She sat there, smiling, this wisp of a woman.
Her alabaster skin almost translucent, looking thin enough to flake off like onionskin.
What hair she still had was frizzy, no so much styled as simply left to hang shaggy at her angular shoulders.
Every bone protruded in a way that looked painful, contorted.
Her chest was concave. There was no definition of womanhood, no curves or hips or fullness.
Her movements were not her own — every jerk of the hand was an involuntary action that made eating next to impossible.
All around was evidence of the effort and failure of the simple act of eating — spilled drink, food strewn all over the table and at her feet.
And there she sat, smiling and talking, fully aware of the gawking going on around her.
As she maneuvered her electric wheelchair out of the crowded restaurant and to a waiting van, she paused to let a family pass by. And then she chatted with two elderly gentlemen.
I will never know her particular condition. I will never know what she’s going through, what pain she endures, what she is thinking about when she wakes in the middle of the night.
All I know is how much I admired her. She didn’t let her limitations get to her. What would have been frustrating for most of us she took in stride.
I can only hope of going through my life much like that. I know my situation is much, much different, but if I could only muster the poise she had, gain the fortitude she possessed, I’d feel like a new woman.
I had a friend named Angie who had Emery-Dreifuss Muscular Dystrophy. At the time that I met her it was quite advance and had even affected her voice and she could only whisper… and barely that. She weighed about 75 pounds and she only had limited control in her arms and legs but drove herself everywhere. She had a lift on the back of her van to lift her wheelchair and then she just struggled into the seat and drove and drove. She always invited me everywhere, concerts, dinners, plays. She had a wheelchair but actually used a hov-around when going to shows. I’ll never forget when we went to Murray’s Dinner playhouse and as I voiced my concern to her about her being able to see from our table in the back, she smiled and pushed a button and her seat elevated above the crowd. She loved life and never let her debilitation keep her from doing whatever she wanted. I loved her briefly then lost her as her disease finally worsened even more and took her. I’ll never forget her, and sometimes when I complain about back pain or other things like that, I catch myself and think of her. Sorry to make such a LONG comment. But the girl you saw reminded me of her.