Living with Keratoconus; The hardest battle


In 2010, I was diagnosed with a degenerative eye condition called Keratoconus. Basically this condition involves the blurring of vision due to the thinning of the cornea. Its non-reversible and the only way to regain sharper eyesight is to wear hard contact lens which were incredibly uncomfortable. After a few attempts, I gave up with the lens as it would often move about and cause me a great deal of discomfort. I had to make do with wearing my glasses that did not do much to mitigate the effects of the condition.

I cannot remember when this genetic disease first struck me; maybe it was during my 17 – 18 years. I remember slowly starting to experience difficulty in reading. I very often attributed it to a change in my spectacle degree. There really was no reason to suspect otherwise. When my eye specialist eventually diagnosed me with this condition in 2010, I felt so angry at the world.

By that point, reading had become difficult. It took me three times the usually length of time to finish a journal article as compared to the rest of my peers in university. I often also experienced headaches after lectures and seminars when I had to squint to clearly see what was written on the board.

Even more dangerous, was my increasing inability to gauge distances between vehicles and me whenever I had to cross the roads. I would misjudge the gap between steps, which caused to me to trip or fall over. I stopped playing sports such as badminton or captain’s ball that required me to gauge how quickly an object was coming towards me. The first year of learning about this condition was very difficult. I was frustrated largely because I knew that there was no cure. The doctors had very little answers to the questions that I had. I was told that the thinning could stop in 5 years or in 15 years. There was no end in sight and that immensely scared me. The Internet continued to confuse me further as I read stories about people who had gone nearly blind from the condition.

The fear and anxiety that I felt continued to fester in me for the first year. Looking back, it was the uncertainty that scared me the most. Also, the fact that no one I knew was able to completely understans my eye condition. How was I to illustrate to them the halos that I would see at night or the fact that bus numbers appeared wrongly to me. On some occasions, I had flagged down the wrong bus and would sheepishly still get on because I was simply too embarrassed to step back. This seemingly innocent occurence was actually an indication of a bigger problem that I was fighting. It was my refusal to acknowledge the condition. I was simply refusing to accept my condition resulting in resentment towards the world and myself.

The first semester after I encountered this condition, I saw my grades dip as I struggled very hard to maintain the same academic lifestyle that I had. I began to place unwanted pressure upon myself. My eyes grew tired easily and I craved more sleep but I refused to give in, believing that if I could convince my mind to behave normally my eyes would eventually adapt. Sadly, though the mind is not necessarily always stronger than the body and eventually the fatigue caught up with me. I began to crumble under the pressure that I had placed upon myself.

“At times what you expect and what happens don’t match. The faster you accept and adapt to what happened and work towards creating what you believed, then what you expected gets created in a whole new way” Sujit Lalwani
It was towards the second half of 2011 that my life changed. I had started reading books on philosophy and somewhere along the line, I realized that I had to surrender to the world and my circumstances eventually accepting my situation. It was a long process especially the part where I had to convince myself that I had to recognize and understand the condition while cultivating the believe that things will sort out on its own. I had an amazing bunch of university classmates, secondary school besties and dedicated professors who helped me through this transition, each in their own ways. I clearly remember an incident when one of my professors printed a test worksheet in A3 size for me right after my first eye surgery. It was then that I realized that I was not alone, and that I did not have to fight this battle all by myself. A part of me had been worried that the world would view this condition as my weakness and penalize me for it but the people around me proved that it was otherwise. There was even a memorable incident where one of my friends told me about she found me inspiring for continuing to scale new heights.

When I accepted my condition, I stopped being afraid of the future. The unknown ceased to paralyze me. In fact, the uncertainty empowered me at many points in my life. It made me stronger and more resilient. I acknowledged that it might take me longer than some of my peers to accomplish certain things but I kept at it anyways. Soon enough, I realized that both my mind and body would subconsciously adapt to my new condition. I felt my reflexes get better as well my other senses working harder to make up for my lack of clear vision. By surrendering to the situation, I had allowed for my own body and mind to come up with its own compensation package. By the end of 2011, I was utterly convinced that the universe had conspired to take good care of me. The feeling was immensely liberating.

After close to about two years, I was finally at ease with myself. Keratoconus may have taken away the clarity in my physical vision but it had also equipped me with a lens of optimism that would shape my personality and character in the years to come.

I still fall down a lot. I definitely squint at the computer screen. I can see up to eight moons at night. I dare not jaywalk across the road for the fear of being knocked down by a car. These days, I have trouble remembering faces and recognizing people from afar. I still crave a lot of sleep so I sleep as much as I need to. My mother nags at me for sleeping at “inappropriate hours” but I still do it anyways because only I should judge and decide on my needs. I also occasionally still do flag down the wrong bus BUT the difference is that now I am brave enough to step back and signal that I am sorry to the bus driver before proceeding to wait for the right bus to come. I have made peace with myself and accepted that my vision is never going to be what it was but I am confident that I will be fine with what I have. I am no longer afraid that I might fail in something that I do, because I have already won the greatest battle of all, the battle with myself.

Hemma Balakrishnan

This story was shared with us by Hemma Balakrishnan, a member of our keratoconus community on Facebook. it was originally published on TheCambelles.com.

2 comments:

  1. I think it's great that you've come to accept your condition. However, you should really give the lenses a second try. Go to a different specialist, try out other lenses. You always have Cross Linking surgery otherwise. Don't give up on your vision just because you "accept" your condition. There is more to be done. Remember that feeling when you first put the contacts on after being diagnosed with Keratoconus. Didn't you feel like Superman? I know I did.

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  2. I second this....do not accept a substandard life you will definitely regret it in later years.please try a good fit of lenses ..you still have time.if in India please get in touch with me.

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