Living with cerebral palsy means that my body can leave me feeling uncertain. When I wake up, I often do not know how my spasticity, fatigue, and pain will make me feel.
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 can’t stand firecrackers, fire alarms, and horror movies because of this. Holidays like Independence Day are especially challenging, because I feel like I am on high alert all of the time. Sometimes, people set off firecrackers beforehand as well.
Living with a retained Moro reflex affects more than just my nerves. It impacts my balance, my ability to stay calm in public, and even my confidence. Imagine trying to sit through a quiet lecture or a dinner with friends, only to suddenly jolt upright when someone coughs too loudly. It’s embarrassing and sometimes isolating because people don’t always understand that I can’t control it.
Over time, I’ve learned some coping strategies. I avoid places where loud, unexpected noises happen. I prepare myself mentally when I know alarms or fireworks might occur. I also try to explain to those close to me what’s going on, so they don’t misinterpret my reaction as fear or anxiety.
But the challenges don’t stop there. 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.
External factors also affect me. Weather influences my spasticity. It often feels like my body has its own barometer. On cold mornings, the stiffness kicks in before I even step outside. My legs feel heavier, my muscles tighter, and simple movements turn into a struggle with my body. It’s not just uncomfortable; the cold seems to lock everything in place, slowing me down and making movement more difficult.
Summer isn’t always easy either. The heat can leave me feeling worn out, and fatigue worsens my spasticity. However, at least warmth relaxes my muscles, making stretching feel more effective.
The amount of spasticity I am experiencing can also change throughout the day. Factors such as the weather, my mood, and fatigue all affect my spasticity. If I am excited, upset, or fatigued, I usually experience more spasticity.
But what people don’t see is how exhausting it all is. Living in a body that startles, tightens, jerks, and fights itself isn’t just inconvenient; it wears you down. It chips away at your patience, your dignity, and your sense of control. Some days, the constant tension and unpredictability make me feel trapped in a body that isn’t fully mine.
My body startles, stiffens, resists—and I persevere. Each day requires patience and strength. I am more than the reflexes that betray me, more than the spasticity that binds me.
Although I struggle, I try to focus on what matters: resilience in small wins, dignity in perseverance, and happiness in little moments. Even in a body that feels uncertain, I remain, whole, present, and unbroken.