A Tough Year Only Makes You Stronger

The last month has been somewhat turbulent for someone who relies on stability for their health, but the last few weeks have given me some perspective and hope as to what is to come...

In November by my own standards I was really quite ill, but quite frankly the silver lining for me is that by having a seizure, I realise how lucky I am to have so few. They gave me a glimpse into the life I could have had, had it not been for the surgery which altered the direction that I would travel in the future. The brain surgery I had, now half my life ago.
Not since that surgery when I was 14, have I had two seizures in one week. But last month I did. I comprehensively chewed my lip, the side of my mouth and my tongue on those two separate occasions in a very short space of time, feeling weak as a result and my recovery not being helped by it being incredibly painful to eat food. Even a cup of tea was too painful to drink.

But then I have to think, what if it was like it was before and I felt like this at lease once a month? What if I wasn't as lucky as I had been half my life ago?

I got a glimpse into the bravery, that some people I've met along the journey I started when I was diagnosed age 9, have. I can only understand in part the courage some people have to live a life full of pain, fatigue and danger, of having a seizure at the wrong time or in the wrong place. For me, it puts into perspective any struggle I've had in this past year.
It might have been the year when after a 3 year absence, my seizures were like buses and 3 came along in the same year, but so what? I was ill for about 5 days out of 365, those other 360 I was well, able to work, able to ride my bike. Whatever disappointments I've had on the bike this year, tomorrow is another day and 2015 is another year.


So what of 2015? Well firstly I will start it in a different city than 2014. I've moved back home to Scotland and back to the city I was born in, the city of the 2014 Commonwealth Games, Glasgow.

Despite the last few weeks being difficult and turbulent, there's always a highlight at the end of the year that lifts my spirits. The BBC Sports Personality of the Year. In amongst the montages of the nominees, who show the most incredible skill, power, strength, speed, accuracy, commitment, there was a recurring question of: "What is Sport?" It means different things to different people, but it means more than I can describe, to me, as I've talked about many times before in the blog.

As for my own sport, I've had the heartache of leaving the club, who will always be my team, whenever I talk about London and Hockey. The London Edwardians. Starting the season as the first XI goalkeeper again, in the safest place I could be on earth, on a hockey pitch. I'm proud that I left England playing Surrey Premiership hockey and with my team at the top of the league. I just hope and pray, that after all the hard work the girls put in each week, that they, and the rest of the club can finish in top spot in their respective league.

Coming home I can't help but try to refocus on my cycling however. Maybe I'm not quite ready to join a new hockey club just yet, I still feel like a London Edwardian. So I have my target to get the funding for the Race Across America secured for the team. But there's also another ambition I want to fulfil next year too. The UMCA Larry Schwartz Award, as part of their Year Rounder Competition.
Over 100 miles in a single ride, without drafting, each month, for the entire year.
Of course I want to do it primarily, to raise funds for Epilepsy Action and feel it's significant enough a challenge that it would be worth a donation, but I hope it makes even a little statement about the condition too.

After that, I'll continue to get the club launched properly and hope that 2015, brings better fortunes financially, that will allow Epilepsy Forward Cycling, to start to compete on the national stage.


After all, we're the lucky ones...

I know I don't have to deal with the constant gruelling seizures every month of the year and because of that, I'll start each ride I do, knowing that the pain of the hills and wind in training, the feeling drained from a long ride, isn't a sacrifice...

It's a privilege.

A Question of Identity

I don't normally delve into politics with a large P on my blog too often, but I think it's hugely important to explain why a Glasgow born Brit, has benefited quite so much from the wonderful union of the United Kingdom.
I wondered what would happen to me if I was born into a Glasgow that was the largest city in an Independent Scotland? The scary conclusion I've come to, isn't something I would ever wish for my own children, if it had been the case.

