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 :)

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
spoons.

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.

>>> if you are enjoying your time here, learning from what you read, and want to support me, become a Patron!  Plus, get exclusive newsletters and even mailbox goodies for pledging your support :) ​

later, in the evening, I stood up and bumped into  our kitchen table, letting out a weird yelp.  Gage quickly calls out if I am okay, to which I respond yes, the noise was more out of surprise than anything.

"more surprised than when you were STUCK IN A DITCH?" comes the fiery crack of a seven-year-old who is really learning the fine art of burning someone.

from the living room, Gage's howl of delight.  "Jesus Christ!" he cackles, "I can't wait to tell people at work how good she got you."

Cake is laughing, Gage is laughing, I am laughing, doubled back down on the floor where I had been trying to get up from.

"no," i admit, "nothing was nearly as surprising as getting stuck in a ditch today."

I've certainly hydroplaned before.  I lived in Florida for five years, lol.  And that's probably, actually, why we made it out completely fine and unscathed.  My friends all snapped back omg, how terrifying!  things of that nature, but honestly, it didnt occur to me how very terrifying that it was until after we'd stopped, I switched into park, cautiously took my foot off the break, and had turned back to look at Cake.  It was then, when we made eye contact,  that she let out a terrible, strangled sort of wail, and tears plummeted down her cheeks, and it began to dawn on me how very scary the situation must have been.  
​
Even still, in the moment, I reached back and squeezed her hand with a genuine, easy smile and calmly told her, "hey babygirl, we're okay!  it's fine, we're absolutely fine!"  Still not really registering for me.  (She is terrorized, and I am smiling.)

Then I turned around and simply paused our audiobook, which had been droning on while had been I staring blankly ahead thinking, huh, that was bad.  now what? and Cake had been sitting in silent shock.  I must have stared a little more then, I think; I have very vivid memories of the patch of grass in front of me.

"Mama."  Her voice brings me back, and I look up.

Passersby are pulling over on the shoulder lane, trudging down the steep ditch, their shoes sticking in mud and clothes soaking in the rain to be sure that I was okay, was I conscious, am I alone, is the baby okay?  do you need me to stay, have you called the police yet, can I call someone for you?

Overwhelmed with love and concern from absolute strangers.  Some had seen it happen, others saw my car on the side and stopped out of concern after the fact.   Kind, wonderful humans, stopping in absolutely miserable weather, honestly putting themselves at risk by slowing down to stop on such a steep curve, on a busy exit ramp, to check on me, to help me in any way they can.  They can't of course, not in any way that occurs to me, but I thank them all graciously, and I hope they know how much I cherish every single one of them, so deeply in my heart.  I want to hug them all, squeeze their hands and let them know it made my eyes well up in gratitude.

I call my husband, calmly telling the person who picks up, "could you let him know it's urgent?  thanks!"  that same blithe smile in my voice.  this should be a lot more upsetting than it is. 
I explain the situation ("hey, we're fine, but... um, i'm stuck?? in a ditch??"), and he is on his way.  He has a trailer hitch on that back of his truck, maybe he can pull me out.  Don't call a tow truck yet, okay? 

Sure.  I dunno the protocol for getting your ass out of a ditch.

Rather quickly among all of this, a VDOT employee pulls along the exit, cones off the ramp, comes over and lets me know the police are on their way, and am I okay, do I need assistance or to have a ride called for me?  No thanks, my husband's gonna be here in like twenty minutes.  The tow truck is coming and will get me out as soon as he gets here, usually they just allow you to pay and you're on your way if the officer okays it.  Oh okay!  My husband was going to try to get me out first,  is that okay?  Sure, if he gets here before the tow truck, we've already got him on the way, he works with the police and he's their guy, and we've got the road blocked off so we just gotta get you out as quickly as possible, et cetera, et cetera; my head bobs along cheerily in agreement.  That all makes sense, sure!

I ask him how he got here?  I didn't call anyone and was planning we'd figure things out if Gage can't get me out.  He explains that there are cameras everywhere so if there's an accident, someone will see, but he happened to actually see me spin off the road so he pulled around to help.  I am delighted with my new nugget of information.  I love asking people about how their jobs work, and thank him for helping me, for chatting with me, for taking care of us.

