By Jen Pastiloff.
So last night I was waiting to board my flight at JFK.
It was a long day. We (hubby and I) had taken the bus Sunday morning from NYC to New Jersey, after my “birthday that never ends” celebration. I had never done that before- really let myself be loved like that. It was also the first time I traveled that wasn’t work related in ages.
It felt good.
It was the first time my husband came back east with me and met many of my friends and my family and got to see where I was from. We have been married 5 years this coming February and it was the first time he has come back with me, so it was special.
On my actual birthday, I saw one of my dearest friends, Laura Donnelly, shine on Broadway in The River. I sat there and watched someone whose dream was realized- she was onstage in this gorgeous red dress and she sang and I thought,”This is my friend. This is my people.”
And I teared up. Because, Fuck yeah! She did it!
I hung out with Hugh Jackman on my birthday. <<< Yea, that’s kind of amazing. I could probably stop this blog with that line. “I hung with Hugh on my birthday.” I sound like an asshole. Don’t be an asshole, Jen.
Eff that. I shall be an asshole. I hung with Hugh on my birthday. And he is just as lovely as you would imagine. Kind and funny and generous and present and humble.
I’m getting back to the JFK bit, bear with me.
I hung with Hugh Jackman and drank tequila with him and he made a “don’t be an asshole” video with me and then my friends took me to the fanciest dinner I have ever had in my life- 7 courses at Jean-Georges. In true NY fashion, we didn’t start eating until midnight. And there were copious amounts of wine. And dessert.
I spent the following evening at Viceroy New York (thank you for the champagne!) with so many of my beloved friends, some since childhood. And my husband. And my agent came. And I was in NY! My first roommate from NYU came. My friend Tanya (owner of tanya-b clothing line, who organized Saturday’s party and who I am flying out to NYC to do a photo shoot for on Jan 12) gave me a candle with a Biggie Smalls quote on it. It said, “It was all a dream.”
I had the candle in my pocket and I thought, it was all a dream.
Who’s to say which is the dream and which is real life? I sometimes wonder this.
One time, when I was leading a retreat at Kripalu (were you worried I was going to say, One time, at band camp…?) I was getting a massage and I said to the woman, “I don’t want to go back to real life.” She said, “This is real life. This. Here. Now.”
And I thought about how she was right. Maybe that’s not even what she said. I was in massage-land but she said something to the effect of letting the fantasy part feel “real.” Because me? I always worry that the other shoe is about to drop. This is going to end. I have to go back to real life and real life is bad and messy and painful and something always hurts. This is going to end- I always think that. And yet- it will. It all ends.
But letting go of the idea that just because something good happens to me or for me or I am happy means that something awful is waiting is some straight up bullshit.
I went to bed happy.
The next morning Robert and I took the bus to New Jersey so we could drive to Delaware with my mom and visit Benny in the hospital. Those of you new to my page, Benny is a little boy my family and I have fallen in love with, who has Prader Willi Syndrome like my nephew Blaise. He is legally blind and just had a terrible accident that has left him paralyzed. Benny loves princesses.
For my birthday, I knew that the one thing I wanted more than anything was to meet him.
So I made that happen.
We drove to Delaware bearing the gifts (all princess stuff) that people had given us for Benny. People like you who have never met him but have been following his story. Someone brought me a present to my NYC birthday party for Benny. It was the greatest gift. Made me cry. She said she had gone to FAO Shwartz and that she “had no idea princesses were so confusing.” People can be so good when they aren’t being assholes. (Myself included.)
This little boy is such a warrior.
I won’t lie- I have been struggling with understanding why some people have to have so much pain in their lives? This kid has so much with having Prader Willi (google it, it sucks) and being blind. And now, he is fucking paralyzed? I wish I had a greater faith in times like this. I’d say, “Take me!! Take me!” but truly, I am not sure who I would be saying that to. How much can one little boy take??
And then this, in Pakistan this morning as I was posting this blog. All these children. Why? Why? Fists to the sky! Why!
Benny was so grateful to for his ice skating Anna princess doll and Frozen blanket.
My mom tried to record some videos but did it backwards. Off was on and vice versa. (Mom!!!)
Later, when I was upset by this travesty over my saag paneer, my husband reminded me that it didn’t matter, that the video was more about me than Benny. He said that the most important thing is that we were there- we met him! This is true. He is wise. ( Don’t be an asshole and make it about you, Jen.)
But, in my defense, I wanted a video so I can keep reminding you guys of him. I want to make this little boy’s life a little brighter. Don’t forget him, ok? Keep sending the well wishes and cards and princesses. It is getting his family through this like you wouldn’t believe. Every time his mom feels like she can’t bear another minute, a card or gift arrives in the mail.
His mom pointed to this picture on the wall of Benny with his twin brothers and sisters and stepsister.
It was taken nine months ago. She kept touching it as if it would take her back to the past.
I know of this wish.
On the way to visit Benny, we- my mom and Robert and I, stopped to visit my dad’s grave at the Jewish cemetery where he is buried in Pennsauken, New Jersey.
I never go there. It’s not my dad.
I feel guilty that I don’t visit. I hate being vulnerable- for the all the work I do on getting people to open up and become vulnerable, I can’t do it. Going to the cemetery makes me sad. I cry and get angry and I feel really vulnerable. So I avoid it. But we went. And the grave is gorgeous. My mom did a beautiful job. 1983- what a long time ago.
