The Power of Love

Mid November... the time of year for early Christmas adverts, romantic late autumnal scenery, walks in the park and past Christmas number 1s being prematurely played in department stores.

Like Valentines Day, a joy if you're in a relationship... not so great however if you're not.


Along with the discrimination at job interviews, one of the most common side effects of a lack of epilepsy awareness is when it comes to relationships.
But I suppose for somebody without epilepsy, why would you take on the baggage of the condition? The learning how to deal with generalised seizures, getting used to seeing someone take potentially multiple tablets to control their condition every night... nah, too much hassle!

...If you're reading this thinking: "WHAT! THIS IS RIDICULOUS, HOW DARE SOMEONE THINK THAT ABOUT ME?!" Then you're right. They shouldn't.

If you're reading this thinking: "WHAT! THIS IS RIDICULOUS, HOW DARE SOMEONE THINK THAT ABOUT ANYONE?!" Then you're right... and there's light at the end of the tunnel.


In international cities like London, I think it can be worse sometimes. There's a fast and loose culture of finding the perfect person and I suppose when there's so many single people in the one place, I can understand why someone would be freaked out and move on quickly, because you're not 'perfect'. But it doesn't make what that person did right.
I'm happy to be open when I say that many of the relationships I've had in the past have been easier because my boyfriend at the time had a link to neurology, or had a medical condition himself, so they weren't phased by my epilepsy. But I've also had that look when I've got round to explaining about my condition... or the dreaded text that night, or the next morning. It's horrible and it's unfair, but in a funny way, it has a silver lining to it as well.

For every arse - male or female, who can't deal with the fact you take anti-epileptic medication, or that there's a chance you could have the seizure, there's the good guy or awesome girl, who isn't shallow enough to look at you as a label. In a way, disclosing your condition is a very quick way of sorting out someone who isn't worth wasting time on.
I generally take the opinion that people with epilepsy can be brave, resilient and more sensitive. So why wouldn't someone want to go out with someone as awesome as you?

The biggest thing to remember though is this:
Not explaining what to do if you had a seizure, or worrying about wearing your medical ID, could be dangerous for you. So not only are you making sure you're going out with someone worth your time, but you're keeping yourself safe too.

Above anything else, you have to think about yourself and your own safety first. It's never worth it to take a risk because of a group of people who are shallow and will likely end up worse off than you in terms of a relationship.

You're awesome and that means every part of you, so you should never be ashamed of any of it...
...it's what makes you, You.

The other side of the same coin

While epileptic seizures can be difficult to deal with, for those with very infrequent or mild seizures, there can sometimes be an incredibly difficult choice in trying to control them.

Rationally, people around you, your family, friends, doctors, will probably always believe that not having epileptic seizures is the most important thing to achieve. But there's sometimes great consequences to that too. The condition is difficult to tackle the stigma of, because seizures look different and feel different for different sufferers. Some people have more frequent and longer seizures than others and as a result not only does that mean that people who come under the same umbrella of epileptic, aren't treated differently when they should be regarding the stigma, but the medication they take is totally unique too.

People are usually a bit confused by how I could have had a part of my brain removed and remain the same person I was before. But the reason I was eligible, the reason I was so lucky to be one of the 5% that was able to have neurosurgery, was because it was a part of my brain I didn't use for daily functions.

But it's still my brain and it's still bloody complex!

It would follow then that people would have completely unique reactions, or even none at all to medication. But what happens when you finally find that right medication to cure your seizures, but the side effects seem worse than the epilepsy itself?
One of the drugs I took changed my personality more than cutting part of my brain out. Keppra didn't work with me, or my brain. It caused me severe depression, aggression and nausea, and it left me wondering if having a tonic clonic seizure every year or so was a better option?
Thankfully I didn't have to make that decision when coming off the drug. It didn't make a blind difference to controlling my epilepsy, in fact it probably made it worse. But having said that, it could be the miracle cure for someone else with absolutely no side effects at all and I know of many friends where that's the case. We have totally different make ups and so one person with epilepsy will always react differently to another, you have to experiment before finding the perfect, or as close as you can get to the perfect anti-epileptic drug.

But then it's not to say that the medication I'm taking now couldn't eventually have an impact on my normal daily life too, the drugs also can change their effect on someone over time.
Side effects of anti-epileptics can be as diverse as memory loss and confusion, to insomnia or weight loss. So when does the epilepsy itself become a better option and how do doctors know what drugs you should be on?

I guess the first lesson I learnt after the Keppra episode to address this, is be aware of what is normal for you and to never, ever, be afraid to go to your GP, Consultant or Specialist to say, I don't think this is working. You're not an inconvenience and never will be, so make sure you take it on yourself to make sure you demand the best care you can get. If you're a parent, then it's on you to do the same if your child has epilepsy and can't be assertive for themselves because they're too small.