Cake wants out of her car seat and to be with me, but also does not want to actually move.  She is terrified, shrieking and swatting when I put out my hand to help.  I end up unbuckling myself, straining upwards, unbuckling her and then pulling her into my arms, over the center console, into my lap.  Soon, she hops into the seat next to me, and we continue listening to Neil Gaiman's Coraline.  I rewind a bunch, unsure of where we were when everything happened.  I've just finished listening to the audiobook myself, making sure it's something she could listen to without getting too scared, and all the words are too familiar. 
She complains about having heard this part already, and I squeeze my eyes shut and groan, shaking my head, shaking the thoughts into place. 
I fix it. 
She is content and listens, entrapped in Coraline's world instead of our own weird situation.  Good.

At some point the police officer arrives.  Cake looks stricken.
"Can you tell him why I'm out of my seat?!" she hisses, concerned.  "Tell him I was IN MY SEAT but I moved here?!"
I giggle.  I love her so much.  I reassure her she won't be arrested for needing to be comforted.

I  also call her school while we wait.  "Hey, I'm calling about my child's late entrance... well, no, I guess absence from school today.  No, no she's not sick, she had a routine doctor's appointment this morning and then I . . . crashed our car . . . oh but we're completely fine we're okay!  I just, yeah, I don't think we're going to school after this."  The woman is kind and understanding and we talk about the rain puddling up on the roads for a bit before hanging up.

​Eventually, my car is retrieved on a flat-bed.  I take Cake home in Gage's truck, and he brings my SUV home.  We relax for a bit; they watch TV, I work on my website.  We leave early for swim lessons, stopping at the local Girl Scouts store, picking up her Daisy Scout uniform pieces.  She is delighted, and picks out cute Daisy socks as well; Gage obliges her, and she is ecstatic.  We grab drive-thru dinner, and then she is in swim, excelling, a mermaid in her zone.

The two have made jokes about the ditch all day.  They don't hurt my feelings; maybe once, they would have.  It would have felt like an attack on my parenting, or a critique of my driving.  Really, it's just how our family processes.  We make lots of weird fucking jokes about our trauma; about cancer, about mental health, about careening over the interstate and into a ditch.  She's learning from the best, really.

Before she heads to bed, I squeeze her tight.  "How are you feeling?"  I ask her.
"Good."
"Your body doesn't hurt?"
"Nope."
"How about your head, how is your head feeling?"
"Fine."
"No, I mean, your heart, your mind, how are you doing?"
She thinks on this for a little bit, understanding now what I am asking her.
"You keep saying it was slow, but it wasn't slow, it was really fast!!"  She begins crying again, and I scoop her in tighter.  
Gage and I explain to her what that means; she's certainly heard us relaying the story, my recalling the details.  That just because a car is going slow for a car, that it is still going incredibly fast for her tiny body; a car driving ten miles an hour is nothing, but a human being running that fast is extreme.  How seeing the ground come up at us, seeing our car dipping at such a sharp angle, is not anything she has ever seen before and I hope she never does again, and that is an alarming thing to process, too.  We explain how it could have been so, so much horrifically worse--if I had pulled the steering wheel too hard in response, we could have spun out; had I not steered enough: fishtailed back into traffic, we could have hit other cars then.  Cake gasps in realization.  We talk about how fortunate we are that there is negligible surface damage to my car, and how if we had been going just slightly faster, or had hit a guard rail just beyond or before the area we went down, there could have been much more damage, or we could have flipped.   It was bad, and scary.  Yes.  Those scary feelings are okay.  But also remember, you are safe.  We talk about car seat safety and testing., how no matter the situation, that cars eat would have hugged around her and kept her little body safe from harm.
This all helps, it seems.  I hope.  She says it does, but in her uncertain way that reminds me so much of myself: overthinking, still mulling it all over, unable to put the feelings into words at such a small age.

Really, overall, I'm really quite proud myself in the of the situation.  It sucks, for sure, lol.  But also . . . shrug.  I did the best with the situation at hand.  I felt the car rising above the asphalt, levitating on the water.  I knew we were leaving the road before it happened, knew my car was spiraling much too tightly for the turn and there was no correcting it; the safest place for everyone was for me to carefully guide the SUV into the grass.  I didn't panic, or scream, or cry.  In the aftermath, I didn't dismiss my child's very valid fear to make myself more comfortable, nor did I let her feed into my own worries and exacerbate her fears (...to make myself more comfortable).  
​
Part of me figures it's because I've just been dealt so much extraneous bullshit, I don't have the energy to get hung up on how scary it was or how bad it could have been; I mostly come away like, well, that sucked but it wasn't the worst thing that has ever happened to me, huh.  Lame way to spend the morning.
And I don't think that's necessarily a bad thing, just an observation.