Here’s the quickest version of my roller coaster history: Low vision, to fully sighted, to no vision.
I was born with a cataract in my left eye which led to more than 10 operations and ultimately resulted in the loss of my vision due to a retinal detachment. In grade four, I developed acataract in my right eye. I was offered a surgical option again, but my past experience made me skeptical (yes, even at 9 years of age!). For anyone who is familiar with how cataracts work, you know that they don’t magically disappear; instead, they slowly develop and cause the progressive loss of one’s vision. To this day, my fourth grade teacher, with whom I’m still in touch, fondly remembers me as the little girl with a black mark on the end of my nose, which I invariably sported after pushing my face up against paperwork written in black ink!
After my teachers and I started to realize that my face just couldn’t get any closer to the large print text, I started to learn Braille, use a screen-reader called JAWS (Job Access with Speech) and travel with the white cane, which was the bane of my teenaged existence! By age 15, my vision had deteriorated and I was really able to see only broad shapes and colours. This was when I made one of the most difficult decisions of my life, which was arranging an appointment with my eye specialist and my family to discuss the cataract removal operation: What were the risks? How much would I be able to see? What was involved in the procedure? I was relieved to hear that I had only a 1 per cent risk of retinal detachment - no problem right? In January 2002, I had my cataract removed. For the first time I was truly able to see the world. On the drive home, I looked out the window and enjoyed the beauty of fresh snow on the trees, I read the tiny print on random items that happened to be within reach, including a Kleenex box, and I pulled out pictures that I had long-carried in my wallet, and started to ask who was whom. I called my dad who, after getting the all clear from my doctors, had returned to work. I told him that his little girl could see; the tears started all around, my mom, vision itinerant teacher, and even my dad were overwhelmed.
After a year of sight, I lost my vision entirely due to medical complications and despite five additional surgeries.
I had vision enough to read print, to see the details of an elephant’s face, to tell time using a clock rather than an audio read out ,to walk without the use of any aids and so much more.
I have been asked if I regret choosing to have the intial operation time and time again. I ruminated on this question for a long time, but ultimately I concluded that the answer doesn’t matter. I realized that the only way forward was to accept the reality for what it was. Acceptance however, doesn’t mean that I can’t be heartbroken about my loss. I have days where I wish more than anything that I could relive that one year of sight. Sometimes I get angry or feel like I would have been better off not knowing what I was missing. Instead, acceptance has meant that I give myself permission to grieve every now and then, and to do whatever else I need to do so I don’t feel defeated.
For those living with a disability: Remember, that although it might suck - no sugar coating here - it doesn’t have to define you or prevent you from living a happy, healthy, successful life, and that it really can get better.
For those trying to support someone with a disability – especially one stemming from a loss – give them space to be hurt and angry. Validate their emotions and try your best to offer them hope for the future.
Thank you to Arshina for sharing her story. For more articles from Arshina, click here.
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