Goldfish Weight

OMG Hi. I’m alive.

I survived the end of 2020 and the beginning of its twin, 2021.

I realize it’s been a minute since I last posted…I’ve been so bad.

Like, for real, it’s been two months, and I know, I know. You’re just now realizing what was missing from your year so far:

It’s not socializing with friends…

It’s not going to the theater…

It’s not a genuine feeling of safety and confidence that the world is gonna be okay and we aren’t going to continue being killed off one by one by disease, violence, and hate…

IT’S ME.

I was missing.

What was missing was me.

And if y0u’re wondering why I’m being so repetitive and blocky and short in my phrases, it is because I would literally rather stick a pen into my eye than write in this blog right now.

BTW guess what? I have over 100 gel pens.

I’ve been avoiding this first post back like the plague (too soon?) Cuz I feel bad that it’s been so long and I know that once I start again I have to keep in a good flow or else I’ll drop off again…

So here are my excuses for going MIA:

Before Christmas I was in kind of a sad, weird “Covid funk” where I ate lots of rainbow goldfish and contemplated the meaning of life all day until my boyfriend—I’m just gonna start calling him “Matt” because I feel like a thirteen year-old every time I say “my boyfriend”—came home from work and I cried because all I did all day was eat rainbow goldfish and feel sorry for myself and he has a job.

You can ask him. It’s true.

I’m currently working to shed the goldfish weight.

Then right after Christmas we got a puppy and he’s a dream, but he’s also very needy…because he is a puppy. If you follow me on social media, you’ve seen him. A lot. You probably unfollowed me to get away, and are only reading this new post because you forgot you’re on my mailing list, and now you’re gonna unsubscribe, and then I’m gonna get a notice that you unsubscribed and I’m gonna wonder if I was mean to you in high school or in Target last week, and it’s gonna be a whole thing.

Speaking of high school, I was thinking about my senior year the other day on “World Cancer Day”…where the whole world comes together to…celebrate? Cancer?

I dunno, I’m not really sure what you do on that day so I just posted a pic of me looking pathetic and sh** during treatment and was like “this is me I am strong.”

(And like, don’t worry, you don’t have to be like, “awww Jesse is making fun of herself because at heart she doesn’t truly believe she’s strong”. That’s not the case, though. I know I am strong—I’m a proud carrier of my “cancer card” and I will always lord it over your psoriasis and seasonal allergies).

What the actual f**k was I talking about, though…

Oh. High school. Yeah I was remembering how I heard that this kid, who shall remain nameless—BUT YES, I KNOW WHO YOU ARE AND I KNOW THAT YOU DID THIS—

This kid sold fancy lollipops in the cafeteria to “raise money for Jesse.” But I dunno, it must’ve paid for prom or some sh** because I didn’t see any of that money.

However, I am very, very patient. And you—-you know who you are—whenever you would like to a) apologize for using me and get right with God or b) pay the f**k up, I’m back in the 315 watching Cobra Kai, and anxiously awaiting your call.

**(I’m also aware of a similar ruse in the Syracuse community theater scene, although with that one, I don’t have names or specifics)

Also, guess what? I am learning self-defense. Matt is a black belt and is teaching me, even though every 30 seconds I go “owww, my ankle” in a really annoying voice.

Cobra Kai!!!

Cobra. Kai.

2021 has given me a lot of things I didn’t need, but am happy to take.

For example, I never, ever, ever, ever, ever, ever, ever, ever, EVER. Thought. “I wonder what happened to every single character in the ‘Karate Kid’ movies.”

But I discovered the answer in 2021. (I know it is technically a 2018 series. I just found it this year, k?)

And I found Russell Stover sugar free peanut butter cups, too.

Didn’t need ‘em. Happy to have ‘em!

Oh. Oh. OH. And this song about dinosaurs in love that I just heard yesterday and almost cried?

YEAH I DIDN’T NEED THESE THINGS.

BUT I LIKE THEM. I’LL TAKE THEM.

Alright, I’m gonna wrap this up because it’s not really going anywhere. I gotta go watch Sopranos. (Tony just whacked Ralphie for setting his horse on fire, and now he’s trying to pin it on New York.)

So yeah, I’ve been avoiding this post because it is the “band aid post.” It’s the “I’m sorry, I’ve been bad about posting, so now that I’m posting again, I’m gonna be better about posting” post.

Band aid ripped.

I’m back.

And maybe…just maybe

My next post will have a clear, concise beginning, middle and end.

And a point.

