Phase Three: Becoming Bionic
Days four and five of my first week in the device were kind of a blur in the sense that my dad had left to go back to work and I was left to decipher all of this on my own. I began to worry about the idea of taking on this new device; what was I going to do when I returned home? How was I going to know if I was walking well, the way Ryan and Jared want me to? The hardest part of using the device in these first days was not putting in on and going about my day—it was the task of having to establish a new foundation, a new understanding of what it meant to walk and move my body. This new awareness felt confrontational at worst and exciting at best. Every time—and maybe this will lessen one day—every time that I think about my CP and its presence in my busy life it feels like an absolute impediment or an inconvenience that I do not want to deal with. Though it is the one constant that exists, it tends to have this monstrous ability to overtake my day when I let it. I believe it is because it is our human nature to maintain control over our lives (and possess such especially over our bodies) so CP, in this sense controls me and my emotional capacity for change. I have no choice in the matter when CP physically impacts me more or less some days because that is my typical day.
It was Thursday and I was tired. I worked my way slowly, slowly into the clinic and didn’t feel prepared for the day ahead. My disability was ever present and I felt overwhelmed by this change, the one I wanted so badly. All I could think about was how I was going to manage working full time, completing my graduate school applications, and taking on my strength training program for the device. But as the day went on, I knew this was energy wasted—I always figure it out and I knew this was just another challenge (and I had to be up for it, no turning back now!) Once I shook off those anxious thoughts and had a nice talk with Ryan I came back for day five with my game face on. We finished my training week with some squats and a circuit that I could ideally do in and out of a gym.
4 months later….
As the weeks and months carry on, I realize—I am still realizing that every day is different, every step feels new and somewhat foreign but I trust that it will become more and more familiar with each “tweak” that I work on. When I feel like I need to refocus, I’ll dedicated some days to just one aspect of my bionic-enhanced gait: “smaller steps, toe out, knee straight, heel strike” Each cue has its place and though the goal is to bring them all together into one smooth stride, I am okay with taking it slow. If I am going to wear the device for a lifetime, a year, maybe even two years of this doesn’t seem so bad. I have days where I am walking SO FAST! And others, where my brain seems to forget all of my training. I have to remind myself that I am undoing 20 or so years of my brain and body adapting to my CP walk. And I look forward to the day when all of this feels automatic—when I won’t have to think about walking. I am not sure when that day will come, but I am patient and certain that this is still one of the best decisions I have ever made for myself. My body is stronger, faster and more powerful than it’s ever been. It has been four months and I actually feel muscle soreness in places I never thought possible! My muscles are waking up! They are activating and responding to my new way of moving and I don’t worry about atrophy or weakness like I had with all other treatment. I’ve done Botox, serial casting, tendon lengthening and AFO’s and none of it compares. I am making progress, not simply “loosening up” temporarily until I become unbearably tight again. Thanks to my ExoSym, I am more mobile and more confident of my body’s abilities than ever before in my entire life.
TO BE CONTINUED…