Who do you think you are?

Identity is a funny thing. It seems we're endlessly judged on it, but the way we look, in particular what we are wearing can be extremely powerful. Because common visual identity gives us a strong sense of belonging, be it in the colours of our favourite sports team, our national dress, or even more common similarities like gender or age, it's rare that people with epilepsy get to experience this strong visual sense of belonging to a group, especially in a crowd.

Sitting on the train on Tuesday, I found myself analysing the clothing of those around me... not something I'd normally do, but it was Purple Day, or International Epilepsy Awareness Day. The only time I ever proudly wear clothing is when it signifies I belong to a group I'm proud to be a part of and I was proudly wearing my purple scarf and medical ID bracelet on Tuesday.

As I sat on the underground train I wondered if the people around me wearing purple knew the significance of the colour they chose to put on their back that morning?

One of the reasons for the colour purple, is it signifies the isolated flower, lavender. I guess there's a slight irony in choosing a colour of isolation to make people feel less isolated through raising awareness. But quietly and slowly the presence of purple on the 26th of March has been growing since the inception of Purple Day in 2008.
Unfortunately, the colour being worn on the date isn't as well known as some of it's similar charity counterparts like the pink of breast cancer awareness, but it's building in momentum.


Epilepsy still remains isolating for the people who suffer it and I couldn't help wondering about the people wearing purple just happened to be wearing their favourite purple coat, or in fact, if they had worn that coat amongst a number of other options deliberately on Tuesday, because they were part of a group of people who were associated with epilepsy? I kept wondering if they were individuals themselves who were taking a day to feel less isolated with their condition a bit like me.

There was no real way to know for sure, but for the people who knew what it meant, I wondered if it mattered?
I wonder if actually seeing the colour being worn on that day made them feel, even for a very short period, that they weren't alone...

...and regardless of it was intended or not, it had the desired effect anyway?

A Purple Heart

St. Valentine is a name familiar the world over, especially on the 14th of February. However, in the same way there is actually more than one St. Valentine, the saint has more than one major patronage apart from that associated with love.
For those of you who started reading this blog last year, you'll know that he is also the patron saint of epilepsy. So a purple rose or heart, would be very appropriate to celebrate the 14th of February with, except the human heart is in fact, red. So it seems to make better commercial sense for gifts to be that colour.

It's somewhat ironic that a condition, that in many cases has the potential to cause issues in the romance department, would have the same patron saint as love. But then irony probably never really occurred to those in religious circles, when they chose patrons.


Why St. Valentine and other saints became associated with epilepsy, is more logical to an extent, but exactly the reasons for this being the case, gives a massive insight into just how much further forward with medical knowledge we are today.

Along with other patron saints of epilepsy, the reason's for St. Valentine being associated with the condition is because he is seen as a healer. In particular, he was one of the many saints associated with healing epilepsy. Since it was thought the condition was caused by an individual being 'possessed' by an evil spirit, it was the saint's job to pray for and heal these individuals. Since saints were generally judged on their success, it's likely the law of averages played in Valentine's favour, thus explaining the first reason for his connection with epilepsy.
The second, came from the phonetic similarity in the German language between the words "fallen" and "Valentine" and since in certain types of epilepsy, particularly tonic-clonic seizures, cause the sufferer to fall in many cases, the condition even came to be known as 'Saint Valentine's Illness, or Affliction'.

Perhaps though, a more appropriate patron saint of epilepsy, would be one of the most famous Christian missionaries in religious history, St. Paul.
This is because it is extremely likely that Paul the Apostle had the condition of epilepsy himself. It's reported in parts of the bible and by the man himself, symptoms that are identical to those experienced in epileptic seizures. In fact the connection between the saint and epilepsy was so strong, that in old Ireland, the condition was known as 'Saint Paul's Disease'.


Today however, despite beliefs that existed hundreds of years ago, we know now that it is extraordinarily unlikely that any saint had the affect of actually curing epilepsy.
What the connection with our patron saint does bring however, is a link to an extremely high profile day within western calendars. Whereas Valentine's day may be seen as over commercialised, epilepsy could do with some of it's publicity.


If that is the case, then it's only to the benefit of people who live with epilepsy today and maybe even our patron saint would help make it easier to find love, by curing the stigma of the condition.

Good Drugs / Bad Drugs

There are obviously good drugs and bad drugs, this much we know. But what's the difference in the people who take them?

With all the talk recently about Lance Armstrong and his performance enhancing drugs program and then more recently the tragic news, that London Marathon runner Claire Squires had unwittingly taken a now banned substance, what makes them different? More importantly what makes the likes of Lance Armstrong's drug use different from the drugs I take twice a day and unexpectedly, what makes us the same?


