Sunday, 16 April 2017

Introducing... Epilepsy Forward

I spend a lot of time at the moment explaining why I started Epilepsy Forward and how I got into ultra marathon cycling. It's not exactly a normal response to a question of what you do as a job to say, "I'm an ultra cyclist". People's eyes usually widen and then ask more.
But then that's the point.

Epilepsy Forward was started because I felt like I needed to repay a debt, and in doing so could possibly, hopefully, make things better for people with epilepsy in the process. But drawing attention to a condition that people usually walk away from, would take something that stood out. It made sense then, that being a cyclist, partly to use as a kind of meditation from life, partly because I made the choice never to drive again, that if I was going to do something that would stand out as a cyclist, it would be ultra marathon riding. I wanted to be able to say that someone with epilepsy could hold some of the toughest cycling records in the world, and in the absence of seeing someone else doing it with epilepsy, felt I could take them on myself. That was the thought back in 2008 riding the Race Across America - to raise awareness, and it did a little, but not to the extent that I could have hoped. In fact it turned out to be more of a platform for honours such as carrying the Olympic flame, and that only reinforced my feeling of debt to others with epilepsy who had inspired me, that didn't get lucky being eligible to have corrective brain surgery.

Epilepsy Forward started simply as a team name for the attempt on the 4 person mixed Race Across America record, which at some point we hope to break in the future. But even as a RAAM finisher myself, I know there's far more to ultra marathon cycling, than simply the Race Across America. Arguably the Solo 12, 8 hour and 100 mile records aren't simply some of the biggest blue ribbon records in ultra marathon cycling, but in cycling period. So that's where the project has evolved to now.

I believe personally, that to change opinions, awareness, even laws, sometimes you have to do something dramatic and headline grabbing, particularly when so little about epilepsy is covered by mainstream media. If it is, it's usually a caricature of the condition, not the people I know that live with the condition every day. I think that side of the condition is easier for people without an understanding of epilepsy not to talk about, because it's complicated and varied. But the simple fact is that, if anything, that's exactly why we should talk about it.

I can't thank the BBC's Adventure Show enough then, to allow me to talk about it, warts and all. Epilepsy can sometimes be massively overcomplicated, but equally incredibly simple too. For example there are large numbers of people with the condition whose only hinderance to them living a normal life is the stigma of epilepsy. There are of course cases where the condition can be extremely complex and involve huge numbers of seizures. But then to me, what doesn't seem complex from my experience, is the bravery of the people who fall into both categories. It's simply inspiring. But like most medical conditions there's a scale of it's severity, both in terms of how the seizures manifest themselves and the frequency of seizures someone with the condition is experiencing and that isn't simple, but should be known about.
While I'm keen to go into more depth in my next few posts about why epilepsy itself isn't straightforward, when trying to assess the impact on someones life, despite it currently, in the most part, all coming under the same extreme umbrella, I'll leave that for another blog.


In introducing Epilepsy Forward properly though, I should talk about the people who enable any of the riding to happen. My crew team.

I may be a Solo rider for the next 12 month's efforts, but there's no way on earth I could do what I'm trying to do alone. The people who make up the crew team are completely extraordinary in every way. From a Coach who as her own incredible story of overcoming major injury to compete at the highest level, as well as major world medals to her name, the magician of a Mechanic or the best Crew Chief you could ask for, to the Utility Crewman, who has his own experience of epilepsy and inspires me in his own way, even if he might not realise it, by teaching me more than he realises.

Each one of them are outstanding in their own way, be it depth of understanding, compassion, ability or incredible knowledge, they all will play their part in pushing towards a common goal. My job, is at least to push myself to train as much as possible and leave no stone unturned, to make sure that I don't let them down.
While a becoming a national record holder in the 12 hour Static Cycling discipline, is a start, I believe that with the help of the people involved in the team, I can do more, which I hope will raise more awareness and challenge the stigma more.


