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1/31/2022

counting the wins

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"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."
Picture
Benvolio, the goodest therapy dog, modeling my jacket and scarf.
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.
Picture
Picture
piecing the quilt top and awaiting AFP's livestream. we created art in parallel.

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1/5/2022

mandrake roots

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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.
Picture
Source: @thecancerpatient
There is a pause as she works on something on her end, entering my drink, and in the lull she asks me "so, how are you doin today, you havin' a good day?"
​

"Ah--oh, uh, no!  No, I really haven't!  But you--talking to you!  You're, you've really cheered me up, you've made it a lot better," the question catches me, and I start off chipper, mirroring her; it had meant to come out as a thank you for being such a kind soul.  
But my voice is faltering as I blabber on, and the whole wave is just slamming to the forefront of my mind.  



​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
Picture
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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1/1/2022

to end the year: one about parenting

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please read the Trigger Warning page if you have not yet had the chance to <3 
TW for this post: self-deprecating language

it is new year's eve.
the day begins simply, as all mornings ought to.
Cake wants to paint her nails, so I tell her to go for it.  She sets up shop on the parlour room floor, which in retrospect is the first mistake, but she follows me throughout the house, and this is where I am.

Kids follow you, fucking everywhere, back and forth, for all eternity.  And it's maddening, really.  Get out of my ass and give me space for fiiiiiive minutes, please!  But if you stop and consider the why, it makes perfect sense.  People, as a whole, are communal.  She doesn't necessarily want me to sit down and paint her nails, or paint mine with her.  She'd be delighted for me to join in, sure, but it's mostly just, mom is in the parlour, shuffling around in the mugs, grinding coffee beans, turning on the record player and thus, this is where she wants to be too.
I'm sure reading this, it makes perfect sense.  But how often do we stop and consider this, truly consider it, from the child's perspective? Particularly in the moments where we are so dang frustrated and need space? They just long for company, and parents are the best company they know when they are so small.
I wonder too, when does that fade?  How long does that last?  My parent(s) were/are  not my preferred company.  My spouse is, personally.

This is fine though, because it is a new morning, a bright new day, there's a latte in my hand and Cake wants to put on her Cranberries album she got for Christmas, and I am happy to share our newfound love for vinyl together and teach her to use the record player.  It is not grating, it is endearing.
It is about perspective.
Picture
There is a clattering.
"What the--??" she says, and looks down at our feet. 
There is red nail polish, everywhere.  Spattered where her make-shift station is, spiraling out in wet webs, oozing from the bottle that had bumped her foot and gotten her attention.
She is blurting out apologies, and I am at first, initially, angry.  She has been negligent and now there is the reek of cheap polish overwhelming us and a mess I will have to clean up--
--but it was an accident, and there are two cats and two dogs ambling about, and the youngest furry monster, our eight-month-old black cat Brisket, is darting around like a fucking lunatic, so I immediately reign it in, and am soothing her, holding her hands gently and telling her, it's okay, it's just an accident, accidents happen!  We can clean this up, easy day, let's find the acetone and cotton balls, I'll show you how.
I want her internal voice to be compassionate.  I don't want her to have the one I have, the one that screams and berates me, reminds me I'm a fucking idiot, I'm a mess, this is why I can't do things, this is why you suck Erin.  I do not want that voice to be in her head.  It already is.  She is an anxious person.  She is my clone.  I love that about her, I hate it beyond all else for her.  It sucks, being in your head like that.  So I try, so much, to be the gentle parent she needs, the gentle parent I needed.  Parenting my child has allowed me to re-parent myself, in so many ways.
​

We clean the mess. 
I love doing nail art, so I've got all these extra goodies to make my home-manicure as bougie as I can.  I have this neat stuff called Acetone Antidote from an indie polish maker, Baroness X, that is an additive which adds restorative oils to your skin and masks the chemical stink with fantastic scented oil blends.  I mix the Pistachio Macaron scent into a bottle, and it makes the cleanup less unpleasant.  I show Cake to clean in small circles instead of smearing the mess side to side, and she is ecstatic with how good of a job she's doing cleaning up.  With the power of our ADHD Hyperfocus™️ combined, we scrape the polish out of all the tiny grooves in the luxury-vinyl-planking.

