Setting: Neurology exam room. The patient wears a hospital gown and is seated on the exam table. The doctor, seated on a low stool, faces her.
Patient: I know exercise is important for people with multiple sclerosis, but ever since my MS has started progressing, I worry about overexertion. What do you recommend? Yoga? Water aerobics? Pilates? Kickboxing? Zumba?
The actors emerge hand in hand for their bow; the patient loses balance, tugging slightly on the doctor’s arm. A fine job of acting, very realistic. Scattered applause.
The house lights go up. People quizzically look at one another. As theatergoers walk up the aisle’s incline, an usher hears the following:
“It’s true.” This comes from the last person climbing that incline, which feels to her like hiking the entire Appalachian Trail, bum leg dragging along as she hitches her hip in accommodation. Along the way she feels her abdominal muscles and hips work to propel her when other muscles refuse. She examines dust bunnies and abandoned programs twisted and rolled into new shapes, thinks of her own body’s twists and changes.
I don’t think I need to tell you that I am that woman in the audience and the patient on stage.
Before my birth, my family had kind of a relationship with theater and disability. Days after my mother and father met each other acting in Tennessee Williams’ The Glass Menagerie at South Coast Repertory—she playing the limping Laura, he playing the Gentleman Caller—my mother had to go to court for a parking ticket she couldn’t afford. When her name was called, she was so nervous that she immediately went into character, limping slightly as she approached the judge’s bench.
“Were you in The Glass Menagerie last night?” the judge asked.
“You were absolutely marvelous,” he said. And he dismissed the ticket.
When my mother approached the bench that day, she was unintentionally acting, driven to limp by fear, whereas today fibromyalgia and arthritis limit her mobility. She has given up the yoga she so enjoyed. Last year, understanding the way physical therapy (PT) helped me retrain my brain and legs to talk to one another, and how occupational therapy (OT) opened the channels of communication between my brain and left hand, she gave PT a try. Once she was assigned the right therapist, they worked wonders together. She still has pain, but has learned to take some strain off her knees.
A couple years ago my gait changed for about a year, left leg on strike. Then my left hand slackened. I couldn’t type or hold a piece of paper, money, a pill. Motivated more by my hand’s weakness than gait change, vacillating, too, between acceptance of disease progression and the desire to walk, I talked with my neurologist. In the past I have asked doctors about exercise options, with similar results as in my two-line play: Yes to a multiple-choice question. This time, with my physical abilities far more limited than before, I was sent to specialized PT. There, my therapist Meg astonished me with her creativity and compassion. She got me walking evenly again, helping me engage my core to hold myself up. In OT, I played with thera-putty and large clips and pegboards, then fine motor work, screwing nuts onto bolts. It worked. Take a bow, Laurie.
Now I am realizing this has taken a turn for the theatrical.
Physical and occupational therapy don’t always form a straight arrow to recovery. As I grew stronger, the work got harder, and I pushed beyond my limits after 2 minutes on a treadmill. I slumped into a chair, eyes glazed. Meg brought me a cool washcloth, and I said, “Thwrank you. That’sshhhh wreealy nriyce. Feewrls good.” Hilarious to hear my own drunk-talk, but alarming, too. Meg suggested speech therapy, which followed.
Graduating from PT and OT was bittersweet. It was a safe, gentle form of exercise with a new friend who could help if I overtaxed my body. At a time of year when people resolve to exercise, I want to, but I fear my own boldness will harm me; in the fortnight between writing my first and second draft of this piece, I literally stepped back into my old gait. It’s time to inflate the balance ball, go back to those PT exercises that helped before. Time to try that adaptive yoga class Meg mentioned in her email months ago.