“It’s kind of ridiculous,” said Jenny, my personal care attendant, as she tucked me into bed. “She can’t even lift her water bottle and yet she keeps these brushes around as if she’s going to paint again.” She was speaking of another client. I thought of the jar of brushes that sits on my desk. I still paint a little. I tried to explain to Jenny how much I love looking at the jar of brushes – how attached I am to my identity as an artist. I joked that her other client and I can share the cost of lessons on mouth stick painting. Since then, I’ve been holding the conversation in my heart.
I want to honor who I was without unrealistically clinging to it. I want to understand what is important to who I am so that I can become more myself. Disability strips away the outer, worldly layers that demonstrate who I am, but who I am remains. I can no longer play music. I can no longer paint realistically. I can no longer write easily. Yet I remain an artist. I hear and see and understand the world differently because I am someone who has made art.
Putting that in the past tense disturbed me. I took a break from writing to “paint” the piece to the right. It’s a collage using recent watercolor paintings as background for an electronic illustration created today. I am someone who makes art. I like present tense better. As my disability increases, I will need more help from other people to create. I want art making to be one of the last things to go. Maybe I can hum my last exhale…