Christmas is such a wonderful time of year. And the holiday has extra meaning for me.
I’m one of eleven children. A big, happy family. And in such a big family, our passions and abilities are a way to stand out.
In my family, I have always been the reader.
An early reader. When I was just three years old, my brother used to carry me in his arms as we wandered around our village so I could read things for people who never learned how, or who could no longer see. I’d read the newspaper, books, and important letters.
I’ll tell you a secret – my brother charged people 25 cents. And he didn’t give me a penny!
When I started school, I was really looking forward to lots of reading. But in the first week, as I joined my new friends playing jump rope, something unexpected happened. I discovered I couldn’t skip. Instead, I was jumping up and down like a frog.
It was odd. But other than that, everything seemed normal. And before long, my family moved from Guyana to Canada and settled in Toronto.
Fast forward to my early twenties. While I was on a sailing trip with some friends, I noticed a guy in a wheelchair being helped onto a boat. I told my friends that I didn’t know how I’d cope if that happened to me. They just laughed and said, “Nora, you would just boss everyone around!”
It wasn’t long after this that my life began to change. I started having more and more difficulty doing normal things, like climbing hills and stairs. Then I started falling for no reason.
Just before Christmas 1988, a neurologist diagnosed “inclusion body myositis,” which is an inflammatory muscle disease.
That night, I cried myself to sleep.
By the next morning, I started thinking: well, this isn’t going to go away. And that as someone who is fiercely independent, I would have real difficulty with becoming more and more dependent on others. I would have to find a way to both accept this fact and protect my dignity.
Two things made this possible.
One was discovering LOFT. By chance, someone mentioned LOFT to me.
And LOFT invited me to live in one of their properties, the J.W. Green apartments. My one-bedroom flat has been my home for 26 years. And I couldn’t be happier.
The building is clean and well maintained. We have a beautiful backyard. And the residents have become a kind of extended family – we do things together, including celebrating Diwali in the fall.
When I first moved in, I used a walker. As you can see, I am now in a wheelchair. And I have to tell you: as my condition progressed, the LOFT workers have been amazing. They always make time for me, and ensure I have what I need – like the electric opener for my front door. Mine broke and I was worried about how I would replace it because they’re expensive. And LOFT came through.
I said two things helped me adjust to my new life.
The second was my family. My wonderfully loving – and very large – family.
We forget that it’s not just the disabled person who has to come to terms with this change. Disability has an impact on the entire family.
When they came to visit me in my LOFT apartment, and saw that I was happy, they were happy, and relieved to know that I would be safe and cared for throughout my life. And as they relaxed, so did I.
This Christmas, 31 years after my diagnosis, I’m thinking about the family I was born into, and the family I’ve created thanks to LOFT. Because of LOFT I am also able to be a contributing member of society and my community.
All of you are part of the LOFT family. And your generosity helps people like me live with dignity.
For this, I thank you from the bottom of my heart.