Wednesday 12 October 2016

What Are You Here For?

Having heard some of the stories of PTSD experienced by incredible Ex-Servicemen and Servicewomen from the Armed Services, to see the drive of Olympians and their training, be it to simply become one, or to win titles for their nation, I wondered if the most important thing in life, is to know what you're on this earth to do? What are you meant to do in your life? What do you want your purpose to be?

I can't help but think that if you feel you have a purpose in life and are fulfilling it, it would make you're life incredibly rewarding. Of course this doesn't need to be as glamorous as becoming an Olympian, or as dramatic as serving your country on a battlefield, or in my own case, aiming to break records. It could be something as simple as feeling that you've become a great mother or father, or that you've helped someone in your life through the charity of becoming a volunteer. I think if you feel you have a purpose in life, you should never let that go and focus as best you can in achieving your purpose.

Of course your purpose can and probably will change in life, and with it can come a vacuum of the lack of purpose. Conversely however, you can also fill a vacuum too. You can become satisfied with a sense of achievement, a sense of having made an impact or a difference.

I think many people struggle in life, when they find themselves feeling like they haven't achieved enough, that they can do more, that they can contribute more and I know I may be a bit guilty of that myself. My sense of unfulfilled purpose comes from the burden of debt I feel from my life being changed beyond recognition and the fact I know there's still work to do to tackle the stigma of Epilepsy. But maybe as long as you can get to a point in life where you feel you've achieved your purpose, that could be a good thing? Maybe that's what achieves change and progress?

Of course things may present themselves to you, because of disability as well. It can make you realise where there are inequalities, or even opportunities. As the Olympians took their bow in Rio this summer, it was the turn of the Paralympics to take centre stage. There were many highlights of the Games themselves and of the surrounding coverage too, but one moment stood out and made me think. When Channel 4's Alex Brooker talked about the incredible quote of Alex Zinardi's, it made me realise, that how epilepsy had disabled me, had also led me down a path to my cycling, that it wouldn't have otherwise done, had I not had the break through seizure 11 years ago. Zinardi talked of a blessing, and while epilepsy has its challenges, the condition has given me a purpose and that to me, is a blessing.

I have friends who are affected with the condition in a very similar way I am, and while we could live pretty normal lives, there are barriers of a lack of legal protection, of a lack of understanding, that combined with how my own epilepsy disables me, meant I ended up as an Ultra-Cyclist. For the first time, I understood, through Alex Zinardi's words, that being disabled from driving, gave me the gift, not only to fight Epilepsy stigma, but specifically, to do it on a bicycle. Previously, I didn't think of myself as being disabled, but I realised this summer through the Paralympics that I am disabled from doing certain things through my epilepsy, but that I should never be ashamed of that and instead embrace it. So far, through RAAM, through century ride after century ride, I have and the reason is that I have an opportunity to make a statement about certain hidden disabilities, including my own.

More than anything, what I want to demonstrate through the WR attempt over 24 hours, that this idea, that someone would need a driving licence because they have to travel to meet customers, or to go to meetings, is a dud. Even charities which hold themselves in the highest standards in the UK are using a loophole, to discriminate against my disability and others, either through planning, or simply thoughtlessness. It's lazy and the simple fact is that these employers could be missing out on some of the most talented potential employees they could hope for. That's why alongside the ride, I'm aiming to challenge the fact there is no law in the UK from preventing employers from adding an essential requirement for a Driving Licence, even when the role only involves business travel. It's abused and I hope by cycling over half the distance from one end of the UK to another in a day, that it's also completely mad.

I'd encourage anyone in the UK that believes in it to sign in and hopefully together, we can change the law and the vacuum created in my life that was left, when I had to leave the Police because, legitimately I couldn't carry a firearm on my belt, in my CS Spray, wasn't created for nothing.

