I haven’t really ‘taken the next steps’ with my rehabilitation therapy in the last year because the next steps are the last steps. I’ve been told that I know what I need to do to take the last steps to heal myself and recover completely but I won’t do it because I don’t want to lose my identity. I think this is true but not in the way people would expect. It’s not that I don’t want to lose my disability identity. I don’t want to lose my cure identity. My perspective regarding my disability has shifted from ‘incurable condition’ to ‘fixable problem’ and I draw strength and purpose and meaning from the fact that I can ‘fix myself.’ My work to cure myself gives my life a sense of direction and fuels the desire to keep going and keep working. I have never worked out or done any other physical exercise with the intent of being healthy (or as part of having a healthy lifestyle). Before I started working to cure myself, I danced because I loved it and went to the gym and the pool to lose weight. I never developed workout habits for the sake of general health and fitness.
My cure is now my identity. If I completely cure myself, my workout paradigm would – out of necessity – have to shift to ‘health’ rather than ‘ridding my body of my disability’ which is not as motivating for me. I know for a fact that I would not have the will and the strength to maintain the work if I didn’t do it with the purpose of curing myself and I would, ultimately, lose what I had gained and would have to again work to cure myself in order to normalize myself and my body.
I recently watched a video of a young boy with cerebral palsy who discovered swimming as a form of athletic therapy. The really moving part of the story was not the fact that he got better with the therapy, but that swimming unlocked his potential, showed him his own physical and emotional strength, and gave his life purpose and meaning that it didn’t have before. He grew up feeling marginalized and incapable and frustrated. He was sad that he couldn’t do things other children could, but he gained faith in himself when he learned about the Paralympics and started athletic training with the intention to one day compete in them. It completely shifted his perspective about his abilities, his life, and his place in the world. It gave him a sense of belonging, focus, determination, and worthiness that he’d never had before. That was the memorable and moving part of his story. In that way, he wasn’t ‘disability inspiration.’ He was the personification of the message to just ‘get on and do stuff’ and to create a meaningful life.
My physical therapy gives my life direction and focus that I didn’t have without it. It has had a profound effect on every aspect of my life and has transformed the way I live in the world. That’s why I chose the handle transformingeverything: this isn’t just about physical transformation. It’s about changing absolutely everything. I even feel uncomfortable telling people now ‘I have a physical disability’ or ‘I have a physical impairment’ because I feel that it describes the person I used to be rather than the person I am now and the person I have worked to transform myself to be. I feel that I can’t tell people ‘I’m a person with a fixable problem’ and I haven’t yet developed a language that accurately (succinctly) encompasses or explains my condition, work, intentions, and progress, but the changes I have made to my body have also affected how I feel, how I see myself, how I relate to other people and how I move through the world. In five short years, I have developed a new identity, and I would have to further develop another one if I walked out of this one, physically and metaphorically.
I’m a bit conflicted – and have been for a long time – in that I am willing to both work and be stuck. I don’t know what my new identity would be if I didn’t have the one I have created because I still don’t think I would consider myself a ‘normal person’ (though that’s what I try to be and would like to be). I don’t think I will ever consider myself a ‘normal person.’ I think a lot of this is just general ‘growing up’ and things that everyone faces in life. Everyone creates worlds around themselves and creates their identities and place in life. It’s sometimes hard for me to discern between what is part of ‘life as a person with an impairment’ and ‘life in general.’ What’s just part of life and what’s a direct result of having a physical disability? There are times when I can’t differentiate between the two.
Some people can’t stand to be doubted. Some people can’t stand to be left alone. Some people can’t stand to feel ordinary. Some people can’t stand feeling dependent. I can’t stand feeling like I don’t matter or that what I do doesn’t matter or that I don’t matter to someone else. My therapy has helped me feel like I matter because the work matters and the opportunity to better my life matters. June Carter Cash used to say, ‘I’m just trying to matter’ and I can relate to that. My intention and work to better myself give me a stronger sense that what I do matters and who I am matters. And that’s what’s important to me.