Reluctant reliability: a glimpse into cerebral palsy

Erin Kelly, a writer with cerebral palsy, reflects on the mental aspects of an ordinary morning.

I woke to the sight of a dull-orange sun bleeding through my bedroom window. I stirred under my covers for a moment before I noticed an eerie quietness upstairs.

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by Erin Kelly, Notey November 27, 2017

I waited for some all-too-familiar sounds: the soles of shoes making their way down the wooden stairs, the jingling of car keys, a hand on the doorknob of my handicap-accessible entrance.

Silence.

Must’ve slept through the parade of early morning footsteps. My dad had already left for work, my younger brother for school. There was no click-clank of dishes upstairs in the kitchen, either, so I assumed my mom was running her usual morning errands.

“I needed that phone in order to do something that most consider simple and second nature.”

I turned my head to find my wheelchair parked in the same spot as it was the night before. It’s always parked close to the wall so that the cord from the charger reaches the outlet. The low hum of its motor died down during the night.

The only sound that echoed came from my dog who was snoring away under my bed, and of the roar of cars zipping by on the highway. Just as I was wiping sleep from my eyes, Mother Nature called.

I instinctively reached for my phone, expecting it to be in its usual spot beside my pillow. Nope. I squirmed to the edge of my bed, just enough to peek over the guardrail, to find the phone on the floor.

I didn’t know how it got there and I didn’t care. I needed that phone in order to do something that most consider simple and second nature. I reminded myself nothing is a “simple” case of mind over matter when a disability is involved.

My cerebral palsy has forced me to rely on my family so much, to the point where I can tell who’s coming and going by the sound and rhythm of their footsteps. I’ve also come to rely on the placement and timing of certain things, as well as the sounds that accompany them. When all of those things seemed nonexistent on this particular morning, my conscience became my only ally. I knew it was the one thing that wasn’t going to fail me, even though it was giving me a beat down. I had two choices at this point—yell as loud as I could to see if someone was actually in the house, or wait it out and hope for the best. My mind went wild trying to figure out ways to miraculously fish the phone through the guardrail.

I wanted nothing more than to jump out of my bed, grab my phone, and text someone as fast as my chubby little fingers would allow. As with so many other scenarios like this, my cerebral palsy didn’t present me with that option.

I didn’t mind having to lie in bed. That’s a kind of pressure and frustration I’ve grown accustomed to, but I had extra physical pressure to contend with. That completely changed the game.

Rolled to my right, then left, then to my back. I even rolled on my stomach, but no movement I made was quick or sharp enough to relieve the pressure on my bladder. It only seemed to intensify with each passing second.

“Everyone needs help sometimes, but there’s an entirely different level of reliability involved when you have a disability.”

As I started to scream as if my life depended on it—I realized I couldn’t do a single, solitary thing to help myself. I was physically and mentally exhausted at this point. I was furious that I let a simple situation get the best of me, but my only saving grace was the sound of my mom’s van pulling in the driveway with seconds to spare.

“Am I too late?” she asked over the rustling over grocery bags.

As I watched her walk into my room and pick up my phone in one smooth, quick motion—I knew this was one of countless incidents where I’ve had to surrender to someone else’s ways. Every time I give in I feel defeated in some way, and not having the luxury of refusing help when I know I need it is the real buzz killer.

By the same token, I have to maintain enough mental stability to not blame myself. When you fail to realize your back is against the wall, chaos ensues. Everyone needs help sometimes, but there’s an entirely different level of reliability involved when you have a disability. My mom has an innate ability to sense that, and the minute those words came out of her mouth I knew exactly what she was talking about.

When you strip everything away it’s the same sense of reliability that even the strongest individuals in the world have come to call upon. It somehow connects them to us—and us to them—in a way that makes the playing field level for everyone. It may not spell the end of war and violence, but an awareness of our own complex reliability is a darn good place to start.

Source Notey