Raising awareness, changing attitudes and removing barriers for people with disabilities in the built environment

Brenda Currey Lewis - Author

In March of 1987, Brenda was taking a few months off after having graduated high school to ponder her future. A typical, active child, her life changed dramatically when she was diagnosed with generalized dystonia (dystoniamusculorum deformans) at the age of seven years old. This rare neurological movement disorder causes muscle groups to tug and twist the body into abnormal postures. Brenda started walking on the outer edge of her right foot, and within a year she was wheelchair bound. A chance encounter with Rick Hansen during the original Man in Motion world tour changed the trajectory of her life.

Here’s an excerpt from her new book, “A Twisted Fate: My Life With Dystonia”.

I had no idea what I was going to do with my life. The thought of going on to higher education scared the life out of me. My concentration was still very poor. My mom leveled with me. I could take six months off after highschool and do nothing if that’s what I really wanted, but after that time period I had to have an idea of where I wanted to go and how to get there.

It was a wintry Sunday in March of 1987, and Rick Hansen was departing from our city on highway 16 westbound on the last leg of his world tour. He was going to be stopping at the Macdonald’s restaurant that was on his route nearest the highway. When we got there, there were so many cars and people it was near impossible to get close or even get a quick glimpse of him. Mom then suggested we drive out on the highway and pull off to the side to wave as he wheeled by. We did just that. Or so I thought.

We parked on the side of the highway, my mom took my wheelchair out of the trunk, I got in, and then all we had to do was wait. There was still snow on the ground, but it was not too cold out. Soon we could see him and his entourage approaching and picking up momentum to conquer the Rocky Mountains and get home to Vancouver. As they got nearer and nearer, my mom all of a sudden pushed me out into the middle of the highway to meet him. I was horrified! Here this incredible man was leaving Edmonton with one and a half provinces to go to complete his dream, picking up speed and I was going to interrupt that? They did not come to a complete stop, but they slowed down and all I can remember either of us saying is ‘keep on rolling.’ That was from him!  To make it more embarrassing, there was a CBC camera crew on the scene. They wanted to interview me on my thoughts of Mr. Hansen and what he meant to me. My mind was a blank, but I did say how impressed I was with him,and if people see him doing extraordinary things like touring the world with only the use of his arms, then that would reflect on me and what people could expect of me.

Later that evening we sat around the TV to watch the news. I was nervous to see myself, assuming I even made it past the cutting room floor. Well I did, but I was not happy. I am extremely grateful for having the gift of speech, but back then whenever I heard my voice on cassette tape I was always shocked because my voice seemed a lot deeper and slower than what I perceived it to be. That was the case on television too, and I went to my bedroom bawling. I hated how I sounded and even what I said. I was so embarrassed! Iwas young at that time, but now I know that most people don’t like the sound of their voice, and I apologize to those who have real trouble with their speech.

The day before Rick was to arrive back in Vancouver — to much celebration and fanfare — the reporter who interviewed me on that traumatic day not long before called to ask if she could come over the next day, watch Rick’s live celebration on TV with me, and get my reactions and thoughts throughout the broadcast. I had gotten over the trauma of the earlier highway interview, so nervously I said yes.

CBC arrived before the broadcast started, and it was at least an hour until Rick made it to the finish line and cut the yellow ribbon in front of throngs of fans and supporters. I too was a fan and supporter of his efforts. (As the leader of the Dystonia Support Group a few years later, I learned that you have to do extraordinary things to create awareness and get research funds.) The pressure to feel inspired and say something meaningful was strong. What I did say, at my mother's earlier suggestion, was that he had inspired me to think seriously about moving out and becoming more independent. Also, what I thought to be quite cheesy at the time, I exclaimed, “Now I feel like I could climb a mountain!”

Brenda Currey Lewis has lived with generalized dystonia since 1974, when she was seven years old. With her mom's unwavering advocacy, she has navigated the unchartered waters of this baffling disorder. Brenda moved out on her own later that year after meeting Rick and later became the president ofthe Edmonton Dystonia Support Group for twelve years. She is still involved inraising funds and lending guidance to newly-diagnosed dystonia patients. She wrote A Twisted Fate to raise awareness about dystonia, and she looks forward to the day that medical researchers find a cure for this unwelcome intruder.

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