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.

Something old, something new, something borrowed, something purple

Last week was a triumph to say the least, it was a major step forward to achieving the targets of Team Epilepsy Forward. I looked back at the letter sent to me all those years ago while at university, from the then 'Leader of the Opposition, David Cameron MP', wishing Team Epilepsy Forward luck in undertaking our project.
The letter might be the best part of 3 years old, but the objectives still remain the same.

The project has become more ambitious since I first conceived the idea in 2007 though. A young(ish) student, I just wanted to get some press coverage for epilepsy by becoming the first British female to officially finish the Race Across America Solo. Due to the timing, it was never really possible till now, but the foundations of finishing the RAAM in 2008 have been invaluable and even taken me somewhere I never thought possible.
At no point during the ride back in 2008, did I ever think in a million years that someone like me would be carrying the Olympic Flame, let alone the day before the 2012 Olympics began. But in many ways, being given that honour has pushed me to see that more can be done and that the project could be bigger, further reaching and better than it was before. It's hard not to aim for the almost impossible, as many people have called parts of the project, when you have something so impossibly beautiful and inspiring sitting next to you, every time you wake up. I guess this is what you could call a kind of 'Olympic Legacy'.

But the project is stronger, more ambitious, tougher and more far reaching, than what was conceived 5 years ago. The newest development, is the process of recruiting the riders to not only qualify us all for the Solo category of RAAM for 3 years, but to break one of the ride's blue ribbon records.
I'm stunned, amazed, proud and sometimes in shock of the quality of our 4 person team. Along side me will sit, ex pro and Jnr National track and pursuit champion Ben Hallam, round the world cyclist Sean Conway and the solo Atlantic rowing WR holder Andrew Brown.
They're formidable team-mates and I really believe we're now a force to be reckoned with.

The next step is to convince sponsors that we're a forced to be reckoned with too. Something which adds to the difficulty of an already incredibly tough race. There after, it's the crew and strategy to put in place.
We've borrowed shamelessly the ethos of the David Brailsford machine that is British Cycling, to make those small gains which make for a winning team. You might think, a little here or there over 3000 miles wouldn't make much difference, but on the contrary, it's those little changes and improvements which magnify over the 3000 miles. Bike fitting, great bikes, great nutrition, great crew, they all count, even which beds we sleep in can give us that extra MPH that means hours difference.

But after the proposals are written, the sponsors are on board and the crew is recruited, after the strategy is planned, the inventory written and the training done, I still default to never forgetting why I'm here, why I write this blog, why I wanted to start Team Epilepsy Forward Cycling, why I wanted to become the first British female to finish RAAM Solo.
There's purple running through my veins but no-body wants to know. I know individuals with epilepsy who want to tell people they're not ashamed they have the condition, but society, in a large part, doesn't want to listen, they don't want to confront it, amongst all the causes thrown at them, it's not important, it's not life threatening, it's odd, it's scary, it's inconvenient...

...It's misunderstood.

So here's to forward, to raising awareness, to raising funds, to making a statement, to preventing, preventable epilepsy related deaths.

For me, it doesn't matter how many records are broken, it doesn't matter I was able to carry the Olympic Flame, if I own medals, an Olympic torch or a WR certificate, for any achievements... all that matters to me is that everyone knows they are owned by a team wearing purple or an individual with epilepsy.

It matters to me, that forever and always, the first British female to officially finish one of the world's toughest endurance events, was proudly wearing purple when she crossed the finish line.


It doesn't matter a jot what her name was.

What does it take to be the person you want to be?

Some would argue experiences open you up to new things...
...others might argue it's what stops you from experiencing them.

There's one thing I know more than anything else - people's brains are really bloody complex.
If they weren't we'd have this neurology stuff licked, we'd as a result cure epilepsy too. But it's not the case.

The epilepsy I had centred in an area where fear was triggered from. The result: The most complex, potent, non specific fear anyone could ever possibly describe. To have these petit-mal auras up to a dozen times a day wasn't unusual.
Thankfully for my longer term heath, they were exactly that. Non specific.

