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.
Sunday, 6 March 2016
Monday, 21 December 2015
The Season Of Hope
While I know Christmas can be seen as a time of spending money, of crazy sales, of excess, I also know it as a time of love, generosity, but most of all, of reflection.
A decade and a half ago now, I became one of the 5% of people, that was lucky enough to undergo brain surgery and it completely changed my life. But 15 years is a long time and the advances in technology have changed massively and the potential to control or cure epilepsy has only gotten greater. I can only say, to anyone with epilepsy, don't lose hope that it can be controlled.
Recently I became part of a new network of people with epilepsy, one that shares stories and knowledge, experiences and set-backs as well as advances. It's difficult to hear of people struggling with the side effects of their medication, because through the years since developing the condition age 4, and since being diagnosed age 9, now 20 years ago, I've had my fair share of anti-epileptic medication, side effects. While it may have taken 2 decades and a number of years of experimenting and medical support, I've finally found a combination of medication and previous treatment that has meant I have almost completely controlled epilepsy, with no medication side effects. I know first hand that there is light at the end of the tunnel. I don't really know any different in my life, but one thing I have learnt over 25 years, is that epilepsy, doesn't control your life if you don't let it. I have made a decision to make sure that I only take the positives from my condition, like the resilience I have and inspiration I had gathered from others with the condition, from over the years.
What I hope for next year, is to show how the best of myself, moulded from my experiences with the condition, will help show some of the best of British sport. It's still very much my ambition to break the Women's 24HR Track Cycling World Record. I hope that I'll find the support I need and a venue that believes in what I want to achieve, not so much for myself, but for my condition. I've said it before, but I'm not ashamed to have epilepsy, people get ill, I just get ill in a way that is less familiar to a number of people. It's a vicious cycle if a stigma is fuelled by a lack of knowledge and that lack of knowledge is fuelled by a lack of people talking about their condition because of the stigma. I'm just lucky that I found cycling and a way to do something so extreme, that people in good health feel that even they, wouldn't be able to take on the 24HR WR. I know many of my friends have been treated like they were China dolls, that they were breakable or less physically able because of their epilepsy, but I feel I can smash that myth. Not only that but I also want to show that the set-backs the condition has dealt me, has made me more mentally strong than the average individual, like I know my friends with the condition are too.
I'm hoping for a lot with wanting to really tackle the stigma of epilepsy properly. But like the people that are constantly developing new technologies and medication to try and control the condition, if I don't at least try, I'll have no hope at all.
To everyone who has been touched by epilepsy reading this post, I sincerely hope that 2016 is the year you find that perfect medication, or treatment, or that you find a way to help to tackle the stigma. I hope that you all have as happy and healthy a 2016 as possible.
A decade and a half ago now, I became one of the 5% of people, that was lucky enough to undergo brain surgery and it completely changed my life. But 15 years is a long time and the advances in technology have changed massively and the potential to control or cure epilepsy has only gotten greater. I can only say, to anyone with epilepsy, don't lose hope that it can be controlled.
Recently I became part of a new network of people with epilepsy, one that shares stories and knowledge, experiences and set-backs as well as advances. It's difficult to hear of people struggling with the side effects of their medication, because through the years since developing the condition age 4, and since being diagnosed age 9, now 20 years ago, I've had my fair share of anti-epileptic medication, side effects. While it may have taken 2 decades and a number of years of experimenting and medical support, I've finally found a combination of medication and previous treatment that has meant I have almost completely controlled epilepsy, with no medication side effects. I know first hand that there is light at the end of the tunnel. I don't really know any different in my life, but one thing I have learnt over 25 years, is that epilepsy, doesn't control your life if you don't let it. I have made a decision to make sure that I only take the positives from my condition, like the resilience I have and inspiration I had gathered from others with the condition, from over the years.
What I hope for next year, is to show how the best of myself, moulded from my experiences with the condition, will help show some of the best of British sport. It's still very much my ambition to break the Women's 24HR Track Cycling World Record. I hope that I'll find the support I need and a venue that believes in what I want to achieve, not so much for myself, but for my condition. I've said it before, but I'm not ashamed to have epilepsy, people get ill, I just get ill in a way that is less familiar to a number of people. It's a vicious cycle if a stigma is fuelled by a lack of knowledge and that lack of knowledge is fuelled by a lack of people talking about their condition because of the stigma. I'm just lucky that I found cycling and a way to do something so extreme, that people in good health feel that even they, wouldn't be able to take on the 24HR WR. I know many of my friends have been treated like they were China dolls, that they were breakable or less physically able because of their epilepsy, but I feel I can smash that myth. Not only that but I also want to show that the set-backs the condition has dealt me, has made me more mentally strong than the average individual, like I know my friends with the condition are too.
