Monday, 17 December 2012

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!

Saturday, 1 December 2012

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.

Thursday, 22 November 2012

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.

Monday, 12 November 2012

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.

Sunday, 14 October 2012

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!

Friday, 5 October 2012

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.

Saturday, 22 September 2012

Letting go of the fear of failure - Part 2

So you know you are going into a sporting event, a challenge, an experience, that you cannot replicate, but you have to believe you can do it before you will achieve what you set out to do.

If belief comes from your own known ability, then how can you generate belief without knowing your own ability to do something?

The Answer:
- You use inspiration instead.

People can be many things. They can be cruel, wasteful, ignorant, selfish, selfless, prudent, generous, insightful, most of all though, people have the ability to be incredible. I believe what we experience others doing, is what can inspire us to do more than what we think we are able to do ourselves.

Sometimes inspiration can even be found in fiction - a film or a book. I suppose the most powerful form of inspiration is real however. Individuals pushing themselves to the absolute limit, doing the smallest thing that they never thought possible, even acts of kindness can be inspiring.

When we find inspiration at its most potent, is likely down to how we learn and are stimulated ourselves.
I'm most inspired by what I can take in visually and through music. Watching someone achieve something perfect in sport, or watching someone pushing themselves beyond the limit people thought possible, is the kind of thing that inspires me. To listen to music which moves me, with words that stir me is inspiring to me too.

Being giving the opportunity to do something in the same or a similar discipline as the people I watched inspire me, with music and words that stir me in my head, is when I feel strongest in my own ability.

Of course that's just my experience of inspiration.

Everyone's experience of inspiration will be as varied as how they learn to study for an exam, or what kind of music they like, who they relate to and what they are trying to inspire themselves to do.

I wonder, or more importantly I hope, that inspiration is enough to do what I am trying to do.

I'm under no illusions that most people think I am completely mad for thinking of doing the Race Across America in a mixed team, never mind solo. But then, how else would I be able to demonstrate that people with epilepsy are able, not disabled people.

To do it would be beyond what I think I am able to do, because I have never done half of the Solo category before, never mind the full race. But if the inspiration which I can pull from different sources is powerful enough and strong enough, then it will be the psychological advantage I need, to do what I am setting out to do.

If I can be inspired by people who have done what I have done and gone on to more, or that do more than I have ever done but are the same as me... then I hope that will lead to the belief in myself, that will allow me to ride the world's toughest sporting event and conquer it.

After all, when it comes to something like RAAM Solo, all you can do is prepare the best you can, have hope, inspiration and eventually belief.

You might fail. But if you never had the inspiration to believe you might have been able to do something in the first place, then you will never even attempt it.

Friday, 21 September 2012

Letting go of the fear of failure

The Team Epilepsy Forward Project, is one that is made up of 3 parts:
The 24HR Track Cycling WR, the Race Across America Mixed 4 Team record and of course the Race Across America Solo.
The ultimate aim, to try and raise funds for the UK's largest member led epilepsy charity, Epilepsy Action and most of all, become a case study for people with epilepsy to point to and make a mockery of the stigma of the condition.

Taking on one part of the project is by far and away the toughest, most terrifying, most difficult part of it all. The Solo RAAM.
The Solo race isn't terrifying because of the risks however to my health. In many ways it's more terrifying to me, that you wouldn't finish the race. There has always been a constant doubt in my mind as to my ability as a cyclist and more importantly as a person, to be able to finish the "world's toughest sporting event".

Many sports psychologists say if you don't believe you can do something, you will never achieve it in sport. The difficulty with the RAAM Solo however, is you can never truly train for the race. You can't simulate the 3000 miles Solo in under 12 days 20 hours, unless you actually do it. So you can never know if you are actually able to achieve it as a rookie rider.
Unlike marathon runners who many, a few weeks before their big event would run the same distance, the ultra cyclists can only train for a plateau of ultra endurance speed... and pain. After that it's just about hanging on for dear life.

The biggest fear for me, is the fear of letting people with epilepsy down. That, in a way I would be proving the stigma right. But then is that my own ego, or is it a real issue?

I wanted to show that despite adverse effects from medication, the experience of overcoming the condition and dealing with the every day of epilepsy, is something which is more powerful. At the end of the day, if I get to the brink of breaking point in the race, if my crew asks me: "Katie, why are you doing this?" I'll never lose sight of the answer.
After 23 years of having the condition, controlled or otherwise, the ups and downs, the stigma, the lack of awareness, information, the massive underfunding of the condition, I know that doing the Solo RAAM would be doing my part to try and tackle all of it, even just a little.

But I need to not be afraid of the embarrassment of failing. I need to accept, that merely finishing the race, even if it's unofficially, would demonstrate to some extent what I hoped in regards to the stigma.

One thing I have learnt from other Solo competitors of the race is that, you have to let go of your ego and not be afraid to show yourself in a light that perhaps you wouldn't like to in an everyday scenario. In doing that, you loose the tension that is a monkey on your back, allowing you to be loose enough to just get stuck in to the race itself.

The race is slow and punishing and for a long period you have nothing to rely on but you and your bike. So the first thing for me is I need to know I love my bike enough to spend that much time with it! I know I do.
The second is to not be afraid of what I can and more importantly can't do. Each yard of every mile, you are for much of the time, alone with your thoughts. If your thoughts turn to doubts during the race, then you know you're in trouble. The RAAM is too big to try and landmark in many cases. I wonder, if actually the best way to approach the race is just to enjoy riding it, soak in the incredible surroundings and take in the privilege of being part of the race.
It's impossible to landmark in relation to the finish. Riding 100 miles is no mean feat, so focusing on how close you are to the end when you are in the middle of riding 100 miles will destroy you. Letting go to thinking about the finish and taking the race 50 miles, by 50 miles is the only way you can achieve what you are setting out to do. Getting to the 1500 mile mark might be a high, normally. But then there's no other sporting event on the planet, where knowing you're over half way there, means riding another 1500 miles.

I think where riders fail is when they stop enjoying riding. To a large extent, you can never enjoy RAAM, it's hell on wheels. But many parts you can.
The simple pleasure of riding your bicycle through some of the most incredible scenery. The little highs of your crew encouraging you every pedal stroke of the way, or when you hit a little mile landmark them going nuts. If you focus on that rather than the enormity of what you're actually doing, then you have a chance to succeed.

I have no doubt that the scariest part of the whole race will be on the start line before the race even begins. You have no idea what will be ahead as a rookie, you fear becoming another member of the 75% club, that didn't finish the race officially. But that's about my own ego talking.

The real question will be, is just riding 3000 miles in less than 2 weeks enough to make a point about the condition?

The answer is yes. I won't get a medal for it, I won't get my name on a plaque or prize money. I won't get my name in the record books. But at the end of the day, if I loose the ego and just go into the race to ride, then I'll let go of the biggest fear I have about RAAM.

When that's the case, I believe that's when you get the best out of yourself.

Friday, 14 September 2012

Figuring out who you are

I've always loved a good quote as you probably know by now reading the blog.

One I've always found interesting, although a fictional quote, but never thought about in depth till now is this:

"Later that day I got thinking about relationships. There are those that open you up to something new and exotic. Those that are old and familiar. Those that bring up lots of questions. Those that bring you somewhere unexpected. Those that bring you far from where you started and those that bring you back. But the most exciting, challenging and significant relationship of all, is the one you have with yourself. And if you find someone to love the you, you love... well, that's just fabulous."

