"Do you count the wins?"
I am curled up on my therapist's couch, fidgeting with my thick wool scarf that I have draped across myself as a sort of blanket.
"I don't have wins," I say through a new wave of tears, "otherwise I wouldn't spend each day wondering what the fuck I've done all day."
"You do have wins," Norm replies calmly, "you made it here today, and that's a win. You get out of bed in the mornings, and every day, that's a win, because I know how depression beats you down and I know how hard it is to get out of bed, and that that is a win, that some days you cannot get out of bed."
"But I've never had the depression so bad I can't get out of bed!" I wail at him dramatically, "I have a kid! I have to get out of bed! … I just … can't get off of the couch afterwards, is all," my voice grows softer at the realization of what I'm admitting. I add in, louder, "I don't count those as wins. Little things aren't wins, they're just things I have to get done."
"I didn't say they had to be big wins. They don't have to be monumental, incredible, life-changing wins. Little wins, every day wins. You need to acknowledge them."
He hands me a notebook and tells me he wants me to keep track of my wins. I had lamented earlier that it sucks being so self-aware!,
"It sucks," I cry, "I know that all I have to do is switch my PCM, that it's just a phone call, or a website, and if I get back on my Cymbalta--"
"I didn't know you were off your Cymbalta."
"I went off it in November," I admit weakly before continuing, "but if I get back on it, if I could do this one thing, I could start to do all the other things! And then, things would get better..."
"But making the call is two-thirds of the work, it's the hardest part of the task."
"Yes! I saw this, this thing, this meme? It said basically like, people with ADHD, with executive dysfunction, like, we know how to do the thing! It's not that we don't know. We know, we know six different ways to do it and the best method to use in any given situation! It's the matter of doing it!"
"It's too much," I agree, weeping openly again. "It sucks being so self-aware, I know how to fix it I just can't!"
"No," his disagrees now, "it sucks being so self-aware of only the negative."
This is where he had suggested counting the wins.
Somewhere in the conversation, I said I try to! I try to count the wins!
"I was thinking of, over the summer, I remember I had this one really really good week! I had made three phone calls, and I'd made it to appointments!"
He is grinning and nodding emphatically, remembering this exceptional week with me.
"I remembered how proud I was, I made three phone calls! And remembering that now... just made me feel so. fucking. stupid."
"Wow, that took a quick turn." he snorts, and I grin sheepishly.
"It's truuue though," I groan, "that's how it is! My brain! Just, wow, you are so pathetic, you were proud of yourself for making phone calls. like, wooo, wow, good job." I slow clap.
"I used to do things!" I tell him.
"You used to not have cancer."
I cry. How dare he use the cancer card on the cancer patient.
I don't know how I spend my days. I don't know what I do all day; I think of all the things I should be doing, that need to be done, the chores, the endless tasks, the calls and appointments that loom in my mind but I refuse to allow to happen, I wander from room to room vacantly, wondering what I should do, where do I start, I am so tired, what do I do? I am immobilized when Cake and Gage are at school and work: by my loneliness, by my lack of direction. They come home, and there is too much going on and too much to do and I could get so much more done if they just weren't up my ass--but that's not true because I don't get anything done when they are not here, I am void.
Norm tells me this is classic ADHD. He suggests I set alarms, timers. We acknowledge that while society has taught us "work first, fun later," an ADHD brain needs the opposite to function. We have no dopamine in the fuel tank, and we need to have fun first, fill up on fuel, before we can work. Can't run on empty! I agree and I understand and I know these things make sense but they make me angry
"I want to win like I used to!" I howl at him.
Writing this now, I realize that part of this is grappling with my own loss of expectations.
To win, like I used to, to win like I had expected I would be at this point in my life.
I used to be an integral part of the indie sewing community. I tested PDF patterns prior to their release, I sewed up sample fabrics and promoted them for sale. I was basically an influencer for sewists, and I was good at it. It was fast-paced, with tight turnaround deadlines, competitive; I was in a coveted position and I'd apply for jobs and get them because of who I was; I relished in this, in feeling in-demand, in feeling valued for my artwork I was producing. My photography excelled. I have gorgeous photos of Cake for the first four or five years of her life because I'd get the detail-shots companies needed, but I'd get the gorgeous mom-shots too, documenting this beautiful human growing up before my eyes. I had a job working as a design assistant for one of the pattern companies. I was fulfilled, I won daily.
Our company was growing. My reach was growing. There was so much to do all the time and all I needed was a little more time. Once Cake is in public school, I will have time, I thought.
Then Cancer happened.
then the Pandemic.
now, finally, she is in public school,
and my entire world has shifted.
not even shifted. altered.
over three years have passed and it's an entire lifetime ago where I sewed promotional pieces, glanced at a calendar and thought "yeah I can squeeze in one more sew this week," and signed up for a last-minute round, where I woke up with an energy I could take for granted.
when I wake up now, it is slow, calculated. it is heavy and sickly feeling, a bile in my throat and a rock in my stomach. my head pounds. if i am lucky, it passes, but many days, it is just default.
i wrote the above about three weeks ago. mid writing, i lost part of it. then I felt sick and needed to lay down. It frustrated me more, made me angrier. what a perfect highlight to the fact that I cannot fucking win. what wins to count!
then COVID came to our house.
the three of us are fully vaccinated. I'm boosted. we never freakin leave the house. We wear our masks everywhere. But ayyye that's how it goes and ultimately it's okay because we are okay. i'm grateful for that.
it lingered forever. Gage and I were both down for a good 10-14 days.
Cake never felt a thing and kept asking if she could go play with a friend.
"No, babe, we have COVID, you're quarantining."
"Oh man, I forgot."
... must be nice kid, lol.
and i've been thinking, a lot, in these last three weeks, as I considered how I needed to finish writing, how I'd lost the momentum for it, how COVID felt like it drained me of the momentum for everything. like a stone that finally rolled to a standstill and could roll no further, sinking heavier, heavier into mud. my body, my mind, dense, heavy, sinking, sticky squelching mud. haven't kept up with my procreate classes. haven't kept up with writing. haven't kept up with the laundry or house chores or my text messages, messages checking in on me, asking me if they can help, and i can't summon the mental capacity to even text back what kind of swiss cheese brain is this--
i've thought about choices.
because in that same session with norm that had prompted the beginnings of this post, I had lamented:
don't i have what people want? people want to stay home and do whatever they want and not have to go to work, right? i've got that. so why can't I be happy for it?
and he pointed out, no. people want to have choices. people want the ability to work and choose to stay home instead. people want to have worked and then enjoy reaping the rewards of their hard work.
and do i even get to do "whatever I want" all day?
i've said before. i didn't choose this. wouldn't choose this life, ever.
of living through cancer.
with? living with cancer?
cancer.. thriver... survivor.. am i survivor? i'm surviving.
