CW: Pain
During my physical therapy appointment on Wednesday morning, my physical therapist and I were engaging in normal conversation. We talked about the Olympics and Spring Training. It was the kind of light conversation that made the session easier.
As the session continued, he noticed that I was unusually spastic. I wasn’t surprised, especially because of the cold weather. He could tell that I was becoming frustrated, trying not to grimace from the pain.
He let me take a few minutes to rest. Then he surprised me with a question: “What would you change about your diagnosis?” I had an answer right away. I said I would get rid of the Moro reflex, the involuntary movements like scissoring, and the extensor tone that makes my back arch. This happens especially when I’m transferring or lying down in bed.
Living with cerebral palsy means my body reacts in ways I can’t always predict or control. My Moro reflex often kicks in during these appointments, which frustrates me more than I like to admit. When it happens, it takes about a minute for my nervous system to calm down again. That minute feels long when I’m trying to stay focused and present. It’s like my body hits a panic button I never pressed.
The scissoring in my legs isn’t new. Sudden sounds or quick movements can set everything off. But even knowing that doesn’t make it any less frustrating when it happens in the middle of something ordinary.
Yesterday, I was talking—nothing stressful, nothing surprising—and my legs tightened and crossed on their own. It’s a familiar pattern. However, it still leaves me feeling exposed every time. The unpredictability of it all is draining.
I never know when it’s going to happen. That constant uncertainty wears on me more than people realize. The exhaustion comes from both the physical effort and the mental vigilance of not knowing when my body will react next.
Scissoring affects me most at night. My legs tighten and cross without warning, pulling me out of sleep repeatedly. I rarely sleep through the night because of it. Even when I’m exhausted, my body doesn’t always let me rest. It’s hard to explain how draining it is to wake up over and over again because my muscles won’t stay calm.
A lot of these tie back to the Moro reflex, the startle reflex babies are born with. Most people grow out of it, but in people with cerebral palsy, it can linger or show up in exaggerated ways. For me, it doesn’t take much to trigger it. A noise, a shift in the room, even the sound of my own voice can set it off. Once it fires, my muscles respond with tightness, scissoring, and sometimes that strong extensor tone that pulls my back into an arch. It’s strange to feel your body reacting to things you didn’t even notice as startling.
So, when my PT asked what I would change about my diagnosis, this is what came to mind—not the label itself, but how my body sometimes feels like it’s acting on its own. I know these reactions are part of my CP, not something I’m doing wrong, but they still make everyday moments unpredictable. I want to sit, talk, transfer, lie down, or even sleep without worrying that my legs might clamp together, or my back might arch unexpectedly.
At the same time, I’m trying to recognize how much I manage every day. I’ve learned to navigate a body that doesn’t always cooperate. That takes strength people don’t always see.
Talking about it—writing about it—helps reduce the shame of something that isn’t my fault. This is part of my life, and some days it’s tougher than others, but naming it feels like a step toward making peace with a body that startles before I even know why.