I’ll never forget that day and how empty I felt.
As I sat down on the eye specialist’s chair, he handed me a box of Kleenex and broke the news – I was slowly going blind.
“You’ll have to give up your independent activities,” the doctor told me. “School will be too hard, and you’ll have a very hard time finding a boyfriend,” he said. I asked a few questions, searching for any hope to hold on to. “Why would I hang your death sentence over your head?” he responded.
As I left the doctor’s office, I remember that I didn’t even look both ways crossing the street. I just didn’t care anymore.
That night, as I went to bed, I was afraid to close my eyes for fear that I wouldn’t be able to see when I woke up the next morning.
This new reality was in stark contrast with my personality. I’d always been a go-getter, full of ambition and positivity, ready to dive head-first into life.
As a teenager, my vision problems were limited to confusion with colours like purple and brown, or grey and lilac. Nothing more than a small inconvenience.
I was 21 years old, on a spontaneous backpack trip with a friend in Greece, when I first noticed that I was having trouble. Being in an unfamiliar environment, I found myself walking slower, being more cautious, and looking down at the ground a lot more. Differentiating between steps and flat surfaces or focusing at night was harder to do.
When I got back home from the trip, I began to feel that I was losing my sense of independence. I was usually out with friends, getting coffee, shopping, laughing. Now, my safe zone slowly became more limited.
I didn’t want people to see me tripping or looking clumsy, so I kept close to home. For a while, I continued to go to the gym because I love working out, but I stayed on the same machine to be safer. I tried going on a date, but was embarrassed when I held the restaurant menu upside down and got lost on my way back from the washroom.
Soon my journey led to a diagnosis of retinitis pigmentosa, a genetic disease that causes loss of peripheral vision, as well as problems with depth perception and light sensitivity. I felt like my world was closing in on me, and I was losing my spirit.
Slipping into depression, I decided I had a choice: I could give up, or keep going. It was time to hit reset on my life.
It was about this time that a friend suggested I contact the MAB-Mackay, and I’m so glad that I did. It was like a brand new start for me.
Everyone was so welcoming and ready to go the extra mile to help me find solutions to all the challenges I faced. They made me feel safe and understood.
Among the special people I met at the MAB-Mackay was Kate, who taught me how to walk with a white cane. This was a big step, because it meant showing others my vulnerability. But I wanted to break my cycle of isolation, so I embraced the cane and it became a symbol of transformation. I chose the most challenging areas of the city for my training in order to push myself out of my comfort zone, including the Berri-UQAM metro station and the cobblestone streets of the Old Port. It feels great now that I’m more confident with my mobility and able to navigate the city again on my own.
It was Sara who helped me get back on track with my studies. When I told her I wanted to quit school because I couldn’t read anymore, she helped me find solutions. She gave me a 6-month course in uncontracted Braille – an experience which she made lots of fun. This gave me a real sense of accomplishment, and is so helpful in my presentations now that I’m back at university.
Other specialists from the MAB-Mackay helped me with independent cooking skills, rearranged the lighting at my home so I can function better, taught me many tricks and special apps on my smartphone, and guided me towards my dream career path by helping me see professional qualities and skills I didn’t know I had.
I’ve learned so much at the MAB-Mackay, and have since regained my confidence and positive spirit on life. They showed me that anything is possible, even with my vision loss. I’ve taken up kick-boxing, am completing two certificates in Public Relations and Entrepreneurship at McGill, and have taken up public speaking. My goal is to start my own business as a life-coach.
None of this would have been possible without you!
So here I am today. I’m legally blind, only able to see what’s on the sides and not straight in front of me. Nobody knows if my eyesight will go away completely, and how long this will take. But I refuse to let this get in the way of my dreams. My vision for life is now clear, and I know the MAB-Mackay will be with me on this journey.
With my heartfelt thanks,
Maryam, 29 and full of dreams