Browsing Tag

Prader Willi Syndrome

Beating Fear with a Stick, Guest Posts

Snakes & The Things That Shut Us Down.

December 30, 2014
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beauty-hunting-jen-logo-black1-300x88By Jen Pastiloff.

I went with my sister to take my nephew to school yesterday in Georgia. Ola Elementary School. We drove right up and parked in front like we were loading or unloading, which, I guess we were. Blaise gets excited by school. School! School! Schoolbus!

He’s in kindergarten, which he will repeat again next year. He has a rare genetic disorder called Prader Willi Syndrome and autism.

He loves school and cries the snot-running-down-the-face-kind-of-cry if he has to miss it for any reason.

Me? I hated school. I was reminded of that hatred yesterday morning as I walked the narrow little hallway to take him to the therapy room where he plays with the other kids who have special needs.

I smelled that same school smell and immediately felt nauseas there in McDonough, Georgia, a suburb just south of Atlanta which proudly hosts a church on just about every corner and sometimes even in the shopping center.

I haven’t been inside an elementary school in at least 25 years and yet that smell hit my nose like a familiar thing: a cup of coffee, the way the back of my hand smells, gasoline, my husband’s pillow. It was as if all at once I knew it like any of the other mundane things in life. The things of the everyday. As if my nose never forgot This is what school smells like! And the minute it registered the scent, like a dog, I was there, right up in it, tail wagging, crying that I didn’t want to go back. Don’t make me go!

I always preferred to stay at home with my parents then to go to school just as I preferred to hang out with adults when I was a kid. School was insular. It made me feel claustrophobic and lonely at the same time. As the school year would progress, I would make my way in the world, as people do, but still, I hated it.

Come September every year I would have the same anxiety. Don’t send me back.

In fact, I almost didn’t graduate high school because I was absent so many days. I suppose literally and figuratively although I am sure they meant literally. I hardly went.

Isn’t it just a miraculous thing how a smell can do that for us? Bring us right back to the third grade, sitting at our desk, pulling our thumb out of our mouth because someone finally said You shouldn’t suck your thumb at your age. Especially not in public. It’s the first time someone has pointed this out to you and you want to crawl under the desk, inside the desk. You want to disappear into your own mouth.

The things that shut us down.

Someone telling us we’re not good enough, or fat, or shouldn’t suck our thumb in front of other people. The things that stop us and make us go Maybe you are right. 

I worry about my nephew being shut down. I worry that as he gets older people will make fun of him and that it will slowly disarm him.

Little by little, we are eaten away by people. By life. By opinions. By defeat. Until we are hardly recognizable as that thumb sucking 8 year old.

I worry about that even though I know I shouldn’t.

Blaise and my sister were just on The Doctors on CBS to talk about Prader Willi Syndrome. People with PWS (as it is commonly called) never feel full. They literally feel like they are starving and can actually eat themselves to death. There are a whole host of other issues that come along with it as well but the food thing feels like the most torturous. The behavior issues, a close second. It’s a spectrum disorder too, as I suppose all of life is. So all bets are off.

The producers of the show sent my sister equipment so that she could videotape him every time he had one of his meltdowns. They would take the footage she sent and edit it for the show.

We cried when we saw the finished piece as part of the show. It was horrible to watch him begging for food and all the photos of him as a baby when he’d gained all the weight as they put it together slickly with foreboding music. I am glad they did it that way as it was probably more effective. We are visceral beings. We respond to scary music. We respond to kids suffering. We respond to things that make us feel vulnerable and helpless. We respond to big things.

Subtlety doesn’t go over well with the masses.

Apparently when Blaise saw the footage at school (they watched it in his kindergarten class) he said I a fat baby. 

He came from school and asked me to watch it on my computer, over and over. I watched him watch himself on tv and it seemed like he was having a surreal experience, which most of life is anyway. Is that really me? Is this really happening?

It’s like he is starting to become aware that there is a difference between him and other kids. He’s looking at himself with discernment and seeing a difference in himself, which he doesn’t fully understand. Just like with the rest of us. Perhaps he never will.

I see a difference in myself and yet I don’t understand it.

We’re not all that different. His 15th chromosome might be partially deleted but we’re not all that different. He knows on a guttural level that watching the show makes him sad even though he keeps asking to watch it over and over. Then suddenly: Off! Turn it off. Away!

Just like us. Eventually we all get sick of ourselves at one point or another.

He loves school because, so far, everyone there loves him. None of the kids bully him and no one rejects his hugs. No yet anyway. He gets to hang out in the therapy room and jump on a bouncy castle and make crafts and learn letters.  B. B is for Blaise.

I was not happy as a child and my first memories of kindergarten didn’t involve jumping on bouncy castles. I went to a Jewish day school where it was Hebrew all morning and English all afternoon. It was some serious business. Even in kindergarten. I couldn’t handle the anxiety school instilled in me.

I wanted the safety of my house and my cream cheese and olive sandwiches.

Things got worse after my dad died. The school was terribly small, only a handful of kids in each class, and I felt exposed and ashamed. Everyone knew I was fatherless. And that I sucked my thumb.

I was glad when we moved away to California for 4th grade.

I didn’t hate school as much once I left the yeshiva school in Jersey but I was never one of those kids that couldn’t wait for summer to end. I used to get depressed on Sundays because the next day was Monday. I couldn’t even enjoy Saturday nights because I knew the next day was Sunday, which meant Monday was right there, jaws open, waiting to eat you alive.

School shut me down. I didn’t feel smart. Maybe I couldn’t hear back then either? I can’t remember. I just remember hating it.

The things that shut us down.

As I was walking through Ola Elementary School yesterday morning I thought how happy I felt that I would never have to be back in school. I would never again have to deal with that shutting down, with that pressure. (Enter foreboding music and slickly edited images.)

Maybe nothing will ever shut Blaise down? Maybe he will keep wanting to hug everyone even though everyone might prove to be an asshole sometimes.

I was on the plane when I started this piece, as I often am when I write, and, I got stuck, as I often do when I write. I closed the computer and my own eyes watching the back of my eyelids butterfly their way into quiet.

We landed and I turned on my phone.

An email came through from a man named “Kevin” accusing me of not crediting people and not having integrity and how he should call me out in front of all my Facebook followers and how he wasn’t a fan of ego and Good Luck to me. 

Good luck. It seems like the two worst words in the English language when someone says it and really means “Fuck You.”

Who was this man? Who didn’t I credit? What’s he talking about? Is it even a real name or email?

It wasn’t until last night, in the middle of the night, as I lay awake in a river of I Can’t Sleep did I realize how profound it was that the email came in when it did. Sure, I was upset. Look, I literally want to crawl out of my skin and wail when I feel like people take my own work. I want to email them and sue them and say It’s not fair! But I don’t. I breathe and write. Then I write more.

The email came in and shut me down. The things that shut us down.

I went to teach my yoga class and felt ungrounded and sloppy. I was an alien and everyone stared at me with my two heads. I was tired and mean and shut down.

How quickly I was back in the third grade, thumb in mouth, then under my me in shame. How I would have cut my thumb off if I could’ve. How quickly that email brought me back to school. To being shut down.

The things that shut us down.

So Kevin: Good Luck to You. And yes, I mean “Fuck You.”

Look, don’t worry, I’m over it. I almost shut down. My impulse was to hide. To stop writing for a while. To stop sharing. To cut my thumb off.

You know why I won’t shut down? I have the choice. We always do. Who or what are we going to give the power to? This “dude”, if it even was a dude, didn’t even say what he was referring to. And yet I was going to accept it as a truth? As some validation that I am a bad person? No. My choice is No. My choice is I will not shut down. 

It’s okay to get angry once in a while. Does that make me a bad yogi? Then so be it. Get angry and then let it go. As I did. But, refuse to shut down. Get angry and get it out of your body like a snakebite. Suck that venom out and know that it was you who handled the poison like a champ.

If anyone tries to shut you down you must deal with it as you would a snake bite. Sometimes it’s: It’s not poisonous, keep walking. Sometimes it’s: I don’t know what to do. And sometimes it’s: I am getting this out of my body as fast as possible and running far far away because I know it will try and kill me if I let it.