This was a Good Learning Experience.  I handled my own frustration, I eased Cake's, the mess was cleaned quickly and I am pleased I have Acetone Antidote and vinyl floors; earlier in this year, Gage and his dad refloored our house, this room used to have a very janky DIY excuse for "hardwood flooring" made out of splintering 2x4s from a previous owner, that would have been an impossibility, woulda just pulled the varnish right off the floor.

In the afternoon, Cake wants hot cocoa, and I oblige her.  She picks out a mug, but instead of one of her own, she grabs one of mine. 
​
It is my favorite mug: a large one with glittering gold and black bees and large pink and gold flowers that reminds me of my days as a strike-off seamstress. The mug is probably about five years old; it is from a friendship, a work-relationship, that no longer exists, from a company that went under shortly after I had bought the mug.  She had been trying to expand her fabric shop and started offering other items with her fabric designs on them; I had specifically requested she list this bee-print because I would not wear gold and pink fabric, but I will drink my coffee from this mug.  
Nothing about this mug exists anymore; I think it is the only one in it's existence.  It is filled with memories.  I love the print, but more than that, I love the memories attached to this mug.  The way I had pleaded for the mug, the way my freelance-boss-ish had been delighted in my enthusiasm, listed it that minute, and I had purchased it right then.
Writing this now, I don't think she ever managed to launch that section of her website, her company closed before she had the chance.  She had opened it up early to her team of sewists so that when she was ready, we would be ready with physical items to show off, too.

But I didn't think of all these things, I simply tilted my head to the side and asked Cake, "Are you going to be careful?"
And she of course insisted yes, she would be, it's been so soooo long since she used this beautiful mug!

By the afternoon, my good mood has dampened.  I am agitated by everything around me for no (outwardly apparent) reason; I have too many thoughts in my head, phone calls I need to make, emails I need to check, appointments to make and commitments to follow through and--none of them need to be done right this second necessarily, but they all need to be done and it is too much and there is laundry piling up and the office is falling apart because my cats keep climbing into the fabric shelves and kicking the fabric out to make themselves more fucking cubbies, and litter I can feel cat litter crunching under my feet so I need to vacuum, I am trying to write, trying to schedule posts, trying to post to Patreon, and every time I get half a thought down, Cake is calling me, showing me something, asking me something, demanding my attention, requiring my assistance, I am trying to shuffle around the mess of the house in my ADHD-pacing-fog, what am I doing right now? I bark at her to clean up her messes, there's trash, empty Sunny D bottles and the wrapper of a meat-stick and her paper plate with crumbs that has tipped to the floor, clean up your mess, PLEASE!! it is not a request, it is a shriek.

I sink back into my office chair, plop my headphones on.
There is a shattering.
I turn my head, slowly, towards the the parlour room, where Cake stands, arms full of plastic horses.  Arms overflowing, knocking over the messes she had left out on the end table.  I stare vacantly, already knowing what just broke.
"I'm sorry, I'm sorry, it was an accident!" she says, but I am just... pissed.  Fucking livid, if we're being honest. 
I stand up, not hearing whatever she is saying, scoop up the pieces, snatching the one she has picked up out of her hand viciously.
I am aware that this was unnecessarily cruel, passive-aggressive, she is a child, I am an adult, it is just a mug.  But that doesn't matter, I am angry!  I take my stuff to the trash, look over the beautiful bees and flowers once more, then drop the pieces unceremoniously in.  I walk past Cake; I don't know if she says anything, if she looks at me.  I am angry, I am a wall.
Picture
"I am Jack's complete lack of surprise."
Like in Fight Club.  I am Jack's boiling point.
​

