Spell check doesn’t recognize the word nystagmus. Neither do most people when I explain that it’s the reason why my eyeballs constantly shift from side to side, sometimes slightly wobbling, sometimes darting rapidly.
As a person with albinism, I was born with congenital nystagmus and the resulting weak eyesight. Whenever I get into candid conversations about my vision, the question I’m asked most often is, “Does your whole world keep shifting about too, because of the way your eyes move?”
Thankfully, it doesn’t. But focusing on anything specific is pretty difficult. That’s why I can’t recognize faces easily, especially from a distance or within a crowd. Reading signs — whether in the streets, shopping malls, or at airports, train and bus stations — is impossible, as is deciphering menus printed on walls behind the counter at cafes and restaurants.
Technology helps. I click photos of signage or text on my phone and zoom in to make better sense of the world around me. I’m extremely fortunate to have vision that’s considerably better on the ocular spectrum of people with some form of albinism. And I acknowledge that I’ve had things a lot easier because of a privileged background with access to resources and the support and help of family and friends.
Nonetheless, nystagmus slows me down. Just like I zoom in on the phone screen, I need to zoom in on — get awkwardly close to — everything in my physical reality too, whether it’s a book I’m reading, food I’m enjoying, an ATM I’m withdrawing cash from, or the laptop I work on as a digital nomad reaching for my dreams of traveling the world. Text-to-speech is among my favorite inventions and I saved up to recently splurge on a MacBook Pro for the way it’s so simple to have any text read out loud to me at the tap of a button, and for the unrivaled trackpad that makes zooming in and out a breeze.
I often get quizzical looks from people who don’t immediately understand why I hold my phone screen so close or hunch over my laptop when working, but I’m all too used to being stared at and it doesn’t make me as uncomfortable as it once did when I was still an anxious and timid teenager.
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People often overlook that living with any kind of different abilities often leads to other issues like low self-esteem, anxiety or depression. Growing up, I have had to work through my fair share of inner turmoil to accept myself and not let my eyesight or my albinism define me.
As a “brown” person who is whiter than most Caucasians and with hair that a boy I liked once told me is described as “strawberry blond,” I’ve dealt with unwanted attention and probing personal questions all my life. I’ve grown to be more amused than offended by the confusion that my Indian identity causes, particularly when I hand over my passport for scrutiny at airports or hotels.
“You don’t look Indian,” is something I’ve heard all my life, most of the time with a hint of a positive connotation like it’s a good thing. And it’s always strange to experience white privilege when I’m not really white — I’m often treated like a foreigner in my own country.
My appearance has ceased to bother me as much as it did when I was younger, but that’s not to say I don’t get self-conscious. I often find it uncomfortable to hold eye contact and still feel wracked with shame when accused of not smiling or waving back at someone or failing to understand their gestures. I never pre-book rides from airports in foreign cities because I know I’d never be able to find my name on a placard in a crowd of strangers.
Sometimes, I can sense people pitying me, particularly when I share that I can’t drive, and they even go on to recommend ophthalmologists who helped someone they know. “Why don’t you just get surgery?” I’m asked. As if I’d never have thought to look into this option myself.
Even with all the advances in medical science, there is still no reliable fix for nystagmus and even if there was, I’m not entirely sure I’d jump at the chance of getting my eyes operated on. I’ve made my peace with living with nystagmus, using public transport and — thanks to technology once again — Uber. I take heart in the fact that this way of getting around is also better for the environment.
I grew up feeling it wasn’t fair how I couldn’t see as well as everyone around me, how I had to sit right up front in class throughout school and still not be able to read the board, and how I couldn’t play ball sports to save my life. But all these years later, cultivating a sense of gratitude has changed my perspective.
I am deeply appreciative for the wonderful support network I have and the ways in which I’ve been able to reach for my dreams. I’m grateful for my job and the ways technology helps me out, and I am hopeful that companies and governments will invest more and more in improving accessibility for a truly inclusive world.
There are still moments of frustration when I think if it wasn’t for my eyesight, perhaps I would have achieved a lot more than I have so far, but I refuse to wallow in such negativity. I refuse to make my nystagmus an excuse for not going after my dreams. Just like with everything else in my life, I’ll take my own time to get where I want to be.