I wondered if I would have been able to have the help of the British Epilepsy Association, Epilepsy Action? I wondered if I would have been able to move and make an impact in the cycling community in London with such ease, if I was a foreigner? What scares me most however, is the idea that the NHS wouldn't have been as strong in Scotland, as it was in a United Kingdom and thus the idea that the utterly life changing surgery I underwent, wouldn't have been able to happen at all?

No matter what the situation, I have never known fear like I used to experience numerous times a day, from my petit-mal auras I went through as a child. Before or since. I can't comprehend a world through my own eyes, where I hadn't lived the second part of it almost totally epilepsy free. But what's more, without the Olympics, there's no way I could have had the opportunity to gain publicity, for the cause of raising awareness of my condition.

What happened to me on the 26th of July 2012, has so far been the single most amazing thing to occur in my life because of how I view sport. I've talked about it before in the blog, but for some reason, it felt only right that I should bring my torch out with me to the 'Let's stay together' rally in Trafalgar Sq, London. Because without being British I believe I would be in a very different, incomprehensible situation. It scares me so much to think about what would have happened if I had not been in the care of the NHS, that I don't even feel I could say it out loud.

I don't believe that any young girl born after next week, who could develop epilepsy like I did when I was 4, should ever not be able to have the truly, utterly, life-changing neurosurgery, that I had. Because the situation where that wouldn't be the case, is unthinkable and having to go through a decade of the condition in the extreme states in put me in, was enough.


But there is another question of identity for me above and beyond epileptic, or a cyclist. If Scotland becomes independent, what nationality am I?

Despite being born, brought up and educated in Scotland, before serving the city of Glasgow as a Police Constable, I can't vote on Scotland's question of Independence. So it confuses me about how I'm viewed and it makes me upset because of this. I have a British Passport, but in London I'd be viewed as being Scottish, even more so if Scotland were independent. Knowing I can't vote in the referendum means I'm being made to feel as if I'm not Scottish enough though?
So who am I? Am I just epileptic? I don't want to be totally defined by my condition, but at the same time, it's the only identity I'm certain of in a world where Scotland and the UK are divorced. It's written on my ID band, so it must be who I am when I no longer feel Scottish enough to have a say, or British enough when I speak to people with my Scottish accent in London.

I'm proud to be born in Scotland, to be Glaswegian, but have the comfort to know, that also made me British too. This country has brought out the best in me, be it living in Glasgow, Edinburgh, Durham or London, I feel I'm a better person for being born into a United Kingdom.

There are a million reasons I could give to vote to stay part of the UK and say No Thanks to Scottish Independence. But I'm just an example of why I'm lucky to be born British. Not Scottish, not Northern Irish, not English, not Welsh, not Manx, not a Channel Islander, but British. So I'm trying everything I can to make sure if there's a young girl born in Scotland next week called Katie and if she were to develop epilepsy like I did, that she have the same amazing opportunities and help, support and treatment, I have had.

So that's why I went along to Trafalgar Square this evening with my torch clad in the Union Jack flag of my Team GB jacket, wearing my Scottish cycling jersey underneath, to join so many other Brits that feel the same way.


What's more, I had some help holding my torch from a young girl in a Scottish football top called Eve. She had an English accent and mother, yet a Scottish father. I was the girl in a GB top, with a Scottish accent and mother, yet an English father.

It was easier to hold the torch with her help...

...Some might even say we were 'Better Together'!

The Investment

I don't think I've ever spent £45 so wisely, but at the same time, paying a graphic designer to clean up the Epilepsy Forward Cycling logo, feels like a massive step. It's a wonder I didn't do it before, but it will mean that the O2 Creation kit that will belong to the club, will now be able to be made. I believe in this team, club and the project as a whole, more than I can say and at the moment, nothing is giving me more heart during my training rides, than seeing the club come together.

I genuinely think that epilepsy has a far better future than it does now and while I don't know how much of a part the club will have to play in that, I do know that people who are proud to wear purple, or the Epilepsy Action logo, will finally have a cycling team to call home.