I'm hoping for a lot with wanting to really tackle the stigma of epilepsy properly. But like the people that are constantly developing new technologies and medication to try and control the condition, if I don't at least try, I'll have no hope at all.
To everyone who has been touched by epilepsy reading this post, I sincerely hope that 2016 is the year you find that perfect medication, or treatment, or that you find a way to help to tackle the stigma. I hope that you all have as happy and healthy a 2016 as possible.
Friday, 23 October 2015
Paying It Forward
I had an incredible night of even just 2 incidents last night, they made me feel so bright, but mostly just bright about a little spark of kindness I was privileged enough to experience when so many things are happening in the world to make anyone feel down.
I was traveling back from my induction week for my new job with social enterprise Localgiving and needed to grab a taxi for the short journey to Victoria Coach Station in London, because of my bags. I was travelling to Edinburgh on the night bus and was chatting with the my taxi driver a little about what I did and where I was going on the sleeper bus. When we arrived at the station I realised I had very little change and so had to give the driver a £20 note. He asked if I had a fiver, but I apologised and tried to rumble around to see if I could work out something with the change I had. Instead though as I was counting 5 and 10ps, the driver handed me back my £20 and simply said:
"You go and get yourself a nice coffee or something for your bus journey, this one is on me."
I was stunned really and didn't really know what to say except thank-you of course, but I wondered why me? It was such a lovely gesture and I didn't quite know why I deserved it. Then on the bus, the driver who was the same one who drove me down from Scotland, gave me a spare pillow on the packed bus, just because it was there and it left me thinking 'why me?' again.
As my friend Celia pointed out to me however, I should pay it forward and I couldn't agree with her more. I've spent the day doing anything I can to do just that. I always think helping a mum with a pram on stairs is something everyone should do, so any time I see someone struggling with a pram I'll offer to help and I did so today in the train station in Edinburgh, then made sure an elderly lady didn't leave without her brolly off the train she almost left, given it was raining quite so much in Glasgow this evening, to which she thanked me, but she really didn't need to. I suppose if everyone paid it forward, the world would be a great place.
The biggest piece of luck, care and the best gift I have ever been given for free though, was my brain surgery that changed my epilepsy beyond belief on the NHS. It was such a huge gift to be lucky enough to one of the 5% eligible, that it made me think, "could I ever really pay that forward?" I wonder then if that's why I don't feel I've done enough to deserve to carry the Olympic Flame, but I'm so glad I paid that forward by gifting the Torch in trust to Ward 7 in the Sick Children's Hospital in Edinburgh. I hope, for the kids to take selfies with, or use apparently as the milestone for children re-learning to walk to at the end of the corridor. But it will never really be enough in my eyes, so I'm going to try and keep paying it forward by raising money and challenging the stigma of epilepsy through my cycling and anything else I can do frankly.
As for the the five pound taxi fare, well I did get a coffee, but it was out of my own pocket...
...the taxi fare has been match funded by me and inspired by the driver, has been donated to the London Taxi Drivers' Fund for Underprivileged Children.
I was traveling back from my induction week for my new job with social enterprise Localgiving and needed to grab a taxi for the short journey to Victoria Coach Station in London, because of my bags. I was travelling to Edinburgh on the night bus and was chatting with the my taxi driver a little about what I did and where I was going on the sleeper bus. When we arrived at the station I realised I had very little change and so had to give the driver a £20 note. He asked if I had a fiver, but I apologised and tried to rumble around to see if I could work out something with the change I had. Instead though as I was counting 5 and 10ps, the driver handed me back my £20 and simply said:
"You go and get yourself a nice coffee or something for your bus journey, this one is on me."
I was stunned really and didn't really know what to say except thank-you of course, but I wondered why me? It was such a lovely gesture and I didn't quite know why I deserved it. Then on the bus, the driver who was the same one who drove me down from Scotland, gave me a spare pillow on the packed bus, just because it was there and it left me thinking 'why me?' again.