You get a choice. The snake can’t help its nature.

The snakes will always be there but if we step over them and around them and keep going, we hardly notice because they mostly leave us alone.

I think there might be caves though, where all the shut down people live. They live alone in dark holes of the earth and wait for everyone to say It’s Okay before they come out. They never speak and they hardly look up. They are scared and frail but every once in a while when they do look up, they see a light in the sky and remember what they once were.

VANCOUVER! The Manifestation Workshop in Vancouver. Jan 17th. Book here. No yoga experience required. Only requirement is to  be a human being.

VANCOUVER! The Manifestation Workshop in Vancouver. Jan 17th. Book here. No yoga experience required. Only requirement is to be a human being.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being.

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it's magical.

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it’s magical.

courage, Grief, Guest Posts, healing, I Have Done Love

When You Believe You Are Unlovable.

February 9, 2014

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By Rachel Pastiloff.

If I close my eyes and think hard enough I can almost remember the house. Almost. I can’t remember if it was brown or green. Maybe it was brown with yellow trim. I do remember the chain link fence in the back yard, and the rabbit hutch my Poppy made for us. I wish I could remember more. I just said to a friend this past weekend, “I wish I had a photographic memory,” but then realized that would probably be a curse.

I still dream of those days. The ones that happened before July of 1983. Maybe I could go under hypnosis and while in a trance bring a Polaroid camera with me. I had a Polaroid camera once. It was pink and I loved the instant gratification. I would take my Polaroid and snap a photo of all the moments from January 15th, 1978 until July 15th, 1983.

I have a snapshot of the day my daddy died. I have that moment etched in my brain. Chinese checkers, shag carpet, curse words and fist slamming, sirens, strange men, family arriving. I remember all of that. The den where I was held captive as they took Mel, my dad, away on a stretcher. I snuck away and caught a glimpse of his lifeless body. I had no idea it would be the last time I saw his beautiful face, although it did not look beautiful on that stretcher, blue and dying.

In the weeks before he passed my mom and dad had “the talk” with my sister and me. It was the “we are getting a divorce talk.” I remember the bedroom and the bed we sat on with its putrid ugly yellow sheets. My father had an armoire that held all of his “cool” stuff. Probably the same place he placed his drugs, the ones that would weeks later rip him out of my life. That talk would leave an imprint on my life.

I carried it around with me like a 200-pound appendage.

My last memories of my father were of him saying, “You can have Rachel and I will take Jennifer.”

A few weeks later he died. I carried the burden of his poison laced words with me, the words that a five year old hears, in five-year-old comprehension.

  • You don’t love me?
  • Why don’t you want me?
  • Why won’t you take me?
  • I am unlovable. 

For years I’d ask my mother why?

Why didn’t he think I was worth taking, loving, or keeping? She always made excuses for him. None of them ever took it away.

His words became my inner voice.

***

I am a mother now. I have the choice now. As I read the post on Facebook it knocked me over.

“How you speak to your children becomes their inner voice.”

I couldn’t breathe when I read it.

I have to make sure that their inner voice is one that says: I am loveable. I am wanted. I am smart and kind. I am heard. I am special.

This is a challenge as the mother of one child with a rare genetic disorder and autism, and another child with ADHD and a mood disorder. It’s a major battle sometimes to remember to breathe, and sometimes, just to conquer minute by minute of the day.

I have not been the most gracious mom over the last six months. I am depleted in every possible definition of the word. I have had more than my fair share of ugly mom moments, last night being one of them. I was yelling and pounding my fists, scaring even myself. Watching myself as if I were in a movie, looking at my little one stare at me as if I was a monster.

Those moments pass and we are fine, but what is the ripple that I have created inside his voice pool? Rachel, your words become their inner voice.

Your words are what they hear when they lay their heads on the pillow and fall into their dream state. I finally had that epiphinany.

“Epiphany,” the book written by Elise Ballard. I bought it and kept wondering when my epiphany would come. I want it to be profound and earth shattering. I want the world to feel a mini earthquake when my brain finally gets it.

That isn’t even close to what happened. Instead, I lay in my bed last night and told myself to just breathe in and just breathe out, over and over again. I remembered that Facebook post I read.

I want my voice to lift my children up. I want my voice to inspire my children everyday so much that they think to themselves, “I am so lucky, I have such a good life.” I want my voice to be the thing that lights a fire in my children, and keeps them going even when it hurts. I want my voice to be the one they hear in their dreams that tells them, you are so loved, you are so wanted, you are a special gift, and you are love.

My sister Jennifer often says: At the end of your life when you ask one final “what have I done?” Let your answer be “I have done love.”

At the end of my life when my children say their good bye to me they will say, She did love. She gave me my voice.

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Rachel is a native of Philadelphia/South Jersey. She currently resides in Atlanta with her husband and two young sons, ages 7 and 4. In 2009 Rachel’s oldest son was diagnosed with a rare genetic disorder called Prader-Willi Syndrome, with a diagnosis of autism to follow shortly after. The diagnosis was traumatic and forever altered the course of her life. Rachel has made it her mission to educate the world about children who have special needs and their parents. In her spare time between doctor’s appointments, therapy sessions, and the normal stuff everyday parents do, she writes a blog RachelPastiloff.com. Rachel is also a yoga teacher and a health coach in Atlanta. She received her training from the Institute for Integrative Nutrition. Her passion for food, nutrition and wellness are her biggest passion. You can find her on Facebook, at her studio www.hazardcountyyoga.com or assisting her sister Jen at one of her retreats around the world.

tattoos by Conscious Ink. Click to order.

tattoos by Conscious Ink. Click photo to order.

Contact Rachel for health coaching, weight loss, strategies, recipes, detoxes, cleanses or help getting off sugar. Click here.

Contact Rachel for health coaching, weight loss, strategies, recipes, detoxes, cleanses or help getting off sugar. Click here.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being.

Jen Pastiloff is back in London for ONE workshop only Feb 14th. Book by clicking poster. This is her most popular workshop and space is limited to 50 people.

Jen Pastiloff is back in London for ONE workshop only Feb 14th. Book by clicking poster. This is her most popular workshop and space is limited to 50 people.

Guest Posts, parenting

The One Everyone Should Read: On Navigating Parenthood.

December 10, 2013
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beauty-hunting-jen-logo-blackBy Rachel Pastiloff

I am constantly navigating through a crazy maze of trials in my life. Always trying to figure out if what is now is what it’s supposed to be. I constantly examine this concept with my children and myself.

Last Tuesday was an especially difficult day. I struggled through the day, and my kids weren’t even home from school yet. Once my littles arrived home, things went from hard to climbing Mt. Everest hard. Blaise, my sweet boy who has Prader Willi Syndrome and Autism, was in a state of destruction. As dinner approached, I asked my sweet angel where his glasses where. Very nonchalantly, he responded that they were broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses broken, twisted and shattered in little pieces. I found myself cracking into those same little pieces.

I lost my patience and started yelling. I hate that part of me that comes out when I crack.

I screamed at him, “Why, Why, Why?”

He never answered. He didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue; they are at the surface; they are like the skin; they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be “normal?” Why doesn’t my son’s brain work?

There it is: the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive. That it’s tough but working.

In reality, it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself. I cried for the stress that his syndrome can create in me, but mostly, I cried for him. I cried for what I thought was missing. I was quiet after I let it all out; I was quiet all through the days that followed. Something had opened up, and I finally had to face it and deal.

I had to accept what is.

Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failure or lack of in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my a-ha moment that I can accept what is now and trust that things may look different in the future.

I have to let go of what I think it is “supposed” to look like in my life and in my kids’ lives.

As the parent of a special needs child, I tend to be on a roller coaster of emotions. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgment to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

 

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Rachel Pastiloff is a native of Philadelphia/South Jersey. After years of living on the West Coast, she transplanted to Atlanta, Georgia from Berkeley, Ca in 2006. Rachel is a mother with 2 young boys, ages 5 and 7 years old.. In 2009 Rachel’s oldest was diagnosed with a rare genetic disorder called Prader Willi Syndrome. The following year her son was diagnosed again with Autism. Both of these events would help shift the direction of Rachel’s life. She began her path with health and wellness to create a better life for her family. It then became her passion. Rachel became a certified yoga teacher in 2012 and is a graduate of The Institute for Integrative Nutrition as a Health and Wellness Coach. A life long lover of food and cooking, Rachel helps her clients get back in the kitchen and enjoy it. She is helping people have a new relationship with not only food, but also their personal health and wellness. Her work can be seen here on the site and on Positively Positive. Reach her at rachyrachp@gmail.com to work with her or visit her site. 