HERE’S DEWEY:

When “What Are the Chances” Means Nothing

This week alone, I’ve diagnosed myself with three cancers: brain cancer, melanoma of the eye, and cervical cancer.

I get this way whenever I have doctors appointments. I had an eye exam yesterday, and during my last two eye exams I was diagnosed with a pseudo-tumor and a nevus of the eye, consecutively.

The latter is simply a freckle on the eye that one has keep out of the sunlight and generally keep an ‘eye’ on (ha) so that it doesn’t progress into melanoma.

The former, the pseudo-tumor, was a bit more…daunting? It presented as swelling of my optic nerve (we later learned this was likely an effect of chemo, as it occurred a month after my last treatment).

But, of course, to save the asses of the PHDs, I endured a brain MRI (LOUD AF), a spinal tap (which I strangely enjoyed), an awful medication called “acetozolomide” that made the simple task of walking up a slight hill nearly impossible, and the “Maleficent” of all neuro-opthamologists.

But brain-tumor testing yielded no brain tumor…thus, a “pseudo-tumor.” A term I only wish I had made up.

I am guilty of letting a few too many years go by without going to the eye doctor. I don’t like doctors, and I try to limit my visits to the ones that seem the most important (don’t even ask me the last time I went to the dentist). And with a make-up caboodle’s-worth of free contact lenses from my ex-boyfriends mother who worked for an eye doctor, I stretched those lenses to last until now. So…four years.

Which means, yes. The only reason I even entertained going to the eye doctor again was because I ran out of contact lenses from my ex-boyfriend’s mom. Irresponsible, I know. But I’m getting better and better about going to the doctor, and that’s all I can do.

Regardless, I was certain I was about to head into news of either a brain tumor, a pseudo tumor, or melanoma of the eye. None of which, it turns out, I have.

What were the chances anyway?

Next week I have to go to the gynecologist. Always fun. Always delightful.

And having received abnormal pap results in the past–although very common in women–I’ve been prepping myself for cervical cancer.

Silly? Yes, probably.

What are the chances?

Hmm. That’s often the phrase I’m presented with when I express on any given Monday that I believe I have a brain tumor, melanoma of the eye, and cervical cancer.

“Those chances are slim. Those cancers are rare. Besides, what are the chances you get struck with another cancer?

But that is entirely the point.

I have had cancer. And one day in 2008 I whispered to myself, “what are the chances this is nothing more than a sore hip?

The chances were slim.

But it was more than a sore hip.

Ask any cancer survivor and I’m sure they’ll agree. One of the only things worse than living with the fact that you have cancer is the feeling you had when the rug was pulled out from underneath your feet. When you’d been preparing yourself for the likelier chance, and you were granted the unlikely.

When you became the “slim” in “slim to none.”

You remember that always because it was the exact moment you lost control. You never want to lose control again. And “What are the chances” means nothing.

So, you try (however silly it may seem) to prepare for the worst in all cases. You ready yourself for brain cancer, and melanoma, and cervical cancer. Because what are the chances?

It doesn’t matter. There is a chance. And you will not lose control again.

Which brings me, finally, to the proper point of this post: you.

I’d like to ask you the question, that you–specifically those of you who’ve never faced debilitating disease before–often ask me.

What are your chances?

What are the chances that you or your loved ones will get coronavirus in the coming months?

I’ll tell you, they are a lot more likely than my chances of being diagnosed with cervical cancer next week, and yet here I sit mentally preparing myself for the worst.

And there many of you sit at the pub, or at brunch, or preparing your normal Thanksgiving feast for twenty.

I’ve mostly held back my “cancer survivor’s view” of the coronavirus pandemic in favor of the more typical one: do your part, wear a mask, rah, rah, rah, stay at home.

But now I’m here to say this. I say it not as a Democrat. I say it not as a Republican. I say it without deference or feeling for Donald Trump or Joe Biden or Queen Elizabeth or Joe the Plumber: the control you might feel you’re having exerted upon you by being asked to wear a mask is absolutely nothing compared to the control you will LOSE in the midst of serious disease.

It’s the same loss of control we, as cancer survivors, felt in the moment of our diagnosis. The same loss of control we fear so vehemently that instead of looking forward to getting a new pair of glasses, we try to be mentally prepared for melanoma of the eye.

That loss of control then gives way to a loss of dignity.

Your bodily functions, however personal or embarrassing, are now charted and monitored and are more than just your own business.

Not being honest about your last bowel movement could possibly kill you.

