KEEPING IT REAL: Alexa’s Story

KEEPING IT REAL: Alexa's Story

By Alexa Orban*

I was wearing the light-up sneakers my mom bought for me right before the new school year. I loved the way that they lit up with every step. I didn’t know that these sneakers would forever leave a memory as I walked onto the bus for the first day of first grade. That day was the first time I knew I was different. 

When I got home from school, I told my mom that I no longer wanted the shoes, and that they were for babies. The real reason I wanted to get rid of them was a group of classmates asking me why I walked so differently than everyone else. They laughed at me and pretended to walk with a limp like I did. Until that day, I didn’t even really understand that I was different. I heard the doctors say I had a tightened Achilles tendon, but it wasn’t until years later that I truly understood my diagnosis of cerebral palsy. 

My CP mainly affects my right side; it’s mild, but I have limited foot movement, can’t wiggle my toes, and my leg is noticeably weaker. My parents knew something was wrong when I wasn’t walking as a toddler. They did their best with the doctors that were locally in Connecticut, sending me to a specialist at CT Children’s hospital. A cast, a brace, and a few surgeries later, I had better mobility and less pain.

Now, at 27 years old, I understand what it’s like to be an adult with CP. Unfortunately, it’s taken me this long to truly take on my disability and navigate the ever-changing healthcare diagnosis that I’ve been given throughout my life.

Just because my cerebral palsy is mild, it doesn’t mean there aren’t obstacles that I’ve had to overcome my entire life. It’s amazing to see how much my body can accomplish when I put my mind to it, but I also know my limitations. Growing up, I was able to dance, play tennis, horseback ride, and I was even on my high school’s diving team . I wasn’t able to do what everyone else did, but I was out there doing my personal best. 

This past year, I started to share my story of cerebral palsy because I felt the need to advocate for people living with a milder case of CP. Little did I know I’d be able to create a community and support system for myself of women who had grown up in similar circumstances, without the proper support. I’ve had people tell me they have felt alone, nervous about the future, and embarrassed to talk about their CP to many people. For such a long time, I felt the same way. I never thought my journey would lead me to where I am, and now that I’ve empowered myself and others to learn more, I feel more confident about my life with CP. 

Sometimes it’s hard to live with a disability that for the most part is unseen. I still have hurdles to overcome, daily chronic pain, and the fear of what life will look like in 40 years. For people who are living with a similar case to mine or for parents with children who have mild CP, my advice is to keep moving. Go to the gym, take fitness classes, find a good PT that can keep you strong, and talk about your cerebral palsy even if it’s hard. When you carry the burden of your CP alone it makes your disability seem heavier than it is.

Because of my CP, I know I am a stronger person. From a young age I’ve had to overcome a lot of obstacles and try things in many different ways. My tenacity has always kept me going, even when I tell myself I want to give up. I’m blessed to have the two feet that I walk on, even if they may be different from yours. 

Stay up to date with my CP journey and connect with me on Instagram (@lexi_orban). 

*Alexa's story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.