Beating Fear with a Stick, Inspiration, Video

Where Are You Getting Shut Down?

April 30, 2013
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By Jen Pastiloff

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The essay is below the video blog….

 

 

I hated school.

My nephew Blaise loves it. Blaise has a rare genetic disorder called Prader-Willi Syndrome. He loves school and cries the snot-running-down-the-face-kind-of-cry if he has to miss it.

I went with my sister to pick him up last time I was visiting Atlanta to teach a workshop. I haven’t been inside an elementary school in at least twenty years, and yet that smell hit my nose like a familiar thing: a cup of coffee, the way the back of my hand smells, gasoline, my husband’s pillow. All at once I knew it like any of the other mundane things in life. As if my nose never forgot. This is what school smells like! And the minute it registered the scent, like a dog, I was there, right up in it, tail wagging, crying that I didn’t want to go back.

Don’t make me go!

I preferred to stay at home with my parents, just as I preferred to hang out with adults when I was a kid. School was insular. It made me feel claustrophobic and lonely. As the year progressed, I’d make my way in the world, but still, I hated it.

Come September every year I would have the same anxiety. Don’t send me back.

Isn’t it just a miraculous thing how a smell can do that for us? Bring us right back to the third grade, sitting at our desk, pulling our thumb out of our mouth because someone finally said, “You shouldn’t suck your thumb at your age. Especially not in public.” It’s the first time someone has pointed this out to you, and you want to crawl under the desk, inside the desk. You want to disappear into your own mouth.

The things that shut us down.

Someone telling us we’re not good enough, or fat, or shouldn’t suck our thumb in front of other people. The things that stop us and make us go, Maybe you are right.

I worry about my nephew being shut down. I worry that as he gets older, people will make fun of him and that it will slowly disarm him.

Little by little, we’re eaten away by people. By life. By opinions. By defeat.

Until they’re just as unrecognizable as that thumb-sucking eight year old.

Blaise and my sister were on The Doctors on CBS to talk about Prader-Willi Syndrome. People with PWS never feel full. They literally feel like they are starving, and as a result can potentially eat themselves to death. There are a whole host of other issues that come along with it, but the food thing strikes me as the most torturous. The behavior issues are a close second. It’s a spectrum disorder, too, as I suppose all of life is. So all bets are off.

The producers of the show asked Rachel to video Blaise every time he had one of his meltdowns. They would take the footage she sent and edit it for the show.

We cried when we saw the finished piece as part of the show. It was horrible to watch him begging for food. We tried not to avert our eyes at all the photos of him as a baby when he’d gained so much weight, set against a slick background of foreboding music.

I’m glad they did it that way, since it was probably more effective. We’re visceral beings. We respond to scary music. We respond to kids suffering. We respond to things that make us feel vulnerable and helpless. We respond to big things.

Subtlety doesn’t go over well with the masses.

Apparently when Blaise saw the footage at school (they watched it in his kindergarten class) he said, “I a fat baby.”

He came from school and asked me to watch it on my computer, over and over. I watched him watch himself on TV and it seemed like he was having a surreal experience, which most of life is anyway. Is that really me? Is this really happening?

It’s like he’s starting to become aware that there’s a difference between him and other kids. He’s looking at himself with discernment and seeing a difference in himself, which he doesn’t fully understand. Just like with the rest of us. Perhaps he never will.

I see a difference in myself, and yet I don’t understand it.

We’re not all that different. His fifteenth chromosome might be partially deleted, but we’re not all that different. He knows on a primal level that watching the show makes him sad even though he keeps asking to watch it over and over. Then suddenly: Off! Turn it off. Away!

Just like us. At one point or another, we all get sick of ourselves.

He loves school because, so far, everyone there loves him. None of the kids bully him and no one rejects his hugs. No yet, anyway. He gets to hang out in the therapy room and jump on a bouncy castle and make crafts and learn letters.

I wasn’t happy as a child, and my first memories of kindergarten didn’t involve jumping on bouncy castles. I went to a Jewish day school where it was Hebrew all morning and English all afternoon. It was some serious business. Even in kindergarten. I couldn’t handle the anxiety school instilled in me.

As I was walking through Ola Elementary School yesterday morning, I thought how happy I felt that I would never have to be back in school. I would never again have to deal with that shutting down, with that pressure.

Maybe nothing will ever shut Blaise down?

I was on the plane when I started this essay, as I often am when I write, and I got stuck, as I often do when I write. I closed the computer and my eyes, and watched the back of my eyelids butterfly their way into quiet.

An email came through from a man named “Kevin” accusing me of not crediting people and not having integrity and how he should call me out in front of all my Facebook followers and how he wasn’t a fan of ego and Good Luck to me.

Good luck. It seems like the two worst words in the English language when someone says it and really means it are: “F*ck You.”

Who was this man? Who didn’t I credit? What’s he talking about? Is Kevin even his real name?

It wasn’t until last night, in the middle of the night, as I lay awake in a river of I Can’t Sleep did I realize how profound it was that the email came in when it did. Sure, I was upset. Look, I want to crawl out of my skin and wail when I feel like people copy my work or don’t credit me. I want to email them and sue them and say It’s not fair! But I don’t. I breathe and write.

Then I write more.

The email came in and shut me down. Oh, the things that shut us down.

I went to teach my yoga class and felt ungrounded and sloppy. I was an alien and everyone stared at me with my two heads. I was tired and shut down.

How quickly I was back in the third grade, thumb in mouth, wallowing in shame. How I would have cut my thumb off if I could have. How quickly that email brought me back to school. To being shut down.

Don’t worry, I’m over it. I almost shut down. My impulse was to hide. To stop writing for a while. To stop sharing. To cut my thumb off.

You know why I won’t shut down? I have the choice.

We always do. Who or what are we going to give the power to? This “dude” (if it even was a dude) didn’t even say what he was referring to. And yet I was going to accept it as a truth? As some validation that I’m a bad person? No. My choice is No. My choice is I will not shut down.

It’s okay to get angry once in a while. Does that make me a bad person? So be it. Get angry, then let it go. As I did. But refuse to shut down.

Get angry and get it out of your body like a snakebite. @JenPastiloff (Click to Tweet!)

Suck that venom out and know that it was you who handled the poison like a champ.

If anyone tries to shut you down, you must deal with it as you would a snake bite. Sometimes you think: It’s not poisonous, keep walking. Sometimes it’s: I don’t know what to do. And sometimes it’s: I am getting this out of my body as fast as possible and running far far away because I know it will try and kill me if I let it.

You get a choice. The snake, however, can’t help its nature.

The snakes will always be there, but if we step over them and around them and keep going, we hardly notice because they mostly leave us alone.

I think there might be caves, though, where all the shut down people live. They live alone in dark holes of the earth and wait for everyone to say, “It’s ok,” before they come out. They never speak and they hardly look up. They’re scared and frail, but every once in a while when they do look up, they see a light in the sky and remember what they once were.

 Jen highly recommends this book!!

 

All Jen’s workshops and events listed here.  Up next: NYC, Dallas, Miami, Tucson, London, Vermont.

Jen Pastiloff is part of the faculty this year at Other Voices Querétaro. It is a vibrant, multi-faceted writing program in Querétaro, Mexico. Focusing on both fiction and nonfiction, as well as on the ins and outs of contemporary publishing. Application: We're keeping it simple! Admission forms and letters of recommendation are not required. Please email Gina at ovbooks@gmail.com or click photo above. Also on faculty are authors Emily Rapp, Gina Frangello, Stacy Bierlein and Rob Roberge.