I think that regardless of what you are told, you have to take in what you can relate to yourself and make of it what you will. I think if you don't know yourself, then inspiration will be superficial and you may end up sacrificing parts of yourself for others.
Some could argue in life that it's necessary to be more giving of yourself to others than you would like, or if you don't realise you're doing it, than is healthy. But if you're not happy in yourself then what is the point in being in a situation where you're giving too much?
What is more important, I believe, is knowing yourself well enough to know where the line is that means you are unhappy in what you put in to life, particularly if you are not getting back from life what you would like.

There are examples where there are exceptions. Work is the most obvious one, you may not enjoy every part of your job, but at the end of the day you are getting to live a fuller life by having a job. So what you get out of that is enough to sacrifice more of yourself than you might like, compromise with yourself more than you would have maybe hoped. At the end of the day many of us just don't have the luxury to live to work, we work to live.

There is however a huge part of your life in terms of your personal relationships where in many cases you have to be selfish about what you want and who you are.
But at the same time, you have to understand who you are first before you realise in what areas of relationships you can't compromise.

I think it's difficult in an era of mass information to know who you genuinely want to be. Media loves to put individuals in a box. In the same way people with epilepsy sometimes self stigmatise their condition, people who could be put in a convenient box generally tend to put themselves there without too much help.

I think you need to take a step back from life sometimes, be it travelling the world and seeing new places, or just simply doing something you never thought yourself capable of. New experiences develop you as a person, they open up new possibilities to you and help you understand if something was worth giving of yourself for, or actually if it's not something which makes you happy.

The one thing I've understood through my experience of loosing my job in the Police all those years ago, is that I've been most happy when I'm taking part in sport. I've also realised over the years that I have a mentality of not being satisfied if I haven't reached my own personal best in my given sport. Not because of what others think, I've actually come to realise I don't pay much attention to praise and find compliments hard to take if I don't feel deep down I deserve them.
Instead I have a mentality of, for example, trying to be the best in the world at my sport of Ultra-marathon cycling. I've also realised that giving more of myself to my cycling in order to raise awareness of Epilepsy is a sacrifice worth taking.

I know that if I am able to achieve my goals in regards to my cycling and more importantly my awareness raising for epilepsy, then I will finally be satisfied.

So what would I do once I feel deep down inside myself, I've truly achieved my personal best? Well I guess I will understand more about myself when I do and I'll be able to tell you then. But for now, I know what and where I want to focus my energy at this point in my life.

I know people with epilepsy find it hard to fit in, especially in areas like team sports where at a participation level, being chosen to be part of a team could sometimes be more about how you perform in a drinking competition, rather than on the field. But that's not me, and when it comes down to it, I don't believe that's the spirit of sport either.

So to anyone in a scenario where they feel under peer pressure like that to get pissed for example, I would say this:
"If you can find someone to love the you, you love... well, that's just fabulous."
...and if you can't, keep looking!

We should never be ashamed to be the people we are, once we've found out who we want that to be. So if you know you don't want to compromise, then don't and keep looking for that special boy or girl, that special team, a special cause, maybe even that special job, that, in the end...

...will be just fabulous.

Wednesday, 12 September 2012

Holding on as tight as you can to inspiration

Without sounding smug, London 2012 confirmed something I already knew.

- That sport seems to have a power like no other to make individuals more aspirational, more inspired, more motivated, more connected with people they've never connected with before. It can not only only give an individual a feeling of belonging and pride, it can give that to an entire country.

The London 2012 Olympics and Paralympics changed without a doubt, the way the UK saw itself, saw disability and ability... the way it saw sport.
It took the genre out of cynicism, of stories of corruption, of tribal fighting and drinking culture, of being about just money and took it back to it's roots and stripped sport to it's core. It showed as Seb Coe said, that: "In every Olympic sport there is all that matters in life. Human's stretching themselves to the limit of their ability". It brought together nations in friendship and within the UK itself, neighbourhoods together in friendship too.
From the local boys and girls carrying the Olympic Flame to it's destination to the local heroes being called on by that flame to excel in every way possible. For us, in the United Kingdom, we united as a country to see triumph we never thought possible. And everyone had a hero of their own to inspire them, be them learning to ride their bike on the same velodrome as Wiggo, or be them from the same place as the triumphant county of Yorkshire.

On Monday, during the Greatest Team Parade, sadness this incredible summer had ended was palpable. People were asking - "what now?" The Olympics and Paralympics have been like a drug our country has had the most incredible high from. But the side effects could be even better than the drug itself.

Athletes can become heroes or heroines to inspire people to take part in sport. But they wouldn't have become those incredible individuals they are, had they not been part of the participation pool, that gives so much satisfaction on a basic level, but also creates new heroes and heroines for the future.

There is a sadness to the ending of what has been the most incredible summer of sport. Sport of the best kind, of sportsmanship, pure tireless work and training, of focus, of drama and intensity and athletes putting their bodies on the line to represent their country and do the jersey on their back justice.

But London 2012 can already say: "Generation Inspired."

The question is, how will that translate into grass routes level participation?
Well I can only tell you my personal story of one particular athlete, who is a London 2012 Olympic Gold medalist and how she has inspired me to take on a very particular challenge to raise awareness for Epilepsy.

Joanna Rowsell is an Olympian and like another hero of mine Dai Greene, she is an Olympian with a medical condition. When I first saw Jo take to the boards at a world championship I remember vividly wondering if she had cancer? Her performance was astounding and like the misunderstandings there are with epilepsy, I misunderstood Jo's medical condition, alopecia.
I'm ashamed I thought that Jo's alopecia was the result of side effects of cancer, but then I had never heard of alopecia. Because of Jo, I ended up researching the condition and to me, she is the perfect example of how you create awareness through inspiration, rather than ignorance and self stigmatisation through a role model's fear of exposing their condition.
She has never worried about removing her helmet to stand on a podium (usually the top step I might add), where her condition is in full view for everyone to see and for young people with the same condition, to see and be inspired and to have a specific role model of their own to relate to.

But I don't have alopecia, I have epilepsy. So how did Jo inspire me I hear you ask?

Well, she inspired me for two reasons, I could relate hugely to feeling like I shouldn't be ashamed to show signs of my own condition. In my case, it's the white streak on the right hand side of my head where I had my neurosurgery and my purple medical bracelet I wear 24/7.
But Jo inspired me as a female cyclist too. At the Olympic track cycling test event in the Stratford Velodrome, I saw great courage, courage of pushing yourself to the absolute limit. I was a field of play volunteer within the velodrome when Jo rode one of her toughest events, the individual pursuit. She showed her guts, quite literally, pushing herself to the point of being sick. But she also won the race.

The absolute commitment to that particular race made me think even more seriously about my own time trial of a different kind - trying to break the women's 24hr track cycling WR.

I'm very thankful I managed to make it up onto a wall near Charing Cross Station during my lunch hour, to send her a personal message on Monday during the parade. I'd actually made a bit of a hash of what I had planned to do - to salute her with my Olympic Torch personally, so I wrote a message on a board instead and proudly held it high, wearing my Olympic Torchbearer uniform in the process. My torch was in the window of the jewellery shop who had so kindly donated a necklace to my charity Epilepsy Action. Unfortunately I hadn't realised the shop was shut on the day, so it all almost went a bit Pete Tong!