"I'm not dead yet!" i answer with a wry smile when my friends ask me how i'm doing.
i don't choose to sit home and do whatever i want all day.
i am homebound because i have cancer and cancer has taken away my ability to work.
i am homebound because i have cancer, and cancer has taken away my ability to do things i enjoy.
even the things at home.
like sewing, because it's too much to print and piece a pattern, then cut it out, lay out the fabric, cut it out, sew it together. there's ironing and back and forth and trimming and cutting and so many involved steps and... i love it. i miss it. it's exhausting now.
so i'll cross stitch.
but that requires focus, to read a pattern, to sit upright, to see up close, and my eyes burn, my head is pounding, my body aches and i want to lie down, and close my eyes
so i put on an audiobook, or a podcast, i'll listen to someone's soothing voice narrate me away into a different world, i'll expand my mind...
but my body, my mind, are tired, and so i fall asleep.
wake up several hours later, several episodes or chapters ahead of what makes sense, frustrated because where the hell did i leave off?
and sometimes it takes me days to listen to a single episode.
not always. sometimes i binge an entire season in a day, like any other normal person these days, lol.
there's this guilt in me i can't shake, but i'm trying, so hard, to unlearn it, wherever it came from.
i can point my finger at late-stage capitalism, at survivor guilt, at cPTSD, whatever i like.
doesn't change the fact that it's there and i know it is and i need to unlearn it.
i've been reading The Psychopath Test by Jon Ronson. In it, he interviews a woman who survived a bombing on a train in London. She formed a survivor group; many of those in the group admitted that since the attack, they found little purpose or enjoyment out of life anymore. how do you move on from something as senseless as a terror attack on your way to work one morning?
and i get it.
i hate it. but i get it.
every bit of apparent logic says surviving death should make you grateful and thankful and vibrant and full of life
but instead it's just (or, can be) harrowing.
it's a good word for this.
i'm trying to actively find joy in small things. it's hard to count my wins.
i've been working on it for three weeks now apparently, and i am trying.
why do we feel the need to rush to the end, rush through life, rush to the finish line, we'll enjoy it when we get to the end, just get there fast! when instead we can enjoy the road on the way there? enjoy the smallest details along the way?
so i'm trying to actively see the beauty in the mundane. truly enjoy my morning coffee. listening to the crackle of the record player. when my cats leap into my lap, i engage with them actively. enjoy their presence.
Cake hugs me. I lean in and breathe in the scent of her hair, brush my cheek against hers and feel how soft her skin is, how beautiful her little nose is, the sound of her little voice singing as she skips away.
i enjoy the act of painting my nails. they're short, bitten down, but that's okay. i watch the colors slowly build through each layer. absorb my audiobook while i admire how shiny the topcoat makes my nails as they dry.
i picked up a quilt i started about two years ago. must have been; it was a quarantine project, I remember cutting squares in what was Cake's homeschool classroom at the time.
it's still a good amount of shuffling back and forth, ironing, stitching, squaring off pieces. but they're smaller pieces (for now, lol). i can work in small sections, it's repetitive enough i can put it down and pick it back up and remember the steps pretty easily. it's unfamiliar enough (i'm an apparel seamstress, it's a different world than quilting) that i'm still experiencing the new excitement of working with unfamiliar fabric, unfamiliar stitching methods. i've decided i'll send the top in to be professionally quilted, and i'm excited just thinking about recieving it back, how it will feel to cuddle on the couch with a real quilt, heirloom quality type shit.
i've been touching the other quilting fabrics i've collected over the years, because i am a sewist only because sewing is what you do with fabric, and first and foremost, i am a fabric collector.
i'm allowing myself excitement, looking forward to things i like doing.
i'm getting better at it.
little blips of happiness, of serotonin, of allowing wins in.
if i can allow my world to be beautiful, perhaps i can allow myself to find myself such as well.
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"Would you like a pastry today? We're running a special, they're half price!"
My stomach has been rather uncertain all morning (I got sick a little first thing waking up) and I'm not particularly hungry, but I love pastries. And a good deal. So I tell the barista through the drive-through speaker, sure, do you have a cheese danish?
She asks if she can heat it up for me. She is so bright, energetic, and seems genuinely happy. I can feel her warmth and exuberance in her voice, through the brown speaker box. I've been in a hazy brain-fog all day, but hearing her speak, I can't help but find myself grinning back at the box. Contagious happiness.
How do you explain to your barista that you were in the middle of having an existential crisis, but her brightness pulled you out for a brief, glorious moment?
That you've been filled with overwhelming dread and anxiety for no pinpoint-able reason all morning (now afternoon), that it took you hours to be able to will yourself to leave the house, (that the word agoraphobic flutters in your mind, o no), that you know the root of so many of your problems but the tangled web is too much to uncover so you bury it bury it like an ugly little screaming mandrake baby
Roots of problems: I haven't taken my meds (cymbalta: depression & anxiety, adderall: adhd) in two months
Because I need to call for refills
But I also need to get a new PCM (Primary Care Manager), one who believes patients,
one who doesn't blandly tell me that I should have learned how to deal with my ADHD symptoms by now.
But to get a new PCM would be to make a phone call, or to find the website, a task, it's easy,
but executive dysfunction stands in the way, it's a symptom of ADHD,
You know, that thing my PCM said I should have just learned to manage on my own by now, because I'm an adult?
She literally told me that. That if my ADHD was really "that bad," I would have gotten diagnosed sooner.
as if huge life-changing moments,
like having a child,
or being diagnosed with, i dont know, cancer, twice,
or having one of the most invasive abdominal surgeries available,
or emergency bowel surgery,
or a global pandemic,
or just getting older and life progressing generally as it does--
as if life doesn't change and alter and so do your mental health needs?
So here's me, managing, on my own.
I eventually did get her to write me a prescription for Adderall
But so low a dose everyone else is surprised it works at all (but it does!)
(a testament to how dopamine-depleted my brain is, my therapist muses)
And with so much guilt and belittling and the reminder that if this doesn't work I'm SOL because she doesn't want to give me a higher script. Just doesn't want to. Doesn't feel it's necessary.
Went so far as to lie to me about the maximum dosages; I checked with a pharmacist, and online, and my therapist.
And well, adderall is not working well enough but goddamnit it has to! It's all I can do!
Then the Rx runs out and to refill I have to talk to my PCM and so I just go off All Medications Completely
Which any doctor or person who has taken a mood stabilizer can tell you,
Is a Bad Idea™️.
And apparently, it's my Trauma Season.
It was trauma Month (November), but I'm realizing a pattern between this winter and last:
At the end of October, start pushing away from everything and everyone.
November: trauma month! I don't know what happens here because my brain DUMPS IT ALL it is a depressive haze
In November, Stop taking my meds. I'm depressed anyway!! They're oBvIoUsLy NoT wOrKiNg! Go off them all!
December: proceed with depressive haze, act surprised when my mental health goes down the shitter.
So we're in January now. I don't remember when things got better-ish last year, when I finally called my PCM. March maybe? Spring.
Is this just my pattern until I can resolve my trauma? Shut down for five months out of the year?
Whenever that time comes this year, to get back on my cymbalta, I will also request the Provigil prescription I need, in lieu of Adderall.
Provigil was originally created to treat narcolepsy, but it can be used to treat other forms of chronic fatigue.
During the summer, before I had started the Adderall, my therapist had suggested Provigil to help manage both my ADHD and my chronic fatigue as a result of cancer.
"How like a nonprescriber," my PCM had scoffed at the recommendation, before begrudgingly giving me an Adderall Rx instead.
