unpublished thoughts

11.22.24

I wish I could express to you the amount of effort and energy it takes to survive a "normal" week of "typical" society. And I mean, survive. Not accomplish, not succeed, not thrive or learn or grow, just - survive 

***Note: NONE of this is her fault in any way whatsoever. The last thing I would ever want her to think is that she caused any of this stress. She didn't. She is literally the most amazing person I know, and I'm more proud of her than I could ever begin to express. I am so grateful for who she is and would never wish it any other way.

Unfortunately, our society is not built for autistic individuals, let alone autistic children trying to make sense of the world. (That said, the advocacy efforts for neurodivergents has been amazing, and I'm truly hoping to see more true cultural shift in understanding and acceptance -ie, accommodation.) 

2.18.25

See how I buffer everything I say about being autistic and living with an autistic child? And even pointing that out feels like a betrayal. 

And that's not fair.

I don't even mean that it's not fair to me. It is not fair to all of the neurodivergent people trying to survive every day of their lives, holding themselves to a standard that wasn't created for them and feeling unjustified and discredited any time they try to express how difficult it is.

Because it's not difficult for "other people." To those who haven't lived this experience, it is nearly impossible to understand. To those for whom this standard of living suites, it seems ridiculous. It sounds outrageous and overly exaggerated.

And that judgement becomes so internalized that we gaslight ourselves into believing it's not actually as bad as we feel it is, as we experience it to be.

We minimize and down play; we convince ourselves we're just struggling today / this week / this month. We forget how bad last year really was. Those traumatic experiences from three years ago feel blurred, and because we're in such survival mode from day to day, there is no looking back to assess or try to heal. There is only, getting through today and preparing to survive tomorrow.

I realized the depth of this recently. I am realizing the extent to which I had forgotten how truly bad it was. 

And I was shocked. 

Shocked that I'd forgotten. 

Shocked at how bad it actually had been. 

I know this because I recorded one of our meltdowns. One of the really bad ones. I'd forgotten about the recording and stumbled upon it.

It was bad. It was shocking. It was heartbreaking.

And honestly, not because of the meltdown itself. But because I'd never told anyone about it, not even myself if I'm honest. We lived through that day, and I put it behind me and I forgot about it. But my soul hasn't. We carry the grief and shock of that experience, and the fact that there is no validation for it, any where or from anyone.

A poem

*A poem I wrote for my Dad's 70th birthday, because I was traveling for work and couldn't be there in person. 12/13/2024

Wholly Unwaivering

So much you gave

Your time. Your strength.
Yourself.
Dutifully. Wholly.
Unwaivering.

Depth
And safety,
Found
In your love,
Your support.

Deep pools of
Acceptance,
And space
To be.
To be myself.

You'd say,
"It's not what's wrong with you.
It's what's right with you."
Oh dad,
You're just saying that.

And again,
"It's not what's wrong with you.
It's what's right with you."
Oh dad, I know, I know;
you always say that.

And again,
"It's not what's wrong with you.
It's what's right with you."
Oh dad, I wish it were;
But I just don't know.

And again,
"It's not what's wrong with you.
It's what's right with you."
And again. And again.
And again.

And one day,
I believed you.
I saw it. Somehow
You'd snuck it in and planted,
Deep in my soul

Acceptance,
And love.
Assurance,
And peace.
Determination,

To be.
To trust.
To learn.
To fail.
To try again.

It's been a long road.
A long,
Long road.
And yet,
just a blink.

You,
Your road,
Paved a way
For us
To be, us.

To love, and give;
To believe in more.
To learn and examine.
To fight for truth.
To live, wholly, unwaivering.


----
Dad's Poem, Alternative Edition
A door's not a door
When it's ajar

day in, day out

Poignant memes and sarcasm 

My coping mechanism 

Dark humor 

Cynicism 

Wry retorts

A resignation that this 

is life now.

Dry.

Hard.

Tired.

"And that's okay" 

Because it has to be okay

But it's not okay

Take a breath

Feed the body

Step into tomorrow 

Again

And again

And again

And again and again.