So that's Epilepsy Forward. The project that I hope will not only grow in the future, but in the meantime will push epilepsy knowledge, awareness, research and even propel a bike, forward.

Saturday, 25 March 2017

What Are Your Limits?

So, do I um... cycle? Well yes, just a bit.

I was staggered though at just how rare I was, especially within the Epilepsy Community. This was brought home to me when I woke up in hospital, after my 12 Hour Static Cycling WR attempt. My doctor said to me, very matter of fact, "We don't see people with epilepsy pushing their bodies to the limit like you've done." In fact, I really only know of one other athlete who has epilepsy and would push her body in the same way, which I'm proud to say puts me in lesser achieving, but similar(ish) company to Marion Clignet - The French pursuit cyclist, Olympic medalist and multiple Cycling World Champion, turned Ironman athlete and incredible epilepsy ambassador.

I had, had a seizure. But what was interesting about it, was specifically how it came about.
Sodium is more commonly known to you or I as salt, and through the years of being treated for my epilepsy, along with studying my Sport Degree at Durham Uni, I've understood, that one of the main functions of my salt intake, is to regulate my neurones firing, sending signals to my muscles, when I want them to, and unfortunately, sometimes when I don't.
Essentially, Sodium is your brain and body's electricity. As it happens, one of the major epilepsy medications is even called Sodium Valproate. It's your body's sodium and water balance for example that stops athletes from cramping, particularly during hot periods when we sweat more. You would understand then, that Hyponatraemia would be dangerous for people who have epilepsy, given it concerns low Sodium levels, which is exactly what I was admitted to the Queen Elizabeth University Hospital in Glasgow with.

The care I got there was exceptional, and despite being in a fairly critical condition, needing my Sodium levels brought back to normal, then suffering a secondary issue with a Creatine Kinase level which was 1354, rather than the normal range of 25-200... I was left with no long term health issues as a result of my sublime treatment.
To one of Scotland's most experienced and senior sport doctors, Dr. John MacLean, who helped me inside the SCROPS show, to Dr. Christian Delles and his team, Dr Johnpillai, Dr Bogie and the rest of the ICU staff, I can't be grateful enough.
What one of the ICU doctors said next however, not only took me completely by shock, but took my breath away. Dr Johnpillai, who had explained how rare a case I was, turned to me and asked if he could use the data they had gathered from the incident, to go towards research?

Of course, to end up in hospital isn't how you raise positive awareness of epilepsy, it does the opposite. But then again, if it hasn't been done in the UK before, then how can we learn? A terrible experience with a crew in 2008's Race Across America, is how I knew how to build a great crew for events like the Track Cycling WR attempt still to come. Sometimes it's from the worst experiences that you learn the most.
As I say though, being seriously ill, isn't going to help the stigma, and for safety reasons, now we know I'm physically able, we've revised the original 24 HR WR Track Cycling attempt, to a 12 HR ride, attempting the 12 and 8 Hour World Records. I may want to push my limits, but I don't want to push my luck. That would simply be irresponsible and not remotely helpful to others with epilepsy.

Going back to Dr Johnpillai's request... to learn not simply for my own benefit, but instead potentially be able to help the people who inspire me who have epilepsy too, to be safer... well it was a no brainer. I of course said yes.

By the end of the ride, I hadn't broken the Guinness World Record 348.0km, I realised I might have done something more important.
I had pushed the physical limits of the average person to what we understand is the second greatest distance ever recorded by a female on a static cycle - 340.04km. Not only that though, but knowing the potential of the research that we could use what happened for, means more to me than a certificate. To show what people with epilepsy can do, and maybe even try to help them get better to allow them to do it as well, and safely, for me is huge. I'm extremely proud, to have met the team in the QEUH Glasgow's ICU, never mind help with their research.