Friday 10 June 2016

The Power Of Equality

It has been a historic week, for history making women. Queen Elizabeth II turning 90, or Hilary Clinton becoming the Democratic Candidate for the 2016 US Presidential elections, they've managed to make gender irrelevant. Admittedly, the progress within the Queen's lifetime, has been that of a first born of either gender, becoming first in line, to be the Head of the Commonwealth, but her service has shown that the old rule of the first born male is obsolete.
The second historic development gives us the possible break-through in political history, of the first woman to become the most powerful elected representative in the world and it's looking strongly, like Hillary Clinton, could be the first female President of the United States, in the country's long history of major break-throughs. After breaking the race discrimination rules up, to where they rightfully should be, this final glass ceiling is starting to be smashed blow by blow.

Of course, theses great moments of equality are still rare. I had previous interest in politics, but throughout my own journey have realised that you don't have to be in a position of power to make a change. Epilepsy Forward will always be about trying to find a new way to challenge stigma, or to show by example the abilities of people with epilepsy. After all, the core belief everyone has, is that someone with epilepsy should be judged by the person they are outside of their seizures, not to let the seizures define that person instead.

But not having to focus time in politics, has meant that I have more time to dedicate, to my Ultra Cycling and specifically the 24 hour Track Cycling World Record. I have an ability at least in the UK, to set a record which will be genderless because an indoor track record for the UK hasn't been set.

Of course, the silver lining to any set back because of gender, race of disability, is that I believe it only makes you more determined to succeed.
But the strongest motivation as always, comes from inspiration, from the amazing people I have met along my journey, far, far greater than the 460 miles I hope to travel in a day in July 2017.

The idea that the British record full stop, would be held by someone with epilepsy, I hope is another axe, to throw at a far too thick piece of glass above our heads.

Wednesday 25 May 2016

What's Another Word For Inspiration? (Part Two)

So you know I said in Part One, I'd prise Liv's nomination story from her... Well she doesn't know this, (although she may do now), but I didn't have to look very far to find out just what an amazing young woman I was sitting next to. A simple Google search did the job - more on that later.

The one thing that was a brilliant addition to the event, were the presenters. From the cream of UK acting talent, to the cream of our commentary on the cream of UK acting talent. I can't say that it wasn't a little distracting having Steph and Dom from Gogglebox directly in my sight line up to the presenters, but when it was their turn to present, it was genuinely moving to hear of their own experience with the condition, through their son.
The presenters ranged from Beauty Queens, to Comedy and Shakespearian actors, but the one presenter that stood out was a young man in the form of Owen Thurston. He might not be a household name, but incredible in not only helping judge the event, but judging from the position of being awarded the previous year at the Champions Awards in 2015. Quietly determined and self assured, Owen is the kind of guy that you hope any young man will grow into and he's an incredible inspiration to anyone who knows his story. A fundraiser and awareness raiser extraordinaire, he's exhibited the kind of self assurance that someone way beyond his years would struggle to muster. A Rotary Outstanding Young Citizen award winner as well as an Epilepsy Champ 15', he's still only 17.

One thing I know far too fortunately, but more than most though, is that without the medical research to treat our condition, we wouldn't in many cases be able to do the things we do to raise awareness and fundraise doing what we do. Without surgery, I would still suffer 12-15 petit-mal seizures a day and 2-3 grand-mal seizures a week. We're incredibly lucky that we have people who want to make progress with the treatment of epilepsy and they should always be commended.
Treatment however, doesn't always come purely in the science of drugs and treatment of epilepsy in isolation, but the other issues it creates as well. I've talked before about the depression I suffered as a result of taking Keppra, but had I been under the care of Dr Sophie Bennett, it would have been picked up a lot earlier that there was an issue with medication side effects. Sophie is not only treating patients, but further studying for her for PhD at the The Institute of Child Health at UCL as part of the Population, Policy and Practice Programme. Her work is anything but a 'Doctor, Doctor' joke though, she's developed a new way to screen patients in order to assess and treat any psychological issues that our condition so often throws up. She recently published the only review of psychological treatments in children with long-term medical conditions (including epilepsy) to international acclaim. Thankfully she's spreading her good practice wider than just study and training those around her in her treatment of epilepsy as well.

