WINDSOR, N.S. — You might recognize Savannah Sullivan for her role as the 2017 Princess Windsor in the Apple Blossom Festival, but she’s much more than a young woman in a white gown.
Sullivan, now in her final year of university studying tourism, is looking ahead to the future as she opens up about dealing with neurological disorders.
“OK, I’m 21, my favourite colour is purple, I work here at Pisiquid Canoe Club, I’m Princess Windsor and I have narcolepsy. I was diagnosed when I was 16. Actually, I was diagnosed with cataplexy first and then narcolepsy came along with that. It’s a sleep disorder; my brain can’t regulate when it’s appropriate to go to sleep or not. Falling asleep in class was a thing. And cataplexy is the sudden loss of muscle tone with certain emotions — so if I laugh really hard, I’ll literally be on the floor laughing.”
“It’s actually impacted me for the better I think. A couple things have been tough. My first year of university was hard, trying to deal with being away from my family and dealing with narcolepsy, trying to manage it on my own. It affected a lot of my courses and I didn’t do as well as I had hoped. I actually dropped out, went to NSCC, did tourism there, travelling back and forth from home. That helped a lot with my grades. I graduated from that program and went back to the Mount, which is where I am this year and where I’ve had a couple of years of practising, managing it, knowing that when I need to take a nap, need to study, need to motivate myself. It’s a lot easier.”
“I’ve talked about it in front of some psychology students. I’m definitely not ashamed of it or anything like that. A lot of people, when you say narcolepsy, they associate it with epilepsy, but it’s nothing like that. I’ve never had anybody make fun of me for having narcolepsy, but sometimes people enjoy watching me have a cataplexy attack. I don’t find it offensive, I find it kind of funny as well, but they don’t really understand that I can’t respond during them. When I was younger, before I was diagnosed, I’d be sitting in math class and my friend would tell me a hilarious joke. Everything’s funnier in math class because it’s not math. I’d kind of fall forward a little bit, my face would droop and my smile would drop, and I thought it was normal. People fall to the ground laughing all the time. It didn’t strike me as odd until I couldn’t lift my arms up, it only lasted for about 20 seconds.”
“My nan took me to the doctor because I was sleeping so much, more than the average teenager would and my doctor didn’t tell us what he thought it was. He recommended us to a seizure doctor and within 30 minutes of our appointment he diagnosed me. It was pretty obvious to them that this is what was going on. When I was first diagnosed, I was kind of ashamed of it, I didn’t want people to know that there was something different with me. I’ve grown into it, I’ve embraced it. I let it help me in life decisions. I had always wanted to be a doctor, but with narcolepsy it’s almost impossible. It made me re-evaluate what I wanted to do with my life, it lead me to coaching. I was in training for the next race, next regatta, but cataplexy impacts you on the line and I had to drop out of sport, but I realized I had a huge passion for teaching and coaching the younger athletes, showing them how to do it, watching them win their first race. It’s been good.”
Faces Friday is the Hants Journal’s weekly online feature highlighting members of our community: their strengths, challenges and humanity.