Well the answer to how we're the same comes where we both take drugs to make us better and to allow us to use cycling to raise awareness of a common medical condition. But that's where the similarities stop.

What makes me angry is that, far from the medication I take making me a better rider, it actually makes me a worse rider. What my medication does is make me a safer rider and quite frankly allow me to have the confidence to ride my bike at all. The Oxcarbazepine I take is, if anything, performance de-hancing and so I just have to train harder than I would if I wasn't on my medication.

What Lance Armstrong would class as his daily drugs, not only made him a better rider, but it also made him a more dangerous rider. After recovering from Cancer, it's incredible to think someone would so willingly put themselves and others in danger. The kind of danger which all too tragically showed it's face when Claire Squires died in last year's London Marathon after unwittingly taking a now banned substance.


The more important question here though is not necessarily if these drugs make us better or worse riders, but does our choice in taking them make other people like me better 'cyclists' than the likes of Lance? Here I'm defining a good cyclist as someone who is respectful, responsible and has a love for the sport.

I whole heartedly agree with Lance Armstrong's life-time ban from sanctioned sport. As a RAAM rider, past and future, I know that many Ironman athletes take on the race. Not only do I not agree with RAAM's lack of dope testing during the race, for safety reasons more than anything else, but if Mr. Armstrong were to take a fancy to riding it, I would be absolutely furious.

The reason I say that is two fold.
Firstly I hate people who cheat. I always have far more respect for someone who tried their heart out to achieve something and failed, than someone who cheated to achieve anything.
Secondly and potentially more importantly, science has shown that dopers have a long term advantage from their drug taking activities even after they've stopped taking performance enhancing drugs. So it's simply not fair to allow athletes who have so comprehensively doped, to compete against individuals who, like myself, probably wouldn't know the first thing about how to do it properly, never mind actually try it.


I believe honesty gets you far further in life.
The reason I feel like I didn't deserve to carry the Olympic Flame yet, is because I don't feel I've achieved my goals in relation to making a point about my epilepsy. It's a conscience thing with myself that pushes me and motivates me to achieve my goals with Team Epilepsy Forward.

At the end of the day, there's one person you can never truly lie to.

Back to square1 - but what is it?

Yesterday, I had my first seizure in about 3 years, so it was back to square one. But it's not quite the drama as the only other time I had been longer seizure free.
The only time I have been seizure free for a longer period of time, I had a career, a pension, a flat, a car and a life I saw myself living 30 years down the line. All of that disappeared when I had a seizure out of the blue in Glasgow's City Centre, where I worked as a Police Constable.

But yesterday was different...

I feel bad for giving my friends James and Jamie such a shock, as I had it while we were chatting, but despite the banging noise down the line, the confusion of who I was speaking to and the drowsiness afterwards, I explained that actually I wasn't in any pain. I never am during a seizure.

What was different about yesterday is that absolutely nothing changed in my life after I had the seizure. I went to sleep pretty quickly afterwards, sure. But when I woke up, I got on with life as if I hadn't had a seizure at all.

There's a reason why I say to people I ride my bike, that I wouldn't get my driving license back. That I wouldn't have a job where I would need to change my life from what it is now. It's because, should I have a seizure like yesterday, I wouldn't need to change it back.
When I live my life with precautions, 3 years after my last seizure I sometimes think, well why am I still doing things like this? Why am I still wearing my medical bracelet? Why don't I just have a nice bath?
Well, it's days like yesterday that make me glad I don't.

So to me, it makes sense that, rather than save up for a car, I save up for a bike. There are draw backs obviously - It doesn't have a boot, I can't carry passengers and it's not the best form of transport for long distance journeys, but then again, it's mine and it's freedom.


The way I look at my life is first of all to live it. But then I also look at it, as if tomorrow is when I could have my next seizure. I think if I live like that, then if I do have a seizure, I can always get on with my life, with the same effect as a stomach bug would have on me and in all likelihood, probably less.

There seems to be a lot of drama around epilepsy, it's unknown, scary, it has severe side effects. Except that a lot of the time it doesn't. For me it's not sore, it's not scary to me because I know it, it's just part of my life.


Epilepsy is only severe if you let it be, if you don't take the precautions.
....If you do however, it's just another part of you.

Where were you when....?

Every year one of the most respected broadcasting corporations in the world, the BBC, announce their Sports Personality of the Year, voted for by the public. This Olympic year, this British Olympic year, the individuals who didn't make the list could have easily been triumphant in any other year except this one. The standard was so high that double Olympic gold medalists were overlooked.

