Art Under Corona

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Not An Ordinary February

 Not An Ordinary February Day

By Eve Brownstone

It wasn’t a typical February day. The temperature was pushing 50 and the sky was bright.  Mom enjoyed the Sun in her electric wheelchair with her caregiver.

By 3:00 a.m., she would be gone.

Mom had been diagnosed with Bulbar ALS in March of 2010. By February 18th 2011, the disease had taken almost everything—her voice, her ability to eat, to move. Bulbar ALS starts at the throat, stealing  your ability to swallow first, then  speech, then the body. But it’s the inability to breathe that finally takes you.

That week, she had been declining fast. Her oxygen levels were dropping. She had great difficulty communicating with her iPad.. Her fingers and toes were turning purple.

That night, I stayed over. I wanted to be there, to offer whatever support I could. I returned to my folks' condo after  a day long training for work  by  6pm. Mom asked for dinner with her ipad.  I gave her the usual amount of liquid nutrition through her feeding tube—it was routine by then. But I didn’t know she had already taken her medication. We were warned: Never feed her too close to the meds.

And then she started choking.

Panic surged through me. My stepfather, Dennis, and I scrambled to help, trying to suction the liquid from her throat with a long plastic tube. Desperately. Helplessly.

This is hard to say out loud. Breathe, Evie.

I called Julie, the hospice nurse. She told me to give Mom morphine—to make her comfortable. She was on her way.

Julie arrived within the hour. More morphine. An oxygen mask. Mom’s breathing was still labored.

Then Julie looked at me, her voice gentle but firm:

“This is probably a catastrophic event. Be prepared.”

Mom was dying.

Dennis couldn’t handle it. He disappeared into the bedroom, shutting the door behind him. He would stay there for the rest of the night.

I wanted to shout out loud, “ Don’t leave Dennis. Don’t run away.  You are leaving your wife alone and she is fucking dying. I held my tongue as he closed his door behind him. Then went over to mom and held her hand sitting on the shag carpet by her hospital bed in their living room. Her eyes were open. She was still here.

The past year flashed before me—the hours we spent together. I had dressed her, brushed her hair, cared for her in ways I never imagined I would. We had let go of old hurts, softened in the face of time running out. And now, here we were, at the end.

Then something happened.

Mom turned her gaze toward the side window. Slowly, she reached out her hand—her fingers stretching, grasping at something unseen. Someone unseen. “ Who are you seeing mom?. Maybe your grandma Annabelle is here with you, I think to myself.

And then—her hand dropped.

And I knew.

I knew she was gone.

For a long time, I blamed myself. It was easier to carry guilt than to sit with the unbearable truth of loss. Maybe, on some level, I thought if I could just find a reason, it would make sense.

But I know now—I didn’t kill my mom.

ALS did.

The Odd Ball

 The following story was written for the Goodman Theater’s storytelling program Generations.

The Oddball

By Eve Brownstone

It was the fall of 1979. Reagan was about to take over the White House. My family moved to Akron and my life turned upside down.

I found myself staring at the oak stained hardwood gym floor, looking down at my smudged blue keds.. I  scrubbed them last night. 

 Five other 12 year olds made a semi circle around me.
Some kids started asking questions.
 

One girl barked, What kind of shampoo do you use?
How often do you shower?,

 It felt like every answer I gave made them stare harder. Like I was getting the side-eye for just… existing.

“I use Prell,” I said. “I wash my hair every other day.”

Surrounded by those kids,I thought about my Aunt Annie, who had thick, beautiful hair and she only washed it once a week. I wanted to say that, but I didn’t. 

Then one girl proudly snorted, “Well, I take two showers a day.”

 I just smiled. Tried to be nice. I always tried to be nice.
I just wanted to fit in.
But standing there, I knew I didn’t.

That was my first week at Litchfield Middle School, seventh grade.
 

I was twelve when we moved to Akron, Ohio. Mom, Dad, me, Laura, Caty and our dog Flower 2nd piled into our Volvo Station Wagon. We moved from the windy city of Chicago because of Dad’s job.. I left good friends.  Played tag, four square and double dutch with Kenita, Vicki, and Stacy in Farmer’s Field
 

But in Akron?

We pulled onto Merriman Road, and I remember thinking:
Where are all the Black people?

Seriously — that was my first thought.

At my new school, there were maybe twenty Black students in a sea of thousands.
What I saw were Izod shirts. Blow dryers. Boat shoes.
And everybody washed their hair.
Every. Single. Day.

I was a sensitive kid. I wish I could have used humor…like speak to the hand.your smelly but what am I. Something other than crying. There was blood in the water and the sharks nibbled at my heart.

 I remember crying in class… again.
My teacher didn’t stop the bullying.
She just came up to me afterward and said,
“Well… if you stopped crying, they wouldn’t pick on you.”

Like my tears were the problem.
Like I was the problem.

And it didn’t stop.
Seventh grade. Eighth. Ninth. Tenth.

I tried to get out of class any way I could.  Nurse’s office, guidance counselor, wherever.
I faked being sick just to escape.

The guidance counselor knew me well.
One day, she convinced me to go back to choir.

I walked in, and the whole class turned and said, in unison:
“Eve is woozy!”  became the new chorus of my life.

That stupid sentence dug in.
Like there was something wrong with me.
Like I was broken.

Instead of realizing they were cruel,
I thought:
I must be bad.
I must be unlikable.
I must be the oddball.

 Eventually, I found theater.
I met other  odd balls. Oddballs Unite!
They helped me express things I couldn’t say out loud.

But that little girl —
The one in jeans with the unwashed hair and big feelings —
she never felt like she fit in.

But maybe…
Maybe she was just the real one in the room.

My 40th High School Reunion is coming up this year. I was considering going then I decided to let them know I was washing my hair that night.