Most Days, Dystonia is a Background Hum
Most days, dystonia is a constant background hum,
Others, a Beethoven symphony
But episodically, it’s a death metal concert–
Neck muscles pulling so violently
My teeth clash together. The tremors
And spasms unrelenting, causing
Fluid buildup in my face, drooping eyes
My back a metal sheet, barely bendable
I’ve experienced abdominal spasms
So strong that I’ve thrown up,
Rib muscles so tight it’s hard to breathe–
Like an anxiety attack, and I have to
Talk myself down: “it’s just the dystonia.”
These are the things other people
Don’t see. The DBT group therapist says,
“With disabilities, radical acceptance
Might be needed on a daily basis
And it might involve accepting
You see what others cannot see.”
I’ve tried to rest today, only doing:
The course evals, emails, laundry,
Cooking, driving my teen to school,
Out of spoons by 11 AM
And the 2nd shift is coming:
Driving kids to martial arts after dinner,
The promised stop for groceries
For the promised holiday party.
The rest of the month stares me down.
I said “yes” to too much, somehow.
I want to say “yes,” again, and again.
Yes to the holidays, yes to outings
To concerts, walks, coffee dates,
Teaching more classes, volunteer work–
To life itself
I think about all the upcoming “no’s,”
Try to reframe them:
Instead, I’m saying yes
To afternoon naps with the cat
Self-care, warm blankets, books
Space to think, maybe
Sometimes poems only come to me
During the middle of a migraine.
Sometimes I wonder:
Are my good weeks the stolen ones?
Or is dystonia stealing all the other weeks
From me? The tai chi teacher in me
Says…my life is equally
Made up of both the good weeks and the difficult ones
They don’t exist without the other.
I look at the holiday cards accumulating
From my spoonie penpals
The ones who feel good enough
To send them. They make me feel
Less forgotten.
And I know they’ll understand
Both the words I’ll send someday
And the silence in between.
Composite Sketch
Someday we'll be the last ones left
To remember what life was like before internet, cell phones, smart phones, texting, social media
As our parents' generation dies off
Then it will be just us
You said there was a magic to the frustration
Of being a kid in the 80's & 90's ,
Of wanting more, knowing more was out there
And that you had to wait to touch it
"But," I said, "there was a slower pace of life
And precious serendipity
And don't you remember
How when you hung out with friends or family
No one was checking their phones?"
Back then, it seems, to me
We were either alone, or together
Not so much in between
And now we're mostly all alone together
Most of the time
Less alone
And less together
How in high school we'd stay til midnight at the Greek diner
And no one's mom was texting
No one was looking for us at all
And you said, "that wasn't me
Your memory's already unreliable
We didn't even know each other then"
And I said
"That's because it feels like we've always known each other"
And you often cite
When I get all Luddite again
That we met on social media
And stayed in touch all these years via texting
Not, apparently, by the grace of God
And I say, "that wasn't me
Your mind's already going
We first met in person, I remember the day"
And you said
"That's because it feels just like yesterday when we met,
I still remember us young."
And I said, "do I know you?
Aren't you the one with the kraken for an avatar?
Do I know you at all?
I know I used to have a thing for you
But now I can't separate the online you
From this person in front of me.
Didn't I used to go to your house to play Mario Bros?
It was just down the block."
"No, no, that wasn't me at all.
That was Davie, and like all the kids you grew up with
He's not online, really.
He's dead, or incarcerated, or working 4 jobs
Or he has 12 friends on Facebook
And hasn't changed his profile picture in 7 years."
And I said, "I remember
Jumping on AOL after every X Files episode
To chat about it with a friend
Even though I'd see him at school the next day
That's my 1st memory of the internet
I was 17 and it was all new
Email was romantic
The romance of it was in the extraneous
Which has largely been cut out today."
As for that X-Files friend,
We still like each other's Instagram posts...
Once in awhile.
And I guiltily thought about how I checked my phone
Precisely twice on our last walk in the woods
(It's a pandemic! I'm a mom!
What if my child got sick at school?)
And I silently vowed to myself
Not to check my phone even once
The next time we were together
2 Gen Xers
Who'll someday be the last ones left.
Just a Bird
I message you and tell you I need to talk to you about death
That I have some questions
I'm walking in the city we've met in so many times
There are sirens going by
And there's a sidewalk that goes to nowhere
I'm walking in the street
I've had to park far away
Things look different but yet the same but yet different
All the parking rules have changed
The mailman is the only other one out
And looks at me questioningly, not unkindly
Like I'm a curio shop novelty
Who's left a window display
To sashay grandly down a mythical American lane
In a ruffled frock and swinging a parasol
About to break out into song and dance like in a Hollywood musical
I think about all the things we did when we were young
How you biked across the city to meet me
Almost getting your ass kicked at a stoplight
How hard I laughed when you recounted the tale
How many things we laughed off
Back then
That don't seem funny at all now
That permeating undercurrent of hard-edged menace
That was a constant childhood companion
That sometimes gave our lives
The thrill of danger, adrenaline--
There's a continuous wall of traffic
And I patiently wait for traffic to clear or cars to stop
In my twenties I would confidently walk out into any traffic
Making it all halt
These days
Maybe it's the age of distracted driving
Or the sheer increase in the number of vehicles on the road
But it's at least in part the growing chronic awareness
Like a fly buzzing around my head
Of my health, my limitations, my mortality, my chronic pain
I'm not so confident crossing the street anymore
I thought women were supposed to become more confident with age
But these days
I think about how much more fragile things seem
The world, our health, our bodies
Life of all and every kind
The older I get,
The more I feel everything constantly hangs in the balance
Here is a long, curving hill with a narrow curb
I always used to walk on as a child, balance beam style
I do it again, and don't falter, barely looking down
But the vague image of twisting an ankle
Is pounding at the gates of my mind
Whereas at 4 or 5 years old
All I thought about
Was how magical the trees and rocks looked all the way down
Dirt flies into my eyes
Somehow getting past the barrier of my glasses
But it's still COVID era and
I don't want to wipe my eye without hand sanitizer
But hand sanitizer will burn my eye
So I walk with the dirt rubbing my eye
And I think about how
It takes my eyes a lot longer to adjust to the light
But also to the dark
I think about the last time we walked
On the lake bluffs
A blackbird flew out of the brush
Into your face, hissing,
And you started, though I thought
Nothing in nature could faze you
"Just a bird," I said
As gently as I could.