But the athletes representing us during London 2012, deserve all the cheers and thanks we can give them. From me - thanks to Jody Cundy for pointing me out to Jo in the crowd, as they stood on their float lapping up the applause for their incredible achievements.

There was however, one notable absence in the parade and you could argue, the Olympics only took a few days to create it's first legacy. One of personal inspiration and self belief - Andy Murray becoming the first British man in 76 years to the day, to win a major tennis title.
Andy beat Novak Djokovic in five sets to win the US Open only a couple of weeks after winning Olympic Gold and Silver in London.

I hope the attitude towards sport in this country changes every generations view of it. The likes of Jo has showed exactly how to be an inspiration and lead by an example of physical achievement which no-one can dispute. She's let her legs do the talking.

My only worry is that apparently the world is going to end in 2012!

So to whoever is responsible for this can I ask you a favour...
Please make sure you let us see BBC Sports Personality of the Year 2012 first, before you wipe us all out.

Many thanks,

Katie, age 6.
... plus 20.

Wednesday, 5 September 2012

A question or disability or ability?

Our super-humans, Team GB, portraying disability in the inspirational light it can be...

But is it a good thing or a bad thing?

There are 2 arguments, does it create an 'us and them' scenario, or does is show the resilience that disability creates in people and inspire disabled people themselves to be the best they could ever be...
Does it inspire a disabled generation too?

To look at me, you would think I am an able-bodied person with no disabilities. But I'm not. You might think I was just normal, but then I would ask, what is normal?

I don't know anyone who is normal, I think we've all got some form of disability, no matter how mild it might be. The medical conditions that create disability aren't finite, they have a range, varying severities. You could make an argument to say Usain Bolt himself is disabled when it comes to long distance running, even the USA Basketball team are all likely to be classed as having the disability, "giantism".

So in a way, the media could portray to everyone an us and them scenario, but then, they wouldn't be portraying disability.

There's a reason I have waited to post about this, till the Olympics were finished and the Paralympics started. It's to make this point: Paralympians are no less ordinary than Olympians and in the same vein, what people may have failed to notice is that Olympians may be, or will likely be disabled under certain circumstances just as much as Paralympians could be.

There are obvious examples, Dai Greene, Joanna Rowsell and Jo Hopkins all have medical conditions and therefore would be classed as disabled, but they are all able bodied.
The more discrete examples could be of extreme strength causing delicate skill issues, extreme speed causing endurance problems or the other way around. Many athletes could have dyslexia or even mental health issues, but would you consider them just as disabled as Paralympians?

The answer, so it's fits into an easy box to sell, is we probably would consider obvious disability to be different. The reality is that we shouldn't, neither should we look to Paralympians as the model for disabled people to be. We don't expect that of able bodied people in relation to Olympians.

What we should do however is consider this, every person has a right to access sport, or any other pursuit they wish. Paralympians are physically no more or less extra-ordinary than Olympians, in the same way that people with disabilities are no more or less physically extra-ordinary than people without disability. We just use a different scale to measure each individual by and it's as huge as the scale by which every individual will be disabled in some way, in a particular scenario.

What we have to take away from the Olympics and Paralympics is this. If ever we needed inspiration be it a young girl from Sheffield, watching Jess Ennis win the Olympic heptathlon, or be it a young boy who is a arm amputee watching Jon Allan Butterworth pick up 2 Silver medals in the Velodrome, we can all relate to someone. Even if it because of a fellow countryman we all have someone we can relate to and inspire us to be the best we can be. It maybe not in sport, but just in life.

The one thing sport and indeed disability teaches us is how to overcome, be it an injury, life threatening or otherwise, disability or not, we can all take inspiration from the resilience it took our hero or heroine, to achieve the incredible feat they have by competing in the Olympics and Paralympics.
They might have a recognised disability, they might not, but it doesn't mean they aren't able to be one of, if not the, best in the world at what they do.

We all have something were good at, it might be our job, our hobby, a special skill...
- so why don't we aspire to be the best in the world?

The answer to the question:

Friday, 3 August 2012

What do you do once you've carried the Olympic Flame?

So what on earth do you do to top carrying the Olympic Flame?

Answer: Don't bother trying, unless you're going to be a future Olympian!

The real answer, you try and come down from the high of doing it, savour it, honour the faith in your nomination to do it and use the torch as a force for good.

So how will that work?

Well I guess I could have stopped the blog on the high of carrying the Olympic Flame, having my Olympic Torch to look at to inspire me, taken it on a tour to try and inspire others. But it's not within me, not to aim for more - my personal best.
This is the start of a new chapter in the life of the Epileptic Ultra Cyclist. When there is more to do, more importantly, when there is more I feel I can do, I don't want to look back and say, "maybe I didn't give my best?" Or "what if?"

I always felt I was a flash in the pan in relation to the Olympic Torchbearer honour, but I want to satisfy myself that I was never going to be that kind of Olympic Torchbearer. Partly for my own personal targets, but also because I have the opportunity to do something with my bike for Epilepsy awareness and I would never want to throw that away.

Charities in this country don't have the budget for big PR campaigns, positive campaigns as apposed to bad press about Epilepsy related deaths of children of high profile individuals.
There are a handful of amazing role models, of which I am never likely to be able to ever emulate, but I can do something - and something is worth the effort.

The new chapter for me now, is a 2 year £60,000 project, of cycling records, cycling firsts, extreme endurance, finding sponsors and finance, a huge amount of training without jeopardising my job and finally being able to say: "If someone with Epilepsy can cycle 3000 miles in less than 2 weeks, then why can't they have a desk job?"

Epilepsy is a very bespoke condition, but every sufferer shares a common enemy of the condition's stigma. Getting rid of that, would make life so much easier for people with Epilepsy.
- For my friends, for people I constantly meet with the condition and ultimately it will come to pass I believe, that people with Epilepsy can show their true colours.

There's no way I could single handedly tackle the stigma across the world, but even if it saves one person's life who may have died from SUDEP, that it allows one employer to see the light re the condition and allow one person with Epilepsy to flourish...

Then that sounds pretty good to me.

Sunday, 29 July 2012

The Diary of an Epileptic Olympic Torchbearer

I was originally planning to write a post on the day I was due to carry the Olympic flame. But doing that, wouldn't have conveyed well enough my experience of what it was like to carry the most sacred symbol in sport, on it's destination to the London 2012 Olympic stadium, with my torch.

It's difficult to take in the enormity of what I had done on the 26th of July 2012, I was in autopilot. Only after I was able to sit alone, quietly with my torch and reflect on what I had done, am I able to explain how I felt. 

It was truly a day like no other in my life, it felt like 2 days in one. This was in part due to being required to be at my meeting point in Camden at 4:45am, so I had been up since 3:00am running on excitement, adrenaline and pride for the rest of the day. (I had a very early bed time, the night before!) But seeing the sun come up in the morning and people gradually begin to appear to see the flame go through London, was amazing.

One of the most amusing parts of the day was actually, after messing about going to the toilet, I ended up being the last on the bus that would drop us off where we would start our run. Seeing a seat toward the back of the bus, I sat down. As I sat down I turned to my right to chat to who I was sitting with, stunned as I realised it was Sir Clive Woodward!

