The Forgotten Geniuses of Society

The year was 2003. August 30th, to be precise.

The time was roughly approaching 6:00 in the morning. After facing three excruciating hours of active labor, the exhausted mother (Hi, Mom!) had just been informed that it was too late to administer an epidural. She had to start pushing. Right now. Sans the numbing drugs.

At 5:56 in the morning, the beautiful (Thank you!) baby girl came bounding into the universe, as if she had an important business meeting to get to. All ten fingers, all ten toes. Seemingly healthy. Seemingly perfect. Weighing in at nine pounds, seven ounces, mostly due to her freakishly long legs (Those didn’t do too much for me in the long run). Maybe she’ll be a dancer, her parents thought...

Spoiler alert: I was definitely not a dancer. Not even close.

Perhaps you could call me a dancer with words. Learning how to configure each line of dialogue like how to configure choreography movements in a dance routine. Yeah, that’s the same exact thing.

Growing up is overrated. Adulting is a chore. People dread it. No one wishes to tackle it.

Unfortunately, there comes a time, typically between the ages of 18 and 25 (depending on how harsh one’s parents are), when everyone has to endure the struggle at one point or another, or so I’ve been told. I heard that same spiel so many times over the years that I made it my life’s mission to enjoy the impending doom my future would bring. I thought it

couldn’t possibly be that bad...

Spoiler alert: it was pretty bad.

Well, not necessarily bad, just a little unusual. A little bit clunky. Odd. Weird. (Barely) damaging.

To this day, I’m still attempting to pinpoint the location of the correct word to describe my glamorous situation. I think I’ll still be searching for an answer for a while. Possibly forever.

Independence. (What’s that? I’m unfamiliar with this term...) As someone with very little control over their own physical state, I see just how crucial it is to one’s mental health to be comfortable enough to ask someone for assistance. Regardless of the need. Or the want, even.

Children are clever little souls. Their brains are as underdeveloped as a half-baked container of dark brown goo called brownie batter. Everything is simple. Easy. The impossible suddenly becomes possible. The illogical quickly morphs into being logical. Limitations don’t exist, and if they do, they require very little effort to move past the bumps in the road. The older you get, the harder it gets. But shouldn’t it be the opposite? Children are somewhat built like robots. They’re heartless to a fault. Resilient to no end. Most importantly, if they need help, whether it’s with playing with Barbie dolls or solving world hunger (I’m telling you, they’re smart), they will ask. It’s as simple as that.

When I was in preschool, my teacher informed my parents one day that she noticed I was having difficulty with walking and balancing. I was far too young to be a part of that conversation at the time, but if I had, I probably would’ve assumed that Mrs. Faucher was just jealous of my constant (and not-so graceful) falling during playtime. See? Simple.

Friedreich’s Ataxia.

Sounds like an exotic name for a weird-ass fried milkshake concoction stuffed with an excessive amount of rainbow sprinkles and gummy worms. That would entice every five-year-old who read the menu at The Sugar Factory to beg their parents to allow them to order it because it was their birthday twenty-six days ago, only to be utterly devastated when it comes out both looking and tasting like frozen vomit topped with whipped cream.

In reality, it’s quite the opposite. The name makes it appear that it’s a lot more complicated than it actually is until you figure out it’s just a simple misfortune. Friedreich’s Ataxia is a rare hereditary disease, a neuromuscular condition where the peripheral nerves (think brain to body) slowly over time. It may also lead to additional chronic illnesses such as cardiovascular disease, scoliosis, and diabetes. Translation: Your body will begin to slowly frustrate you to no end, until it is functionally nothing but a loose and unconditioned pile of skin and bones. See? Simple.

When I was diagnosed at the age of 5, nothing changed. Yet everything did. I was too young for my tiny little mind to fully grasp what to expect from my new normal. For the longest time, naive little me thought I was simply just poorly trained at the skill of walking. Well, I wasn’t that far off. The eight-year-old version of myself would attempt to practice the “craft” by traipsing up and down the upstairs’ hallway in my family’s home. Spoiler alert: I wasn’t very good at it. Everything was wobbly. Just slightly off-balance. This barely even fazed me. I had other skills, I thought. I didn’t need to be great— or good even—at walking. I had other talents.

I miss that. Being a kid. Feeling invincible. Feeling like nothing has the power to stop you or slow you down.

Fifteen years post-diagnosis, and things are so much more complex now. I need a new body. I want a new body. This one is not doing a passable job anymore. Realistically, it hardly ever was. My balance: completely shot. My legs: hardly cooperative. My hands & fingers: mediocre at best. My heart: somewhat damaged, yet stable for now. My spine and

back: amazingly straight for the last seven years, but still forever aching. The most unfortunate thing is that my mind is completely and happily functioning, typically working faster than my physical self. Due to this, my soul: bitter and uninterested. See? Not so simple.

As human beings, we’re stuck in this vicious cycle of anticipating (stressing over) the next chapter of our lives, which is, frankly, just utterly pointless. Everyone obsesses about their future. It’s part of human nature to do so, but it’s not a wise decision. Kids don’t do that. They think of a solution (probably not a very well-thought-out one) to a problem on the spot.

They solve it quickly. And then simply move on with their day. With their lives. It’s almost as if kids are smarter than adults most of the time. But why do adults receive more respect than children? Their IQ may be higher, but their instincts are definitely not.

Futures cannot be predicted. My future (?) is a picture perfect example of why that is the case. A huge chunk of adulthood is completely wasted on creating goals that may or may not be achieved in said future. Kids know what’s up. They live in the moment. They are in the moment.

Happiness. Love. Acceptance. Forgiveness. Those are the four most important ingredients when it comes to baking the pie that is life. Want to take a stab at when I learned that valuable piece of information? In kindergarten.

Cecelia Egan

Bristol RI, USA

Cecelia Egan is from Bristol, Rhode Island. She is a senior majoring in creative-writing. Her passion for writing originally sparked from her longtime love of film and theater.