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 :)

"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.

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.

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.

​​if these words resonate within you, make you feel, or encourage you to think more introspectively, consider becoming a Patron!
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