At first glance, I look like a baby-faced thirty something woman in fit health. Blonde hair. Blue eyes. Beauty is relative. Sometimes it surprises me how long it takes for someone to notice. Other times, I am taken aback how quickly others can become aware my unsightly, mangled hands. “Boutonnière” and “Swan Neck” deformities, the occupational therapist told me.
Diagnosed at age five with the adult form, rheumatoid arthritis has attempted to strip me of my quality of life. I can remember at age nine crying helpless in a recliner chair. The chair I would spend most of my school days. My mother, experiencing utter desperation, called Aunt Jacky. My mother and aunt stood in front of the friendly orange recliner in a state of arrested panic. In deep pain, I wailed my lungs out of my torso, oblivious to their own emotional injury.
Every day is unpredictable when you have arthritis. My body is like a walking stock market. I dread the day of the crash. Some days I can walk quite far. Other days, walking is simply the goal.
One day grocery shopping, I was packing my bags in the car. Mind you, I was in a disabled parking space. Suddenly, a dark-haired middle-aged woman comes out of nowhere and began to attack me with consecutive questions. “Do you have cancer?” “Do you have M.S.?” “Where is your disabled parking sign?” After digesting what just happened, I tried explaining that I have severe rheumatoid arthritis and motioned to my disabled license plates. She wanted to shut me out for some reason and drove away with a furious wicked witch expression on her face.
For that day, I was the perfect target for her misery and hostility. That incident bothered me to the point of semi-obsession. I repeated the story to my family and friends as though trying to rid a trauma. I began to rehearse how I would respond to such an incident in the future. My friend Jeff would listen to my rehearsals, thoroughly entertained by my passionate mini-play. “Yes, I’m going to come right up to them and display my hands directly toward their face and inquire, “Would you like a pair of these? Be glad you don’t have them.’” I would play it out in animated face and voice, eyes wide open, waving my hands. There would be a festival of post-rehearsal laughter. Out of my “need to be heard” and further self-analysis of my presentation, the rehearsals became less animated so the accuser would be “more focused more on what I am saying”. It seemed as though a boiling volcano loomed under my suppressed “pleasant” voice as I held a smile. The truth is, I was aiming for blatant shock and guilt that soared to the stomach in a millisecond.
My long awaited opportunity came in a drug store parking lot, however, not exactly how I envisioned. An elderly man stated to me as I walked by, “You know, you’re in a handicapped spot.” I was able to scurry to him, a very unique way of running. My hands were lifted to my face. “You see, I have rheumatoid arthritis. In every joint in my body”, I reported. I didn’t ask him if desired a pair of my hands, because he seemed to emit some benign, minor ignorance. We all do. He responded, “I’ve got it too. In my back.” I said, “Oh.”, half with empathy, half with disappointment. There was no apparent shock on his behalf, and if there was, I could not tell. This was not in the rehearsals. Then I told him, “Youth and health do not always go together.” As I drove home, I prayed for him, for his aching back.
I learned that human nature seems to gravitate towards swift judgments, often without adequate information to make such judgments. All of us need to respond a little slower. Respond with love. It is amazing how one awful disease can unfold such good and important life lessons. This I believe.
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