As my friend Celia pointed out to me however, I should pay it forward and I couldn't agree with her more. I've spent the day doing anything I can to do just that. I always think helping a mum with a pram on stairs is something everyone should do, so any time I see someone struggling with a pram I'll offer to help and I did so today in the train station in Edinburgh, then made sure an elderly lady didn't leave without her brolly off the train she almost left, given it was raining quite so much in Glasgow this evening, to which she thanked me, but she really didn't need to. I suppose if everyone paid it forward, the world would be a great place.
The biggest piece of luck, care and the best gift I have ever been given for free though, was my brain surgery that changed my epilepsy beyond belief on the NHS. It was such a huge gift to be lucky enough to one of the 5% eligible, that it made me think, "could I ever really pay that forward?" I wonder then if that's why I don't feel I've done enough to deserve to carry the Olympic Flame, but I'm so glad I paid that forward by gifting the Torch in trust to Ward 7 in the Sick Children's Hospital in Edinburgh. I hope, for the kids to take selfies with, or use apparently as the milestone for children re-learning to walk to at the end of the corridor. But it will never really be enough in my eyes, so I'm going to try and keep paying it forward by raising money and challenging the stigma of epilepsy through my cycling and anything else I can do frankly.
As for the the five pound taxi fare, well I did get a coffee, but it was out of my own pocket...
...the taxi fare has been match funded by me and inspired by the driver, has been donated to the London Taxi Drivers' Fund for Underprivileged Children.
Wednesday, 12 August 2015
Freedom From Convention
To varying degrees, life, the way society is structured, our laws and processes, all to some extent limit people with disabilities, and particularly in my experience with epilepsy. It's a frustration that almost every single individual who has epilepsy lives with on a daily basis, and probably for the rest of their life. Even individuals like myself and my friends, are still prevented from doing jobs, not obviously an issue for someone with epilepsy, because of organisational 'convenience'. To say it's frustrating would be an understatement. Constantly told that you can't even apply for a role is hugely demoralising, because it's human nature to have a role in life.
If you can't express yourself through your career, then how do you express yourself in a valued way?
I find it interesting that art is considered 'a therapy' for people with disabilities. But the reality is that it could be far more that just a therapy, the next great artist could be disabled and creating incredible paintings. They need the tools and the conditions to do it in though.
I believe everyone has an aptitude in some way, but it's not obvious when there's processes in place that value certain aptitudes in life and smother other individuals from being able to express theirs. Steven Hawking for example, despite his disability, has found an outlet, which has allowed him to change the world. But imagine, if instead of the technology that enables him to express himself, he was prevented from speaking. Imagine if he was treated differently and if it's possible that there could be other incredible minds in similar situations that don't have a voice?
I was never going to be an incredible intellect despite a very high IQ, but have found other outlets for my own aptitudes. I have a reasonably good sporting ability and the ability to draw. I have as it turns out, a strong spacial awareness, because as I now know from the testing which was done because of my epilepsy, I have a very visual brain. So it has allowed me knowing that, to develop a strategy for studying and to improve my memory. But because of the limitations I'm faced with, I can't help develop new ideas in jobs where my love of finding solutions and developing strategy, because exam conditions only suit certain ways of learning, or even simply because of legal discrimination.
The frustration that creates, for anyone who is in my position, stems from that desire to find an outlet to express abilities and aptitudes. My bike is therefore not only a tool for tackling stigma, but the outlet which is free from laws, exams, controls etc, which would otherwise prevent me from expressing myself through it. Riding is a way of feeling satisfied in myself, that I'm pushing my abilities to the limit, that I can achieve my own potential in something.
We might not know where our potential lies, but when we live in a society where we have a situation manufactured so that certain individuals can't even test that potential, then it becomes discrimination.
Take for example, the ease by which so many organisations can discriminate against a number of disabilities, by putting 'driving' as an essential requirement. Not least epilepsy.
In the UK, there is absolutely no law that prevents this from happening. I had hoped, that I could help, by becoming a Councillor in Glasgow. But unfortunately, individuals which are so well talked about in the media at the top of political organisations are far more interesting for the media to cover, than young potential politicians, with a hope to make real change for people who could need it the most. So the conditions weren't favourable to be elected because I stood for the Scottish Labour Party.
