Life is not measured by the number of breaths we take but, by the number of moments that take our breath away!!. Life is too short to think about problems. There is time only to think about alternatives and solutions. Do follow what mind says and say yes to challenges. Make the most out of it.
When Keratoconus pulled me down
Right from my young age, I had good interest in science and was keen in learning new things. I used to spend a good time and dedication into academics, as I wished do my higher studies at one of the top colleges and get into research.
But things did not work the way I wished to. I was affected by a strange eye disease during my teenage. This eye disease reduced my vision drastically and I was not able not read my textbooks and difficult to recognize numbers and print.
When I visited an eye doctor and she advised me to start using spectacles. But it did not a perfect solution and I had to keep on changing the power of my spectacles according to her prescription. Finally when she found that she failed, she complained that I could see very well and I was just lying. Confused, at that very small age, I believed what I had was the normal vision. Yet I wondered, how people are able to read hoardings and do a catch while playing cricket.
Years passed away and my little brain involuntarily adjusted to this situation badly by selectively hiding things which I could not see clearly.. minimizing eye strain. I could not recognize what was written on the class, black board even when sitting on the first bench. Things became worse when I started bumping on objects and people, sometimes missing questions and words from tests and textbooks. But reading from computer monitor, keeping the monitor close enough was very comfortable.
My academic performance went down drastically and so as my reading habit. ...worried and depressed with very unhealthy support from all around, ..I reached a stage where I was completely confused . With a very good expectation, doped with my interest in science, Fr.Antony Thockanattu, the then principal of St Antonys Public School, Anakkal gave me an admission for plus one (equivalent to pre degree), even though my matriculation marks were not that outstanding.
In 2001, while doing my +1, a doctor could identify that I was actually suffering from a rare disease called Keratoconus, a degenerative, incurable eye disease on both eyes.. and by then it has reached a bad stage. The only treatment available was to transplant eyes: as the doctors, even from the well known eye hospital of Kerala, Little flower hospital at Angamaly were not confident to do that, I was advised to use contact lenses.
This special kind of hard contact lens with a lovely name RGP;s or Rigid Gas Permeable contact lenses gave me a comfortable vision, at the cost of a comfortable eyes. Wearing these RGP lenses were painful, as these hard lenses gave the cornea a better shape by forcing it to the shape of the lens... the feel is very much same as somebody pulling eyes out. As I had to travel along the dusty roads to reach my school and back, it was very painful during most time of the day. The presence of a tiny dust inbetween eyes and lens was just make that day intolerable.
RGP`s lenses are not to be worn for extended period of time..not more than a few hours a day, my daily life was limited to those few hours.
As life changed with Keratoconus
Life became a very big challenge and a big question too.
Looking without lenses was like looking through a misty window pane. Everyday the first thing to do was wearing the contact lenses..even before brushing teeth. I used to keep my CL cover very near to my bed, so that I could easily find it in the morning ..it minimized the chance of banging my head on the wall.
The funny gestures I made due to discomfort of using contacts made me a laughing stone very often. At times the lenses used to slip away from cornea and move behind eyes..the occasions of panic, confusion and helplessness. My friends Manaf Basheer and Jibil John, had a hard time searching when the contact lens used to fall off from eyes. I could not play in the open as any sudden movement of head would pull out the lenses and make me blind. I had to be very careful while traveling.
Life became difficult with a lot of should nots and could nots. Should not travel, could not see at night, should not sleep wearing contacts ..could not drive..should not get wet...a very long list like a supermarket bill...which affected every aspect of my life.
All these difficulties ate away the prime time of my life, the time I could have been successful in life with a great life and an awesome life. With a great difficulty I managed to complete CBSE schooling with a few subject marks just above the fail threshold, and then do a bachelors and masters in Computer Science.. though I wished to do engineering. Though I was campus placed at a company called Lucid Imaging in Bangalore.. a very interesting job which deals with Machine Vision and Robotics, I had to quit soon, due to all my difficulties.
Experienced : Now I should face it.
Life moved on jumbling between self employment, studies and teaching. Thanks to internet and social networks, I could contact a few others from some corner of the world, suffering from the same disease. All of them had the same kind of life. Most of them lost their jobs, many of them lost their hopes and few of them lost their life. I learned that there is no end to it and no gain keeping it in mind. I made my point that it should not be a reason to stop traveling and do things I wanted to do. By now I have traveled all around India and trekked several high mountains of the Himalayas. “Yes! I did it”.
I have made a film on trekking in Himalayas called "Goecha La: In search of Kangchenjunga" (IMDB nm5189031) and help to make the award winning coffee table book "Himalaya : Mountains of Life" by National Geographic Explorer Sandesh Kadur and Kamal Bawa: The National Geographic Research Head. I am happy that I am a member of many organizations like the National Geographic Society, the Nilgiri Wildlife and Environmental Association and ASSTA Paragliding Kerala.
Our Little step to help Keratoconus Patients
We have started a little initiative to help Keratoconus patients in India. The Keratoconus Fundataion India, (https://www.facebook.com/groups/keratoconusassociation/) is a hub of patients, doctors and journalists. We plan to help Keratoconus patients by giving them a positive feel to live and
provide information about treatments in India. We are slowly planing to help poor patients by providing financial support for eye surgeries. In some time the income generated through this website from advertisements will be slowly used to accomplish the mission.
By the time I completed by college, I reached a very near to a critical stage called aqueous humor, which ruptures the cornea due to extreme thinning and contact lens could not fit in my eyes. I underwent corneal transplant for both of my eyes recently: though I dont have a normal vision, I have got enough of it to live.
In the News
Snail: Thengummoottik, Kappad PO, Kanjirapally, Kottayam, Kerala
DURING MY GOECHA LA TREK IN SIKKIM@5200 meters above sea level... The mountain you see behind is the highest mountain in India (Third highest in the world), popularly known as Kanchenjunga or `Five treasures of snow` at the border between the countries of India and Nepal. One of the most beautiful places in the world though extremely difficult to enjoy it, due to all superlatives: extreme winds, low temperature and lack of oxygen.
Our expedition of four members + four sherpas + four yaks ended here after tough trekking for six days continuously. Only three of us could reach this point. Photo Credits : Lucas Tan