And again. 

And. 

Again. 

And I'm tired.

Shelley

Radiant and beautiful,

More than words convey;

Full of love, and life, and moxie.

You loved so fiercely;

Unwavering, unreserved.

Withholding no measure

Of love, and acceptance,

And pride in those you loved.

Not in accomplishments,

Or deeds, ability, or effort.

Only because, we're yours.

And to be yours, is to be loved.

Accepted, cherished, and celebrated.

To be yours, was an honor, a privilege,

A bastion I'll treasure forever.

So long

2023 kicked my ass.

Legitimately. 

Very badly. 

In more than a few significant ways. 

I'm sure some nice things happened too.

Mostly because, it's statistically likely that I did have some fun, enjoyable moments in the course of a whole year. 

And yet, if I had to recite from immediate memory, the first five things I remember from this past year, they would nearly* all be terrible, no good, very bad things.

*The one notable exception being - we procured our pop-up camper ❤️ 

Ironically* to me - my lowest moment came after a six-week migrain-a-thon - when I slammed into a proverbial wall of hopelessness and fear. 

*I can never remember if I'm using "ironic" correctly or not, but I stand by it, even in its likely wrong-ness. 

I say "ironically" because - it seems odd to me, in retrospect, that *that* was my lowest moment. 

Because, on December 6, I was fired.

Abruptly.

Unjustifiably.

Fired.

There's "less than a thimble-full" that should be said here. 

The main take-home is -

#1 - how incredibly shocking it was, and

#2 - how unsurprised I was

These sound completely opposing, but they're actually -really- not. And while I am wildly resisting the urge to break it all down, etc, that's not the point of this post.

The point is.

I was fired... 

from *the* job.

The job I worked so long to get to.

My "dream" job.

My career.

Gone.

Unceremoniously ripped away. 

It was absolutely shocking.

Ice water in my face

Stealing my breath 

And leaving me stunned. 

Silent. In shock. 

But not surprised. 

Keep your eyes open long enough and you see it coming. It doesn't matter.

It still takes your breath away, 

And leaves you stunned.

And, somehow, surprised that you feel stunned.

The point of all of this, though, is to say - this was astonishingly not my lowest moment this year.

And that fascinates me!

I'd already faced my worst moment.

I'd already chosen to love my-[future]-self, by caring for my-[current]-self.

I'd already chosen to "live my best life," in spite of the worst. 

In the face of the bad - the migraines and the unknown and the fear and all. the. broken. things - with no promise of repair or hope - this is what I've got to say:

"In. Your. Face.

I'm going to have a good time in spite of you. 

I'm going to pursue joy 

And wave it your face, 

so there!"

And then life was like, "oh yeah?

Let's see how much you mean that,

Bwahahahahaha."

*Evil laugh definitely necessary, cause dear Lord if we don't maintain a sense of humor we are going to lose our f*cking minds.

So here I am, in all my ridiculous optimism, trying my very darndest to make life not-suck for my little family of 3 and my soon-to-be teenager (9yo is basically 13, right?*) ... 

*Joking! Mostly. 

...And I get this awesome (not) icy curve ball to the face.

But joke's on you - I'm already dead inside.

Ha, wait, no... that's not it...

Okay, but really, jokes aside now -as best I can-

("I laugh bc I'm traumatized." -Elyse Myers)

So here's the thing. 

I am sick. And I am tired. 

And I'm sick of being tired.

And I'm tired of being sick.

And maybe I won't ever be able to change the course of these things in my life now,

But that doesn't mean I'm going to resign myself to - "that's just the way it is"

Nope.

I mean, yeah, maybe that IS the way it is.

Maybe I will be sick. And tired.

Forever and ever amen. 

But I refuse to let that be the only thing I am.

I gotta be sick?

Okay fine, we're going to add some fun.

I'm going to be tired?

Great, I'll be tired in the great outdoors while I look at tree tops blowing in the wind and spend time with my almost-teenager before they move away to college. 

I might never conquer some of the hard things I'm facing. They may walk with me a long, long way.