The Inspirational Young Star awards within their respective age categories showed though, that education around epilepsy doesn't stop at study and further education. 12 year old Holly Lumsden, was teaching her own classmates about epilepsy, presenting ideas for her own app for the condition. Something Apple should take note of I would think. But she disclosed her diagnoses of epilepsy so bravely in the process. With the stigma still existing, this takes far more bravery than some would think, especially in the age where social media can be used as a tool for bullying, Holly is looking to take a different approach with technology.
James Bletsoe's approach to his condition, takes more low tech means to get across his intended impact, but it's no less powerful. In fact, what James did, was so powerful, it has meant the start of a Foundation in Art course and an interview for Cardiff University, to study there, despite school being difficult for him and on top of everything else, he had a misdiagnoses of his epilepsy as autism. What James does is far beyond just being conventionally smart, taking his seizures and using them to create incredible pieces of art. I'm sure I speak for everyone when I wish him luck with Cardiff and just hope I can afford one of his pieces if he ever put them up for sale!
Emily Donoghue took the means of words in her awareness raising, not only contributing to globally recognised 'Living Well With Epilepsy', but also writing a blog and now book, to help people make sense on the condition. She's not planning to do this as an exercise in personal income generation however, but rather to raise funds for epilepsy charities. It's clear to see how inspiring it is when she has various different types of seizures, yet is still so open to talking about epilepsy and advocating for people with the condition. As a blogger, her story is particularly inspiring to me personally, to feel that an impact can be made through blogging about our condition, however I'm not quite at Emily's level yet.

And so I come to what was the final award of the night. The Bravery Award. There were three shortlisted nominations which after I heard, I was rather glad I wasn't in the position to have to judge the winner.
Firstly, brother and sister Tiegan and Xander Gill, age 10 and 7 respectively. Their mum Savannah's epilepsy you would think would be frightening for any child to deal with, let alone seeing their mum in such distress. But the kids are so well equipped to deal with it, that they know straight away to phone their dad James if their mum has a seizure, and in the case that they couldn't get a hold of their dad, they would calmly activate the community alarm in their house. Past that, they've even administered Savannah's emergency medication. When I was their age, I could just about make a paper aeroplane and almost keep my Tamagotchi alive, never mind perform crucial first aid to anyone, let alone adding the stress of it being a loved one.
Next imagine the worry you feel about your child starting education of any form away from home for the first time with epilepsy caused by a structural brain abnormality. The worry it must cause for any parent I can only imagine being horrific. But then think if your child, in this case Samuel Owens, had a guardian angel to explain to everyone around him what's happening and to sit with him and reassure him as well. This is exactly what Samuel has in the form of his twin sister Anneliese. But to put this into perspective, Anneliese and Samuel are only old enough to be at nursery school. It's no wonder Annelise's parents were brimming with pride for their daughter. She shows the maturity level of someone ten times her young years, which I can only emphasise by explaining she was the youngest nominee of the night.
Then there was 9 year old Ruby Barnes. Just wow. By this point I was really glad I wasn't having to judge the category, then I heard the story of Ruby's life saving bravery towards her brother, who was in his pram with Ruby's mum Ellen, when they went to pick her up from school to go to Ruby's Grandmother's house. Ellen suffers from epilepsy though, and on that day she had a seizure, next to one of the busiest high streets in Bolton's city centre. Ellen lost control of her baby son and Ruby's baby brother's pram which rolled towards the oncoming rush-hour traffic. Yet 9 year old Ruby, ran back to catch the pram and her brother before it fell into the road, bring it back to her mother who she sat with and reassured as she came round from her seizure, phoning her grandmother to explain what happened and to come and meet them. Diving towards traffic is something most people wouldn't do, never mind Ruby's age and what was happening around her.

I remember thinking how on earth were the panel going to decide who would win the category. But the wonderful surprise at the end of the night, was simply that they didn't and all four of the nominees won the award jointly. 

