What It Feels Like to Live with Cerebral Palsy

I have cerebral palsy, but it does not have me. 

Sounds nice, doesn’t it? Did it make you feel good to read that? Here’s the thing. It isn’t true. Cerebral palsy absolutely has me. I cannot turn it off or take a vacation from it.  

In my Growing Up with Cerebral Palsy post, I wrote, “Cerebral palsy just affected the way I moved about in my environment. Cerebral palsy was simply my normal.” But there really is no “just” about having a lifelong disability, is there? Cerebral palsy does not affect my movement in isolation, but has shaped who I am in a way that is inseparable from my DNA.

I am going to attempt to describe what it’s like to live with cerebral palsy. But it is like asking an able-bodied person to describe what it’s like to live without cerebral palsy, you see. We really know only our own experience. We can try to articulate it in relationship to another, but how do we know if we are accurate?

This should go without saying, but I will say it again, nonetheless. Every person experiences CP differently, with some commonalities. My CP is mild. I am always aware of that and grateful for my overall independence.

So here we go. I would characterize my life as one of uncertainty. My ability to balance consistently is tenuous at best. I cannot trust my body to hold me up. 

Imagine that you are walking down the sidewalk, and then you are suddenly sprawled on your hands and knees and they are stinging and you know there will be blood and you’re unsure if you will be able to get up by yourself. Imagine that you are standing in your kitchen, holding a cup. Suddenly, equilibrium in your body shifts, all your muscles tense and you flush with heat, your hands fly out, liquid sloshes, balance has flown, and you clutch the edge of the counter in time to keep from going down. Or, the counter is just out of reach and you’re wondering as you fall if you’ll knock your head against the cabinets, mentally bracing for the impact of your backside against the hard floor. The world is not a safe place, you see. Your body is not a safe place. Are you beginning to understand how this affects who you are–influences how you interact with space and things and people? 

Sticking to the edges, where there are fewer people to bump me, a hand always on furniture or the wall, a hand always needed as insurance instead of free to greet, or carry, or hug. Always calculating the risks involved in an action, always cautious. Will my body succeed at that or not? Do I try it? Or not? Split-second decisions all the time. Will that person move away from the railing so I can use it? Or stand from that bus seat before the bus starts moving, so I can maneuver into the seat in time? Do I have to speak up and ask?   

There is no striding confidently into the room. No standing for hours at a party, holding a plate of food or a full glass, and chatting comfortably. No stepping off a curb or over a puddle or a backpack in the aisle. No running to catch up with friends or stopping and turning with ease if someone calls my name. No giving or receiving hugs freely. 

It is not only the constant challenge of staying upright–but upright AND functional. I do not have the strength or balance to stop moving when I need to. My body will keep moving haphazardly forward with my momentum even when I need to stop. Small, uncontrolled steps to keep up with the momentum, or a hand out to stop and steady. If hands are full, then it’s the backs of the hands, the forearms, or the forehead that halt the forward motion. The forehead is not a good brake. Example: emptying the dishwasher. I’m carrying a stack of plates to the cupboard using both hands, and I don’t stop well when I arrive at the open cupboard. Elbows and wrists pitch outward toward sharp cupboard edges in an effort to save my head from using the front edge of the cabinet to stop my body crashing into the stacks of glass dishes inside. Hence, moving through life with one hand functional and one hand occupied by steadying. And only carrying two or three plates at a time.

Let’s acknowledge for a moment bodily needs like toileting and showering and menstruating and intimacy. Cerebral palsy might directly affect these things, or directly affect my ability to address or participate in them. Does CP affect my ability to retain or release urine? I do not know. I do not know if me holding my pee feels the same as you holding your pee. I can tell you that really needing to go makes getting pants down and getting seated properly, without falling on my face, a hundred times harder than when I’m not in a rush.

Emptying the dishwasher, removing a heavy pan of hot food from the oven, scrubbing the toilet. Putting on clothes and taking them off. How will my body handle this today? Will I be able to lift the hot casserole dish with one hand while using the other hand to stop my whole body from tipping forward into the oven? Will I be able to step into my underwear on the first try, or get my foot tangled the first three tries, whole body tipping forward again, leg muscles straining, one hand holding the dresser as I try to hold the leg hole open with the other, to create a wide target for my uncontrolled foot.

The constant navigation and calculation is exhausting, both physically and mentally. I perform every private action and every public interaction with some degree of uncertainty. I literally do not have physical confidence. How can that not affect who I’ve become as a person? 

I’m not trying to say that there are no confident people with physical disabilities. Of course there are. Of course there are extroverted people with cerebral palsy who may indeed walk confidently into a room. I was born a cautious introvert. And I theorize that living with cerebral palsy has intensified my caution and my introversion. 

Cerebral palsy has also made me more observant and detail-oriented. I’m probably more aware than an able-bodied person that there’s lots we can’t see about someone. I readily accept that everyone and every situation has complexities. I think I have more compassion and curiosity than I would have had without CP, and more appreciation. Of course, I’d like to believe that I would have been a kind, observant, compassionate person even without cerebral palsy, and that having CP again only intensified what was already there. 

The world is complicated and being human is complicated. And we can only ever fully know our own experience. I hope this helps you understand a small bit of mine.