I am not certain when I began to change. But one incident in particular stands out. Michael and I were driving along the Pennsylvania Turnpike when I suddenly had to go to the bathroom. This was no time to be choosy, so we pulled into the first rest stop we saw. We raced into the parking lot, quickly assembled my electric scooter and I sped into the fast-food restaurant in search of the bathroom. Once inside, I was faced with the embarrassing task of having to ask a total stranger for help. Michael could not help me, of course, because it was a public restroom, for women only.
It took all the courage I had at the moment to overcome my sense of humiliation and tell the man at the counter that I needed help in the bathroom -- and I needed it immediately. He beckoned a young, dark-haired woman who was bussing dishes. She dutifully followed along behind me, holding the door to the bathroom for me as I scooted into the tiny, tiled room. When we got inside, I soon discovered that my helper didn't speak English, and I didn't speak Spanish, which turned out to be her native tongue.
Somehow, through hand signals and body language, we managed to communicate with each other enough to get me on the toilet. I then asked her to give me some privacy but to come back soon. She left, returning within a minute or two with a glass of ice water. As she held out the glass of water for me to take from her, I stared at her in disbelief, my incredulity mixed with frustration, humiliation, and annoyance. This glass of ice water seemed so totally inappropriate! What was she thinking?
A part of me wanted to lash out at her, to make her the target of all the pent-up frustration I felt -- at the difficulty of finding a wheelchair-accessible bathroom in the first place, at the embarrassment I had to go through just to take care of such a basic physical necessity, and above all at having a body that would not do my bidding.
But in that moment, something very important shifted within me. I saw that perhaps I actually had a choice about the way I looked at the world around me. I found that, beyond my irritation, this awkward encounter in the bathroom of a fast-food restaurant at a turnpike rest stop became an opportunity to see life very differently than I otherwise would have. It suddenly dawned on me what the most immediate problem was -- I needed to get to a bathroom fast. And by focusing on that, rather than on all the problems around my physical condition, I felt the emotional distance between me and my helper dissolve. Apparently, something I had said led her to bring me a glass of ice water. However, I believe it was ultimately her compassion and generosity that bridged the language gap.
Suddenly I saw the humor in all of it and I laughed out loud. Here I was, on an obstacle course of ramps that challenged me to defy gravity, wrestle with heavy doors, maneuver around curb cuts placed directly in front of parking places so that there was inadequate space to get through in my wheelchair. And then there was this ladies' room, located one flight down from the dining room, and I was unable even to go to the bathroom by myself, forced to ask for help from total strangers.
As if that wasn't enough, my helper and I couldn't communicate verbally because we spoke two different languages. Clearly, I was surrounded by obstacles that indeed had the potential for creating a lot of frustration. But the total absurdity of it somehow helped open my eyes to my own humanness and to the kindness of this young woman who really was doing her very best to be helpful. Somewhere in all of that was a lesson, an insight that allowed me to begin taking a fresh look at the meaning of my life. In spite of our mutual awkwardness, there was something very touching and precious and valuable about the moment. In our bumbling, clumsy, embarrassed efforts to attend to the most basic of human needs, our hearts had joined.
As Michael and I got back into the car and sped on our way, I recognized that something important had happened back there. I had been able to see my life beyond my thoughts, judgments, expectations, and beliefs, breaking apart the presuppositions that had come to rule my life, shaping my feelings and my actions. I felt almost ecstatic, recognizing that this awareness provided me with a freedom that was indeed profound and heartwarming.
Adapted from You Are Not Your Illness: Seven Principles for Meeting the Challenge by Linda Noble Topf (Simon & Schuster, 1995), pp 28-30.
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