Wheelchair Wisdom

From Chapter 1: What’s It Like Being You? Imagine stumbling upon the Garden of Eden in an abandoned warehouse. That’s what it was like for me entering the Philadelphia Flower Show. It was March 1991, and outside, the skies were gray, the trees leafless. The bite of winter was still in the air. In the Civic Center, the world was transformed into a haven of outrageously flamboyant color. And the fragrance! It was almost overwhelming—a fantasy landscape where every flower, every vine, every leaf was enjoying the fullness of a conjured springtime. I vividly recall my scooter, too. It was clunky and huge (not at all like the one I have today—which is a fashionable, sleek, metallic-green model), but I could steer it and maneuver it with very little assistance. Which meant it was good enough for me. Some months before, I’d taken this scooter on a very significant “trial run” on Peace Prayer Day, a “day of prayer for world peace” event I attended at the U.N. General Assembly Hall in New York City. It was at this event that I realized, for the first time, that people were not staring at me. They did not pay any attention at all to my scooter. What they saw instead was a woman of courage, inner strength, and dignity. My spirits soared! I participated in the U.N. event with a feeling of complete freedom, as if the machine that toted me around did not even exist. And now, here, at the Flower Show, I was hoping that once again I would be able to enjoy the feeling of utter liberation that I had experienced once before. So much in life seems to change—does change—when anyone, man or woman, aging adult or handicapped child, becomes wheelchair bound. That designation in itself, “wheelchair bound,” speaks volumes. The wheelchair binds us. It becomes our sole means of transport, the wheels we rely on for motion, the position from which we see the world. Even though the wheelchair provides mobility, we immediately begin to think of ourselves as held back by its limitations. That, at least, had been my first experience of life in a wheelchair. I had raged against its confinement, cursed the illness that forced me onto its wheels. I had regarded the wheelchair as an enemy. It had affected not only my self-perception but all my relationships. People stared at it, or tried hard not to stare at it—yet transmitted, with their averted glances, the pain of embarrassment and the fear of contagion-by-association. I had felt as if they would never be able to see my identity apart from my wheelchair. Everywhere I went, it seemed, my wheelchair presented as many problems as it solved. It couldn’t climb stairs. It couldn’t get through doorways that “normal” people could stride through without a second thought. My wheelchair needed ramps, electric doors, the constant attention of a friend, a family member, a caregiver, my husband Michael, or the spontaneous assistance of kind strangers. I was part of my wheelchair, and my wheelchair part of me. It had become a constant reminder of entrapment, of my differentness. And yet… Something very important had happened when I attended the U.N. event in that clunky scooter. It seemingly disappeared from under me. Yes, I was still the same seated figure moving through a crowd in a motor-powered vehicle. Yes, all my physical limitations were just as they had been previously. But my mind, my soul, and my feelings became liberated. I was free, and totally caught up in the experience of joining in a cause I believed in, as an equal among all those who surrounded me. Now, as Michael and I rode the elevator down to the floor of the Flower Show, I wondered whether I could have that feeling again. In the years before I was diagnosed with multiple sclerosis, I had always excitedly anticipated the Flower Show. I loved the thrilling profusion of blossoms and the palette of infinite colors that greeted the visitor descending from a March landscape of beiges and grays. But that experience was in the past, before the diagnosis, before the wheelchair, before I had allowed my identity to change from “normal” to “handicapped.” Could I reclaim the sense of freedom I had felt in the years before the beginning of life in a wheelchair—the freedom I had tasted once again, so briefly, at that U.N. occasion? Would I be able to forget the machine that allowed my movements and, instead, let my heart, my soul, and my imagination be absorbed by the visions of springtime that would surround me at the flower show? Could I just be Linda and not Linda-in-a-wheelchair? And yes, it did happen! I forgot about my scooter. It wasn’t part of me. I forgot about my illness. It wasn’t me, either. I was simply there, relishing the present moment. After this pivotal realization, I found my whole world beginning to open up. I could easily plan outings to concerts or museums, or even to the mall. I began to travel—to New York City, Sarasota, Florida, the steep hills and inclines of San Francisco, and eventually to Israel and Egypt. And I made discoveries that, I believe, apply to anyone who is wheelchair bound. As difficult as it is to let your guard down and take a look at what’s going on inside your heart, I can give you this reassurance: *There are a variety of strategies you can use to help you through it, and to make it far less frightening and painful than you might expect. *I’m not saying it’s easy to look fear in the eye, or let the rage course through your body, or feel that place inside where your heart is broken. *But with a good plan in place, and some good techniques you can use again and again, you can do it. I promise you that, in the end, you’ll find it’s a lot easier than waging a life-long battle of trying to keep your emotions at bay. *Best of all you’ll open your heart to the peace and happiness that emotional freedom has to offer—and that you so richly deserve.