Making a Happy Holiday

Building Joyful Memories with Nothing but Pocket Lint and Hope

Our family has been in struggle mode since my health declined to the point of no longer being able to work outside the home, in the spring of 2015 while pregnant with my last child. 

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Two pregnancies basically back to back decimated my already declining health. The years since then have had a lot of ups and downs. Financial valleys in which we were literally saved by an online community we are so very blessed to have.

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2019 has been relentless for us and our entire extended community, medical and dental emergencies, surprise bills, predatory fee practices biting us again and again, on top of the death of my little brother have completely taxed us this year. 

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Likewise, so many of my friends, chosen family, and beloveds have slowly slid from struggling to live, to struggling to stay alive, this year.  

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That meme 10$ we have been passing around has become 5$ then 2$ then .57¢

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A crisis is brewing in our communities, what happens when none of the people who care are able to help, and those that could help have turned their faces away? 

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We all know what is brewing there. We are expected to fight our hardest to avoid going over that cliff, but never given the tools to stay on solid ground. 

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So things have been in slow slide mode, stable but always fading away.

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still the holidays were looking ok, broke, nothing spare, but ok, until a temporary financial crisis took what little financial stability we had for two months. 

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Two months

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We should be getting back on track by mid to late January…So useful for Yule, right? 

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*grim laugh* 

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So I’ve been thinking about ways I can set the mood, give my kids a happy holiday, with absolutely nothing. 

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Hey necessity is the parent of invention, right? 

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The first thing I want to do, is put up the giftmas tree sooner rather than later and keep it up longer. I think this weekend might be perfect for that. 
Then I think every weekend, we will try to do a simple holiday craft and/or make a stove top/no bake holiday treat.  

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I also want to try to take more time to go to free-ish fun like libraries, parks in warmer days, and getting out to take advantage of our membership at the children’s museum.I

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We can watch silly holiday specials, read some holiday themed stories as well. 

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Of course even a lot of those things cost money or require we spend money on transportation or food to partake, it’s never ending. 

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 I am hoping I can do one smaller thing a week between now and late January or early Feb, we can make some memories worth having, and minimize the financial and emotional impact of being in crisis during the holidays.

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May the odds be ever in our Favor.

All This and My Bleeding Heart too

​I want to write a beautiful poem steeped in this exquisite pain

I want to run tender fingertips ever so gently over this perpetually burning skin

Nerves screaming across every time and space

Warning of things to come and things that once were

I want this sweet filigree desperation soaked body to radiate this misery into a most subtle and decadent dispensation

My heart, still beating, in eternal offering to you

Because I have nothing left inside this dying storm 

Because I am effervescent 

Because I love you infinitely

Because we live like this every day, neither pathetic nor inspiring  

Because we are art, beauty, and radiant golden bliss

Because we are

Because I can

Phase-Shift

And Now Back to Your Regularly Scheduled Program –
Hopefully. 

I am not sure where I am at right now in my head or in my body. 

I made a new friend, autilove, queer platonic something or other, I don’t know how to define it, I never do.  For the first time in a year I’ve been able to connect with someone. It’s really nice. 

Feels very human.

Que the PTSD telling me I don’t deserve human interconnectivity, that I am a burden, obligation, annoyance…a lifetime of gaslighting does not very funny things to your perception checks. 

But I’m doing all right with managing my baggage. I think. *laughs* 

In the last week or two, as the weather has cooled off, I’ve had a lot of flare symptoms surfacing again and it’s been scaring me to death. 

It has been two years since the last time I had this level of wellness, which is no where near 100%, but maybe 30-40%? This is a huge improvement over the 1%-15% I’ve existed at for the last two years. 

So I’ve decided for right now, I am just going to feel infinitely thankful for the last 8 or so weeks. 

To be very clear, I don’t say that as some good, inspiring disabled person narrative. Fuck abled people who expect us to suffer with a smile, no this is all for me.  

I have been living in a miserable pain, acute depression, and fatigue fugue for 2 years. 

Two years

But this summer I got a couple months off. It’s not much, it’s much less than I’ve had in the past. But it’s been something, and if something can happen once, it can happen again.

