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.

knowing

Knowledge = Data + Interpretation

I'm beginning to understand the depth to which autistic communication is entirely different than allistic.

I mean, that sounds so obvious doesn't it. But the lived experience of that difference is continually shocking to me.

I wish I knew how to let people know.

I do not understand what you are telling me.

You are giving me data. And that data has so many more interpretations than one being implied.

I do not know what you're implying.

I DO know that *something* is being implied. Only because I've learned through experience that there's always something more implied.

But I also know, through experience, that what's being implied could be one of so many different things with varying levels of meaning and rudeness* 

*Not the word I'm looking for but it's late and my brain no work goodly. Maybe, directness. 

So I have to reverse engineer and use deduction, based on what I know of this person and my past experiences with them, and also my past experience with communication in general, to guess at what's being implied so I can respond to that accurately.

Intrusive thoughts maybe, but I'm starting to feel that people are going to get tired of me referencing being autistic. And it's communicatio issues like this that make it so clear to me (1) why it's important to know that I am autistic and (2) how incredibly different autistic interpretation of "simple" interpersonal data can be.

I'm so tired of trying to navigate communication in allistic style. I get burned a lot. I misinterpret a lot.

On the flip side, Im also not sure I fully understand/know how to navigate autistic communication. That is, the way I was raised and social conditioning and lived experience, have all taught me something other (and, often opposing) how natural autistic communication works. 

Taught what "polite" is (social conditioning). Taught directness is rude at best, downright sinful and of the devil at worst. 

And I've been masking allistic communication pretty much my whole life. Pretending to know what people mean. Smile and nod. Agree, even when I don't understand. Take the hit when I misunderstand, and it's either hilarious or offensive to those around me.

The number of times I've been asked if I'm actually blonde. (Cause, dumb blonde.)

My best friend from college deciding we weren't friends anymore, before I even knew something was wrong.

"Autistics have trouble maintaining friendships."

Yeah, is that because no one actually tells them what's wrong, and expects them to know, but when they don't guess correctly, everything blows up in their face?

Cause thats what my entirely life feels like. Strings of relationships that blow up in my face because I had no idea what was going on and then got blamed for how I reacted.