Stewart lives in a small room on the second floor. The single window faces down a tree-lined street, but the blinds are always closed. A bed, a chair with a small desk, a dressing table with a large mirror and big screen television take up virtually all of the floor space. The microwave and bar fridge are hidden behind the bifold closet doors, together with his meager wardrobe of well-worn shirts and jeans. He only leaves the room once a day. It is to go to his early morning job delivering the newspapers for a few hours, alone. It is easier that way. He doesn't have to explain any of his decisions, like choosing to eat his meals alone while watching the news, surfing through his chosen channels, staring expressionless at the faces of angry people in far-off places he has never seen. Stewart has lost his desire to go anywhere. Each night he sleeps a dreamless sleep, accepting his adequate view of the world from the safety of his self-confinement.
Parkinson's disease can to that to people. One's world closes in, collapsing to some small, secure surrounding. The world outside becomes more frightening as strangers, and even friends, point at us with their eyes, detecting our tremors, our stiffened, slower movements or our shuffling steps. We reluctantly carry this disease like a placard, announcing its presence for all to see. Pity, confusion, even fear, occupies the awkward glances that complicate even the most casual conversation. Our world shrinks, if we let it, leaving room for very little, except ourselves. And we become the disease.
Parkinson's disease can to that to people. One's world closes in, collapsing to some small, secure surrounding. The world outside becomes more frightening as strangers, and even friends, point at us with their eyes, detecting our tremors, our stiffened, slower movements or our shuffling steps. We reluctantly carry this disease like a placard, announcing its presence for all to see. Pity, confusion, even fear, occupies the awkward glances that complicate even the most casual conversation. Our world shrinks, if we let it, leaving room for very little, except ourselves. And we become the disease.
But the world is more than our plight and pain. It is a vast and varied ocean of humanity, often fathomless in its determination to endure. The world is a living place, unsafe for far too many, where men and women, boys and girls, 7 billion of us, cling to the meaning of it all. We people with Parkinson's have lost something critically important if we focus exclusively on ourselves and our own circumstances.
We all have a worldview. Although rarely discussed, it drives our dreams and aspirations, it informs our most important decisions. It is a pair of glasses through which we see and interpret our world. The unfortunate reality is that most of us, having only seen only a very small portion of the world, rely on the media to supply our "glasses".
To the surprise of some I have no burning desire to see more sites, to play the tourist. The photos and memories that I cherish are of people, not places. It is stories I want to hear, and look into the eyes of the person who does the telling unconstrained by TV lights and boom mikes. I am less inclined to see the world than I am the people who live in it. And so it is this desire that frames my next and biggest adventure.
Going around the world. Exotic as it may sound, it has been my dream for as long as I can remember. And now, on May 1, I will be realizing that dream, embarking on the journey of my dreams. And when I return, 75 days later, I will have discarded my current worldview, replacing it with one filled with faces and words of people from 14 different places. It will be something I can share with Stewart and others like him who give up on daring dreams coming true.
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