The color of your pee is now of utmost importance and a matter of life and death.

At least you are in isolation, so the only people exposed/interested in the consistency of your bile are the nurses risking their lives to care for you.

It’s disgusting. Yes, disgusting. And humiliating. So disgusting and humiliating in fact that you can’t help but feel as though you’re nothing more than the sum of your creatnine and bilirubin count.

You’re a biology project.

At least when I reached this point, I had my mother and father there in the room to hug me and remind me who I was.

I can’t say this would’ve been as effective via Zoom.

I’m not trying to find out.

I’m going to stay inside. I’m going to wear my mask when I can’t. I’m not going to have a big holiday celebration.

So that my chances decrease.

I have control. Of those chances.

Not total control. But some control.

I’m not an influencer. I don’t believe my little rant here will reach millions. I have a nice little following here, of which I’m grateful. No matter the walk of life you come from.

But I have no delusions of how many people I can reach with this message. I do hope, however, that some of you will pass this on.

I don’t want you to die from coronavirus. I don’t want your loved ones to die from coronavirus.

When this is all over, those who still believe that masks did nothing to help, that social distancing was meaningless…I welcome your opinions. I welcome your “those masks were stupid” messages.

And if somehow, someday, it’s proven that these precautions were without effect, I will gladly listen to your ‘I told you so’s” and I’ll even respond by telling you how right you were, but how glad I am that we were careful anyway.

Please be responsible. Please be careful. Please wear a mask even if you think it’s pointless. Please reconsider your holiday gatherings.

There is more “loss of control” at stake than just the feeling of the wind on your chin in a public place.

And your chances of knowing this greater loss grow increasingly likely each day.

My Mom Thinks I’m a Difficult Person

The other day my mom told me that I remind her of “the red head on Difficult People.

And I was like…”sooo…the MAIN difficult person?”

And she was like, “not because I think you’re difficult, though!”

And I was all, “ew, eye roll emojiiiiiii”

And so you know what I told her today? I said, “Mom, you never showed me Hocus Pocus as a kid and that’s why I am the way I am.”

She laughed, but I did not.

Because can you imagine the utter humiliation I felt in college when my roommates skipped class to watch Hocus Pocus and drink pumpkin ale and I said “oh, is this Casper Meets Wendy?”

IS IT ANY WONDER I’M UNSUCCESSFUL AND UNEMPLOYED?

Well, I’ve had nothing but time during the pandemic to think about what has made me the way I am, and quarantining in the town where I grew up, I’ve been able to do some real investigating. If you live in the Syracuse area and have noticed a girl with a tiny topknot and sunglasses-even-though-it’s-overcast, driving a gray CRV slowly by your house, trying desperately to see over the steering wheel, it’s 100% me.

I’m driving by your house because

  • a) an old friend of mine used to live there and I used to go to her house and play, and I’m trying to get in touch with my inner child
  • b) I remember passing your house on the school bus and imagining whoever lived there was a sad old woman who’s husband drowned in the Erie Canal…(don’t ask, I was fascinated by the Erie Canal)
  • c) I stuck my head under the tiny waterfall of the creek that runs through your backyard (on a dare!)
  • or d) I lost my virginity in your house

I know, I know. This seems creepy and unsettling, but I promise it’s an important part of my healing process.

On some real sh–, though, I’ve found it quite therapeutic. Because ever since having cancer (yes, the cancer card! I know, you’re SHOCKED!) I’ve tried many times to remember what it felt like to not have that big black mark on my life. What it was like to be a real kid. And I think once I was well and it was time for me to go to college, I left Syracuse with the singular impression that I wouldn’t–couldn’t–ever spend more time than a summer’s vacation there ever again.

I guess I just figured it was because I had that typical, angsty, “I-HATE-MY-HOMETOWN-IT’S-SO-LAME-MAN” thing going on.

But in truth? I think it was because I was just afraid of being surrounded by history. Afraid of the memories of the “before” Jesse creeping up. The places she went, the things she did. Knowing how difficult it is sometimes to try and remember what it was like to be that girl…

Or, rather, maybe I DO remember what it was like to be that girl quite well…and what makes me sad is knowing how innocent she was, and how blindsided she would be by the darkness of the world…

Or honestly, it could’ve been the Hocus Pocus thing. IF YOU WEREN’T GONNA SHOW ME THAT MOVIE, MOM AND DAD, WHY DID YOU EVEN HAVE ME!?

Thus the road to self-discovery drones on…

Wow. I am difficult.

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.