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My Weird Love-Letter to Theater (and Why We Need to Save It)

I think one of the insidious lessons about TV is the meta-lesson that you’re dumb. This is all you can do. This is easy, and you’re the sort of person who really just wants to sit in a chair and have it easy. When in fact there are parts of us, in a way, that are a lot more ambitious than that…I think what we need is seriously engaged art, that can teach us again that we’re smart. And that there’s stuff that TV and movies–although they’re great at certain things–cannot give us. But that we have to create the motivations for us to want to do the extra work, you know, to get these other kinds of art. And I think you can see it in the visual arts, I think you can see it in music…

These words are from David Foster Wallace. I wish I could claim them as my own because they are genius. But alas.

I read some DFW in college around the time I discovered that I liked my English minor classes way more than my Musical Theater major classes. It was an odd time.

I love musicals and acting and singing, and because I had a talent for it, I thought it was what I needed to do. Don’t waste a gift. That kind of thing.

It was the plan before I got sick with bone cancer, and so when I was well enough, I picked right back up where I was and kept going with it.

So in college, when I began enjoying something else more than musical theater, it was jarring. And I suppressed it.

Graduated. Moved to New York. Auditioned for a few years. And truly found myself looking around the audition holding rooms thinking I could be the most talented person in this room…but ALL of these people want it more than I do.

And that’s huge. That was a big, ugly realization to have. Because then I’m looking around the drug-deal-in-the-bathroom McDonalds next to the studios, wondering why I’m here, in this rich-man’s city when I could be literally anywhere else nursing the same carton of fries.

I realized I wasn’t cut out for the audition-world. And don’t get me wrong–the few professional jobs I worked, I loved every single second of it, and always felt fulfilled. But I could not handle the lows of being back in the city auditioning. Back to square one. Back to the restaurant biz.

Back to the stories about how certain projects are being cast based on Instagram following. Chicago is bringing in another Real Housewife…and what!? “Such and such regional house” hired only dancers and used pre-recorded ensemble voices? A casting director told their class that someone didn’t get a role because “they didn’t look good next to the vacation swing”?

What the f—–!? Why am I doing this?

And I totally fell out of love with theater.

Cue the pandemic.

Sitting on my thumbs in Syracuse for 6 months with my new boyfriend (who LOVES theater…we’ve had a few quarantine run-ins where he’d show me a video of so and so singing such and such song from “Insert Title Here the Musical” and I’d go…”babe. You know idgaf about this right?”).

And I’ll be honest, for a little while, when it was just like, a month hiatus…I didn’t feel bad about Broadway being shut down. I was kinda like…good. That world can be so toxic (not that I really know that much about it with my rousing 000000 Broadway credits), let everybody chill for a bit and think about other things besides whether their show will keep running another month, whether they got the callback, whether they should switch agents, whether they should take their seventh class with X casting director so they will maybe get cast in one of their projects.

Let everyone remember that there’s more out there and that THEY are more than their pirouette and 16 bar cut.

Well…I’m pretty sure with all the sadness and death and misdirection of the past 6 months…they remembered.

In June, I took a stroll through Times Square and felt ashamed of myself for ever thinking a Broadway shut-down was a good thing. Empty theaters, empty streets…once-bustling restaurants still with their St. Patty’s Day promos in the window. It was just a big empty hole of LOSS.

I didn’t want to be there.

When I read those words of DFW’s a few weeks ago, they kinda stuck with me, and I’ve thought of them every day since.

He was talking to David Lipsky (the book is called “Although of Course You End Up Becoming Yourself”), about how reading demands something of you. It demands your participation. Lots of TV and movies (especially now in our binge-watching culture, although he wouldn’t have known about that), they demand nothing of you. You just sit there and do nothing. You don’t have to live–the people on the screen do it for you.

And it made so much sense to me–I’ve had a lot of trouble sitting and watching TV for hours on end during this pandemic, not realizing that it had to do with my engagement with it.

Reading felt better. It was a two way street…I needed the author to tell the story…but he needed me to pick up the book and activate my brain to read the words.

The words implied things that I had to be smart enough to pick up on…and I was! I had to read between the lines for things…and I could! I had to interpret the messages and feel how the words on the page were hitting me…it was kinda like…kinda like….

Like DFW said, like music! Like visual art!

….Like theater!…

No, no, Jesse, we hate theater now. I ignored the thought and kept reading.

And then yesterday I came across this photo:

Me+female swings of Spring Awakening: Kayla Foster, Krista Pioppi, Krystina Alabado

I haven’t thought about or talked a lot about this experience since it happened. But during the height of Spring Awakening excitement, I was mid-chemo, listening to “Don’t Do Sadness/Blue Wind” to distract from the giant needle in my arm, or the upcoming MRI, or the painful throat sores and nausea.

I had seen the show on Broadway the summer before my diagnosis, and was immediately enthralled. I couldn’t wait to audition for it.

Auditioning became my Make-a-Wish. And at first it was almost a throw-away wish. Like “yeah, you know what Make-a-Wish Foundation? You wanna fix all my problems? Ya know what I really f—ing wanted before cancer ruined my life? To audition for this show! But that’ll never happen now, so go ahead, chew on that and then send me to Disney World.”

(I was not a pleasant patient…or person in general.)

But somehow…they did it.

They got the creative team of Spring Awkaknieng to invest a WHOLE afternoon into sitting and listening and working with a sad teenager who loved their show. For all they knew, I couldn’t sing at all, and just really f—-ing loved Spring Awakening. And they didn’t care.

I loved their show enough to WISH for it. They’d been told it was the soundtrack to my cancer journey–which it was. That it had a significant hand in getting me through to remission–which it did.

Michael Mayer, Kim Grigsby, and JoAnn M Hunter worked with me one on one. Coached my singing, my movement, my acting. Looked into my eyes and SAW me…treated me like a professional actor and not a sick kid with no eyebrows or eyelashes. When JoAnn asked to touch my head and I felt my wig slide…she didn’t wince or stop or treat me with kid gloves. She asked my family if we wanted to see Billy Elliot, and got us prime orchestra seats with souvenir programs.

“A few of the actors want to meet you after the show.”

Will Chase and Greg Jbara met my whole family–said they’d heard I had an amazing audition and just really wanted to meet me.

Greg Jbara talked to my dad like an old friend and I remember thinking this must be one of the first non-cancer related conversations my dad has had with someone new in a very long time.

My Make-a-Wish had nothing to do with Billy Elliot…they just wanted to meet someone impacted positively by theater. By what they do.

Carrie Gardner, the casting director, brought me to Magnolia Bakery the next day where I ate cupcakes with original Spring Awakening cast members John Gallagher, Jr., Gideon Glick, and Remy Zaken. They just chilled with me. Talked about Spring Awakening. Asked me things about ME. Non cancer-related things!

The Broadway show had closed, and the First National Tour was on its last leg, but when it came through Rochester, NY, I was invited to come and learn an ensemble track, the “chair of rock”. The show had audience seats on the stage, and a few ensemble singers were filtered in with those audience members.

I was terrified. I still had no hair, no eyelashes, no eyebrows. Everything about me was fake, and I remember always feeling like a party clown with my big wig and painted on brows.

I thought “these are real, paid actors. They are professionals. They are not going to want some charity case to come tread on their show and waste their time.”

The first few hours, I learned the show with the stage manager, and then the rest of the cast would be coming to rehearse with me.

While I was in the hair/make-up chair, Jake Epstein, who played Melchior, came up to introduce himself to me. I was so nervous that I called him Craig (the character he played on Degrassi) and he just laughed.

He would be the first of many friendly, excited introductions. Everyone was kind. Everyone was thoughtful. From the stage crew, to the orchestra, to the actors, to the hair/make up team, to the costume crew…

During every show, I was late on jumping up onto my chair during “Totally F—“. I didn’t have the nerve to tell anyone that my legs were not muscular enough for me to jump fast after being in bed for a year.

No one scolded me. The stage manager would just give me kind reminders.

It was a beautiful experience.

But once I got a year or so away from it, and got used to being a healthy person again…I honestly just thought of it as everyone being nice to a sick kid. You see interpretations of the Make-a-Wish kids on TV shows and in movies, and they’re always so pathetic and condescending…I kinda just labeled that experience in my brain “Jesse, the Charity Case.”

And yeah, that sounds terrible and cynical. But illness comes with all kinds of icky internal feelings that you can’t quite name, and then when you look at them again from a healthy perspective, it feels like people were only nice to you because they felt sorry for you.

But when I saw that picture the other day, it came to focus better. It lined up in my head with DFW’s quote.

