Bilateral retinoblastoma treatment: what happens afterwards?

Bilateral retinoblastoma treatment: what happens afterward?

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Graphic abstract illustration of a large single eye. Image for an article on what happens after bilateral retinoblastoma treatment.
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Bilateral retinoblastoma treatment: what happens afterward?

Three eyes: my life after bilateral retinoblastoma treatment

Movies make me nervous. Aside from the question of their cinematic quality – and aside from my general nervousness – there is always the possibility that text may flash across the screen without warning. Text which takes the form of a scrawled note or a biographical byte or – God forbid – a rapid-fire iPhone exchange outfitted with ellipses; text which appears in looped script or at a great distance; text which, with the exception of the iconic Star Wars crawl, I doubt my ability to read in the time allotted. I have taken to absorbing as many movies as possible through Netflix or other on-demand media, arming myself with the power to pause and play according to my visual capacities.

By any account, those capacities are limited. At three months old, I was diagnosed with bilateral retinoblastoma, a rare genetic mutation whose tumescent growth obscures the retinas. The ill-treated patient courts blindness; the untreated patient courts death.

Two-and-a-half-years of bilateral retinoblastoma treatment: a string of chemotherapy and radiation procedures cured my right eye, but my left had to be surgically replaced with a glassy prosthetic piece, which itself has been replaced periodically as the eye socket grows and changes with me. I go to an ocularist in New Haven, a specialist in these polished proxies, and I marvel at his conscientious painting, his effort to match the tricky hazel of the living eye.

After my bilateral retinoblastoma treatment the condition is gone. It has been since the surgery, but it leaves me in a strange limbo. I can see 20-35, but my peripheral vision is less than half what it should be. I can run for miles and dance ballet, but I descend stairs slowly, one at a time in the dark if I do not know the staircase well, or often even if I do. I can drive well enough, but not sufficiently to pass the parking portion of the road test and acquire a license.

The lenses I have worn since age six are protective as much as they are corrective. And this is not even to speak of the garish goggles which were a fixture of my primary-school P.E. experience. From afar I am perceived as “normal;” up close there is enough fine print to pepper daily life with almost undetectable complications. The idea of the invisible disability never rang so true.


 

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My personality has been shaped, too. An infancy spent staring down the barrel of Nature’s gun gave way to youth–and an adulthood–spent seeking legitimate reasons to be seen. As early as age five, already sensing the need for a defense mechanism, I took up activities–reading, singing, declaiming, performing–which demanded attention for doing something rather than existing abnormally.

To this day, I will address a crowded room without hesitation and still struggle against the reflex of throwing a shielding hand up at the slightest threat. Sitting front and center in every classroom was already a necessity, so I cultivated it into a manifestation of intellectual fearlessness and a thespian hunger to be looked at. Because they were looking anyway. Something in my face makes people look twice, even if they usually do not know why.


 

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I pay an annual visit to the team at Sloan-Kettering for post=bilateral retinoblastoma treatment, the doctors who know things about me that I will never know about myself. What is invisible or indescribable to anyone else is visible and describable to these people, here. Quantifiable, even. They show me images of the scar tissue, of the one-hundredth of a centimeter of space that saved my right eye. They tell me they had expected me to lack the depth perception to pour a glass of water. They call me a miracle. As if I am the one who has done something miraculous.

If the eyes are the windows to the soul, then the retinas are the windows to the eyes. But I prefer to think of them as cameras. I am a single-camera documentary. Shaky, like The Office. Lopsided, despite the pair of frames to give an appearance of symmetry. My own movie stresses me out beyond belief. But what are you gonna do, I ask myself, press pause?

Sometime during my socially maladjusted childhood, I was the target of the antiquated insult “four eyes.” In retrospect, it would have been more accurate to call me “three eyes.” If they wanted to hurt me, they could at least have done it right.

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Article by
Cecilia Gigliotti

Cecilia Gigliotti is a writer, musician, and travel photographer. Much of her work deals with pop culture, childhood trauma, and things famous people have said when they thought no one was listening.

Caption:

If the eyes are the windows to the soul, then the retinas are the windows to the eyes. But I prefer to think of them as cameras. I am a single-camera documentary. Shaky, like The Office. Lopsided, despite the pair of frames to give an appearance of symmetry.

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