But now my oncologist also agrees Provigil is a good choice, he has seen several cancer patients doing well on it, and he agrees it could help manage my ADHD symptoms in lieu of Adderall--
but I don't know the recommended dose and so I feel unprepared and anxious about talking to my PCM and this thought plays out every time I think of her because the roots are intertwined
And so I become an anxious puddled mess just thinking of any PCM exchange, any notion of getting back onto my medications that level the playing field for my brain throws me spiraling. That's why I need back on the meds. But I can't get on them, because I need them to get on them. Or something. it's cyclical and nonsensical and so frustrating because I am completely, horribly self-aware of all this mess.
but I can't do the things right now.
the haziness, drifting around the house confused, at a loss, it literally adds up to hours of my day. i have no drive or ambition or purpose i am just foggy tired existing it's day to day but it's... minimal. i want to be a person again but i can't right now.
How do you explain this to your barista who sounds so genuinely sorry that you're having a bad day? I don't have to explain it. She can hear it in my voice: just as I could hear her warmth and compassion and brightness, she can hear the flood of sadness as the wall cracks in our moment of shared transparency.
Jessica, my barista, sounds also surprised by my sudden honesty, but she doesn't pull away; she comforts me. "I really do hope your day gets better--and I'm not just saying that, I really do." I can hear it in her voice, her sincerity. I tell her that, I tell her that that's why I felt so compelled to open up; she was sincere with me, so I was, too.
When I pull around to pay, Jessica and Beth greet me. Beth hands me my order with the softest eyes, and Jessica tells me she asked her manager and they are covering my order for me, they hope it helps pick me up. I choke on tears and promise them when I'm not running behind, I will come in and talk to them and properly thank them for their kindness. Jessica tells me her schedule and invites me to come in and chat.
I'm bouncing around a couple books right now, but one of them is Amanda Palmer's The Art of Asking. In it, she speaks of her time as a human statue, The Bride, and how in a seemingly small exchange of money for a flower from her bouquet, she would see those strangers dropping money in her vase, truly look into their eyes and see them, their raw, naked souls, as she came to life and handed them a freshly picked flower in return.
And she would blink to them. I see you.
And sometimes, they would blink back. No one ever sees me. Thank you.
It's not about the comped drink and snack. I would have happily paid for them, was ready to. It was absolutely a kind and so appreciated gesture that really compounded the experience; love me a coffee.
But it's about the connection.
And it's about perspective.
I could easily say, "In a moment of weakness, I fell apart in front of a stranger taking my order."
Instead, I am taking this in as... in a shared moment of transparency and connection, one human who had an abundance of positive energy was willing to share that positivity to another human who was very obviously struggling. To the benefit of both of us, I hope.
She could easily have taken my cancer patient urge to overshare and groaned and said "what a drag this lady is" like i really bummed the conversation out. But she lifted me up. In such a way that... I don't know how to describe her. Jessica is brightness.
I haven't had a normal social life in over three years, since all the Medical Bullshit and the Pandemic came to fuck me up and lock me in.
My friendships, my social life, almost all live in my phone. That's okay. I'm glad to have that at all.
In those three years, what used to be "gets nervous at parties" has turned into full-blown "can't articulate words" and "railroads conversations" Social Anxiety when I'm around Actual Real-Life Humans.
It takes a lot for me to amp myself up to leave the house and I'm worried I'm going to become a shut-in and I'm terrified I don't know how to stop it.
But it's these little exchanges. These moments with perfect strangers.
(I do like hanging out with my friends don't get me wrong)
But these beautiful, unplanned, happenstance moments where a perfect stranger
can see you, and be with you, even just briefly
when you can share that humanity with just any one person
it makes you, them, everything shine just a little bit brighter.
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i type the title. delete it. type it. search the definition. i have to be sure.
i am correct in my usage, but now displeased because the definition is much too simplistic. the definition doesn't give you understanding of the fear, the terror, the confusion.
maybe i am incorrect in my usage after all, if it doesn't match.
maybe definitions are merely frameworks.
last week, we drove up north
to the place that is referred to
when others ask us where we're from.
"home" in the
"are you going home for the holidays?"
we drove to rural southern maryland,
although less rural than the days we left it.
it is not my home. it is merely where home once was.
(i moved around a lot as a kid. i've moved around a bit as an adult.
home is wherever you decide it to be.)
we weren't there for the holidays, either.
i mean, we were, in that it is holiday season,
but that's not why we went.
we went "home" because
"back home" is where everyone's parents still live.
my mom, my best friend's parents, my other best friend's parents.
they live there, and so the kids, now adults, flock back periodically throughout the year.
most predictably at holidays.
and so when Cait tells me she will be flying in from Canada,
I make plans.
and when Katie and I realize we will both be in Maryland at the same time,
Katie living in the Florida Keys, an eighteen hour drive from "back home,"
we shriek in delight and make plans as well.
i am not going home for the holidays,
i laugh when people ask.
oh no, we spend christmas actually home.
Christmas is for the three of us, our little family unit.
it's nice. it's quiet. it's calm,
and it's ours.
Cait is one of my childhood best friends. I don't know how or when we met. I moved to Maryland in sixth grade, so we have a general timeframe; but mostly, she's just always been there. We've grown older and apart and come together again in the ebb and flow in life; the one that all of my friends and I agree upon now as being a pretty normal thing to friendship, but in our twenties it was so... personal.
i wish we were more graceful when we were younger. in ten years, i will likely wish the same thing upon my thirty-year-old being.
this isn't where i was going to go with this post, but i have to highlight this part here
because i just made reference to the future. the future in a large chunk of time.
and that is big for me.
i am not ready to write about that, not here and not now and maybe not for awhile because that is too much for my fragile mind to consider right now, but
i let it slip
and to you
that there is
layer of hope in me
in ten years,
suggests that some part of me...
believes i will survive another ten years.
(teach me how to be hopeful.)
Mama Lorraine and Papa Joe have three children of their own; Cait is their eldest.
Gage moved to Florida from Maryland when we were in high school. The two of us did not start dating until after he had moved. Eight months into our long-distance relationship (which is a thousand lifetimes when you are a highs school student), Gage saved enough money to fly back and visit me.
My parents would not let him stay at our house.
.... part of me gets it, i guess. in a really archaic, distrustful way.
My parents have a large house. The one my mom still lives in. The one we sleep in when we visit "back home" is my teenage bedroom. It was a four bedroom house. Five now, they finished the basement. I have one sibling.
They would not let a sixteen year old child who flew from Florida to Maryland, by himself, stay overnight in their house because he had the audacity to have a penis! SCREAM.
PS nothing will stop horny teenagers
PPS i'm queer and a lot of my friends are queer and we touched a LOT of boobs during girls-only sleepovers, back before we all realized how very gay we are but i digress
It was Mama Lorraine and Papa Joe who invited Gage to stay with them. They had more children and less rooms. Less stigma and more compassion, too.
We stop by to see them whenever we can, whenever we are in town. They remind us we don't need a holiday to come visit. That Cait doesn't need to be in town for us to be welcome there.
When you walk into their home, you can feel it.
Its one of those magical places that is always warm, bursting with love. It has Good Energy. passes the vibe check. etc. lol.
