Infinite Infinite Jest

TW: Suicide, mental health struggles

I’ve been square dancing around David Foster Wallace’s Infinite Jest since I was in college. It seems to infinitely pop up for me at various times in my life (see what I did there? That’s like, how I got the title of the post and stuff?)

I read one of his short stories in my Fiction workshop class my Junior year—a class that, for me, provided a WELCOME reprieve from the world of pirouettes, belting, and show tunes—and I remember my professor talking about him being a genius…and not just because he’d written an acclaimed 1,079 page novel called Infinite Jest that…people ACTUALLY took the time to read.

I mean, even Harry Potter never cleared 1,000 pages, and I had never even been able to focus myself long enough to read one of those books. I was in disbelief that someone could write a 1,000+ page novel…

…and because I really LIKED the short story we read in class, it occurred to me that maybe—for the right author—I could read 1,000+ pages.

I knew it would take me a very long time, but I thought I could potentially do it.

And then…the mystique grew.

Our professor shared that the author had, sadly, died from suicide a few years ago (in 2008 to be exact).

Well…wow. I thought, here’s this amazing author of whom I’ve read one short story, I’m told he’s written 1000+page novel, but now I’m also aware that his work…is limited. He’s gone. This 1000+ page novel is his LEGACY.

Not that his other work was not good…it’s just…this Infinite Jest is what put him on the literary map.

I didn’t run out right away and buy the book. Over the course of the next few years, I read other works by David Foster Wallace. Some short stories, parts of Broom of the System, and all of Brief Interviews with Hideous Men…the title of which I just was too curious about not to read cover to cover.

I had found a thick book called “The David Foster Wallace Reader” in a bookstore in Brooklyn (I used to cross burroughs weekly for EMDR sessions). I bought the book and consumed more short stories…and actually, a few chapters of Infinite Jest that were included in the “reader.”

One day, probably about 4 years after I’d first heard of David Foster Wallace, I officially purchased a copy of Infinite Jest.

And promptly did not read it.

It sat on a shelf. It moved into giant tubs of books that I hauled from apartment to apartment to parents basement to apartment back to basement.

In the early summer of 2020, when businesses were JUST started to crack their doors open again, my mom and I ventured into a little used bookstore in Syracuse…and atop one of the shelves featured on prominent display was a book called Although of Course You End Up Becoming Yourself: A Road Trip with David Foster Wallace.

I flipped through a few sections of the book, reading bits and pieces here and there (stopping, of course, for the obligatory drop of hand sanitizer every so often, as one with OCD in a pandemic does). It was an extensive interview (transcribed from many cassette tapes) with DFW that Rolling Stone author David Lipsky had done as he accompanied the author on his last leg of the book tour to promote Infinite Jest.

I bought the book, thinking maybe this is what you need to reintroduce you to the possibility of reading that colossal book that is gathering dust on your Mom’s book shelf.

I read half of the interview book…and I can’t remember why I stopped. I enjoyed it very much…I’m not sure if I was just overwhelmed with reading at the time…I had many books I was aiming to complete while I had all this pandemic time. But somehow, after reading only 150 pages, this book joined Infinite Jest back up on a shelf.

And then in December of 2020, the very first friend I’d ever had in this world died from suicide. I had not spoken to him in years, but it felt like a true connection to my childhood was gone with the snap of two fingers.

I recall, one night, staring intently at an old photograph of us as children and thinking…the two children in this photo have just no idea what the world has in store for them. One now gone, and one (if it’s not painfully obvious) still mad at the world over a cancer battle now 12 years old.

As I mentioned, I had not spoken to him for a quite a while…a guilt I still feel pretty palpably some days. I suffered from that “too-cool-to- reach-out-to-an-old-friend-they’ll-think-I’m-so-weird” syndrome, and I can’t take that back.

I recalled he was an avid reader. And so, one day, several months after his death, I asked his mother via text message if she could share with me the title of one of his favorite books.

“Have you heard of Infinite Jest?”

I knew then that I HAD to complete Infinite Jest in my lifetime.