But of course, this is my annual Purple Day post and I couldn't let it pass without mentioning something else that happened over the summer gradually and eventually, and in the most incredible way, during the 12 HR Static Cycle attempt.
The reason (or one of them), International Epilepsy Awareness Day, is called Purple Day, is because lavender grows in isolation. A purple flower which grows alone - the same kind of feeling of being alone, that's caused when something is so incredibly hard to describe, that you can't explain it to anyone else but the 1 in 100 people like you. Particularly when you could walk past someone else who is that 1% and has epilepsy too, not even knowing you share a common bond.
But when I was at the Sick Kids Hospital in Edinburgh to be treated, and during activities I've taken part in through Epilepsy Action, I've been made to feel less alone, because I've been with other people like me. People who look completely normal and healthy outside of a seizure, and can experience such a spectrum of horror within the seizures, like Petit-mal auras. But ultimately people who understand my epilepsy like nobody else can.

When I began to think of myself as disabled, I found it incredibly liberating because I wasn't in the limbo between not looking disabled, but my health saying otherwise.
This happened gradually over the summer as I've explained in previous posts, through the Paralympics and their inspiration, as well as that of the athletes. I can't begin to describe the feeling then, to feel encouraged by stars of that community, when our Gold and Silver Paralympic Tennis medalist from Rio, Paralympic Champion Gordon Reid, Tweeted me, to "Keep smashing it!" or one of my biggest inspirations, Baroness Tanni Grey-Thompson Tweets "Well done Katie". It gave me an amazing sense of belonging to a very special group of people - athletes with disabilities. I realise that while I'm no Paralympic Champion, I can be a proud disabled athlete. (Even if I can't quite 'smash it' like Gordon Reid.)

And that, well... makes you feel less lavender.

But then something else happened too. What was incredible during the ride, was the realisation that through on the day donations, I had already surpassed my original fundraising target before the track ride, and have amazingly, had to revise it!
As I write this, the kids in Ward 7 of the Sick Kids Hospital in Edinburgh, my old ward, will be making friends and finding inspiration for the rest of their lives there, and Epilepsy Action will be putting into action all their plans for a day of purple, so that even as someone walks along the road tomorrow, they will hopefully pass someone wearing purple and not feel alone.
That to me, is worth cycling for.


So there you go, that's what happened a fortnight ago, the issues it threw up and the incredible opportunities it presented as well.
Even if you can't donate to either of my charities, maybe as you get up in the morning, you could try to wear something purple.
And if you would like to donate, here's the link:
http://uk.virginmoneygiving.com/Katies8HRand12HRWRAttempt

....Oh, and happy Purple Day! 

Saturday, 4 March 2017

Are We Nearly There Yet?

You'll probably agree with me, when I say that I think I might be going slightly mad, due to the fact I'm starting to take some enjoyment in playing with my cycling pain barriers. I can agree with anyone that says that this is definitely not normal! I can reassure myself however, that I'm also doing this to learn exactly what it is, that means I'm not thinking about the pain of riding any ultra-marathon distance.
I know that because of my likely side effects that I have as a result of my medication, that I'm not exactly an Olympian physiologically. I know that's not where I gain my competitive advantage from. It's in the way I think. And luckily, it's most prominent in the ultra cycling disciplines that the competitive advantage from strong psychology is felt.


My first learning point I have found the more I ride, actually makes total sense to something entirely different, that I think almost all of us have experienced young and old. Long journeys. It's what I like to call the 'Are we nearly there yet?' effect.
Put simply, distracting myself away from thinking about the specifics of riding, how long I've been riding for, how long I've got left, actually makes me feel less pain in my legs and the rest of my body. Distracting myself from what I'm doing entirely and riding on autopilot, seems to make my brain not engage with riding pain and it's particularly something that I can employ as a strategy during the 12 Hour Static Cycling WR attempt on the 10th of March. For other races, the scenery can be distracting. But even trying to think about something completely away from anything to do with the ride, does wonders for that feeling, that time is flying by.
It now makes sense to me, why, when I was a child in particular, long journeys where I did nothing but stare out the window and at most listen to music, meant long car journeys like Glasgow to the Isle of Skye, felt like they took an absolute eternity. It's apt then, that as I write this, coming back from my physiological testing at the Human Performance Unit in Essex, on the train from London to Glasgow, I've just realised that 3 hours have passed and I don't know where they have gone. I haven't looked at the time or been paying much attention to what station we've stopped at, but it's 3 hours into the journey already and I'm about 2/3rds of the way to Glasgow.

