So, there I was, finished with physical therapy. As if the 12 weeks I was afforded by my health insurance had made some miraculous change in me… Sorry to say, it didn’t. I wobbled, banged, crashed, stumbled and fell just as much as ever. I was so consumed by trying not to wobble, bang, crash, stumble and fall that that’s all my waking, and even sleeping, hours could think about. There was no room for anything else but to think about it, a lot of noise…. If anything, the one main thing I got out of physical therapy was “feel your feet”. That was in an attempt to help me zone into where at least my bottom end was!
By now it was the end of January and, in my mind, all I could decipher was that I had 19 years, 8 months to go to reach that magic 20 years when “most people become accustomed to their condition”. Seriously, 19 years, 8 months and I was finished with therapy? That just didn’t seem right to me, how could I be finished when I still could barely get around my own home? Then it hit me. I recalled asking the physical therapists to take me outside and work with me, in the real world, however, that wasn’t something in my PT protocol. So, as I thought about that I realized that each time I had left the PT clinic that I had been working in my real world therapy all along just getting to and from the clinic! I decided from then on my therapy was going to be on my terms and with exercises that I found worked with me. I gained control! Well, let me tell you how that particular thought changed my direction! Thinking back on this I now understand that this was the first time that I realized my disability was not going to control me, I get to control IT! It was my first unconscious attempt of turning down the noise of disability.
I began my real world therapy with a ramp made from a piece of wide wood that propped up on the bottom step of the stairs going to my homes upper level. I would stand on that ramp with what I guess was a 20 degree angle. I worked and worked at trying to stand on that ramp in an upright position. Not a very easy task to begin or one that could even be mastered in 6 or 12 weeks, it took a much longer time than that. But I stuck with it. I positioned the ramp so I could hang on to or grab the door frame when I had to, which was a lot. This adventure was tremendously difficult because my new “normal” way of standing, walking, or sitting was with my upper body leaned forward so far that I felt as if I were nearly aligned parallel with the floor. I also could not hold my head up for any length of time. Little by little it would drop until I realized that my chin was almost resting on my chest. I felt like one of those toys that have a push button on the bottom that when pressed in the toy just crumbles down into a pile. I felt like someone was pushing my button all the time. I was like a noodle from the waist up.
Another of my real world therapy sessions was walking outside – without using my cane. Not the safest thing for me to do, but neither was driving myself to the doctor on the first day all this happened to me, right? I then lived in the small village of Cambria, Wisconsin. It was a lovely area surrounded by farms and beautiful country roads. The village nestled between two big slopping hills and walking up and down the sidewalks was a workout even for someone without the challenges I had. Nonetheless, I mustered up the strength and began first with walking around blocks near my home where it was not quite so challenging, being on the top of the hill. It was, however, extremely challenging to walk, in any way shape or form, a straight line. I must have looked ridiculously drunk! As a matter of fact, I later heard the word around town was that I must be enjoying quite a few libations before venturing out. See, no one really knew what was going on with me, yep, even in a small town like Cambria. There were my neighbors and a few others, but other than that, at the start, no one had a clue.
After I heard about the drunken Cheryl, I started carrying a bottle of water in a brown paper bag… that’ll teach ‘em I thought… I had to interject humor anywhere I could those days.
Even though my optimism shined and my humor tickled funny bones, I continued to have a very difficult time personally finding anything funny at all. I thought I was controlling things but really, all along I was just making things up, I made believe. I became an expert in making believe… even though I had began devising ways to compensate for the way I was, and beginning to make a dent in the noise, making believe somehow made the noise louder in other ways. My body, my mind, my environment, my everything was a mixed up composition played by a symphony of out of tune instruments – and I was the only one who could hear it…