It is real, it is lived in. it is home the second i step in. I know where the mugs are, I drop my phone and cardigan where they may lay, I make myself a coffee and make myself at home. Cake takes off for hours, fully enamored with Aunt Krissy and Uncle Bren and their collector's pieces they wince at while she squeals over Sailor Moon figures and Pokemon plushies and she heckles Kristen the entire evening about keeping her beloved Lugia stuffy. At some point I have to remind both Cake and Kristen that Cake does not get to lay ownership over everything she likes just because Kristen adores spoiling her; Cake's face falls slightly, Kristen looks relieved. I adore them.
We'd made the plans to spend the night there. My mom's house is only twenty minutes down the road (country backroads.. take me home.. through the woods.. the drive is loongg..) but it'll be fun to have a sleepover, to not have to rush goodbyes because the sky grows dark, to enjoy drinking into befuddlement, to let the kid crash on the couch after a feast of a dinner, to wake up and drink copious amounts of coffee ground fresh that morning by Mama L or by Cait or by any of the family really because their Love Language is Coffee. Gage and I also speak this love language.
It was an incredible evening, a full house. Because of the pandemic, and health, I haven't seen Cait in person in three or so years, I don't remember. It is the first time I've met her husband, Ryan. He is amazing; he seems soft and sweet, gentle and funny and kind. The Good Things you hope to see your best friend share in.
"Do we like him?" Mama L whispers, smiling at me over coffee.
"We love him," I agree, grinning, hugging her.
I had explained to Cake many times in advance that Aunt Caitlin is called this because she is my best friend, and we may choose our families, and Cait and I love each other like sisters and she loves Cake like her Niece, so she is Aunt Cait. Marriage makes Ryan "Uncle Ryan," but she's never met him before and she may call him Mister Ryan if she prefers to get to know him and she may decide when or if she calls him Uncle.
Cake takes to Uncle Ryan immediately.
I am telling you these details because I need you to know,
I need you to know how good things were,
how perfect and filled with happiness and love and joy i was filled with
.... i still don't think i'm conveying enough, i don't know that i can.
my mind, and my body,
are dark, and depressed, and in pain,
so much excruciating pain,
so much of the time.
and it left me. the mental anguish.
Mama L and Papa Joe, their house is peace to me.
but there is no break from the physical.
and the trip beforehand was long
the week beforehand was long
the month of december has been
and i think really maybe thats why
when i was at peace
my mind left.
there was a point in the night where i just... lost focus.
i don't know how to explain it, other than sometimes my brain just gets... disoriented.
i don't know if it's the cancer, or the treatment, or the cPTSD. if it's just sheer exhaustion piling up, if it is compounded by ADHD. if it's everything rolled into one. i don't know. i just know that sometimes, i lose time. it's terrifying, disorienting, confusing.
i am on the couch. we have all decided we are going to play a game in the living room while we wait for dinner.
i don't know where this context comes from. i don't know how i got on the couch, because last I remember, i thought...
.... last I remember ...i thought..?
i was in the dining room?
picking at cookies?
but now i am sitting on the couch and gage has his arm wrapped around me and he and everyone is typing animatedly on their phones
and i have my phone in my hand too
and i have a website pulled up and it matches the screen on the tv
what are we doing? i am asking, maybe outloud, although now i don't remember
it must have been, because somehow i knew we were playing a game, so someone must have answered me.
and we are supposed to read the prompts and fill in our answers
and then we will all vote on the funniest answers
it is like ad libs and cards against humanity
and that makes sense,
or it would if the words on the phone made sense
there are words, and i can read the words, but they don't make sense.
they are shaped like a sentence but they do not read like a sentence
i type something to make the prompt go away
and another pops up
and it also doesn't make sense
it is also words shaped like a sentence with no sense in it at all
and there is a timer on the screen
and i don't understand what we are doing
i dont know how i got here
and i dont know how my phone is in my hand
and i can't read words anymore which is cool
and i begin to cry.
just crying. on the couch.
in my best-friend's parent's home.
and i am trying to make the tears stop
because to cry is to draw attention to the fact that i am broken
but it is too late,
they have seen me
and that makes me cry harder
and now i am sobbing
on the couch
while everyone stares at me oh god
like a lost child
who cannot find their mother
who has wandered too far in the mall
it is overwhelming and too much and i cry
this is not how adults behave
this is not how you act around others
this is not how christmas works
the guilt that comes with illness
because Gage is squeezing me tight, reminding me it's okay, i am okay,
everyone here loves you it is okay
as I choke out I'm sorry, I'm sorry, I don't know what's wrong I just don't know what is happening--
and Mama L sits on the other side of me and holds my hand
and Cait is before me
and their soft soothing voices are salve to my mind
and they whisper that
they forget too
they forget things and places and names and words
and i squawk at them between the tears that they absolutely must listen to Neil Gaiman's reading of The Man Who Forgot Ray Bradbury, it's really apt, it's an ode to Ray Bradbury but it's a piece about losing your memory and --
this is who i am. i am sobbing hysterically on the couch because i am so fucking lost and confused that the only response my body could think up was literally Cry For Help, and my outward response is to recommend readings that really highlight the conversation at hand.
I cannot remember how i got here, to being a sobbing lump ruining dinner, but I can remember that Neil Gaiman put into words what I'm feeling much better than I can right now, crying on your couch Mama L.
... that's it. The memory ends there, with Cait and Mama L speaking their melodic voices, with Mama L and Gage rubbing me comfortingly until the tears and the shivering and apologies somehow come to an end.
later in the evening--i only know it is later because i know i was sitting on the opposing couch--Mama Lorraine and I are snuggling. My brain lumps this memory in with the one just before, insists they go together. I know they do not, but I am beginning to see why my brain insists they are connected.
because they are, in emotion,
the feeling of safety as I snuggled against this woman who has invited me into her home over the last fifteen plus years
who does not have to love me but gives it
so abundant and overwhelmingly free,
who has loved my husband and welcomed him into their home before she even truly knew who he was, other than a friend in the group who had moved away and come back for a week,
who has cherished Cake and her milestones as one of her own grandchildren,
who has shared woes of mothering with me, her own acquired nuggets of wisdom, her triumphs and failures and heartaches and struggles
who has opened up her heart to me of our shared traumas
and navigating through
who are loving grandmothers
who are loving mothers
who are harmful who are immigrants who are products of their violent pasts who are broken and jagged but still smooth and polished and beautiful and will cut you and then scorn you for touching the edge that was wielded against you in the first place---
the safety that has been built up over the years
the love and empathy and compassion
the free, untethered love that does not come with clauses or conditions
or wane like the tides and the face of the moon
Mama Lorraine strokes my cheek and whispers "beautiful girl," so soft, and i wonder if the words are really meant for me. she repeats them, rhythmically, petting me--loving me, i realize, and i can feel my body relax. i did not know i was tense, i did not know I was withholding my weight from her body, did not notice that although I slouched on the couch I still sat upright just enough; this tension melts away. I sink into her, the couch and our bodies shift slightly as I lean my head into her hand and close my eyes and let her lull me in and out of consciousness.
i consider the feeling of safety.
time is weird.
i am not sure how long we sat there.
not sure how the night moved from there; I believe it was just the after-dinner lull and I know we stayed up much later.
but long enough for my brain to connect these memories
to take note of the moments as Important
to keep bringing them back up to me,
asking me to Think About It.
i love Thinking About It.
i love Thinking About Everything.
i love Thinking.
as i had felt my body relax
my brain made sure to tell me
my normal response to touch
is to flinch
don't let them get close
don't let them near
this is also funny and ironic because Gage can absolutely tell you I am a leech, suckered onto him, needing to be reminded that i am needed.
i like touch.