The second lesson I learnt, despite people being shocked when I asked them to do it if I ever had a seizure, was ask them to grab their phone if I was having the seizure and film it. If like me, you have infrequent seizures, it could also be an incredibly rare opportunity, to help with the best diagnoses a medical professional could make, because they're able to view the seizure themselves.
It's not crude to film a seizure, it's informative in the best possible way for the individual's doctor, in helping narrow down the search to what medication will cure their seizures. It could also mean that it could cut down on having to suffer needless side effects for a medication which doesn't have a positive effect in curing their seizures too.


Ultimately, medication is extremely specific to an individual. But they should never settle for something which means they have to suffer in order to control their epilepsy either. Medicine is always evolving and there's always new drugs to try and see if it will impact on them in the best way possible.

When it comes to the other side of the coin, our heads are really important and we should always make sure we don't settle for the small change of anti-epileptic medication side effects.

The Check-up

It's been a couple of months of stress, ups and downs (in lots of cases literally), disappointment and achievement, but above all reinforced something which I've believed in the whole time...
People with epilepsy are more than capable of being cyclists too.

A friend of mine who has epilepsy too, was actively told by her doctor very recently, that she shouldn't be cycling at all. Fact is she cycled more than 300 miles for charity and was fine, with proud parents waiting at the end of her ride to congratulate her.
Even myself, I feel liked people have wrapped me in cotton wool in their heads, not quite approving of the riding I was doing and amusingly, being rather surprised when the biggest obstacle I had to overcome wasn't my epilepsy, but a torn back muscle (and a high speed crash) to finish a ride for the incredible Epilepsy Action... more about that later.

But the fact is, that over the last 2 months, I've clocked more than 1750 miles, over half of the Race Across America in training and 2 races alone and been totally epilepsy free.

The first, was heartbreaking, not to mention almost backbreaking. On the 20th and 21st of July, I spent a large amount of time riding with shooting pains down the right hand side of my back and down my leg, half a day to be precise, as part of the British 24HR TT championships. I'm a rookie and to be honest, it was such an incredible learning experience that I'd never take back my experience doing it, even if it did tear my Iliocostalis and cause me constant pain. But it was important for another reason too... I was doing it in aid of Epilepsy Action. I was gutted not to complete the ride, but it turned out to be a lucky move to DNF, as if I hadn't I'd likely have done such bad damage to my back, I'd have needed surgery.

The second I was seriously worried about, two weeks after the 24HR ride, wearing my Epilepsy Action colours front and centre, there was no way I was going to let myself not finish a ride wearing the charity's logo, colours and name. But it was a touch and go ride, I had fairly intensive sports massage to get me into a state where I could ride the Prudential Ride London 100 miles. I had targeted 7 hours with the injury, but after crashing about 70 miles into the race, ploughing into the barriers of a corner on a down slope cut back after being cut up, I just wanted to finish.
For the last 30 miles or so, my left foot pad was numb, right quad bruised on the inside and left tricep and deltoid shot from landing shock to the muscles most likely. I limped home, but more importantly I finished. Being a beneficiary of the organisation from the Epilepsy Action Events and Fundraising team a distinct advantage, as I knew I was coming home to a massage, or rub down at least and for most if not all of the last 25-30 miles, that carrot helped me home.

I'm not quire sure how, but the hills I was so worried about I didn't even get off my bike for, the stretches at the start I was able to pace perfectly so I had the energy in my legs as the race dragged on, and in the end I finished comfortably inside my revised target of 7 hours, in 6 hours, 46 minutes.
My mission now to hit my target of raising £1000.00 for Epilepsy Action, through: http://uk.virginmoneygiving.com/KatharineFord


I guess some could argue that I did myself damage because of the rides, I did, I can't deny that... I needed intensive sports massage and physio for goodness sake! But did it affect my epilepsy adversely?

The short answer to that question is no. The slightly longer answer is actually it did the polar opposite, I've never had better general health in my life.
Every now and again I need to have a check-up with my GP to make sure everything is fine with my Anti-Epileptic medications. I have some regular things taken like blood pressure and pulse rate etc. It turns out after the training, riding and racing, my pulse rate was 56bpm. Not bad for someone with the stress of deadlines for moving house, packing and daily work to focus on.


Not only do I think this epileptic is capable of being a cyclist, I think it's made me a lot healthier and probably kept my seizure threshold raised, during the stress that's happened over the last months or so...

...even if cycling can be a pain in the neck, or rather back, (possibly both) sometimes!

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?