And I guess I'm realizing that I'm tired of waiting for some magical happily ever after moment to get here so I can finally be happy.

That's not the way this works.

Instead, I want to intentionally build joy. To be purposefully present. To recognize the good with the bad. And, to remember the joy. 

And while I'm loathe to discuss this as a new years resolution (it is not that) - I am excited and hopeful about our first intentional step towards living with joy:

Our Jar of Joy. 

To document, for our-future-selves, the happy moments we experience. So that, this time next year, we can review and bask in every little joyous moment we had together. 

Happy 2024 everyone.

Wishing you a beautiful blend of peace and adventure and joy admist the pain. 

💙

Loving me

I'm in one of those seasons that's hard to talk about. The really hard kind. The kind that have you feeling like Atreyu as his horse is sinking in the mud. Or maybe, like his horse, fully in despair and sinking in the mud. In either case, it feels like despair. And mud.

I have chronic migraine. For the past -I don't really know how many years and I don't really care to count it... (but let's just say 6+)

In the good seasons, I've learned to walk a tight rope of careful rules to keep myself (mostly) functional. 

-Work part time.

-No caffeine, except one coffee protein drink first thing every morning between 6 and 7am.

-No dark soda and no soda at all on an empty stomach or more than 10 minutes after eating

-No sugary food on an empty stomach and if I want to risk it I better add some protein 

-A handful of meds and supplements every morning and night 

-Drink lots of -ice cold- water for hydration and temperature control

-etc etc etc

A slight mistep can put me in bed for the rest of the day. Or, an unfortunate encounter...

-any loud, piercing noise or consistent noise

-any random smell

-a flickering light

-getting caught up in (anything) and forgetting to have a snack

-changes in weather or barometric pressure

-bad pollen days

-god knows what else

So yeah. I live every day, nervous of every encounter and trying to make sure I keep well enough to at least make it (awake & functional) until my daughter's bed time. At which point I can crash without feeling the crushing weight of guilt from being a chronically sick parent.

And those are the good days.

For the past six weeks, I've had migraine pretty much every single day, regardless of how well I managed -all the things-

Some days are less painful than others. And I've learned the very important lesson of not pushing it, so most days haven't been overly painful.

But now, six weeks in, my nervous system is more sensitive than ever. I can feel my brain and my hair follicles and hear every. little. noise.

And, more than that, I am deeply depressed. I can hardly get out of bed or do anything for myself. Whether I'm in pain or not (though, let's face it, I am). My soul is tired. And it's so tired of being tired.

These are the scary days. The days I scrape every corner of my brain for the motivation to keep breathing. Slowly in, peace. Slowly out, rest. 

I don't have a grand motivating lesson here. I don't remember where I was going with all this when I started writing this, and my brain is too fuzzy to work it out.

I'm in the mud.

And I'm letting myself be there. Because I am there. It's hard. And it hurts. And I'm afraid. And I don't know what things will look like on the other side of this, if there even is an other side of this.

But whatever it looks like, I want to be there. So, I'll let myself be here now.

I love you. Me. 

Future me. Current me.

I love you.

And I promise to do my best to care for you.

Pivot

 We've leveled up. 

I can't pinpoint the moment, or the reason, but sometime in the last few months, there's been a shift. I'm so grateful. And I'm so proud of us. Our little family of three. We have all worked so hard, over the last two years especially. And I think we are seeing the payoff from that. 

It's impossible to say in one quick sentence, what has made the difference. I don't think it's any one thing really. But I'm so grateful for the shift.

The relationship between them and their dad has become a safe space. I'm so proud of them both. For building compromise and repair. For communicating and willingness to lean in. That's the hard work. It's so simple, but it's so hard to do consistently. And it's so important. 

What did he do differently to help build that safety? Again, it's hard to put a finger on any one thing. To me, I've been so impressed by his willingness to pivot. In a heated, emotional moment, on the verge of meltdown and frustration for all of us. To stop, take a deep breath, and come at it differently. To soften and take a step back. To be willing to apologize and repair, to build trust. 

It's made a huge difference.