Reading about Huntington’s
Brings back memories of caregiving
The stress, the pain, the joy, the pain, the guilt
The pain, the pain
My heart aches, it’s full of love for her
But I’ve got nowhere to put it.
She knew what she meant to us.
We told her we loved her.
Remember her calling “I love you” to our backs as we left
When she finally managed to get her tongue around the words
Was it three years ago that we lost her?
Is that all?
Is that a lot?
The wound has reopened
And it feels like she’s still in the nursing home
I’m once again feeling that terrible weight
“I have to visit her, it’s been a while.”
Seeing her crumpled up
Like an empty can.
Sitting in my car
The car she gave me
The car she loved so much
She would still ask after that car
Say things like, I’m glad you have it now.
I would sit in the cab
In the nursing home parking lot
Stare at my young hands
Resting on the wheel, just where hers did
Wonder whose hands they were
Building courage, every time
To go see her
For her sake, to go see her
Because of what she did for me
Because she gave me so much joy
Because we laughed together in that car
Getting pizza, renting movies
She drove me to college in that car for a year
We gave rides to a pathetic classmate of mine
Mom scolded me for not talking nice about her behind her back
Although we were both exhausted by her unending need.
I would sit in that car
Alone now
Behind the wheel now
Despair gnawing on my brain
Dread gnawing on my gut
Knowing I would have to face her again
Face her dying again
Face her confused tears again
Watch her cough and choke again
Her hands clenched into cold blue granite
Argue away her demands for ice cream, diet coke, diet coke, one more diet coke
They said only two cokes mom… okay I’ll sneak you one more
In my childhood I said yes ma’am
I obeyed without question
It was my joy to obey
She accepted me well; I never rebelled against her
Until she was dying
Then
I finally learned to tell her no
I’d spend an hour
Either fielding her demands
Or talking her down from a mental precipice
On good days, I just got to listen
As she rambled through her own fanciful mind
Picking gems here and there for me to examine
Her imagination truly unfettered.
Every day hurt.
I’m going to have to go through it all
All of it
Again.
The spiral is coming back around
And points this way.
It’s still far off
Barely visible on the horizon.
Well
I’ve done things I’m afraid of before.
I’ve gone to the dentist
I went and went until I wasn’t afraid
I’ve taken the worst they can throw at me
And trounced that fear.
I’ve ridden roller coasters
I’ve jumped from great heights
I’ve walked alone down dark hallways with the lights off.
I visited mom.
I can face fears.
I can face reality.
I can face grisly horrors
I can face and embrace the darkness.
Shit happens.
We all gotta die.
We all gotta lose someone.
It’s okay to be scared
But being scared is a waste of precious time.
I am strong
I am brave
I can take a lot of fucking punishment.
I can take a lot of grief.
I can take a lot of burden.
I’ve been there.
I will be there again.
I’ve been well taught
How to bear things with stoicism and grace.
Sarah D. Silvey 