I like platonically holding my friend's hands, and hugging them often and a lot and leaning on each other, resting chins on shoulders
and plopping butts in laps when there are plenty of open chairs available
so perhaps my "normal response" isn't to draw away at all.
maybe drawing away
or the wall of tension put up prior
has been built up over time.
and as Mama L drew me in, never needing an explanation, never demanding a reason as to why i dissociated in her house in the first place, never accused me--of what, i am not sure, but the fear of accusation, it is there and it is real, i have been taught to feel guilty, i have been taught i will be punished for outwardly showing anything other than overt happiness--
as she brushed my cheek, she brushed away the wall, let it crumble as though it was nothing but dust in the first place.
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thursday was injection day.
(today is wednesday; i've lost an entire week.)
i didn't feel good about my last blog post after publishing it. it felt too raw, too ugly, too early in this blog's existence to be revealing such thoughts. that was tuesday evening.
but later in the night after I'd fallen asleep, i got a message, a long one, one confiding in how my raw, ugly words made them feel, and that made them uncomfortable, and they agreed with me that that was a good thing. please don't stop writing, they asked, unless of course, you want to.
i don't want to, i ensured them.
in the morning, i got another message, another long one, of their medical trauma by proxy. caregiver trauma. it broke my heart a thousand times over, the parallels we shared. i hated it. we hated it so much together.
(one day, i will talk of my husband's caregiver trauma. when the time arises. with his allowance, of course.)
and then, a few days after injection day, Amanda Fucking Palmer, a goddess whom I adore and aspire to emanate in my own way, fucking complimented the blog, this blog, my blog. the post i felt ugly about, the one i felt was too raw and too much, that is the one she started with and she likes my writing and --
i'm fangirling 110% here, but I have loved AFP since i was fourteen years old; she helped form me as a weird, thoughtful, challenging, creative teen into adulthood. I fell away for several years, just as life draws you to different paths, but I found myself immersed back in her wildly amazing world about a year ago now, and she has only continued to pave the way of all the things I love and take pride in and fuck she's just amazing. Check her work out, or if you are a Patron of mine, you will soon be getting some exclusive posts with more details about her work and how formative it is, my recommendations, etc etc, through my Patron-only newsletter, Conscious Consumption.
so... i didn't feel good about the post. but i feel validated. and that's better. because sometimes doing the good, or best, or right thing, feels shitty.
(that isn't to say that if you're feeling shitty, you're on the right path. lol. you can feel shitty because you're fucking your shit up too. trust.)
but, you can be doing the right thing, the best thing for yourself, and feel sadly about it. or remorse. or ugliness. it can feel bad and still be what is in your best interest.
trying to make things okay and feel good all the time is more of the toxic positivity bullshit i am done with. and you should be done with it, too.
thursday was injection day.
and friday, i slept. aaaaaall damn day.
then saturday I went too hard; it was a really good day,
but sunday made sure to punish me as a result. and I slept.
and i tried to work on this monday, and I don't know where the days went.
this is what injection days do.
i am fortunate to have friends who i can be honest with on my worst days. who are honest with me about their hurts and fears in return, when the times arise.
and so i am honest with them.
how are you doing on spoons?
not good. the night before injection is spent crying that i dont want to do this anymore.
"it's just a little poonjie-poonjie in your bootie!" gage had tried to make light of the situation. it's how we process trauma, I wrote before, we make jokes.
and usually, jokes work.
but sometimes, they don't, and I had wailed back "but it's not just that!"
and he whispered softly "i know,"
as i cried.
injection day, I had planned on leaving right after I saw Cake off to the bus, but that didn't happen. I had planned on leaving early enough to stop and get my favorite overpriced mixed coffeedrink, and then maybe have time enough to get my labs drawn, then go to oncology, then pop upstairs for my infusion. Which as I type this out, is laughable by itself, I couldn't have done the labs beforehand, but I digress.
my oncology appointment was at 9:00am.
I called when I left at 8:50am letting them know I'd be fifteen or twenty minutes late.
but that's why drawbridges exist, i think; to add insult to injury? it's my conclusion when I arrive at 9:30, puffy and out of breath.
but my nurse is lovely and we talk about movies, she recommends titles (emphasizes the importance that I see Crazy Rich Asians; Last Christmas which includes two cast members from CRA; Gifted, just because we like movies and it's good).
i always feel out of place at the AIC; not old enough, not sickly looking enough. But I am here. and so is she. She leaves shortly after I arrive, but i am excited and awkward enough to scribble my name, blog, and phone number with a little note to her before she leaves. She texts me back. we banter and joke lightly about our shitty ass bodies and their betrayal. i adore her. she is 28.
i haven't answered her in a few days. shit.
i ghost people often. it's not intentional; which i think technically means it's not ghosting.
i'm low on spoons. and i want to answer fully, so i wait until i have more spoons.
but I also have ADHD. like. .... y'all i cannot wait to start talking to you about ADHD.
so i forget. and when I have more spoons, I occupy myself with all the million things I need to get done, all the things that have also been piling up.
and then it is not until i have depleted the spoon stash and snuck one from tomorrow that I remember all my texts and messages
and i scroll them and realize they all require,
they all deserve
so i rest. and it repeats.
the blog feels much the same. i am leaving in seven minutes to take Cake to swim lessons. I am tired. I am overflowing with things I want to share, and write about. I am terrified of overwhelming you with posts. I am overwhelmed by my thoughts. They're good though, like, there's good stuff in this head.
Cake keeps interrupting me. I want to cry and scream. I finish typing my sentence, take a breath while murmuring "just a second" instead. Answer her question.
She's already back.
.... when I am back tonight, I will write.
my oncologist wishing me luck in finding a better primary care physician
calling a family member out on their toxic behavior until they cried so hard they threw up
the pit of snakes
the fact that being terminally ill does not qualify me for social security/disability/financial aid, but being terminally ill also makes it impossible for me to work.
and the underlying societal issue that keeping cancer patients alive is not a lucrative business model
trying really hard not to scream in your kids' face when you are definitely a screamer and a crier and that does not make it okay for you to do those things to a child
that's just.. this week. i need to write more.
do you guys... want to hear more?
hit me up. drop a comment below. thank you, I love you.