The one aptitude, if you could call it that, that my epilepsy has created in me, that wouldn't have otherwise been there however, is resilience. So I'm keeping fighting to try and affect change in a small area, that could be life-changing for some. I'll continue to use any influence I have to affect change in the law around discrimination on the basis of convenience for organisations to hire someone with a driving licence. A job for example within Business Development, or ironically commonly within Sport, could be filled by an extraordinary candidate, like so many friends I know with epilepsy. They could be more qualified, more apt and doing the role than those people who actually apply and because of that, those companies would be missing out.
It has to change, however much work it may take to achieve that change.
So as long as I have a pulse, I'll be working towards that change and other projects like breaking the women's 24 hour track cycling WR. The resilience that epilepsy nurtured in me is something I'm incredibly thankful for. It can't be taken away from me and if I have it, then I believe I have a duty to use it for good.
We can break down barriers that prevent people from achieving their potential, but in order to do that, we have to make sure that those who can change the laws, processes and conventions, understand what it's like to walk in the shoes of those who are let down by the system.
If you can't express yourself through your career, then how do you express yourself in a valued way?
I find it interesting that art is considered 'a therapy' for people with disabilities. But the reality is that it could be far more that just a therapy, the next great artist could be disabled and creating incredible paintings. They need the tools and the conditions to do it in though.
I believe everyone has an aptitude in some way, but it's not obvious when there's processes in place that value certain aptitudes in life and smother other individuals from being able to express theirs. Steven Hawking for example, despite his disability, has found an outlet, which has allowed him to change the world. But imagine, if instead of the technology that enables him to express himself, he was prevented from speaking. Imagine if he was treated differently and if it's possible that there could be other incredible minds in similar situations that don't have a voice?
I was never going to be an incredible intellect despite a very high IQ, but have found other outlets for my own aptitudes. I have a reasonably good sporting ability and the ability to draw. I have as it turns out, a strong spacial awareness, because as I now know from the testing which was done because of my epilepsy, I have a very visual brain. So it has allowed me knowing that, to develop a strategy for studying and to improve my memory. But because of the limitations I'm faced with, I can't help develop new ideas in jobs where my love of finding solutions and developing strategy, because exam conditions only suit certain ways of learning, or even simply because of legal discrimination.
The frustration that creates, for anyone who is in my position, stems from that desire to find an outlet to express abilities and aptitudes. My bike is therefore not only a tool for tackling stigma, but the outlet which is free from laws, exams, controls etc, which would otherwise prevent me from expressing myself through it. Riding is a way of feeling satisfied in myself, that I'm pushing my abilities to the limit, that I can achieve my own potential in something.
We might not know where our potential lies, but when we live in a society where we have a situation manufactured so that certain individuals can't even test that potential, then it becomes discrimination.
Take for example, the ease by which so many organisations can discriminate against a number of disabilities, by putting 'driving' as an essential requirement. Not least epilepsy.
In the UK, there is absolutely no law that prevents this from happening. I had hoped, that I could help, by becoming a Councillor in Glasgow. But unfortunately, individuals which are so well talked about in the media at the top of political organisations are far more interesting for the media to cover, than young potential politicians, with a hope to make real change for people who could need it the most. So the conditions weren't favourable to be elected because I stood for the Scottish Labour Party.
The one aptitude, if you could call it that, that my epilepsy has created in me, that wouldn't have otherwise been there however, is resilience. So I'm keeping fighting to try and affect change in a small area, that could be life-changing for some. I'll continue to use any influence I have to affect change in the law around discrimination on the basis of convenience for organisations to hire someone with a driving licence. A job for example within Business Development, or ironically commonly within Sport, could be filled by an extraordinary candidate, like so many friends I know with epilepsy. They could be more qualified, more apt and doing the role than those people who actually apply and because of that, those companies would be missing out.
It has to change, however much work it may take to achieve that change.
So as long as I have a pulse, I'll be working towards that change and other projects like breaking the women's 24 hour track cycling WR. The resilience that epilepsy nurtured in me is something I'm incredibly thankful for. It can't be taken away from me and if I have it, then I believe I have a duty to use it for good.