I was a prime example of why the world needs theater. Why we need art, and music, and mediums that engage both parties involved.

The actors and team behind Spring Awakening gave the world their words and their show and their hearts, and I was an example and testament to the engagement of the other party. The reason we make art. I had taken in their show, and used it to survive, used it to find beauty, listened to its words when I needed to remember something bigger than a hospital room.

And that is why they were so kind to me. Their work requires our engagement, and our souls require theirs’.

We need theater. We need it to come back.

During my last show with Spring Awakening, I stood to sing “The Song of Purple Summer.” Tears were streaming down my face, and I caught the eyes of the singers on the other side of the stage. We were all crying.

We were all crying because we had participated in the full circle beauty of theater.

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Tidal Waves: A Brief New Moon Reflection

Last night I was thinking a lot about tidal waves, and how I am nothing to a tidal wave. I might as well be a tiny snail, but also I could be the strongest, tallest person in the world. I would still be nothing to a tidal wave.

Like Stephen Crane in The Open Boat said. Something about man, something something “nature does not regard him as important” something something something “would not maim the universe by disposing of him”.

Drops in the bucket. Unique fractals, sure, but all drops in the bucket that is never short of more drops.

And then I thought maybe it would be very poetic to die of “tidal wave.”

Surely nicer than “she died of cancer”, “she died of car crash”, she died of Covid 19,” “she died of broken heart,” “she died of organ failure.”

She died of tidal wave. Gravity and the Sun and the Moon conspired together to form a wave that would rip her from the shore, plunge her back into the earth, where maybe she will become a tiny sea star or a mollusk or a crab, or maybe she’ll wait a little while and just luxuriate being back in the bucket.

The shape of a tidal wave is like a ghost with his arms up chasing Scooby.

I should not like to meet a ghost.

Unless the ghost is my grandmother, and only if she is a happy ghost.

To clarify, a happy ghost would be a ghost that is just perhaps there to say “hi, hello, I see you trying down here…”

To further clarify, my grandmother who is deceased already. Not the currently living one.

And to further clarify, I should not like to meet a tidal wave either.

I know it’s very confusing.

I couldn’t sleep, and was thinking about fear and tidal waves and thought that maybe they were not so scary after all, that they might be a very meaningful way to go if you got to choose. Although, if you got to choose, it would not really be a tidal wave, because then it would be up to YOU and not a conspiracy from the moon.

To further further clarify, I should not like to die. Not yet. I am okay. I am great, although I am tired and have menstrual cramps and I wish a lot of things.

I guess what I mean to say is I am going to die someday and so are you, and perhaps “these uncertain times” are the first time you’ve truly had to face that inevitability, and I feel for you. It is a daunting realization to grapple with for the first time.

I remember my first time. Very bittersweet. Bitter because who wants to go?

And sweet because I came to realize that the person I’d miss the most is me.

But yes, tidal waves.

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Nurse Dee

I’ve been frustrated with myself for not knowing what to write during this time when all I have is time. The first thing I wrote was sad and dreary and maybe one day I’ll share it when times are better. But today I decided to share one of my favorite nurse stories from my illness, to celebrate the gown-and-masked heroes on the front lines!

My last chemotherapy was in late October 2009 and a week later—as was my custom—I landed back in the hospital with a fever.  The fevers guaranteed me at least three nights in the hospital, and I’d come to just plan on them as part of my treatment schedule.

I’d schlepped and slept through the two full days of my stay and was looking at what would hopefully be my VERY last night in the hospital for the ENTIRE TEN MONTH PROCESS!   

I’d been preparing for this day for weeks: crossing squares out on calendars, making a concerted effort to be nicer to everyone (even though my final treatment had begun with a botched port-access that left me stabbed and bleeding from the right boob—I clenched my teeth and powered through).  I came prepared for Ifosfamide with a tube of Icebreakers Ice Cube gum, because the first 10 minutes of each drip tasted like gasoline and pennies.

My only true “lash-out” had been at the hospital volunteer who’d woken me up three times on Halloween morning to ask me if I wanted to trick-or-treat around the hospital with the children.  In my defense, I was 18 GD years old, and had already politely declined TWICE.

But finally I’d landed at my last night in the hospital, and I’d been assigned one of my favorite nurses:  Nurse Detria!  She was the first nurse I remembered from my very first chemo—I’d woken up on Christmas morning to find her arranging presents for me and my sister at the bottom of the bed.  She was wearing a Barbie shirt, and my mom asked her if her name was Barbie.

“Nope.  I just like Barbie!”

Bitch,  I like Barbie, too!!!!  I was sold.

Having her as my last overnight nurse was like truly coming full circle.

I decided I wanted the night to go by as quickly and painlessly as possible, and what better way to do that than to just go the f**k to sleep!?

The only thing standing between me and a deep sleep was a cocktail of 6-8 pills.  They sat in a tiny paper cup at the foot of my bed.  My mom quietly read a book in the corner of the room, and Detria (Dee, as we’d called her) had checked my vitals just a few minutes ago and had gone to do her other busy Nurse things.

Left to my own devices, I decided that the best thing to do was to just throwback the entire cup of pills all at once.  It’d be like knocking back the whole pack of Tic-Tacs in one gulp…right?

I tossed back the cup of pills, took a big-ass swig of Snapple, and pressed the recline button on the bed.

I made it about three minutes before my body began to violently betray me.

And lemme tell you…those pills came back up practically whole.  My mom leapt up from her book, shocked and confused.  She lunged for the pink hospital tub on the counter and brought it over to the bed, doing the best the could to keep her face away from the action as she held it in front of my face.

It was a god.damn.mess.  My body tensed and contorted like the Exorcism of Emily Rose, and I wretched and cried and threw up and screamed “WHAT IS HAPPENING TO ME!?! WHY GOD???  WHY???” for at least fifteen minutes.

IT WASN’T SUPPOSED TO BE LIKE THIS! I kept thinking.  IT WASN’T SUPPOSED TO BE LIKE THIS!

At some point during the drama, Detria came in to assist and help get things settled and clean, and when the war was over, she sent my mom to the cafeteria for a break while I rested from my ordeal.

After twenty minutes or so, she came back in to check on me.  

“Feeling better?”

Half-asleep, eyes still shut, I muttered, “yes, a lot better.”

“Good!” Detria cheered, placing a new cup of pills in front of me.  “Then you can take these now.”  

I could hear the shuffle of the pills in the cup as they hit the bed-tray.  I opened my eyes just a sliver to check the level of seriousness in her face.  

She was serious.

“Okay,” I managed, grumpily. 

Detria smiled, heading back to the nurse’s stand. Before she closed my door, she peeked back in to order, “And PACE yourself, Miss.”

Over the next 30 minutes, I did pace myself.  I took my pills bit by bit, as “Failure to Launch” tortured me from the hospital TV above the bed.  Torture.

My pills all gone, I reclined the bed again, and nodded back off.  Finally, some peace.

I couldn’t have been asleep long before Detria came in to make sure I’d taken my pills.

“Good girl,” she said. 

I said nothing, just lay on my back, arm bent above my head martyr-style, eyes closed.  “You get some rest now,” she continued.  And then, “you brushed your teeth, right?”

I smiled, sheepishly.  A definite no.

“You just threw your guts up and ya aren’t gonna even brush your teeth?  Girl, where is your toothbrush, I don’t see it in this bathroom.”

….


“Jesse.  Where is it.”

“…it’s still packed…”

Her eyes got all squinty.

“Do you mean to tell me you’ve been here three days and haven’t brushed your teeth?”

I smiled again.

“Get up.  Now.  And tell me where the toothbrush is.”

Sighing my biggest, most dramatic sigh possible, I pushed myself up.  I reached over to unplug my pump, hoping she saw how far away from me it was, and how painstakingly difficult it was to reach it.  

I stood in front of the bed and she handed me the baggy with my toothbrush and toothpaste.  

“Alright.  Now roll yourself into that bathroom and brush your teeth, Missy.  I’m going to check on something but I’m coming back and I’m gonna smell your breath and if it still smells like puke and pills I’m not gonna be happy.”

I did as I was told, as quickly as possible, and then rolled myself back to the bed.  

Once I’d plugged myself back in and gotten comfortable, Detria was back.

As promised, she sniffed my breath, and I passed inspection.

“Alright,” she conceded.  “And I’m sure you did your Peridex rinse, too.”

Ahh, Peridex.  One of my many nemeses.  A very powerful, bacteria-killing mouthwash used to prevent mouth sores after chemo, I had rejected Peridex from day one because “it tastes like as***le.”

