I would like to remind people that they do have the right to remain silent and that in many circumstances I would love for them to please use this right. Today I was waiting at the end of a typically long holiday line when a woman (I will NOT call her a lady) and her boyfriend/mate got in line behind me. She appraised me and my wheels and I knew I was in trouble. Inside I pleaded with her to use her right to remain silent and not open her mouth, but of course she had to let the ignorance talk.
"A wheelchair, that is a great idea! I need to get one of those! Standing in these long lines just makes my legs so tired." Allow me to state she was in her 30s or 40s with no apparent health issues as she left her mate in line and literally ran out to her car and back later on.
I spun to face her full on and very coldly and evenly replied "I'll gladly change places with you."
About 5 people around us started laughing as I spun myself back around facing forward in a "kiss my axel" movement. I think they were laughing for two distnict reasins: 1) relief that I had handled the situation without a need for security or police involvement and 2) the sheer ignorance of her comment being succinctly put in place.
Really, even as the exchange was going on a part of my mind was in complete shock at the level of ignorance and lack of tact she was giving voice to and the fact that it never occurred to her that perhaps the wheelchair was more than just a portable seat.
The saddest thing is I don't think the encounter even made it into her awareness, and I have no doubt that she will without hesitation make an equally ignorant and inappropriate comment in a similar circumstance given the opportunity. You can not force someone to become educated, only provide them with the opportunity for enlightenment. that said, you can also wish for them to keep their ignorance to themselves!!

It is pretty rare for a movie to hold my attention from beginning to end and actually have characters that I relate to on a personal level. This is especially true after the past year of dealing with this illness and growing to detest most of television and movies after spending hour upon countless hour too sick to do anything other than half watch the glowing box of mind numbing pointlessness. So when I write that I watched a movie today from beginning to end, and even paused it when I needed to answer the phone or force myself to drink something, that is saying something very powerful about the movie. I watched "The Cake Eaters", a movie I had never heard of before comng across it on Showtime. It is about a teenage girl with Friedreich's Ataxia, which they portray as a terminal illness. She is basically used as a tool for her mother (who can not see her as anything more than her disease) to gain attention as an artist, she is an outsider because to her healthy peers she is a "freak", and she wants to find someone to have sex with her before she dies because she is certain no one could ever love her. I am doing the movie an injustice in condensing it this way, but trying to summarize the emotional plot is difficult. I could completely relate to the girl in the movie because I have felt my entire life like "an other", and for years like I was somehow "less than" because I was born with a body that did not work according to factory specifications. I remember those years as a teenager wanting desperately and working so hard to hide the differences, the toll it took fighting to not allow anyone to see more of the monsters in my life than was absolutely mandatory. I have also felt like at times people have used me as a prop to garnish attention for themselves or been unable to see me as anything other than my disability. That feeling of exploitation, of being made inhuman and into nothing more than a diagnosis is something you never forget and that you rage against even if you rage silently inside. Most of all I related to her fears of never knowing love and not having enough time in life. I am all too aware that it is going to require someone beyond the definition of incredible to be willing to risk loving me, to see beyond all of the brokenness to see the whole person that I am beneath the surface, and to choose to enter the chaos that is my life. Whether or not such a creature exists is a puzzle to me.
Yet my biggest relation to the film was the sense of urgency, the sense of needing to live now because time seemed to be so elusive and so flimsy, like a vapor fading in the sunrise. I have a relatively creative and imaginative spirit, and I can see the possibilities where others see only the impossible. So it has always been frightening to me that in my own life I am unable to imagine myself growing old. I want to imagine it, I want to spread out my life like a time line and laugh at the little old lady with gray curly hair sitting in her rocking chair but I don't see her. When I think of my life and imagine it, when I dream of the future, it all becomes a haze around middle age and I can go no further. It is truly impossible for me to imagine growing old. This creates a sense of urgency in my own life, the need to live in every moment and to not waste this gift of life on the inconsequential things because I too can not sense a life that stretches into enough tomorrows to feel comfortable. I probably sound morbid and overly dramatic, like I am trying to work this thing for all I can, but anyone who knows me knows that I very rarely reveal anything other than the lighter side of this journey. I protect those that I love from the harder aspects, from the monsters that sometimes torment me at night and the harsh realities that have settled into the core of my being years and years ago. I don't waste time feeling sorry for myself too often because that is time I can not get back, and that time is a precious commodity. I am just processing all of these thoughts and emotions that arose from this amazing movie and seeing so much of what I have experienced - in terms of emotions and such- portrayed so incredibly. When I go to sleep tonight and dream of any countless dreams, I wish it would be dreams of growing old and rocking chairs and gray hairs. I wish I could even just imagine.