Silent Battles — A Letter to Those With Cerebral Palsy

When I was a kid, I refused to talk about my cerebral palsy. I was confused and angry. I didn’t want to deal with the multiple braces and casts I had to wear, or the countless hours of physical therapy, or the surgery — and recovery — I endured. All I wanted was to be a kid with no physical impairment.

I often felt like I was the only person on earth struggling with this thing my doctors called cerebral palsy. Even though I had the support of friends and family, I still felt alone. How could anyone else truly understand?

I lived in silence about my struggles. I was afraid of rejection. Afraid of being teased because of my limp.

My fear of being rejected by others was so deep that, ironically, it led me to publicly reject my cerebral palsy as a part of who I am. When asked by my peers why I sometimes had a limp, I would lie and say it was a sports injury.

Inside, though, my cerebral palsy was only a source of sadness, anger, and fear. My internal story surrounding my cerebral palsy was, “I am broken,” and over time, this became a part of my unspoken identity, which caused a lot of emotional pain — pain I battled for most of my life.

By the time I was 25, this story had taken a toll on me. I was tired of feeling broken. I knew it was limiting my true potential, so I made the choice to change it. It was time to accept the truth: that I had cerebral palsy, but it doesn’t make me a bad person. Having cerebral palsy didn’t mean I was broken. I made the choice to let go of my old story and change the narrative to “My cerebral palsy is a great source of strength.” When I changed the story I had created around my cerebral palsy, I turned it from a perceived weakness into a strength that I could draw from to push my limits and help others push theirs.

At that time in my life, I was also discovering my passion for hiking and climbing. One day while rock climbing, I had a eureka moment on how to combine my passion for hiking and newfound desire to help others with cerebral palsy. That day, I asked three of my friends if they wanted to climb Mount Kilimanjaro, the tallest mountain in Africa, and raise money for a Boston non-profit that specializes in helping those with cerebral palsy and similar disabilities.

Fast forward a year, and I became the third person with cerebral palsy to summit Kilimanjaro unassisted, and we raised over $14,000 for a local non-profit. Powerful things can happen when you change your story.

During my experience with Climb for Cerebral Palsy, I heard stories of struggle and pain, but also of strength and triumph. After connecting with so many other folks with cerebral palsy, I now know that I was never alone. There are over 17 million people in the world living with cerebral palsy, and they do understand.

To those living with cerebral palsy who are struggling with carrying around shame, anger, or fear: You don’t have to struggle in silence. You can change your story. Inside of you lives a great well of strength. No matter what anyone says, you are equal, strong, and enough — just the way you are.

Peace and love,

Phil

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Disability Advocate & Adventurer. Cofounder of Expedition Empower. In Dec. 2021, I will attempt to become first person with cerebral palsy to summit Aconcagua.

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Phillip Berenz

Phillip Berenz

Disability Advocate & Adventurer. Cofounder of Expedition Empower. In Dec. 2021, I will attempt to become first person with cerebral palsy to summit Aconcagua.

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