Tristan’s Story
In March 2018 I had my first seizure at home while studying for a midterm I had the next day (this was my first year of university). I don’t remember much from the evening except for a few small moments in between a lot of sleeping. When the EMT told me I had a seizure all I remember saying is “what?” but I was still too out of it to let that sink in. After many tests, the doctor said everything was fine and it seemed as though it was a one off seizure which I learned was very common for university students, but I would still need to see a neurologist. A few days later I saw a neurologist who booked me for an EEG and an MRI. I was told that if I didn’t hear anything from him that was good news but he would check back in in 3 months. 3 months went by and my mom and I had heard no news so we went to the follow up appointment excited for me to be told I could drive again. This was not the news we received. At this appointment I was told I had Juvenile Myoclonic Epilepsy (JME), that I would be put on medication and my driving wait period would be extended by 3 more months. My initial reaction was pure shock, and of course sadness.. I had no idea what it meant for me and my life.
My day to day life has changed quite a bit, integrating taking medication twice a day at the same time 12 hours apart was a big change. Although that change was big, the most significant one for me was driving. I am a very independent person and going from being able to rely on myself and my own schedule I had to break down some walls and let people help me get to where I needed to go. It took a few periods of not driving for me to really adjust. I also take a lot more time for what my mental health needs now as stress and sleep are two big triggers to my seizures. If I feel myself getting stressed I have to take precautions and make sure my schedule has some time for me to relax, and if I am too busy then my quality of sleep may suffer as well. This was a big adjustment for me as I was always such a busy person growing up, I don’t think I ever stopped. I went from school, home for food then either straight to dance or work. When I was even younger I had even more sports integrated into that and I am honestly shocked that I didn’t have a seizure earlier on in my life between the business and all nighters for homework and assignments. For that, I am very grateful.
I had to make a lot of life changes in the past year especially (three years being diagnosed). I realized that I couldn’t do everything like I wanted to. I was in MOD, a contemporary dance group at my university, was working 2 jobs one being retail and one being teaching dance, I was dancing at my dance studio, volunteering at my church and trying to handle school and a social life. I came to some tough conclusions… I stopped doing MOD, I take part in less volunteering, I work a maximum of 2 shifts at work and I work one night teaching dance, and the rest of the time is spent on school and making time for the things that are important like my family, friends, boyfriend, and myself.
For a long time I feared having another seizure and while it's hard to let go of that fear, I am finally starting to. I am Christian and I have always believed that everything happens for a reason and I made the choice to believe that this is not something I will never have complete control over. I can take my medication on time twice a day and minimize stressors and keep track of my sleeping and eating habits but at the end of the day I could still have a seizure. So instead of being fearful of that, I do what I can and I let God take care of the rest. I am at an age where there are a lot of unknowns surrounding future childbirth and again, I could sit and worry all day every day but that would make my health worse. So instead I try to live day to day, and take things one step at a time.
When I had my first seizure a lot of people came to visit me and make sure I was okay but once I was actually diagnosed with epilepsy a few months later I felt as though a lot of my friends stopped asking me to hang out. Personally I didn’t know if it was the inconvenience of me not driving or fear of not knowing when I could have another seizure (or completely unrelated reasons), but as I’ve been open about my diagnosis and learned more about it myself I’ve been able to reunite with a lot of those people and start to break down the stigma around epilepsy!
I hope that I live a full and happy life despite any disorder. But, I also hope that one day there is acure for epilepsy. Not just for me, but for all of the people who live with epilepsy every day. Epilepsy is an everyday struggle for so many people and I pray that one day, that struggle can be removed.
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