So why am I writing about this today?

Well…I just got around to finishing Although of Course You End Up Becoming Yourself…the extensive interview with the author that I mentioned before.

I knew I wanted to complete that book before cracking Infinite Jest open again…but I’d been avoiding it.

And I’d been avoiding it because I knew it was going to be…complex for me…to read the thoughts of a man who also died from suicide (whose words were so loved by my friend who died of suicide) and then to reconcile all this with what I’ve been learning about end-of-life support and the death-positive movement.

In other words, I’ve spent months learning to be okay with death as a “THING” that happens to all of us as mortal humans. And I’ve learned ways of being available to those who are ALSO trying to find peace with death and dying.

But most of the content I’ve been exposed to has been about making people feel okay with the concept of death so that they may LIVE more fully with whatever time they’ve got…

I’m not entirely sure how to explain what I’m feeling right now. Something last week compelled me to pull the interview back off the shelf and I finished it. I even cracked Infinite Jest open the other day and read the first fifty pages.

Even just the first fifty pages…I’m overwhelmed by the author’s intelligence, and just can’t get away from the idea of the “tortured genius.”

In other words, it’s hard to escape from the idea that this man was so intelligent and unique in his thinking and really had like…a PULSE on what was ailing the world…it’s hard not to go “well he’s SO intelligent and in touch with his feelings, he must’ve known what was best for himself.”

And like…that is NOT the thing to think about suicide. That is NOT death positivity. That is a human suffering.

And so how do you, as a person who supports the death-positive movement…how do you say “death is okay, it’s okay to be at peace with death” but then also say “Oh, but suicide is still not right.”

Apologies…this is definitely more of a stream of consciousness kinda thing for me. See, I don’t have answers.

I just…I just want everyone to know that death positivity is about bringing a sense of peace about your death so that you can live WITHOUT the weight of dying fears. I hope that is clear.

Maybe there is a way, in cases of people who have suicidal thoughts, to change those thoughts into a force for good…to somehow MORPH them into a peace with an inevitable death in the futureso that living in the current moment feels better and not so painful.

Because living really IS painful. I do not deny that, not one bit

I don’t know, guys.. I just wanted to get a mess of thoughts onto a page.

I have enjoyed reading the first fifty pages of Infinite Jest knowing that my friend read these words, and they brought him happiness in the moments he read them.

There is a movie called “The End of the Tour” which stars Jason Segal as David Foster Wallace, and it is essentially the extended interview in movie/storytelling form. Jesse Eisenberg plays the Rolling Stone magazine reporter.

It’s actually a brilliant movie and I only stumbled across it after completing the interview book and looking up some more info about it. The movie came out in 2015, and I don’t recall seeing ANY publicity for it…but it’s very beautifully done.

I cried at the end…couldn’t help it. Jason Segal really captures the spirit of DFW…especially after reading the book, you feel like you’re watching the REAL guy bring his own words to life.

And it’s…you just really feel kind of lucky that this guy shared parts of his brain with us…and he gave us thousands of pages to comb through over the course of his life.

Just wish he’d stuck around.

Anyway. Thanks for reading the babble.

I can’t be Coco’d right now

Hi I’m in the middle of Starbucks wearing all black like pretending I’m a student or like a writer or something, and like every two minutes I take a sip of the coffee I don’t really like and just…wow it’s January still?

January is making me not want to leave my house, and I think it’s severely impacting my self-esteem cells so I made myself come to this Starbucks so I felt part of a community.

Before I started typing this post, I was actually journaling about how I think chemo killed my self-esteem cells since I was 17 and my id and brain were still developing and fast growing (see? Like how chemo kills all fast-growing cells?)

And like how sad is that even?

“Dear Diary, I think chemo killed my self-esteem cells.”

You know what’s sadder?

I don’t even have a diary, I started one so I could write that.

And I’m afraid to go home because if my fiance isn’t still watching soccer, I think he’s gonna make me watch Encanto, and January has just got me in a head space where I can’t do emotional Disney Pixar that’s going to wreck me.

