fbpx

I am Jamie Berry

living with ALS

California


It is what it is, you get what you get, but you CAN shove HOPE in the way.

A Perfectly Imperfect Life (this is a poem)
November 23, 2020

Jamie Rose Caglia Berry

A little girl playing in the dirt without a care in the world,

Her hair was kind of bushy- with a little bit of curls.

Bandit and Spunky were her dogs, WAY better than any toy,

Her life was perfectly imperfect, full of sunshine and of joy.

Her Dad rode a big loud motorcycle that rattled her entire head,

She’d smile and watch as the dust cloud grew, as up the dirt road he sped.

Her plans were simple and easy: play in the field, the creek, and the dirt,

Drive little dump trucks in the sandbox and wait for Daddy to come back from work.

He drove a tractor called a scraper and he worked in the dirt every day,

He would come home with his lunch pail in hand and she could not wait to take it away.

She would open it up and look inside to see what he did or did not eat,

Then she would help pull his dirty boots off of his hard-working big tired feet.

She would stand in his heavy boots with an empty 12 pack box on her head,

She’d tried to walk and watch them laugh and hang on every word they said.

They were a lucky family out in the country, where you can see all of the shining stars,

The main road was very far away and the trees shielded them from the cars.

You could say there was nothing to do all day in the middle of trees and apricots,

And she would say that there’s too much to do-her imagination always set on non-stop.

When you are little, your version of happy depends on very few things,

Food in your tummy, dogs to play with and the love that your family brings.

But in the blink of an eye, you’d be surprised at how fast a dark cloud can pour down so much pain,

She knew a new feeling in her heart when she saw her big tough Dad using a cane.

He was 6’3”, he had tattoos, he was her hero and he was strong,

He was her protector, her world and in his arms- she knew nothing could ever go wrong.

But then she was told to put on a mask when they hugged and she knew it made him feel sad,

He sat with his legs up on a chair, he was getting thin and he was feeling bad.

She did not hear his motorcycle roar outside at all anymore,

Now she heard an oxygen tank and sometimes she’d hear him snore.

Everyone tried to act normal, nothing’s wrong, we’re all having a regular day,

But she was really fucking smart and she felt the “bad” that was headed their way.

Her cousins would come over to play and her Aunts would visit her Mom

Acting like everything was fine, with a smile- but her little heart was far from calm.

Something was very wrong and she knew it, but she didn’t know quite what.

She played with her sisters and cousins in the creek, but a feeling sat in her gut.

Then her life or memories got foggy, because time just drifted away,

She knows they were fucking happy as hell, and that it was all just snatched one day.

Her mind grips onto the faded scent of gasoline, WD40 and of grease,

Ironic it seems that those are the smells of her world NOW and they bring her so much peace.

You see, she grew up and married a tractor man who operates an Excavator in the dirt,

He comes home with heavy muddy boots that she pulls off for him when his hands hurt.

She played with dump trucks on the ranch and now they have some of their own,

She drives one with her little daughter as they laugh and bounce right up that same old dirt road.

They make a big dust cloud, she can’t help it- it is in her blood to go fast,

Her daughter says “Daddy’s going to mad…… but do it again!!” so she hammers down on the gas.

They are a lucky family out in the country, where you can see all of the shining stars,

A perfectly perfect place for them to just “be”…every bit of it IS what they are.

Life is awesome and strange and fun and great and then it can rip your world apart

“Hey! They look super happy together, I think I’ll shove my hand in their chests and rip out their beating hearts.”

To take away a little girls Daddy or Mommy is a fucked up thing to do

To watch your protector, your idol, your heart, torn down is simply fucking cruel.

True love is rare and hard to find, a true soulmate for all of your life,

Explain to me how it makes any sense to leave a husband without his wife.

Or to take a young mother and rip her beating heart right out of her loving chest,

Stomp on their love, break their dreams into pieces, leaving her to clean up the rest.

I do not fucking get it and there’s nothing anybody could possibly say

That would make me understand the things that happen to GOOD people every fucking day.

It does not matter if I understand it or not, because ultimately, it’s none of our say,

It is what it is, you get what you get, but you CAN shove HOPE in the way.

Today marks 40 years on the dot, since I have felt safe inside my Dad’s arms,

But for 25 of those 40 years I HAVE known what it’s like to be shielded from any harm.

I met Jason when I was just nineteen. He IS my Ride or Die.

Without his arms around my soul, I would never know a love so high.

Then time comes to a screeching stop and look at the cards that I’m holding,

As a Mommy and Wife, I look at those cards and say FUCK YOU ALS, I AM NOT FOLDING.

Fuck you for trying to Groundhog Day my life with the same fucking shit from way back then,

Fuck you for trying to ruin our fairytale world and for pushing to make our story end.

The stories are so very similar, but some of our roles have been flipped around,

It’s like we are living in a world full of birdies and music, but we cannot hear one single pretty sound.

No matter how much sunshine warms up our hearts and shines down on our happiest day,

Somehow, someway, ALS manages to claw it’s way up from Hell and insert itself in our way.

FUCK ALS, FUCKING FUCK ALS, FUCK YOU FOR FEEDING OFF OF TRUE SORROW

FUCK YOU FOR TRYING TO CRUSH ALL OF OUR DREAMS AND STOMP OUT OUR TOMORROW

FUCK YOU FOR TAKING AWAY MY SMILE SOMETIMES BECAUSE I LIKE TO SMILE REAL BIG

FUCK YOU FOR TEARING THE HEARTS OF MY FAMILY APART AND FUCK YOU FOR HURTING MY KID.

YOU MIGHT BE THE UNDEFEATED CHAMP, AND YES- YOU’VE LEFT ME WITH HITS THAT I HAVE FELT-

BUT I’M ALL FIGHT AND HEART, MOTHERFUCKER, AND I WANT YOUR FUCKIN BELT.

So fuck off….because her life WILL BE perfectly imperfect again.

The End.


More stories

See all stories

Back to Top

Join us for the 2024 Community Summit!

Join us in Washington DC from May 29th - June 2nd for the 3rd annual ALS Awareness Month flag display and inaugural Community Summit.

Learn more! Continue to the site