After getting off the bus at the corner I would pick the flame up from, what hit me, I can't even begin to describe. It was 07:04am in the morning and there was a wall of people cheering, shouting my name.
Actually running with the flame was a bit of a blur. The way I describe it is a blur, but the most incredible blur I've ever experienced in my life.
One thing that caused some confusion amongst those of my friends who watched the coverage on the online BBC feed, was something that I had planned for a while - to dust down the painted bike on the bike lane in my leg. Not as anything meant to be particularly quirky, but just because I wanted to do something that symbolised how important cycling has been in my life.

Watching the ceremony the night after gave me context to the whole event. It was an incredible feeling of belonging to a hugely privileged group of people, who were able to be part of something, much bigger. The communities that supported the flame round the country, the symbolism of what it means, the enormity of being part of an Olympic Games in helping to deliver safely, the flame that would call on athletes around the world to compete in 2012.

People keep asking me if I would sell my torch - the one I know, I carried the Olympic flame with and no-one else.

My answer: Not for all the money on gods earth.

Having something which inspires you to do more, that's 3 sides represents aiming higher, faster, stronger and most importantly, something which I can give to others to hold and hope it inspires them to do the same is just something that money cannot buy.

There is only one way I can describe that day and having my Olympic Torch sitting next to me now. 
- Truly incredible beyond belief.

I did have one major objective however, which I mentioned before. 
- That I would thrust the torch up in the air showing my purple medical band, to make sure people with Epilepsy knew, that I was carrying the flame for them, more than anyone else.

All I can say is, 

- Mission accomplished.

Sunday, 22 July 2012

7 days

It's amazing the difference a week, 7 days, or 168 hours can make.

Last week was a low point for a number of reasons.
I felt down, defeated, like I couldn't face things I had enjoyed as normal and in essence I felt like karma wasn't looking kindly on me, that things just weren't going for me.

Many of the things didn't and haven't changed, but none of them were in my control, so I also felt helpless. I believe sometimes you just have to go back to your default setting to pick yourself up again.
But I also realised something this week. Something I had never thought of before when I tried to cheer up others, who were down or upset.
When someone is trying to pick themselves up from what they are feeling and where they are, it doesn't work for people to tell the individual that everything will be okay, that they're doing a great job etc.

That individual has to find whatever it is that makes them believe in themselves.

Had it not been for one tiny thing, I think I would have completely written myself off that weekend and sometimes you just have to look back and laugh, otherwise you'd just end up in bits.
The one thing for me, it probably won't surprise you to know, that helps me believe in myself again is my bike. But I know I've had a really bad weekend, when I get attacked by a bus and end up tearing into my shin with the teeth on my crank-set, after flying onto the pavement.
- This was on the way back from a ride to clear my head!
I sat on a wall in Trafalgar Square with a British Cycling jersey on, re-hydrating myself and there was a little boy who couldn't have been more than 5 or 6 sat across from me. What he did not only made me smile inside and out, I was having a fair giggle to myself too. He beamed at me and gave me a thumb up. It was the sweetest, best timed thing I'd seen. But it was also very funny as, no sooner had he done it, than he promptly stuck said thumb up his nose!

I guess you take the good with the bad and it was a day of ups and downs, but very much like life really. Karma only exists if you look for it, life is never perfect, it wasn't meant to be.

To those who said to me: "Saying it will all be okay - doesn't help!". I understand why now. It doesn't mean we shouldn't say it, give support and any insight we can to comfort people.
But I would just say one thing to anyone who has a patch it their life that is rough or if they feel down in any way.

When everything becomes locked up inside you - tension, anger, frustration, fear, upset... the best way to release it and get back to who you are is sometimes just to scream.

But it doesn't involve going out into the street and yelling at the top of your voice. I was incredibly lucky that I found, my way to get back to normal, was for my legs to scream at my bike pedals and keep going until my legs went numb. That feeling of racing along a road freed me inside enormously.
For someone else who is a dancer, their 'scream' might be to put every inch of feeling into the movement in a routine, for an artist it could be to let out all their emotions on a canvas in paint, for a singer it could be to hit the highest note they can possibly do, for an academic, it could be to lock themselves away and write, for a musician, it could be to play their instrument like they've never played it before.

I think if you can find the way you best express yourself, however that is, going back to that and driving all your feelings in that direction, can give you back your strength, even give you strength you did know you ever had.

I think when you get that strength back and can give your head space to think, you get perspective.

I look back on last week and laugh at what happened in hindsight. It did work out okay, so I look forward and I'm sure I'll have more periods where I feel I haven't the strength to do something and need to go back to my bike.

As for the bus...
Well I held onto my bike for dear life so as not to damage it and ended up taking the lump out of my shin instead.

But the scars healed quickly and I got back on the bike and rode it the day after...
... and every other day since.

Sunday, 8 July 2012

The Hurt Locker

I think people lock things up and suffer because they feel the alternative is worse.

I think sometimes sufferers are afraid of what people will say, that they'll talk behind their backs, that they are made to feel they need to keep some things in the family or not explain the way they are.

I'm ashamed to say it took a number of very brave people to talk about what I'm about to talk about, before I had the strength to do it now too.

For years I had suffered from mild depression as a result of a history of school bullying and bullying from my own step-mother. Whist on an Anti-Epileptic Drug (AED) for a period of months, I went through severe depression where I didn't even recognise the person I was looking back. I nearly failed my second year of university because of the side effects. Lethargic, uninspired, angry, with no real insight in to my behaviour, I demanded to be taken off the drug only after I also suffered nausea as a result of it. It's the only time I can honestly say I was glad to have the latter side effect as it was that, that made me want to change my medication, not realising my personality was self destructive on it.

The only silver lining is I became more self aware as a result. I began to analyse the way I behaved more, I realised that something wasn't right and knew I needed to get help to fix it.

The other thing that came out of the episode was I began to help myself too. I became an amateur behavioural psychologist in a way, understanding why I had grown up as a target for bullies and what legacy that left on me.

There was a change in my life. I sought treatment and examined more how I could help myself too.

But it was a lesson I learnt, that made me worry. It made me worry because I know severe depression is a serious danger for people with Epilepsy. It's something that does cause tragic deaths in people who experience it. It's the double whammy of the condition and the side effects on top of it.

I strongly believe people with Epilepsy need to be honest with those around them if they feel they may be experiencing depression because of their AED's... and to those around them - make sure you check they're okay too.

The old expression "what doesn't kill you only makes you stronger" is so true. You learn about yourself, you change to live a more fulfilling life and you hopefully go on to make sure those you recognise having the same feeling you had, know about the light at the end of the tunnel.

It's not an easy jump to make to seek treatment, but it's one so very worth taking and grabbing with both hands. It could be from a Doctor, it could even be something like CBT, self administered with some help from a friend or family member.

To those that 'came out' about their condition, thank-you for inspiring me to write this and talk about my own experience with depression.

To those that may think they could have depression - make the jump.

- There's a huge safety net for you to dive into. People rally, provide support, don't judge and when you do and when you get back on dry land from the net, you'll realise it's a much better place than it was before.

Friday, 29 June 2012

Tonight, we are young

I think many young people who are at school or even university are in a rush to grow up. On the one hand I can empathise with them, on the other I envy them, as they have a clean slate and the opportunity not to make the mistakes that I made at their age. I think my little sister for example can get higher grades at university, can do more than I did when I was her age, go out more, travel more etc.