Jen Pastiloff is part of the faculty this year at Other Voices Querétaro. It is a vibrant, multi-faceted writing program in Querétaro, Mexico. Focusing on both fiction and nonfiction, as well as on the ins and outs of contemporary publishing. Application: We’re keeping it simple! Admission forms and letters of recommendation are not required. Please email Gina at ovbooks@gmail.com or click photo above. Also on faculty are authors Emily Rapp, Gina Frangello, Stacy Bierlein and Rob Roberge.

Click to order Simplereminders new book.

Click to order Simplereminders new book.

 

courage, Things I Have Lost Along The Way

Roar.

January 18, 2013

beauty-hunting-jen-logo-black

By Jen Pastiloff.

Lie to me. 

That’s what I might have well have said by saying I don’t look like I gained any weight, right? It’s going to be okay, isn’t it? You are not having sex with anyone else, right? 

Tell me what I think I want to hear.

Some people like it straight. They want to be told what is. They want what is and what can be without any embellishments or I will make you feel betters. State the facts, please.

Not me.

I want to be appeased. Make me believe I am safe.

Recently, I decided that the truth is a much better version of the truth than a lie.

In my late twenties I had this boyfriend, the one who wouldn’t let himself be called “boyfriend”. I loved this not-boyfriend boyfriend . I went on the birth control pill for this not-boyfriend boyfriend. We’d been together a year, albeit a year where I was unsure of my standing with him beyond the fact that I knew I loved him and that he made me feel like I was crazy. Birth control pills meant no more condoms and that made the not-boyfriend boyfriend happy.

The first thing I remember about the garbage bag incident that red wrapper invading me with its plastic face. Everywhere I looked: red. His carpet, red, the inside of my eyelids, red. The (unfortunately for him) clear plastic trash bag had fallen over. Inside, grays and whites of innocent I will not hurt you trash, and then there it was: a Lifestyles condom stuck to a chicken take-out container. Nothing but the torn red of the wrapper visible through the clear plastic trash bag.

Of course I will take out the garbage on my way out.

The significance of images, powerful enough to place two people right there inside my mind, naked on a bed. Maybe they’re in a dark room, the blue glow of the television bobbing on the wall. The woman with him (not me), imagined as perfect and leggy.

And then there he was on top of me. All I could see were red Lifestyle wrappers like sheep jumping fences. Rows of them. One condom, two condom, three…

 

(Wow, all that work you’re doing, for nothing! All that huffing and grunting

and straining and pushing and pulling and I am not even here with you. I am an eyeball in a trash bag searching for clues of infidelity.) 

 I am lying to you. I am not here. Only my body is.

But as long as you have my body here, does it matter that you don’t have my mind too? 

I wondered how many women lied in this way? Making love to someone with their body

while their mind drifts I’m fat, who else is he having sex with, what can I eat for dinner? I wonder what time the movie starts, do I even love this guy? I wish he would hurry up, why would he want to have sex with anyone but me? Why don’t I satisfy him, Am I not enough? I’m not good enough for him, what’s wrong with me? I’m fat. Shit, I never called my mother back. I have to remember to pay the electric bill., Damn it, is he done yet? I am good enough for him, he’s not good enough for me….. No, not like that, like this!  I can’t even say that to him because he will get offended. Maybe I should try being with a woman. No, I couldn’t do that. He is such a selfish lover. I wonder what time it is, I wonder if I could fit into those jeans? Did I shut the stove? What day is it? Do I smell bad? I wonder if he thinks I smell bad? He smells kind of musty. It’s so gross when a guy smells bad. Is he done yet? Man, what is he doing? Does he think he is King Kong? Why does he play so many video games still? What? Is he five? I’m tired, Ouch, that hurts, what is he doing? I wonder if they have a class for men to become better lovers at The Learning Annexx?

His eyes, red burning slits. All I could see was that condom wrapper. Obsessed by a red remnant that was most certainly not my remnant, I couldn’t move. I was that paralyzed with not wanting to know the truth. You love me, right? You love me, right? Right? You love me?

My mind can be made to believe anything.

I’d known this all my life but the trash bag incident finalized it for me. Everywhere I looked I waited to be convinced of  I love yous and You’re safes and nothing bad will happens and I am not going anywheres.

My face in his pillow (do I smell another woman? Whose hair is that lying there?) The red wrapper actually turned into a body and that body turned into his body and his body in someone else’s body. Metamorphosis. Isn’t this, the chain of events, absolutely astounding?

How quickly the mind latches on to what it wants to believe is the truth. How little it takes to seal the deal.

You love me, right?

This logical procession of things is survival of the fittest. Except the fittest know how to survive, they know how to dispose of any evidence instead of asking me to pick it up with my own two small trembling fists. The fittest aren’t as stupid as you I thought as I waited to be convinced that the condom wasn’t his, that he didn’t know how it got there, that he swore it, that he loved me and was sorry.

I used to think reality was relative and irrelevant. Tell me what I want to hear. Tell me it wasn’t yours. Make me believe. 

Mine, and perhaps yours too, is a mind that filters everything through a vicious process of hypothetical situations, of beautifully formed sentences, of what ifs. Images left in a room of the brain to ferment will create an alternate universe where no matter what time it was with my not-boyfriend the time in my head was a red red world where he was having sex with someone other than me.

You love me, right? It wasn’t yours, right?

That really was the end of the not-relationship although it probably ended before that if I don’t lie to you. Of course he convinced me that it hadn’t been his condom. That it had been old or that it was his cousin’s and I’d nodded and said okay and shook from the I’m going be sick adrenaline in my body but I’d stayed. And I stayed. 

And for as much as I wanted him to lie to me to make me feel better in the moment, I’d known the truth all along. 

We always know the truth.

If he hadn’t lied, if he’d just said Yes, yes it’s mine and I am sleeping with someone else. Or, aren’t you at least glad I am using protection? I would have had to leave him. The lies gave me permission to stay. They gave me permission to hate myself more. The lies got me off the hook.

I am writing this from an airplane where I get some of my best (read: distraction free) writing done. I just ran into a man on the plane, who, along with his wife, sent me to Atlanta 6 years ago to visit my nephew when he was newborn and in the NICU. There were complications and he was having his little tiny blonde head scanned. He couldn’t eat. He was floppy. I didn’t even know what a floppy baby was back then. He might not survive were words nobody wanted to speak. They’d been my regulars at the restaurant where I’d worked for years. As I walked away with tears streaming down my face to get their Arnold Palmers they’d decided they would send me to Atlanta the next day. You have to be with your family. No discussion will be had. I simply had to say yes, they’d said over turkey sandwiches. And so I did.

Six years ago I went and held my sweet floppy buddy for the first time, once he was released from the hospital in Georgia.

 When I walked onto the plane this morning, the husband was on the flight, because you know, the world is really quite small like that. It’s so small that people who did for you the kindest things will pop up on airplanes Houston. He’d tried to jog my memory as if it needed jogging. As if I could ever forget them and what they did for me when I was a destitute waitress with a sick nephew. He kindly asked So, everything turned out okay then? With your nephew?

The lies. The lies when he was born and until he was two years old, when he finally got diagnosed with Prader Willi Syndrome and Autism. The subtle lies. The bold faced ones. To ourselves mainly. He is just taking his time. All babies develop differently. He’s fine. 

 When of course we knew. But how much safer it felt to be nestled inside a world where there is nothing wrong then thrown out into the wolves and the world of missing chromosomes. The wolves would eat us. Let’s stay safe. The baby’s fine. There is nothing wrong. He is healthy. Swimming with sharks was safer than telling the lies, but what did we know? We were scared, and I, for one, was used to lying to myself. It was not a foreign country. It was home.

I’d said to the kind husband It did turn out there was something. He has a rare genetic disorder. That is actually where I am going now. It’s hard, but he’s doing great. I will never forget what you and your wife did for me back then. I think of you all the time.

We hugged and took a photo together and I thought about how many people have done kind things for me along the way and how many untruths I have told myself about not deserving them.

Watching my friend Emily Rapp deal with the impending death of her baby boy I see how liberating the truth really is.

She could flail her arms and curse God and fate and Tay Sachs. She could tell lies about herself and her luck and what is in store for her (she might do this on occasion, she is a human being, after all) but the truth is what seems to keep her tethered. Without the truth she would float away into You’ll get over its and He’s going to be in a better place and everything happens for a reason. 

