I Have EPILEPSY. Here’s How I Live With It.


Hi everyone, I hope you’re all well. So, today’s video is going to be a
little bit different from usual, in a good way, that is. I want to tell you
all a story, and I want to raise some awareness for something that is
very very important. But before I do that, and while I have your
attention, pretty please hit that subscribe button if you haven’t
already. I would love to his 100K subscribers by June,
we’re nearly there, we’re getting close, so if you watch
my videos and like them but haven’t yet subscribed, I would love
it if you subscribed today, that would make me very happy! Okay, here we go. So, last weekend, I came back to Australia
after 10 days in New Zealand, where I was hosting a charity bike
race, not riding, just hosting, called the Tour of New Zealand, like
the Tour de France. It
was an eight day race from the south island to the north island with
about 160 riders, all raising money for seven different charities. Now,
while I was there, I obviously met some amazing people with some
incredible stories. The whole experience was a big perspective
changer for me, understandably. And it got me thinking; I have this platform. And it’s a great platform,
and I’m incredibly grateful for it. I use it to speak about things that
are important to me and to other people in terms of what’s going on
in the world, and I love doing that. But today, I’m going to use it for
something a little bit different. I am going to tell my story, which is
also the story of tens of millions of people around the world. And
that is the story of people living with epilepsy. So what is epilepsy exactly? Well, a quick summation; epilepsy is a
neurological disorder characterised by frequent or semi-frequent seizures. These seizures, or fits, are caused by a disruption
of the electrical activity in the brain, which causes
things to speed up, rather than slow down. Sometimes fits cause convulsions and a loss
of consciousness; this is called a grand mal. Others are smaller, and can last only a few
seconds, and involve feeling a faintness or dizziness. These are called
absence seizures, or petit mals. I have epilepsy. I was not born with the condition; it manifested
itself when I was eleven, nobody is quite sure how
it happened since I do not have a family history of it, although
doctors have a number of theories. There are different forms of epilepsy; mine
is temporal lobe epilepsy, which means it sits here on my left
temporal lobe. I am very very lucky in the fact that my condition
is very well managed by medication and also diet; I have
not had a grand mal since I was about 13, and I very very rarely
have absence seizures. However, this was not always the case. When I was 11, I was normal, healthy, active
kid. All, of a sudden,
and I remember this vividly, I started having these really kinda weird
sensations in my head. It would come completely out of nowhere,
and the best way I can describe it is that it was like looking through
the wrong end of a telescope, while the thoughts running through
my head suddenly sped up and span around and around, and it
would last anywhere from a few seconds to maybe a minute. As an 11 year old kid, I had no idea what
any of that meant. And
since the feelings weren’t actually frightening, or painful, I didn’t tell
anyone about them. I would now, as an adult, but as a child,
you just don’t worry about those things. Unless you’re like a genius child who
understands neurology. Pretty soon I had my first grand mal. I remember it very clearly. I was
in a music class, and I suddenly started having the weird feeling, and
threw up all over the floor. A couple of my friends helped me up to
take me to the nurse’s office, and from that moment, I just
remember black. It was just like going to sleep. Obviously, I wasn’t asleep, I was having
a major epileptic fit. Next
thing I remember was waking up with the mama bear of all
headaches, my parents were there, a few teachers were there, I
think some ambulance officers, all these adults looking really really
worried, and I just remember as a kid not being frightened, but just
thinking, through my horrible headache, “What the heck is going
on?!” Anyway, from there, obviously I went to hospital,
had a bunch of tests, had some laughing gas, which was interesting
because while I was on it, all I did was sing Christmas carols
very loudly and in a very high pitch I should reiterate here, I was perfectly fine,
I mean I felt like crap but ultimately I was getting a day off school. It was my poor parents who
were going through hell, I mean to this day I can’t imagine what
would have been going through their heads, I’m just so sorry for
them and so sorry that it happened and that it was so scary. Long story short, after all my tests and discussions
with doctors, where I finally revealed that I’d been having
these weird feelings, they worked out it was, in fact, epilepsy. Thankfully, not severe
epilepsy, and not debilitating. They even thought there was a chance
