Hi, I'm Tracey Macmillan.
I'm here today with my son, Hamish, and we're here to talk about epilepsy.
Hi, I'm Hamish Macmillan, Tracey's son, and I'm also here to talk about
my experience personally with epilepsy and its impact on my family as a whole.
I remember very clearly when Hamish had his first seizure.
We were in a parent teacher interview, he was in year seven.
He sat there and stared, didn't move,
didn't respond to any prodding or
myself getting quite angry as to why he wasn't answering his teacher.
And after about 20 seconds or so he came to,
didn't know what had happened was a little bit, sort of disorientated.
I left that parent teacher interview knowing something was wrong.
And he then went on to probably
a few months later to have his first tonic clonic seizure.
I was more or less confused, particularly not knowing
the scale of the impact it would have on my life.
I thought it might have been a one off occurrence or something
that you could take a bit of medication and it would it would fix the problem.
Growing up with a brother with epilepsy was initially definitely difficult,
but something that I just didn't want to know about.
I was still young, I didn't understand what it was.
I also didn't want to be a part of a family that wasn't perfect
I guess I didn't want to have those issues when I did
first see a seizure, I remember we were at home and I could hear
the banging next door and I was like, Oh my God, he's being so frustrating.
And I went to go storm in the room and I could just see he's like,
fallen off the bed and was seizing and making these confronting noises.
And I just ran right out and closed the door.
I didn't go near him.
I didn't want to touch him. I didn't want to say any more of it.
I called out to mum and dad.
And then I walked into my room and closed the door.
I think at that age, trying to deal with that, watching
someone that you've grown up with, that you admire as an older brother
and seeing them in that position is really terrifying.
And I think as time went on, I had this guilt
about the way I reacted to the first seizure that I saw.
But then I have now realized that that is completely fair way
to react to it at the first time when it's something
that is so foreign to you and especially when it's someone that you love and adore.
It was initially met with, you know, like it's unlikely
you probably know too much, but not enough
and so, you know, you're being alarmist.
For most people to navigate the system
and to get the care that you want It's tough to get to the right people
and to get the right tests and to get that final diagnosis.
It's a tough journey.
They're some pretty brutal tests that I had to take at the time
to kind of decipher the extent of my seizures.
When it was getting more and more severe, taking, trying
and taking different medication with different side effects.
I guess I was trying to live a social
life, as you do at 13 and 14 and being taken out to go to hospitals
or or, you know, different clinics
wasn't the greatest feeling in the world.
Once I accepted the diagnosis, which was a process in itself,
I went on a real mission to know everything I possibly could
and then to find out what, whatever treatment, whatever the
the best of what we could get for Hamish to try and stop his seizures.
But unfortunately, 14 years later,
we know that that's never going to be something that's totally achievable.
There's always the threat of seizures.
It's not always the actual seizures that are impacting a person's life.
It's the potential threat of a seizure.
I mean, there's so many things we do in day to day
life that people don't realize that if you were to just lose consciousness,
how many dangerous situations that could throw you into.
What are the physical circumstances
that you're in, whether it be crossing a road or in the shower?
Those sort of things.
As time went on, the difficulty was around learning about the trauma
for not only him, our family and how the future was going to look.
Living with the fear of when his next seizure was going to be.
I really mentally struggled through it
and was pretty selfish, to be honest.
I was pretty angry at everyone around me, at him, at mum and dad, that
the attention no longer faced me.
I wasn't one of those understanding siblings
that was like, I get it, Hamish needs help.
From the outset.
we've always never tried to wrap Hamish up in cotton wool.
Now he's a grown man, it's not to me to say what he does and doesn't do.
But living a normal life was always the top priority
and being as safe as possible, but still participating 100%
in everything that he's ever wanted to do.
I would say the way the rest of the world treats me,
my broader friendship group are pretty well-educated on epilepsy now
I would say, just through me hanging out with them and having seizures around them.
They kind of know what to do, and they're pretty calm and patient.
There's a there's a lot of aspects to life
that aren't very accommodating when they could be to
people with epilepsy, things like transportation
and trying to get around and not having a license.
I've had to be more resilient whilst I have the positive of my friends
who are much more educated, they do do a lot of things
that I probably can't always partake in.
I look at myself as a grown adult,
having a lot of abilities that he doesn't have and I understand
why mum sometimes focuses on him in certain ways because he
unfortunately lives with a really difficult illness, even though he's
incredibly brave about it, but he deserves that attention. As a family,
we really have, you know, taken on epilepsy full on.
It was never really easy,
but I think we had to band together and look after one another.
And I think in a sense, I feel lucky that
I've got the relationship that I do with Hamish now because I think a brother
and a sister sometimes can't be close because, I mean, especially the way he is.
But I think now we are close because we depend on one another in that way.
Epilepsy doesn't define you as a person.
It's part of who you are.