The truth of what is happening now and now and now. 

That is all there is.

She, nor any of us, knows what is going to happen beyond his death and that is the truest true. What keeps her writing and breathing are the sure facts of what is true now and now and now. In the moments her son has a tube in his nose for medication and some fluids. In the moments he sleeps and in the moments he is choking and in the moments she sits down to write when maybe all she wants to do is beat her fist at the sky and scream but she writes anyway.

If you face what is so, you will be the roar that wakes up the sun. You will be the day and the night and then the day again because it is the one thing no one can take away from you. The truth of what is will make you the strongest mountain lion. 

The truth will set you free some say. The truth hurts.

I don’t know, I think lies will set you free too. They will unglue you so much that you will have no idea who you are anymore as you float above everyone else with your own set of facts and knowledge. The lies hurt more than the truth but in that slow and painful death kind of way. 

The truth hurts too, at times. But, it’s what keeps you knowing this one very important fact: who you are. The fact of who you are in the world.

The truth was that I was a girl who didn’t love herself enough to leave someone who hurt her again and again. The lie was that it was all I deserved. The truth was that my nephew has a chromosome missing and he could possibly eat himself to death if not carefully watched and cared for. The lie was that nothing was wrong. The truth is that Emily loves her son and that yes, he will die. The lie is that anyone knows what that means for her or for him.

We think we are protecting ourselves when we lie to ourselves or when we have someone lie to us. Oh, our sweet unquiet minds, so prone to crave safety. So willing to cling to what is not real, to trade in lovers who don’t love us, missing chromosomes, death.

11 years ago my childhood friend came out to California to visit me after having hiked the Appalachian trail for 6 months by himself. I remember thinking it was the craziest thing I had ever heard, and also being slightly jealous because I knew I didn’t have the balls to do that at the time.

I might have the balls now.

I am the mountain lion.

I have finally been able to turn on the light and invite it in. The Truth, shivering and lonely. And unafraid. 

My friend had told me he’d started with a huge backpack and that by the end it was almost empty. All the weight he’d shed during the hike. He said he’d gone to find himself and I remember thinking at the time that I didn’t know any guys that talked like that. Find himself? Find the truth?

I asked him how he’d managed though, at the end, with almost nothing in his pack? Didn’t he need stuff?

Nothing is lost when you dump the untruths. It’s the letting go, the starting out with so much weight and ending up with water and a sleeping bag.

The truth is your sleeping bag. It’s your water.

It’s what carries you the rest of the way from here.

It’s what says Yes, I do love you and I have been here all along. Waiting.

It’s what takes your quivering body lying there in the corner of your kitchen floor and picks it up. It’s what turns you into the strongest mountain lion.

Speak the truth. 

You know what? Fuck that.

Roar.

 

 

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it's magical.

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it’s magical.

 

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

click to order Simplereminders new book.

click to order Simplereminders new book.

Guest Posts, Inspiration, Positively Positive

Carfeul When Judging.

October 24, 2012

Whoa! My sister Rachel Pastiloff is on fire! She flew from Atlanta to assist me in my biggest ever Manifestation Retreat last weekend, led her own for Cedars Sinai Hospital on Monday and today her first blog post is up on Positively Positive. Way to manifest!

Click here to read article “Be Careful When Judging.”

Here’s an excerpt:

It isn’t polite to stare, but since you are, let me break it down for you. This is my five-year-old son. He suffers from a rare genetic disorder called Prader Willi Syndrome and autism. Although he may look “normal” to you, I assure you that he is fighting many battles. Before you judge my behavior regarding how I handled my son, you should know this: I only slept for three hours last night. My son is sick, and when that happens, his behavior becomes more than any of you could understand. My husband and I are in the middle of the most difficult financial time of our lives, and I am dealing with my mystery medical issues that seem to elude my doctors. I am human; I am not a robot. I have one child with PWS and autism and a second with hyper-activity and mood dysfunction disorder. I may have looked like a crazy woman to you, but you couldn’t imagine that I have been up handling this since 4:00 a.m. today.

Please support her and leave a comment on the post. I am so proud of her.
I also thought I would add this amazing letter written to Ann Coulter by a man with Down’s Syndrome in response to her calling Obama the “R” word.
Please read this. It brought me to tears.  

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

healing, Inspiration, Mindwebs

Ghosts.

September 22, 2012
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I was driving down Main Street in Santa Monica last week and I thought I saw my mom’s second husband. My stepfather Carl.

He died in 1993.

A week before I graduated high school we got the call that he died in his sleep, a call so unexpected that you move the phone away from your ear to look at it and make sure it is really a phone and that its really a voice on the other end saying Carl died in his sleep last night. So we boarded a plane and flew from New Jersey out to California to help go through boxes and pictures and things that had belonged to him. My mother and Carl had divorced a few years before. Looking back I can see what a complicated beautiful mess this relationship was, what a complicated beautiful mess all relationships are really.

Why were we the ones to fly out and sort through a dead man’s stuff? I think now, from the vantage point of 20 years too late.

I am here now in Atlanta, just outside of Atlanta actually, down south in McDonough, at my sisters, where we just finished a fundraising walk for my oldest nephew who has Prader Willi Syndrome. PWS, as its called, is a rare genetic disorder with a host of shit that goes along with it but the most well known and unfair is the feeling of starvation the people who have PWS experience.

Blaise, my nephew, was eating out of the trash can tonight.

You catch him and he hugs you right away because he knows how to manipulate. Like we all do. It’s heartbreaking to think that he has to manipulate for food. The other kids today at the walk ate like they were never going to see food again whereas with Blaise we have to be constantly vigilant. He can literally eat himself to death. He can have a piece of banana. He can have just more snack, just one more, then that’s it, really that’s it, this is the last one.

My mom and my sister and me get together. And we fight. We are transported back in time and every reaction is a reaction to something in 1993 or in 1978. And Blaise is in the garbage eating banana peels.

All relationships are complicated beautiful messes.

Filled with ghosts.

We flew to California in 1993 a week before I graduated and went through pictures of Carl’s ex-girlfriends and then we spread his ashes out in the ocean in Malibu. I was so thin that people thought I was dying and I quite liked that. It made me feel something and nothing at once. Pretty much how most people feel when someone dies anyway.

Last week I saw a man on the corner, leaning into the light post, waiting for the Walk signal. He had a wetsuit on, a beard, barefeet, surfboard. I almost got into an accident right there on Main. Carl? It wasn’t him. Surely it couldn’t be. We went through his things and we drove to Malibu and read poems about him as his brother rode out on a surfboard and left him out there on a wave.

But God it made me miss him. It made me remember. Maybe that is why we see ghosts? So we don’t forget?

He would run to the beach barefoot. Then he would come back to the condo we were living in and chase me. I hated how he smelled after his run. You have b.o! I would yell and he would laugh and laugh and run around the sofa and try to catch me in his barefeet. I would laugh too even though I was equally mortified.

What if we had no ghosts?

What if every moment we were, we just were? What if there was no prior? No history? What if you could just be with your family and not be transported back into childhood with all of its ghosts?

The bare feet are what got me with that man on the corner the other day. That and the red beard. The signs were all there. Remember me! 

The ghosts are alive and well here in Atlanta. Maybe that’s what drives my nephew to the trashcan to find food. My younger nephew Maddock looks just like my father Mel. He asks us Why he died? Why Grandpa Mel died?

Tonight he came in and tattled on his brother Blaise (who had taken my iPhone and called certain friends 40 times) that Bwaise is cawwing people.

He told me: Bwaise called Grandpa Mel.

Did he?

I don’t know, the signs are all around us. The ghosts never want us to forget them so they send missiles and food in trash cans and memories and red beards and other things to wake us up. The trick is, the real work is, to not pay too much attention to them.

To just acknowledge them with a nod, and keep on keeping on.

It’s funny, I have been wanting to write about this since I saw my dead stepfather’s ghost on the street in Santa Monica last week, and then tonight someone who took my classes religiously and then moved away sent me this blurb he wrote:

God give me the strength and the energy to be the superhero that I am today. And give me the insight, to see the signs, that point the way to the light.

