horrifying, I came around once I tasted Emily’s.)

Chris and Emily were saying that with sympathy people make it about themselves. Whereas empathy is truly about you, whoever you are. Makes sense. I agreed. That’s why sympathy doesn’t feel authentic, why it’s rejected like a banana on an egg. I don’t want sympathy.

I want a: Yea! Hey, I know what you mean. I have felt that as well. I get it. I understand.

That’s it. Enough said.

You can’t fix it. There is no fixing. I am investigating all the ways I feel lonely in a crowd, what it feels like to be amongst the world and also completely not in it at all.

The thing is, I like being alone. I prefer it. I struggle to leave my apartment. I would rather read a book or write than go out and I have been this way since childhood. But much as I am investigating my backbend, I am looking into the intricacies of my aloneness and how it keeps me in my head and what a bloody bad neighborhood that really is.

I just read something by Iyanla Vanzant where she said “Who are you? Is not meant to be a question. It is meant to give pause for reflection. Who are you without whatever you hold on to?”

It is not meant to be a question but rather to give pause.

That’s what I am doing with this particular case, in my detective work, in my investigations. I am giving pause. I am not looking to solve the mystery, per se, but to look without judgement at the areas of my life I have hidden or buried.

I feel lonely often because I can’t hear. It’s a lonely world when you can hear sounds but have no idea what they mean.

So I understand how Jerry died shortly after Kay was hit by the car in front of the church because surely she was the only one who understood his sounds and what they meant.

What I have found in my investigation thus far is this: loneliness is the place we meet our hearts. And we hear our hearts for the first time. The beat slows down, the accelerated beat ceases and there is no panic or sadness or isolation only connection and a deep knowing that you have waited your whole life for this.

In that moment, The Lonely Ones send their hearts out into the world to love and be loved, and maybe they will get broken, maybe not. But for a few minutes in the life of that heart there is nothing else but other hearts and their is a linking up which if you listen closely to it says the word Finally.

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.

Daily Manifestation Challenge, Hearing Loss, Self Image

Who Are You? The DMC: Daily Manifestation Challenge.

May 30, 2012

Yesterday, a girl came up to me before my class at Equinox and told me that my sister Rachel’s blog is her saving grace; that she feels she is on the same journey as my sister. That she is, in fact, a little obsessed with 3 Words for 365. So am I, I thought.

So am I.

I felt proud, happier than if it was my own blog she was talking about (which, due to my hearing loss, I thought she was at first!)

Serendipitous too, as I had just started this guest post for my sister’s blog. It was a gentle nudge from the Universe to get writing.

The past few days I have been in my bed, with the blanket over my ice-pack covered head.

Sound fun?

No, I didn’t think so.

Unless you are a vampire.

I haven’t suffered from one of my migraines since last May. Then BAM! Without warning I got one on Tuesday night.

I felt the panic set in.

It makes it hard to talk. To see. To focus.

I slur a bit.

Like I said: not fun. Unless you’re drunk, then these symptoms might feel a bit more celebratory.

I cancelled my private yoga sessions on Wednesday and Thursday due to how bad I was feeling.

I called Frank Gjata, who has become my life coach and dear friend, and before I knew it, I was lying in the dark, my throbbing head screaming Get off the Effing Phone, while the rest of me was off having a profound life changing moment. (That’s Frank for you, folks.)

What he does.

LCM. Life. Changing. Moments.

He asked me: Why now? Why do you think your migraine is coming back now?

I wanted to yell I don’t know and I don’t care. I just want the pain to go away.

He asked me to describe what I was feeling.

I said: throbbing. All I could get out. One word. Throbbing.

He suggested how perfect that was because it was actually how I was living my life.

On, off.

Stop, go.

Why did he have to be so spot on?

I told him I was feeling guilty that I gave up so much work the last few days. I said ” Who am I to give up $200 an hour jobs? I didn’t even make 200 A DAY when I was waitressing?”

He says: Exactly. Who are you?

There it is. That question.

“Who are you?”

(Just for the record, I hate when things get turned on me.)

I got it. Here we are back to my favorite exercise in my workshop. The “I am ____” exercise.

I realized that I keep myself so busy and run down because there is this mantra running through my head. You know how I love a mantra.

The mantra is: Who am I to ever say no to something?

Who am I to ever allow myself to say No to something?

What a question!

How many times a day do we say yes to things because we don’t feel we deserve to say no? Or, because there might not be another time to say “yes”? Or because the only way we know how to live is to keep ourselves busy all the time? Or because we feel guilty?

The list is endless.

I decided to fill in my “I am ___.”

I am: a successful writer. I am: a loved yoga teacher. I am: financially abundant.

I am: powerful. I am: A connector. I am: healthy. I am: well.

Who are you?

Last week Frank helped me realize how I was speeding through life ( again with the on, off, stop, go) and that helped me stay not present.

In fact, I got a speeding ticket on my way to his house. Just for fun. So I had proof I was speeding.

It wasn’t that fun, to be honest. I cried.

He also helped me get clear on how my hearing loss, “my not being able to hear” was related to my “not being able to be here.”