I don’t know why I cannot tell a lie.  And I don’t know what possessed me to respond so honestly, but I hated Peridex so much, I suppose I just couldn’t hold back.

“Dee.  I never do my Peridex rinse.”

Dee’s eyebrows shot high up on her forehead.

“I don’t have it here!  I don’t even take it with me, Dee!”  I was half-laughing, knowing there was no Peridex to be found in this room.

“Well…aren’t you lucky to be here in the hospital where I can procure some for you!”

“…seriously?”  I sassed, in my best sassy teenager sass.

“Unplug that pump, Miss, and I’ll meet you back in the bathroom.”  

I groaned and pouted, desperate for sleep.   “Can’t I just do the rinse from bed and spit it in a cup?”

She had to see how tired I was…how desperate I was to not be awake…how exhausted my body was from my violent pill battle…right?

“Your legs work just fine.”

Detria came back with the Peridex, and fluffed my pillow while I rinsed.  When I finished, she helped me back into bed, and plugged in my pump for me so I didn’t have to reach so far.

“Thank you, Dee,”  I said.  My thanks surprised even me.  She had driven me crazy for the last hour, forced me to care for myself, and take my pills and brush my teeth and do my nasty rinse and walk on my weak legs.  But on this night, this last night in the hospital, it was clearer than ever: she didn’t do all these things because it was her job.  I mean, sure, it was.  

But it was obvious that more than anything she did it out of genuine care and love.  All of them did, these nurses, this family, or else why would they do it?  Why would they subject themselves to the sadness?  To the bald kids crying and the babies dying, and the cranky teenagers swearing and lashing out?

Nurse Detria pulled the covers up over my shoulders and gave me a kiss on the top of the head.  

“Goodnight, baby.”

PS: THANK YOU TO ALL MY AMAZING NURSES FROM YESTER-YEAR: Brooke, Brian, Melissa, Maria, Deb, Sandy, Dawn, Lilia, Jeanette, Sharon, Anne, Tara, Rachel, Aubrey, and EVERYONE I MISSED ❤

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Dilemma

This post will not be liked or enjoyed.

And thats ok.  This is for ME to work through my thoughts.

In 2019 many of the women in my family underwent genetic testing to find out if they had genes that put them at risk to cancer, namely breast cancer.

A few of them found out that yes, they did test positive for some of these genes.  One of them found out that not only did they possess one of these genes, but there was already a small cancer that needed to be addressed.

Of course…this sent MY doctors brains on fire.  My OBGYN wanted to pull me off birth control immediately.  There was talk of sending me to a gene specialist to be tested for several genes and to discuss my options.  

Ultimately I decided that everyone could calm the fuck down until I had my yearly visit with my oncologist.

Which I did this week. 

While I was expecting talk of precautionary measures and what to be on the look out for, I was not prepared for what I was told:

“Due to the genes that are clearly present in your family, and information we’ve discovered in the past year about the long term effects of doxorubicin (—a chemotherapy drug I was blasted with for 10 months), you are at a higher risk for developing breast cancer than we originally thought.  It’s probably best that you begin regular mammograms and chest MRIs within the next two months.”

Well damn. 

In the office, I was shockingly calm and level headed.  I asked good questions.  Proactive questions.  Questions that smart patients looking out for their good health would ask.  I stress this to you because I don’t want the take away from this post to be “Jesse wants to die.”

Jesse doesn’t want to die.

Jesse 100% does not want to die.

But Jesse doesn’t know if she necessarily wants to spend her time “preparing” for an illness that may or may not come, in order to prolong her life.

I have never, ever been able to imagine myself as an old woman.  And I know that a lot of people would probably say they can’t picture themselves being old…but I mean more by that.  

I do not want to live to be 100 years old.

I don’t really want to live to be 80 years old.

This is an unpopular opinion that I have, and most people find it sad.  I, however, do not find it sad.  

I am not married.  I do not have children (and for all intents and purposes, will likely not have them, thanks to chemotherapy).  I have undergone a giant battle already in my lifetime, one that left me already chronically ill.  I don’t think it should be very surprising that I might not want to live to be very old because I would likely be a very sick old person.

So when you tell me I should spend MORE time being tested, MORE time under MRI scans, expose my already dying kidneys to MORE MRI contrast…I cannot help but ask…for what?

“To prolong your life!!!! Make it the longest is can be!”

I ask you again…for what?

“Jesse…this sounds like depression.  You’re depressed.”

I mean, I personally think “I want to die, kill me now” sounds like depression.  

But okay maybe…it’s a lot to chew on.  And does it make me sad to have to do this chewing? 

Yes.  Yes it does.  Sad.  Depression.  I see it.

But do I think I should automatically be labeled depressed because I don’t see the same value in all these “precautionary measures” to prolong my life?  

Again.  No children, not married, already fought cancer and not in 100% good health…hmmm?

“But your family and friends!  Your family and friends love you!”

And I love them too, and they have me.   I’m not suicidal.  I don’t WANT to die.  I’m not actively looking for ways to kill myself faster.  I’m not a smoker, I’m not an alcoholic, I don’t eat Big Macs for every meal.  I do yoga, I meditate, I live my life…

I just don’t want to spend precious time fretting over procedures and chilling in doctors waiting rooms to “maybe prevent breast cancer.”

Cuz guess what?  My body, since cancer, is a boat with several leaks.  The leaks are pretty well patched.  But as soon as you think you’ve patched one up all nice and sturdy, another one might burst.

So yeah, say we spend all that time fretting over breast cancer.  We get a mammogram and chest MRI every year starting now, at age 28.  We get out ahead of it!  We test those suckers over and over again!  And maybe every other mammogram/MRI yields a false positive result, and so we put me through several biopsies that turn out to be a benign ball of tissue.  

And one of those times…we find breast cancer in its early stages and we TREAT IT!!!!

And a week later…my kidneys fail.

Let me break it down like this.

Mid-way through my treatment, my mother took me to a fertility specialist in Syracuse.  When I was first diagnosed, the cancer was spreading too quickly to do anything preventative of fertility.  We could freeze eggs, a process that takes a few weeks…but in those few weeks, the cancer would likely spread to my bone marrow, decreasing my likelihood of survivorship significantly.  

Being 17, I didn’t really give a flying fuck about having kids.

And to be honest, I still don’t really give a flying fuck.

But my mother wanted to make sure she fought for me, because she was a very thorough caregiver.  I think anyone fighting cancer would have a higher survival rate with my mother as their caregiver.  

So she brought me to a fertility specialist at one point mid-treatment just to ask questions and see about possibilities after my treatment.

The manner in which I was spoken to, the pity in the eyes of EVERYONE in that building, and the treatment options they presented to me with the promise of “maybe” saving some semblance of fertility…

I stormed out of the building mid appointment. 

When my mother found me outside, I looked her in the eye and said that if I beat this disease, I would never, ever, spend another moment in a place like that.  I would never, ever, expose myself to extensive “maybe this will help” treatments and tests.  

And I would never waste precious moments surrounded by people who looked at me with such pity.

I can honestly say at this point, I don’t know what I will do.  Women are supposed to have mammograms beginning at age 40.  And at age 40, I was prepared to do so.  As I’ve mentioned, I am not actively trying to die.

I just don’t know that I’m actively trying to prolong a life that maybe was not meant to be as long as others by spending another large percentage of my time in doctors offices and MRI machines.

The jury is out.

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The Blame

A few posts back I wrote about not being able to remember myself before having had cancer.  About how my old bedroom was a mausoleum to who I was pre-illness, and sometimes I just wish I could live one day without the weight of cancer survivorship pressing somewhere on my soul.

Nowadays, I don’t really think about who I was before.  I’ve matured enough to know that that’s wasted energy—that the only way to go is forward.  For the most part, I am a mentally happy and stable person.  

However, as I approach another birthday in roughly a month, I find myself reflecting once again on how I have yet to be able to pinpoint what it is I want to be doing with my life.  I have many interests and avenues I feel pulled toward—but a constant hesitance at pulling the trigger and whole-heartedly committing to something.  And I know there’s some sort of mental roadblock holding me back.

The truth is, more therapy would probably do me a world of good in fixing this.  But my last therapist kind of scared me…and I haven’t yet been brave enough to go back.

She began pushing me toward a subject that I refused to acknowledge as valid: that there may be something—however big or small—from BEFORE my cancer diagnosis that continues to hinder me to this day.  

Well…I hadn’t considered this—wouldn’t consider this.  Since December 2008, I have had the PERFECT excuse for depression, anxiety, hardship…anything: “Well I had cancer.”  