Then he said:

YOU ARE A SIGN HOLDER, JENNIFER. YOU TOTALLY POINT THE WAY.

Maybe I am somebody’s ghost already.

They are everywhere.

manifesting, Q & A Series

Chalkboard Mag.

August 21, 2012
Click photo to read the q&a

Wow wow wow.

I love The Chalkboard Mag so it was a huge honor to get interviewed by them!

Click photo to read the q&a

 

“Have a sense of humor especially when it comes to yourself, have more dance parties, let your joy be contagious so if you forget it you can catch it from someone else, have that glass of wine if you want it and be nice, dammit!”

Thank you Katie Joy Horwitch for conducting the interview!

Click here to read the piece.

Guest Posts

Joys of Motherhood

August 20, 2012

Joys of Motherhood.

This is a beautiful blog by my sister about my nephew Blaise. Blaise has come so far since he was diagnosed with Prader Wille Syndrome 3 years ago. Please check this blog out. It is gorgeous.

When I finally collected myself I was filled with questions.

What will my son look like?

Will he be morbidly obese?

Will he fall in love?

Will he have friends?

Will he be bullied in school?

Will he ever talk?

Will he ever play sports or swim in a pool?

Will he live on his own and go to college?

What will his life look like?

Click here to finish reading….

Prader Willi Syndrome, Q & A Series

The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom.

July 20, 2012
Blaise and Maddock having the giggles.

Welcome to The Manifestation Q&A Series.

I am Jennifer Pastiloff and this series is designed to introduce the world to someone I find incredible. Someone who is manifesting their dreams on a daily basis.

Ok, maybe I am a bit biased because Rachel Pastiloff is my sister but she is the coolest person I know. She is an amazing mom, yogi and writer. In fact, she writes my favorite blog called 3 Words For 365. She is also the founder of the Facebook page I Am A Fan of Somebody with Prader Willi Syndrome (my nephew has Prader Willi Syndrome.)

Below find her inspiring Q&A where she talks about being a mom of a child with special needs, quitting smoking and becoming a yoga teacher among other fabulous gems.

I am so proud of my sister, who also happens to be my closest friend. I have invited her to assist me at my Manifestation Ojai Retreat Oct 19-21 in Ojai, which is almost sold out. Click here is you want to sign up. She will also be assisting me at Kriplau at my weekend program there Feb 1-3, 2013. (Email me to sign up for Kripalu weekend in the Berkshire of Massachusetts.)

Get ready Atlanta, because Rachel will be taking Manifestation Yoga to new heights. 

Put down whatever you are doing and read about her inspiring journey and her love of meditating, pizza and her boys.

My sister Rachel and I with our beloved Steve Bridges who passed away shortly after my Mexico retreat. This was taken in Mexico at my retreat.

Jennifer Pastiloff: What are you most proud to have manifested in your life?

Rachel Pastiloff: I am proud of manifesting my children. They are my greatest gift in life. They are my teachers, my best friends, and the most honest people I know in this world. They give my life purpose and a reason to wake up and smile at the sun everyday. I am proud to have manifested amazing relationships in my life with my family and new and old friends. I am blessed to have the most amazing relationship with my mentor, the incredible Jennifer Pastiloff, the one who inspired me to Yoga Teacher Training, and to start writing my blog. I feel blessed to have people who believe in me.

Jennifer Pastiloff: What is the greatest lesson you have learned this past year about yourself?

Rachel Pastiloff: That is really an interesting question. I have learned so many lessons about myself this last year. I have learned that I am lovable and worthy of being loved in the truest form.  I have learned not to have expectations. I think the most important lesson I learned this year was how to communicate with people in an authentic nature. We take communication for granted. We hide behind our emails and texts and forget what it feels like to be part of a community. The greatest lesson I learned was to have courage to live with my heart, that helps me communicate much more effectively with not only my children and husband, but my community at large.

Jennifer Pastiloff: What is the greatest lesson you have learned from your boys?

Rachel Pastiloff: The greatest lesson I learned from my boys is to wave your Freak Flag high. We all are different. We all love differently, learn differenlty, look differently, but inside we all want the same thing. TO BE LOVED. My children are such resilliant little creatures full of wonder and they are oblivious to much of the discrimination that fills our world. I get strength from them to realize it is ok to be different, in fact I am rather fond of being “Not Normal” it fits me and my personality just fine.

Jennifer Pastiloff: From having a child with Special Needs?

Rachel Pastiloff: Having a child with special needs is a challenge, but one that I happily face everyday. I have always been what I considered a strong person, but this challenge took me to new heights. I have learned how to have real compassion, real strength, and unconditional acceptance. There are days that go by with no problems, not most, but some.  Then there are days where I feel like I am drowning. All these days offer me the gift to grow and learn and keep building compassion in my life. As the parent of a special needs child I see all the things he does as miracles, things that many parents of “typical” children take for granted. I celebrate all the moments, be they big victories, or just small baby steps. I am filled with pride for all that my child accomplishes everyday. He is definitely not a quitter, and it pushes me on to higher mountains with him everyday.

Blaise, who has PWS, rocking out! He loves music.

Jennifer Pastiloff: Can you tell us about Prader Willi Syndrome? I think most people do not know what it is.

Rachel Pastiloff: Prader-Willi Syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity. The symptoms of Prader-Willi Syndrome are thought to be caused by dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, sleep-wake balance, fluid balance, emotions, and fertility. Although hypothalamic dysfunction is believed to lead to the symptoms of PWS, it is not yet clear how the genetic abnormality causes hypothalamic dysfunction.

Basically, to sum it up it can be said that it is a syndrome of STARVATION. To learn more please visit www.fpwr.org.

Jennifer Pastiloff: What is your vision of yourself in 1 years time?

Rachel Pastiloff: In one year from now I will be teaching yoga full time. I will have my meditation practice down to a definite everyday not matter what. I will have surrounded myself with amazing people and infinite possibilities. I plan on traveling with my sis Jennifer as much as possible. Doing yoga as much as possible, oh and let’s not forget that I will be writing a book. I hope to have my book out in 2014. If you need inspiration I got plenty to go around.

Jennifer Pastiloff: What has been the toughest decision you have ever made?

Rachel Pastiloff: The toughest decision I ever made choosing to live a life of sobriety and health, simultaneously I moved to the other side of the country from my family, the people I am more in love with then anyone. It was the toughest and the sweetest thing I ever did for myself and my body. I am such a blessed person now to have seen the other side of a the “dark knight” that we all have at least one of in our lives. I am 34 years old now and loving every minute of my life.

Jennifer Pastiloff: Who/what inspires you the most?

Rachel Pastiloff: I am inspired when I see people being kind to my son, not because they have too, but because they want to . I was inspired the other day as I watched a car drive by and offer an umbrella to her mom and baby in the rain. I am inspired when my family and friends live their dreams and happiness in their lives. I inspired by real love and real friendships. I am inspired by myself and who I am today, as I look back on who I was 7 years ago. It is pretty damn close to a miracle.

Jennifer Pastiloff: What do you think your Dharma or you’re your calling is?

Rachel Pastiloff: I believe that my calling is to work with people. I can’t say that it is limited to yoga, but I am here to connect people. I think I am here to inspire people to live their fullest potential. It may be that it happens through my book, my blog, my yoga teaching, or my energy work that I plan on studying soon. I feel as sense of onenes with the world and that is “Where I live!”

Jennifer Pastiloff: What was your “aha” moment that this was what you were meant to do with your life?

Rachel Pastiloff: At the hospital recently with my father in law. He was in severe pain and I just put my hands on his legs. He asked me what I was doing? My reply was energy work. I was focused on sending all the light inside of me to his legs where the pain was. He told me that he felt it very strongly and that it was working. I knew right then that there is a light in me that burns bright, and I am just on the verge of recognizing it.

Jennifer Pastiloff: Who has been your greatest teacher?

Rachel Pastiloff: Oh such an easy one to answer. You, my dear sister have been my greatest teacher. I am so overwhelmed at your dedication to me, your faith in me, and your constant hand that is always there to hold. It has without a doubt brought me to the place I am today.

