Cerebral palsy is a physical disability that affects my ability to walk. I use a walker and a power wheelchair for mobility. Cerebral palsy presents many other challenges that others might not see.
For me, one of the most difficult parts of having cerebral palsy is the lack of control over my body. One of the most obvious examples of this is something called the Moro reflex. This is a reflex that all babies are born with. However, for me and many others with CP, this reflex never went away.
Any sudden noises can make me jump and my heart race. I cannot stand firecrackers, fire alarms, and horror movies because of this.
I also experience something called scissoring. Scissoring happens when my legs involuntarily cross over each other, almost like the blades of scissors. This occurs due to tightness in the muscles of my inner thighs, making everyday tasks harder than they should be. In the shower, this motion makes it tough to get cleaned up. Sometimes, someone has to hold my legs apart so I can wash properly.
I also struggle with visual issues because of cerebral palsy. I am nearsighted and must wear glasses to see at a distance. However, my glasses don’t help much with my visual perception difficulties. My brain interprets some things differently from most people.
Due to my visual perceptual issues, I tend to get lost easily. This makes shopping a challenge. I focus on a specific aisle each time rather than thinking ahead. I have trouble staying on one side of the aisle.
Another challenge I face is depth perception. I often misjudge how far away something is or how big it might be. A simple step can feel like a cliff, while a curb can look flat. This makes navigating new environments exhausting because my brain is always trying to fill in the gaps.
In a crowded place, everything blends together, and it becomes hard to tell where people are moving. I have to pause, breathe, and take my time so I don’t bump into someone or completely lose my sense of direction. These unseen challenges can be just as frustrating as the physical ones that people notice.
When someone sees my walker or wheelchair, they usually understand that I move differently. But they don’t always realize that my brain processes the world differently too. They don’t see the mental effort it takes to stay oriented in a store. They don’t see how my muscles fight against me when I’m just trying to stand still or how a sudden noise can send a shock through my whole body.
Despite all this, I’ve learned to adapt. I’ve learned to ask for help when I need it, even when it feels vulnerable. And I’ve learned that sharing these experiences matters. People can’t understand what they’ve never been told.
Cerebral palsy shapes my life in both visible and invisible ways. Some days are harder than others, but every challenge has taught me something about resilience, creativity, and patience. I’m still figuring things out, still growing, and still learning how to navigate a world that wasn’t built with my body in mind. But I’m here, moving forward, sometimes slowly, sometimes with help, but always with determination.
Sources:
Black, P. ‘Visual Disorders Associated with Cerebral Palsy’. The British Journal of Ophthalmology, vol. 66, no. 1, Jan. 1982, pp. 46–52, https://doi.org/10.1136/bjo.66.1.46.
Hafström, Maria, et al. “Cerebral Palsy in Extremely Preterm Infants.” American Academy of Pediatrics, American Academy of Pediatrics, 1 Jan. 2018, pediatrics.aappublications.org/content/141/1/e20171433.
Stokey, Phillip, et al. ‘Moro Reflex: A Mini Review of Literature’. Journal of Clinical Surgery and Research, vol. 3, Jan. 2022, pp. 01–02, https://doi.org/10.31579/2768-2757/035.
Scissoring Gait and Cerebral Palsy: Causes, Risks, & Treatment.” Edited by Barbara Brewer, Flint Rehab, Flint Rehab, 26 July 2021, https://www.flintrehab.com/scissoring-gait-cerebral-palsy/.