I have been avoiding Encanto all month because I feel like I’m gonna get Coco’d, and I can’t be Coco’d in January.

I refuse to be Coco’d in January.

There’s not much else I have to share today, I just knew if I was trying not to be Coco’d in January, there are probably others, and if you’ve been Coco’d in January or you’re also still trying not to be Coco’d in January, just know that I see you, I feel you, and if we get Coco’d together, so be it, it’s gotta be February soon, right?

GET OUTTA HERE COCO!

Mufasa Taught Us

QUICK THURSDAY MINUTE:

Currently listening to the brilliant Alua Arthur and Caitlin Doughty talking/answering questions about death (I’m currently taking their MORTAL course. I’ll include the info below).

Caitlin was talking about how we have to remember we are part of a food chain. We are part of nature. We are part of a circle.

By being a human who dies, we are one with the world and the order of things. (Isn’t it great to FEEL a PART of that?)

It got me thinking, y’all…Mufasa told ya.

You can’t love The Lion King and call death positivity “morbid”. We were made to do it.

Mufasa taught us…

Check out the “MORTAL” course info here. <<<——This class is meant for anyone who will die….soo….

Hope you’re having a great week, and happy (almost) Friday!

Well…Now You Know.

Hi. I’m still alive.

And I haven’t wanted to write.

There is no one concrete reason.

By spring 2021, unemployment got me so cray in my own head that I took a full time job, a part time job, and several theater gigs to fill my time and had no time to just stop and fart for myself.

And another reason is…

The pandemic kinda got me in this head space where all I really wanted to say to people when I pulled up an empty blog post was “Well…now ya know.”

And of course…OF COURSE…that ties back to cancer. (If it didn’t, would it be a true Jesse post?)

The perpetual state of total fear that everyone was feeling toward the beginning of the pandemic…like…yeah, I was feeling that, too.

But EVEN more than that was this really snarky feeling of like, “Well…now ya know.”

Well…now ya know” what it’s like to not feel invincible.

Well…now ya know” what it’s like to constantly worry about your immune system and sanitize everything that comes into your house.

Well…now ya know” what it’s like to not want people to hug you or come close to you without your expressed permission, and have to stay home all the time.

Well…now ya know what it’s like to be FORCED to face the possibility of your own death before age 40, 30, 20…18…

And then I thought…wow, Jess, that’s pretty bitchy. You should sort that out.

And so I wasn’t writing. I just let myself work for a little while. Get used to living somewhere new: A SUBURB.

Get used to the idea that you’re not a city girl anymore, that you live in a house, and that you have a mortgage, and you are…*gulp*…getting kind of…domestic…(Christ).

And then one day, I heard the term “death doula.”

Now, I’m not going to sit here and go into detail about the different kinds of things death doulas do. I’m going to reference some lit:

https://www.nytimes.com/2021/06/24/well/doulas-death-end-of-life.html

But I knew immediately, when I did some research on what a death doula is, that it was something I really wanted to do…and I hadn’t felt certain about “things I’d like to do” in quite a long time.

So push comes to shove, and long story short…I completed a Death Doula certification thru Going With Grace (with the AMAZING, enlightening ALUA ARTHUR), and earned NEDA proficiency…

And it was through the course of accomplishing the above that I discovered the HEALTHY, less catty version of “Well…now you know…and also had a major AHA moment about what truly bothered me about having cancer—besides, of course, the fact that I had cancer):

We are incapable of talking healthily about death.

It’s true. And throughout my whole cancer treatment I really felt that no one could or would look me square in the face and talk with me about death unless we mentioned God or religion.

We can’t do it. Our western society doesn’t want to talk about it. Our med-tech-driven healthcare system doesn’t want you to recognize its existence. It offers you treatment after treatment after treatment in place of saying, when the time comes, “hi, it’s time for your body to stop.”

We can’t talk about how humans die…how unsettling it is…can’t talk about why we die… or what might this all BE for?

Even for a healthy person, the questions exist because…a healthy person is also going to die. They are supposed to.

