Friday 29 June 2012

Tonight, we are young

I think many young people who are at school or even university are in a rush to grow up. On the one hand I can empathise with them, on the other I envy them, as they have a clean slate and the opportunity not to make the mistakes that I made at their age. I think my little sister for example can get higher grades at university, can do more than I did when I was her age, go out more, travel more etc.

But on the other hand, I completely empathise with people who want to get their school and university career in particular, over with. I hated academia, I was never good at it and had the attention span of a goldfish. I loved the sport aspect of being at university, it was the biggest highlight for me, more even than the social side. But when it came to large amounts of reading I struggled as I have my whole life. 
It all stems as most things have in my life, from my Epilepsy and the continuous Petit-mal Auras I had numerous times on a daily basis. 

But I would like to stay in my mid 20s for a good while longer and relish the age I am. It's a point in my life where I feel more independent, feel like I am doing something worthwhile and am enjoying my life outside work too. 
There is an interesting social aspect to my life however that wouldn't be something that someone would expect someone with Epilepsy to enjoy. I am safe drinking alcohol, be it on hockey socials or out with my friends in a club or bar. I also, like the majority of people with Epilepsy, have no issues with strobe lighting, so thoroughly enjoy clubbing. 

I'm sure in my 30s I will look back at my 20s and think I should have done things differently and probably wished I wasn't as keen to grow up. But then I thought, like many people in their teens, that I would be getting married and having kids in my mid 20s. I couldn't even begin to think about that as a realistic idea now I am there, but when I was a teenager I thought my mid to late 20s was fairly a mature and old age. 

How time flies!

It was a big achievement for me to be the youngest British female to complete RAAM across all categories. But again it was also a learning experience.
I think your teens and 20s should be a time when you can be relaxed, eventually settle down be it in work, in a relationship or in life generally, but that you should never wish the time away. I have an issue of looking to far forward to the next thing I will do. Sometimes that's an attribute, but in many cases, I wish I could stop and appreciate the present more. I think if I'm not careful I will spend so much time planning what I am going to do next, that I will miss out on absorbing the amazing experiences I am going through at the moment. 

The irony with many, especially those who had a more difficult young life be it through Epilepsy or something else, is this. If you spend your life wishing you could have done your time at work quicker to be more senior in a job, be older to be able to get married or have kids, get out of a situation like school, by the time you get to the point in your life where it happens, you've missed out on what you did to get there.

There's a great quote from the TV series Sex in the City: "Your 20s are to make your mistakes, your 30s are to learn your lessons and your 40s are to pay for the drinks."

I think it's a great motto to live your life by however I would simply say:

You're only young once: Be reckless, fun, crazy, in love, out of love, energised, make mistakes, be inspired, learn a bit...... you can always grow up later.

Thursday 14 June 2012

24hrs to Tango

So a bit of an update for you all:
In my wisdom, I have decided I quite fancied taking on the female 24hr Track Cycling world record.
- I really am a bit mental when you get to know me!

I don't have the date when I will attempt the record organised yet, I don't have my training schedule sorted yet and the venue (The Herne Hill Velodrome), I will almost certainly attempt the record in, is still waiting to have lighting built for the track. Although luckily for me, the plan is to add the lighting very soon. I suppose it would be no fun if there wasn't a bit of adversity chucked in for good measure.
All I know is that I will attempt the record this year and give it a bloody good shot, and that if I don't leave everything on the track, I'll be mightily annoyed with myself.

I should probably explain that in what would probably be considered my relatively young, Ultra-cycling career, I've had a pretty big idol, Seana Hogan. She holds most of the RAAM Solo female records and up until recently held the World 24hr female Track record when Italian Anna Mei broke the record last September. 
Seana a month ago went 3 miles better with a 444.78 mile record. 

So I will be aiming for Seana's record again.
- Well it'll give me something to do this year!

Not only that, but it's also very good training for the Race Across America in terms of my average speed training. As should be pretty evident from past posts, the RAAM Solo is my ultimate aim, but the nature of Ultra-cycling means there is always a record to try and break.  

I admire Seana hugely, she is a massive icon of the sport. So if (and it's an incredibly big IF) I broke the record, it would be a bit of a killing your father scenario - or the female equivalent.

There's a really big 'but' here though.

Despite my huge admiration for Seana, I feel as I always do with races of this type, that I'm doing it to prove a point for my friends who have Epilepsy and the incredible people I constantly keep meeting with Epilepsy too. As I've said time and again they are brilliant, physically able people, but individuals who don't fully understand Epilepsy jump to a conclusion which isn't always correct about them and in some scenarios myself as well.

So whenever it may be this year, that I get on the Velodrome track to attempt the record, the only thought in my head will be to try and do the condition justice. 

It won't be an easy feat and it's by far a certainty I will achieve what I'm setting out to do. But if I don't try, then I wouldn't give myself the opportunity to even possibly say:
"The World 24hr Track Cycling female record holder, has Epilepsy."

Tuesday 12 June 2012

The I.O.U.

I guess you could tell some people until you are blue in the face that they deserve something and they will still feel they don't. I'm ashamed to say I'm one of those people regarding the incredible honour of carrying the Olympic Flame.

But for good reason.

