“Hope is the worst of evils, for it prolongs the torment of men.” – Friedrich Nietzsche
Rehabilitation is sometimes like dieting. I have specific goals and an overarching ultimate goal, much like the desire to lose twenty pounds (and keep it off) and then be happier, healthier, more acceptable, and more worthy because of the difference in weight. Sometimes, I feel that I have internalized the idea that I will only be worthy, acceptable, happy, and able to ‘get on with my life’ if I overcome my disability. Now that I know that it’s possible, how could I not work until I have retrained my brain, healed the spasticity inside my body, and removed every visible trace of my cerebral palsy from my walk, posture, balance, and figure?
Many people in my life – friends, family, professors, therapists, strangers, and even medical professionals – have told me to accept my disability and accept my limitations. I understand their perspective, but I fear that if I accept my disability, I will permit myself to reduce the work I have done. The idea of not accepting it because it can be overcome has been a strong motivational force for me since I started my therapy. It again comes back to the same idea associated with dieting: if I were on a diet and it made me unhappy and I stopped dieting, I would not only gain the weight back and feel worse about myself, I would berate myself for failing my diet. If I stopped my therapy or reduced my therapy for the sake of accepting my disability, I would feel like I gave up on the opportunity to overcome it and I gave up on the driving force that kept me going when things were frustrating and hard. I have come too far to give up, but I am also working toward a goal that I have inextricably linked to my happiness, self esteem, personal success, identity, and value as a human being. I’ve even said to family and friends, ‘I’m no longer a person with a disability. I’m a person with a fixable problem.’
I tried – for several months in the fall of 2011 – to see my process as ‘working to be healthy’ rather than ‘working to be better’ but this mindset did not instill in me the same drive, discipline, and determination I had when I worked to be better. I don’t know exactly when my mindset shifted from ‘cure’ to ‘health’ and back to ‘cure’ but I realized that the goal of achieving a cure is what makes me work as hard as I do.
I understand that maintaining a diet-like mindset is not the healthiest way to approach the physical work, but it gives me hope, a sense of purpose and meaning, and a stronger sense of identity than my disability identity. It gets me out of bed in the morning even when it sometimes keeps me up at night.