Write to the Point!

A Neighborhood Studios Program at the Mark Twain House

Without Challenges, Cecilia Gigliotti Wouldn’t Be Herself

By Rae Martin

Writing Apprentice

Twain Studios

When one hears of a girl suffering from a rare and debilitating disease, the first thought from an empathetic mind would be one of pity. People jump to the assumption that each and every day, she must either be in physical agony or some form of mental anguish, that she must curse fate and scorn all the gods for cursing her with genetic mutations or exposure to some deadly pathogen. Right?

Cecilia Gigliotti and balloons

Balloons enhanced Cecilia Gigliotti’s fun-loving spirit as a summer Writing Apprentice at The Mark Twain House & Museum.

Wrong. Most people don’t want to be defined by a condition they had no control over.

One extraordinary individual is Cecilia Marie Gigliotti. She is a victim of one such disease, one that many people would be at a loss to spell, or pronounce for that matter; Bilateral Retinoblastoma.

Symptoms of this condition typically appear within a few years of birth, and if not treated, it not only leads to blindness in both eyes, but increases the odds of the individual to develop a myriad of cancers. In short, while it doesn’t directly lead to death, it can still result in a slow, painful, and ultimately nasty death.

Gigliotti’s parents recognized by her first birthday that something wasn’t right with her. Her eyes didn’t follow people when they entered a room and she never took to reaching for objects of interest to a baby.

By age three, she underwent surgery that would save the vision in her right eye, unfortunately only her right eye. Her left had to be removed and is now a prosthetic.

People are commonly referred to as the sum of their memories and experiences. Her set of memories and experiences might equal bitterness and loathing, yet in this case it’s not so.

“If I could see like everyone else, then I wouldn’t be me,” she said. “My whole ordeal has given me an acute sense of how precious life is.”

Her words echoed in my mind a reoccurring narrative among the disabled. The one statement they constantly say in varying ways is that through their tribulations they gain an understanding of how valuable existence is.

It’s beyond disappointing that we can’t all know this without experiencing trauma of some form or another. A life lesson as valuable as that should be known inherently.

‘Lesson’ is not the best term to describe when this truth is acquired; virtue is more appropriate.

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