#evidence

When I started my rehabilitation in 2007, I worked with a massage therapist who believed that I couldn’t get better. She – and every other massage therapist – was trained to believe that cerebral palsy is incurable and to help patients with the condition manage it (and everything associated with it) rather than cure or overcome it. She knew of my own intentions – and she watched my body change as I went to the gym and did pilates – but she held firm to her entrenched belief that I would never get better. She also told me something I did not want to hear that I have now faced and accepted: I will have to work on this for the rest of my life. There will be no endpoint where I can say, ‘I’m cured now and all I have to do is maintain it.’ My process is not the same as waiting for a broken bone to heal or recovering from surgery. At the time that I met her, I wanted to be ‘out of my disability’ in three years and then live the normal and well-functioning life I always wanted, but she was always straight with me in that I would have to commit to the therapy for the rest of my life. I have since accepted this perspective and I live it every day. 

Three years into my work with her, she still believed – even though I had made huge progress – that I would never be fully better because my disability affects my nervous system. This is what she was taught in her medical training (at the college she attended, the therapists are trained in a vein similar to nursing students). Her treatments are not relaxation massages. They are deep tissue, therapeutic, sometimes painful rehabilitative treatments. She previously worked at a walk in clinic and now works in a physiotherapy office. I’m amazed that the progress I have made didn’t change her mind or shift her perspective even a smidge, especially when she – better than almost anyone else – could see the concrete changes in my body: the decrease of the curve in my spine, the evenness of my pelvis, and the strength I gained in my core through swimming and pilates. That evidence wasn’t enough for her to believe that I could get better. 

My massage therapist did, however, give me advice that other people hadn’t: I have overcome enough to be able to do most of the things I want to do, and that even though I wish I could have the options of going skating with friends, going for bike rides with my family, or downhill skiing, I shouldn’t push myself to do those things – or use them as the strongest evidence of being cured – if I don’t want to do them and if not doing them doesn’t severely limit my life. She’s correct in that sense, especially now that I’ve begun practicing yoga. I realized recently that I have equated ‘curing myself’ with ‘easily being able to do every pose in the bikram yoga series because that’s what normal people can do.’ I realize now that this ambition is not only unreachable, but also almost illogical; I have never met anyone who can do every pose perfectly or easily; I know teachers who still struggle with certain poses and women who practice bikram daily who still have challenges with the series. My yoga teacher who runs the studio at which I practice told our class that it took her five years to accomplish the balancing stick pose. This is proof to me that even normal, flexible, strong, and able-bodied people have physical limitations and things that they can’t do or still have to work on. 

I can’t skate. I can’t downhill ski. I can’t ride a bike. I can’t run quickly down a set of stairs. I have been using these abilities as markers of my own cure because I believe that they are what will normalize me. The functional abilities that I do not have and would like to gain include walking down stairs unassisted, using an escalator without help, and carrying things and walking without fear of falling. I also want – more than anything – to remove any visibility of my disability. 

I understand that many people who are considered able-bodied and normal can’t do these things – and can’t do other things that I can do – but these skills are the ones that interfere with me living my life and functioning as a person. I suppose, all things considered, I’m doing quite well. As my massage therapist told me: I don’t have to force myself to learn to downhill ski – as evidence of a cure – if it isn’t something that’s important to me. I suppose her message was to strengthen and work on the skills and abilities upon which I would like to gain and improve. I agree with her, but we still have differing perspectives on the idea and possibility of a cure. 

Other people have disbelieved me when I have told them what I am working towards. Other people have doubted me, put me down, and shut me down. I understand why they do and it used to shake my confidence and my trust in the process. It doesn’t anymore because I have accepted that this is part of life. There will always be people who doubt me and disbelieve me, but I know I can get better because I have gotten better. It’s only when I worked hard enough and actually saw and felt results that I fully believed that I could be cured, but I believe now and I will for the rest of my life. I understand that my story cannot change everyone’s mind or everyone’s thinking, but I have done enough and come far enough to know that complete change and a better life are possible for me (and anyone else who is willing to do the work).

Four months after I started intensive rehabilitation therapy in Toronto, I turned on my webcam while I was talking with my best friend and showed her my walk. She and I hadn’t seen each other in four years. She noticed the difference in my walk and presence immediately. She said my gait was better and I carried myself with more confidence, and I had made this change in only four months of solid, consistent, dedicated, effective work. I said to her, ‘This is REAL. This is HAPPENING.’ It was then. It is now. 

The cure is real. The cure is happening.          

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About Norah

writer. aspiring editor.
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