Making a Happy Holiday

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.

Isolation and Identity 

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

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

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?

Holding Onto That One Last Thread

Holding Onto That One Last Thread

Oh Brother Dear, we sadly fear your presence we have lost

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I live here now

I don’t know where here is

The night spirals from my fingertips 

sweet promises and regrets

I am the eye of the storm 

bereft and bloody 

broken open raw

numb

out of sync with this universe 

it’s moving on without you 

relentless

no matter how I scream and tear my hair

no matter how

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This room feels empty without you though you haven’t been around for awhile. The air is heavier now. it hurts to breathe. i occupy an impossible moment 

dying

betrayed by my continuation

how does one define the edges of a lifetime? chubby baby hands, blue eyes, warm raspy chuckle

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A little over a month ago my baby brother died. He died young and he didn’t have to. The system failed him, on multiple levels. Maybe we failed him too. 

that keeps me up at night sometimes
I had to sit with that first sentence for awhile, honestly. A little over a month ago, my baby brother died. 

I haven’t been able to write much, because I haven’t been able to think much. My spoon supply, such as it is, is going to parenting…and pretty much just parenting. 

I’m here, alive, coping. I don’t forsee ever seeing any of my blood family again, short of minor miracles. That’s been coming my whole life, they always made sure I knew I was unwelcome, burdensome. 

obligated. 

I have one paternal cousin who still speaks to me. He’s a sweet guy. I’m thankful for that human connection. He’s been a singularly positive influence on my life, though we live in different states and have much different lives. 

But we’re poor, my paternal relatives are to far away, probably wouldn’t really  understand my identity, and my maternal relatives and I have gone our separate ways. It was, I think mutually beneficial for everyone. 

So here I am, cut off from the people who knew him, my brother, best, and I’m coping. 

I mean, except I’m not really coping at all, I’m parenting and reading fanfiction. In the realms of self medication, fan fiction is almost entirely harmless and that’s good.

 I’m a parent and don’t have the luxury of the self destruction I was on the road to before children. Becoming a parent gave me focus, gave me a reason to strive for something better. I repay the gift they didn’t mean to give me, by maintaining that focus and reason to live…even when it starts feeling a little to nebulous and far away.

but I understand why I am currently hyper fixated on fanfiction. My brain is reading sooo many stories about anxious, sad queer boys because it’s an anxious sad queer boy, and these little happy endings just…alleviate the pain for a moment, as long as I stay submerged. like soothing music or soft fuzzy blankets. it’s.like an emotional stim. brain candy.. 

let me just stay here submerged in Emo Quinten Coldwater and Regal, Gorgeous, Bad ass magnus Bane. 

It’ll be fine. 

probably.

but as a coping mechanism it’s not so great for the concentration. though i don’t know what could possibly be better. I can be slightly checked out or i can be writhing in devastation. those are my current choices. no more. no less. This is the first time I have been able to write about this without falling apart. I’ll call that a good sign…of some sort.

Allistics accuse autistic people of being cold and indifferent in the way we mourn. That darn flat affect. 

In my experience the opposite is true though, we carry loss and hurt so heavily it overloads our whole system, like a fuse that needs flipping after a lightning storm.  

look away. look away. look away

I disentangle slightly so that I don’t burn out entirely.  

but that doesn’t mean i don’t feel it. 

i feel everything.

I’m still emotionally fragile even slightly disentangled, every strong emotional reaction turns into gut wrenching despair and then to more chronic pain flares. I forget sometimes why every single thing makes me feel like my heart has been ripped out. 

oh yeah, because it has been.  

I don’t know what mourning is like for allistic people. I don’t know what mourning looks like for other autistic people. 

This is what mourning looks like for me. 

I’m not there yet-wherever there is

and I don’t know when I will be

but I’m trying and I’m coping and I’ll be ok

more or less

eventually
in the meantime, anybody know any good fan fic? 

On the Nature of Love

I don’t talk to often about ethical non-monogamy, primarily because I think there are already so many people having those discussions with much more important perspectives, including the infinite Michón Neal, and deeply gifted Milton Goosby who is always working hard to be a better human, and shares that process with his readers. 

But today I want to talk about something tangentially related to polya, and that is how I experience love. I recently wrote an article about the ways I don’t experience love as an aromantic, nebularomantic autistic person, but that conversation isn’t entirely complete until I talk about the ways I do experience love.  

Because I have difficulty labeling and differentiating between types of love, non-hierarchical polya or relationship socio-anarchy, which to me is concerned with the overall well-being of the group or network with all parts being equally beloved, important, and relevant, is the relationship structure I thrive most in. 

There have been four children born of my body, several of my partners of any definition or title have children as well who will always be family to me, a nebulous network of beloved little buddies. The duty I hold to protect and support the small people in my life, is worth mentioning, and worth mentioning first. Kids aren’t just baggage and burdens. don’t be that person.

ok, So let’s talk about love! 

Just to remind everyone as we get into this I’m autistic but I’m not all autistic people. I’m aromantic but I’m not all aromantic people, I’m nebularomantic but I am not every nebularomantic person. Got it? great, let’s go. 

