Zoe: I was diagnosed with Epilepsy right before my 18th birthday
Updated: Jul 3, 2021
I met Zoe last year at an art community in Los Angeles.
We only met a few times and added each other on social media. In November of this year, I saw her post that celebrated her making it 1 year and 5 month seizure-free.
I soon reached out to her, who's already back in Australia, and learned about her story.
Interviewer & Editor: Nox
November is Epilepsy Awareness Month. I usually write a post every time that comes around.
Usually I'm not seizure-free, but this year at this point, I'm one year and five month seizure free. I'm starting to live a normal life.
So I just thought to post that - I don't know how many people it reaches and who it reaches, but if anyone has epilepsy and it reaches them - and say that it is possible to overcome, to overcome it somewhat.
I want to encourage people to read up about it, to research it.
People think it's like one thing, but there's so many different types of epilepsy and many different ways that people can have seizures.
My main seizures are the kind that people can visibly see, like full body convulsions, which is basically what I had the first day moving into the art community.
It was mainly because I was so exhausted and I haven't slept properly. But because I've had them for so long, I know how to look after myself. I don't necessarily need to go to the hospital unless the seizure goes on for a lot longer than a minute or a minute and a half.
So when I first got to the art community, I had a seizure. People called an ambulance for me. But the health care you guys have here in America is crazy. So I just told the medical people that I don't need to go to the hospital if it's not like going on for more than 10 minutes. So they finally let me go.
(Zoe on a film set)
I usually can tell when my seizures are coming on.
My seizures are kind of like déjà vu, and then everything just goes in this weird echoing sound, and all the noises feel very distant. Then I'll have a seizure, like the full body convulsions.
The aftermath is the worst because I feel like I've just run a marathon because my muscles just spasm and contract, just working so hard and using my whole body to push me there. When I wake up and I feel like it's days after.
When I come out of it, sometimes I can vomit or just have a really bad headache. Then my mood is just down because the feeling is not good at all.
If I'm anywhere that I don't feel safe, or if I don't have somewhere to land or not to be in the correct position to have the seizure, then it's super dangerous.
So there's this full body convulsion. And then there's some seizures that you don’t even see. Some people go into a day and have a seizure, and they wouldn't even know. There's also people who just black out for two seconds and then come back like just daydreaming or stuff like that. Or you could have ticks that can also be counted as seizures.
My epilepsy is mild so I don't deal with it everyday, which I'm so thankful for.
I didn't know my diagnosis until I was almost 18.
My first seizure was probably when I was 13 and I had to live on for five years without having anyone officially tell me what it is. They just thought it was hormonal and would go away because some kids have it during their teen years and then they grow out of it. By the time they're 18, they don't have one again.
But unfortunately, for me, that wasn't the case.
It was literally three weeks before my 18th birthday, they did a test and found an abnormality in the brain waves. So they told me that sleep-deprivation is not good. If I mix that with too much alcohol then pretty much it's gonna trigger it.
So I have to have 10 hours' sleep a day and I can't take overnight jobs. I have to maintain a certain lifestyle to make sure that I'm not pushing it too far to have a seizure.
(Zoe on a film set)
It doesn't discriminate because it can affect anyone.
You can just be living a normal life and one day you have a seizure, and then you're probably gonna be diagnosed with it. You can also have a concussion and then be diagnosed with epilepsy.
It affects everyone and disturbs many people. It's a difficult kind of disability to talk about as well because people just associate disability with the visual of what they can see, but they don't associate epilepsy with that because it's invisible and no one can see it unless it happens.
I haven't met anyone else who has epilepsy yet - that's the hardest thing to reveal. I've never met anyone that's ever said it. I think people just like to keep it to themselves and feel like it's not a worth enough thing to say because you can only see it when it's happening.
But there's been people that I never knew had seizures message me no social media, telling me they have seizures too.
I guess people just don't like talking about it and it's just not visible.
Even when I got diagnosed officially, I still didn't know much about the disability because no one really speaks about it. You can't find out about it from anyone unless you're in research.
When I was diagnosed at about 18, there were so many things with that too. It was just before my 18th birthday party.
In Australia, 18th birthday is like everything because we can do everything then: we can drive, we can drink and do other stuff. So it's pretty full on.
