Growing Pains: What Growing Up With Cerebral Palsy Taught Me About Life

Like so many others my age, at 14 I desperately wanted to be just like everyone else. But unlike most of my peers, I had spent 14 years trapped inside of a body that wouldn’t let me move. I was born with cerebral palsy and had dealt with mobility issues my entire life. These issues included spasticity in my legs due to improper neuron reception — an experience that led me to believe I would never live pain-free.

When the spasticity got even worse as I started to go through growth spurts, however, doctors told me I could have orthopedic surgeries to release the tension in my muscles. I chose to have them. I couldn’t be free while my muscles were in a constant state of contraction. I believed my condition squeezed me into this little box called "handicap." It wasn’t who I wanted to be.

I had never experienced vulnerability the way I did the day of my surgery. I had no idea what to expect from having my legs manipulated, my muscles cut into and twisted, all while my mind was off in a fake paradise of drug-induced sleep. I remember walking into the operating room. I thought of the thousands of people that must have been in there before me. I wondered what their stories were, what struggles they were attempting to cast away by going under the knife. I wondered if they were as desperate as me, as desperate to feel joy within their bodies.

I spent the summer before 9th grade with massive casts on my legs, a bar in between them. I continuously took narcotics and had to use bed pans. People had to wash me and I got sores and aches from lying down. It would be weeks before I would be able to bear even 20% of my weight, and when I finally could, I felt like a small child learning how to walk for the first time. As I took my first steps, my legs felt like they weighed 5000 pounds each. I had to remind myself to breathe. I felt like crashing to the floor and never getting up. The recovery was my battle: It took everything inside of me not to scream, “I can’t do this.”

I set impossibly high standards of recovery for myself and became discouraged when I failed to achieve them. I developed a hateful attitude and began to despise all of my mobility aids. It was easier to hate the things that reminded me of my disability than to hate myself, the container of that disability. The day this anger reached its apex, I sat in my wheelchair shaking, overcome with hate and frustration. I felt so disgusted with my inability to do what so many others took for granted.

Then I was reminded of an epiphany I had as I dozed off on the operating table. As a young teenager, I did not see how my mobility issues had made me stronger, how I actually endured more than I believed I could. I saw my disability as something that was trying to destroy my character, as something that constantly tried to pull me down and rip me apart. I didn't realize that my biggest challenge was actually my greatest blessing. Only those things that challenge us make us stronger.

Slowly, however, a quiet melancholy overtook my mind. I thought of other people, to illnesses beyond my own. I pondered immobilizing conditions such as mental illnesses and the toll they take. I realized that maybe I wasn’t alone and thought of all the people I knew (and didn't know) whose suffering may be less visible, but just as real. The courage and perseverance required for me to recover from my surgery suddenly seemed insignificant compared to such challenges.

In that moment I knew my biggest challenge would not be learning to walk again: It would be learning to accept my reality for what it was then living the best life I could. I started this process by breathing. I breathed in hope and blew out negativity. I meditated and did yoga. I sang terribly off-pitch in the shower — but I was so happy to be showering on my own again that I couldn’t help but sing in rejoice. I put my pen to paper each night before bed.

"Acceptance is a virtue," I wrote one evening in my journal. "It is patient and it will wait for you. The amount of time it takes to fully accept a life change and its challenge is different for everyone. What I find amazing is that we not only have the potential to survive transition, but also the ability to thrive because of it. New possibilities will surround us if we face our reality with courage and with the knowledge that acceptance of self is not a journey of exclusivity. It is a human journey."

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Rachael H
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