I Wake Up Every Morning Fearing I’ve Gone Blind: Instagram Model
Video Editor: Puneet Bhatia
Camera: Abhay Sharma, Nitin Chopra
Nikita doesn’t write her last name on social media and adds the suffix ‘Kat’ to her first name. She doesn’t like to use it, she says, and wants to make it on her own.
‘Making it on her own’ entails fashioning photoshoots for herself in self-purposed studios which are actually living rooms of friends’ houses. ‘Making it on her own’ also entails clicking a Bluetooth button clutched firmly in her hand, in “random blindness”, and squinting at the camera, hoping she’s got a nice shot. She has to ensure it’s not too sunny where she’s shooting or she’ll be holding her head and blinking her eyes for days after.
You see, ‘making it on her own’ for Nikita ‘Kat’ is also battling a little-known condition called Keratoconus – which she describes patiently to people who ask her as “conical eyes”. Keratoconus is a condition where the cornea of the eye bulges outward into a cone – causing light rays to disseminate on the retina at multiple focal points, instead of one. Simply put? Her conical cornea gives her ‘ghost vision’.
“I see 50 moons in place of one,” she tells me simply.
So can she see me right now? “I can see shapes. And the colour – the colour of your skin. But I can’t see a nose, ears, eyes – all of this, of course, without lenses. With my lenses on, and if I get really close – like I did the first time I met you – I can see properly.”
"I Don’t Want to Go Blind”
I’m not sure what ‘properly’ means for Nikita who describes feeling around for the banister of a staircase in an unfamiliar place – “because the steps in front of me look like a giant sled” – but she has learnt to compartmentalise her life ever since she was diagnosed with the debilitating eye disorder in college. Attempting and giving up a finance job because she couldn’t see the numbers (“2, 4, 6 and 8 all look the same to me – round squiggles”), she now runs an Instagram page where she models for brands.
“I shoot by myself – setting up a tripod in random locations, and then walking towards it, clicking the Bluetooth button in my fist. I have to wait for the sun to go down if I’m not wearing my hard lenses, because I’ll hurt for days after. Then, I edit them myself. I’ll edit for a day and rest the entire day after because the glare from a laptop device strains my eyes.”
When Nikita’s poor, gradually deteriorating vision was diagnosed by a doctor as Keratoconus, her parents were told that she could go blind “anytime, any minute” unless she got corrective surgery. They’d gotten to the diagnosis late, and therefore, Nikita needed a corneal cross-linking surgery – which, otherwise, patients of Keratoconus who are diagnosed early, can do without.
The surgery has ensured that Nikita’s vision has been restored to a great extent for now, but there are no guarantees, she worries.
She now lives on her own, in a rented apartment away from her parents, determined to work at building her social media profile after being forced to give up finance (“I didn’t want to go blind, you know,” she says of the job she loved but was compelled to quit).
Of Constant Paranoia and Friends in Strangers
Identifying as an Instagrammer today, Nikita Kat has over 41,000 followers who dote on her photographs – followers that Nikita ensures know about her condition.
“I almost always use a hashtag for Keratoconus and post about how easy or hard it’s been to take a particular photo, in sun or shade. A lot of people who suffer from Keratoconus have gotten in touch with me too, because of my posts. We’ve formed an informal support group of sorts, where we’re constantly reassuring each other that we won’t go blind!” Nikita laughs.
Our interview too, was punctuated intermittently by Nikita shutting one eye after the other – an activity she performs almost without notice, she says. But she believes that her talking about it – whether on Instagram (that she laughingly claims to “live for”) and videos like this one, will bring awareness to Keratoconus and the people who have it.
She wants to make a difference, because “Imagine not being able to see properly?” she urges, over and over again.
(FIT is now on WhatsApp. To receive handpicked stories on topics you care about, subscribe to our WhatsApp services. Click here and hit the ‘Send’ button.)