I hope this doesn’t sound too airy fairy, too woo-woo.

But the reality is, I don’t care if it does.

I am: someone who is independent of the good opinion of other people.

Is my migraine gone? Mostly. I wouldn’t be able to write if it was fully with me. There is enough of a remnant though for me to remember who I am.

Enough of a subtle pulsing and slight nausea to have me stop and take a breath. To have me pause and ask myself “Do I want to say yes to this next thing?”

Because the truth is: I get to choose.

Somewhere along the line I forgot that I get to choose who I am.

I forgot who I was and thought I was someone who would always be broke and who always had to say yes to any and every job or offer that came my way.

I forgot that I am worth it, and I get to take care of myself, especially when I am not feeling well. Especially when I am laying in a dark cell with ice over my face. Especially then.

Keep going, don’t stop, keep pushing, it’s never enough.

These mantras are broken and no longer serve me so I am throwing them away with my migraine if you don’t mind.

I would love to hear what your mantra is.

Just who do you think you are?

Sorry it’s been so long since a DMC was out, folks! In the comment section below, answer the question: Who Are You?

***This originally appeared in my favorite blog 3wordsfor365.

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.

Inspiration, manifesting, Owning It!

Speeding.

March 15, 2012

Yesterday as I was on my way to have a coaching session with the incomparable Frank Gjata I got pulled over.

“FOLLOWING OUR BLISS IS THE DESTINATION.”

– Frank Gjata

The cop didn’t like that when I told him that was my destination and thus explained why I had been speeding.

Where you going? Bliss! I’m in a hurry to get there, Officer. Please!

Ok, I didn’t really say that. I did beg and cry. A lot. It didn’t work. I got the speeding ticket.

Frank offers what he calls “Life Changing Moments” Sessions.

Imagine the irony that I am on my way to my very own life changing moment sesh and I get pulled over by a cop on a bike. It felt ironic to me.

Why?

Because I got the metaphor before Frank and I even began to dive into it.

Frank is the creator of Conscious Ink and Manifestation Tattoos and I am surprised he hasn’t come up with one yet that says “You are going past the speed limit.”

(Frank read: please create that tattoo, my friend?)

I am always speeding. It’s true.

Just look at my Facebook. Or Twitter. I am always getting asked “How do you do all you do? How do you keep up?”

A secret? I don’t!

I miss appointments and I forget. I double book. I get speeding tickets. Doh!

Yesterday’s ticket came at a perfect time. A life changing moment ( thanks Frank). Last week, one of my dearest friends, Steve Bridges passed away, as you may have read in earlier posts, and it was like a bucket of ice cold water poured over the body of my life.

I got very cold and very awake and very alive.

I also realized I no longer wanted to speed through.

Well, apparently I didn’t realize it fully because yesterday’s ticket was a gentle reminder that I had not committed to slowing the f*ck down.

I have committed to slowing down but I have not yet committed to giving up cursing. (Sorry folks with sensitive ears.)

I made some huge shifts yesterday which I am still processing but I will say this: I needed to get that ticket. I need to frame it and use it as a reminder that I can take my time. That I can breathe. That I can be present.

There it is.

Be present.

Frank asked me a question no one has ever asked me before.

In case you didn’t know I have profound hearing loss.

He asked me what part of my “not being able to hear” keeps me “from not being here”?

I wanted to leave when he asked me this. I had a realization that for as much as I talk about vulnerability, I didn’t like to be vulnerable. Damn you, Frank!

Yet I stayed. I won’t share all that we talked about but I will share that I think you need to get your arse over to see him. (Please do not speed.)

I will share that yes, yes it was a life changing moment and like his tattoo says that I wear on my forearm: There are no accidents.

Speeding ticket an accident? Nah.

A gentle reminder that I deserve to be fully here and that I am doing a disservice to others otherwise? Pretty much.

Is the ticket annoying and a waste of money? Maybe.

But maybe not.

Maybe, if I really follow-through on my break-through I will realize that although it cost me $400 or whatever a speeding ticket goes for these days, it will have gained me my life.

I may not be able to hear perfectly but I can be here perfectly.

Thank you Frank.

***So here is my question for YOU: Where, in your own life, can you stop speeding?***

I am excited to announce that I am an ambassador to the Ink.

I love being an ambassador for the amazing Manifestation tattoos! I am pleased to announce also that Frank will be a part of my Manifestation retreat May 4-6 and each retreat attendee will get a tattoo at the start of the weekend. It is sure to be amazing! Sign up here. www.jenniferpastiloff.com ( at the time of this writing there are 6 spots left)

Jennifer Pastiloff will be teaching at the Tadasana International Yoga & Music Festival over Earth Day weekend on the beach in Santa Monica, CA, April 20– 22. Click here to check out the festival website and purchase tickets. Enter the code Pastiloff for a $50 discount! (Please note that discount codes expire April 1.)

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***This originally appeared in my favorite blog 3wordsfor365.

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“FOLLOWING OUR BLISS IS THE DESTINATION.”

– Frank Gjata

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