The way that I love people feels expansive like a galaxy, there are points of burning stars, clouds, an infinity of life and light but it has no rigidity, no defined end or beginning. 

As a small child my mother would try to trick me into going to sleep by telling me to visualize the entire universe and then coming to the end of it. I was supposed to basically self meditate on stars I guess, it was the 70’s after all, but what ended up happening is I would become increasingly concerned about the fact that I could not visualize any defined ending to the universe, what was there a giant wall? a fence? what was on the others side of the wall then? what could possibly be there but more universe? 

That is my fundamental relationship to love these days, the way I always have loved and never had words for. There are no defined lines that I can discern. What could possibly be on the other side of my love for a person but more love?  

When people ask me how many parners I have I don’t even know what to say. Some relationships obviously count, people I have talked to about our dynamics and with whom I spend one on one relationship building time with either online or in flesh space, but I also have many, especially autistic friends, my autiloves, whom I love extremely passionately. Where do I draw the arbitrary line in who to count? how often we talk? what we talk about? how they potentially feel about me? None of that makes any sense to me as an autistic person. I don’t want to conscript anyone into a relationship they aren’t interested in, I don’t need reciprocity to love them. But the love is no less real for lack of an allistic approved label. 

My autiloves especially can be difficult for me to define or explain. Sometimes with other autistic people I can have an intense synergy, a spiritual vibrational synching of energies, if you will, that feels to me very similar to what people call soul mates, with none of the requirements, goal posts, or definitions. These folks I may not talk to often since neither of us have allistic social templates or ingrained rules. The combined quiet of two neurodivergent brains just trying to swim the seas of life may prevent socially expected constant contact, but that love is still deep, refreshing, growing, important love.

But what about straightforward platonic love? Well I don’t know really how to specify that, but I can tell you I have friends I love very dearly who more or less fall into a socially accepted category of “platonic” but those relationships are no less important to me, my affection for them no less important because of their friendship status. 

 My heart and mind aren’t hung on my genitals. My care for you does not depend on you being romantically involved with me. I’m happy to love people for their peoplehood, from afar or close up. I don’t know how to divy people into polite little categories. 

So for those of you I love, thank you for being you. 

For those of you who love me, thank you for giving me room to be me. 

For those of you who hold me, literally or figuratively, when I am lost in the sea of my fears and depressions, I owe you my life and that is no exaggeration.  

If you read this and are wondering, did he mean me just then? yes I meant you, you silly beautiful you. I love you too, in all your ways of being you. 

Making Space for Mental Illness

I have anxiety and depression. 

I am also autistic, acutely asthmatic, have a chronic pain condition, and most likely one or more autoimmune conditions. I have learned over the years how to give my body grace for it’s many symptoms. 

I know for instance, that if I wheeze when I stand up, I have to take it easy and avoid chemical triggers, if my fatigue makes me want to cry that I need to rest until it lets up, if I am sensory overwhelmed or unable to speak to withdraw from stimulus and to fill my day with sensory pleasing activities as well as self regulating stims, and if my body is on fire with pain to be still and treat it as best I can.

I have learned through trial and error that trying to bull through these symptoms will only cause my overall health to spiral. There is no use in being in denial, or pushing through unless I have no choice. It only hurts me….and if I am in a self recriminating mindset, it makes me less productive too. 

I have a lot more difficulty being gracious with my self about my anxiety and depression. Once these two show up I tend to fall into a pattern of negative self talk and fighting myself to try and force these feelings away. 

I understand why, my family history of weaponized mental illness plus internalized saneism and ableism that taught me practically from birth how to be ashamed of my feelings, but not how to process or deal with them. 

Here I am, a breath away from 41(i think) and still struggling with how to treat my mental illness with as much grace as I have learned to give the rest of my body/self. I want to change this, I want to lovingly embrace these parts of me that are not inherently wrong, are not defective, which is only my inherent me-ness plus the imprint a lifetime of othering and toxic familial relationships left on that base shape.  A perfectly fine mix of strengths and weaknesses. 

So now I am trying to change that, I want to give my body the grace to work through it’s emotional symptoms as I do it’s “physical” symptoms. I’ll be honest, I don’t really know what that looks like. I’ve never even imagined what it might look like to not struggle under the weight of this internalized saneism and ableism. 

I don’t know…but I think the first step is in letting myself feel my feelings without the internal dialogue telling myself what a useless waste I am for being terrified or depressed all the time. I think for me the first step is allowing these feelings pass over me as another aspect of me. Not for attention, or excuses(because privileged people should never use our mental illness as an excuse for our oppressive behaviour), not to wallow in them self servingly, but because denying them and trying to shout them down is never going to work. 

I feel like there must be a middle road for me between denial and drowning in them.

Because denial has never worked foe me. It’s time to try some semi-radical self acceptance. Hopefully some day, as I am able to work through this, a next step will become clear. 

Hopefully some day, I will be able to breathe a little easier.