A Journey With Cerebral Palsy

It’s late at 35 to still have trouble accepting my cerebral palsy. I’ve struggled with not only the physical aspect, but also the emotional aspect of having the disability. This week I will take another step forward in the acceptance journey. For the first time I’m playing in a golf tournament to help children and adults who battle CP. It will be my first time spending time around people who I can physically relate to. Throughout life I have seemed to steer myself away from people with cerebral palsy. Absent doing therapy as a child and gaining support while going to school I have seemingly tried to ignore its place in my life. The feeling I’ve had to hide CP in order to gain acceptance has probably caused many negative emotions. There is a lot of fear inside about participating this week and I don’t know how I will react around others whom I share the disability with. My hope is the event and subsequent interaction with the non-profit Provail will be a turning point in life.

There is fear going into the golf tournament for Provail. On a connection from someone close to me I gained awareness of the non-profit and a contact person. There was just one spot open to play when I called. It took a night of consideration before taking the opportunity. Even though the day will be centered on cerebral palsy I still feel anxiety. There is no way of knowing how the people in my group will react to my level of CP. Past experienced tells me I will be shaking like a leaf when we finally play our first hole. Pushing a tee in the ground and balancing the ball on top always makes me slightly uncomfortable. It will be more nerve-racking around people I don’t know who have never witnessed my unsteady hands. I know my thought throughout the morning will be occupied with the hope of easily getting the ball to balance on the tee.

Before I face the apprehension of getting to the first tee box I will hopefully interact with people of all ages with cerebral palsy. It will be my first time around people in wheelchairs. It’s uneasy to think about my reaction to the situation. I think about how to say hi and presume they would like to be treated like anyone else. It worries me to think about the situation making me uncomfortable. Anxiety often leads me to saying things and wishing I could take them back. I’m hoping the people with cerebral palsy that Provail supports accept me. I sure would like to get to know them. Having people in my life to share physical commonality with me could be life changing. My hope is I get to know some of them a little tomorrow without my self-consciousness and fear driving me away from interactions.

It’s embarrassing to say I’ve steered clear of people with cerebral palsy. Growing up I wasn’t exposed to an organization like Provail. It seems my parents didn’t think I would benefit from being around other kids with CP. I’m affected mildly and was often pushed to totally overcome the disability. I attempted all of life to accomplish the goal, but realize cerebral palsy is not going away. There is no grudge to be held against my parents for those decisions, as I trust they were doing the best they could. The challenge is in my hands to attempt gaining back some of the lost interactions with those who struggle in similar ways.

My life has always seemed to be lived in a gray area. Cerebral palsy makes things more difficult, but usually I can find a way to execute most anything. With the things I do struggle with mostly revolving around meals I’ve learned to ask for help. Other than these small tasks where help is beneficial, my life is independent. I live on my own, drive a car, play sports, and have had jobs throughout my life. Many signs would point to a life relative unaffected by cerebral palsy, yet the minimal physical difficulties and slightly slurred speech hold me back from an unaffected life. It’s a gray area between a full dependence on others resulting from a handicap and an unaffected physical life that challenges my days.

Even with fear around playing in the golf tournament this week I still feel excitement. It will be the first time in a while I’ve gone to an event without knowing anyone. My hope is it frees me up to interact without fear. The experience of spending time with others who have cerebral palsy causes me apprehension, but like the excitement of playing golf with people I don’t know, I feel excitement around meeting people who also have cerebral palsy. Things could go poorly, I could say something I don’t mean, shut down and struggle with interactions, or feel rejected. It’s all seems worth the risk to feel what it’s like to be surrounded by those who share similarities.