10 November 2016 marks the first ever World Keratoconus Day. Having had keratoconus for about seven years now, an entire day has finally been dedicated to my poor and fuzzy vision. Never heard of keratoconus? Read on then.
Keratoconus is basically a degenerative eye disease that inflicts your cornea, causing it to thin and eventually distort its shape. This conversely leads to a decrease in the quality of vision. As of now, there appears to be no cure for keratoconus. There are some surgeries which can be performed to slow down the thinning of your cornea and some special (but incredibly uncomfortable) contact lenses which can temporarily hold the shape of your cornea providing short term clarity in vision.
But the reason I am writing this is not to talk about keratoconus but about life with keratoconus. Life with keratoconus is tricky. Firstly because no two days are ever the same. I can never predict how bad or ‘good’ my eyesight is going to be when I wake up. On a good day, I have less problems than usual with gauging depth and distance; meaning that I could possibly attempt to jaywalk and the odds of me falling off steps greatly decrease. Even then, when night rolls along, the poor vision keeps me in wretched clutches in return for some magical but annoying halos in my view.
On bad days, I trip at least once some point during the day and reading and writing become a chore.
Today, I want to talk about some of the challenges that I have faced with keratoconus.
During my early years of trying to deal with keratoconus, I was constantly afraid of letting people know that I had it. On one of my not-so-good days, I was sitting at a deserted bus stop waiting for bus 89 to arrive. From a distance, I saw it approaching and I stood up to flag it because the bus stop was empty and I was afraid that the driver would zoom past me instead of stopping. Unfortunately, I had flagged bus 88 instead. I felt so stupid at that moment and I was just too embarrassed to admit it, so I got on the bus and alighted a few stops later. This happened frequently enough and after a while, I was just thankful that I was on a bus pass system.
My initial years of battling keratoconus were characterized by self-pity and self-hate. I hated myself for being so weak. Every time I had to confess to someone that I had keratoconus, whether it was my friends, professors, scholarship committees or even close family members, I felt like an idiot. It did not help that keratoconus has no visible physical manifestations to point out to someone. I have had countless number of people look me in the eye after that conversation and tell me, “But your eye looks fine!” But no, it isn’t.
For a condition with so little physical evidence, keratoconus was unbelievably impactful in its physical limitations. I eventually had to stop doing some of my favourite activities. I stopped bowling because the pins appeared too distorted. I stopped cycling for the fear of gauging distance wrongly and therefore falling over or worse knocking someone else over. I could no longer climb mountains and hills when on holiday because I was afraid that I would trip on uneven steps. I had to book certain seats in the cinema if I wanted to be able to read the subtitles. I also never got around to getting my driving license.
The second thing that I want to share is my realization that people never truly understand what you go through.
I have been blessed with somewhat great friends and family who try their very best to be mindful of the fact that I do not see as well as everyone else, that I have trouble coming down steps which are not demarcated properly, that I cannot go hiking in mountains and hills where there are tricky or rocky steps to navigate. I am also amazed by the people in my ‘besties’ group who are often quick enough to take my hand on a particularly dark night – sometimes even before I realize that I need the help.
I can still recall my younger cousin running towards me during our Bintan trip to hold my hand to help me across a dark patch of grass next to the pitch black swimming pool and asking me why I did not say anything to remind him. There are also the days my colleagues avoid asking me to read small numbers and forgive me when I write or view numbers wrongly, even though until today I hold my breath half expecting to be chided. Also, I am writing this on my iMac that my father bought me, because at some point, working on my 13 inch MacBook was just not comfortable enough.
But there are also days when the people closest to you show that they do not truly understand what you go through or trivialize your feelings. I had recently posted a rant on the Keratoconus Facebook Group about how my mother had made a very offhanded comment about how “all I do is sleep”, simply because I was not able to find some time to clean my room before the festive season (I am working and completing my masters simultaneously). That comment stung and I did not speak to her for days after that. It wasn’t so much what she had said that irked but the implication behind it that bugged me.
I realized that even my mother who had lived with me and my eye condition for eight years did not fully understand it. She did not understand that sleeping was not a luxury in this case. How can it be a luxury when it is not a choice? I do not take naps because I enjoy it or because I am free. I take naps because it is one of the few ways for me to remain functioning and productive in the second half of my day. In a related but separate incident when we were drawing rangoli:
Me: “A, why are you so determined to be a perfectionist?” (my eyes hurt from straining to see the lines at the sides)
A: “Why are you not?”
Me: “When you have lived with my condition for so long, you start realizing that it is alright for things to be imperfect.”
A: “I knew that this was coming. You always come back to this.”
Her comment about my condition was dismissive and to be honest, it made me sad. It made me wonder whether I was giving too much importance or according too much weight to its role in my life. But why shouldn’t I? I have spent the last seven years of my live rearranging it to live on the terms that keratoconus has dictated. Surely there is nothing wrong with me trying to explain my life in terms of keratoconus and its effect on me.
I guess my point is that no one will completely understand it or you. Even a fellow keratoconus patient will not understand it the way you do. So don’t apologize for how you feel. When someone tries to make you feel bad for bringing it up or accuses you of using it as a ‘convenient excuse’, remember that they have not walked in your shoes.
Today is the first ever World Keratoconus Day. If you are suffering from keratoconus, there are a few more things that I want to share with you:
- When you have finally come to terms with your eye condition, try some of the things that you may have previously given up because you were afraid. I recently have gone back to cycling and have thoroughly enjoyed it. I have also picked up squash despite initially being afraid that I would not be able to gauge the distance and speed of the ball. Surprisingly, I’m not too bad at it. So go ahead and try something you have given up. Who knows, you may surprise yourself!
- You are not always alone. There is a very active Keratoconus Support Group on Facebook and although I do not always contribute or comment on their posts, it has kept me going during some very hard times. I have read posts from people who have lived with keratoconus for far longer than I have and distilled hope from their experiences. I have also provided hope to some very lost and afraid newly diagnosed keratoconus patients.
- Most importantly, what I really want to tell you is that you do not have to apologize for yourself, your keratoconus and the toll it has taken on your life. Remember to celebrate the small victories in your battle. If you are a friend or family member of someone who is battling keratoconus, I am going to share with you a message one of my cousins wrote to me during despairing times:
I am sorry people around you don’t understand how it feels like to be you and the difficulties you face on a daily basis. It’s very frustrating and tiring to explain and you probably just give up telling them because they simply can’t understand. I can’t do much to help you but I can offer a virtual hug and hope you feel better soon. *hugs*
Sometimes, all we need is a hug and some bubble tea. Okay, that’s just me, but you get the drift.
P.S.: I still flag the wrong bus but now, I just don’t get on anymore.