My name is Isabel, but everyone calls me Isa. As long as I can remember all I ever wanted to do was dance dance dance. I dreamed about being a professional dancer no matter what. I never thought that something could stop me from me achieving my dream. Until it happened. January 2013: I woke up early to catch my flight back to Toronto, got in the shower and everything stopped. A few moments later I opened my eyes. I was in bed, surrounded by my parents and paramedics. I have had my first tonic-clonic seizure. From that moment on, everything changed. Except one thing: my love and passion for dance and my desire to continue doing it for the rest of my life.
I live in Toronto but I’m originally from Guatemala City, Guatemala; I am a full on “Chapina” and can’t never resist a good cup of Guatemalan coffee, “frijolitos” (refried beans) and Latin music. I’ve always been blessed to have the support of my family and friends. With the right support system and a lot of hard work I was able to get funding and move away to Toronto to study dance. I began my studies at York University in 2010 and was on the path to getting a Bachelor in Fine Arts with specialization in dance. My heart and soul where bursting with happiness and excitement. I was living it, this was it! This was the dream. I was so focused and motivated by everything I was learning. All the people and artists I was meeting. It was incredible. It was hard being away from my family and it still is. The feeling of “homesick” never truly goes away, you just kinda get used to it. Although I missed my home in Guatemala, the focus and love for what I was doing kept me going. Every day was amazing and every day I was becoming a better dancer.
The year 2012: I was in my 3rd year of university and was selected to be part of the dance program’s pre-professional company. Another dream come true! This was an opportunity to learn, grow and fall in love with dance even more. At this point, I was actively dancing about 8 hours every day, plus keeping up with academic work and a personal life. A few days after New Year’s, January 2013, I had my first seizure while visiting my parents in Guatemala. It happened the morning I was going to come back to Toronto. I was in the shower and all the sudden I wasn’t. I had a “grand-mal seizure” or also known as “tonic-clonic”. The doctors said I was just dehydrated and needed to rest (which was probably true) but never said anything about epilepsy. A few weeks later it happened again. Now I was back in Toronto and had another seizure in the shower. My roommate found me and was able to help me and console me. I give thanks to her being there and to the fact that I didn’t lock the bathroom door. Phew! Even though I didn’t remember anything I knew what had happened. You see, my mom has epilepsy so I guess a part of me knew that I probably had it too and that’s what was causing the seizures.
After 3 years of NEVER missing a dance class in university, once this second seizure happened I couldn’t go to class and I was emotionally devastated. One of my teachers encouraged me to go see a neurologist and so I did. I had epilepsy and was diagnosed with “myoclonic seizures” that can turn into “tonic clonic”. I wasn’t too upset about the news of having epilepsy, perhaps because I learned how to deal with the idea of it since I was little because of my mom. The most upsetting and sad part was that I couldn’t dance.
I began to take medication and felt good at first, but the moment I started dance class and began to do plies at the barre, my body would just start twitching and began having small myoclonic seizures. I was afraid. I din’t want them to turn into a tonic-clonic seizure. The worst feeling was having to sit out of dance class and WATCH. Ugh! No dancer wants to watch dance class! We want to dance dance class! I was in tears every time and I didn’t know why this was happening. I talked to my doctor and he switched my medication. No good! This second medication was clearly not working for my body. The nausea, tiredness, tremors, head aches. Ah! It was horrible.
All of this was happening with my health: seizures, medications, stress, fear, trying to get enough sleep… And at the same time, I still had to go to class, go to rehearsals, finish papers, study. All I could think about was HOW AM I SUPPOSE TO FINISH MY DEGREE IN DANCE, WHEN I CAN’T DANCE!? My dream, my world and my plans had turned upside down and I had no idea what to do.
After a lot of trial and error with medications, my doctor finally found the right one for me. I was so relieved! I remember the day I was able to return to dance class and rehearsals and felt such an accomplishment when I was able to do a whole run-through of the piece or get through a whole ballet class. I completed my 3rd year of university and performed in the company’s show, with my parents and brother in the audience who came from Guatemala to see me. It was the best feeling ever!