My special ending happened when I looked for Liv's story online. Partly because my friend Andrew, who's a constant source of inspiration for me, Law degree and all, couldn't make it to the event. I met him through our condition and he never stops inspiring me the way he gets on with his life, even after serious seizures. He's never stopped battling to get a great job and he's got one. But as I later found out, Liv was also studying Law too. I get the impression she's very much like a young version of Andrew, but what really choked me, was that alongside the battling against bullying and comments about her epilepsy, people acting towards Liv as if she's given an easy time if she's ill, alongside the incredible amount she's raised for Young Epilepsy and her work as an ambassador for them, it turned out that not only is she studying Law like Andrew did, she's also doing it at the same University - the University of East Anglia. 

And so you know, Liv's page is here: the moment as I write this, she's nearly hit her £2000 fundraising target. I think we can help her get there and push past her target, because if the Young Epilepsy staff and the Young Epilepsy Champions Awards are anything to go by, it's an incredible charity and it's an incredible cause.

Monday 23 May 2016

What's Another Word For Inspiration? (Part One)

Picture the scene, you're sitting on your bed on the Megabus Gold Nightbus (other operators are available), trying to get your head around an event full of the most inspiring people you can think of that are linked to epilepsy. The Young Epilepsy Champions Awards.
The simple fact is, I can't really, or at least not simply in one blog, so I'm going to enlist the help of Liv, who I had the absolute pleasure to sit next to for the night, to get her perspective on things. I should also say that Liv was a nominated for these awards too, however she was too modest to tell me her full story, but I promise I'll prise it out of her!

Before I had even arrived I felt part of the event, which was because of my epilepsy and not despite it. My outfit's accessories weren't picked to match a particular bag I had, or what was the on trend colour of the season, rather to match my purple medical band. To put this into perspective, most people think I just like the colour purple, but the fact is that it signifies, amongst other things, epilepsy. I'm never ashamed to wear the colour, I'm proud to wear it. The reason for the pride though, is that I belong to a community of people that aren't, "different", or "disabled", they're amazing.
So how can you sum up the cream of the crop when it comes to this incredible group and wider community of people that constantly inspire me? Well, with difficulty and hopefully with help.

There were many special moments about the night, even as I came in I met Daniel and his mum, who had nominated his teacher for her incredible approach to his epilepsy. But he was really very special too. Dressed in his full national formalwear, from his flashes on his socks and waistcoat, to the kilt itself, he had a speech ready that he had hand written stored in his sporran, should he need to accept the award. He did, and the 'My Champion Award' went to his incredible teacher Kate Frodshum, who made a 6 year old Daniel empowered, not it seems, to simply feel more confident about letting her know when he is having a seizure, but also to blossom into a confident and fast learning young man, catching up with his classmates academically, while at the same time leaving behind anxiety and insecurity, as a pupil at St Paul's Primary in Glenrothes.
When you're dealing with even petit-mal seizures during your lessons, while nobody may know you're experiencing them, you simply can't stop them from sucking your attention onto them, so school can be so difficult for young people with epilepsy and that one teacher can really change the prospects of a child with epilepsy. But as with education in general, people easily forget that this can change a young life, well into their future. If Daniel is being helped to catch up with his peers, who knows what he can achieve in the future given the support he has had from his teacher Kate.

There were more awards, for people close to my Glasgow home as well. Scott Barclay, who's story was simply remarkable, won the 'Supporting The Community Award'. It was remarkable in so many ways, not only because he's brave enough to talk about his epilepsy to others, as an advocate and campaigner - a campaigner effective enough to get HOVIS, to change their brand colours for purple day in 2016, but on top of that he runs his own support group and answers questions on social media, giving advice about epilepsy. When he stood out from the crowd though, that was a harder endeavour, because he very literally had to do so, after a seizure which broke his back. Scott didn't just re-learn to walk, he did so much more on top of that. I suppose it just shows you can't keep a good man down. What was particularly touching too, was his thanks he gave to his husband, for his support and never judging him by his epilepsy. Something so easily done by so many, which was rightly noticed in the shortlist for a few of the nominations. It seems a rather cruel irony that our Patron Saint would be St Valentine.

