When I was a girl, long before the zoo figured out how to properly house their residents, the exhibit for bears sat prominently near the entrance. The enclosure was made of barren concrete and the caged bear paced endlessly. Back and forth, seeming to stare longingly or hungrily at the crowds gathered outside the bars. The bear's thoughts were a mystery to the visitors and each one saw the bear in a different light. Something about the restless pacing made me achingly sad. Others may have seen only a fierce animal properly contained or maybe they gave no thought at all to the endless movement of the bear on his concrete stage.
An inherent aloneness exists in difference and 'other.' I learned this all too well nine years ago when I started using an electric wheelchair. I might as well have a blinking neon arrow with 'look at the gimp' flashing over my head, following me wherever I go. When I was a 'ped' (as in pedestrian) I was unaware of the luxury of blending in to the world of legs. If someone glanced at me on campus or the bus I was just another face carried along by feet. Once the wheelchair became a part of me I entered into the intense scrutiny of difference. People stare open mouthed as I go by.
My job is apparently to assume their good intentions, politely tolerate their probing questions, their inquisitive children, and their intrusions and interruptions. I often enjoy hanging out at my neighborhood coffee shop. I sit in one of their comfy chairs, reading and getting up occasionally to add more cream to my coffee, give in to the temptation of a brownie, or use the little girl's room. Ordinary, normal behaviour, not worth noticing, unless you use a wheelchair. Just the other day two women and a little girl were sitting across the room from me. Every time I tranferred and drove across the room, the girl would point and yell, "look, look at the lady." Her mother hurriedly shushed her and then on my way back to the chair, the girl did it again and then again. I did my best to ignore her, but it is unsettling at best and down right annoying to be under such intrusive scrutiny. Finally, the mother whispered to the girl and sent her over to talk to me. Unbidden and, churlishly, I will say unwelcome, the girl came over and began to ask questions, 'what is wrong with you?' and 'why do you sit in that?' I pushed aside my annoyance and dealt pleasantly with the girl, but really, I am just a person who happens to use wheels instead of feet.
MS is not easily defined. I know a lady who has had it for over 20 years and she has no outward signs. On the other extreme my trembling hands, jerking arms, braces, dark glasses not to mention the chair instantly mark me as afflicted. You know there is something wrong with me, but what exactly? Curiousity is difficult to contain. Then, when you get to know me better, enter into my 'village' and interact with me weekly at church or in the neighborhood, you make up your own story based on physical clues. She must be paralyzed, but quad or para? Why does she have those braces on her arms? What should I say to her?
Friends and family do their best to 'read' the clues; a yawn, or a grimace, or my answers to their questions and create their own story about the state of my MS. When they ask how I am; I simply don't know how to answer. Are they asking how I am physically compared to five minutes ago, last year, or back when I only dealt with the ordinariness of the every day. Do they want a detailed run down or will their eyes glaze over. Do they recognize that certain symptoms are my constant companions.
Recently I tried to use statistics to track 'how I am' in an effort to better answer the question. My husband is a statistician and he helped me write formulas and enter data into a spreadsheet. My plan was to assign, on a one to ten scale, a daily record of my fatigue, pain, weakness, and other symptoms. Quickly our efforts bogged down and eventually came to a stand still when I realized my base line, that is my -0- is impossible to define. Is -0- me on my best day right now, some point in my past, or is -0- how a healthy body should work. It is like asking a woman to define pain before and after childbirth. She might have thought breaking her arm was the worst pain ever until that 10lb baby makes an entrance. From that time on she has to quantify pain in a entirely new way.
This public isolation, the reality of living with a disease that is on prominent display, creates a life that is both open to endless scrutiny and shrouded by an impenetrable fog. As I write this the pain in my arms is soaring and I find an occasional tear trickling down my face. But, if you looked at me with my headphones, tucked in bed, you would never know. And, if I tried to explain, do I have the words for you to truly understand?