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It’s all I’ve got

“You took the words right out of my mouth.

When you knew that I would need them.

What am I supposed to do now;

Without you.”

–         “Michigan”, Milk Carton Kids

 

Maybe now, if I just sit here and type, there will be words.

At least that’s the hope.

When I’m alone, late at night, and the kids, and Heidi, have gone to bed, and I’m tired, too tired, to type, I think of things I want to say.

They’re so eloquent, those lonely beer-fueled words. All alone in my head. All alone with no one to say them to.

I am powerful and eloquent; and I know how to explain away the sickness, the loneliness, the fear.

And then I fall asleep, and get up, and don the workpants and report to the terminal.

Punch this key, punch that key.

And then I come home and the cycle repeats.

Late at night, I am smart.

First thing in the morning, I report to where I need to be and the cycle starts all over again.

There has to be something more, I think

And then the bills come.

And I have to pay them.

And I have to submerge myself back into the cycle.

For one more day.

For one more year.

Somewhere there’s a payoff.

*  *  *

Truth is, three nights ago, I had an epiphany.

I stood alone; cool February desert air blowing across my skin, and realized I was happy.

Not just happy, but happy, happy.

If you think about the last year – well, if you think about the last year and you’re me – that’s no small feat.

There were two nervous breakdowns and the strange, long recovery from that. To summarize, it takes as long to recover from an anxiety disorder as it takes to make it.

And then maybe a few months more to erase the memories of how easy it is for your mind to destroy your physicality.

Then there was Guillain-Barre, version 2.0.

On one hand, the trip down Anxiety Avenue prepared me for being in the moment as Beckett slipped back into paralysis and dysfunction.

On the other, I wasn’t mentally ready – ever – to live that again.

The lifecycle of his disease was short (stupid short, we would later learn), but the recovery from that was (is?) disjointed and complicated.

Nothing can prepare you for watching your child’s use of his body disintegrate; nothing can prepare you for the legs failing, the fingers not moving, the ability to do something as simple as holding a phone becoming so complicated it slips away in 24 hours.

Forget that.

Throw in the tests, the needles, the spinal tap, the MRI, the tears. The doctors who don’t believe you when you swear your child is 1 in a million and can you please give him the $20,000 drug.

Layer it all on top of a positive, “I just wanna’ do my homework” boy (man?) in a 12-year-old body; all the while worrying about a 9-year-old girl who needs her brother, but can’t see him because of a hospital policy.

Then do it day, after day, after day.

Stare the doctors in the face when they want to send your boy home because they don’t have an answer, but it ain’t Guillain-Barre because “that only happens once.”

Feel the rage when you finally lay into those doctors, when you tell them, “I’m done listening to you. Now you listen to me.”

Feel the joy when that $20,000 drug works; the smug satisfaction when the doctors grovel either in awe that you were right, or in relief that this sweet, sweet boy is getting better. The sober me knows it’s both.

The trajectory of recovery didn’t make it any better.

I dove into dark alleys; leaned way too heavy on the bottle; but somehow, some way, came out on the flipside in a better place than I’ve been in years.

I still haven’t made complete sense of it.

I’m just going to roll with it.

Because that’s what you do.

Accept now. Ask questions later.

* * *

So, back to that happiness.

We’re rolling in true raw reporting right now.

I’m not checking my emotions at the door. What you see is what you get.

It seems the only way.

So here’s what I know. Here’s what I’ve learned.

Today: It sucks.

But it’s also beautiful.

And it’s also the only fucking thing you have.

So you pick yourself up and do the things you’re supposed to do.

Exercise. Eat vegetables. Take the people closest to you, and hold them. Tell them you love them. Make it a point to make sure they know.

Some of them are squeamish.

Fuck them.

Tell those people three times you love them.

There’s no room for their inability to embrace it. They’ll thank you on their death bed.

Do the things you want to do.

Do them now, rather than later.

God, I’ve wasted so much time doing the things I thought I was supposed to do.

I’m fucking 40! How did I get caught it that trap?

* * *

But, yeah, here it is.

I wish I had more eloquent words; a better story. Something more “show” less “tell”.

But, nope.

It’s all pedestrian tonight.

I got to happiness by spending every second in the second.

Erase your mistakes.

Forget who you plan to be.

Now.

That’s all there is.

 

 

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