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"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.
i still haven't written the story out. i don't know how to. in ways, i am maybe afraid to.
this also makes no sense, because i have written it, many times: in 500 words or less in an application letter for graduate school (a successful endeavor), in facebook groups that are seemingly unrelated but i swear to god the story it crops up fucking everywhere, following me always. it's some horrific shadow leering behind me and i cannot escape it, so i have merely learned to grab the story by it's cold wrist and drag it into the limelight and show it off--look! look at my trauma and how it cannot hide and therefore shame me!
but 500 words or less are so limiting. it's the skeleton of the trauma. the social media posts; cumulatively, there's so much raw data there, sure, but those words, those thousands of words, have been spread out over years. they flesh out the skeleton, but they're disjointed, in ornate canopic jars spread throughout the ones and zeros that build up the internet.
how do i collect the pieces and put them together to bring to life the story?
that even still would do no justice to the story;
what if I should bring the skeletons and organs and thoughts together,
flesh them out and prop it up
into some grotesque monster mary shelley once wrote a story about?
i have also told the story many times: a casually abridged version when meeting perfect strangers, detailed moments fleshed out during therapy. i have laughed and screamed and cried, all aloud. I have felt the story over and over, picking the scabs before they are ready, letting the bright red memories spill, watching the scab grow smaller and smaller but watching the scar remain, and truly, can it heal while I continue to pick? I guess so. Everything heals eventually. (or kills you).
i am sad to admit i had a miserable holiday this year. i don't recall my last happy thanksgiving. that's sad, too.
i used to love thanksgiving. it was my favorite--beyond halloween, beyond christmas, was my dad's thanksgiving. in my teenage years, after my dad retired from the marine corps and had a rather comfortably-paying government job, we had a huge two-story house in rural maryland that screamed of gentrification of the surrounding farmlands. The house was made for entertaining, and entertain my parents did, but just a couple times a year. The Filipino-American (Fil-Am) community there is abundant; they raised me, and they took turns throwing parties--house parties, graduation parties, holiday parties, birthday parties, I don't know, it's like a mouse with a cookie. If you give a Filipino a reason to throw a party... Thanksgiving isn't a Filipino holiday, but that doesn't stop them. My dad, one of the few white guys of the bunch, relished in hosting Thanksgiving. It was a huge deal for him. Each year, he planned a new and exciting way to present his turkey; different brines, bakes, broils, fries, seasonings--
but then, he died. in july of 2016.
2016, we must have spent at that giant, hollow house (my mom lives there still), and gage made a turkey. i don't remember it, but facebook memories and gage do.
2017, at a friends. i remember my mom came down.
2018, i was in the hospital.
in the hospital, sobbing and watching the food network because i couldn't eat anything, my nurses begging me to change the channel or turn the damn tv off if all you ever want to watch is food network to torment yourself mrs wilson
they asked me why i'd watch. i love food, i'd smile, thanksgiving is my favorite holiday, i'd explain, i can almost imagine what it smells and tastes likes and i miss it, and the tears would stream down my face as they brought in another banana bag, another stinking yellow sack of TPN, of liquid nutrition that smelled vaguely of french fries as it destroyed my veins, and i'd murmur that the first food i'd eat when i was allowed was a goddamned cheeseburger. not even a good one, a flat, shitty, greasy slice of fast-food that will surely tear apart the sutures the doctors are so carefully monitoring.
my therapist recently asked me why i watched, too, when I recalled this memory. i gave him the same answers. and then i stared beyond him, into the ac grate just above the floor, next to the bookshelf. this is the place i am comforted, the vacant space i address when i can't bear to see the compassion in his eyes. i cannot allow myself compassion when i relive the moments. i am allowed it, i know, but i have to make myself suffer, for now at least, i have to hurt just enough to be brought back.
so i tell the grate, instead of Norm, that it did also make me miserable: to watch cooking shows, to send myself the links to all the recipes i would not make (and some of which i would, eventually, months and months and months down the line...). Yes, it absolutely destroyed me, to obsess over food when I had not eaten in weeks. It had been about four I guess, by Thanksgiving. I was supposed to be home by then. I was supposed to be eating by then, although we had discussed how I had to be careful with what and how much I ate at thanksgiving that year since it would be so soon after surgery.
thinking of this brings a wry, twisted, pained smile to my face. i am still to careful about what and how much I eat, every day. i am not always. sometimes i do not care and i eat with reckless abandon, to be sent to my knees howling an hour or so later when my body realizes what I have done to it. sometimes, i do not care, and i do not eat, and i abuse my body, because eating will bring it's own pain and suffering, so i simply do not. sometimes, i take my digestive enzymes. synthetic enzymes, little seed-looking pellets inside a capsule. four with each meal, two with snacks. usually, i ignore them. it hurts. i hate them. i hate this stupid fucking body that cannot digest it's own food.
and then gage reminds me that it is not stupid that i had organs removed and my body cannot function properly without all of it's organs.
like when i make the comparison of denying a diabetic their insulin, everybody loves that analogy, would you ignore your mental health, no you don't, so why are you ignoring your physical health and i don't know really.
another canopic lid i can twist shut before storing this jar on the shelf.
i'm ashamed to admit that for over an hour this thanksgiving, i locked myself in my friends bathroom and cried. why am i ashamed? i am holding tight to my trauma's wrist as i weep in the bathroom. the cold outside was too intense and made my whole body hurt. the adults were outside and inside and outside and i could not do it and i excused myself to the bathroom, sat on the lid of the toilet, and sobbed. the heat was on and it was warm and comfortable, alone, quiet while the children laughed and played in bedrooms and the adults laughed and played outside, the thump, thump, thump, of cornhole and laughter outside the bathroom window. and i would reign in all this sadness, the lack of my dad, the last several years --
i have been going back and forth, trying to remember. Gage was in California for one, my brother and "sister" came and we had "friendsgiving" one year and i don't know what year that was, i guess last year.
sometime this last october, as i worried about what my third trauma-month anniversary would look like, i whispered to my therapist, i don't remember last fall. "I do," he had replied, and his voice was so low, so sad, so graven.
-- the feeling of loneliness in a house full of people who love me, and i cried over that, because knowing you are loved and yet feeling so, so totally isolated in your trauma, it is so lonely. it is so unloving. you can know you are loved, and feel completely devoid of love. you can, because i did. and that is it's own shameful admittance, because the most horrific thoughts (you know the ones) (...or do you?) were there, screaming in my face as the tears plummeted down.
But every time I took a deep breath, shut the thoughts up, cleaned my face, and attempted to stand and rejoin the party, I'd struggled to get back up off a creaking toilet lid. The full-body-tenseness that comes from baring down, hard, to forget the pain, comes with it's own problems, like becoming a rigid stone. My face aches, and my back aches, and my legs and ankles and toes my fucking toes hurt from baring down on them all day what the fuck. I untense my toes as i type this sentence, multiple times. Multiple. Times. I cannot stop from clenching my jaw, and my shoulders, and shoulder blades, and my legs are locked and it all fucking hurts but if I release my body from it's compression--the hips, my hips are screaming and then the legs, the legs they are weak and they buckle under me even as i stand up and grab the sink and stare at my puffy red eyes that have been crying.
