I tried to hide my hemiparesis

It’s July Disability Pride Month.

As he told you Jacquelyne Froeber

I was born in pants — feet first — on December 3, 1993.

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

I don’t remember when the health care providers tried to turn me during labor or when things escalated and I had a forceps birth.

I don’t remember how scared my parents were when they found out I had a stroke at birth that affected the right side of my brain and caused a lack of oxygen during labor that affected the left side of my body.

I don’t remember being diagnosed with a type of cerebral palsy called hemiparesis or hearing that I may not be able to walk or use the left side of my body.

All I remember is love.

Growing up, my family did everything they could to normalize the fact that my entire left side—mostly my arm and hand—didn’t work like my right. It wasn’t until I was 5 or 6 that I realized there were activities like monkey bars that I probably couldn’t do. The realization didn’t upset me. I just knew I would have to find my own way of doing certain things.

Rachel at age 1, 1994

I went to occupational therapy and physical therapy for years, which played a huge role in my life and helped me maintain the function I had for many years. But as I got older, the tightness in my left arm gradually increased despite treatment.

Although I had a strong support network, the fear of being a burden was always in the back of my mind, especially after moving away from home. I was constantly worried that my friends would think I was needy if I asked for help with “simple” tasks like putting my hair in a ponytail or opening a jar of gravy. All the negative talk was in my head, but I convinced myself that asking for help was a sign of weakness.

I did my best to avoid situations or conversations where I had to explain my left hand. I lived in a state of self-deprecation, always trying to keep things light and avoid the “I had a stroke at birth” awkwardness.

The appointment was particularly difficult. Dating in New York is hard no matter who you are, but it was really hard for me to put myself out there, partly because my cerebral palsy is an invisible disability — you wouldn’t necessarily know about my limitations until I had to do something with both hands. I purposely avoided dinner on first dates because I didn’t want to draw attention to eating with one hand or have to explain my arm.

Rachel in Bend, Oregon, 2025

When the pandemic hit, I felt more alone than ever. Like many people, I turned to social media to connect with friends and family. One night, I had a random thought: Are there online groups for people like me with hemiparesis?

I was typing the word into the search bar and my whole world changed.

The thought of an online support community had never occurred to me before that moment. I had never met anyone else with hemiparesis—I just assumed my condition was rare. But there were support groups and one 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 was free to talk about my struggles. Free to talk about the chronic pain I was experiencing from tight tendons in my left arm. Free to adapt to a world not made for people with disabilities. The more I learned from other people in the group, the more I wanted to share my experiences to help others.

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

Through social media, I have built an incredibly important community of people who have hemiparesis and parents of children with hemiparesis or cerebral palsy. Being able to connect with the parents came full circle for me. I didn’t know anyone with hemiparesis growing up and being told that I was a role model for children with disabilities meant everything to me.

After a few years of posting, I started to focus more intentionally on sharing my life story and how I had a stroke at birth. The response I received online was overwhelming. Within months, I had millions of views and hundreds of people reached out to me to thank me for spreading awareness about pediatric stroke and hemiparesis.

Rachel and her friend, 2025

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

I hope that everyone who lives with limitations—invisible or not—has a voice and an opportunity to live a full and fulfilling life. It took me a while to find my voice, but now that I have, I want to be a part of the change.

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