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.

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