For the last 6 years I've cycled with other teams, my university, my RAAM team, but I've never felt as at home riding as I did cycling for Epilepsy Action last year. In a huge way, I'll still be riding for Epilepsy Action, with the new Epilepsy Forward team - any profit from the club will go to the charity, with the jerseys able to be bought without people wanting to become a full member and the money generated going straight to the charity. But there's something about riding in full high quality kit, that makes you feel better about your abilities, feel better about your cause.

But there's another reason for the investment...
When the club launches at the end of July, we want to attract strong riders to it, so that the name Epilepsy Forward will be seen in British Cycling's results page. I want us to be able to build a club that can win races and be visible across the UK. It's an ambitious target, but I always think if you don't put your faith in something and go into it half hearted then it will never work. So I want to be able to have everyone ride in high quality kit, because I know that in cycling, little gains matter. If the little gains can make a difference then, it's my hope, that a strong brand which is so much about epilepsy as a condition, will make a positive impact.


Being one of Epilepsy Forward's riders however, also requires another type of investment, in time and sweat, making sure the hours spent out on the bike, will make for a good ride from me personally. It's fine to talk the talk, but riding 12 hours, like I will tomorrow, means commitment and hard cycling. The only way to prepare for my challenge I have set myself for this summer, including 200 mile 12HR rides and a 400 mile 24HR ride, is to put those kind of miles in every weekend. While so far while my training in on schedule, I'm not there yet.

At the end of the day, I just need to keep riding. While a bad workman blames his tools, I know I'll have the best tools possible.


I want to make sure that I'm deserving of wearing the purple kit and Epilepsy Action logo on my back.

Day 7: Just Ask

It's been hugely enjoyable to write the blog for the 7 days during epilepsy week. Maybe this time next year we could be further forward with researching a cure or tackling the stigma of epilepsy. The difficulty with epilepsy though, is it's hard to be able to help those with the most serious forms of epilepsy while at the same time tackling the stigma.

The paradox to epilepsy is that by emphasising it's seriousness and finding the funding for care and cure, you are making it more difficult to tackle the stigma. Likewise, by tackling the stigma, people may think the condition isn't serious enough to warrant raising funds for a cure for the most serious types of the condition. 

Where I feel I can best help is by showing that people with epilepsy can be as physically able as anyone else, because I fall into the category of individuals with controlled epilepsy. So as long as I'm disciplined in taking my medication, I should be seizure free the rest of my life in theory. But at the same time, there is far too many people dying because of their epilepsy and under no circumstances would I ever want to forget that. 

People should deserve to ask for help to stop epilepsy deaths, but at the same time, for those who it's relevant for, they should be able to ask for equal treatment to anyone who has a full bill of health too. Because to a large extent, for those individuals, only in name are they epileptic. 

I made a change recently to the shirts that Epilepsy Forward CC would wear. 

There are people across the world who stand in silence for so many causes, but I've never seen it happen in memory of those who have died from epilepsy. The chances are that far too many will have died this week, so we want to remember and tackle stigma at the same time.

The Epilepsy Forward Cycling shirts are a paradox too. They bear the purple of awareness and their purpose is to be as high end as possible to break world records, under the banner of an epilepsy focused sports team, that pushes any healthy individuals limits to the brink. But at the same time they'll have a black band round the right arm of the shirt in remembrance of all the tragic, mostly preventable deaths that have occurred due to the condition.

The variations within epilepsy are huge. They range from a large number of individuals who are Olympic standard athletes, musicians, lawyers, actors, writers, to the horrendous types of epilepsy that require round the clock care. The chances are that if someone is applying for a job, their epilepsy is well under control, but because many people don't know to ask, they don't realise that epilepsy can be totally controlled. They don't know to ask, how a person who may join their company is affected by their epilepsy. At the end of the day, it's not in the individual's interest to lie about how they are affected by their epilepsy, it could mean that they are put in danger. They also don't want to loose a job, because they have been dishonest about their condition, as it will make it incredibly difficult to find another one.

