The winner of our first Independence Expo contest is a multi-faceted 49-year-old single mom of three sons who lives in the small college town of Wise, Virginia. A native of the UK, Clare Willson is a scientist by training who followed her heart into the field of costume design for the local theater groups, by which she made her living until multiple sclerosis made it difficult for her to use the tools of the trade. MS has rendered the left-handed Willson paralyzed on her left side. “I’m very creative,” she says. “Costume design was how I expressed myself. I could have done it forever and ever. Writing is my new creative outlet.” Willson has taught herself to type with one finger of her right hand—just another sign of her fierce independence.
Congratulations to Clare, who in addition to having her essay published in Action, has won a $250 gift card from American Express. And thanks to all who participated in the Independence Expo Essay Contest.
Independence Is Priceless
By Clare Willson
Strolling down the driveway to the mailbox, bending down to lace an untied shoe or pull a weed, or simply writing a shopping list. Life is a conglomeration of mundane, everyday tasks and I took them very much for granted until my ability to do them was slowly eroded away.
MS sneaks up on you, gradually diminishing mobility and mental function. Each new symptom tried to hold me back, but I would look the demon in the eye and say “No Way.” When my left foot gave up on me, I got a foot brace to remedy the foot drop. When my left hand could no longer grasp a pen, I learned to write, brush my teeth and dress myself with my right hand. I had to devise new strategies to carry out ordinary tasks.
I progressed from cane to walker to scooter, and finally power chair. When I was wobbly but could manage to walk a few steps I used the scooter, which attached to a lift on the back of my car. In the next phase of my life, when legs were unsteady and I could barely shuffle, I bought a ramp van to accommodate my power chair. Behind the wheel I was “normal.” I felt unspeakable joy at the travel possibilities.
I have skydived, flown above the trees in a hot air balloon and visited Niagara Falls. All were amazing and exhilarating. It would have been easy to stay indoors in isolation and fear. My very essence and personality would have been sucked dry by this disease if I had let it. Fortunately, I am obstinate as a mule. Now I unscrew my favorite red lipstick with my teeth and apply it. I wear ridiculously high heels in my wheelchair. I dress with one hand. I open a jar of jam using my knees and one hand. Hey, whatever works! There have been potholes in my “Path of Independence,” and there will be more, but I am proud of myself.
Independence means I am in control and gives me the freedom to still be me.
