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 overwhelming."
"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. 
and Homeschooling.

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.

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.

​new to the idea of crowdsourcing, not really sure what it's about or why someone would crowdsource?  here's a little more information :)

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.

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.

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.​