I walk past her and straight outside, to sulk on our front porch.  It is here where I consider why I am so fucking angry over an accidentally broken mug.  It is here that the flood of memories attached to the mug come in, what all the mug meant to me.  I am still furious.  She couldn't know what the mug means, she didn't mean to break the mug, but--
I am embarrassed to write this
I want to throw my potted plants next to me onto our walkway, I want to shatter the pots.  I want to hurl them at the tree before me and scream and rage.  I want to stomp and get in her face and tell her that if she would clean up her stupid fucking messes the first forty-six times I asked her, if she had put the mug away when she had emptied it like i had asked her to, this wouldn't have happened, she would have bumped her hip into the end table and said ow and that would have been it and i would still have my mug, it's just a 
fucking MUG Erin it doesn't fucking matter! but I am furious.
I am angry with myself for being so furious, but that doesn't make it stop.


When I feel I have been gone too long, I go back inside, but I am still angry.  I fold a single piece of fabric, sit down on my futon, and cry a little.  I can allow myself a little cry over a broken mug, and then I will feel better.
But I don't. I am still thinking of all the mean things I could do.  I want to walk over into our parlour room and start dropping mugs, her mugs.  What the fuck is wrong with me?!?

I don't, of course, but what the fuck, brain?
... this is why I need her to have a healthier, a kinder inner voice than the one I have.  A gentler voice than the one I am wrangling with, the one insisting that to make myself feel better I need to make her feel as badly as she made me feel.
​​This is ugly and horrific.  Who the fuck???  Treats kids?? That way?
Stressed out tired parents who are at their wits' end and not thinking rationally, really.
I didn't act out these thoughts, thank fuck, but they were there in my head and that was awful enough.
What about the times we don't hold strong to our resolve, can't work past our inner voice whispering cruel ideas?
It happens.  It didn't this time.  It doesn't usually.  I hope it doesn't ever again, but y'know, it does.

​Later that night, turns out.

It is evening, we will soon settle in to watch the Pete the Cat New Year's Eve special.  (It's really cute, btw).
I have abandoned the earlier attempt to rage-clean my office, plagued by the reminder of the laundry on the couch, and sat in the living room and folded it with Gage.  Decompressed, fucked off on my phone, finished some writings.
Cake is finishing up her chores, putting away the clean dishes. 
There is a small cry of surprise, followed by--once again--the sound of something breaking.

"I'okay!" she calls out, then frantically, "it was an accident!!  I tripped!"
I peer in and see one of my decorative pieces that goes in the parlour room, that has been pushed under the kitchen table since I decorated for Christmas and had no where to put all the usual crap, is broken neatly in half.  She is picking it up, along with a shirt, holding the shirt up and inspecting it.  "I tripped on the shirt..." she is saying.

And I am trying to reign it in but it is just flowing free-form out of my mouth: 
"Are you, in any way whatsoever, aware of your surroundings, at any given point?!"
She blinks, her face screwing up, "Y...yes, I think so..." 
"I don't know, are you, because this is the third time today!!" I am spouting off, frazzled, manic, close to tears myself because I am so frustrated: with her, with myself for being frustrated with her in the first place, yes it was three things all in one day and that is terribly unfortunate but they were all accidents--
which is what she is mumbling in between the shrugs and the i don't knows, it was an accident, she didn't mean to,
and I know this, and I tell her I know but she has got to be more aware of what going on around her!  What is a shirt doing in the middle of the floor, anyways?!
Gage's voice chimes in, the shirt is his fault, it got wet when he was washing the dishes and he just absently chucked it to the side and forgot about it there...
this makes my brain ache more, because whyyyyy,  but also because tripping on the shirt that shouldn't have been in the walkway wasn't her fault, but also how do you not notice a men's shirt just in the walkway how did you trip on that, 
and really, it doesn't fucking matter.

what really matters here is that i am losing my mind, on my child, over things that are relatively unimportant, for things that were generally outside of her control.  this is not the gentle and compassionate parenting I was emulating this morning.
this is the burnt-out parenting, the passive-aggressive internal voice parenting, the it's been two years of a global pandemic, I'm immunocompromised, and my kid is an only child who doesn't get enough social stimulation from her exhausted mother, -parenting.
This is not my parenting.  But it is how I am parenting right now, and it's not fucking cool.

