Nature or Nurture?

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

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

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


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

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

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


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


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

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

Something old, something new, something borrowed, something purple

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

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

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

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

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

...It's misunderstood.

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

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

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


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

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

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

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

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

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


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


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

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


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


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

The risk and then the reality

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

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

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


So for someone with epilepsy, what does that entail?

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

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

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

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


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


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

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.

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.

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.