PARKINSON’S DOESN’T LIVE ALONE
By Patricia Maxwell
The other day I was at urgent care making a follow-up appointment.
The receptionist was scheduling dates several weeks into the future when I mentioned that we would need a neurologist in New York as well.
“My husband has Parkinson’s,” I said.
“Mmmmm.”
Then came the head shake.
I knew that look.
I’ve seen it before.
The look arrives before the story.
Only afterward did she tell me about her grandparents.
Her grandmother was struggling.
Her grandfather was grumpy.
They argued all the time.
That was pretty much the entire story.
She didn’t need to tell me more.
The head shake had already told me everything.
What stayed with me wasn’t her grandfather.
It was her grandmother.
A woman I will probably never meet.
Yet somehow I recognized her immediately.
Not her life.
The terrain.
As I rode the subway back uptown, I kept thinking about her.
Not because I know her.
I don’t.
But I knew exactly what her granddaughter meant when she said she was struggling. That’s when the thought arrived.
Parkinson’s doesn’t live alone.
Somehow it settles into an entire family.
Children help.
Grandchildren observe.
They cover time when they can.
Then they go home.
The spouse doesn’t.
The spouse lives there.
For a long time I thought this feeling was mine alone.
Not the circumstances.
The feeling.
Then a woman in her twenties gave a knowing “Mmmmm,” a slight shake of her head, and told me her grandmother was struggling.
And suddenly I felt less alone with a woman I have never met and probably never will.
It made me wonder how many people are carrying some version of the same invisible weight. How many are longing for a little room to breathe.
How many feel completely alone.
And how many aren’t alone at all.
They simply haven’t recognized one another yet.
still curious.
What’s in the Margin
Apparently there is an entire population of people I have never met who understand me perfectly. The head shake seems to arrive before the explanation.
Parkinson’s isn’t a gendered disease.
It seems to borrow an entire family.
Children help.
Grandchildren notice.
Friends step in.
People cover time when they can.
Then they return to their own lives.
The spouse stays.
Families visit it.
The spouse lives there.
Perhaps every family has one person who quietly becomes the keeper of the details. It is strange to feel camaraderie with someone you will probably never meet. Maybe recognition is simply seeing your own terrain reflected in someone else’s story. Some losses announce themselves.
Others arrive one misunderstanding at a time.
I still don’t know where the man ends and the Parkinson’s begins.
Maybe love is spending years making room for something you never invited in. I don’t think I need answers.
I think I need occasional reminders that this chapter belongs to more people than I can see. Sometimes another person’s head shake is enough air for one more day.