Looking for the light: Sanjana Kota’s battle with going blind by 40

As she leans back against the dark blue seams of a linen chair, her smile radiates a comforting sense of warmth throughout the room. Sanjana sits with a firm posture — a certain poise — that perfectly compliments her shimmery lips drawn into a wistful smile. Her hair bounces like waves of the ocean — softly reflecting the golden sunlight — each strand moving as if swayed by an ocean born breeze. She moves to adjust the golden earring dangling from her ear, neatly tucking her voluminous, black hair behind her ears. The room she sits in is a sanctuary — a place where Sanjana feels free to binge tv shows, munch on cookies, and ponder about the deeper meaning of life. Her eyes dart around the room, a sheepish grin approaching her face as she apologizes for the slight mess. I tell her I don’t mind the mess, taking careful note of her eyes as they hit the golden rays of sun peeking behind her half-drawn blinds. Her eyes were pools of gold, the color of autumnal leaves, the earthy tone of soil after a summer rain. And as they glistened under the haloing warmth of the November sun, I swear if you look just close enough you can see the depth: the pain, the uncertainty, the untold stories that were hidden behind those eyes. 

For sophomore Sanjana Kota, her eyes have always been a symbol of pain. From the moment in 7th grade that she was diagnosed with retinitis pigmentosa to the moment she was told that she would go blind by 40 years old, her unwavering strength and maturity have kept her afloat in times when the whole world seems to be pushing her down.

“It was March of 7th grade — 2017 I think —when I was diagnosed. Basically, [I have a condition] where the rods and cones in your eye aren’t functioning properly and your retina is also degrading. It’s extremely rare since only 100,000 to 200,000 people in the U.S. actually have it,” Sanjana explains.

A sullen expression briefly paints itself across her face but is quickly exchanged for a reaffirming smile. She is often seen with the same expression walking through the halls — a cheerful smile complemented by soft, gleaming eyes. 

“Strength is an extremely important part of who I am. After the initial diagnosis, the reality didn’t hit me until about a year later. I felt hopeless,” Sanjana explains. “I felt extremely lost in terms of how this diagnosis would shape my future and just how I would have to adapt to its symptoms. I actually became depressed and had anxiety through my freshman year which caused me to lose focus on my grades and not watch my diet. Today, regardless of how I feel and what I’ve been through, I try to always put on a smile.”

Sanjana has struggled with the onset of various vision problems since five years old. These symptoms — namely a loss of night vision and reduced peripheral vision — were key indicators to doctors that she was fighting such a rare, progressive disorder. Although not formally diagnosed until 2017, her vision problems were clear harbingers of what was to come — especially for her father, Suresh Kota. 

“I vividly remember the day that we went to our family doctor in India — when [Sanjana] was five — to discuss what was causing her vision problems,” Suresh wistfully recalls, his focus shifting between his furrowed brows as a shadowy expression casts itself upon his face. “I told Sanjana to stand outside [before the doctor revealed what the problem was] and they told me there was a high chance she would go blind. It was a very tough moment for me because I was unsure about her childhood and her future.” 

Suresh’s eyes begin to water as his words falter with every shaky breath. In this moment, it’s evident to me that pain leaves behind invisible scars — ones that can be opened even by words, ones that will be hard to heal. Sanjana’s diagnosis may harbor past feelings of pain, but it’s in the present where she truly combats against it. 

“I know it’s taken a toll on my family. That day 10 years ago I remember hearing about how I had dots in my eyes and that I would go blind, but I don’t think I was supposed to hear that actually since I was sent outside the room. After going home from the doctor, I vividly recall seeing my dad crying with my grandparents in the living room, and after my diagnosis in 2017 I was finally able to connect the dots together. My dad told me that he wanted me to have a normal childhood without the stress of worrying about the condition,” Sanjana adds.

Sanjana and her parents — Suresh and Hema Neelesetti — pose for a picture at a friend’s house before the Homecoming Dance. “My family is my source of strength,” Sanjana said. Photo courtesy of Sanjana Kota.

“It’s not easy. It’s not easy knowing that one day everything around you your parents, your friends, the life you’ve built will be gone. It’s not easy to wake up every morning hoping that today won’t be the last day you’ll see. It’s no easy being treated differently by your parents after every doctor’s appointment. [I’m] scared for the future. I won’t lie.”

— sophomore Sanjana Kota

Sanjana’s lips quiver and curve downward at the crease as she finishes her sentence in a hasty breath. There’s a rawness to her voice — like the pain is still an open wound. Behind her firm posture and meticulous outfit — a simple white shirt paired with black jeans and a denim overshirt — lies all the pain, trauma, and emotions that are nearly invisible to those looking in from the outside. Sanjana does a good job of masking her past – a story which is unbeknownst to most of her friends and classmates. 

“Not many people know that I have retinitis pigmentosa, especially because the condition hasn’t progressed very much as of right now. I still don’t have any night vision or peripheral vision, so there are still implications that I have to deal with today,” Sanjana adds. “I can never drive because my vision isn’t legally up to par, I have to remind my teachers not to turn off the lights in class, I have to carry a flashlight with me in case there’s a power outage. There’s a lot to deal with. I also have to go to therapy every week also to deal with the emotional trauma that comes with such a diagnosis.”

Sanjana shifts in her seat, a more melancholy expression painting itself across her defined brows and golden brown skin as she delves into the lifestyle changes she is forced to make. She explains how hard it is to give up things — like driving — that are essentially the epitome of coming of age. It definitely takes a toll on her mental health to not be able to relate to other kids her age or participate in the same activities as her friends. 

“It’s not easy. It’s not easy knowing that one day everything around you — your parents, your friends, the life you’ve built — will be gone. It’s not easy to wake up every morning hoping that today won’t be the last day you’ll see. It’s not easy being treated differently by your parents after every doctor’s appointment,” Sanjana explains. “[I’m] scared for the future…I won’t lie.”

As Sanjana sits here — her skin illuminated all shades of gold under the haloing sunlight, her hickory-stained eyes flecked with wonderous streaks of hazelnut and caramel — she adds that her family will always be there for her. Her mom, in particular, Hema Neelesetti, has and will always be a strong pillar of support.

“I believe Sanjana is a strong person, much stronger than me. She will always be able to do what she wants in the future no matter what the future has in store for her,” expresses Hema Neelesetti, her face suddenly alive with such emotion and desire. “I want her to live her life to the fullest and never forget that she is above her diagnosis and, above all, she is loved.”

With parents like Hema Neelesetti and Suresh — ones whose strength and love will traverse even the darkest of days — Sanjana says that her life becomes a little more livable. They are the light in the darkness that allow Sanjana to take her mind off the diagnosis and focus on the future. And one thing’s for certain: Sanjana has big plans for her future.

“I have my whole future planned out. I plan on majoring in business and going to law school to become a corporate lawyer. From there I would be interested in entering the world of politics and getting involved from that angle too,” Sanjana adds, an ardent passion evident in the sheer strength of her voice. “I try not to worry about how becoming blind will impact my career. For the time being, I just try to live.”

As our time comes to an end, I look into Sanjana’s eyes for one last time. I look past the suffering, the pain, the tears.

All I see is beauty. 

And hope.

And happiness. 

And for the first time all afternoon, I see Sanjana. 

Aryav Bothra is a personality writer and food critic for Oswego East High School’s online news magazine the Howl

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