For now, that’s enough. It has to be enough. Hopefully it will come again. 

Somehow I need to find some sort of peace in myself, with myself, for myself. 

I can be enough for me

I am enough for me

You are enough for you too, I promise.

I hope you and I both are both able to continue finding those moments where we remember how to believe our worth in our bones. 

We deserve it.

Isolation and Identity

A Nightmare on Two Parts

I think about identity a lot these days. Some days it’s simple, a list whispered in chronological order, on repeat, a prayer to soothe soul and keep the ghosts at bay

Sensitive

Depressed

Confused

Afraid

Weird

Gay

Bisexual

Afraid

Weird

Different

Genderqueer

Transgender

Weird

Autistic

Anxious

Non-binary

Aromantic

Asexual

Greyromantic

Grey-asexual

Chronically ill 

Nebularomantic

Disabled

Enbian 

Diamoric Queer 

Autiromantic

Unique  

Lost 

Tired

Other times there is room and time to delve deeper

I wonder who I am exactly in this isolation 

If no one hears us scream, do we make a sound? 

What exactly is the identity of a social creature, draped in silks and ribbons, adorned with the language of their people, just waiting for them to read

And what if they don’t?

What if they can’t?

What if the ribbons are only ribbons

And we only have these tears left to cry

How exactly do I go about taping all these labels to my forehead so that you will see and believe? 

Which way do I arrange these words so it matters outside my skin as much as it does within? 

Those of us who are left bleeding, on the outside of sweet safe society 

Those who forgot how to be complacent

Or were never allowed inclusion to begin with

Those who are imminently more vulnerable than me

How do we arrange our guts 

so pretty for you on the chopping block

A bouquet of hearts, blood, and viscera
-And you smile so lovely
Watering your flowers 

Like we were never there

And maybe to you we were not

A myth or mystery 

You fancy it below your station
And who do we, and how do we?

(Can’t you hear the keening?)

Everyone around me is dying

And I am dying too

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yet we are still here

Friends
I don’t even know what that means

To be defined within your ghost factory

But I’m trying

I guess I will keep trying

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I hope you can keep trying 

Executive Function, Wellness, Ability, and Life as We Know it

Or How Not to Move a Multiply Disabled Household Two Blocks Away, in Chapter 3 of the Apocalypse – A Half Hearted Memoir

I have often wished I could write a how to article, or a clear cut educational article that would be so needful that it would be passed around in my circles like wild fire…or at least like a mediocre meme. 

A Prayer- Dear powers that be, please let me communicate as well and have as much meaning as one of last week’s memes. So Mote it Be. Amen. Thanks? 

But for better or worse, that isn’t my writing style. I am more of a peel back all my layers and bleed on the paper, kind of writer. That can be tedious, heartbreaking, uncomfortable, or on some extra special occasions, all three. 

So sadly I don’t really have advice, to prop you up or hold your hand. All I have is myself, all flailing hands and unsteady legs, and maybe if I am lucky I can show you the places not to fall, by falling there myself. *grim laugh* 
Three weeks ago we moved, two blocks from the tiny aging bread box we had been fundamentally trapped in for over three years. We had some notice, but not nearly enough given our numerous spoon, ability, resource, and time limitations. 

I immediately started trying to clean and pack things up. Three days into my plan to not overdo ourselves, I got a minor cold, which was severe for me because my immune system is very weak. After the cold, I had a flare, of course, as you do when you have a chronic illness and are forced to over extend yourself by life requirements. 

By the time I had gotten functional enough to start packing again, it was almost time to move. Both my nesting partner and I were drowning in overwhelming stress and anxiety. 

Whether we were able to or not, we got the house moved over a week. Once it came to unpacking, I started feeling a great internal pressure to unpack as much as possible as quickly as possible as I could feel a flare looming. 

I won’t bore you with the details, like I said, I don’t know how to write how to articles, but we did get it done…Because we had to. 

But I and, really, we, are still paying dividends on the nonexistent spoons we borrowed for the move, and we will continue to do so for who knows how long.

What exactly does it mean when two disabled people in a household whom already can not meet the needs of their lives, have to do something for them Herculean in an impossible time frame? 