Jennifer Pastiloff: I love how after my Mexico Retreat, you came home and decided to quit smoking and sign up for a yoga teacher training in Atlanta. Tell us about that.

Rachel Pastiloff: WOW….I came back from Mexico, but not as me; as somebody else. I left the old me back in Xinalani. I realized that smoking did not serve me anymore and with no help at all, I put those smokes down and never looked back and that was over 4 months ago. As nervous as I was to start teacher training it was the ultimate gift I ever gave myself. I am a new woman. One who loves her self. Takes care of herself and, oh yeah can do a handstand. Oh yeah baby!

Jennifer Pastiloff: What would a snapshot of Rachel Pastiloff’s day look like?

Rachel Pastiloff: Are you sure you want an answer to that? Ha.

Today I have been up since 4:30 with Maddock, and he never napped. I spend all day running around trying to keep the children active and happy and away from food as much as possible. I usually don’t ever get a minute to sit down, and yes there are days where I just feel that I have been given more than I can handle, but those days are rare. Every day is a new day, a fresh start. Life is hard having a child with PWS and Autism and another child with a mood disorder and severe ADHD. As long as I am meditating I can stay calm through the storm. It has saved my life, literally.

Jennifer Pastiloff: I remember 3 years ago when Blaise was diagnosed with Prader Willi Syndrome like it was yesterday. What would you say to someone who just found out their child has PWS?

Rachel Pastiloff: Don’t panic, all will be OK. It is the scariest diagnosis to receive but our kids are amazing. My son has accomplished all and more than I ever could have imagined. My heart hurts that he feels hunger, but that will be gone one day as we find a cure. Reach out the PWS community. We are large and strong and a definite family. You will never feel alone. Our kids are unstoppable and capable of climbing the highest mountains with the right guidance.

Jennifer Pastiloff: What would you say to your 16 year old self?

Rachel Pastiloff: I would definitely say to myself that boys are just not that important and to focus more on what matters to me. HA HA. I think really what I would say is have confidence in yourself. Find what fulfills you and fill your heart with love. The most important thing I would tell young me is that you can’t ever fill the void in your heart from the outside in. All good starts within you and doesn’t’ come form the validation of others.

Jennifer Pastiloff: Gratitude is the greatest force In my life. Most of my classes are set to this theme. If you could say thank you right now, who would it be to?

Rachel Pastiloff: I would say thank you to my mom and dad. Although my dad has been gone for almost 35 years he gave me life, and big blue eyes, so thank you. Thank you to my mom for teaching me how to be a woman who can do anything on her own. Thank you to my step-dad Jack, the man who has been with me through my teenage and adult years. The man who is always there if I need him, the man I feel true strength and comfort with. Thank you to my sister for being the the push that I needed in life.

Jennifer Pastiloff: What fulfills you?

Rachel Pastiloff: A good meal fulfills me, especially a good pizza. No, OK. I am fulfilled when I am fully self expressed, and when I am not looking outwardly for confirmation of who I am. When others see me as a calm and together person I feel so fulfilled.

Jennifer Pastiloff: I know these past few years have been really hard for you. What has been the silver lining to come out of those years?

Rachel Pastiloff: Yes, the last few years have been really tough. The silver lining is easy. I live everyday as a new day. I never ever think of myself as broke and I always believe that things can work themselves out. This keeps me going everyday of my life.

Jennifer Pastiloff: What are some words you live by?

Rachel Pastiloff: Words to live by are:

Integrity,

Faith,

Love,

 Kindness.

Jennifer Pastiloff: How do you stay connected to your own bliss and sense of self while dealing with 2 children, one of whom has Special Needs. I know you spend almost every day at a doctor or therapy appointment.

Rachel Pastiloff: I stay connected with my bliss by meditating. I take those few minutes to myself and it is truly blissful. I also take time for myself before where that was a fantasy in the past. I live bliss now, even when I can’t get my private time, I make time for me to write, or read, or meditate, or rest. My body shall be neglected no more.

Jennifer Pastiloff: What are your favorite 3 memories?

Rachel Pastiloff: Driving cross county with you and mom is one of them. The other two are easy. The day Blaise was born and the day Maddock was born. My life changed forever. I am happy to say for the better.

Jennifer Pastiloff: Can you share with us about your yoga/meditation practice?

Rachel Pastiloff: I meditate every day for 15 minutes twice a day and that is what keeps me sane. I take as many yoga classes as I can in a week. When I am home with the kids I start doing yoga in the house all around their chaos. If they are playing I will do a bridge pose and they can play under me. You do what you can. You get creative when you are a mom.

Jennifer Pastiloff: What’s up next for Rachel Pastiloff?

Rachel Pastiloff: Opening my own yoga studio. Traveling as much as possible. Reading at least one book a week, and studying energy healing. I think that is as much as I can fit into my day as possible. 😉

Blaise and Maddock having the giggles.

Rachel and Blaise

Rachel and Maddock when he was a baby

Connect with Rachel on Facebook here. 

Connect with Rachel on Twitter @manifestingmom

Follow her awesome blog 3WordsFor365

Rachel’s family.

 

Maddock chilling out!

Taken in Mexico at the life-changing retreat

taken in Mexico!

Uncategorized

Angels in Heaven

May 22, 2012

Angels in Heaven.

This is a MUST READ. Please stop what you are ding and read my sister’s latest blog.

I had an incident this week with Blaise ingesting medication, even with the child safety lock on he managed to get the lid off and drink the bottle. My heart stopped and it hit me like a sledge hammer to the head. My child could DIE because he is so hungry he would drink medicine because it tastes good………

Click here to read full blog.

Prader Willi Syndrome

What Do You Do When You Buy 2 Nights at a 5 Star Hotel in Paris By Accident?

May 1, 2012

What do you do?

Have Faith.

You gotta have it.

So says George, at least.

On Saturday I went to a gala for Prader Willi Angels. My nephew has Prader Willi Syndrome, a rare genetic disorder and I pretty much love him more than anyone on the planet, so I thought I would go.

My awesome nephew and buddy Blaise who has Prader Willi Syndrome

Tickets were $150 and all money raised would go toward research. 

I was down.

Plus, I had never been to a proper gala so I was excited.

I’d get to change out of my Lululemon gear? Sweet!

So I get kind of dressed up.

My friend decides to join which I think is amazing because it is $150 after all and that’s not chump change for most. I pick her up and we look super cute together except for the fact that she is about 6 feet tall and I am closer to 5 feet so I look like a Smurf. Otherwise, totally cute. It’s even being at the Jonathan Beach Club in Santa Monica.

Swanky.

My awesome friend Elizabeth aka Cherry who came out to support Prader Willi

First mistake: I get a vodka and soda with my drink ticket. (Yes, I teach yoga. So?)

I should have known when the bartender says, ” Heavy on the vodka? Easy on the soda?”

I thought she was kidding.

She was not kidding.

So, it’s my first gala and all and I don’t really know what the proper etiquette for a gala is  (I mean, what is a gala anyway?) I start looking at the stuff being bid for the silent auction. With my vodka soda in tow.

I ask ” All the money goes towards research, right?”

Answer: Yes.

Second Mistake: I put my sticker 395 down under $30 for a Brazilian blowout in Sherman Oaks which I will probably never use because the valley is like going to New York when you live in Santa Monica.

But hey. It’s for charity.

(Yes, I won it.)

Then I see it: French Kiss it says. Luringly. (This is really the 2nd Mistake but by putting my sticker down on the first thing I got myself in trouble. Downhill from that there Brazilian blowout in the Valley.)

What’s this? I ask as I sip my drink.

Well, well, well.

It’s a 5 star (yes, 5 star) hotel in Paris.

Le Bristol.

A 2 night stay worth $3,500 dollars. (My eyes caught fire when I read that.)

So I took another sip to cool down.

I was going to be in Paris in July after my Italy yoga retreat! Ding ding ding.

3rd Mistake: Yes. I did it. I put my sticker down. Number 395. Lucky Number 395, that is.

A woman was lurking. She wanted the Paris hotel too.

It made me want it more.

(Side note: they had swiped my emergency American Express card when I walked in just in case I bid on anything and won.)