But the entire list was one filled with athletes that commanded respect, had gone on a journey, that had broken records, that became some of the most powerful role models imaginable, had finally fulfilled a dream, had finally catapulted a Briton to the top of their sport, or even just broke through excellence never seen in their sport before now.
These were people who had inspired every generation in the country.

So what seems like the yearly round up of sport, to end all round ups, may have well have been fitting for the end of the world... what a way to go out!
It was less of a question of who do you want to win, but with every athlete, every achievement, every moment summarised and remembered, more the question of: "Where were you when...?"

I still can't believe for me what an incredible sporting year it was. My love, my passion, my hobby, my job, sport for me, more than any other year was like a dream and what's even more incredible is when someone asks me: "Where were you when it all happened?" In a few cases I have the privilege of saying, "I was there".


As I've mentioned before, I'm a life long Chelsea FC fan. Since the age of about 5, I dreamt of going to see my team play at Stamford Bridge. This year, I went to see them again during the group stages of their European adventure and while not in Munich, was on the Fulham Road, home of the club, to see Chelsea lift the Champions League for the first time in our history. Amazing!
Picking up every highlight, I sat anxiously watching the Tour de France, having been to Paris the previous year, I watched the man who learned to ride his bike competitively in the very velodrome I sit on the trust board of, ride to victory in the biggest cycling event on the planet. The first time for a Briton ever to wear the yellow jersey in Paris. After le Tour was done I would run to watch the riders come speeding past in the closing stages of the Olympic road race and time trial. What a ride. What rides!
I watched to see unfolding before our eyes, British Cycling deliver even more golds in the velodrome where I volunteered in the Olympic test event. Sir Chris, my cycling hero, a fellow Scot and more importantly fellow Brit, becomes the most successful British Olympian ever. Sarah Story would follow with record equalling rides on track and road to tie with Baroness Tanni Grey-Thompson's modern Paralympic record. Incredible!
The rowing, where for the first time British females, took home gold from an Olympics. I had the privilege of knowing I had been even a tiny part of the team in LOCOG as an Intern with the rowing competition team 2 years before. I sat glued to the television where finally, finally, Kath Grainger, the stalwart of the women's rowing team, found her silver lining turn to gold. Wow!
A golfer since a young girl in Scotland, I was out of my seat during the Miracle of Medinah. The putts that took your breath away and elation to be European. At times I couldn't watch what was unfolding in front of me except peeking through my hands, that would cover my eyes from something I couldn't believe was actually happening, that we had won. Breathtaking!
How do you put into words, when a British man conquers a sport like Ben Ainslie in the Sailing, when a country embraces disability sport like never before in history, or when a British woman becomes the first ever in her sport - Boxing at the Olmypics, gold for Nicola Adams?
In the Tennis we watched Andy Murray grow into himself, a pheonix from the ashes of an emotional Wimbledon final defeat, to come back to the same ground as an Olympian and conquer it. Olympic champion, the seeds were sewn for a nail biting US Open final - how could I go to bed? He finally became the first British man since Fred Perry to win a men's singles major. Astonishing!

Then there was 'that Saturday'. 04.08.12, 21:00pm, the evening session and 46 minutes of incredible sporting drama. Jessica Ennis, in her final event of the Heptathlon, with the biggest welcome roar I've ever heard. Mo Farah, a wall of sound like a Mexican wave moving around the Olympic Stadium and all of a sudden across the other side of the stadium, a massive noise, cue Greg Rutherford.
3 British Olympic golds, where was I? I was there, in the stadium. Just Phenomenal!

Words don't do justice to what a privilege it has been to be British, to be a Londoner, to be a sportswoman, to be there. How do you ever top that? Will we ever see a sporting year like this again?
Not likely.


I can't see how you would ever top this year, except maybe this...
When you have challenges ahead yourself, maybe your time is next?

There's being there and then there's your definition of being there, actually taking part as an athlete.


It's impossible to ever forget 2012...

...but bring on 2013 and 2014!

The Elevator Pitch

It might be a perfect team, it may be a perfect challenge, it may even be a perfect package, but one of the obstacles Race Across America riders face, is that simply getting your team to the start line is an achievement in itself, particularly if you and your team don't live in the USA.

RAAM takes money, it takes backing, but you can have the most beautiful looking sponsorship proposal around. It means nothing if what you're doing doesn't mean anything to you. I always say it's easiest to sell what you're really passionate about, but people still ask...

Why RAAM? Why epilepsy? Why this kind of challenge and why should we care?