But on the other hand, I completely empathise with people who want to get their school and university career in particular, over with. I hated academia, I was never good at it and had the attention span of a goldfish. I loved the sport aspect of being at university, it was the biggest highlight for me, more even than the social side. But when it came to large amounts of reading I struggled as I have my whole life. 
It all stems as most things have in my life, from my Epilepsy and the continuous Petit-mal Auras I had numerous times on a daily basis. 

But I would like to stay in my mid 20s for a good while longer and relish the age I am. It's a point in my life where I feel more independent, feel like I am doing something worthwhile and am enjoying my life outside work too. 
There is an interesting social aspect to my life however that wouldn't be something that someone would expect someone with Epilepsy to enjoy. I am safe drinking alcohol, be it on hockey socials or out with my friends in a club or bar. I also, like the majority of people with Epilepsy, have no issues with strobe lighting, so thoroughly enjoy clubbing. 

I'm sure in my 30s I will look back at my 20s and think I should have done things differently and probably wished I wasn't as keen to grow up. But then I thought, like many people in their teens, that I would be getting married and having kids in my mid 20s. I couldn't even begin to think about that as a realistic idea now I am there, but when I was a teenager I thought my mid to late 20s was fairly a mature and old age. 

How time flies!

It was a big achievement for me to be the youngest British female to complete RAAM across all categories. But again it was also a learning experience.
I think your teens and 20s should be a time when you can be relaxed, eventually settle down be it in work, in a relationship or in life generally, but that you should never wish the time away. I have an issue of looking to far forward to the next thing I will do. Sometimes that's an attribute, but in many cases, I wish I could stop and appreciate the present more. I think if I'm not careful I will spend so much time planning what I am going to do next, that I will miss out on absorbing the amazing experiences I am going through at the moment. 

The irony with many, especially those who had a more difficult young life be it through Epilepsy or something else, is this. If you spend your life wishing you could have done your time at work quicker to be more senior in a job, be older to be able to get married or have kids, get out of a situation like school, by the time you get to the point in your life where it happens, you've missed out on what you did to get there.

There's a great quote from the TV series Sex in the City: "Your 20s are to make your mistakes, your 30s are to learn your lessons and your 40s are to pay for the drinks."

I think it's a great motto to live your life by however I would simply say:

You're only young once: Be reckless, fun, crazy, in love, out of love, energised, make mistakes, be inspired, learn a bit...... you can always grow up later.

Thursday, 14 June 2012

24hrs to Tango

So a bit of an update for you all:
In my wisdom, I have decided I quite fancied taking on the female 24hr Track Cycling world record.
- I really am a bit mental when you get to know me!

I don't have the date when I will attempt the record organised yet, I don't have my training schedule sorted yet and the venue (The Herne Hill Velodrome), I will almost certainly attempt the record in, is still waiting to have lighting built for the track. Although luckily for me, the plan is to add the lighting very soon. I suppose it would be no fun if there wasn't a bit of adversity chucked in for good measure.
All I know is that I will attempt the record this year and give it a bloody good shot, and that if I don't leave everything on the track, I'll be mightily annoyed with myself.

I should probably explain that in what would probably be considered my relatively young, Ultra-cycling career, I've had a pretty big idol, Seana Hogan. She holds most of the RAAM Solo female records and up until recently held the World 24hr female Track record when Italian Anna Mei broke the record last September. 
Seana a month ago went 3 miles better with a 444.78 mile record. 

So I will be aiming for Seana's record again.
- Well it'll give me something to do this year!

Not only that, but it's also very good training for the Race Across America in terms of my average speed training. As should be pretty evident from past posts, the RAAM Solo is my ultimate aim, but the nature of Ultra-cycling means there is always a record to try and break.  

I admire Seana hugely, she is a massive icon of the sport. So if (and it's an incredibly big IF) I broke the record, it would be a bit of a killing your father scenario - or the female equivalent.

There's a really big 'but' here though.

Despite my huge admiration for Seana, I feel as I always do with races of this type, that I'm doing it to prove a point for my friends who have Epilepsy and the incredible people I constantly keep meeting with Epilepsy too. As I've said time and again they are brilliant, physically able people, but individuals who don't fully understand Epilepsy jump to a conclusion which isn't always correct about them and in some scenarios myself as well.

So whenever it may be this year, that I get on the Velodrome track to attempt the record, the only thought in my head will be to try and do the condition justice. 

It won't be an easy feat and it's by far a certainty I will achieve what I'm setting out to do. But if I don't try, then I wouldn't give myself the opportunity to even possibly say:
"The World 24hr Track Cycling female record holder, has Epilepsy."

Tuesday, 12 June 2012

The I.O.U.

I guess you could tell some people until you are blue in the face that they deserve something and they will still feel they don't. I'm ashamed to say I'm one of those people regarding the incredible honour of carrying the Olympic Flame.

But for good reason.

I think people could give you a million compliments about why you deserve to do something, but at the end of the day, you will always have the most honest relationship with yourself. You'll know when you feel you have done your personal best and when you've just done something which seems impressive. For me, my personal best is something which I don't think I have achieved when it comes to raising Epilepsy awareness. Sure I've had to push myself and go through quite a bit of pain previously. But, if I look at myself and what I want and feel I am able to do, I still feel I haven't done it yet.

I don't fully believe in my heart of hearts that I can honestly stand by the statement that, if someone with Epilepsy can cycle across America in a week and a half, why can't people with Epilepsy have a desk job? I say that because I didn't cycle the Race Across America Solo.

I don't know how to even start to repay properly, the work of amazing professionals that looked after me so well as a child and as an adult, to get me to a point where my Epilepsy is controlled.

So as a result being given the honour of carrying the Olympic Flame, feels like an I.O.U. It's not payable to LOCOG, or even Coca-Cola who I was nominated through, it's not binding legally, but personally, emotionally, it is binding for myself.

I'm starting to get a picture of how to repay it though. Some parts will be easier than others, but I think if I can push myself to my true personal best, then I'll feel like a debt is paid and can maybe take the compliments more easily.

The first part of the I.O.U. is easy and I have mentioned a few times before. I'm not ashamed of my Epilepsy, or that I have to take medication to control it, so I'll wear my purple medical band when I carry the Olympic Flame to show I'm proud to be part of an inspiring community of people who also have Epilepsy.

The second part, is the only thing I can think of to say thank-you to the hospital, where I had the surgery that literally changed my life and where I could go with it. So I am planning on taking my Olympic Torch back to the Sick Kids Hospital in Edinburgh, to let the kids in Ward 7 take as many photos as they like with it and let them know that they couldn't be in a better place. I also want to make sure the staff know just how grateful I am for about half a decade of incredible care.

The third and final part of my I.O.U. will certainly be the physically toughest thing I will probably ever do in my life. But I think it's achievable and if I do achieve it, then in my heart of hearts I know I will have done the absolute best that I could have done. I don't want to feel like I could have trained harder, pushed myself more, or didn't take the leap of even attempting the RAAM Solo, even though there is a burden of the financial backing it takes to do it, following you every pedal stroke you take in the race.

