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.
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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.