There is a real need to look at the person, not the condition and if in doubt...

Just ask.

As an end to the #blogaday for epilepsy week, I'll leave you with this thought:

I hope the posts have highlighted the struggle on more than one front, that the charities who work for a better life for people with epilepsy face. You probably know someone with epilepsy reasonably close to you. The stats show that 20% of you reading this will have a seizure at some point in your life. Tomorrow, about 87 people will be newly diagnosed with epilepsy in the UK alone, joining the 65 Million people worldwide with the condition.

If you're thinking about taking on a big sporting endeavour, but not sure who to raise funds for, then know this... 

Choosing an epilepsy charity to raise money for, will make a difference to more people than you could probably know. Texting FUTURE87 to 70500 in the UK, will donate £3 to Epilepsy Action and each country's epilepsy charities will likely do something similar to boost what they can do to help stigma, care and cure. 

At the end of the day, any help you can give, however small could make such a difference.

Day 6: Epilepsy's Mercy

It can be difficult to describe a seizure, sometimes impossible to describe it up to a certain point... How do you describe a kind of fear you can't understand yourself in your own head? How would you describe de-ja-vu that doesn't make any sense and that even seconds after you've experienced it disappears from your memory anyway?
This is a glimpse into the epilepsy I know. I hated it and now that it's under control if feels like being released from prison. It might not be as safe for everyday life, but there's a huge relief from not experiencing the small conscious seizures, called petit mals.

It's hard to try and get across that violent seizures aren't sore, they're not painful and not scary for the person actually having them. But I have a theory and a hope that in explaining what I am in this post, could maybe help the stigma to those that read it.

I can't stop the fact that epileptic seizures that are clonic-tonic grand mal seizures look odd, potentially scary, but I can explain that they're just a part of everyday life. It's incredibly difficult to put your finger on exactly what about epilepsy causes it's stigma, but I believe that feeling like you're watching a person in pain has something to do with it.

If a had a seizure tomorrow, while it would be unfortunate, it wouldn't affect my life adversely. Furthermore, if like previously, they weren't controlled, it would just be another normal part of my life. You see, the one mercy that epilepsy allows its' sufferers is that, you can't feel anything during generalised seizures. It doesn't hurt to have one and post having them, the tiredness that they cause it almost anaesthetic like. The initial pain has gone most of the time, after regaining full consciousness and awareness.

If I had them in bed, they would never effect my life except for maybe a few hours off work if it was money to friday, to sleep off the tiredness. It wouldn't effect my physical capability outside of those boundaries and quite frankly, if I could find an employer that would be accommodating, if like many people with the condition, I had seizures occasionally, then, say I worked later to make up the hours, I'd be as physically and mentally able as any other employee, who had a 100% bill of health.


You see as someone with epilepsy, it's hard to find the route of how to tackle the stigma, but in a way, I hope the knowledge that actually, nobody is in pain themselves during a violent seizure, might go a little way to de-mistefying the condition and the black cloud that surrounds it.

Day 5: Remembering who you really are

I find it amazing how the simplest things give me inspiration for writing these blogs. Tonight it was my flatmate and I, just talking about starting to listen to music again after we felt rubbish for a particular reason.
I remember when I hit rock bottom, during the time I suffered from severe depression due to taking an old medication. It made me feel so bad, I couldn't even find music to fit my mood ...Past even feeling up to riding my bike, I didn't even have the energy to feel sorry for myself for not feeling up to riding it, or even the soundtrack to go along with my misery.

I don't remember a lot about the few weeks before starting having nausea as well, but after that I just took myself off the medication, but only because it didn't control my epilepsy either. I wouldn't recommend it without advice from your doctor.
I remember the day after the day I stopped the medication though...

