I’m excited to announce that the Epilepsy Awareness Squad has been recognized by Me to We for participating in the We Act program.
In May of 2014, I was amazed to learn that I was a finalist for the Canadian Living Me to We Awards. I was even more surprised to discover in June that I’d won the Youth In Action category!! We had to keep quiet about the award until the October issue of Canadian Living came out (boy, was that a hard secret to keep) but over the summer I did interviews with the reporter from the magazine and had a professional photo shoot!
As soon as I discovered that I’d won the award, I knew that Dan had to come with me. There was no way I would have even had a chance to win it without his support. So on October 1st, we flew to Toronto for We Day!
It was an amazing experience. Canadian Living had sent a limo to the airport to pick us up! They put us up in a hotel downtown. The only downer was that our flight was delayed so we missed the Evening of Champions dinner. We landed and went straight to the rehearsal night at the Air Canada Centre. It was surreal. We were escorted to the Green Room where there was a private chef cooking up food for the performers. We got to meet the other winners. While we were in the Green Room performers like R5 circulated in and out of the room. Then we got to go watch the rehearsal and we had a surprise. Kendrick Lamar was the secret guest performer and we were there right in time to see his rehearsal. We had to keep it a secret and not take any photos but it was pretty cool.
Then I had to go with my fellow winners onto the stage to practice accepting our awards. After that we went back to our hotel and tried to sleep, which was pretty much impossible.
We had to be up super early the next morning because I had to get to the event early as I had to go on the red carpet with the other winners. Then we ended up in a private suite to watch the show. The rest of the day went by in a blur. Being on stage, receiving my award and the after party. It was so much fun!
Dan and I still had more exciting things planned for Toronto though (it was our first trip there!). The next day we went to Ripley’s Aquarium and then to the CN Tower. And on our last morning we toured the University of Toronto’s campus. It was an amazing, once-in-a-lifetime trip.
Dan and I did so many things in 2014! I haven’t been very good at updating our website though – we were just too busy.
I’m creating a series of photo-stories to share with you about all the great opportunities we had last year. From hosting our own gala to attending the Pipeline Conference to presenting at the Canadian Student Leadership Conferences to attending We Days Toronto & Vancouver to Epilepsy Awareness Day in Disneyland to doing my first TedX Talk, it was an amazing fall. And that fall just ended an amazing year in general!
It was also pretty tough juggling school work and all that travel (and I’ve been trying to catch up every since). But we had so many amazing opportunities to talk about epilepsy with so many different people. It was really inspiring to talk to others who are dealing with epilepsy in their lives.
We also got to see a lot of new places and learn how to travel together! Don’t worry we are still best friends. 😉
We also started a new initiative in September of 2014: the Youth Empowerment Project. The goal of that group is to help other young people use their passions to make positive change in the world! You can keep up-to-date on that project at http://yepnow.org.
I hope you enjoy seeing all the amazing things we did last year. 2015 is going to be just as awesome!
Epilepsy Awareness Day at Disneyland – Nov 2014
TedX Kids BC 2014 – Nov 2014
Yesterday I attended my first We Day with Caitie and Dan in Toronto. This was Caitie’s 4th We Day and Dan’s 3rd so I’d heard about how amazing this event was for years. And it absolutely was just as inspiring as everyone had told me it would be. But yesterday was amazing for another reason: yesterday marked Caitie’s 8th week of no seizures and that is a pretty big deal!
Someone asked me when we stop counting? When does having no seizures just translate to a normal day? I don’t know. This is the longest seizure free streak Caitie’s had since she turned 10. And right now she is not taking any anti-seizure meds and she came off the Keto diet almost 2 months ago. So we are doing pretty good. No, we are doing AMAZING!
But when do we stop living with that worry that a seizure might come. As awesome as yesterday was, there were little reminders of Caitie’s epilepsy sprinkled throughout the event. I did have to tell one of the We Day producers at rehearsal that Caitie has seizures (although she is not photosensitive). I did worry when she barely slept the night before (due to excitement and a bad cold) that she would overtired on stage. Even she worried a little bit that she might have a seizure in front of 20,000 in the audience (her worst nightmare). Lightening the mood, Danny pointed out that it would be a good lesson in seizure safety if she did. And when I had to find her a seat and ask the hosts at the after party for a glass of water when we arrived because she was feeling off, we watched her closely to make sure she wasn’t going to have a seizure. After only 8 weeks, the memory of seizures is too close to ignore any of those things.
