“You can choose to blame your circumstances on fate or bad luck or bad choices. Or you can fight back. Things aren’t always going to be fair in the real world. That’s just the way it is. But, for the most part, you get what you give. Let me ask you all a question. What’s worse? Not getting everything you wished for, or getting it but finding out it’s not enough? The rest of your life is being shaped right now, with the dreams you chase, the choices you make, and the person you decide to be. The rest of your life is a long time. And the rest of your life starts right now.” – Haley James Scott (One Tree Hill)
I have a family member who has a condition for which he must take medication every day for the rest of his life. His life depends on his medicine. He has no choice as to whether or not to take it. I have a choice with regards to overcoming my disability. I can choose to work or choose to give up. I can choose to give my all or only work when I want to. Over the last five years, there have been many times when I have wanted to stop working and just ‘deal with’ my cerebral palsy and ‘live my life’ without having to work so hard all the time. When my rehab started, I approached it from the perspective that I would work very hard with a specific purpose for three years and then I would be completely healed and wouldn’t have to invest the same time or effort into rehab. As my rehab changed, my attitude toward my physical health and my commitment changed too. I realized that I couldn’t look at ‘getting better’ as endgame and that I had to develop exercise habits for the rest of my life, no matter how much better I got. I’d still have to work out every day in order to remain healthy, able, strong, and capable. There is no pill for me to take; even if there were, I would still have to continue going to the gym and to yoga classes to maintain my body. Though rehab and self care are different, they are inextricably linked, and both are necessary if I am to have a healthy body and a healthy life.
I could give up everything tomorrow and still make my way in the world. I don’t have to do this work in order to survive, to see the sun rise tomorrow. My cerebral palsy is the result of non progressive brain trauma; I won’t degenerate like someone who has a disease that makes his or her body progressively worse over time. More than one person – including a massage therapist and a woman whose daughter has severe cerebral palsy – has told me that no matter how hard I work, I will never be better, that I am working toward something that I will never achieve. I know differently because I have made huge progress, and I have learned that everyone will tell me different things based on their experiences and beliefs. I used to let other people’s opinions of me knock me down, but I have learned that even at the very best my body will ever be, people will still doubt me or disbelieve me and what I am working toward.
I used to work with a clinical psychologist who believed that having humility meant completely accepting everything we go through in life and everything we feel. He told me to acknowledge the deepest emotional and physical pain I experienced, but acknowledging it didn’t help me work through it or become his definition of humble. He told me to accept myself exactly as I was and go from there, but the idea of complete acceptance was not synonymous with telling myself I am good enough as I am. I remember sitting on the couch facing him with my hands folded tightly in my lap. “You’re so angry,” he told me. “You have so little humility.” “When will I know I have humility?” I asked. “When you’re not vulnerable,” he responded. I told him that everyone was vulnerable and we all experienced vulnerability in our lives, and that accepting every negative emotion, every unhappy experience, every ache and pain, and accepting my disability would not make me invulnerable or immune to vulnerability. I agreed that I was very vulnerable, but that transforming my anger into acceptance wouldn’t make the challenges in my life any easier to face or deal with. I looked up humility in the dictionary and, the next time he mentioned it, I said, ‘The opposite of humility is arrogance. I’m not arrogant. I’m frustrated, but I’m not arrogant. I’m sad, but I’m not arrogant.” I told him what my father had told me: humility is about accepting that we are one person among six billion others in the world and that we should not expect special treatment from anyone or believe that the world owes us anything. He told me that to be humble was to be thankful. I believed that humility and the state of my physical body were disconnected. At that point in my life, my anger with regards to my physical impairment was what motivated me to work to be better. I was aware that it wasn’t the healthiest mindset to have, but if I got mad about having spastic diplegia and knew I could change it with work, then I would work to achieve change. I had a choice and kept making the choice to change. I still make that choice every day and will do so for the rest of my life.