in this tiny place
the stimulation is small
home is all we are
where nothing can touch us
still we twitch
wound one another
when the chaos butterfly
flaps its wings indoors
the storm concentrates,
She was drunk, struggling to articulate
Lengthy pauses before each sentence
Halting, frustrated speech.
I’ve seen this before
She fights to be conscious, despite the sleeping pill
Her mind heavy
Her body stubborn
Her tongue a lead weight.
I’ve seen this before
She is deep in the throes of neurological degeneration
Forcing thoughts through the thick walls
Of her solid-shrunk brain.
All of them demanding to be heard,
To be understood
Willing their selves past mental barriers
Deliberately balancing simple words
Like a child stacks blocks
With their fullest effort.
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
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
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
The spiral is coming back around
And points this way.
It’s still far off
Barely visible on the horizon.
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.
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.
My sister said I should post this. I wrote it right after Mom died. She suffered from mental illness for most of my life, and passed away from complications due to Huntington’s disease.
You were my idol
You were a voodoo queen
An earth goddess
Always with a touch of the divine
Though everything you said was unreal
You never lied
You were fragile
And so much a part of me.
I used to envy the kids who had normal moms
Even the adults who complained about their aging parents
But these days I know better.
You taught me how to wear my crazy well
You were a fast friend
And a devoted parent through the last moment of your life
Often you were
So much more than human.
I battle myself not to be like you
I push myself to be more like you
You were a dark enigma
Yet transparent as light
Gentle yet terrifying
When you lived I couldn’t handle the pain of your existence
Now that you’ve died I find the absence hard to bear.
I once thought I took more care of you than you did of me
But today I understand what you sacrificed to protect your children.
Your laugh echoes in my empty heart
Your spirit derails me still