And then Gage is there, apologizing because he thought i'd taken my iPad and audiobooks onto the couch the whole time (this makes complete sense, because I packed my whole #yourfavoritecancerbitch day-bag, which also includes a heating pad, keyboard, paperback and aaaaall of my meds); he brings me xanax (which I chew up through its bitterness), and lidocaine patches (for localized pain, which he applies to my shoulder), tylenol (which he congratulates me on admitting I need, but I ended up not taking because... i dont know, in some ways, i have to suffer. still. to this day. what if i become addicted to tylenol like that time i was addicted to oxy, and the surgeons are all telling me it is time to wean off the oxy, it has been too far post-op, but i am screaming in pain because oxy doesn't even touch this ---
that's how i came into medical cannabis. it helped me wean off of oxycontin. it helps me digest food to this day. it helps with pain management, every day. on the days that the cannabis doesn't help as much, are the days i admit i need a tylenol. maybe half of those times, i will actually take it.
another canopic jar for you, my friend, sweet reader. please hold that one tight so i can come back to it.
eventually i rejoin the household, but it still doesn't feel like thanksgiving.
i still feel lonely, in my ill body, because now i have brought attention to it and i am hyperaware. and i am not mobile. the children and the adults are mobile and move freely as the night does, and i do not hold this against them.
but i think of the plans that i tentatively made with my chosen sister, to join her at katsucon in february, and she is delighted and enthusiastic and so am i in that moment, but now i wonder, how can i possibly enjoy a convention without a caretaker? I had dreamed of a child- and spouse-free funtime with friends, when is the last time I did that? but i cannot ask my sister to be my caretaker to an event i invited myself to. and i cannot get off a toilet seat by myself on a bad day.
i think of thanksgiving 2015. my dad's last thanksgiving alive. i do not remember it. I look through my Pictures drive on my computer. it reminds me that we spent in in Florida, with my grandmother, my dad's step-mom who, upon my dad's death the following year, I had murmured "there's no legal- or blood-tie to us anymore." I had said it in a type of awe, in love, i must emphasize. I was remarking the incredible durability of the idea of family as people define it. She hated the words, but appreciated the sentiment. "Oh honey, don't say things like that!" I miss her now. I should call her soon. Hi gramma, if you're reading this. I love you and I'm sorry I haven't called you lately.
I go back to 2014's pictures, but they do not reveal to me our thanksgiving plans that year. We spent the week before with Gage's sister, and the Christmas in our small rented condo, having just moved in two weeks prior my parents came down.
I can still hear my dad's voice announcing triumphantly in the Target aisle, "First stuffy from Papa!" as he waved the red octopus in the air, legs flailing wildly. It is his gruff voice, but it is also forced, warbles on a higher note. One of his vocal chords is paralyzed. He dubbed the octopus Octavian.
To this day, Cake brings me Octavian when I am crying and missing my dad. Or just, when I am crying, and she feels I could use my dad's presence. Without fail, the arrival of the red octopus stuffy and Cake's sweet little "Papa?" offering will elicit a happy, strangled-sounding cry from me, with love and sadness, gratefulness and anguish. He has spent nights at the hospital with me, nights on the couch, has appeared in my office at this desk that I am typing at.
i go back, year after year, until i reach 2008. it is as far back as the photos go, because i've lost anything older, and much is missing in the older photos i know. but i find no photos of my dad's thanksgivings.
this makes me feel sad, and this makes me feel nothing at all.
there are no photos I have available to jog my memories, my faulty, clouded memory; old ones have hard times resurfacing, new ones struggle to take root. memories are fickle to me, and it scares me, i don't know if it's cancer, or treatment, depression or PTSD or age or a combination of all of it.
there is simply a soft sad silence where my dad's holiday memories used to be,
a soft sad silence
where my trauma holds tightly to my wrist.
I wake up already feeling sicker than usual, and this is disappointing. I frown into my pillow. Why is this? My injection symptoms have more or less faded, the back pain hadn’t been so achy the last few days. And then I remember, and I sigh.
That’s right folx, I’m talking about menstruating today. Buckle in.
Eh, I’m kidding. I mean, yes, that’s what is going on this morning, but that’s not what I’m writing about at large. Let me clarify a bit more.
The odds are never in my favor. I am not saying this to complain, although let me be the first to admit I do complain, often and loudly. But it’s just, true.
May I present to you, the maths:
The odds are not great on any given day of any given month. And it’s just, this, forever. Every four, six, weeks, for eternity, until the flesh heap fails.
I fumble to call my husband midway through typing the above.
It’s the fourth or fifth time this morning, just a couple hours long so far, that I’ve had a wave of hunger grip tightly at my stomach, immediately overpowered by another, larger wave—a more physical wave that sits me bolt-upright and has me gasping little breaths. My mouth becomes hot and fills with saliva that I know if I swallow will produce vomiting. Do not, I instruct myself firmly. You will not vomit today.
I don’t often get hunger-pain messages; usually by the time I do I’m already shaking and well aware I need to eat because it’s been 18 hours since my last nutrition. They are often accompanied with nausea, though not normally as extreme as today.
The second day of your cycle is always the worst, my brain informs me.
How do I know that? I ask back. It feels familiar; maybe just something I’ve noticed over time? My brain doesn’t bother shedding any other insight.
I stare at my phone. I dont know what shop he’s in right now, and his cell doesn’t have enough service. I call the quarterdeck, and whoever answers kindly asks me to repeat what I’ve said. I take another sip of air, as deep as my shallow rib cage will let me--why doesn’t it expand?—and repeat. I am transferred; whether to the wrong shop or he’s just not there, but the next person asks if they should take a message or go get him, he’s in another shop nearby. I ask for him. A couple minutes. Gage picks up, unaware of who it is, which then catches me off guard, I’m not sure why.
“Hi, hi it’s me, I’m here.” Stumbling. Words are stupid.
“Ah—what?” I hear the recognition in his voice, he just hasn’t caught my babble.
“Hi hey babe it’s me and I’m here!” I pant in a short staccato. “Hey um how is work, like is work good, is work busy? … Yeah can I like get food delivered or do you think you can bring some home, can you leave?” It’s panicky, apologetic and rushed. I’m so sorry to inconvenience you with my inability to feed myself but everything I have looked at in the house is repulsive and punches me in the gag reflex, I would like to order an overpriced soup to be delivered to our door or if you could casually leave your career at ten thirty am that would be really cool hey thanks!
He doesn’t see it that way, I know this, but I do.
We talk about his work day and what option is fastest; I’ll order food for the both of us and he’ll come home after he finishes up some stuff so he can catch Cake off the bus.
I tell him thanks babe, love you, see you eventually, but somewhere in there I whisper too, “I’m sorry.” And then I am suddenly crying, shrieking how yesterday I did SUCH a good job eating, yesterday I made breakfast AND lunch and they were really really good but I wanted rice with my eggs so last night I set aside a breakfast portion of rice, just for this morning! And I cry, and scream about eggs and rice, and he is silent, listening. Present, but what can he do but encourage me to order the one thing my body has decided it will allow?
“I’m sorry, babe,” he says softly.
“Thanks, I know. I’m sorry. I’m not mad at you, I’m just… mad.”
I’m just, mad. That’s one of my common phrases, too.
The order arrives as I am still working, and while it was the soup I craved, I’ve become fixated on my half-sandwich in the time it took for it to arrive, and I am taking out huge chunks ravenously, immediately. I get about three bites in before realizing my mistake; take a fourth for good measure, and pack it up just as quickly, right back into it’s wrapper. Snug, so I cannot smell it, and push it far away, out of sight. Open the straw wrapper (shame), say a prayer for a the turtles, and sip the coffee to get the reminder of sandwich far away from me. You will not vomit today, I remind myself.
