In my late twenties, I started noticing what seemed at first a banal change in my vision. While seating in my leaving room one night, with the lights deemed, munching on some chocolate chip cookies and watching a rerun of Star Trek, I was suddenly showered with what can only be described as my own personal display of fireworks in the form of intense flashes of light suddenly appearing in my field of vision only to fade away as suddenly as they’ve appeared. While somewhat intrigued by this, I didn’t think too much of it and soon forgot all about it when the shimmering lights subsided to a barely noticeable flare from time to time. I came to learn later that this is called photopsia and can be indicative of serious ophthalmologic problems when I casually mentioned it to my family doctor during a routine visit. I was referred to a specialist for further testing, but luckily everything came back negative and I was sent on my merry way reassured.
Three years ago, while seating in the same leaving room, I noticed a significant change in the peripheral vision of my left eye. It was as if a blind spot suddenly appeared on the bottom part of my eye. While a little worried, I was far from frantic and only booked an appointment with my doctor a few weeks later. Once again referred to an ophthalmologist for further testing, I honestly wasn’t expecting much to come of this. But life has a way of throwing you a curveball when you least expect it. Not even in my worst dreams of potential apocalyptic scenarios or dystopian futures did I contemplate the possibility of one day going blind.
“Retinitis Pigmentosa”, my ophthalmologist said gravely while looking somewhat grief-stricken. “Never heard of it”, I responded flippantly attempting to lighten the mood and desperately trying to ignore the increasingly erratic pounding of my heart. I’ve been a nurse in the past and I have heard this same tone of voice from doctors a thousand times before. Despite my somewhat forced-bravado, I knew deep down that this announcement didn’t bode too well for me.
Retinitis pigmentosa (RP) is a genetic condition that slowly damages the retina. The condition progresses throughout a person’s life and affects approximatively 1 in 4000 people. Me; the girl who never in her life gambled won the equivalent of the jackpot in the lottery of genetic eye diseases. RP is a degenerative condition that starts with a loss of peripheral vision and often ends with a loss of central vision, leading to complete blindness.
Fear. I never knew before how all-consuming fear can be. I never knew before how two little words can suddenly conjure up in your mind a feeling of utter dread that sticks to you like a second skin. If the diagnosis was a shock, it is the prognosis that leaves you in tatters: What will happen to me? How long do I have before I lose my sight completely? Will I be able to complete my Doctoral Thesis before I go blind? How can I remain in Academia if I can’t see anymore? Will I pass this along to my children? How will I take care of my parents?
Having Retinitis Pigmentosa is very much akin to seating in the passenger seat of a car slowly and inexorably going toward a wall. You know you will eventually hit this wall, but when this will happen and and how bad the crash will be remain a mystery to you. You are left alone with your fears and the interminable and purely nightmarish scenarios your mind comes up with. This fear paralyzes you, consumes you, and in almost every aspect possible owns you.
What is worse than the fear however is the loathing or more precisely self-loathing. One of my greatest fears has always been vulnerability. Depending on others is a process that leaves you open and gives them the opportunity to hurt you. Independence and self-reliance have been for the better part of my life my own personal mantra. Everything I have ever done was meant to lead me to a place where I could take care of myself and my loved ones. RP has robbed me of that certainty. I no longer know if I will be able to take care of myself or live life as I see fit. The idea of becoming a burden on my mother—who has already sacrificed so much for me—sickens me. I was suppose to offer her respite after a long and difficult life, not become a source of sorrow and worry. No matter who much I know rationally that I have done nothing to bring this upon myself, I cannot shake this feeling of profound guilt for all the sadness my mother will experience. I wish more than anything else that I could spare her that.
To live with RP has meant vacillating between anger and depression. I live somewhere between hope and despair. Hope that somehow things will work out, that I’ll find a way to adapt and live a meaningful life despite my blindness. Despair however is never far behind. No matter how optimistic I try to remain, I cannot ignore the massive challenges I’ll have to face. The idea of rethinking my life and finding a new path terrifies me, because I can’t honestly see one for the moment. The idea of losing the ability to write and express my thoughts, or hold a book and relish in the feel of it as I read it cover to cover, or marathoning through my favourite Star Trek episodes breaks my heart. We live in societies that by their sheer structure exclude those who are different. Blindness puts you in the outskirts of a world that is increasingly visual, where every year a new smartphone is released with better pixel density to help us take even more beautiful pictures. To be blind in a world made primarily for and by the sighted puts you inevitably in the margins of a society where the blind are often out of sight and out of mind.
Faith has been a source of healing and comfort. I’ve often said Alhamdulillah for Islam but I don’t think I ever meant it as much as I do now. Being Muslim, we are told from our early childhood that nothing happens without the will of Allah (swt) and that we all have a destiny to fulfill. “Nothing shall ever happen to us except what Allah has ordained for us. He is our Mawla (protector). And in Allah let the believers put their trust” (Surah Tawba, Verse 51). We are told as Muslims that we will be tested in this Dunya (world) with our health, our wealth, our families, our knowledge. We are told to hold on to the rope of Islam and never lose sight of the fact that we are to live in this world like strangers (Ghurabaa), to never get so engrossed in this life that we lose all consideration for our Akhira (after life). “No calamity occurs on earth nor in yourselves but it is inscribed in the Book of Decrees before We bring it into existence. Verily, that is easy for Allah. In order that you may not grieve at the things over that you fail to get, nor rejoice over that which has been given to you. And Allah likes not prideful boasters” (Surah Hadid, Verses 22,23)
I’ve long debated whether I should write this piece or not, after all these days everybody seems to be in a hurry to reveal their deepest and darkest secrets to perfect strangers online. I can’t deny however that sharing this and being able to say it out loud has been quite cathartic despite my earlier trepidations. But, the point of it all is not to subject you folks to some sort of misery porn, rather it is about reaffirming the importance of faith in dealing with those darn curveballs. Islam has given me the strength to accept—with some grace I hope—what is one of my worst nightmares. It has allowed me to come to terms with it, say Alhamdulillah ‘ala kuli hal, and not succumb to desperation. I do not know how fast or how slow my condition will progress, but I have every intention of living my life to the fullest with the permission of Allah (swt). And so, in navigating the intricacies of my new-found condition, I pray to Allah (‘aza wajal) for courage, patience, and wisdom. And to you my beloved brothers and sisters in Islam, I wish you health, long life, and the highest levels of Iman no matter what comes your way.
Verily, after hardship comes ease (Surah Ash-Sharh, Verse 5)
**For more information on eye diseases and the resources available to those suffering from vision loss, see below:
Foundation Fighting Blindness
Canadian chapter: http://ffb.ca
American chapter: http://www.blindness.org
UK chapter: http://www.rpfightingblindness.org.uk/home.php?home=yes