Last weekend after the kids presented at the Canadian Student Leadership Conference, Caitie burst into tears on the ride home. Worried I asked her what was wrong. She said, “I’m just so happy, Mum. Everything is so perfect right now.” Then she paused and took a deep breath before adding, “And I’m scared it will go back to how it was last year.”
And last year was bad. It truly amazes me what Caitie and Dan have done in the last 15 months given the rollercoaster ride we’ve been on with Caitie’s health. In the last year and a half she’s had 65 seizures (that we know of). And Caitie would say that’s not so much compared to some people. But trust me, it’s enough. I think their work with the Epilepsy Awareness Squad has really made all the ups and downs of this disorder a lot easier to handle. Taking the focus off oneself and shining it outward can make even the most miserable moments a bit brighter.
I hope that one day we will get to the place where we don’t need to count the number of days Caitie has been seizure free. But right now, I’m grateful for every one of those days that we do have. And for the positive attitude that makes the EA Squad so empowering!
We are super excited to be special guests at We Day Toronto this Thursday, October 2nd celebrating Caitie’s Canadian Living Me to We Youth in Action Award. Caitie will be on stage around 12:20 pm EST (that 9:20 for our West Coast friends). You can watch the live on MTV!
by Caitie Shaw
I’ve written my story before. But I’ve always focused on the positive because I believe that’s the way to moving forward. Lately, I’ve noticed that while positive attitude is awesome it’s important to acknowledge the bad stuff, too. Especially when sharing with others who are suffering from Epilepsy.
The truth is every day is not a great day. I know that’s true for everyone but it’s different for people with Epilepsy.
For me I struggle with the constant worry that I’m going to have a seizure. Especially in social situations. And as a teenager that’s really tough to deal with on a daily basis. I’ve never seen someone have a seizure but I’ve seen videos of myself having a seizure and it’s not a pretty thing. Often I stop breathing. Then, I snort. Yes, snort. It’s not at all attractive. My eyes roll back. I go stiff and then I jerk around. A lot of times I also throw up.
Can you imagine doing that with a group of teens? How would you react? How would I react?
I’ve been really lucky because almost all my seizures have been with family. My little brother still makes fun of me having them but he’s my brother and that’s what he does. He loves me (even if he doesn’t show it). But what about kids I don’t know too well? If my own brother makes fun of me, I can only imagine how some people might react. I want to believe that they would be understanding but part of me is scared they wouldn’t be.
So my coping mechanism has been to stay home when I feel like I might have seizure. This has resulted in a LOT of missed school, not to mention missed parties and social events.
But this year I decided I was going to put myself out there and try to go to as many things as I can. Because staying at home so much is pretty lonely. I like being around people my age. I don’t want to miss out on all my teen years.
Even though I’m turning over this new leaf, it’s still very hard to work up the courage to go to these things. Every time I go into a new social situation, I’m scared. I have to force myself to go out the door.
Being an Epilepsy advocate and co-running this website means I read a lot of stories from people who have Epilepsy and too often those stories are sad. They are about bullying and stigma – at school, in social situations and at work. Sometimes even in their own families. It’s heart wrenching.
Even people who get through their teen years relatively unscathed have to deal with ongoing issues related to seizures: brain damage, side effects of medication, the worry that they won’t be able to have children of their own. And I wonder if my future will also be filled with such worries.
I’ve had a lot of good happen to me through my advocacy. I’ve made life long friends, I’ve won a national youth award from Canadian Living and Me to We, this website is even a finalist for a world-wide award. But the shadow of Epilepsy affects my life every day. The challenge is to not let it win.
We are excited to announce that one of our co-founders, Caitie Shaw, has won the 2014 Canadian Living Me to We Youth in Action Award for her work with the Epilepsy Awareness Squad and SandpaperSmiles!
Thanks to everyone who voted for Caitie and special thanks to Canadian Living and Me to We for these awards. You can read all about Caitie’s award (and the winners in the other categories) in the October issue of Canadian Living.