I was in a little bit of denial because I just wanted to do what everyone else was doing, like going to parties and all that.
And I did it, from 18, 19, 20, to at least 22.
Then I started realizing that people were actually dying from it. That's when I started to pay attention and make sure that I wasn't going too far with alcohol and other stuff.
But I guess when you're younger and people see you as someone that can party and drink, then it's hard to say, "Look, I don't wanna do that any more," or "I don't wanna drink."
It's like battling with yourself because you would think, "Am I gonna be fun?"
So for a long while, it was like that. But I just kind of brush it off and think "What's the worst that can do to me?" So there were several times I was just like "I'm just not gonna do this anymore."
Now being 25, I barely even drink. If I drink, I would do it in very far apart times.
I think before I was just mainly rebelling against the thing because I didn't want to have it. I was a little immature to not really know much about it. But as you grow older, you find out all these things and think it's not really worth it.
It's like I have friends in my life now that understand it and I don't need to prove to anyone that I can hold a drink down or I can be the life of the party.
I can have fun without alcohol.
But I totally get how hard it can be on some people.
Some people have them everyday or some have them every two weeks. It's hard. It takes a toll on your life.
Because it'll always be in the back of your mind. For me, I haven't had one for a year and five months now but in the back of my mind, it's always gonna be there.
I try not to let it get me down and then try to inspire other people with what's helped me.
My parents were dealing with it for a while. So they knew what it was before I was diagnosed and they just have to wait for the official word. But I've never actually really asked them. I guess it's very confronting because it's not an imagine you wanna see your child at any point in their lives.
I think they are used to it now. But at the beginning, it was very hard for them. Now that I'm older and I've got a better handle on it, they trust me a lot more with me being able to look after myself and make sure I'm doing all the right things.
So when I moved to LA, my family was a little less worried because they knew I had friends over there, and they were mainly excited for me because it gave me that independence that I lack in some other areas like I can't drive and do some other stuff.
So when I came to LA the first day and had a seizure, my mom knew that I had people there that she trusted would help me out. So my mom was worried but she wasn't like "I'm gonna get on the plane and come over." It was more like, "You're gonna be okay. Just take a good rest."
After I finished university, I got an opportunity to have a visa for a year to live and work in Los Angeles. I studied film in university so I came over to Los Angeles to see what I could do in the film industry, to experience it.
Living in LA was awesome but at the same time also super challenging because in terms of pay, rents, and other stuff, it was so different to Australia. When my roommate left in December without giving me any warning and left me short on rent, I had to work two jobs with no breaks really. Even when my friends flew here to see me, I had to make up with some excuses to take leave from work.
When you live there, you realized what it's actually really like to life here - it's not all the glamorous stuff.
There's some tough times that I went through over there and I just thought, do I really like this place or just because of what my dream career is?
Acting is my first passion and that will never die. I would love to be a part of a cast one day. My passion for film production started at the end of my high school.
They just both give me different things. Acting is like that adrenaline rush and excitement of playing characters and performing. Production is like being in control of where your career goes.
My stay in LA got cut short because of coronavirus and I had to come back home in Australia. Then I kind of realized that this is where I eventually want to be. Because it's the epicenter of the film industry. It's where my career is.
I will never give up putting myself back there. But I also hope that next time I go, I will be in a better situation. I don't need to work two jobs and 14 days straight.
I'm actually glad I came home and I'm, in a way, glad that coronavirus happened. Because it allowed me to really focus on myself, especially mentally.
I was not prioritizing what I was meant to do. I kept saying it's because I'm working so many hours, but it was just all that I was fearful and didn't want to commit myself because what if it didn't work out.
I'm in such a great spot at the moment.
I'm finally not feeling insecure.
Sometimes I still question myself a little bit as in the choices I make when I'm doing scripts, but it's not coming from a place like "Everyone's better than me." It's more like I'm good in my own way. I believe in myself enough to make my own success. There's so many ways to be discovered. I don't have to wait.
I'm hoping next time I go, I'll have more on my resume so that I could have more opportunities in the film industry.
But honestly, I don't think I can predict anything any more. The way the world is right now, everyone's just kind of taking day by day and week by week, just seeing what happens.
But it will be better next time.
I think it will be A LOT better and more exciting next time.
- END -