We suffer of course. Our health suffers, our relationship suffers…we suffer. 
And here we are on the other side, in an admittedly somewhat better home situation. 

My health is tanked, I’ve been having scary histamine reactions, pain and fatigue flares, and difficulty regulating my anxiety and depression. 

It should I say, *more* trouble regulating my anxiety and depression. 

My nesting partner’s mental health is equally flared, how could it not be?  He has been in an anxiety spiral that hit bottom after our move, that had them unable to communicate, and lashing out in ways that left us all unsteady and shaken. 

Now we’re working on reconnecting and rebuilding, regrounding ourselves…meanwhile life grinds on, we still have to live these same stressful lives that are fundamentally beyond our ability to navigate. 

It’s likely going to take months to get on even ground again

Who knows when and if we will get to a place where we are able to get the things we need. 

I hope so. 

I have to hope.

Some days hope is all we have. 

Disruption

I had such beautiful plans

Three different blog subjects planned

Getting back on the horse 

So to speak

But you know what they say about best laid plans. 
We found out we were going to be moving, sometime in the next month, the day after my second child’s birthday. It was great news but short notice. Short notice is hard when you are two adult disabled people with very limited resources, and four autistic kiddos ages 3-16. 

Short notice is really hard in those cases, which just happened to be out case. Wooooo? Whew. 

So we’ve spent a month cleaning, packing, moving, unpacking, going without, cleaning some more…and we are sorta mostly done, in the short term at least. 
Since we’ve been mostly done I’ve developed a debilitating anxiety flare. So debilitating I can barely move or think for how intense the panic freeze and sound aversion is. This isn’t to surprising, life and routine change is hard for autistic people. The kids are of course adjusting as well, their adjustment is quite a bit screechier than mine.  A tough combination in the best of times but the children and their needs are so important. It can be difficult to balance sometimes as primary caregiver, but it still has to be done. Goodbye spare spoons.

After more or less days long panic attacks I am trying to get this under control as proactively as possible. I’m taking care of myself and trying to re-establish a routine even when my brain is so panic frozen I can barely put two sentences together. This writing may be disjointed as a result.

Thus this free writing ramble. My apologies.

I’ve been feeding my sensory needs, eating, and sleeping…So hopefully next time I sit down to write I will be able to dig into some of those great writing ideas. 

In the mean time I am alive and doing my best. 

I love you and know you are too. We will slog through together. 

Together sounds pretty nice doesn’t it?

Fulcrum

This year has been a long and torturous year of loss, pain, struggle, and surprise expenses. 

All my family and I have been able to do is survive for a while now, staggering from one dire circumstance to the next surprise broke emergency.

But now we have a small opportunity to improve our lives a little bit, the opportunity to move into a little bigger place. It will be expensive, and difficult given our meager resources…but once there perhaps the rest of this year will allow us opportunity to heal and settle in. 

A literal and metaphorical turning point

I’m hoping

Perhaps the blood Goddes will be satiated for now and we will be allowed to heal some…live even. 

I hear it said that we deserve to live, to thrive. 

So that’s the goal. 

A long slow road to be sure, but the only semi positive end in sight. 

here I am, taking that first step

Closing my eyes, leaning into the wind and hoping my faith is founded. 

Breathing blessings into the night

May the Moon and I live unhindered 

May the harvest be bountiful 

The predators few and far between 

Hope, Faith, The Moon…and Me

For we are Radiant

Cryptid Quantification

There are times when I have wanted to make a list of every identity I have held in my lifetime. 

not unlike a map

each bullet point laid out as plainly and simply as possible

to soothe the ragged edges of my soul

but i have never been a taciturn man, so a word becomes a sentence, a sentence a paragraph, a paragraph a story, a story a novel, a novel a universe. 

I can not contain or define the the divine ocean and mystical universe contained within each ragged exhalation. 

words and ink stutter, falter in the face of this expansive…

experience

maybe that is ok, just for today, or tomorrow, or forever 

humanity doesn’t have to be defined, weighed, categorized, to exist 

i am allowed to live with depths yet unexplored

unexamined

though saying that sounds like blasphemy 

the mysterious forest of my heart 

whispering cryptids

what, that we may know peace without bearing our bones for you. 

without bleeding for your pleasure 

tears for your satisfaction

what, that we may live?