I could grow out of it by the time I was 16. I didn’t, but that’s okay. What followed were a number of years of trying
out medications, changing medications, combining medications,
trying desperately to see what worked, what would control the seizures
the best. Now this
was really not fun, especially while going through puberty. There was a lot of weight gain, I got bullied
a lot, I had absence seizures at school which meant for several
minutes afterwards I couldn’t understand what people were saying
to me while my brain recovered. So needless to say, narky teenage girls didn’t
take kindly to any of that out of the ordinary behaviour. I developed a bit of an
eating disorder because of the weight gain, it wasn’t a fun time. But, you know, I have the world’s most incredible,
wonderfully supportive parents, and they got me through
the whole thing. Finally, doctors found the right medication,
and we got the dosage right, when I was about 16. I am still on that medication today, the
brand name is Lamictal, and I do not intend to change it. So now? How do I take care of myself? Well, obviously I don’t drive;
some epileptics do, that’s their business. I don’t, I don’t want to risk
it. I don’t drink at all because it messes with
the medication I’m on, and I try my very best to get enough sleep
every night because tiredness can trigger seizures. I avoid things like flashing lights, I
never swim alone, and I don’t take baths, because the last thing you
want is to lose consciousness in a bathtub full of water. I do shower
every day though, for the record. Other than that, my epilepsy doesn’t affect
my life really at all. It’s
well under control, I have adapted, I’m fine. But so many people with
epilepsy are nowhere near as lucky as I have been. There are cases of
adults and children who have grand mal seizure every few minutes. And since every seizure does a degree of brain
damage, that’s not good for anyone, especially little children
whose brains are still developing. I mean, I know how it feels when you come
out of a big seizure, it is really awful. Your head hurts, your body hurts, you’re
exhausted, so having those every day, let alone minutes apart…well,
it’s just unbelievably horrifying to me. So why am I making this video? Because of those epileptics who have
not had the same luck as me. Not enough is said about epilepsy in
the public arena, which is a shame because it’s not a small amount of
people that have it. 1 in 50 Australians has epilepsy. It’s the fourth
most common neurological disease in the USA after migraines,
stroke, and Alzheimer’s, and about 1 in 26 Americans will develop it
over the course of their lifetime. About 65 million people worldwide have epilepsy,
and 80% of those people live in developing countries. Now that is really scary, because
they obviously do not have the same resources that first world
countries have to treat and control the condition. There is a kind of historical stigma that
comes with having epilepsy. It
wasn’t that long ago that people who have seizures were thought to be possessed by demons and worthy of an exorcism,
which I would imagine still happens in some remote cultures
without the medical knowledge of modern society. Even now, people don’t really know if it’s
a mental illness, or a disease, or a neurological disorder, there’s
a lot of confusion about what constitutes a seizure, and indeed what
to do if someone has a seizure in front of you. All in all, there’s a bit of a lack on public
information out there. Which is bad, because anyone can have a
seizure, epileptic or not. Anyway, that’s my story. It’s not an uncommon story, and I would
really like as many people as possible to see this video. Not only to
raise awareness of epilepsy, but I really do hope other epileptic
people see it, just so they know they’re not alone. Any disorder like
that can be a very lonely road, particularly if you don’t have the
wonderful support network that I have. You can feel like an absolute
freak. You’re not a freak, there are more of us
that most people realise, and there are ways to lead a totally
normal life. Some very gifted people throughout history
and today are epileptic; Socrates, Tolstoy, Charles Dickens, Tchaikovsky,
Beethoven, Lord Byron, Leonardo Da Vinci, Vincent Van Gogh,
Alexander the Great, Albert Einstein, Richard Burton, Napoleon,
Sir Isaac Newton, Julius Caesar, Hugo Weaving has epilepsy; it is hardly
a barrier to achievement or greatness. It’s just a matter of persevering through
the crappy stuff, because there is a lot of that, and having faith in
the medical profession. Have
faith in your doctors, be honest with them, don’t downplay anything; I use to do that because I didn’t want people
to worry, it’s always a bad idea, just tell your doctors, they want
to know. I’ve put a few links to some epilepsy organisations
in the video description if you’d like any more information,
as well as the links to some charities if you’d like to help out
in any way. Thank you so
much for listening, and I wish everyone watching this video health,
hope, and happiness.