I could say that and I didn’t need to say anymore.  It was the perfect excuse and—don’t get me wrong—an ACCURATE excuse.  I still have the recurring high school nightmares where they tell me I have to go back and finish my last few classes because I didn’t attend enough school days in my last semester—a dream just last night that my parents were tricking me into the car to go get dialysis because my kidneys were failing.  

Last month I saw an ad for the annual Young Adult Cancer Survivor Conference held in Colorado.  I attended one year, when they held it in Las Vegas, and it was a very good thing for me.  I priced out how much it would cost for me to attend this year, and actually approached my parents with the monetary figure and asked that for my birthday, they maybe cover half of the cost for me.   

Well of course, life happened, and I found myself needing to prep for other expenses, and so I let the idea of attending again fall by the wayside for this year.  What a shame,  I thought.  It could’ve done me so much good!

And then I thought…would it really?  

I mean, there’s no doubt in my mind that being with a group of cancer survivors roughly my age, sharing and discussing our experiences and struggles would be SO therapeutic and a very positive thing.  But I started thinking…would it really, truly help me launch forward in my life at this point?  Is cancer still really to blame for my mental and emotional hang-ups?

And that’s where I’m dwelling now.  Because it’s hard to tell without being able to remember what it was like to not have had cancer.  To not be stuck with needles every day for a year.  To not watch fellow patients—children—die left and right.  To not watch the rest of my family struggle at my expense, to not become a toxic waste dump of chemicals with big bald head. 

To not feel like an undeserving survivor, because I was so cruel to those around me. 

The easiest thing is to blame any hardship I have in life on those things.  On those experiences: “Well lately I’ve been struggling with XYZ, and that’s probably because when I was in the hospital in ’09 I talked to this girl in the hospital and the next day she died and…blah blah blah.”

The difference between me now and me a year ago is that a year ago, I just wanted to feel better…to feel good.

Now, I want to be better and be good.  And…terrifyingly…that involves acknowledging that there was something a little bit broken about me before I became dangerously ill.  

And no one wants to admit that.  

Regardless of how often we acknowledge the stigma of depression  and anxiety…there IS still a stigma.  I’ve just been able to hide behind my cancer diagnosis for 10 years.  But the truth is: Even if I had not had cancer in ’08-’09, I would probably still struggle from depression.  

I would definitely still struggle from anxiety, given my OCD.  But it’s really hard to admit that my emotional lows are probably just emotional lows…not cancer-related lows.

And I know what you must be thinking: if you’d just nut-up and go back to therapy you could get some solid answers.

But it’s not as simple as that for me.  Because it IS impossible to go to therapy WITHOUT talking about the cancer. Because even if it isn’t the root of my mental hang-ups, it is a HUGE component and contribution…

I mean, one could argue that the fact alone that I’ve used it as my excuse for so long needs working out and unpacking.

There’s just so f***ing much to unpack.  

I will turn 29 on March 25.  That means for roughly 11.5 years (138 months…4,140 days) I have blamed all of my mental and emotional issues on a traumatic experience.  (A traumatic experience that—no doubt—contributed to those mental and emotional issues).

But my previous therapist is correct: there are things from before December 23rd, 2008, that are the root cause of these issues.  The bulk.  The true blame.

Another thing I wrote in previous blogs is that I have always felt like there was something intrinsically different about me, and that when I was diagnosed with cancer, it made sense to me.  

I have to decide if I’m brave enough to find out why.  

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Breaking News: Being “Offbeat” Officially Back on Beat

Happy New Year!  I haven’t posted anything new in 2020—I did a tacky thing where I reshared an old post because I’m lazy—so here’s a little something to make up for it.

I’ve been trying to like…brainstorm where I wanna take this blog and how I can commit to writing more content (ooooh “content” 💁🏻‍♀️) that’s not basically just me rambling about my teeth brushing habits, crying on public transit, and then the occasional golden nugget of wisdom from the cancer survivor-drawer.  

But it’s hard for me to keep up with this blog because all I ever truly want to write about are mundane, day-to-day things. 

Like I wanted to write about how last week the muscle under my left boob was really hurting and is it really a muscle at all?  Let’s explore this, is there something sinister under there?  It really hurts to sneeze and it’s sneezing season!

But that’s really boring.  I can’t write a whole post about that (but lets be real I totally could). 

So I got to thinking about all the feedback I’ve gotten on my blog over the years and I thought of something an old high school friend acquaintance said to me once when she cornered me buying ditalini pasta at Tops Friendly Markets.  She was like “OMG I love your writing.  It’s so offbeat.”

“NO YOU’RE OFFBEAT,  B****.”

But I didn’t say that, I just said what you’re supposed to say back like “oh yeah thanks for reading, and yeah, my writing is offbeat you’re so right, you totally get me, good luck with your screaming 2 year-old.”

And then I thought of something a guy I was “dating” said once: “you write exactly how you speak.”  So THEN I connected the two and was like…okay is my writing offbeat…or am *I* offbeat?  Am I f***ing OFFbeat?

Like I know I’m strange and I got some questionable OCD ticks going on but like…offbeat?  Like awkward?

AM I MAKING YOU UNCOMFORTABLE, READER, IS THIS AWKWARD FOR YOU?

Cuz lemme tell ya.  I’m not trying to be offbeat.  To me, offbeat is a bit overdone at this point.  It’s been played up so much…Kimmy Schmitt chick, Aubrey Plaza, Zooey Deschanel in general like…it’s a brand.

WHICH REMINDED ME OF SOMETHING ELSE someone said to me once about something I posted. 

“Very on-brand.”

On brand!?!?  

I, Jesse No-One-At-All, have a BRAND!? What’s my brand?!? I want to be ON BRAND in 2020!  Brand brand brand brand brand!!!!!

And then I thought…maybe mundanity IS my brand.  

I HAVE to write about my under boob muscle.  And my teeth brushing habits.  And how I cried today on the 1 train because it’s the first day of my period and I have no idea what I’m doing ever.  

And guys, I got so excited thinking about all the mundane blog posts I could write like…my god, check out this list of “on-brand” ideas:

  • I feel genuine guilt at commanding Alexa to do something—I know she’s not real but I’m always thinking that the universe and maybe like…the spirit world (?) are watching me be on this powertrip and my grandma is thinking “please and thank you’s, Jesse, don’t be an a**hole”  
  • I carry a clear purse now because I want to be able to see inside my bag at all times so I can make sure bed bugs don’t sneak in my purse from someone on the train or that lady from Chipotle that wears a neck pillow all the time.  I think it’s genius…some seem to think it’s a little crazy—but you say tomato, I say YOU’RE JEALOUS.
  • Are we still picking up heads up pennies?????  What’s the rule now?  If it’s tails up do you fix it so someone else can find it heads up and so then you both get good luck because of the good karma you did?  I’ve been trying that lately as long as the penny doesn’t look too germy.
  • I think it’s important that everyone watch Criminal Minds so they can make a plan for how they’d avoid all of the horrifying things that could potentially happen to them.  Like I’ve got a fool-proof way to avoid getting kidnapped by the guy who paralyzes you and then force feeds you someone else’s fingers, and maybe, just maybe it’s time for me to share that with the world…
  • My f***ing slippers are never right next to me when I need to slip them on and so WHAT EVEN GOOD ARE THEY? If my bare feet have to touch the floor while I LOOK for my slippers then why do I even have them at all YOU’RE USELESS, SLIPPERS JUST GET OUTTA TOWN!

I think maybe this could go somewhere.  Maybe I write these posts and maybe they’re not all genius—but they’re me.  They’re on brand.  

And then maybe I’ll have a day or two where I’m ready to talk about my feelings and it’s cheaper to just write about them than go back to therapy.  

  • Example feeling/thought:  If you never do anything incredible or extraordinary or even mildly impressive in your life but you always make enough to pay the bills, travel a little, and spend time with family/friends…will you look back in the end and still regret not having done anything extraordinary?  I mean, I know we’re all supposed to think NO, OUR HAPPINESS IS ALL THAT MATTERS.  And LOVE YOURSELF no matter what and yeah yeah yeah…but is that truly all? Will it be enough…? I don’t know!!!

This is gonna be a good year for blogging, I can feel it. It’s just the beginning.  You’re gonna love it, wanna know why?

Because you’re just as f***ing mundane as I am.  

And you know what ‘mundane’ truly is?  

Real.  NOT offbeat.  Just real.