But if we talk about it, we are labeled “morbid.”

We are not “thinking positively.” If we don’t THINK POSITIVE, we are attracting the opposite.

And the message we give our actively dying folks in America is that DYING is LOSING, and so they’d better not “give up.”

Few actively dying people hear “it is okay to go. It is natural. Your body is done fighting and that is okay.” And so they fight tooth and nail to hang on for their loved ones even when it’s their time…and as a result, they reinforce for the next generation that death is not okay and you must cling on for…dear life.

Is it a wonder we have a complex?

But we cannot, cannot, cannot talk about death. Too icky. Too uncomfortable. Too morbid. Too sad.

-*-

Van Gogh, Skull with Cigarette

I’ve been wondering for years now whether I really want to continue writing a blog that is

A) totally cancer-focused

OR

B) Just…kind of spur of the moment, chaotic blather

Neither feels authentic anymore.

And that is another reason why you haven’t heard from me.

But now I feel a little bit more direction. I want to be part of the conversation about dying and death-positivity, BECAUSE:

Regardless of who you are and what you’ve been through…2020 and the world thereafter has shown us all that we’d best at least entertain the idea that we won’t be here one day.

And you know what?

I know…I know it sounds morbid. But I swear, since I’ve started my death-positive journey…I have been more present and aware of the moments of my life. Of how I am feeling. Of what’s working and what’s not. And of what I’m grateful for.

The death positive movement IS a thing, and one of its leaders is Caitlyn Doughty of “The Order of the Good Death.” Literally, if you google “death positive,” her website is the first to come up. She kind of kickstarted the “movement” and she’s hilarious. Not morbid. She is hilarious (highly recommend her book “Smoke Gets in Your Eyes”)

But the ideas behind the movement have been around. I mean…if we’re being real, indigenous peoples have been attuned to them from the beginning.

Recently, I’ve been reading “Die Wise” by “death guru” Stephen Jenkinson…and while Jenkinson can be perceived as a somewhat controversial figure…it’s one of HIS ideas that has been sticking with me most lately (and kind of haunting me every morning).

He talks about how the problem with the western world today is that we expect to live. We wake up every day anticipating that we will live, and nothing else is okay—we are OWED the day.

I mean…you don’t need me to tell you that we are NOT owed the day. We anticipate that we’ve got all this time…and we get depressed by the monotony of our days because we just….figure it’s gonna go on and on and on.

And it quite literally is not. That’s what makes each moment significant. (Yeah, a little self-help-y…but hey…whatever helps the self.)

I could go on and and on about Stephen Jenkinson, really.

But maybe another day.

My overall point here is…THIS cancer survivor wanted to talk about death from the beginning of her cancer diagnosis…and all the well-meaning people in her life wanted to “think positively,” (which has a time and place) or give her a Bible.

And those well-meaning people…have probably not had many open conversations about death before either…so how can they be expected to know what to say about it in an instance like this?

I don’t blame anyone. But the pandemic brought a lot of those suppressed questions and curiosities about death right back to me in a very visceral way. And I think that’s why I was feeling a little…I dunno… SALTY towards people and their pandemic frenzy? (especially toward those my own age, who just couldn’t understand what I was going through way back when). Kinda like….NOW YOU GET IT. I TRIED TO EXPLAIN THIS PANICKY FEELING I WAS HAVING IN 2009.

These are “uncertain times” for everyone. Not just for me, now.

Well, now you know…” I thought.

And, I learned, through the course of the past year, that the full thought is this:

“Well, now you know…we should be talking more openly about dying and not sweeping it under the rug.”

If we talk about it, if we acknowledge it…we can not only maneuver these “uncertain times” just a little more effectively, but we can find our living moments feel just that much more ALIVE.

I intend to blog more as I explore the death-positive movement and where I fit into it.

My blog may no longer be for you, and I understand. I can promise it won’t all be posts like these. I’m sure a lady at Sephora will offend me again and I’ll launch a full-scale campaign.

But I understand if this is where I leave you.

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.

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.

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 ❤

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.

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.