There was nothing remotely cruel or ironic about the winner of the 'Best Practice Award' however. Kirsten McHale, had gone far beyond her job description. So many people rely on the support of our army of specialist epilepsy nurses, but what Kirsten did though, was to simply take that idea and run with it, far enough to comfortably finish a marathon. Organising meetings with fellow Epilepsy Nurse Specialists, for peer support and advice, sharing best practice through experience, taking her own time and using it to get young people with epilepsy together, allowing them to share their experiences, to make new friends and ultimately helping to stop the loneliness so associated with epilepsy, when we're young. Lavender grows in isolation and has an association with epilepsy because of it's colour for a reason. What Kirsten did, amongst other things, was to help bring kids with epilepsy out of that feeling of isolation. It's difficult for me to explain the seizures I had as a child, and I'm an adult. So without common experience, it's almost impossible for children to understand what you go through unless they've been through it themselves, which is why making those links and friends, can be so life changing.

Given talk of marathons, I should also mention Luke Davis, who was also sat next to me. A incredible marathon runner, who had forgotten to mention he'd raised almost £1700 for Epilepsy Research UK, if you include gift aid. Again a lot of modesty I suspect, but if he won't mention it I will, because he's a fantastic blogger and if you don't believe me, go to: ...oh and don't forget to donate after his marathon. I don't say this lightly when I say, I'd literally rather cycle round the world, than run one!
Part of the brilliance and inspiration of the Champions event, was that you couldn't turn and speak to anyone without being inspired in some way, I couldn't sit down without being inspired by the people sitting next to me. As the night went on, I was more and more touched by the whole thing, it was incredible in so many ways and I'll continue that tomorrow...

So as not to turn this blog into a marathon though, that's it for Part One, but it's certainly not the end of the inspiration from the event, oh no, there's still plenty of that to come I can promise you...

...with a really rather special ending to the night and blog as well.

Monday 2 May 2016


I believe each of us craves some sort of purpose in our lives. Who are we going to be? What were we put on this earth for? Why did something happen to us?

...Why did epilepsy happen to me?

I obviously know the answer to the last question. My epilepsy was caused by a febrile convulsion, it caused a scar on the right side of my brain and the rest is medical history. But what I've always wanted, since my brain surgery, since my epilepsy re-emerged for reasons nobody can explain, is to understand if I have a purpose as someone with epilepsy. I wonder sometimes if I should walk away and leave the riding to someone else? But then if every person with epilepsy thought that, we'd never ever make progress to tackle the stigma. Better an army to fight it, than a lone soldier and I don't want to leave anyone else to become that lone soldier.

I received some incredible news last month, possibly a real chance for me to shine a light on my condition while raising funds for it at the same time. I have a venue, a velodrome on my doorstep in Glasgow, Scotland, where I will attempt the Women's 24HR Track Cycling World Record, next July 2017. A real ability to say: "If someone with epilepsy holds with Women's Track Cycling 24HR WR, then why the hell can't someone with epilepsy hold down a desk job too?" My aim is to push past a potential employer's limits so far, that they won't be able to dispute that people with epilepsy are able. Because we more than are.

But I hope I'm not a lone soldier either, which is why I've come to the conclusion that Epilepsy Forward, could, as a brand, as a charity, go far further than just me and a bike. A British Cycling Club perhaps? Why not branch out into other physical challenges? Why not attempt to start a movement?

The message the Epilepsy Forward project is trying to get across is more powerful the more people with the condition join the team. If we end up getting a movement of people smashing the epilepsy stigma, then it stops being a one off. Eventually I hope, it becomes an undeniable message:
"We are able."