We can break down barriers that prevent people from achieving their potential, but in order to do that, we have to make sure that those who can change the laws, processes and conventions, understand what it's like to walk in the shoes of those who are let down by the system.
Monday, 8 June 2015
If you fall...
I have to say, riding a pop up velodrome is a relatively alien concept, other than my experience on full sized velodromes, I don't have a vast amount of experience doing it. One thing I found was an almost mental block to turning sharply on the banking, I was looking ahead, as I've done most of my cycling career, so I guess it's understandable that I would take a bit more training to be one of the best pro's in the series and start shaving time off my riding. But to another extent, I thought to myself recently about why the kids are so fearless riding Street Velodrome and why adults like me, hold back more on it... The fear of falling.
I happen to be very good at rationalising fear and overcoming it, so I started thinking about falling while I was riding. There's certainly a leap of faith you have to put into something where there is any element of danger. Faith the banking will hold, faith that your own bike handling will be good enough. But I think the hardest fear to overcome when you get older is the fear of failure. I thought some more about the childish simplicity of falling over on the bike and what would happen if we did. The answer, is so simple it hurts. We get back up again.
I've fallen before in life, I joined the police. It wasn't something I did lightly and I never thought as a child that I'd ever be able to do it, but it was always a dream of mine since I was a kid. I fell, not only metaphorically but literally as well, when I had my break-through seizure. But you know what, I got back up. Things even worked out better than I could have ever imagined after leaving the police and I hope that in the future they'll get even better.
I guess the point I'm attempting to make is that, we should at least try. There's always the option to sit on the sidelines and watch the world go by, but that's no way to live a life. You can't achieve anything unless you throw your hat in the ring and give things a go.
This Sunday in Stevenage, I've told myself that I'll risk falling and push my riding skills at this weekend's Street Velodrome, after all I can only fall and get back up. We all heal with time, we can all brush ourselves down and start again. We're made through failure, it's also what helps us relish in triumph.
The biggest opportunity I have to fall on my face trying to attempt something in the next 12 months though, isn't Street Velodrome, it's not work related, but it will take a huge amount of work, both physically, mentally and financially.
The Women's 24HR Track Cycling WR, is something that I've been targeting for a long time, but only recently, has there been the opportunity to get the venue for the attempt. It's frightening and stressful, because there's the possibility to let people down, to feel like I've let the condition down. It's also not an easy ride to stage, it's expensive and time consuming, so it's the kind of ride you'd likely only get one, maybe two at the most, attempts at.
There is however a huge 'but' in all of this... If I don't attempt the ride, then there's no prospect of shining a light on the condition, showing what people with epilepsy could do, no raising money for Epilepsy Action, none if it.
So I'm going to attempt the record.
Sometimes as we get older, pride scars more than cuts, breaks and bruises.
But then there's some things in life that are more important than pride and after all, if we fall down, we can always get up and try again, no matter how hard it might be, it's still possible.
I happen to be very good at rationalising fear and overcoming it, so I started thinking about falling while I was riding. There's certainly a leap of faith you have to put into something where there is any element of danger. Faith the banking will hold, faith that your own bike handling will be good enough. But I think the hardest fear to overcome when you get older is the fear of failure. I thought some more about the childish simplicity of falling over on the bike and what would happen if we did. The answer, is so simple it hurts. We get back up again.
I've fallen before in life, I joined the police. It wasn't something I did lightly and I never thought as a child that I'd ever be able to do it, but it was always a dream of mine since I was a kid. I fell, not only metaphorically but literally as well, when I had my break-through seizure. But you know what, I got back up. Things even worked out better than I could have ever imagined after leaving the police and I hope that in the future they'll get even better.
I guess the point I'm attempting to make is that, we should at least try. There's always the option to sit on the sidelines and watch the world go by, but that's no way to live a life. You can't achieve anything unless you throw your hat in the ring and give things a go.
This Sunday in Stevenage, I've told myself that I'll risk falling and push my riding skills at this weekend's Street Velodrome, after all I can only fall and get back up. We all heal with time, we can all brush ourselves down and start again. We're made through failure, it's also what helps us relish in triumph.
The biggest opportunity I have to fall on my face trying to attempt something in the next 12 months though, isn't Street Velodrome, it's not work related, but it will take a huge amount of work, both physically, mentally and financially.
