Meet Professor Phil Bland, John Curtin Distinguished Professor researching in the field of planetary science, who also lives with epilepsy.
Phil, what’s a day in your life?
"My epilepsy always happens in the morning, so I have to stay in bed for a certain amount of time after I wake up just in case I have a seizure. I get up after about an hour or so, so I get to hang out in bed for longer - which is not the worst hardship anyone’s ever had.
And then I come into work… well I’m a research professor, which means I’m trying to juggle about 24 things at any one time. However, I love my work - it’s a lot of fun. I have an incredible team of people that I work with and I think they’re used to me having a hopeless short-term memory."
What type of epilepsy do you live with?
"My epilepsy is generalized tonic clonic. When I have a seizure, it's big and I don’t get any warning. When it was at its worst, I would have seizures about every 4-6 weeks. I was having a really long break, and then I had another one a couple of weeks ago - which was kind of a shame because before that, you may be thinking "is it gone?"
Once, my wife had organized a nice little hotel break for us to celebrate our anniversary. I managed to have a seizure in the middle of the hotel buffet area - gave everyone a little bit of a surprise over their breakfast!"
What aspects of your life has epilepsy affected?
"Pretty much every aspect of your life. Mine was late onset so I didn’t start with epilepsy until I was 30... which was kind of unusual. I never took any pills. I did loads of exercise. You find that when you start taking a lot of pills (around 2000mg), it changes your body in a way.
I’ve also had quite a lot of head injuries, which is annoying. The side effects of the pills affect me in a number of ways. I have short term memory, I also get anxiety attacks – which, as a researcher that does a lot of public speaking, is annoying. When we had kids, I couldn’t feed my kids because my hands would shake too much; I couldn’t actually feed the little spoon into the little baby’s mouth, which was sad.
You find that it actually affects everything in funny little ways.
What’s the most common misconception people have of your condition?
"I think what surprised me when I started with it, is that many people who have epilepsy hide it - even from really good friends. It never occurred to me to keep quiet about it. When I started telling people about it, I found out that people whom I’d known for years had it. I did keep quiet for a long time about some of the side effects, which I regret. I try to be very open about it now.
People think you’re gonna go 'pop' at any kind of random moment. I don’t think people know what to do. People treat brain disorders in very different ways than they treat physical disorders, and I guess they’re scared of that."
What would you like the general public to most understand about epilepsy?
"Just think about it in the same way you’d think about a physical disorder: don’t be afraid of it.
If you see someone having a seizure, put a pillow to their head. That’d be really nice, because I’ve had a lot of head injuries due to seizures. It is important for the community to just realize that it actually does affect every area of someone’s life."
From your own personal background, how do you feel Western Australia fares in supporting people living with epilepsy?
"I think generally as a state, the care here is far better than what I was getting in the UK.
In the UK (which I moved from 6 years ago), you kind of get pigeon-holed if they determine, “okay so the drugs not working on him, so we’re not really going to try and fix it now.” You’re kind of parked over there somewhere.
Whereas here in WA, my neurologist has just been working ever since I started with her to try and fix it. She’s tried loads of different things, and we’ve done loads of tests. It's been fantastic and she’s done an amazing job. So, WA has been great for me in terms of my condition."
How would Purple Laces Month benefit you and others living with epilepsy?
"It would benefit us by raising awareness of epilepsy, and having people realize just how many people live with it.
That’s great, events like that that raise awareness are really good."