For me the press is an easy part of the whole project, but an important one. Awareness is hugely valuable when it comes to Epilepsy and so I would never say no to talking about my condition. But as they say, talk is cheap and I want to feel I can genuinely back it up, because there is a perception about the physical ability of people with Epilepsy I want to try and blow apart.
The RAAM Solo clearly demonstrates that.

So there you have it, that's why I don't feel I'm 100% deserving of what I will do on the 26th of July.

But it doesn't mean to say that I can't repay the people who have identified potential in me to stand by my values and ongoing work.

I suppose at the end of the day if I didn't feel that then I wouldn't have started this blog and they'd be no rubbish banter and attempts at generally pants, vaguely philosophical statements, from the so called Epileptic Ultra Cyclist!

Wednesday, 6 June 2012

2 Years in the making...

2 years ago last week, I had my most recent seizure.

I'm 26 now, I developed Epilepsy at 3 and apart from the 5 years I had seizure free after my surgery, last week marked a very big milestone in that it was comfortably the longest I have been without a single Epileptic seizure.

As you might imagine, what happened after the 5 year absence left a scar of a different kind to that which had caused my Epilepsy originally - I was told to leave the job I loved in the Police and 7 years later I'm still not quite at the point I was then in terms of being able to buy a flat or house because of the London market.

But this time around it's different I think.

What I don't have is the issue of my job depending on if I can drive or not. More importantly, the medication which has created control over my Epilepsy, now two years and counting, don't give me serious side effects that cause me issues with working. Sure, I'm probably slightly drowsier than the average person on the street, but the trick is to get your life in a place where Epilepsy or no Epilepsy, it wouldn't make a difference.
In the same way I don't stand next to platform edges or have baths, I adapt my life to get more sleep, or more coffee, depending on the day of the week!

The biggest thing about the milestone, is that I can celebrate it knowing that even if I did have a seizure, my life would carry on as normal. Quite different to my milestone of half a decade after my neurosurgery, where my job, livelihood and standard of life, all hinged on me never having a seizure again. I guess the most reassuring thing for me is I could have a seizure tomorrow and all I would likely do, is go to sleep for a few hours, wake up and get on with the rest of my day.

Although it was tough at the time to have to start again, I look back and understand far better now just how lucky I am. Because for better or worse, the surgery I had, laid the foundations for the 2 years I have very recently celebrated seizure free.

There is much trial and error with Epilepsy treatment. When you deal with the brain you have to think in generalised terms, it's so complex, you can't look at it in enough acute detail to work out exactly what is going on.

I guess for me it's been 17 years of trial and error and another 6 of no trial at all. From medications as a kid, which were a disaster, to a false start of kinds with the surgery, but something which has dramatically improved my standard of living and now in combination with my current medication, is making my life safer, calmer and most of all allowing me to live a really fulfilling life.

I don't care how much people disagree with me because of the 2 or so decades of bad experience, but I am hugely lucky and have a great debt to pay.

I just feel that having had the luck I have, I've also been handed to opportunity to try and do something with it too. To take the opportunity I've been given and try and help raise new awareness for Epilepsy and new funds for Epilepsy in the UK, because I'm now well enough to do it.

So, I hope, even in a tiny way through my cycling, I can create some luck for even just one other person, out of the 600,000 people with the condition in the UK. 

Sunday, 20 May 2012

What happens when your dreams come true?

I hope my declaration doesn't put any of you off my blog, but I have to say I've had an interesting weekend. Thanks to my dad, I've been a die hard Chelsea FC fan since the age of about 5 or 6 I think, at least a couple of decades, put it that way!
It probably hasn't escaped your notice that my team and fans like me had their dream come true, when yesterday we won the biggest prize in club football, the European Championship, or Champions League to you and me.

After I saw the trophy in the flesh coming down Hortensia Road in Chelsea with the team, I thought, what do we do next? I guess if you're striving for something for so long that is the pinnacle of achievement, you don't really plan what you do after it happens. But then again I guess there is only one thing you can really do.

- You do more.

I suppose for people with Epilepsy, the pinnacle is being cured or completely in control of their condition. So what do you do once you cure your condition? Well you do more.

I sometimes feel incredibly guilty that my Epilepsy is under control whilst others didn't have the same luck as me. But I suppose I'm proud of myself in a way for taking on the Race Across America. I wanted to do it to raise awareness and I did in a small way. I became the youngest British female to ever complete the race across all categories. So what do you do when you have achieved that dream? You aim for more, the first ever British female to complete the RAAM Solo, the first ever female to win the race outright and claim the $25,000 prize which is still on offer for that cyclist.

I guess for Chelsea, there has never been a club in history to successfully defend the Champion's League, that could be Chelsea's new dream. Maybe even to become World Club Champions?

I think one of the reasons Chelsea were successful in winning the Champion's League was because they wanted it, more than anything. I think doing it again is harder, you loose the raw desire you had because it has already been done.

But if something wasn't hard, why would it be worth doing? Why would it be worth the energy and desire to achieve?

For me, my dreams came true when I had my Neurosurgery in the Sick Kids Hospital in Edinburgh.
It changed my life.
The fact that I am now going to be carrying the Olympic Flame in London is just icing on the cake, but I want to do more than just carry the flame. It will probably be one of the most memorable experiences of my life. But in being given the torch after my 300 meters, I want to take it back to the place that gave me the opportunity to take part in my first Race Across America to say thank-you. Because, quite frankly, I wouldn't be carrying the Olympic Torch without the Doctors and Nurses who looked after me in the way they did there.

I feel I can do more with my torch than just put in on my mantle piece. I hope it shows the young kids in Ward 7 of the hospital I was treated in myself, of what could lie ahead for them.

The one thing that keeps my guilt of not being in the situation, that other young people with Epilepsy who don't have their condition controlled or cured in check, is the constant faith that people who are involved with the condition will do more. That scientists will find a cure for Epilepsy, a dream drug or something like that.

If we achieve our dreams, why settle?

There's always a new dream to achieve or something more we can do with our dreams when they come true.

Thursday, 17 May 2012

The legacy of rejection

Legacy is a word which is used a lot at the moment: Olympic legacy, social legacy, legacy wills.
I wonder what legacy rejection leaves on someone?

As someone with Epilepsy, I've experience my fair share of rejection, from boyfriends who don't want the baggage, from school because I was different. Even to the Police who told me I had to resign or they wouldn't state on my paperwork why I was dismissed, rather than properly medically dismissing me because the medical legislation was changing.

But rejection isn't unique to people with Epilepsy, or me, it happens to all of us. None of us are perfect, but I wonder if we're not perfect because we've experienced that rejection in our lives. Maybe the legacy of rejection is that we experience a paranoia to do with something about the way we act? It's very hard to shake.

But maybe there is also a legacy to paranoia:
- self awareness.
It's a silver lining that I think, can, not only help improve ourselves as people, but also give us an understanding and context into the way other people are the way they are.
- The people who sail through life, may be the people we aspire to be, but I very much doubt they have the insight that the people who don't sail through life have because they haven't experienced the same rejection.

But how do we come across our self-awareness though?

Well I certainly don't think it all comes to us over-night, but we might actually stumble across something which clicks with us and makes sense throughout a thread of our behaviour. I guess if we are curious about why we behave in the way we do, then we will come across these things, that eventually build a picture up about why people react to us in a certain way.

