To Aspire...

I think to aspire is to do something great. It doesn't matter how big or small our dreams are, but to be able to have a dream and to aspire to achieve it, gives us meaning. I sometimes wonder if the one thing, the one luxury taken away from people who want for nothing, is that they don't have the excitement, the trials, the tribulations, the agony and the ecstasy, of endeavouring to achieve even the smallest dream.

I suppose I say that, because I wonder, like most people do, what it feels like when you achieve all your dreams? I wonder even if you can say, what a dream even is to aspire to and what would just be merely a target to achieve? Well, I suppose it's incredibly personal, I suppose the more you have achieved, the less you have to aspire to and one persons dream is another's nightmare - take children for example. I suspect that there are many women to aspire to reach the top of their dream profession. I think there are many others who dream of spending as much time as they have watching their children grow and helping them flourish.
I certainly would think that in order to aspire to a dream however, you have the ability to make it happen yourself, or at least, contribute to making it happen.

I'm not sure I could write this post, in the context of explaining this properly without mentioning one of the greatest dreamers of modern times. Not an athlete, but a preacher in the USA, Martin Luther King. I supposed what he aspired to, was so incredible, that when he said: "I have a dream..." he aspired to achieve it by galvanising people of any race into action. He did achieve it.


My dream isn't as big and I certainly don't think is something I can aspire to achieve myself. It doesn't mean it is less important than another dream though.
I dream that one day people with epilepsy will be looked at as equal to someone who doesn't have a disability in a job interview, in life, that people would know if they saw an epileptic seizure and know what to do when they saw it.
The specific aspiration for the next few years is that I will achieve the honour of being the first British woman to finish Race Across America Solo, that our Mixed 4 team break the Race Across America record and that I am able to break the women's track cycling WR.

But dreams change too.
If I achieved all of those things, I don't think I would be as happy as if our cycling club, Epilepsy Forward, grew into something that people, even if it was just in the cycling community, recognised, respected, was aware of and that the riders would go on and show their abilities on the national, maybe even international stage.
I think the biggest aspiration I have in my life is to help create even something as small as a sports team, but one that was strong and encompassed more people that had the same dream as me.


I guess then, what we dream for epilepsy is a big dream to aspire to after all, but if many people have that same aspiration to achieve it, then it is won't seem quite as daunting.

...and maybe one day we will make it happen.

One New Groupset and a Big Gear Change

As sporting metaphors go, bicycles and the stuff that drives them are fairly rich pickings. Yesterday the object most dear to me because of what it gives me in return, my bike, essentially had a major organ transplant, with the first full groupset change I've made in about 10 years.
For those not familiar with cycling terminology, the groupset includes everything from the chain and all it comes into contact with, to the brakes and the levers on the handlebars. As a result, even with constant maintenance of the old one, my riding is smoother and more efficient than it was this time last week.


The Epilepsy Forward Cycling project however, has been a bit of a different story. It's a good job I have a new groupset, because we've just made one hell of a change of gears.

Since this is after all, a diary, it made sense to document what was happening with Epilepsy Forward and disappointingly, the Race Across America plans - the Mixed 4 Team record attempt and following Solo attempt, have been put back a year due to funding. Cue a drop from the larger of the two big gears on the crank.
There has however been a slow ramping up of the smaller gears to fill the gap in my 2013 summer personally and for the team, or rather, project... (more on that later!) a big step.
I had always planned to ride the London Ride 100, to raise money for Epilepsy Action at the start of August, however, as of yesterday, it won't be just that I'm training for. I've finally taken the plunge and entered the British 24HR TT Championships which take place in late July. Something which I've been planning to do for years, but never quite got round to be able to train properly for.
The hope is competitive training for the British Championship should make for the 6 hour target for the Prudential Ride London 100, a very achievable target, just 2 weeks later.


Among the disappointment of having to put back the Race Across America plans a year however, there is excitement for Epilepsy Forward in general. A new step in another direction, but a very logical one.
Charities like UK Youth have shown that cycling can raise the profile of a charity hugely and since the whole objective of Epilepsy Forward was to raise the profile of the condition, it seemed like a no brainer to affiliate as a British Cycling club. It means allowing people who share the same values as we do, to race under a team epilepsy focused, have the condition feature in the British Cycling rankings and race results, but most importantly, allow people to meet each other and be able to ride together.

The likelihood is that for any other team however, raising their profile would be the main, sometimes only objective. In the case of Epilepsy Forward CC though, it could do so much more than that.
The club has the ability to tackle the issue of the isolation that comes with the condition, it has the ability to raise funds for charity and not only that, but for new members to British Cycling, give huge financial security if the very unlikely event occurs that a seizure could result in an accident, through membership of the National Governing Body. The club has the ability to promote the use of medical ID for it's riders, irrespective of if they have epilepsy or not. It could facilitate first aid training for members, so they know how to best help anyone they come into contact with, should they have a seizure.
But most of all, even just through the colour of the kit, it will hopefully give the members a sense of pride about the shirt on their back.


You often have to take a step back before you can take a step forward, but I strongly believe that as a rider I will become stronger and as a project we've become more ambitious.

At the end of the day, the team side of the project can make a dent, but the club arm of Epilepsy Forward has the ability to create a legacy.

How do you solve a problem like Epilepsy?

To say the major epilepsy charities across the world and here in the UK, like Epilepsy Action, the Epilepsy Society, Young Epilepsy and others, have an up hill battle, is really quite a major understatement.

I was watching an advert for an appeal to raise funds for children's cancer cures and the power of the advert is something to behold. It's a very simple and dramatic message: "With your money you can help make sure that no young child should die from cancer".
The issue for epilepsy is we could still say: "With your money you can help make sure that no young child should die from epilepsy", or more specifically SUDEP. But that's not even half the story, yes young people die from SUDEP, but it spans a massive age range. Yes, it's a terrible condition that some people have to face, but the issue it throws up by saying that, is you create even more of a stigma for the people who live without severe epilepsy, but still suffer from it none the less. They actually suffer far more from the stigma of their label attached, forcing them to hide their condition and more seriously, put themselves in danger by doing so.

So how do you say: "With your money, you can help end deaths from epilepsy, you can help end the horrible suffering of isolation and the pain of epilepsy, you can help end the stigma of epilepsy, you can help inform everyone of how they can prevent injury from seizures", in a simple 60 second advert?
The answer is you can't take an example like 'young John' with his big brown eyes staring at you longing for help and cover all the bases, of the issues epilepsy throws up.
...The issue is you can only scratch the surface.

The other issue is the reason you don't see these kind of adverts scratching the surface of epilepsy, during your ad break between the first and second half of Coronation Street, is frankly, because of issues facing epilepsy stigma. It's not a common condition someone would choose out of the blue to donate to, so to put it simply, epilepsy charities could only afford to do advertising like this in their wildest dreams, unless something changes.


We have some celebrity supporters and notable individuals who suffer from the condition, but not in the same quantity we could have because of the stigma.

So the only thing I would ask is this:
If you get to finish reading this particular post, share it with someone else and ask them to share with their friends... try and encourage them to choose us. Epilepsy is still a Cinderella condition and trust me when I say, for those who do choose to get behind the cause of epilepsy, for whatever charity...

...there will be millions upon millions of people worldwide, who will be more grateful than you can ever imagine, than you did.

Who do you think you are?

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

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

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

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


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

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

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

A Purple Heart

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

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


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

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

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


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


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

Good Drugs / Bad Drugs

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

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


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

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

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


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

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

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


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

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

Back to square1 - but what is it?

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

But yesterday was different...

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

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

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

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


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

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


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