I walked into class, it was Media in Sport or something. The sun was shining and I pulled my ipod out of my pocket. I went to an old song, that has almost always been my 'happy' song since I was at school, Space Cowboy - 'I Would Die 4 U'.
The people I walked past in the street must have thought I was a nutter. I was smiling away to myself for no reason whatsoever. I was just happy again.

It's hard to explain what's it's like when you come out the other side from dealing with depression, it's like waking up for the first time all over again. Some people have described it to me as shedding a skin, like you're fresh again and I can see what they mean. Others have described it as being like a caterpillar that's been in hibernation and has turned into a butterfly. I especially liked that description, it seemed a nice one, because the thing that came out of the situation with taking my Keppra medication, was that I learned about myself. So in a way I felt like I grew up a little more.

I don't know if it's the way my brain is wired... well I suppose it must be really, but I love music and it really changes my mood a lot of the time.
Getting rid of the Keppra and moving to a different medication gave me a new lease of life and while I don't seem to have strong memories of a lot of amazing things that have happened to me during my life, I do have a very strong one of riding my bike for the first time again after coming off my Keppra, ipod in my ears, listening to 'Halo' by Texas, flying down the hill to my lecture on my bike and feeling like I could take on the world.


I think sometimes we all need something to remember who we really are. It might be something special someone says to you, be it in person or through music, something making sense for you finally, a change of medication even...
For me it was my bike and Sharleen Spiteri singing, "she's so pretty, her hair is a mess...", which is something my mum would say to me! I got a strong powerful sense of happiness from it.


It reminded me of who I really was and I didn't recognise the person who was depressed. I got my mental strength back and without it...

...I don't think I could have got a degree.

Day 4: Show me the meaning of being lonely

When Cassidy Megan started Purple Day a number of years ago now, it wasn't a random colour chosen to signify the condition because nobody else had taken it, there was a message behind it.

Lavender grows in isolation normally and depressingly, many young people with epilepsy have to grow up in isolation too. Not because they don't have friends, but because it's almost impossible for people without epilepsy, to come close to understanding what the condition is like to experience.

It's hard to explain that you've got a short attention span, because your brain is so constantly disrupted all the time, or because your epilepsy affects a part of your brain that it uses for learning skills. It's almost impossible to explain certain types of epilepsy, like my own temporal lobe epilepsy, where the sense of non specific fear is so strong and potent, that you just can compare it to anything, even though you're awake, conscious and can still, with limited capability, talk as normal.

While the statistics show that it's not the case the other way around, there are also a large number of people with learning disabilities, that also have epilepsy. I can't even imagine how they must feel, not being able to communicate in the way they would like, amongst their peers, never mind having the epilepsy to deal with on top of that.

Sometimes you just have to concede that you're alone in your own head with your thoughts and you can't explain them.
Or do you?


In the 21st century, social media has developed as a such a fast rate, it's hard to keep up. And it has major benefits for finding people who also have epilepsy and being able to talk to them. Facebook is a brilliant example, where epilepsy support groups are open and full of conversation about experiences of epilepsy, the medication side effects and generally just confirmation for people, that actually, what they are going through is totally normal and is also happening to other people with epilepsy too.

Young Epilepsy, have for years now run a brilliant school for kids with severe epilepsy, meaning that they can be amongst their peers and get the best support possible, that doesn't patronise, but just helps in their educational and social development.

Epilepsy Action, who are the biggest member led epilepsy organisation in the country, have branches across large parts of the UK, but also run a number of events and even tea and coffee groups. I guess when peer pressure demands that you drink alcohol after a certain age, it's great knowing no one will judge you for having a cuppa instead of a beer.

Epilepsy Society, run the specialist epilepsy hospital in Chalfont St Peter, where it's impossible not to find people going through exactly the same experience as you I think. It's also where I met two of my best friends, Georgia and Susie while I was being re-tested to get my specific epilepsy diagnosis.


I guess your friends are going to be people you can relate to most and that are your peers. I should expect that finding people who are going to know exactly what you're going through yourself, makes for a lot of less isolated life.