"I had this moment of worry, that no matter how hard my family and friends tried, our lives were diverging, so drastically, that we would become strangers to each other despite our best efforts. Just because I was living such a different existence than they were. And my world, and my opportunities, and the psychological effort that I had to put in to deal with the situation that I was in, was very different than theirs."
I love Amanda Knox.
Her name may sound familiar; I'm not going to go into detail of her story, I encourage you highly to check out her podcast and Patreon for that. The short version is in 2007, at 20 years old as a college student studying abroad in Italy, she was wrongfully imprisoned for the murder of her roommate and friend, Meredith Kercher. She was sentenced to twenty-six years in prison, and served four before being exonerated and was allowed back home to the US. She is incredibly candid about the traumas of being coerced into giving a false confession and manipulated and abused (mentally and physically), her experiences in a prison system (in foreign country where she was actively learning the language), and how she thought when she came out four years later, she would resume her life which she had had to hit pause on so suddenly. But that life, that girl before, was gone.
Early in the interview, Amanda is asked about the idea of hope, then and how it may have changed in the now. She speaks of her fears that even though, while she was in prison, she knew her family and friends back home were supporting her, their worlds were (are?) so catastrophically different. Her mother spoke to her during her incarceration about hope for the future, and it's not that she'd lost hope, but she had to also set realistic expectations.
We can't thrive in a land providing us only with hopes and dreams of the future. That doesn't help in the now.
Amanda speaks of how yes, she knew her innocence, hoped justice would be served and she would be freed, but what if not? The trust in the judicial system waning in the face of her wrongful conviction, what if she had to stay in prison for twenty-six years? She served four before "it was all over," but trauma is never over. we simply turn to the next chapter. the pages behind us are still there. we can recall significant passages, flip back to the memories and relive them.
i understand, in a different but same way,
because this fleshsack is a prison.
not the kind with bars, and a shitty cot for a bed, with guards screaming in your face because you are crying because you miss your mom, not that kind of prison.
i have been told to be hopeful. i have been told that we will all get through this.
who the fuck is we?
at least it's not xyz. at least you're still alive. at least the drains were eventually removed. at least you can eat now, even if it's limited and painful. at least your relearned how to walk. (at least I rented the wheelchair until my insurance had purchased it and i got to keep the fucker, since I still need it sometimes, but I digress).
or, best, at least it's the good cancer.
the good cancer!!
i want to scream.
there are "good" and "bad" cancers.
you know, ones that respond well to treatment or are slow-moving,
as opposed to one that moves ferociously and quickly.
"if you have to have cancer, this is the best one you could have picked."
.... fuckery. i didn't pick anything.
"neuroendocrine cancer is rare and progressive. it's persistent and will always come back. but the good news is, it responds well to treatment and moves slow! but yours has already metastasized all over your body, it's stage iv, so yeah, there's no curing this or fixing it."
a shit sandwich on a silver platter.
what about the time they told me that my cancer had been successfully removed and somebody, somebody, put the notion into my head that I was cancer-free after my Whipple Procedure? I had a facebook memories thing come up last week, on what would have been Thanksgiving or the following day, stating i was thankful to be cancer free. who. fucking. lied. to me.
because they told me they had removed all the malignant masses that they had known about. Known about. They had also found additional malignant tumors, ones they hadn't known were there.
so then, if they found more than what they were looking for, why in the fuck would they think they got it all?
and further, if it is stage iv and removing it doesn't actually remove it, because it's just there or whatever, waiting, creeping, why in the fuck would you tell someone they are cancer free?
or the first time I arrived at Johns Hopkins University for "specialized continuance of care" a year and a month post-Whipple, to be told by a surgical oncologist whose specialty is neuroendocrine tumors that in his professional opinion, my Whipple Procedure was unnecessarily invasive and didn't really... do... anything. That the correct course of action was the injection treatment I am now on, because of the persistence of neuroendocrine tumors/cancer, they'll just keep cropping back up and you can't just keep cutting a person open to remove them, scar tissue build-up and stuff.
like amanda knox, i too have floundering faith in the system that was supposed to protect me.
... the system. not the individuals.
i am sad. i don't harbor any ill feelings against my surgeon who performed my Whipple.
honestly, i love him. that makes it harder.
i was crushed;
now, two years after that news i am just sad.
tell me how to be hopeful.
yes, i can and do hope that the treatments work and make plans, but the thing is, there isn't "when this is over," not til we're dead in the ground. I wrote the other day on Patreon, that life is cumulative. You don't get to come out of prison, or walk away from shaking death's hand, and just resume life as it was. There isn't an over. There is processing and wading through it.
there are scans every few months.
"for what?" people ask, if I mention these.
"to see if i light up like a christmas tree." and I do.
little radioactive blips that show where the cancer still is and will continue to be.
little radioactive cancer patient, lit like a christmas tree and not in the fun way.
the blips don't glow any larger, which means the treatment is working.
the blips also don't glow any smaller, which means the treatment isn't working as well as I'd hoped it would so even though the PET scan results are "good" and show "effective treatment," i am not good. tell me about how this is one of the good cancers.
tell me about how to be hopeful.
tell me how to take this information and be hopeful.
i'm sorry, i'm not angry at you, reader.