Stay tuned…

Just kidding I can’t in good conscience end a blog post with ‘stay tuned’.  Instead here’s the lyric to the song I’m currently listening to:

“You think you got it.  Oh…you think you got it.  But got it just don’t get it when there’s nothing at all…” 

WOW couldn’t have said it better myself 👏🏻 👏🏻 👏🏻 

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The Art of Crying in Public

If you’ve never cried in public then congratu-f**king-lations on STIFLING YOUR EMOTIONS and manifesting them internally until they turn into cancer.

Actually I’ve been crying in public since kindergarten when I was telling everyone about my new Lisa Frank stencils and Jaron told me to “SHUT UP, JESSE ROSE*” …and look how that turned out.

(*Yes, I was called Jesse Rose until 1st grade)

Although that cancer could’ve manifested from many things such as incessant Diet Coke drinking or the fact that in junior high I used to be home alone after school and would mix peanut butter in a bowl with chocolate chips and cool whip and eat it with my fingers while simultaneously performing the entire first 40 minutes of Annie (including the Overture) in my kitchen, complete with hard knock life sweeping and bucket slamming. None of that can be healthy.

Sorry I got lost.

Regroup.

A couple days ago I was pondering on the train. You may recall from the last installment of this rousing blog that I like to ponder things while being transported from one place to another. Cars are for pondering cliches.

Trains are for troubles. Alliteration is very important to me.

So there I was pondering my troubles, really really allowing myself to wallow for a bit. This is called “rumination” which I learned from accidentally listening to the same chapter of ‘The Power of Now’ over and over again on the train before I finally thought “hmm this sounds familiar” and realized it’s because the tracks are on “repeat” and maybe I should dedicate train-time solely to troubles-pondering.

I’m so sorry, lost again.

So anyway. I was pondering my troubles, which are very VERY many being a white girl from a middle-class background with a degree, a stable job, and a loving family. But we all have shitty weeks and last week was just rough for me on many fronts, and I really just wanted to RUMINATE.

And so I’m ruminating and ruminating and ruminating and then “When the Party’s Over” came on shuffle by Billie Eilish, and if you’ve never heard that song before, it’s a really really sad song that makes you feel like there’s no hope and you should just curl up in the fetal position and RUE THE DAY your sister ever taught you that Billie Eilish was not the same thing as Billy Eichner.

And of course…I was doing just the right amount of pondering that the combination of my troubles AND this really really sad song was dangerously close to putting me over the edge…

When it comes to public tears, there’s always a moment RIGHT before the point of no return where you are faced with a choice: you could dial it back and NOT cry in public…or you could just release the beast and let it happen. And in that crucial moment, I contemplated simply changing the song…seems pretty simple! I got plenty of good jams to listen to…but I didn’t.

I decided that this day was as good a day as any for a good ole public cry. Call me dramatic—but every once in a while, I want to remind EVERYONE around me that not only am I a human being with emotions, but I ALSO don’t give a f**k about your comfort. There is a brevity in not caring if you see me cry. It can be very empowering.

It CAN be. But it has to be done very carefully.

First of all, it can never get out of control. It needs to be graceful. It requires a lot of long, carefully planned blinks.

You close your eyes lightly at first. Then you slowly squeeze your eyelids tighter and tighter. It’s almost like you squeeze the tears out with your eyes closed, and then lightly open them and allow the water to trickle down your face. It looks, from the outside…like you are fighting back the tears…when in reality, you are just summoning them to do your bidding.

Then, you stare straight ahead for fifteen Mississippis.

FIFTEEN. FULL. MISSISSIPPIS. Even if what is straight ahead of you is the open fly of a Canadian tourist in cargo shorts. Just keep staring ahead…because if you decide to look down, you might find that he is also wearing MAN FLOPS…and if you look UP???

Well looking up would cause public-crying eye-contact.

And that is a no no.

That I had to learn the hard way. Once when I was having a “got-all-the-way-home-and-realized-I-left-my-housekeys-at-Wendys-while-getting-a-frosty-and-also-I’m-on-my-period-and-now-I’m-on-my-way-back-to-Wendy’s” cry, I accidentally made eye contact with a guy.

And…

He was hot.

And it was embarrassing not just because he was attractive and I’d been wearing a lot of mascara that day…but also because he FELT COMPELLED TO SAY SOMETHING.

“err….it’s gonna be okay,” he muttered, uncomfortably, as he exited the train.

“I LOVE YOU…” I called back. (Jk)

NEEDLESS TO SAY, YOU NEVER WANT TO COMPEL ANYONE TO SAY ANYTHING. THIS IS MEANT TO BE A VERY VERY PRIVATE PUBLIC ACT.

So anyway, you repeat a couple of the long, graceful blinks and tear trickling, stare ahead a little bit…and then when you’ve decided you’ve drawn enough attention but not too much…you take a deep breath and think about how you are going to make yourself feel better.

During the Eilish incident, I thought about how as soon as I got off the train I’d be at Maison Harlem and I could order roasted chicken and mashed potatoes and watch ‘Dance Moms’ on my iPhone LIKE EVERYONE DOES at a bar!

The thought made me so happy that even the creepy cat-caller outside the train station who said “aww nooo smile?” couldn’t bring me down.

Guess what? I DID smile at him. But not because he told me to…because I was thinking “ROASTED HALF-CHICKEN MOTHERF**KER.”

And as I devoured that chicken and mashed potatoes, I made a plan to make myself feel even BETTER with a BACKSTREET BOYS JOG later in the evening!

(A Backstreet Boys jog is when you jog to “Shape of My Heart” on repeat and sometimes a bunch of guys playing basketball nearby hear you singing along louder than you realized because of your earbuds, and they try to join in by singing the chorus of “I Want it That Way”…and you think “okay guys, not the right song, but I’m proud of your inner Backstreet Boy!”)

>>BTW saw the Backstreet Boys at Barclays Center last month, and they are still amazing, and AJ can still show me the shape of his heart any way any DAY!<<

Anyway.

You know my actor friend once told me she hates crying in public because it’s so basic? And let me tell you—NYC actors cry in public A LOT. Because we JUST SO HAPPENED to find out AT STARBUCKS that we woke up at 4am and waited six hours for nothing because they’ve decided not to see anyone under 5’3 and we’re 5’2 and now it’s too late to go home. ORRR ORRR we don’t know how to answer the “are you a dancer?” question because at a dancer call we look like a non-dancer, but at a non-dancer call we look like a dancer so OMG WHAT THE F**K DO YOU PEOPLE WANT FROM ME? SWEET JESUS!

LOST. REGROUPING. WE CAN DO THIS WE ARE ALMOST DONE!

So anyway, my actor friend told me that she hates crying in public because it’s “so basic.”

….

….

….

And my question is…basically what?

What is basic? What is a “basic bitch”? I’m basic because I was happy that Starbucks did pumpkin spice lattes early? I’m basic because I listen to trashy pop music and like scented candles? I’m basic because I like watching ‘Bachelor in Paradise’, and still support Blake Horstmann and his search for love even though he got a bad rep for trying to live his best life as a single man at a country music festival?

I’m basic because I WOULD actually go on ‘The Bachelor’ if I knew beforehand who the Bachelor was? I’m basic because I’m afraid I’d get sent home on the first night because “that Jesse girl was cute but I feel like she was more interested in eating the snacks?”

I’m basic because in this theoretical world where I went on “The Bachelor”, ABC put “Girl Who Ate All the Snacks” under my name at the reunion show?

I’m basic because I’m drinking happy hour champagne while I write this?

I’m basic because I have the STRENGTH to cry in public?

Guess what? I’m gonna tell you a secret. Society loooooooooves to rag on the “basic bitches.”

But “basic”….is just a cover for “REAL AF.”

The BASIC girls are the realest.

The BASIC girls are the hustlers.

The BASIC girls are the ones who will look back on the most FULL lives.

The BASIC girls just keep writing and writing and writing, hoping at the end of it you come away with a very, very REAL message:

I “BASIC”ALLY DON’T CARE WHAT YOU THINK OF ME ALL THAT MUCH.

I will continue to cry in public as I see fit. I will continue to write really weird shit that you NEVER SHARE ON FACEBOOK TO HELP A GIRL OUT…but that YOU will continue to read!

So to all my basic girls…just remember the wise words of the bestest most basic-est Louisiana woman we all know and love:

Love me

Hate me

Say what you want about me

But all of the boys

AND all of the girls…

Are begging to If U Seek Amy.”


