PWS

By 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.

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.