I remember that early summer day 15 years ago, when my life changed forever.
I was in a taxi headed downtown to see the cars on display for the Grand Prix. Eager to be a part of the excitement, I got out to walk down Peel Street and cut through the parking lot on foot. I looked up for a second to notice the parking attendant in the distance, and he seemed oddly smaller. A second later, I tumbled over a small cement block and fell forward. As I went over, I immediately knew I’d broken my leg. This is how I wound up in the hospital for surgery to put my leg back together.
It was one of the hardest things I had to do in my life – and I could have avoided this accident had I not been too proud to learn how to use a white cane.
The first sign of my vision problems occurred when I was only eight years old, and I started having trouble seeing at night. By the time I was nine, my eyes needed some time to adjust to different lighting when I came home after school. There was also a delay in what my eyes saw and the signals to my brain.
The next year, my diagnosis was officially confirmed by an eye specialist – a rare condition known as choroideremia, which slowly causes blindness. This was the same disorder that my grandfather had, which over time left him completely blind. I had memories of visiting him when I was really young, and it struck me how little he was able to do for himself.
The day of my diagnosis was an extremely sad one for my family. I’ll never forget how devastated my mother was. I was really scared too about how this would affect my future. I asked if this meant that I couldn’t work with my dad in the family business when I was older, which had always been a dream for me.
Growing up and through my teenage years, few people knew about my visual impairment. I still had enough vision to get by, and the deterioration was very small for a while. Although I wasn’t good at sports because I couldn’t follow the ball, I was still able to do many other activities like ski, bike, motorcycle and even drive a car.
By my late twenties, I was quickly losing my peripheral vision and could see things only directly in front of me. I found myself stumbling frequently or walking into poles. Then came the day I had to stop driving.
The staff at the MAB-Mackay have been fantastic – they are proactive and encouraging, and have helped me maintain my dignity and freedom in many ways. I had to re-learn so many things I used to take for granted – like how to put toothpaste on my toothbrush without making a mess in the sink. They taught me how to use cutlery so that food doesn’t fall off my fork, which saves me a lot of potential embarrassment. My low vision specialist even accompanied me to a restaurant to work on eating techniques.
I was absolutely crushed. To me, this meant giving up a core part of my individuality and independence – it was an admission to myself and others that my condition was irreversible and getting worse. I remember my grandfather as being so fragile, so helpless. This was not the future I saw for myself!
I resisted it as long as I could. After my broken leg, I realized that the time had come for me to use a white cane to get about safely. The truth is, I didn’t want people to notice me, to stick out, or to show others that I was vulnerable and needed their help or pity. I remember feeling embarrassed and afraid.
This is how I got in touch with the MAB-Mackay (then known as the Montreal Association for the Blind). From the very beginning, they truly understood all my feelings and apprehensions as I struggled with losing my vision. There were all these different skills and tools they could offer, and over the years I met many exceptional specialists who helped me learn ways to function safely and keep my independence.
Your support helped make it possible for me to live in world of no limits despite my blindness!
Walking and white cane skills came first. I’ll tell you that at times it was really terrifying. You can imagine how nervous I was to fall off the sidewalk or to walk into traffic. I spent a lot of time developing my listening skills, understanding how traffic light sequences work, and what to do at intersections with many stop signs.
I’ll never forget my instructor’s reassuring voice; in fact, I still hear the tips and instructions in my mind as I navigate sidewalks and stairs on my own.
While I’ve gained a lot of confidence, it still takes a great deal of concentration. I need to avoid talking while walking so I can keep focused on sweeping with my cane while paying attention to different signals in the environment.
At home, I learned food preparation techniques (such as cutting vegetables safely) which allow me to contribute in the kitchen. They also taught me a system to arrange my clothes by color so I can choose what to wear.
Technology has been essential to my life and success. I’ve become a full-functioning smart phone user, proficient in a variety of apps that help make my life easier.
The Centre also provided me with screen magnification software for my computer and later, a screen-reading operating system when this was no longer practical given my vision loss. This has made it possible for me to work, use the Internet, keep in touch with family and friends through e-mail, and write this letter.
People are amazed when they see how independent and self-sufficient I am. I’m really proud that I can do things myself and that I don’t need to ask for help or to be served.
My journey is ongoing, and I have lots more to learn. Recently, the motion of the cane and vibrations on the ground inflamed my arthritis, which made walking very difficult. My specialist worked on a solution that transferred the movement from my wrist to my upper arm. As I was spending more time at home during the pandemic, a therapist dropped by to train me on using the oven and how to use measuring cups to follow recipes on my own.
Your support of the MAB-Mackay has given me the tools and skills that have allowed me to enjoy a fulfilling career and raise my family. For this, I am truly grateful.
Going blind is very scary. Today, I have only 10% of my vision left, and I continue to lose a part of what’s left every year. What I can still see is very fuzzy, and even in familiar environments like my home I sometimes don’t know exactly how far the couch is, or if a chair has been moved.
But thanks to you, I know I can count on the MAB-Mackay to help me with new challenges that come my way. They’ve already helped me learn to do so many things that I never thought possible, and thankfully they'll be there for me in the future. I can’t tell you how reassuring this is.
With my heartfelt thanks,
Sheldon, 62 years old
Proud and grateful client of the MAB-Mackay