FIN

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It Kinda Sounds Like I Might Be Strange

The other day I was walking somewhere when all of a sudden I realized I was thirteen blocks further away from where I thought I was because “math” and so I hailed a cab that was stopped at a light and I was like ‘can you just drop me at 40th because I’m lazy’ and he was like “sure it’s OK” (when run-on sentences are a technique of your prose it’s OK).

So there I am in this cab just riding thirteen blocks because I’m a POS, and I’m just sitting there and I thought to myself “My God, Jesse…you are so cool.  I love you.” And it was a very, very genuine moment where I really did think I was very very cool in my lil cab being all New York, just like little 12-year old Jesse would have wanted. 

And then, of course, immediately I’m like “whoa whoa whoa you are NOT allowed to think you’re cool that is SELFISH.”  And so then I pondered briefly if I should ask the cabby if HE thought I was cool but then I was like “no…not only are you carrying a giant purse AND wearing a tiny backpack…you are weilding one of those opens-inside-out fancy pants umbrellas with f****n’ Starry Night Van Gogh on it. This cabby thinks you’re a priss and NOTTTTT cool for making him drive you thirteen blocks!”

And then I thought…ya know?  What even IS cool anyway? And when did I first start questioning my coolness?  (This really happened.  I really do ponder cliches in cars quite often).  

And I thought all the way back to Matilda Who Told Such Dreadful Lies by Hilaire Belloc, which was my favorite book as a kid until I realized that other children didn’t also love this hilarious tale of a girl who told so many lies that no one listened when her house was on fire and she was calling out “FIRE FIRE FIRE HELP ME PLEASE” and so she burned alive.  My favorite part of the book went a little something like this: 

You should have heard her Scream and Bawl,

And throw the window up and call

To People passing in the Street —

(The rapidly increasing Heat

Encouraging her to obtain

Their confidence) — but all in vain!

For every time she shouted ‘Fire!’

They only answered ‘Little Liar!’

THIS.

BOOK.

WAS.

BOMB DOT COM and I couldn’t wait to bring it in to school when it was my turn to share my favorite book…but the teacher was all

 “ummm where did you get this book.”  

And I said

 “ummm my AUNT who works for the LIBRARY OF CONGRESS!!!!!”

She didn’t care about my aunt who worked for the Library of Congress.  She said the book was too disturbing. And I said

 “Uhh, I think everybody already knows this story…”

And she said…

”No Jesse.  I really don’t think they do.”

As a matter of fact, everyone DID know this story…as the boy who cried wolf.  But as I soon learned in the cafeteria when I told my friends my book had been rejected, NONE of them had heard the cute story about Matilda who burns alive in her house while her family is at the theatre.

And it was at this moment that I took pause and said WAIT A MINUTE WAIT A MINUTE WAIT A MINUTE…am I strange?  Cause it kinda sounds like I might be strange.

So in case I lost you somewhere in that anecdote, the story about ‘Matilda who told such dreadful lies it made one gasp and stretch one’s eyes’ did NOT mess me up.  

Learning I was the ONLY ONE who loved this story messed me up.

If it wasn’t made abundantly clear by the fact that I liked such a f***ed up book that was given to me by my aunt who worked for the Library of Congress (JEAN), I was, and am strange.

And I don’t say this in a “Zooey Deschanel quirky girl, ironic shrug” kind of way.  No offense to that. That’s it’s own thing. She’s great. It’s great.

But I am just plain old strange. And I fought it for a long time, especially in my twenties.

In fact I think I spent most of my twenties in denial about it.  I tried for years to curb the things about me that are strange:

-I tried to post on Instagram what I thought you were supposed to post on Instagram, but it all felt so forced and dumb that I ultimately deleted it for six months and want to delete it again.  

-I tried to do the things in NYC that people think are fun like brunch, and drinking til you puke and black out, but I always end up back in my room in a kimono watching Serial Killer documentaries, drinking Diet Coke and diffusing peppermint oil.

-I tried to overcome my irrational fear of brushing my teeth in the same bathroom I poop in, but some days I’m just not strong enough and I have to brush my teeth when I get to work.

-I tried to keep that toothbrush/pooping thing a secret and succeeded until now.

-I stayed two years too long in a relationship with someone I knew was not my person because it seemed easier to just follow the “engaged by 25 married by 27” route the majority of friends were on.

-I stifled and ignored my OCD so badly it burst, and I lost two friends in the process. 

-I tried to talk less about cancer because I didn’t want to make people feel sad.

-I tried to hate a friend who actually faked cancer for years–tried hard to feel the hatred that everyone else involved was feeling toward her for doing such a terrible thing…but just couldn’t muster a hatred I didn’t feel. And she remains my close friend to this day.

-I tried to talk less about cancer because I didn’t want to make people feel sad.

-I TRIED TO TALK LESS ABOUT CANCER BECAUSE I DIDN’T WANT TO MAKE PEOPLE FEEL SAD.

I MADE APOLOGIES FOR MY HAVING CANCER BECAUSE I DIDN’T WANT TO MAKE YOU SAD.

Tsk tsk tsk.  Jesse, Jesse, Jesse.

But all those things…I tried and failed.  I’m just strange, and lately I’ve been thinking a lot about one of the strangest things that ever happened to me.

The day I found out about my tumor I had an incredible moment of clarity that I’ve never been able to forget.  I only ever shared it once, doing EMDR therapy for PTSD. Because before now, I thought it was crazy. Way too strange to be shared.  

But that day back in ‘08, we were waiting–had been waiting for hours, to see somebody. Outside the office building in the middle of a friggin Nor’easter, my dad had taken me to get some air.  He was trying to keep me calm, telling me we didn’t know anything for sure yet. Maybe whatever they saw on the MRI would be benign, maybe it was not what we were all hoping it wasn’t.  

He pulled me into a big hug and I buried my face in his chest…and in that moment, seemingly out of nowhere, this warmth came over me and I knew beyond a shadow of a doubt that I did, indeed, have cancer.  It wasn’t just “a gut feeling” or “something I really felt in my heart.” It was like the universe was gifting me this knowledge, whether I wanted it or not.

And it made me smile.  I smiled there, in my dad’s arms in the snowstorm.  He couldn’t see me, but he’ll know now. I was smiling.  Because for that very brief moment it all made sense: This was strange.  I was strange.  Everything, everything in my life so far had lead me to this moment:  this was supposed to happen to me, and like it or not, this was part of the path. 

And I smiled.  This strange phenomenon was powerful enough to make me smile in the middle of a f*****g tragedy.  

And I say that with no sarcasm or dark humor or irony.  I guess I would say I consider it the closest I’ve ever been to feeling a psychic phenomenon.  

And just as quickly as it came…it passed.  Because we all know the story from there…I turn into an adolescent cancer monster. But I thought of that day all the time–that feeling I had.  I just could never quite harness it, and use it to help me gain perspective.  

Today I can harness it.

You hear people say all the time that you have to love yourself if you’re ever going to love somebody else.  You have to take care of yourself before you can take care of somebody else. I’ve pondered that cliche many times, in cars, as I’ve been known to do.   It never rang true for me. Up until this year, I rejected it because I was SURE I’d never love myself but I definitey didn’t plan on being alone for the rest of my life.

But this year I’ve been changing…mat-oo-ring, if you will. Because now I have a different take.  Now I have two issues with it, the main one being that you can’t view part one as a MEANS to part two.  Self love should be about loving yourself, period. NOT as a stepping stone to loving someone else…even if it DOES end up being that stepping stone.

I took a class a few weeks ago downtown at The Open Center and the teacher said something like ‘if everyone could really truly love themselves, they wouldn’t need love from others.  Any love we got from others would be a bonus.’ I’m paraphrasing. But you get the gist.

That’s what I want.  To love myself with the idea that if friends and family come and go…if I never get married…if I never have children…that I have enough love and respect for myself to still have a happy life.  

My other problem with that cliche is that as much as we throw around “self-love’ and post memes about self-confidence and being yourself and yada yada yada…we still live in a world where EXPRESSING confidence in yourself puts you at risk of being labeled “self-centered” or “selfish.”  And I know it’s a very very fine line between the two…but still…I know I should be able to think I’m cool in a cab without stopping myself and feeling guilty…RIGHT!?

Regardless, I have way more appreciation and love for my strangeness now.  And when I have my days of doubt…of which I still have many (don’t think this one little sermon means I’m traipsing around like Mary Sunshine in a crown of daisies all the time) I actually find comfort in thinking back to that one small moment on what was probably the worst day of my life…where some strange force in the universe told me I was precisely where I was supposed to be and it made me smile.  I remember that if this universe has enough humor in it’s ether to make me smile on the worst day of life, I can get through today.