The other day, I saw a really great thread about gentle parenting, about do-overs. 
​We talk about how I am sorry I lashed out (both times), how yes, it is true, I am angry that things were broken, and that it is okay for me to be upset, but it is not okay for me to make her feel badly, and continue to bring up her accidents after she has apologized for them.  Parading her mistakes over her does not help anyone: it harbors animosity, encourages fear from her mother, solidifies that voice in her mind I am trying to eradicate, the one that will remind her well into adulthood, if i don't quash it, that she is a mess, she is a failure, she breaks everything.  I don't want that voice for her.  I have that voice and I do not want it for me, I absolutely cannot allow it to exist for her.

After the Pete the Cat special, we talk about our year, the good things, the bad, the events, the mundane.
"I don't believe I've been admitted to the hospital at all this year!" I announce proudly.  We cheer.

I ask Cake how many teeth she's lost this year; she doesn't know, and we try to count, but this brings up how earlier this year, in May, she had to be sedated to remove an infected tooth.  They pulled another that was going as well, and a third one had fallen out during the process, it had been so loose.
"So there's at least three!" Gage and I say, encouraging her to try to count them, but instead she is making this horrific whining, gurgling sound, one of discomfort and general displeasure to the topic.  The sounds grates on us.  You can tell us you don't want to talk about this, you can express why this is bothering you, but please for the love of all that is good at pure do not fucking whine like that.
It is getting late, and all three of us are getting agitated with one another, but no one is willing to budge; we want Cake to reminisce with us, she wants to change the topic, we want her to learn to express her feelings, she wants to shut down and go to bed.
We try to get her to wiggle her loosest tooth, we used to love pulling our teeth out as kids!  Don't you want the tooth fairy to come and leave you money, what a fun way to wake up in the new year!
It's not that we're neurotic monsters who want to rip her teeth out; it's that she leaves them in so long that her adult teeth are coming in at odd angles, her teeth are overcrowding, and she needs to get those little baby teeth out.

But she is becoming more obviously distressed with the conversation, howling that awful whine, her little body becoming rigid, pulling away from us physically.
Gage calls her back in, wraps his arms around her, lays his cheek on her head while she stares at me, unyielding.
And I begin to ask her
what are you afraid of?  what is giving you anxiety?  why are you upset?
but she is shrugging, grunting i dunno type sounds, whining.
i try a different approach, yes or no questions
are you feeling anxious?
shrug
you do know.  you know things, sweet girl.  you know your feelings.  you know your heart.  are you scared?
she wavers her hand in front of her, which means "medium."
is it about your teeth?
nod.
do you feel scared about your teeth?
nod.
does thinking about the hospital make you feel scared?
nod.
do you feel worried that you will have to go back to take care of your teeth?
whimpers, a nod, her face twisting at the thought.
babygirl, i croon, that's okay.  that's understandable and fine.  it makes sense.  it makes sense to be scared.  that was a scary experience, and your tooth, that tooth hurt you.  it is understandable to be afraid of something that has hurt you.  

the infected tooth had caused her gums to swell up, an angry abscess she'd had to take antibiotics for because the surgical date kept being postponed, I don't remember why, I just remember the agony of working between the hospital, the dental office, the referrals from the dental insurance and medical insurance and fighting for my baby to get in and be covered, …how horrific that must have been for her.

You know, I tell her, I'm scared of the hospital, too.  I'm scared of going back, I'm scared every time my tummy hurts that I may have to go to the hospital.  it scares me, too.
Her eyes light up slightly, her body relaxes against Gage's and she sinks into his arms a little bit more.
But, I continue, we have to take care of ourselves.  I know you don't like teeth stuff, it scares you, but we have to take very good care of your teeth so that that doesn't happen again, okay babygirl? 

We all feel better after this; sad, tired, but better.  As parents (and I haven't really asked him, but we both kind of shared the silence together afterwards so I feel okay writing on the behalf of us both), there was a certain agonizing sadness about realizing that our kid has medical trauma, surrounding her teeth, surrounding something we thought was so mundane, indeed, even figured she as a child would think was fun.  We thought we were being fun, but we were hurting her.  This is horrific, because we should know better. Look at her mother, I am a posterchild of medical trauma.  How did we not notice that sooner?