I'm just angry. and hurt. and alone.
hope can feel dangerous. a trap you lie for yourself.
Amanda compares it to a light at the end of the tunnel, but it's too bright, so her eyes are squeezed tight to keep herself from being blinded, and honestly that's a much healthier way of viewing it.
it's hard to feel hopeful when you're in the hospital parking garage and you hang up the handicap placard that makes you feel like an imposter. you don't look old enough, you don't look sick enough, and yet here you are, already fifteen minutes late and yet you can't get out of your car because fuck. just being at the hospital is enough to set me into tears. i go every four weeks for treatment.
i get two calls while writing this blog reminding me that this week i need to get labs drawn, and have an appointment with my oncologist, and then an appointment upstairs at the infusion center. but i was just there, i want to wail, but evidently it's time to go back, so I say happily, okay thank you, I'll be there! When I hang up, I want to cry. But instead, I'll type.
you learn to put on this façade of hopefulness,
because people need you to be strong and brave and inspirational.
(you need you to be those things too, erin.)
Cancer patients hate being called those things though, by the way. it's trauma porn.
(where the person saying those words, consuming the story, feels better for it, because you've done the good thing for the sick person?
but nothing's really done because telling someone they are inspirational doesn't do anything? trauma porn.)
i don't mean to make you feel badly. oh no i've told her she is brave and inspirational! its alright. well it's not but to err is human and whatnot. but it's exhausting, wearing the façade for others. "masking."
being brave is something you get to choose. being inspirational is something you choose. being a warrior. oh god to be a fucking warrior. strap on a suit of armor and a weapon and wield it wildly into battle. Whipple Warrior! thats a thing, it's a hashtag. I've used it. i hate it, but I use it, and it works. That's how Whipple patients have found me on Instagram. Thats how I've found them.
i didn't get to choose to be strong and brave and inspirational.
in a way here, i guess I am reclaiming these words.
this platform is giving me a space to own my traumas and turn them into inspiration.
that's okay, self. you can hate having been put into this role while still just rolling with it.
no, no one is forcing me to blog. but it's not brave to "fight cancer."
or even write about my story. the only thing that makes "fighting cancer" "brave" is the fact that it makes people uncomfortable. it's brave to make people feel uncomfortable because societal norms tell us comfort of everyone around us is of upmost importance (but only if they're an upper-middleclass white male).
what I mean is, i didn't choose to have cancer,
wouldn't have picked this even if it is a good one.
i "choose" to fight the fight and all that inspirational bullshit as much as any one of us chose to woke up this morning.
you don't choose to wake up, you just fucking do. whether it's an alarm or your internal clock, you're awake. you just are.
i am no braver for existing with cancer than you are for making yourself toast.
i wonder if I am being too harsh. i wonder if, if Amanda Knox reads this (she has my link), her face will blanche because this is not the message of hope she was putting forth on her platform. i wonder when I can let go of the anger. I really don't feel angry, but when I read my words back, i can sense it; latent underlying anger.
although I've also argued that "anger isn't an emotion, it's the most basic thing any animal can experience." It's a response, it's a lack of emotion. latent underlying exhaustion?
i wonder if, dear reader, you had a family member who passed away from a sudden, cruel, more-aggressive cancer, or you yourself have been diagnosed; a bad cancer, a bad illness. a worse one. were you angry when i said they all sucked and that mine gets to be lumped in with theirs? i'm not accusing you, i'm wondering because that is my initial reaction to myself. disgust with my admittance that this is shitty, what I am experiencing, because knowing my situation is shit and allowing myself to be vulnerable to that acceptance --
is that what brave is? accepting this is really fucked up and shrugging and moving forward anyway? is that what makes it brave, accepting you are broken? .... what then of those who don't accept they are broken? are they brave, too? this is why we don't like that word.
my dad died of metastatic pancreatic cancer. he couldn't accept he was broken. marines never say die. (or was that the goonies?)
it had spread to his bones, his lungs, his brain, his blood. it was fast and cruel, when it decided to become that way. he hid it for a long time, i think, but i don't even know because he hid it so well. he was doing okay, and getting better, he assured me, and then he was suddenly on oxygen tanks, and collapsing in the hallway and being rushed to the local ER and helicoptered to DC where he would pass away some few days later.
is it unfair of me, to him, to say that there is no good or bad cancer?
because that was certainly, without question, bad.
but, i remind myself too, it's not a competition.
i say this a lot, when people apologize for letting their inhibitions down, for "burdening me" with their traumas, for "bitching to the person with fucking cancer."
but i don't want you to apologize.
I want you to open up too.
you can be brave, too, you know, you don't have to have cancer to be brave.
your traumas are valid, too.
if it is a competition, it's not one i want to fucking win.
you're not burdening me when you share with me. you're reminding me that in all this fucking bullshit,
i'm not alone.