I still feel that young when I go there. Son of a bitch, why did you go and die? I say it every time I visit. And then I cry.
There were stones and dried roses on the headstone. My sister called and laughed and said, “Every time I go to his grave, they are there. Maybe Daddy had a secret lover?” After which I kept singing the awful Atlantic Starr song Secret Lover, to which I knew (weirdly) all the words.
But I stand there in that Jewish cemetery and think sometimes that if I touch the sun on my dad’s grave that it will take me back. It might help you understand my obsession with anything time travel related. It’s never worked, time travel. Not for me anyway. But I understood Benny’s mom trying.
It was humbling being there with him. He was in so much pain, the poor baby. The nurses came in, it took two of them and his mother to get him from the bed to the wheelchair. There was this contraption on the ceiling, which hooked on to him and helped support him as they moved him. It was hard to watch. He held onto his new princess doll as he was shifted from bed to chair.
We wheeled him down to Einstein’s bagels so he could have a bagel and cream cheese for dinner. Let me at least buy your bagel, Benny, I said in some weird hybrid New York Jewish Grandmother voice I use sometimes. Maybe my own Bubby sounded like that? I can’t remember. The news of my father’s death killed her in her nursing home. She just couldn’t handle it. I get that.
His mom giggled. She let me buy Benny’s bagel.
Benny held his water cup and was able to sip from it a bit. His mom asked him if he was showing off for me. He laughed. We all clapped for him. Yay, Benny!
I told him that I saw pictures of his birthday party with all the princesses from October. Michelle had arranged and hired princesses to come to the house. It was before his accident. The pictures and videos were so sweet. I thought it would light him up but he turned to his mom and said he didn’t want to talk about it, that it made him sad.
He doesn’t understand why they just can’t “fix” him.
He was in so much pain and could barely keep his eyes open- the max he can stay awake is an hour or two.
I got one tiny video for you. It’s 5 seconds. I have watched him 67 times since we left.
Don’t worry, I am coming back to JFK where I started this. It was actually a Facebook status update that I was writing but went on so long that I decided to make it a blog.
Monday morning we were at my aunt’s house (she is not really my aunt but we have called her that my whole life so I guess, back to the old it was all a dream thing, right? Who’s to say?) She told us this story about this family she knew who lost their son when he was 25 year old in a car accident. The son loved his nieces and nephews and always gave them Tootsie Pops. She tells us that the parents decided to cremate him and finally found an urn online that they wanted to use. It had something about golf on it and their boy had loved golf. So it comes in the mail, brand new, from the company, and they open it and there is a Tootsie Pop in it. Their son’s favorite thing. And they thought, it’s going to be okay.
My aunt’s friend Sue was there whose husband has just died of cancer. Sue said that it was her anniversary on December 3rd and that she and her husband would have been married 48 years. They had had these big Lazy-Boy chairs and would sit side by side. On her anniversary she sat in hers and leaned back and said, Ed, we would’ve been married 48 years but you went and crapped out on me. Then she said she smelled his cigar smoke and knew he was there with her.
She looked at us and said, “You know, I’m not that kind of person.”
My mom chimed in, “Airy fairy, you mean?”
“Yea,” Sue said. ” I am not that.”
It was all a dream.
Robert and I take the bus back to NYC then the subway to JFK. By the time we arrive in LA we will have been traveling for 13 hours. But whatever. Well worth every minute.
So, we’re in line and there’s this woman. She is very pretty and very skinny, and dressed to the nines. She had her son with her, who had these red clown lips that I used to get as a kid from licking them too much in the cold. We were in line in this order: Business class, Sky Priority (my section) and then coach. This woman started making a huge fuss about how she didn’t want to stand with all of us. This never used to be like this! Things have changed. I am in Business Class. Everyone stared. She is an actress and she is lucky I couldn’t remember her name because I have no shame in calling her out. It was terrible. Awful. Mind-blowingly bad asshole behavior. I know I never call others asshole, only myself, but I am changing the rules. She was an asshole. Her poor son. Having a mom that is that entitled. She made a scene. She was stomping back and forth and had to be escorted privately on the plane. I wanted to pull up Benny’s picture and ask her if she wanted to get in check.
Please, you, if anyone is reading this- if I ever, ever, ever get like that- put me out of my misery.
How do we lose touch like that? How does this disconnect happen?
This little boy can’t feel his fucking legs while this woman is stamping her legs demanding that she not stand with the regular people.
Lady, it was all a dream.
Anyway, my husband wanted me to let it go but I was so unsettled by this woman’s tantrum. I was surprised no one was videoing it. My phone was dead or I might have.
I want to be a good person. I know I can be an asshole sometimes. We all can. But I want to do good. I want to leave this world better.
It was a great birthday. I am glad I witnessed Bad Behaving Actress because it reminded me of how important humility and grace are. If your biggest problem is your flight being upgraded, may the Lord be with you. Seriously.
It was a birthday to outdo all birthdays. Hugh, sorry, but Benny beat you out. He made my trip.
Benny reminded me why I am calling my book Beauty Hunting. If he can find the beauty in his life, in a princess doll- surely we all can.
I am forever grateful to the people in my life. As my friend Angela says, deep humble bow to you all.
I have done love.
ps to send Benny a gift or card, mail to:
Benny Shirk. Dupont Hospital 1600 Rockland Rd.
Wilmington, DE 19803.