I tried to hide my hemiplegia

July is disability pride month.

As I said to Jacqueline Fröber

I was born feet first on December 3, 1993.

Of course, I don’t remember anything about that day.

I don’t remember a time when a health care provider tried to turn me around during labor, or when things escalated and I was delivered using forceps.

I can’t remember how scared my parents were when they found out that I had suffered a stroke at birth, affecting the right side of my brain and the left side of my body due to lack of oxygen during birth.

I don’t remember being diagnosed with a type of cerebral palsy called hemiplegia or being told that I couldn’t walk or use the left side of my body.

All I remember is love.

Growing up, my family did their best to normalize the fact that my entire left side, especially my arm and hand, didn’t work like my right side. It wasn’t until I was 5 or 6 that I realized there were some activities I couldn’t do, like monkey bars. That realization didn’t make me sad. I just knew I had to find my own way of doing things.

Rachel at age 1 in 1994

I have had occupational and physical therapy for many years, which has played a huge role in my life and helped me maintain the function I have had over the years. However, as he grew older, the pressure in his left hand gradually increased despite treatment.

Although I had a strong support network, there was always the fear in my head that it would become a burden, especially after I left home. I always worried that my friends would think I was needy if I asked for help with ‘simple’ things like tying my hair or opening a bottle of sauce. All the negative stories were in my head, but I convinced myself that asking for help was a sign of weakness.

I tried to avoid situations or conversations where I had to explain my left arm as much as possible. I’ve always lived in self-deprecating mode, trying to keep things light and avoid the awkwardness of “I had a stroke at birth.”

Dating was especially difficult. Dating in New York is difficult no matter who you are, but because my cerebral palsy is an invisible disability, putting myself out there was really difficult. I wouldn’t necessarily know my limits until I had to do something with both hands. I intentionally avoided dinner on first dates because I didn’t want to draw attention to eating with one hand or having to explain my arm.

Rachel in Bend, Oregon, 2025

When the pandemic hit, I felt more alone than ever. Like many people, I used social media to connect with friends and family. One night, this thought suddenly occurred to me. Are there any online groups for people with hemiplegia like me?

I typed the word into the search bar and my world changed forever.

Before that moment, the thought of an online support community had never crossed my mind. I had never met another person with hemiplegia. I just thought my condition was rare. But there was a support group, and that group had thousands of members from all over the world.

I immediately signed up and started talking to people in the community. For the first time in my life, I felt understood. I spoke freely about my struggles. Feel free to talk about the chronic pain you have been experiencing due to tight tendons in your left arm. Feel free to talk about adapting to a world not made for limited people. The more I learned from others in the group, the more I wanted to share my experiences to help others.

Even though I was riddled with self-doubt, I started posting videos about hemiplegia. I thought it was worth being vulnerable and pushing myself out of my comfort zone if I could help one person living with cerebral palsy.

Through social media, I have built a very meaningful community of people with hemiplegia and parents of children with hemiplegia or cerebral palsy. Being able to connect with my parents was perfect for me. Growing up, I didn’t know anyone who had hemiplegia, and hearing that I was a role model for children with limitations meant everything to me.

After posting for a few years, I started to focus more intentionally on sharing my life story and how I suffered a stroke at birth. The response we received online was overwhelming. Within a few months, we had millions of views and hundreds of people contacted us thanking us for spreading awareness about pediatric stroke and hemiplegia.

Rachel and her boyfriend, 2025

Each comment and conversation reinforced to me how powerful it is to feel understood and seen. When I stopped hiding and started sharing, my whole life changed. Most recently, I fell in love, moved to North Carolina to be closer to love, and started a new career focused on raising awareness of stroke and cerebral palsy.

My goal is for everyone living with limitations, visible and invisible, to have a voice and opportunity to live a full and satisfying life. It took me a while to find my voice, but now that I have, I want to be a part of the change.

Do you have a real woman, a real story of your own, that you’d like to share? please let us know.

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