I wanted it now more because this woman wanted it. (I’m telling you, I really am quite yogic. I am not sure what got into me.)

Oh yea, a vodka soda and a little healthy competition.

4th Mistake: She walked away and I put my sticker down. Again.

The auction ended.

Yes, dear reader, you guessed it.

I won.

Ok Jen, I told myself (out loud) You may not have this money. This may be on a card your husband got you for an emergency but it all goes to research and it’s worth $3,500 so really you got quite a deal at $1,560 dollars for 2 nights in Paris. I mean, it’s a steal. It’s like for free!

Jokes aside, I panicked a bit. I really did not have that money to spend but I knew it all went to charity so I just breathed. Loud and hard. But I breathed.

I took a picture of the gift certificate I won to show the Peanut Gallery (aka my husband and mom.)

5th mistake: I take a picture of said certificate and leave it at the flipping Jonathan Club.

I get home and I realize it is gone so I put on flip flops and drive back and march back in and dig in trash cans.

Nope. Nothing.

(You have to just pause and laugh here because it is too funny.)

I immediately email the hotel ( I had taken a picture of the certificate so I knew the email) and I cc’d the girl who ran the gala. I would have to be able to get a new certificate.

Right? Somebody please tell me Right!

So here is where faith enters:

It is okay that I spent that kind of money. My first instinct after I did it was to say “Who am I to spend that kind of money? I am just Jen.”

Screw that tape! I am Jen! I am Jen and I deserve this.

Also, the money will come back to me. It always does. Always.

I also have faith that this ridiculous amount of money I spent for 2 nights at a hotel will help find a cure for my best buddy Blaise.

I also have faith that it will all be worked out and they will be able to easily get me a new certificate so I can indeed book those ridiculously expensive two nights.

I have a vision and I hold it in my heart.

This vision is:

Me hanging out at this Parisian hotel and writing my book. 

My nephew and all the other PWS angels never having a hunger pang again.

Money never ever ever being an issue for me.

I have faith in these visions.

In the meantime, check out this hotel. And keep me away from galas, vodka, silent auctions and Brazilian blowouts.

Just a bit of info on PWS: Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as a common genetic cause of childhood obesity.

PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they had examined. The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia at birth, insatiable hunger, extreme obesity and intellectual disability.

Please please please vote daily on this video to help get PWS to the White House so we can eliminate these challenges once and for all.
Here it is.
It will make all the difference in the world.

Renay Compere, far left, owns Pop Physique in Santa Monica where I host my workshops and has a son with PWS

manifesting, Wayne Dyer

Hanging with Wayne Dyer in Atlanta.

April 14, 2012
photo

With God all things are possible. 

Wayne talked of this a lot today. Now, I have heard him speak a lot. But today this got me. A chill ran through my body, as it does more and more lately. A sign that I am paying attention to what resonates. Or that more is resonated lately? That I am connecting to things I am meant to be connecting to more often?

All of the above.

And then some.

All. Things. Possible.

So what does that leave out?

NOTHING.

I love this.

I had that feeling today as I sat there in the second row as a guest of the author, my sister Rachel on my side. All the Dyers and Anita Moorjani and her husband wearing my blue Manifestation bracelets. Sara Blakely, founder of SPANX and the world’s youngest billionaire wearing my Manifestation bracelet.

Why?

Because: Anything is possible.

I dreamed this.

Over and over.

This is the life I want.

I want to be inspiring people on the level of Wayne and Anita and Sara. So why should I not be hanging out with them?

I told Wayne about my retreat to Maui next February and asked him if he would come over and talk to my group. He said “Anything is possible. Why not?

Ha! Wayne at my retreat? Pinch me.

(Who knows what will happen but… anything is possible kids.)

He told a great story today which I loved. He had just led a retreat on a cruise ship and he had asked everyone to go out and stare at the wake from the ship. He asked them to contemplate the wake. ( I feel a poem being inspired here already.)

The wake is the trail the ship leaves behind.

3 questions he told them to ask themselves:

1) What is the wake? Answer: the trail.

2)What is driving the boat? Answer: the PRESENT moment energy being generated is driving the boat. ( Key word: Present. Obviously.)

3) Is it possible for the wake to drive the boat? Answer: NO.

He suggested that most of us live this illusion though. The wake driving the boat! Ha!

I had such a breakthrough today. That kind of aha moment that happens before inspiration sinks in and kicks you in the teeth.

I think it is the poet in me that loves a good metaphor but, wow, is it ever an opportunity to give up your personal history, your crap, your story, when it is put so succinctly. So simply. So truthfully.

Another gem from today: Inspiration is when an idea gets ahold of you.

Motivation is ego driven.

Now that is something to think about.

I’d much rather be inspired.

As I am now in my life.

An idea has gotten a hold of me and I am being channeled. This is the best way, the only way I can truly describe my life these days.

Today Wayne said: writing is not something I do. It is what I am.

How beautiful a sentiment is that?

He talked so much about the “I Am” and I was so happy to be wearing my ” I am” Conscious Ink tattoo ( I gave him some and he went wild for them!)

Wayne talked about Divine Love as never changing, never varying.

There was so much to process today that it will take a few blog posts. Heck, a few years, but I wanted to share with you some inspiration and highlights.

Anita Moorjani, whom has become a friend, got up and spoke. She had a Near Death Experience after having Stage 4 cancer.  She came back because she has work to do. (Thank God she came back!)

Her message, to remind us all to be ourselves, is simple and IMPORTANT. She says more important than being positive is being yourself!

Her book Dying To Be Me has been called, by many, the most important book they have ever read. Wayne is a huge fan of Anita, as am I. She is so incredible, as is this work she is doing. Please take a moment and read my earlier interview with her.

She will change your life. As she says, remember your magnificence.

My dear friend Anita Moorjani. Please buy her book “Dying To Be Me”. It will change your life. Seriously. Go!

As usual my friend Skye sang (Wayne’s daughter.) She added Whitney Houston’s Greatest Love of All which made everyone bawl, of course. Saje Dyer also got up and spoke. She is Wayne’s youngest. Adorable and hilarious. She talked (spontaneously) about how she healed herself at age 5 or 6 with a child’s belief system. It was so beautiful and funny and impromptu. Another Dyer with a big inspiring future in front of her.

Sommer Dyer was also there, who will be guest posting very soon on my blog. Wait until you read this Dyer daughter’s post. She is very special to me.

Sommer Dyer, Saje Dyer, me , my sister Rachel, Skye Dyer

I met Tracy, his eldest and bought a purse from her amazing company Urban Junket. Tracy is gorgeous and funny. It’s like there is something in the water they drink? Tracy creates purses from recycled water bottles. Hello, Awesome!

My sister and I each bought one. Get one. They are cute and support the Earth. Hello, More Awesome!

Lastly, Sara Blakely. The world’s youngest billionaire and founder of Spanx. She got up and said a few words about how Wayne had been a great inspiration to her and was one of the reasons she is so successful. I gave her my blue Manifestation bracelet which you can see in the photos and my Manifesting tee. She was talking to us forever. To say she is cool would be an UNDERSTATEMENT.

The coolest billionaire I ever met.

And she is manifesting, no less.

Bam!

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Wayne and Sara Blakely are so funny! They are showing off their Spanx! ha!

My dad and his other daughters. Hee hee.
Saje, Sommer, Wayne and Skye Dyer.

Tracy Dyer and I. I am holding up my Urban Junket bag. Recycled Water Bottles. Bad-ass!!!

My buddy Skye Dyer and I. She sings so beautifully.

Skye singing on stage with her dad. So moving.

Saje got called up. Surprise!
She was funny and inspiring.
You can heal yourself with LOVE, she says.
This girl rocks so hard.

So here it is:

I am manifesting:

Sara Blakely sponsoring my sister’s One Small Step Walk for Prader Wille Syndrome and doing a q&a on this blog, as Wayne did.

Wayne Dyer definitely coming to my Maui retreat next February. It’s happening folks. I see it. Book early as we will go deep and it will be intimate. (click here to sign up.)

Wayne writing the foreword for my book.

Writing for Oprah.com

 

 

Join me here at @jenpastiloff

Join me here at @jenpastiloff