Redemption Arcs and Retcon

This is a significant departure from what I typically write. It is very nominally fan fiction. It is very very nominally fiction at all. It’s obviously still autobiographical (I wouldn’t insult your understanding to deny it anyway), as such there is a content warning here for adult sibling loss, mourning, self doubt, and despair
The problem was that Leonard didn’t know exactly what he wanted, and Leonard generally was not a man who didn’t know what he wanted. He’d built his entire life around doing what needed doing, getting what he wanted it needed, got. Often enough to his detriment, true enough. But it was an irrevocable part of who he was…wasn’t it? 

Always so rock solid about himself if nothing else in this world. It had always been his anchor, the concrete under his feet. Even when he self examined, self questioned…he tried to be as honest with himself as possible. He knew what and who he was, and what exactly he and the universe shared space, comprised, co-existed. He couldn’t always get it, he wasn’t a Godde after all, just one moderately…or maybe majorly inflexible man.

But there was nothing to be done, not really, so he was adrift, seriously adrift for the first time since adulthood taught him the necessity of who he needed to be, who he had to be…to survive.

It did *not* sit well or nice. He was unaccustomed to this feeling of…something he couldn’t quite put a name to. It was breadcrumbs under his skin, it was open itching wounds and raw destructive self doubt…self loathing…self recrimination. He was sure he could think up another couple descriptors, another couple metaphors…maybe even a depressing quip or two…a pun even. 

But he hadn’t the heart, hadn’t the energy…his whole body bunched strong and sinewed, ready to save her, his little sister, his family…his only blood family that mattered. But there somehow was nothing to be done, it was far to late. Even if he could turn back time, it wouldn’t help…maybe even make things worse. 

So he was powerless to save her. It bothered him much less when it was only himself he hadn’t been able to save.

And anyway, he couldn’t turn back time so what was the point of even wishing. Hoping.
He had tried though, he had tried, hadn’t he? Hadn’t he done everything in his power? He had to believe that he had, the alternative was a hurricane so powerfully, terribly, hopeless he couldn’t even bear to look for fear of losing everything. 

Himself. 

And where was the line exactly, between being willing to do anything and being unable to everything? What good is being willing to die for someone, being willing to kill for someone when you are watching that very person slide away, shaking your hands off, willfully uninterested in hearing you, into the fog-without you-time by choice? 

It did absolutely no good. 

So Leonard didn’t know what he wanted, and didn’t know how to get the unknown. 

If only there was a plan, or a plot, or magical fix it. 

If only he could live that lie forever. Maybe she could be alive somehow, on a job, or mad and avoiding him…on some other earth. 

Despite himself he desperately wished that lie were true. somehow. Some when. 

But for now all he could do is not know, and not be, and hope someday, if not his sister, his own life could come back to him. Breathe existence into his own limbs again. 

Leonard might not know what he wanted, he might not be able to find path out of this loss right now, but he guessed it might be ok to hope. 

Just a little bit. 

Four Months

I’ve been deteriorating the last few days, though I didn’t know why. 

I was ok right? 

still reading fanfiction all day every 

Music every waking moment to drown out my sensory distress 

Today I thought, ‘I don’t know why things are getting bad again but they are getting bad again.’

Nothing bad has happened except/but don’t think about that. 

*desperately* 

Then, in a rush I remembered, as if I could ever really forget. Today is the 25 th, almost exactly four months since my brother lost his nearly life long battle with addiction, despair, and self loathing. 

*oh* 

The tears were immediate and overwhelming 

*oh.oh.oh*

This month has been the first month of my being ok-ish. Ok-ish being entirely subjective. This month has been the first month of being semi functional, of not feeling like I was actually dying emotionally *and* physically. 

The joys of mourning with chronic illness i guess. 

I’ve been wanting to write you all something beautiful, vulnerable, good. Sometimes late at night, when my body is so heavy with fatigue, beautiful words flow over and through me…and disappear into the abyss, unable to return. My body unable to comply with my needs, my desires. 

I thought i was ok-ish

I guess this is all I have right now.

It will have to be enough.