A Sunny Square

 Chinthana Gopinath is someone I have always admired -- an animal welfare activist (a warrior especially when it comes to rescuing beagles from lab testing and finding them happily-ever-after homes), a baker of a different kind (she bakes doggy treats with human-grade ingredients; pupcakebangalore@gmail.com or 9845696308), an intrepid traveller and more. But not many are aware of her battles with a genetic anomaly of the eye.  Yet, her doughtiness and ebullience are unparalleled. And something that I covet much. Read her inspiring story, in her own words, in this guest post.
- Sudha Pillai

Today is the first ever #WorldKeratoconusDay. 

I was 21 when I was diagnosed with keratoconus, an eye condition that's genetic and progressive. My otherwise concave cornea began to change shape to become increasingly conical. Like a prism, it dispersed light, creating multiple, distorted images. The cornea started to thin. And oh, the sensitivity to light! Sunlight was my worst enemy as it would cause the most intense headaches and eye watering. No, glasses do not help with vision. The only thing that helps is rigid lenses that sit tight on the cornea, pushing them down to a concave shape. As the condition progresses, the cornea begins to thin more, which means that the lenses would cause painful abrasions. Eyes would be medicated and bandaged to give them time to heal. Then came the piggyback lenses - a pair of soft lenses to protect the cornea and a pair of rigid lenses on them to help with vision. Given the level of discomfort and pain, this caused, it reached a stage where I could wear them for hardly an hour a day. This meant that I had no functional vision for the rest of the day - I couldn't see the faces of my loved ones, couldn't drive, read or even walk outside the familiarity of my home without help. 

Having keratoconus is being blind but with light. It's not life-threatening, but it's debilitating and life altering. My world was not black but a kaleidoscope of blurry colours. 

I needed corneal transplants by the time that I was 23; I simply couldn't wear lenses of any kind anymore. I registered for surgery and waited for donor corneas to become available. I wasn't afraid of anything that one associated with organ transplants, anything was better than what I was going through. I needed them in both eyes, and it was done four months apart. The surgeries themselves are quite an experience. Done under local anaesthesia, my surgeon and I talked through it all as I watched my eyes being operated upon - damaged part of my cornea removed, donor corneas grafted on and several sutures put in place. As in the movies, I expected to have miraculously crystal clear vision when the bandage was taken off. Instead, I had searing pain, endless watering and I could hardly see. It takes an entire year for the vision to stabilise and you hope every day that it stabilises into something that makes you a fully functional human being again. There is also the risk of your body rejecting the cornea which did happen to me once; thankfully we managed to bring the situation under control. 

Cut to today, what is my vision like. It is like having short-sightedness with high astigmatism. I have near perfect vision with my rigid lenses on, which I can wear for up to eight hours a day. I can function normally without them in known surroundings or with known people. I can read with my glasses on; I can't drive with them. My night vision remains abysmal without my lenses. There are a few bad days when my eyes feel heavy, and the very thought of wearing my lenses makes me cringe. Dogs are meant especially for these days and people who get it, who will compensate, compromise and never make me feel "crippled". 

If we know each other and I float past you in public, know that I'm not arrogant. I'm merely winging it without my lenses on that day. The intense daily headaches from earlier have settled into a dull throb that I barely even notice most of the time. I always wear sunglasses during the day, even when cloudy, as the sensitivity to sunlight stays and dust bothers my eyes tremendously.

Do I regret having had to live with keratoconus? Abso-f•••ing-lutely not. 

I was towards the end of my MBA when my vision was at its worst. I could have quit. I did not. I made classmates read out loud the pages from their notes, listened intently to lectures. I'd wear my lenses for an hour to write exams. I graduated with more than just a decent GPA. Anyone who knows me knows what an elephantine memory I have, I owe it to those days. 

While I was waiting for donor corneas as well as was recovering from surgery, when I couldn't do much else, I discovered the healing power of music. I trained in Hindustani classical music under an 87-year-old guru in the traditional guru-shishya parampara. I learnt the life-changing power of meditation. I can stay still for hours every day without having to constantly do something, and it's a cherished gift that I will carry through the rest of my life. 

And when I got my vision back, I have had to live my life to the fullest, for myself and the unlived lives of my two donors. I have run my own restaurant, go trekking in the Himalayas, my first time was a high altitude trek done alone with a local porter, tried my hand at scuba diving, go on road trips, do the kind of work my heart desires for money or otherwise. The only limitations we have in life are those that we set for ourselves. I don't know how my vision will change as I get older. I already have a mild cataract in one eye from prolonged use of steroids post-transplant. This only means that my eyes will truly absorb, very greedily, every ounce of beauty they behold today.

If my story has touched a chord, please share it. Even if nobody else in your circle has keratoconus, maybe a few would still be inspired to donate their eyes and every other organ they can, once they die. The two people who gifted me their corneas are thanked every single day and oh, the places we'll go!