So with a project that has potential, I hope that people will join me in taking on the responsibility to grow Epilepsy Forward, into new epic challenges that push people with the condition's limits, across all areas of life. Many incredible people had epilepsy. Many incredible people have epilepsy. They get on with winning awards, world titles, the hearts of fans, Prince was a fine example of that. So to anyone wondering if their epilepsy will ever stop them being amazing think on this. From my experience with every person I've met that has the condition, they already are.

And if you're keen to help get involved with Epilepsy Forward, or know someone who might be, especially if you're in the UK where the charity will be registered, please get in touch!

Sunday 6 March 2016

What of Inspiration?

There's a chance, that after months, even years of trying to find a venue to be allowed to attempt the Women's 24 Hour Track Cycling World Record, it might finally be close to being secured.
It started me thinking though, that if what I've been given isn't false hope to ride, therein begins a second phase of struggle. Training with a full time job, riding at home, even while eating, would all become part of a year's training for an event if I'm honest, I'm petrified to fail at.

The ride itself, is then another animal altogether. I can fail to secure a venue, then push and push to overturn that. That isn't failure, it's just a set back. I could be turned down for sponsorship over and over, but it only takes one or two to say yes to get the finance I need secured. That's not failure either, it's simply a numbers game. I'm used to fear yes, but not the acute fear of failure, just a simulated form through my epilepsy I experienced on what was almost an hourly basis throughout the day, before surgery. There is however a difference now though. While I still have epilepsy and will never shy away from the label of the condition, I don't experience the fear auras I used to, I don't have seizures that I'm unaware of what's happening to me 2, 3 times a week, but maybe once, twice a year. The fear of failure, is something I can overcome by thinking myself out of it, whereas the epilepsy I had, I couldn't. But it leaves me with the question of what do I use to think myself out of the state of fear?

The irony in the answer is that the very reason my own fear is a luxury, is grounded in what helps me overcome it in the first place. I'm in such an privileged position. I'm able to ride when there are a huge number of young people who are in the position I used to be in, experiencing fear they can't think themselves out of. But from those who I spent time in hospital with, from those who I have visited since, their courage has been what has inspired me before and it's their inspiration that makes me less afraid of failure, because I know that their inspiration gives me an edge as a cyclist.

Sometimes the luckiest people in the world, are those who truly know how lucky they are.
I'm far too lucky.
It breaks my heart and brings me to tears sometimes to think of the 95% of people with epilepsy that weren't eligible for surgery. I can never fully explain, what it is exactly to experience a Right Temporal Lobe aura seizure, it's worse than any fear or pain I have ever experienced in my life, both physical and mental. But at the same time, I can't use them as a way of explaining what the seizures are like either. So I'm put in another very privileged position, of having controlled epilepsy, being able to talk about it, but also being able to ride a bike. I can use it to highlight the issues with the condition and the stigma, which brings me to my conclusion about my fear of failure.

The real answer is that my fear of failure is irrelevant. I can't fail and I won't. For every person affected by SUDEP, that I will have a black band round the right sleeve of my kit representing, I won't fail. For every kid that has to explain their condition and how to help when they experience a seizure, I can't fail. But most of all, for every job interview I can feel being judged in for having epilepsy, for everyone who has experienced the same, for every seizure I have experienced, as a child and since my condition re-occurred, for every single 19 out of 20 kids who aren't eligible for surgery, I will train myself until my body is so ready for the event, that I'll be able to say that the record is held by a person with epilepsy.

There's a simple reality to my situation in that the inspiration I can use, is far more powerful that any pain I might or could feel riding in training or during the attempt itself, be it in Glasgow or somewhere else. Because the difficulty I face in setting up the attempt and completing it, is nothing in comparison to the incredible, amazing people that I have met along my journey that started when I was 4 years old after a febrile convulsion.

My journey likely won't end even if I do eventually break the 24HR record, but instead when, and only when, I feel I have done all I can to tackle and break down the stigma of epilepsy and raise awareness for a catastrophic aspect of the condition which is entirely preventable.