The Women's 24HR Track Cycling WR, is something that I've been targeting for a long time, but only recently, has there been the opportunity to get the venue for the attempt. It's frightening and stressful, because there's the possibility to let people down, to feel like I've let the condition down. It's also not an easy ride to stage, it's expensive and time consuming, so it's the kind of ride you'd likely only get one, maybe two at the most, attempts at.
There is however a huge 'but' in all of this... If I don't attempt the ride, then there's no prospect of shining a light on the condition, showing what people with epilepsy could do, no raising money for Epilepsy Action, none if it.
So I'm going to attempt the record.
Sometimes as we get older, pride scars more than cuts, breaks and bruises.
But then there's some things in life that are more important than pride and after all, if we fall down, we can always get up and try again, no matter how hard it might be, it's still possible.
Wednesday, 3 June 2015
Performance Dehancing with Drugs?
One of the most common misconceptions I hear and get asked about my ultra-marathon cycling and epilepsy, is around its potential to cause me to have a seizure. It's not only something that doesn't affect my epilepsy, it's something from my own experience, that has actively helped it. I have been previously told that mental stress, could contribute to lowering my seizure threshold, i.e. increasing the likelihood that I could have a seizure, even if the risk is still very small. Sport, in particular the solitude and endorphins I get from my distance cycling, not only makes me healthier physically, but also makes me happier.
While at university, I was told during an incident of having a double fractured pinky finger, that once I had started riding again, when it had healed, I was as my friend put it, "less irritable" and "seemed happier". Although they didn't want to tell me at the time when I was off my bike, it certainly made sense, that I would be healthier and happier when I was training and riding. In a way, my bike riding seems to have served as an TLE epilepsy medication in its own right. To my knowledge I've never had an epileptic seizure while training by myself, away from any stress whatsoever of riding with groups and with nothing but my riding and music to focus on.
But given my love of sport and dislike for having to take medication for my epilepsy in the first place, you'd understand, that I took an interest in the BBC report by Mark Daly yesterday, which if true, shows disgusting abuse of medical conditions to cover up performance enhancing drug abuse at the hands of Alberto Salazar.
The jury is still out conclusively on what the situation is with the Nike Oregon project coach and some of his athletes. But it did spike my curiosity around something which has previously happened to me, that was rectified by my doctors, but that made me think certain drugs, could also dehance physical performance.
While my medication, first and foremost controls my epilepsy, it has also previously had to be adjusted to a lower dose, because it seemed quite simply, as if my body couldn't deal with the dose. I remember vividly, after lying down, I moved into a sitting position and began seeing stars, experiencing brief blurred vision as well. During that time I was also noticeably clumsy, not within any normal level I had ever experienced, where I would bump into things far more than normal and was more tiered. As a result, when I went to go and see my consultant to explain the situation, they halved my dose of one of my two medications, and the side effects, have ever since then, stopped completely.
I know of so many incidences where not just with epilepsy, a condition's medications could make someone more tiered, fatigue more quickly, or even just be so sleepy, they couldn't compete in any physical activity at all. But what angers me more than feeling that even half my dose of epilepsy medication which was making me feel unwell previously, might mean I would need to train even harder, or work through a bigger mental or physical barrier than someone without a medical condition, is the idea of cheats creating fictional ones so performance enhancing doping could be undertaken.
I've spoken before about my distain towards Lance Armstrong on this blog, and that regardless of how famous, or infamous he is, I always hope he keeps well away from the Race Across America and is never allowed to compete in the ride. But given the more recent report about drug doping in the athletics world, it feels as if something more drastic needs to be done.
At present, if an athlete in any sport needs a TUE (Therapeutic Use Exemption form), to allow them to take a drug, like if it were in my case, for my epilepsy, they would need a doctors report that they have a medical issue in the first place before they can obtain a TUE form.
I love sport and all that it can stand for when it's clean, but the idea that fictional medical conditions could be created for the use of cheating, makes me sick to my stomach. Even more than regular doping itself in fact, for the simple reason that it shows such total disrespect to people genuinely suffering with medical conditions.