I don't know.  But I'm glad we did.  It may have taken months, but we got here, and now we can work through it more.  We are learning the tools that we need to open up the conversation.  She may know her feelings, but she does not know how to put them into words, or how to form a conversation around them.  She is learning that, along with us, because we did not know how to do this either.  We didn't teach her how, in May, or in the following months after the extractions.  We did not teach her until the end of the year.  And it is not a one time lesson.  We will have to continue teaching her this, over and over, as we learn, as she learns, as we as a unit lay the pathways for communication, instead of building up walls around us, sequestering us from the paths.

​She heads to bed with peace in all our hearts.  
the parenting for the day ends here, but my evening does not.

Gage and I ring in the new year quietly on our couch, streaming the ball dropping from new york, toasting with our sweet rose champagne (which he gags over being too sweet, and I choke would be better if it had honey poured into it), then resume to chatting, playing video games, puttering on our phones.  Around two in the morning, we agree we should head to bed. 
I head into the kitchen, straighten up a little.  I pick a tupperware out of the fridge, nibble on a bit of cold ground beef from burritos the night before.

From out of nowhere, nausea hits me--hard.  My mouth immediately fills with saliva.  I chew the beef contemplatively once more... nope, definitely not working for me right now.  I turn to spit into the sink, but this wave is bad, I am breathing hard, my mouth hangs open, slack, bits of beef flowing out down a stream of saliva.  Hot.  I am hot, I am breaking out all over in a sweat, completely drenched.  I think quickly to myself that I need to make my way outside to throw up, the fresh air will help.

I hear screaming.  Shouting?  It's not shrill, just one long, anguished howl, rising in volume, in intensity.
"aaaaaaaAAAAAAAAAAAAHHHHHHHHHHHHHHHH----"

I am vaguely aware of my head jerking back, looking upwards, before losing sensation all over my body and meeting contact with the ground.
cool, sweet, ground.  it is a relief to my hot, flushed skin.

"What is it?!  What's wrong?!" Gage's voice is filled with panic, his feet thundering from across the house to where I am, it's near me now: "what's wrong, what happened?"
I can feel the sweat, pouring off my face, my arms are sticky and slick under my sweater.  I cannot breathe.  It's too hot.  I kick off my moccasins.  Still too hot, but it helps.  I have the moment of panic, is this it, is this how it ends?  will i make it to the ER? 

I realize my calves are seizing up, they ache terribly.  My throat hurts.  
"That sound..." I whisper, staring at my arms splayed on the ground before me, "that sound came out of me..."
"Oh babe," he says, touching me, "you're burning up, you're so sweaty."
I feel my torso pulling itself upright, my arms peeling the sweater and tank-top underneath off in one slick layer.
"You... left a puddle."  Gage says, and we gaze at the wet image of myself I've left behind.
"I soaked through a sweater," I mumble agreeably before laying back down.  "I don't know... what happened.  I don't know.  I'm just really nauseous.  I don't know.  I'm so nauseous. There was... something."  I cannot remember, but there is the thought of something, something had to have happened, I was nauseous because I was nibbling and there was something...  
​
the something evades me.  there is just fog in the whole moment.  I try to focus on the scream.  I had felt it rising in my throat, I think?  I had been... aware of it, growing stronger as... whatever that something was...  it doesn't make sense.  I don't understand what just happened, or why.  something​.  I'm just so... confused.

After eternity, or maybe just a minute, the extreme nausea and dizziness passes, my breathing regulates.
"You need a cool shower," Gage is telling me, coaxing but insistent. "I'm going to go get you a cool shower started."  the need to do something, the drive to help in some way, any way.  it is love.
I take the cool shower. 
It helps, a lot.