The short answer is, that in order to explain properly the answer to those questions, I can't give a short answer. But give me a ruddy big elevator and here goes:


I've said this before and in order to provide context I'm going to say it again. I'm in a very privileged position. So I'm not going to waste it.
I have epilepsy, but I'm one of the 5% of people with the condition, who was eligible for surgery. I have had such great care that even when the surgery had only removed 99% of my condition, medication was found to be able to control the rest we think. I'm in a position where I can demonstrate, just how much epilepsy actually effects the people who have it's capabilities and look for coverage of what I'm doing to try and save lives. The fact of the matter is sport doesn't lie. In an extreme form, it can demonstrate just what individuals are capable of. Why RAAM? Well, in its Solo category it's amassed less official finishers than individuals to summit Everest. To date there has never been a British female to finish the race Solo.

So that's what I'm trying to do. To push my body beyond any normal limits to show that epilepsy doesn't affect people in the way much of society expects it to. Gaining coverage of this will allow me to get the message out about what to do for epilepsy first aid. So to answer the question, why should anyone care? This kind of awareness has the ability to turn preventable deaths into saved lives.
Epilepsy kills more people than cot death and HIV Aids combined, each year.


Why epilepsy? Well, because it's grossly underfunded and in some cases very badly stigmatised. Having to deal with the condition is one thing, but having to deal with the stigma on top, is another. It's inexcusable that people are overlooked in such important areas of their life, because they're viewed as a condition and not as the person they are and can be.
The stigma is such that I know of many individuals who are in public life, that won't admit to having epilepsy, because they're in fear they could never work in their discipline again. Given the lack of knowledge about the condition, it's not shameful, it's understandable. So if what I'm doing inspires just one other individual to speak about their epilepsy and they had the power to inspire another person with the condition to talk about theirs and so on, then my job is done.


So there you have it. I'd like to think we are a great team and this is a really exciting project. I'm confident we have that box ticked. But for a company looking for something which is not only a cool concept, but that has the potential to change opinion and attitudes and even to save lives, I genuinely believe Team Epilepsy Forward ticks that box too.


We're not just a project that sounds fun and has a charity stuck on the side for good measure, we're a team with a purpose and a mission.

All we need are people who believe in us enough to help us achieve it.


... I think this is your floor by the way.

Nature or Nurture?

I've often wondered why people always comment on me being resilient and why in particular I'm strongly resilient, in almost exactly the same way as my friends with epilepsy and why we have such similar goals?

You hear a lot of people talking about someone having "good genes!" But I often think, (with no disrespect to my parents), that the resilience is more to do with growing up having had epilepsy. I wonder if the fact that I understood what was really unpleasant and what was just something which was a bit of a challenge, might have stemed from using the epilepsy, in particular the kind of fear aura's I would have so many of on a daily basis, as a measuring stick?

People seem to always talk about silver linings to everything, but in the case of epilepsy, I genuinely think there is one, of the person the condition produces at the other end. It's not an arrogance I hope, to say that I can accept I'm resilient, because it's the one thing that makes me proud to belong to the epilepsy community. The resilience and determination I see so much in my friends with the condition is inspiring to me, I'm proud that people feel I have similar qualities.
But the problem that makes me bang my head against a brick wall, is that other people without the condition don't see the same people, I and those close to them, see. If employers knew about the inspiration they are, if they embraced the fact that people with epilepsy possess qualities which makes them assets and not risks, as I've heard it being described, then it's a huge benefit to both sides.


It is however easy for me to talk about this from the comfort of my home, well over 2 and a half years seizure free. I was interviewed on Tuesday, on the BBC London radio, breakfast show about my experience of epilepsy and what living with it day to day is like. In all honesty I felt one over-riding feeling... that I am extremely, extremely lucky.

Less than 5% of people are candidates for surgery that have epilepsy.
- I was one of them.

Despite the epilepsy re-occurring, I still feel incredibly lucky. Because I even had the chance to join the Police, because I have the opportunity to cycle across America and by god, I want to relish the opportunity. I have the privilege of belonging to an incredible group of people, but without going through what they do on a daily basis.
I feel guilty sometimes. People with epilepsy shouldn't have to go through what they do with the condition and still get the side effects from medication, never mind the stigma they experience on the top. I complain about the stigma, but that doesn't mean I don't want to try and do something about it. I just hope I can turn my good fortune into awareness.


The reason I was being interviewed on the radio however, wasn't really to do with anything that I had done, but the incredible development of a potential new therapy, possibly even cure for the condition. People with epilepsy, could actually be injected with 'good genes', that calm down the electrical activity in the brain, preventing the seizures. So I guess we really could answer, "I've got good genes", when asked why we are the way we are. Unfortunately the science is at least a decade off, but I so hope that people are afforded the same luck I had with how well I was able to be treated.


As for the way I am if anyone asks... It's got nothing to do with nature, or even my levi's, I just have amazingly inspirational friends.

I just hope, I can eventually do their inspiration justice in the coming year and a half.