"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.
if these words resonate within you, make you feel, or encourage you to think more introspectively, consider becoming a Patron!
Your monthly donation supports Little Torch Blog and everything I am doing with it, as well as directly supporting myself and my family.
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"The gift that my Patrons gave me is freedom and relief. Freedom from the anguish of my financial strain. Relief from an expense that was not planned for, is not regular, but is very real. This month, a wheelchair rental. Perhaps next month, [...] my chiropractor."
The personal aspects of this: mental, physical, emotional work that goes in, I can roll with. Gage can roll with. We do it together, we grow and we stumble and fall and tug each other out of the mud, wipe the dirt from the other's face, and keep trudging. We do the work. We talk together. We go to therapy: apart and grow as individuals, then reconvene to share our growth with one another. I get real weird and introspective and wordvomit all over him, and on the off-chance i shut the hell up for two seconds, he provides his own insight. We can get through those aspects together: mental, physical, emotional exhaustion and rebuilding and time off. We can roll with it. I can roll with it (mostly).
I cannot roll with the financial factor. It breaks my brain.
Mmm, internalized late-stage capitalism, the healthy way to start your day!
Again, this is getting to a point where I... it's so much larger than this.
the cost of terminal illness. That's it's own Thing, it's growing in my mind, honestly so much so I'm terrified i don't know how to harness it with words.
But I'll figure it out.
This electric wheelchair. My Patrons, they paid for it for me. They made the smile on my face possible; y'all that is genuine relief and gratefulness.
Because when Gage and a park employee found me where I was resting, waiting for the wheelchair, and I signed the rental forms, it was the first time I'd ever rented an electric wheelchair. We did Busch Gardens two months ago, during Howl-o-Scream. We brought my personal wheelchair, which is not electric. .... there's a lot of hills and walking. It's a lot of pushing. We're going to rent an electric one next time, we decided. (Physical exhaustion, emotional guilt, mental gymnastics everywhere).
And I don't know why or how, but somehow the idea was given to us that it was only like, $25-30 for a rental??
it is not. it is eighty dollars.
... is this a lot? I feel like this is a lot. Part of me feels like, yeah that sounds about right, but mostly I feel like this is just asinine I am already strugglefucking to be here, I just really want to be able to have a good day with my family but the shows are all over the damn park and now it costs me an additional eighty dollars just to be able to move functionally. This is no one's fault. The park provides a service, it costs a fee. I understand all this.
But it is financially and mentally exhaustive.
Let me bring it back to the goodness, the light, the beautiful sheer excitement that brought that smile on my face. Because when Gage told me it was eighty dollars, and this was just the beginning of the day, we haven't bought the snacks and the souvenirs and what-have-yous, I gasped. I cost us an additional eighty dollars.
The day before, I'd had two new Patrons make pledges. And my payout at the end of this month, currently, will be at just over eighty dollars.
"My Patrons paid for my wheelchair," I say outloud,
and the wave of relief that I felt rush through me...
My Patrons paid for my wheelchair.
The gift that my Patrons gave me is freedom and relief. Freedom from the anguish of my financial strain. Relief from an expense that was not planned for, is not regular, but is very real. This month, a wheelchair rental. Perhaps next month, I'll return to my chiropractor for the first time since COVID first hit two years ago how-- and maybe he can get rid of the unnerving jolting sensations I have been experiencing nonstop, wave after wave of electrical buzzes in my body.
This month a wheelchair rental, next month the chiropractor, the next, continuance of care with the chiropractor. Or massage therapist. Or a lightbox for the crippling seasonal depression. The daily vitamins that seem to really help, but are more expensive because they're the gummies. But they work. But money. It's okay Erin pay the ADHD tax.
do you guys know this term? i love it, it's helped a lot with the mental gymnastics.
My patrons are gifting me the ability to stomach the ADHD tax. Because it's a real financial drain.
All the things that I could do that could help me in my fragile body, they have a financial cost.
But so does food, so does my daughter's extra curriculars, so does ordering delivery when I am too sick after grocery shopping to cook, and too tired the rest of the week still, and the pets need food and litter---
my house is a mess but i cannot physically clean. i could hire a house keeper, i could hire a cleaning service. that would be beneficial, and that would be another financial drain.
the gift that my patrons are giving me is freedom and relief.
thank you for your patronage.
thank you for seeing me raise my hand for help and grabbing ahold and squeezing me tightly.
thank you for hearing me point out the flaws in the system, and instead of saying "oh damn, that sucks," you said "here, let me help you with that."
and even if you aren't a Patron. this is a post to thank my Patrons, but it is not to make anyone feel guilty because they haven't pledged or whatever.
If you are here reading this, sharing this, feeling my words and experiencing the journey alongside of me, I need you here alongside me just as much, and I am just as grateful for you. Thank you, my reader, my friend.
if my words move you, if you find yourself wishing you could help in some way, please, consider becoming a Patron! Your monthly donation supports Little Torch Blog and everything I am doing with it, as well as directly supporting myself and my family.
new to the idea of crowdsourcing, not really sure what it's about or why someone would crowdsource? here's a little more information :)