I think people could give you a million compliments about why you deserve to do something, but at the end of the day, you will always have the most honest relationship with yourself. You'll know when you feel you have done your personal best and when you've just done something which seems impressive. For me, my personal best is something which I don't think I have achieved when it comes to raising Epilepsy awareness. Sure I've had to push myself and go through quite a bit of pain previously. But, if I look at myself and what I want and feel I am able to do, I still feel I haven't done it yet.

I don't fully believe in my heart of hearts that I can honestly stand by the statement that, if someone with Epilepsy can cycle across America in a week and a half, why can't people with Epilepsy have a desk job? I say that because I didn't cycle the Race Across America Solo.

I don't know how to even start to repay properly, the work of amazing professionals that looked after me so well as a child and as an adult, to get me to a point where my Epilepsy is controlled.

So as a result being given the honour of carrying the Olympic Flame, feels like an I.O.U. It's not payable to LOCOG, or even Coca-Cola who I was nominated through, it's not binding legally, but personally, emotionally, it is binding for myself.

I'm starting to get a picture of how to repay it though. Some parts will be easier than others, but I think if I can push myself to my true personal best, then I'll feel like a debt is paid and can maybe take the compliments more easily.

The first part of the I.O.U. is easy and I have mentioned a few times before. I'm not ashamed of my Epilepsy, or that I have to take medication to control it, so I'll wear my purple medical band when I carry the Olympic Flame to show I'm proud to be part of an inspiring community of people who also have Epilepsy.

The second part, is the only thing I can think of to say thank-you to the hospital, where I had the surgery that literally changed my life and where I could go with it. So I am planning on taking my Olympic Torch back to the Sick Kids Hospital in Edinburgh, to let the kids in Ward 7 take as many photos as they like with it and let them know that they couldn't be in a better place. I also want to make sure the staff know just how grateful I am for about half a decade of incredible care.

The third and final part of my I.O.U. will certainly be the physically toughest thing I will probably ever do in my life. But I think it's achievable and if I do achieve it, then in my heart of hearts I know I will have done the absolute best that I could have done. I don't want to feel like I could have trained harder, pushed myself more, or didn't take the leap of even attempting the RAAM Solo, even though there is a burden of the financial backing it takes to do it, following you every pedal stroke you take in the race.

For me the press is an easy part of the whole project, but an important one. Awareness is hugely valuable when it comes to Epilepsy and so I would never say no to talking about my condition. But as they say, talk is cheap and I want to feel I can genuinely back it up, because there is a perception about the physical ability of people with Epilepsy I want to try and blow apart.
The RAAM Solo clearly demonstrates that.

So there you have it, that's why I don't feel I'm 100% deserving of what I will do on the 26th of July.

But it doesn't mean to say that I can't repay the people who have identified potential in me to stand by my values and ongoing work.

I suppose at the end of the day if I didn't feel that then I wouldn't have started this blog and they'd be no rubbish banter and attempts at generally pants, vaguely philosophical statements, from the so called Epileptic Ultra Cyclist!

Wednesday 6 June 2012

2 Years in the making...

2 years ago last week, I had my most recent seizure.

I'm 26 now, I developed Epilepsy at 3 and apart from the 5 years I had seizure free after my surgery, last week marked a very big milestone in that it was comfortably the longest I have been without a single Epileptic seizure.

As you might imagine, what happened after the 5 year absence left a scar of a different kind to that which had caused my Epilepsy originally - I was told to leave the job I loved in the Police and 7 years later I'm still not quite at the point I was then in terms of being able to buy a flat or house because of the London market.

But this time around it's different I think.

What I don't have is the issue of my job depending on if I can drive or not. More importantly, the medication which has created control over my Epilepsy, now two years and counting, don't give me serious side effects that cause me issues with working. Sure, I'm probably slightly drowsier than the average person on the street, but the trick is to get your life in a place where Epilepsy or no Epilepsy, it wouldn't make a difference.
In the same way I don't stand next to platform edges or have baths, I adapt my life to get more sleep, or more coffee, depending on the day of the week!

The biggest thing about the milestone, is that I can celebrate it knowing that even if I did have a seizure, my life would carry on as normal. Quite different to my milestone of half a decade after my neurosurgery, where my job, livelihood and standard of life, all hinged on me never having a seizure again. I guess the most reassuring thing for me is I could have a seizure tomorrow and all I would likely do, is go to sleep for a few hours, wake up and get on with the rest of my day.

Although it was tough at the time to have to start again, I look back and understand far better now just how lucky I am. Because for better or worse, the surgery I had, laid the foundations for the 2 years I have very recently celebrated seizure free.

There is much trial and error with Epilepsy treatment. When you deal with the brain you have to think in generalised terms, it's so complex, you can't look at it in enough acute detail to work out exactly what is going on.

I guess for me it's been 17 years of trial and error and another 6 of no trial at all. From medications as a kid, which were a disaster, to a false start of kinds with the surgery, but something which has dramatically improved my standard of living and now in combination with my current medication, is making my life safer, calmer and most of all allowing me to live a really fulfilling life.

I don't care how much people disagree with me because of the 2 or so decades of bad experience, but I am hugely lucky and have a great debt to pay.

I just feel that having had the luck I have, I've also been handed to opportunity to try and do something with it too. To take the opportunity I've been given and try and help raise new awareness for Epilepsy and new funds for Epilepsy in the UK, because I'm now well enough to do it.

So, I hope, even in a tiny way through my cycling, I can create some luck for even just one other person, out of the 600,000 people with the condition in the UK.