I think maybe I’m not strange.  I’m just mad cool.  

And so is Matilda…may she rest in peace.

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I Sang It to the Wall

The dream has many versions and elements that interchange themselves over time, but lately the dream has been roughly this:

I inevitably get a letter from the keeper of high school diplomas, whomever that may be, and he tells me that because I missed so much school during my senior year, they have to revoke my diploma, and I’ll have to go back to high school and take half a year of classes in order to get it back. 

So I do.  I go to school and I can’t remember my locker combination, so I have to make my way to the front office, and as I do, I pass swarms of students and realize I don’t know any of them.  All my friends are obviously gone.  At the front office they give me my schedule—I never end up finding out my locker combination.  Depending on the version, I either begin in band, or I begin in chorus.  The iteration that I’ve been having lately starts me out in chorus, where the chorus teacher tells me what the musical is for that year, and that he’s actually really happy I’m back so that I can be in it.

I then have this inner struggle with myself over both wanting to play the lead, but also not wanting to draw attention to the fact that I am 28 years old in high school.  Last night’s musical was Phantom of the Opera, and the dream ended with me resigning myself to the fact that even though I’d wanted to play Christine Daae since I was 10, it wouldn’t be right, and it would make more sense to have me play Madame Giry.

 I have a dream of this sort perhaps three or four times a week.  They used to really upset me, but now I’m more upset by the fact that I still have them, rather than the content.

So the other day I was walking to the train from work.  I veered right off of Central Park South, rounding my way to the top of Columbus Circle, and across the street from the train stop was a man sitting on a stool with a pad and paper and a sign that said “Poems, for any occasion.”

I thought it was both clever and stupid.  Clever because I’d never seen something like this before, and maybe a tourist would think it was cool to have some rando in Central Park write them a poem they could frame or something like that…and stupid because all the poems I’ve ever loved have seemed so carefully crafted and masterfully planned out that it never occurred to me you could just write a poem spur of the moment.

And I began to think about my favorite poem (not that I really know THAT many poems).  But my favorite poem is by Sara Teasdale, and it is called “There Will Be Rest.”

There will be rest, and sure stars shining

Over the rooftops crowned with snow,

A reign of rest, serene forgetting,

The music of stillness holy and low.

I will make this world of my devising

Out of a dream in my lonely mind.

I shall find the crystal of peace –above me

Stars I shall find.

Sara Teasdale

I first heard the poem my junior year of high school when I sang in the All State Mixed Chorus.  There is an SSAATTBB vocal piece written by Frank Ticheli using this poem as lyrics.  And the first time the chorus sang through the piece, I remember wanting to cry.  We hadn’t rehearsed it at all yet.  The director was just having us plow through the piece to see how well we knew it and to hear how it was going to sound with all these hand-picked voices from across the state of New York.  It was incredible, and haunting.

Later that year, we sang it in the select chorus in my high school.  I remember being so proud, using my All-State copy with all my previous markings, already knowing the alto 1 part better than everyone else (yeah, I was that kid).

That kid.  That kid, while plagued by all the insecurities any high school kid faces, had NO insecurities about her talents and abilities.  She had so much confidence that she was going to sing for the rest of her life, sing on a Broadway stage, sing at Carnegie Hall, Lincoln Center, Radio City…

I don’t know what happened to that kid. 

I mean, yeah, I do.  She had the rug pulled out from under her and got very sick.

But that was so long ago now.  It’s over.  I know it’s over.

And yet no matter how many times I tell myself I’m well and healthy and strong, there’s a voice inside me reminding me that I’m not her anymore.  I’m not the raw, fearless, HUNGRY singer/dancer/actor I was.

I think lately I’m starting to accept that I may never be, and that maybe that’s okay…so then what now?  It’s been ten years.  Ten long years of recovery, denial, suppression, anxiety, PTSD, guilt, shame, anger…all while trying—and for all intents and purposes, succeeding—to be a functional human being. 

I wrote in a blog post last year about giving my sister my old bedroom.  About how that was “her” room.  Old Jesse’s room.  High school, singing, happy, eager, HUNGRY Jesse.  I wrote that I don’t know her anymore, cannot even remember what it’s like to BE her.  To see what she saw, to think as she had. That she’s gone.

After thinking about that poem the other day, after seeing the poet in Central Park, I got home and put on the recording of Frank Ticheli’s There Will Be Rest.

I sat cross-legged in my black leather chair and I sang it to the wall.  The whole thing, all six minutes and twenty-three seconds.  It’s still there in my brain—that tricky alto line with all it’s dissonance and awkwardness.  Still there in me–every rhythm, crescendo, decrescendo, plosive, cut-off…

I sang it to the wall, and halfway through I began to cry….because it hit me that she’s still in there somewhere.  If I can sing that whole thing ten years later…there’s proof that I was her.  That I’m still tethered to her, and maybe that’s why I keep dreaming about her.  Maybe she’s trying to tell me she’s still there, and not to miss her or mourn for her.

And maybe this is all a crock of shit and I’m just on my period and hormonal.

But I don’t think so.  Call it the power of poetry, or call it the power of music…maybe call it the power of art in general.  But I don’t think I’ve ever felt it’s power so clearly as I did when singing to my wall. It was probably one of my most important performances. 

I shared the recording with my mother, who agreed that it’s such a beautiful piece, but such a sad poem.  And I was kind of surprised because I never thought of it as sad.  Yes, I know Sara Teasdale committed suicide…so if you think about it in that context…yes, it’s very sad.

But I guess—even before being very ill—I always thought it was about the peace that we will find in death, so that we don’t have to fear it.

And if my illness gave me anything worth praising, it is that I have no fear of death.  I fear having to say goodbye, yes, and I sometimes fear the pain there may be leading up to it.  But death…the actual moment of death—I think that it must be very peaceful.  I think there will be the purest, most holy rest, and that’s what Sara was saying.

I sit here and write this and silently scold myself for writing about illness again, but then it occurs to me that maybe that is the “what now?”  Maybe I spend the rest of my life coming to peace with what happened to me.  Maybe that’s my purpose.  And maybe my search for peace with my illness is something that could be helpful to other people, like Sara’s poem was her search for peace, and it helped/helps me.

Have a good week.

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For Sean.

I’ve been told people enjoy my writing.

I know how narcissistic that sounds, but since I began blogging post-cancer, people have seemed genuinely interested in reading about a clueless girl dealing with her cancerous past, working through her repressed memories, swearing up a storm along the way—and then interested still in the “lens” of that same grown-up “girl-child” fumbling around New York City.

I’m very grateful for everyone who’s been reading and who has reached out with supportive words. Many have asked me since my very first blog back in 2012 if I’ve ever thought about writing a book, and obviously I have—I’ve had the thought “it would be cool to write a book.”

And that’s the extent of it, because I cannot write a book—at least not yet. See, writing a book (rather, writing a good book) would require me to get more personal than I’ve ever gotten before.

It’s one thing to write about sloppy drunken New Years’ Eves and subway train car mishaps. It’s easy for me to tell you “yeah it was really hard when I had cancer, and yeah I have OCD too and I struggle,” and you’ll think “oh wow, she’s so strong, I’ll bet it was really difficult, mad props, gurl.” (Or maybe you think “shut up, drama queen, get over it”—to which I invite you to scroll over to the little “X” in the upper right hand corner of your screen.)

No, the kind of book I want to write—the kind of writing on the whole that I’d eventually like to graduate to—involves a grittiness that I’m not quite ready for. It involves naming names. It involves sharing the most embarrassing parts of me. And most importantly, it involves exposing the really, really ugly parts.

There are a lot of ugly parts.

And not just ugly like, “oh yeah the throw up in the cab tasted like shishito pepper.”

Ugly like the narcissism behind dating a guy named Jesse for nine months who makes you feel like shit all the time, but hey, his name’s Jesse.

Ugly, like accusing your sister of only being nice to you when she needs to write a good essay about “overcoming obstacles.”

Ugly like locking yourself in the bathroom and smashing your bald-ass head against the door over and over and over again until your mom threatens to call a suicide hotline.

Yes, there’s a plethora of ugliness spanning the decade. And THAT’s the book I want to write. And let me tell you, its not an uplifting one. At least not just yet—because I’m still not a good person. I’m a better person. But I’m far from good.

I don’t have the guts to write that book yet. But I will. I’ve just got to work my way up to it—and start getting a bit more candid.

I think lately my grandmother has been trying to give me that push—from wherever she is. She’s been appearing in my dreams for the past week (two weeks, if you include the dreams where I’m at her house playing on the staircase).