Mark Daly's report, also explored athlete's medical passports too, but the point was made during the film that if someone who is ill, requires a drug which is performance enhancing, then shouldn't they just rest up and not compete in the first place? Sometimes the threat of a punishment, can be used as a preventative measure and it's my belief that anyone caught doping, should be given a ban from competitive sport, even if it goes into the pro-am category, for life. But it also occurs to me that rather than athletes in any sport using their own doctors to diagnose a condition which requires a drug, that could even slightly enhance performance, then they should go straight to WADA's doctors instead?
The medical community and the charities that raise awareness for them, should be outraged by any potential for the condition they work with, to be used falsely, to cheat in sport. I should also say, that as someone who could, potentially, be handicapped by my own medication when I compete, but who would continue to fight through it anyway if it was, that I would like to see people who abuse the system and medical conditions in this particular way, behind bars.
Why could we have to fight even harder, when there could be those who don't have to fight as hard, that get to make their ride even easier?
While at university, I was told during an incident of having a double fractured pinky finger, that once I had started riding again, when it had healed, I was as my friend put it, "less irritable" and "seemed happier". Although they didn't want to tell me at the time when I was off my bike, it certainly made sense, that I would be healthier and happier when I was training and riding. In a way, my bike riding seems to have served as an TLE epilepsy medication in its own right. To my knowledge I've never had an epileptic seizure while training by myself, away from any stress whatsoever of riding with groups and with nothing but my riding and music to focus on.
But given my love of sport and dislike for having to take medication for my epilepsy in the first place, you'd understand, that I took an interest in the BBC report by Mark Daly yesterday, which if true, shows disgusting abuse of medical conditions to cover up performance enhancing drug abuse at the hands of Alberto Salazar.
The jury is still out conclusively on what the situation is with the Nike Oregon project coach and some of his athletes. But it did spike my curiosity around something which has previously happened to me, that was rectified by my doctors, but that made me think certain drugs, could also dehance physical performance.
While my medication, first and foremost controls my epilepsy, it has also previously had to be adjusted to a lower dose, because it seemed quite simply, as if my body couldn't deal with the dose. I remember vividly, after lying down, I moved into a sitting position and began seeing stars, experiencing brief blurred vision as well. During that time I was also noticeably clumsy, not within any normal level I had ever experienced, where I would bump into things far more than normal and was more tiered. As a result, when I went to go and see my consultant to explain the situation, they halved my dose of one of my two medications, and the side effects, have ever since then, stopped completely.
I know of so many incidences where not just with epilepsy, a condition's medications could make someone more tiered, fatigue more quickly, or even just be so sleepy, they couldn't compete in any physical activity at all. But what angers me more than feeling that even half my dose of epilepsy medication which was making me feel unwell previously, might mean I would need to train even harder, or work through a bigger mental or physical barrier than someone without a medical condition, is the idea of cheats creating fictional ones so performance enhancing doping could be undertaken.
I've spoken before about my distain towards Lance Armstrong on this blog, and that regardless of how famous, or infamous he is, I always hope he keeps well away from the Race Across America and is never allowed to compete in the ride. But given the more recent report about drug doping in the athletics world, it feels as if something more drastic needs to be done.
At present, if an athlete in any sport needs a TUE (Therapeutic Use Exemption form), to allow them to take a drug, like if it were in my case, for my epilepsy, they would need a doctors report that they have a medical issue in the first place before they can obtain a TUE form.
I love sport and all that it can stand for when it's clean, but the idea that fictional medical conditions could be created for the use of cheating, makes me sick to my stomach. Even more than regular doping itself in fact, for the simple reason that it shows such total disrespect to people genuinely suffering with medical conditions.
Mark Daly's report, also explored athlete's medical passports too, but the point was made during the film that if someone who is ill, requires a drug which is performance enhancing, then shouldn't they just rest up and not compete in the first place? Sometimes the threat of a punishment, can be used as a preventative measure and it's my belief that anyone caught doping, should be given a ban from competitive sport, even if it goes into the pro-am category, for life. But it also occurs to me that rather than athletes in any sport using their own doctors to diagnose a condition which requires a drug, that could even slightly enhance performance, then they should go straight to WADA's doctors instead?
The medical community and the charities that raise awareness for them, should be outraged by any potential for the condition they work with, to be used falsely, to cheat in sport. I should also say, that as someone who could, potentially, be handicapped by my own medication when I compete, but who would continue to fight through it anyway if it was, that I would like to see people who abuse the system and medical conditions in this particular way, behind bars.