Although sometimes it just takes us to communicate with someone, especially those close to us.
My brother told me something recently, which actually made complete sense and was a kind of eureka moment. I'm sure I'll have many more of them to come. I'm sure we all will if we are open to them.

The one thing rejection has taught me is never to judge people for the way they come across. You never know how past rejections or experiences could manifest itself. Maybe it could have left them with a legacy, of a lack of self confidence. Maybe that's the reason why they behave in the way they do?

Whatever the reason for it, we all have a legacy left with us, 'our personal baggage', that makes us who we are. I think for the things we can change, that maybe makes others feel uncomfortable, we should.

It's all very well saying "you can take me or leave me", but how then, do you develop as a person?

Friday, 11 May 2012

"I would run 500 miles"

Given the recent publicity about the recent London Marathon, due to shocking death of Claire Squire, I wondered what is it about people that makes them take time out of their normal lives to train, take part in a challenge and raise money for a cause?

I think it's fair to say that many people do it for the sport, for the prestige and maybe a sense of feeling better about yourself, that you have done your bit for charity in an ever increasing materialistic world. I suppose I would ask, would you give up something like your bottle of wine, fancy dinner, posh coffees or regular beer for a week and donate the money to charity instead? The other side of the coin is the people who donate. Do they do it because their friend is doing something, because they liked a charities marketing campaign, or because they feel they're 'doing their bit' that way?

I would hope that actually while these may be factors, that actually people take part or donate to charity because they are human beings. I suspect in many cases, the true reason people raise money for charity is tragically for reason of love. A death or serious illness in the family, something which has affected the standard of life to those close to them.

I think because we love people, we encounter the worst feeling you can encounter of not being able to do anything to help that loved one. It's very natural then, that as human beings we would want to try and help. Two of the most natural feelings people have in them is compassion and love and without it, we wouldn't be the human beings we are.

Cynics would say, people want to feel a sense of empowerment, that ego comes into many of the challenges people take on. I can't say that's not wholly untrue. In my case I felt helpless regarding the fact Epilepsy charities are underdogs and that they didn't command the presence that a big Cancer charity did for example. I thought the best thing I could do was to be the first woman from the UK to cycle 3000 miles across America officially as part of the RAAM. But the reason I am still planning on doing it and strive for press coverage of it, wasn't so I could become a figurehead. Quite the opposite, I tend to dislike people who show off because they've done something. I wanted to do it, because I was, to be blunt, shit scared one of my friends would die from SUDEP (Sudden Unexpected Death from Epilepsy) and that it could've been prevented if someone had known about the condition and how to deal with seizures.

I make no bones about my ambition to have the attempt documented on television. But it would give me a chance to actually talk about Epilepsy, it's risks and how anyone could help. I'd rather it not be something like RAAM, as the race has it's risks, but if it takes me to do the world toughest endurance sporting event to get the opportunity to talk about Epilepsy, then so be it.

I wouldn't do something with the risks if I didn't feel like I had to, I don't want people to donate to Epilepsy Action or other charities because I died trying, so I'm taking every precaution possible to make sure I'm safe. But there are still people with Epilepsy who don't know about SUDEP and the precautions they should take.

I suppose the I'm cycling to prevent the tragedy that would motivate someone to do something like the RAAM or a marathon, but it's still the love I have for my big brother Phil and my friends like Georgia and Susie that motivates me more than anything to achieve my goal.

I always say, if don't know what you're riding for then it's so much harder to get through the tough periods a race like RAAM throws up.

But I know what I'm riding for, I know the people I'm riding for and when the lactic acid in my muscles really start to kill, that's what will keep me going.

Tuesday, 1 May 2012

Don't settle and live your life your way!

I've realised recently that actually I may write about Epilepsy in a certain way. I think I maybe talk about the stigma a lot, about the barriers, about the side effects of the medication too much. They still exist, true. But one thing I've realised is there's a lot to be optimistic about too.

I guess we don't all need to have an incredible gigantic achievement to tackle the stigma. It's more important just to live our lives the way we want to live them!

One thing I've realised understanding the charities involved with the condition, about the people who are gradually coming forward with the condition, is that they are all incredible. There just seems to be something about Epilepsy that makes people who have the condition or involved with it different.
I don't have a definitive answer why but I have a theory.

I wonder that maybe because the stigma exists, because the charities are the underdogs, that it makes people with Epilepsy stronger as a result? I had a conversation with a sportsman who had Epilepsy and he explained how he had immediate demand from Epilepsy charities to work with them. What came across most was his modesty, he's rare. But it also occurred to me that he was just living his life the way he wanted to live it. His Epilepsy didn't stop him from performing in his particular sport.
He hasn't let it.

I guess the other thing that came out of the conversation was my own feeling of being really in admiration of him, given he was in the public eye and the bravery it took to talk about his condition. I think people with Epilepsy have a real loyalty to people who donate time or finance to the few charities that represent us, because they are charity underdogs given how common the condition is: in the UK 1 in 103 people have Epilepsy.
I'm pretty sure he thought I was a nutter! But I guess I just wanted to express my thanks. (I'm not an Epilepsy ambassador stalker, honest!)

In 2010 for every £200 spent on the Arts Council for England, £1 was spent on the leading awareness and Epilepsy lobbying charity in the UK, the British Epilepsy Association, or Epilepsy Action to you and me.
But boy do Epilepsy Action, NSE, Young Epilepsy and the other Epilepsy charities in the UK punch above their weight. They do so much with what their given. There's a tenacity about them.

I wonder because the condition can be isolating, if we grab onto the little pieces of awareness we get more, the little bits of help more, that we appreciate employers who are okay with our condition that much more?

But as I say, there just seems to be something about Epilepsy. The people I know and have met with the condition seem to all have a common quality about them:

For those who have read about what helped me through the Race Across America, it probably wasn't my fitness that got me through the race, it was that inspiration I talked about. This determination that I seemed to encounter over and over again. A determination to achieve personal goals. I wonder if, because of the feeling I get myself of grabbing on to the inspiration I came across, that I actually felt I was letting this group I felt very loyal to down if I didn't stick with the difficult parts of the RAAM. Maybe it was that more than anything else that got me through the race?

I think the influence of this tight-knit group has moulded me in a certain way and I can't express how grateful I am for that. When you come up against adversity I think there's a human disposition to overcome it. I guess there's just more hidden adversity associated with Epilepsy than normal.

I would never wish Epilepsy on anyone. It's not a condition to be taken lightly and death from the condition does exist.


If there was a silver lining to having the condition it's the constant quality that seems to be apparent in people I know with the condition. I wonder if Epilepsy is associated with the determination gene sometimes!

So here's a thought:
If we hold onto the qualities that we see in people who we see as like us, or represent us, maybe it will rub off and allow us to live our life the way we want to live it.
Funding for Epilepsy charities goes a long way and we should have faith that we will get the awareness and research of Epilepsy that is needed, if the Epilepsy charities continue to work in the incredible way they do now.

I should say that I have a bias here. I recently started work for Epilepsy Action 2 and a half weeks ago. I wouldn't be offended if you took my opinions with a pinch of salt, but I should say that I am 100% talking here from the point of view of someone who's lived with Epilepsy since I was 3, not as an employee of Epilepsy Action and what I say here are my own thoughts and opinions from my own experiences.