One dream about my grandmother isn’t enough to shake me. I love her. She’s one of the best people I’ve ever known and when I dream about her it feels like a sign that she’s chillin’ around me. But more than a few dreams, and I feel the guilt.

The guilt that I ruined her entire last year of life. Destroyed it.

She died three days after the doctors declared my remission. She spent her last Christmas in a hospital with me. Her daughter (my mother), barely got to see her during her final year on Earth because of me.

And so goes the Grandmother Guilt Loop. It repeats and repeats and repeats until I remember her heart attack mid-year. And then the guilt switches focus.

It transfers from my grandmother to Sean.

Sean and I began dating in September of my senior year of high school—about three months before my diagnosis. We were both in marching band, and shared the same circle of friends. He’d been king of the Junior Prom and I always teased him about it.

I barely remember what we were like before December. But I remember the big boulder we used to sit on at King Park. We had many conversations there, and a fight once, too—a stupid high school argument I can’t even remember.

The last time we hung out before shit hit the fan was in his furnished basement. I had just come back to Syracuse from the All-State concert and was chattering away about how I’d swiped something from the hotel gift shop and then felt so guilty about it that I went and put it back.

That was my great drama back then.

A week later I’d had my biopsy. He came over the next morning along with a few others who’d gotten the “Jesse might have cancer” call. I remember there being coffee and chocolate milk and donuts and bagels, like a “welcome to the oncoming hell” reception.

I remember saying “if this is cancer, you should duck out.”

He didn’t answer.

When I was finally diagnosed on December 23rd he came to see me in the hospital after school and sat with me all night. I couldn’t move—could only lay on my stomach because of the position of the tumor, and I remember him sneaking me plates of snacks from the nurse’s Christmas party. He sat beside me while my parents got all the gruesome details of my condition from the oncologist. He distracted me from it, because I just couldn’t listen.

That night I whispered to him, “You didn’t sign up for this, Sean. It’s okay to end things here.”

He said, “I’m fine.”

If you’ve read my cancer survivorship blog you know what happens next: I devolve into a horrible, nasty, fire-breathing monster. Because what I hated more than the cancer, more than the chemo, more than the mouth sores and constipation and catheters and pills and vomit and the sound of children dying around me…was pity.

I guarantee you, friends and friends-of-my-parents-who-read-this-blog: if you dropped off food at my house, if you called our landline to check in on me, if you sent me a stuffed animal or a basket of Bath and Body Works crap…or GOD forbid one of those faceless angel statues…I spent at least ten minutes cursing and ranting about it. Maybe I did it right in front of you. Maybe you heard me in the background on the phone. Or maybe you caught me on a good day and I waited for you to be out of earshot before I hurled obscenities about your stupid charity and how if you ever brought your nosy ass back around here I’d unhook this mother-f***ing machine and beat the living hell out of you.

If you think I’m exaggerating…well…I wish I was. Because what I realized within three days of my diagnosis was if you hated me…if you thought I was a foul-mouthed, nasty little bitch…there was no way you could feel sorry for me.

Genius, no?

Imagine being my boyfriend.

Imagine being the guy who can’t snuggle with his girlfriend or even really hug or kiss her because she has no immune system most of the time. So imagine you get as close as you can and sometimes, mindlessly, you stroke her hand or her arm ever so gently.

Now imagine she slaps your hand away and demands that you stop petting her because she’s not a f***ing puppy.

Imagine this happens A LOT.

Despite my development into bald Maleficent, Sean stuck by me. During my second chemo I developed a blood infection and was in the hospital for a few weeks straight. Sean would drive up after school and if he couldn’t see me, he’d leave notes with the nurses, all folded up on loose leaf in that high-school-note-passing way.

If I was napping he’d play games with my sister and Payton (my tough-talking, 3 year-old roommate who had leukemia and cheated at cards something awful).

He became a trusted member of my family. Eventually it was part of his routine to just go wherever I was after school. He’d run errands for my parents. He’d help my sister with her math homework. He’d sit and watch the same episodes of Family Guy over and over again with me.

So when my grandmother had her heart attack on the day I was supposed to have a 12 hour chemo drip, he told my parents to go take care of her—he would give up his Saturday plans to take me and sit with me at the hospital for my treatment.

Amazing person, right?

He most certainly is.

And I resented him something fierce. I didn’t realize I resented him at the time, but I know it now.

Here was Sean, again, to the rescue, but ya know what? I had never asked him to come to my rescue. In fact, I had tried to get him to go away. I gave him an out RIGHT from the very beginning, and maybe I should’ve just said “this is over.”

But now we were stuck together to the bitter end of this nightmare. I couldn’t break up with him after all he’d done and he couldn’t break up with me in the middle of cancer and so now we were trapped (ugly, ugly, ugly, right?). But the most f***ed up part is that neither one of us WANTED to break up. Neither one of us loved the other person any less.

We just didn’t want THIS.

We wanted the high school cafeteria and the prom. We wanted Saturday nights with our friends and fooling around in the basement. We wanted to date the people we had STARTED dating.

Instead, I was a very angry, and very sick little girl and he was one of my caretakers. Our Saturday nights were spent on my couch with him stroking my arm and me yelling at him to stop stroking my arm.

But on we plunged…Sean constantly by my side through all my antics. Antics bad enough that hospital staff sat me down and told me that there were too many complaints about my behavior, and something was going to have to change. I was going to have to be nicer.

You can imagine how well I took that.

But Sean was so freaking zen about it all.

Except for one night. One night when he really told me the truth about his life…we got to arguing about something. Honestly, he was probably petting me and I probably snapped. And he broke. I remember him saying “you have no idea how hard this has been for me.”

In the moment I was furious. “Please, Sean, tell me how hard MY cancer is for YOU?

Well, you’re not around anymore at school and it sucks! I know you can’t be there, but it’s still hard not having you there! Walking into the cafeteria and seeing all the other couples sitting together and I’m alone.”

I was silent as a stone. He continued,

And you say some really hurtful things and you just have no idea how they impact people!”

What have I EVER said to you, Sean!?”

“Remember when there were no beds on the oncology floor and you had to stay on a different floor and those doctors came in with the heavy accents? And you SCREAMED that someone needed to find you some doctors that spoke some goddamn English?”

Of course I did. I remembered every day, every hour, every minute, every second of this fresh hell.

“You know you might as well have been yelling at half of the people in my family, right? Half of my family doesn’t speak fluent English and you know that! I couldn’t believe you would say that, and RIGHT in front of me!”

Got me there, partner. I was an asshole.

It was quiet for a very long time.

I started to cry. He started to cry.

“I’m sorry I said that. I truly am. And I’m sorry that I can’t be at school…but I’m not twiddling my thumbs over here. I’m fighting.”

End soap opera scene.

And although the scene ends with me semi-apologizing, I just couldn’t offer sympathy, empathy, or anything like it at the time. Husbands and wives are torn apart by illness. Try being teenagers. It’s not “The Fault in Our Stars.” It’s not a tragic love story. It’s just tragic.

I feel so much guilt now when I think of Sean, because it wasn’t until after we stopped speaking that I could see how much pain he must’ve been in. How it wasn’t just my senior year of high school that was destroyed.

It was his as well.

We stayed together through my freshman year in college (his sophomore year). But no matter how hard we tried to be a “normal” couple again…we couldn’t escape our roles of “Jesse the patient” and “Sean the caretaker.”

We haven’t spoken in at least seven years, if not eight. For the first few years after our break-up I would try to reach out every once in a while and see how he was. After all—he’d been practically family. But I got the impression that it wasn’t really good for him to speak to me and eventually stopped.

I deleted him on Facebook in a frenzy of “cancer-versary” anger three Decembers ago. It made me—and still makes me, sometimes—so upset that the only person besides my immediate family members who knows the most intimate details of what went down that year has chosen to leave me and those memories behind.

And then I realize I’m not upset by it. I’m jealous.

I am so jealous that he has the option to put those memories in the past…but I’m forced to live with them forever. At every check up. At every twinge in my back. At every painful muscle spasm. And every time I set foot in my own home.

I can’t escape it…but Sean could. And I’m glad he did. He chose to fight the fight by my side, and that was more than he ever needed to do. So he should get to choose to leave it behind. I don’t know if he’ll ever see this, but if he does:

Sean—Thank you for everything you did for me and my family. Please don’t ever think we could forget. We never, ever forget. I said earlier that my grandmother is one of the best people I’ve ever known…you are, too.

Senior Ball 2009, PhotoCredit: Lauren Sageer