Mediaplanet Can you share with us how you came to be diagnosed with Retinitis Pigmentosa?

Victoria Nolan I was born with my eye disease, but I lost my sight very slowly. It was so slow that I didn’t know I had the eye disease until I was 18 years old. By that point my family and I had realized that my night vision was not the same as other people. I had always been considered “clumsy” but after receiving the diagnosis and looking back, all the accidents I had were put in perspective.

We were shocked when I was given the diagnosis; no one in my family has eye disease. We were also told that there was no cure for this eye disease, which really hit my parents hard.

MP What is Retinitis Pigmentosa? Can it be treated?

VN Retinitis Pigmentosa is a disease in which the patient’s retinal cells start to die. Typically, the rods are the first cells to die. These are the cells responsible for peripheral and night vision. Over time as more rods die, the cones are also affected. These are the cells that are responsible for central and colour vision. The disease can eventually progress to total blindness.

When I was diagnosed at 18 years old I had already lost 90 percent of my sight. I was amazing that I was still functioning as a “sighted” person. I am now at the point where I have lost about 97 percent so there isn’t much useable sight left. There are no treatments or cures presently, although there are many studies that are promising for the near future.

MP How did you get into adaptive rowing and why was that something you decided to pursue?

VN My eye disease accelerated when I was pregnant. After having two children I had lost a lot of sight in a relatively short period of time and also had two babies to look after. I really struggled at this time, I felt like a failure as a parent as well as in my career. I was afraid to leave my house.

This lasted for a couple of years, but as my children got older I realized they were growing up seeing me as someone who was afraid and who couldn’t do things. I wanted to change that so I started looking for an activity that I would love enough to force me to get out of the house and be independent. Rowing was that activity. I loved it! It allowed me to move fast and be graceful without worrying about bumping into things or getting hurt.

"If you have vision impairment I would strongly recommend trying a competitive sport."

I was encouraged to try competitive rowing on the club’s adaptive rowing team and I agreed to give it a try. It turned out I loved competing! I had no idea I was a competitive person, sports had never been part of my life growing up. I loved it so much that I trained wherever I could. I got stronger, and faster and in 2007 made Canada’s National Rowing Team.

MP What advice do you have to others who wish to pursue a competitive sport and suffer from vision impairment?

VN If you have vision impairment I would strongly recommend trying a competitive sport. For me, I loved the chance to be able to push my limits and see what I am capable of. In my everyday life I feel like I am constantly being held back – being cautions, being slow and conservative. In adaptive sport you are given the support you need to push yourself in a way that can’t happen in everyday life. It’s exhilarating and empowering and you will be amazed how much it improves your life from your mental health, to physical health, and to confidence.

MP How did you train to be able to compete professionally and not be hindered by your vision impairment?

VN The thing I love about para-sport is you will never hear that you can’t do something. Coaches, fellow athletes, support staff, everyone works together to problem solve and find a way that you can excel. When I couldn’t read the screen on a rowing machine, someone would stand behind me and read out the numbers I needed. When I was learning to row and couldn’t keep time with everyone in the boat, they moved me to the front so that everyone was following me.

Once I learned how to row, then I was able to move to other seats and learned how to follow the rhythm by feel. There is always a way to do things, it may take time and research but there is always a way.

I also think that the most important skill I brought to competitive rowing was my mental discipline and I believe this comes from dealing with vision loss. The strength and courage it takes to navigate the world without sight requires a state of mind that works really well in disciplined training.

MP What was the highlight of your rowing career?

VN In 2010 my team and I broke the world record and won the World Rowing Championships in Karapiro, New Zealand. Being on the podium and hearing ‘O’Canada’ was one of my proudest moments. The one that tops it is following that achievement; my son walked into his grade two class and got a standing ovation because his mom was a world champion. I got into rowing to make my children proud of me – mission accomplished.

MP What was the most difficult obstacle to overcome during this experience?

VN There is a long list of extremely challenging obstacles that led up to this accomplishment. The training itself was grueling. I was away from my family for weeks at a time to train. But the biggest challenge was when I was leaving for the competition I flew, with my guide dog, to Vancouver to make the connection to New Zealand. While I was waiting a call came from Biosecurity in New Zealand that they were not going to admit my guide dog into the country.

It was devastating; my guide dog is more than my eyes and much more than a pet. And I knew I had to focus on the competition ahead. I ended up using all the emotion around this event to fuel me through the race – I thought if I could win a medal that would make it somehow better. When the race got tough, I drew on those feelings of frustration and anger.

MP I understand that you are a special education teacher. Did you find it difficult to break into the workforce? Is there a particular reason you choose this profession? 

VN I had wanted to teach since I was five years old. When I got my diagnosis, it didn’t stop me from continuing towards that goal. I have always found ways to manage the difficulties this disease presents, so when I first started teaching I was able to do it without accommodations. As the disease worsened the school board provided me with the technology and support I needed to do my job.

MP What's something that most people don’t know about Retinitis Pigmentosa (RP), and what is something you wish more people understood more about having a vision disability?

VN I wish that people understood that when you have vision loss, you don’t necessarily look like you have vision loss. My eyes have no noticeable difference to other people’s eyes. In fact, it can look like I’m looking someone in the eye when in reality I only see a blur in front of me.

Something about RP that is hard to understand is that the patient doesn’t see blackness around the piece that they can see. If it was like a tunnel (black with a small circle of sight in the middle) we would know how much we are missing. Instead, all we see is that little circle, nothing else. This really confuses your sense of reality.

MP What's next for you?

VN I have retired from rowing, but I am now pursuing tandem cycling. This is a Paralympic sport. I am riding with Sarah Bonikowsky-Chaudhery who was an Olympic rower. We both retired at the same time and decided to try riding a tandem together. She obviously sits at the front of the bike since she can see and I am on the back.

We just won two bronze medals this past weekend at the Defi Sportif competition in Montreal in 2 road races. I am continuing to teach, focusing on raising awareness about disability and accessibility as well as doing motivational speaking about overcoming challenges, being world class and teamwork.