It has however given me an insight into an organisation that I genuinely feel privileged to work for. The people in the organisation are amazing, so hard working and incredibly determined. It's inspiring to get up in the morning and start work.

I'm so lucky. I have 3 amazing jobs, my full time job with Epilepsy Action and the 2 board roles that are all my passion. I hope to progress disability sport as much as I can in London through the Herne Hill Velodrome Trust and disability sport equality charity, Interactive. I love my sport and it takes my Epilepsy out of the equation, I didn't settle for something that was an average desk job.
Now, despite being in despair when I had to leave the Police 7 years ago, I feel like I'm living my life the way I want to live it. I took me 7 years, but I'm so fulfilled where I am now.

It just goes to show that controlling your seizures and having an amazing life is possible. It took me 21 years, but I got there. You may loose the seizures with the ever progressing treatment coming through, but you'll never loose the determination from what I can see.

I genuinely believe things will get better, because the people I know with Epilepsy never settled, our charities that represent us don't settle, they're amazing people, they inspired me and I bet you, there will be people who can do the same for you too.
Treatment is improving all the time and I think we can be optimistic about the chances of controlling our Epilepsy, even if it is very severe.

So don't settle, keep determined, aim high, keep the faith that Epilepsy awareness and treatment will get better and above all, strive to live the life you want to live, however that may be.

Dai Greene didn't settle, Leon Legge didn't settle, Laura Sandys MP didn't settle, Paul Maynard MP didn't settle and we shouldn't either!

Wednesday, 25 April 2012

When does someone with Epilepsy stop being someone with Epilepsy?

Hope you all had a good Easter break - as you can tell by the gaping hole in the April blog posts I had a busy one! (Sorry about that)

Something that came up twice recently, from two separate individuals in completely unrelated situations was this idea of someone who wasn't having seizures, but wasn't sure if they still had Epilepsy.
The first was told off for "trying to get the sympathy vote" by saying he had Epilepsy. The other had controlled seizures but the side effects of the medication controlling them had almost as much impact, in this situation it was affecting his work.

It goes to show how complex the whole condition is, even after the seizures aren't there.

So if you develop Epilepsy, does that mean you are Epileptic for life?

I guess the answer lies somewhere in between the individual's medical situation and actually how they want to be perceived.

I'm actually not the best person to dish out advice on this scenario. I thought after my surgery I was cured. I guess that powerful word 'cure' implies that you no longer have a medical condition. BUT, for me, the medical guidelines went out the window along with my police career when I had a break-through seizure, 5 years after my surgery, even though the medical guidelines was that if I was 2 years seizure free, I was cured.
So for me, I'm now 2 years seizure free, but without the medication I take, I would be having seizures. So I consider myself Epileptic, but then maybe that is because for better or for worse, my Epilepsy has shaped my life in a huge way?

I believe people with Epilepsy come out of scenarios that they've had to cope with stronger, but then I would think that because I have Epilepsy!

So here's a question - if you have had to deal with the crap that Epilepsy brings, seizures or side effects from brain damage or medication, can you label yourself Epileptic, or describe yourself as someone with Epilepsy?

Epilepsy can sometimes have a wider effect on people with the condition than just the seizures that come along with it. It can cause anything from social issues like mild Autism, to stammers, drowsiness... the list goes on and on.
So if you suffer these effects I would say that yeah, you could describe yourself as someone with Epilepsy. It can sometimes simplify things, the condition itself is poorly understood, never mind the complexities that go along with it.

But conversely, it's not exactly an advantage to describe yourself as someone with Epilepsy or Epileptic, I certainly don't think it gains a sympathy vote. Sadly there is the opposite effect most of the time.

If your seizures are under control and you're worried a potential boyfriend or girlfriend would dump you if you mentioned your Epilepsy, it's up to you whether you mention it or not.
If you had childhood Epilepsy or surgery, maybe you will have a breakthrough seizure, but then Joe public could equally have an Epileptic Seizure out of the blue too.

Ultimately the answer is that there isn't one.

Sorry about that completely useless bit of advice, but the honest answer is, I think it's completely up to the individual how they see themselves - every case is unique and every situation is unique. You may be happy to say "I'm Epileptic", in one scenario but the next day not mention or even plan to mention it to someone else.
It's up to the individual.

The one thing that is apparent is that medical information is private, but NOBODY should feel like they can't say:

"I have Epilepsy!"

Thursday, 5 April 2012

Bully for you: Lucy's Story

When I met Lucy a couple of years ago through an event to raise awareness for Epilepsy, she was there representing the young persons group she mentors, that discusses Epilepsy and bullying.
After I went for coffee with her, I understood just how much she does for the young people she works with, not just because of the help and advice she gives, but because of the incredible role model she is herself.

The problem with speaking openly about the issues of bullying, is in order to speak about it properly, you also have to talk about the things which maybe you're lest proud of in your life, or sore points. If they weren't, it wouldn't hurt so much when people made fun of them or pointed them out.

For bullies, Epilepsy is like an all you can eat buffet - I should know. When my Epilepsy was at it's most severe, people used to make fun of my seizures too. I've heard of most things, vibrating phones, mocking speech issues, accusations that people should be put in a mental institution, unfortunately I could go on. But some of the stories Lucy had talked about, shocked even me.

The most shocking story of all however, was the one that Lucy told me about her own experience of bullying. She has incredibly bravely said, "I'd rather you published it so people know what we're up against".

This is her story of 5 years of bullying, which started in 1994 until she had to move school in 1998, because it got so bad, her family and dad in particular asked her if she would like to move.

Lucy developed generalised Tonic Clonic seizures age 8 after she was involved in a car accident. She had the seizures approximately once every 3 or 4 weeks. She didn't get a warning before she had them and already had to deal with adapting her life to keep herself safe.

On top of this, she also had her friends turn on her and they began to make her school life a living hell.
One of the boys at her school went as far as bringing a small torch into school and flashing it in her eyes while she was held down by other pupils, as he thought it would induce a seizure.
It culminated in one of her previous best friends, bringing her mum into school to complain about Lucy, saying that she should have to sit at a desk alone as she was a danger to the rest of the pupils.
The school had to ask Lucy's parent's in to discuss the matter because another parent had complained and it was the final straw for her dad.

The amazing thing with Lucy is the way she speaks about the bullies. She hopes they're okay now and that they don't have serious domestic issues they need to deal with or had a tough childhood.

As if Lucy's attitude wasn't astonishing enough, after leaving school, she went to Oxford and gained a 1st Class Honours degree in Psychology.
She explained that she is just thankful she doesn't have to be a young Epileptic now with all the ways online like Facebook or through forums, young people can be an anonymous bully. She says she always learns new things and finds "new inspiration" from the young people she mentors.

The good news is that for anyone who has Epilepsy, Lucy is the best possible example of the amazing things that are to come and that even if you experience bullying, you can have a fabulous life after school. She has so much integrity, knowledge, maturity and intelligence that she could do anything with her life. She is just simply, inside and out a beautiful young woman.

If I would take the advice of one inspirational friend Tanya, to "keep on learning", you can bet the first person I would go to, to learn more about my brain is another inspirational friend - Lucy.

Lucy has recently gone 3 and a half years seizure free after finding a medication that worked for her. She's now driving, working as a Clinical Psychologist in London and is due to get married this summer after meeting her fiancé at university while they were studying in Balliol College, at Oxford.