It is now the end of summer 2013 and the start of my final year at undergrad school is approaching. I was ready! I was strong and ready to dance my heart out and be part of the university’s company one more time. “Hold on Isa!” – said the universe. I had a tonic-clonic seizure during a ballet class at a downtown studio in Toronto. What was happening?! My medication was working and all summer I had been fine. I decided it was time to get ahead of the game and find ways to understand my body and take control of what I could. My medication changed AGAIN. This time, at least there were no side effects.
I decided to a research project as my senior thesis based on epilepsy and dance. I kept thinking about all the amazing athletes and dancers that exist in this world and thought “THERE HAS TO BE SOMEONE WITH EPILEPSY OUT THERE”. Someone who is very physically active and has a career in a sport or in dance. I wanted to learn more about epilepsy and seizures. That’s the trick with things that are difficult; we have to understand them first in order to resolve them.
I read a lot of scientific things about epilepsy and also a lot of different stories of people having seizures and how this affected them psychologically and emotionally. I interviewed a professional dancer and a musician; both living with epilepsy who were brave enough to share their stories with me. It was a relief knowing that I wasn’t alone. This research lead me to connect with organizations like Epilepsy Toronto that do such wonderful work for people living with epilepsy. They provided me with great resources and advice for my research project.
The most important aspect of my research project was something I call “My Health Journal”. I began to keep track of what my body was feeling, what I was doing, eating and feeling. If I had a twitch or small jerk I recorded it and then went back to the journal and was able to see similarities in other days where I had a small episode and caught what had triggered it. Epilepsy was no longer controlling me, I WAS CONTROLLING ME. I discussed my situation and epilepsy and realized that just talking about it made me feel better. I even encouraged my mom to talk more about her own experiences.
That year has been one of the best ones yet. Not only was I doing this incredible research and learning so much about my body but I was also dancing a lot! And because I understood and listened to my body, I was dancing better than ever. I finished university and graduated cum laude with a Bachelor in Fine Arts in Dance. It’s been 8 years since I finished school and 8 years of being seizure free.
I continue to take my medication at the same time every day (very important!) and continue my health journal. The past few months I have been focusing a lot more on the mental and emotional side of how epilepsy affects me. When I was diagnosed all those years ago, I was so focused on getting the physical aspect under control that I forgot about the mental one. The pandemic hit all the spots that where weak but I am grateful that I have people in my life that support me, love me and teach me. I have all the right tools to stay strong and healthy. Not just physically but mentally and spiritually.
I have never been quiet about having epilepsy. I have always shared my story and how I feel about it. There’s still so much taboo and fear around epilepsy I can’t believe it. Let’s talk about it. Let’s learn about it. I encourage everyone to start their own health journal. I use an excel sheet but there are many apps you can use as well. Just search for “epilepsy diary or journal” and you can choose the one you like. It will be extremely useful. Medications and doctor recommendations are also crucial, however it is important to remember that we are all different and our bodies have specific needs. It’s just a matter of finding them. Sleep, sleep, sleep. Not just more hours but quality hours. If you could only see my bed time ritual and how particular I am about about my sleep environment. My husband is a patient man!
If you have a dream and passion, go for it. Things may change and you may have to make alternate arrangements for a while, adjust a few things… but it can be done. My plans and the life style that I had imagined as a professional dancer changed when I was faced with epilepsy but I didn’t give up. I feel like I have so much power to do so many different things in dance now because I understand what I need so much better.
I’m also better able to decide what jobs to take as a professional dancer because I am not willing to sacrifice my health over something or someone who doesn’t value me as a person or as an artist.
Since I graduated university, I have performed as a professional dancer in several projects and shows. One of them was the PanAm Games held in Toronto in 2015. I got to be the face of Guatemala in a photo exhibit for those games. I teach kids, teens and adults. I have been invited to teach workshops abroad. I dance and collaborate with cool artists all the time. I work full time in a dance studio where I teach and run the operations. I started learning pilates this year. I got married in Guatemala with wonderful friends and family. I have so many new dreams and goals in my mind that I am working to achieve. I continue to learn about myself and others that cross my path. I AM A DANCER AND I AM LIVING WITH EPILEPSY.
For anyone out there struggling: you are not alone. Be patient with yourself and take control of the things you can. The rest will follow with time.
The Canadian Epilepsy Alliance/ Alliance Canadienne del’Epilepssie is a Canada-wide network of organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families. We achieve this through the provision of support services, information, education, and public awareness.
