I’d like to run away from home for a few hours with a friend and take a brain vacation.
Maybe get lost in a fake movie about fake problems with fake solutions.
Then spend an hour sipping a guilt-free beverage engaged in lively conversation over the hows and whys of the fake movie and what we would have done if we had have written it, and if we had have written it how it would have been so much better.
Then come home and get lost in the world of my own mind and
Getting through chemo, was it. All other goals and objectives dropped to the bottom of the list. I had a lot of ideas of how this would go; all stories in my mind. It has not gone according to those stories.
What was I thinking? Writing scripts with multiple choice options trying to force order into the unpredictable. Grabbing for something stable, an anchor of safety to make the”what ifs,” be quiet.
My script says there will be another storm, it will be darker, harsher and more resistant to treatment. Before that 2nd storm, I’m going to get better, bone medicine will work, I’ll go into remission and have my chance to live again.
That’s a nice story.
What if, what if, what if? What if this is as good as it gets? What if next month I’m flat out? What if all I can do is stare at the patterns of the ceiling and think of all the things I wish I had done?
That’s a not so nice story. Time to rethink the bottom of that list.
Her hair carefully pinned up, under her a white vest-like apron, a full skirt flared out to the floor. Her long teal-green cuffed pleated sleeves ironed to perfection. “Hello, I’m from home-health.” She was in her 20s.
I recognized her dress conforming to a nearby religious community. I felt I was visited by a a nurse from the civil war and expected her to be stern, probably a bias I picked up from an old movie. She was friendly and fun. Her confidence and focus brought a feeling of safety and trust restoring a respect for the formalities my generation is responsible for expelling out of our culture.
She offered to play her flute for me. So I had a private Sunday morning concert in my bedroom of beautiful music. It took me to all the many times I have performed for others. I have been the giver of music, but not so much the receiver. It made me cry.
“Is there anything I can do for you?” The warmth in her voice was more motherly than that of an emergency room doctor. It was October 9, 2016. I was alone by choice. The limp was not arthritis. The cancer had spread to the hip, a lot of it. For the rest of my life I would be a cancer patient.
“No, I’m okay,” I gave her eye contact. We spoke without words.
I didn’t feel like crying, didn’t feel like wailing into a pillow, or even calling anybody. “But,” I added, “could you tell me where the lady’s room is?”
The big stall had a handicapped sign on it. That’s me. I thought. I have a handicap, a disability, I am part of this group now. I opened the big wide door. For the first time I used the handicapped bathroom without feeling guilty, and relished the convenience of it’s spaciousness.
I remembered March 12, 1990. Disabled people of all shapes and sizes, traveled from around the country to Washington DC, a few miles from where I lived, to demand access to public facilities. Forfeiting their dignity, they left their wheelchairs and walkers behind and crawled 83 steps up the nation’s capitol building before national T.V. to make their point.
It was because of them, I have an accessible bathroom, a ramp on the sidewalk, and an elevator when I need it. I am very grateful for a community of people I will never meet.