If you experience something which was unpleasant, then I wonder if you develop a fear to explore it again because is was specific? Maybe the fact just is, that, if you're open to new experiences, then you take a risk. You essentially open yourself up so something which could be potentially unpleasant.


It poses an interesting question, which magnified, arguably is one of the biggest questions people with epilepsy have to ask themselves on a regular basis.
- Do you open yourself up to an experience and risk unpleasant repercussions in the hope you never have to experience them, or do you never have the experiences at all?
The risks are magnified to some extent for people with epilepsy. You could have a seizure crossing the road to get to a new place you've never been before, but if you lived in a padded room incase you had that seizure, then you'll never experience anything new in your life at all.


The fact is that if you didn't take some risks, not only would you not know who the person you wanted to be was, you'd never realise your potential to be the person you do want to be.

We all overcome fear, be it as someone with petit-mal auras, or someone overcoming the fear of a more specific experience recurring. It's that, that maybe even in a small way means we can start to become the people we want to be by giving ourselves new opportunity to be open to new experiences.
It might be a simple as crossing the road, to end up opening a door for an elderly person - maybe you just want to help and that's the person you want to be. It could be as complex as letting our guard down, letting someone truly into our lives so that you become somebody's Mr or Mrs Right. Maybe the person you want to be is a mother or father, a husband or a wife.


Life is full of risks, but it's also full of reward too. The simple fact is we will all have to overcome the fear of an experience happening or recurring that is unpleasant at some point in our lives, in order to make sure we create an opportunity to be who we want to be. But there's one rule which I think everyone should go by...


When we experience unpleasantness in our lives, the trick is to get back on the bike!

The risk and then the reality

So the Race Across America, or "RAAM" as it's commonly known in the cycling community, is consistently voted as the "World's toughest sporting event", "The world's toughest endurance bicycle race". It's far longer in distance than the Tour de France, but must be finished in half the time or less in the case of the team category. It takes in some of the hottest parts of the USA, some of the highest, most mountainous parts, 4 sometimes even 5 lane roads. The Solo category has amassed less official finishers than people to summit Everest, oh and it's killed 2 of it's participants in the modern race's era.

But the risk about this 3000 mile monster race's is hyped up for media purposes. Granted it's not the safest holiday on the planet - if you can call it a holiday!? But if someone was thinking of attempting the race, but was too scared of it because it might kill them, bear this in mind.

The reason in the female category there is about a 75% DNF or Did Not Finish rate, is because the person attempting it, is ultimately not willing to risk the most important thing in their life, their health, above finishing the race.
I think all competitors have to go into the race with the feeling that the race itself is far less important than your health.


So for someone with epilepsy, what does that entail?

Well for a start you must have the best crew possible. Excellent nutrition, them making sure you don't have to worry about remembering your medication, because they'll do it for you, making sure you just have to cycle, eat and sleep and everything else is taken care of, is absolutely crucial.

Secondly having done the race in the team category is a good indication of how you will fare over the period you will do the Solo race too. That knowledge you get is as about as close as you can get to pushing your boundaries and knowing your limits, without actually doing the Solo race itself.

Finally, the knowledge that you are well enough to do the race.
Medical testing is something which is certainly not alien to me. I've had more brain scans, than many people have had hot dinners. So getting expert knowledge before the race, that you are as safe, as a non epileptic individual would be doing the race, is also crucial.

At the end of the day is always better to be safe, than push your boundaries that one pedal stroke too far.


For me, particularly with the objectives of proving a point about the stigma of epilepsy, what would be the point in ending up injured or worse, because of something that might be cited as being induced by my medical condition?
Most people, particularly women, don't officially finish RAAM Solo. So to finish the ride at all, even outside the time limit, is something which still proves a massive point about people's ability who have the condition.
And after all, I doubt people sponsoring you for charity would decide you didn't deserve it after you had still cycled 3000 miles!


The reality of the risk, is that you make it as serious as you want it to be, by pushing yourself to an extreme and by not knowing your limits, or competing completely outside of them.