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This article is written on the gracious
invitation of Suzanne. She invited me to highlight some of the turningpoints
in my journey from being born with Spastic Cerebral Palsy to leading a productive and fulfilling adult life.
When Suzanne suggested I might submit
a part of my story of being born with Cerebral Palsy to her newsletter, the most challenging thing for me was where to start. There are almost as many significant aspects of disability and perceptions of disability as there are people, and their families, who are challenged with them. So, where along the paths of life do unique aspects and intimately personal experiences of disabily cross into empathetic understanding? And, where does understanding become the bridge to inspire inter-reliance in relationships and personal self-esteem?
I was sitting with these questions within myself, when a friend asked me what was it like when I was told I would not walk without crutches? Here we have an interesting beginning. I was never told I would not walk without crutches; I was never told I would walk without crutches, either. What I was told always was "someday." This ambiguous state of affairs put the most tantalizing potential of my life in perpetual Limbo. With each of five orthopedic surgeries--with each evaluation by my doctors I was left wondering how long I would have to wait to know when someday was.
As frustrating and heartless as it seemed to me in those endless moments, there was really nothing else, in integrity, they could tell me. Cerebral Palsy is a catch-all term for an incredibly wide range of phyiscal, and in some cases, mental challenges. Each person faced with the condition interacts with it differently for a variety of reasons, and this makes outcomes highly unpredictable.
I was nine years old when it occurred
to me over a particularly trying stay in the hospital that "someday" translated more concretely into, "we don't know." At the end of a particularly memorable confrontation with God, I came to the distinct conclusion that if "they," meaning anyone and everyone moved to talk to me about my prospects for walking independently, could not really say--then I was simply going to have to determine when . . . and also what "someday" would mean for myself.
If this may not seem too practically applicable from the objective, adult perspective--I am here to tell you even as I reflect back on it today, this shift in perspective out of "I don't know," came as a huge energetic relief of the psychological weight of the question which had been hanging over me since I could remember; and it also gave me an internal sense of cause to set my own goals to shoot for.
This sense of self-referral in goal-setting was a very big deal, and it is a frame of reference I still rely on today. Before I came to this point within myself I dutifully went to my physcal therapy, and put my braces on every day because I was supposed to, and it was obvious to me that these actions were supposed to help--even if I really didn't have a clue how. I remember time and again looking into the earnest eyes of my therapist imploring me to put all I had into what we were doing. To me, it felt almost like pointless drudgery akin to a kid who is really not into piano lessons.
There really wasn't a way, from the angle she was trying, for me to "get" it that every effort I might make with her increased my potential to successfully navigate the able-bodied world in which I would, "someday" very much long to be independent.
A couple empowerment reflections here: First,I did meet one very dear friend who had just about the same level of C.P. that was my experience. But she walked independent of crutches, where I did not. I walked with two Canadian crutches from the age of four, until I was 18. I learned from her mother that one sure-fire way to inspire a child to "get" the value of physical therapy at the level of driven participation is to give them challenges in play that motivate them to stretch physical limits while the stretching is not the mental/emotional focus. Her mother got her a doll that was a big as she was; the only way my friend could relate to the doll and move her around was to stand up with her--she eventually walked to carry her. Thus, she never used crutches. Secondly, in my personal experience, and in my experience witnessing a majority of persons with disabilities, what we can do--and how we will do it--can be vastly different when we are by ourselves than when we are with other people. This can be true for a variety of reasons. As I discovered this, I learned for me the biggest reason is that people "with me" in my life physically move much faster than I. Sometimes the marked variation in speed alone can make me stop if I am not paying close attention. It is an internal feeling like it is futile to try to keep up. When I am by myself, it does not matter to me how long something takes, and I just do what it takes until my objective is achieved.
Another question that came up in the course of this writing is how do I deal with the challenges of permanent disability? When I was a very little girl--not quite four years old--someone gifted me with an Almanac size volume
of real-life picutures of American life. It was called a "Big Golden Book;" on the front was a host of Angels ringing golden bells. The last page of the book was a beautiful image of the Christ alone on a mound in Heaven just after he'd risen form Earth. That book, and especially that picture captivated my attention.
My parents were not religious in practice. I would not understand the contexts of the symbolism for years.
But I loved that picture and the spontaneous feelings it brought up in me. I spent spans of time with it, posturing my hands in the way his hands were. Patterning these connections over and over again in my youth created the vehicle for the gifts of Grace to reach me easily, and the cornerstones of a profound and active Faith that has blossomed to encompass spiritual practices from around the world.
Through navigating the challenges on my journey I have learned that the source of my faith is not in any particular symbolism or the teachings that support it. It is the feeling I invest in any aspect of Life I naturally find faith in.
So, when I was 18, my friend who had never walked with crutches showed me that with determination and tenacity there was no reason I couldn't still catch up with her in ability to walk independantly. Because I knew she had come from where I had come from, literally, I was able to believe her, and I did it--I laid down my crutches one day, and just did not pick them up again. Today, I am 43, and as I age I find at times it is safest to use one cane as I am not as pliable in falling as I once was.
The beauty of this principle of self-resource is that these same concepts can apply to anyone, navigating through any challenge. Being a person of self-referral, and self-resourcing is not indicative of an attitude of control; in reality the strongest quality in achieving it is surrender--surrender to knowing and accepting our realistic limitations so that we may realistically know what it will take in the way of planning and/or assistance to achieve our objectives and goals. So long as we have no need to limit what it will take, almost anything can be possible.