I head outside, smoke the remainder of my medicine from an earlier bowl. In short minutes, there is the ebb of relief, the sense of the nausea wave settling down and flowing back out calmly to sea. I am pleased, because I will not vomit today, not this round. And my face involuntarily scrunches up at the frustration I feel every time I acknowledge how well cannabis works and how much of a struggle it is for medical patients to get accurate, appropriate care, information, treatment … but ah Erin, another tale of a writing for another time.
I come in, calmly and easily sip up half of my soup, and feel full. Content even, I’ve eaten a good amount of food for a meal. Hell, I’ve now eaten a good amount of food for the day, by some of my standards.
…. It is half of a you-pick-two.
And it is monumental.
And stupid, and frustrating.
A fellow cancer patient said to me, “I don’t want to be strong, I want my body to work like it’s supposed to.”
And for sure, I’m writing about the worst things right now. There are the good days, okay days, the holy-freaking-fuck I did it! fantastic days, and the ones where you feel the best you think you’ve ever felt before, at least in this version of your life!
They exist. But the odds? The odds are never in our fucking favor.
this post was originally published on November 9, 2021 at 10:52pm, but was lost in a website transfer.
I am thinking of my weird-ass freeze-response. I have no other ways of thinking of it yet. It feels so … disingenuous? so clinical to refer to it this way, "freeze response." But I guess that's what this is.
I am thinking of a podcast where a spouse spoke of his ex-wife’s cancer journey; her changes in personality and life goals through her diagnosis and treatment, and how it eventually broke up their marriage. He didn’t hold it against her, he knew cancer changes things; that wasn’t the part of the story he was even really telling, it’s the backstory to his own he is about to share.
But what he says beforehand caught me when I first listened: something along the lines of, how you would think, or how many people are under the impression that someone who comes back from cancer, they would find the joy in life, but how she went the opposite—she went dark. Her mind took her to a dark place and the journey completely 180’d her.
It’s this thought that keeps coming back to me. Again, it’s not even the premise of the episode, but it really catches onto something into my brain. Because I too have “gone dark,” gone so deeply dark despite surviving cancer, whatever the fuck “survival” means. It hasn’t killed me, yet.
Don’t you have so much to be grateful for? the collective disembodied voice asks me. The monster of my own mind, or the one I fear others may wield above me. The one I shirk back from, close my eyes and fawn for without even realizing.
Yes, I do.
I am not dead, yet, which means I am alive, which means theoretically, I do have so much to be grateful for. And, I am.
Still. Going dark after you’ve been diagnosed with cancer, even after coming out alive, especially after coming out alive, makes perfect sense to me. Because we been ripped from our able-bodies, the casing that holds together all our organs and our mind, the one thing in the physical world that we know to be truly and absolutely ours, and it has been revealed to us that it cannot be trusted.
“I want to be one of those fishbowl heads, like in futurama.”
It used to be a joke between me and my oncologist.
Then it became a plea, then a demand.
I wanted him to do the impossible for me.
He’s a surgeon, fucking fix it. The entire fleshsack is ruined. Take the brain because that is the only thing good that is left, and stick it somewhere where the cancer cannot poison it anymore.
like this, but better because i'm not some shitty ass old white dude
That’s not true either though. It’s just my mind that’s worth saving. There’s a little bitty (probably)-benign microadenoma up there, in my pituitary gland. But that’s fine, some 20% of the general population actually has a microadenoma in their pituitary gland, they just don’t know because most of the population isn’t having their brains casually MRI’d every couple months. But I am. Or, I was at the time we found the fucker, but now I just have to have it done once a year. …. When was my last brain MRI? I think that’s overdue. I think that was due this past February. …. Why do I think February?
It’s not that I’m not grateful to not be dead yet. I’ve worked really fucking hard at keeping this meatprison bottom-of-the-line functioning, as has my spouse, my medical team, my friends and therapist. Lots of work has gone into me and I am grateful for it.
It’s just that it’s also really, really fucking hard to be okay when you really fucking aren’t.
There’s no okay after cancer, or terminal illness, or chronic illness or pain or ongoing trauma or whatever, fill in your blank. My baseline okay is “strugglefucking.”
I’m late to appointments because I underestimate the time it will take me to do simple tasks, like getting dressed or brushing my teeth. I shuffle around the house, grunting and heaving my admittedly pretty delicate frame around like it is a sack of earthy, soil-laden potatoes I’ve just brought in from the harvest. But instead it’s just a bag of my own bones, same ones I’ve been carrying around the last three decades so you’d think I’d have the capacity to do that much at least. But I don’t, I realize hopelessly as I am fluffing my pillows and pulling my quilt over my shivering, skeletal-feeling body at the end of each day, and am winded and wheezing just by the simple act of making myself comfortable. Every evening I lay heavily, panting, catching my breath before I can rest for sleep. Sometimes, my husband offers a hand tucking me in, but often I swat in his general area, insisting I got it I got it I can do it myself.
Other nights, I physically drag myself onto the bed, whimpering, crying a little as I ask him to please cover me up and whispering tearily I don’t want to do this anymore.
Those nights aren’t often, not anymore. And if I really think about it, I’m grateful just for the ability to sleep in my bed. That is another writing to come, later, when I am stronger. When I can put into language what it was like, having to re-learn sleeping laying down, stretching the too-tight, too-raw skin of my belly flat and allowing gravity to tug at my mid-line incision, the drainage tubes tugging, my IV beeping occlusion as I try to drape my arm around the IV port, laying hopefully for a just a few soft seconds before howling out in frustration, in anguish, in pain, and having my husband slowly, carefully, but still as quickly as possible lift me upwards to make the animal-like cries stop coming out of his wife. Guiding me back to the couch where I screamed, I didn’t want to sleep on the couch anymore – bile is rising in my throat and I am pushing myself currently because the words are taking me here, but I do not like it. Another time. I’m not ready for this.
And that’s fine, too.
He used to ask me what I meant by that, I don't want to do this anymore, I imagine worried that it was suicidal ideation. Not new for me either, not this far in my life, but certainly doesn’t make it any less frightening, any more livable for your loved ones to process. And in a way, it may be, could easily be interpreted like that. But it’s a lot… simpler. A lot less nuanced. Sure, there are days where by “this” I just want to scream and wave my arms wildly, gesturing at everything, but I don’t actually mean everything.
I just mean … this. This whole post, this whole ass predicament, this stupid fucking fleshsack, riddled with cancer, a genetic predisposition to monstrous little masses written explicitly into my DNA.
tumors just poppin out of my organs! like daisies!
I am grateful to not be dead, it’s true. I’m just also really tired, every waking moment, of feeling like I will never catch up, like I will never bounce back, like I will never be alright, or be well. I am grateful to be alive, and have access to adequate medical care, and to be eligible for treatments, and to have an incredible support system, and to be able to go to a therapist for an hour every week.
And also, also, I just don’t really want to do it anymore.
But, I will, because, it’s what you do with the shit platter that’s been handed to you and you’re starving just to stay alive.