I don't know for sure, but I think in essence, what's happening to me, is that I'm just hitting a steady level of pain that then becomes normal and once I've got used to it, my head is free to wander and pass the time more quickly as well as not focusing on pain.


The second aspect to what helps my riding psychology, is that I know, that if I only do something for myself, I'd quit earlier than I would if I was riding for a team or a cause. So the fact that I'm representing a group of people, who I identify so closely with, I know will make my riding stronger and makes me more determined. Maybe even completely bloody minded about refusing to quit.
What that equates to, is in those little moments when your body hurts, you push that little bit harder, or don't drop a tempo, even if you might want to.

What affects this, is the little stories I've stolen for myself, from meeting some of the most remarkable people you'd ever hope to come across in your life. These are my friends and fellow patients alike, that have been through a far harder journey than myself with their epilepsy, but being the most graceful, erudite, generous people you could meet, despite their epilepsy. My friends Georgia and Andrew for example, far surpass my intellect, both with Law degrees and they never cease to continue to inspire and amaze me in equal measure. The patients I was treated with, continue to ground me with their courage, dealing with sides of epilepsy I didn't have to. They push me to even conceive of where they find their courage to deal with what I didn't, whenever I think about them. Incidentally, they also push me to try and be more courageous too, in other ways.


That brings me onto the last aspect of my riding psychology when it comes to ultra cycling. I've already tested my mental breaking point, during the Race Across America, and I didn't break. But there's a very good reason I didn't and it means that someone will have to literally drag me off my bike before I don't finish any ultra cycling race. To put it simply, even if I fail, I'll do it by finishing the time I was supposed to ride for, or make sure I just get to the line at the end of the race, if it has to come to that.

How this works, it extremely straight forward. I have a hell of a reality check when it comes to feeling sorry for myself and it goes back to those 5 years I spent in the Sick Kids Hospital in Edinburgh, between the ages of 9 and 14. I can only begin to explain how lucky I feel to be one of the eligible 5% for corrective brain surgery for my epilepsy. The fact that on top of that, even when I was having about 4600 seizures a year large and small, but that in Ward 7 I didn't feel ill, I hope demonstrates how remarkable some of the other patients were and still are in Ward 7.
It's a hell of a thing to think about in retrospect: A young man and a fellow patient in the same ward, incredibly poised, funny and dignified, while at the same time being wheelchair bound, wearing a seizure helmet, due to the severity of his epilepsy. I can't fail to think of him when I need to put things into perspective. So while he was such an awesome guy in the way he conducted himself, what he was dealing with was huge.
He was wearing a seizure helmet, while I wear a bicycle helmet. I can only think to myself, that since I have the opportunity to raise awareness for how to deal with his, and my own seizures, I should grab it with both hands. It's the only way that I can repay him, for the debt of using his inspiration to dig myself out of a psychological hole, by keeping riding and challenging the stigma that we both experience.
In case anyone asks, that's exactly why I still feel a debt of gratitude I need to repay and why I feel finishing RAAM isn't enough to repay it.


So there you have it.
While my medication may put me back more training hours, it's actually the fact that I have epilepsy and belong to the epilepsy community that is my competitive advantage.

It's quite literally, all in my head.

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.

https://petition.parliament.uk/petitions/168490/sponsors/wmsUjs1qKiiIE4dkYlV

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: https://www.justgiving.com/Olivia-Salvati 
...at 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: https://fitforpurpose2016.wordpress.com/ ...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.