My therapist tells me there is a 70/30 rule.  If you're being a decent human to your kid 70% of the time, you're doing a good job parenting.  People make mistakes.  You cannot be the best parent, 100% of the time.  You just cant.  You will make mistakes, have moments of failure.  Give yourself a margin for error; 30% of the time, you're gonna screw up.  Try not to do it more than that.  And, if you are serious about gentle parenting, you will request a do-over with your child.  You will be candid about those times you screwed up, apologize, because all humans regardless of their age deserve apologies if you've screwed up.  So many of us were taught that grown-ups are right all of the time, just because they are grown-ups.  I'm a grown-up now, and I can say with one hundred percent certainty, that's bullshit.  Teach your kids that even you make mistakes, and that that's okay.  It's part of being human.
I'll suggest it once further: apply the 70/30 rule to every other relationship.  To your partner.  To your friendships.  To your parents and relatives.  Allow people to make mistakes, they cannot be present and perfect for you all the time, but don't let them hurt you, either.  Are they applying it back?

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12/26/2021

dissociating on the couch; when your body literally Cries for Help

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i type the title.  delete it.  type it.  search the definition.  i have to be sure. 
define:dissociating dis·so·ci·ate
​
Disconnection and lack of continuity between thoughts, memories, surroundings, actions, and identity.
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.
lol.
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
to myself
and to you
that there is 
some small
thin
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.

(block 1) [Aziraphale] There's a very peculiar feeling to this whole area.  (block 2) But its everywhere. All over here. (block 3) love. (block 4) flashes of love.
Good Omens, Season 1, Episode 2
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.
Picture
Lo, this gorgeous Southern Maryland delicacy: a crab-shaped bread absolutely crusted in Old Bay, which was then sliced and slathered in crab dip.
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.  ​
Picture
"One last time," Ryan wheezes. "One thousand more times!" Cake counters in delight. I have to remind her she cannot play airplane if she kills her uncle.

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
just so
long

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.
dis·so·ci·ate
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.
​
it's scary.

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 concepts

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,
not time.
in safety.
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
freely,
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
painful
mothers
​
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

draw away
pull back
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. 
Picture
Papa Joe was so delighted that we obliterated the first crab, he went out and got another one when we came back the next day.

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12/14/2021

the first gift my Patrons gave to me

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🎶 on the first day of christmas,
my patrons gave to me
an electric wheelchair and a day that was guilt-freeeeee 
🎶

I have incredible, immense guilt about being disabled and the burden it puts on my family (re:Gage, specifically).

I'm gonna unpack this briefly, it could be (and I'm sure at some point, will be) a post on it's own.

There's many facets of being chronically ill; there's no respite. Not for the person who is ill, 
nor for the caregiver. Neither one of us can help or change the fact that I am sick. No one is to blame. There is no reason for it other than faulty genetics and no option other than to live with it as best as we can. So we do.

But that does not mean it is not exhausting, and draining.

Draining: mentally, physically, emotionally, financially draining, to be ill, to take care of someone who is ill. It's no one's fault and we roll with it.
"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.
Picture

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).
PictureCake snapped this picture while waiting for Gage to come find us. There are also several pictures of sheep's butts; you can see the shadow of their fence behind her.
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.
Thank you.


(like yeah  if you want to get into like the sematics about it, did they specifically pay for the wheelchair, nah not technically.  That went onto gage's card, whereas i won't receive my patreon payout until the end of the month, so the money technically doesn't exist to me yet, and when it does, it will first go into the accounts of the creators I am pledged to, and then it will go into my account, not the one that gage used to pay for the wheelchair.  ​but meh like i said, sublantics.)
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.  ​

Become a Patron!
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.
What is Patreon, Why support?
new to the idea of crowdsourcing, not really sure what it's about or why someone would crowdsource?  here's a little more information :)

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    Author

    Erin is a 31-year-old bi-racial queer woman living with stage iv neuroendocrine cancer; she has been with her husband for sixteen years, and they have a seven-year old daughter together.  She approaches the world through a sociological lens, and writes about her experiences in terminal illness, parenting, love, and friendship; she strives to speak to the connectivity we share in the day-to-day wading through of everyday life.

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