Why could we have to fight even harder, when there could be those who don't have to fight as hard, that get to make their ride even easier?
Monday, 25 May 2015
Permanence
One of the things I am most thankful for in my life, is that the epilepsy I had until I was 14, wasn't going to be the same ever again after undergoing Neurosurgery. The only thing that has stayed the same since Jan 2001, is that I will live the rest of my life, without parts of my right temporal lobe. It's just one of many things that I am eternally glad are permanent.
In life, there are so many things I love that gives me a sense of permanence, even though they may be in some cases fleeting. I have a great love of photography and many of my favourite pictures are of something, like an incredible sunset, that only last moments. It's the ability to capture the moment that I love however. But change can also be good, great even - laws allowing greater rights for people with epilepsy, increased awareness, so many other changes... However it can also be extremely damaging, life changing and disruptive, my epilepsy returning, leaving the police... I could go on.
One of the major things in my life, in anyone's life, that I made a conscious decision to stay permanent, is not driving. Yes I am at the mercy of public transport or others, to travel long distances, but it means that my bike is always the permanent fixture in my life, and honestly, I wouldn't have it any other way. The cycling community is a generous one and I've found becoming part of it in the UK and USA most notably, not only personally rewarding, but extremely helpful in my ambition to raise awareness for epilepsy.
To those that don't know a lot about the condition, it's not at all an obvious marriage, but it works. My helmet keeps me safer than I would be walking down the street and the kind of cycling that I do allows me to make a statement about the reality of epilepsy. I've heard so many people ask about the impact of cycling on my epilepsy, worries that it could adversely affect it, but it's those questions that allow an open conversation about it, which can only lead to better awareness and less ignorance. For example, last week I had to delete a comment on this very blog, because a commenter thought they would explain that epilepsy was a seizure disorder. It's not. It's a neurological medical condition. To call it a disorder, is not only an insult, it's also wrong.
Another question I get a lot about my bike riding specifically, is the understandable curiosity, that crashing and banging my head might make my epilepsy worse. It's not an unfair question, but the reality, is far from what people may think. Crashing on the bike doesn't affect epilepsy at all, unless it becomes the cause for a whole new type of epilepsy, which could happen to absolutely anyone, including people with epilepsy in equal measure and is still extremely rare as a cause.
A few months ago I had a seizure which left me scarred and bruised badly, but it only happened on the stairs, in the close up to my flat. I wasn't wearing a helmet and if I had been, if I'd just come in from a ride, I'd likely not have sustained any injury at all.
In a few days I'll be riding on a very temporary structure, that is the UK's first pop-up velodrome. Street Velodrome, have been generous enough to let me talk about my riding, but I'm under no illusions that there's a chance I'll crash, when it's something that seems a right of passage for most of the pros. One thing my epilepsy has taught me over the years, is to understand fear and how to conquer it though. The seizures I experienced were uncontrollable fear, but I can control how I react to things that make me nervous or scared and a lot of that steel comes from the bravery I've absorbed from friends and kids I've met that have epilepsy too. But while the event itself, will disappear overnight, it's my hope that I could leave a more lasting knowledge that people with epilepsy aren't fragile, or need to stay away from any form of exhaustion, or danger.
It's the kind of adrenaline rush on a bike I live for and I'd challenge anyone who believes that someone with epilepsy should stay at home and off a bike, to take it on.
In life, there are so many things I love that gives me a sense of permanence, even though they may be in some cases fleeting. I have a great love of photography and many of my favourite pictures are of something, like an incredible sunset, that only last moments. It's the ability to capture the moment that I love however. But change can also be good, great even - laws allowing greater rights for people with epilepsy, increased awareness, so many other changes... However it can also be extremely damaging, life changing and disruptive, my epilepsy returning, leaving the police... I could go on.
One of the major things in my life, in anyone's life, that I made a conscious decision to stay permanent, is not driving. Yes I am at the mercy of public transport or others, to travel long distances, but it means that my bike is always the permanent fixture in my life, and honestly, I wouldn't have it any other way. The cycling community is a generous one and I've found becoming part of it in the UK and USA most notably, not only personally rewarding, but extremely helpful in my ambition to raise awareness for epilepsy.
To those that don't know a lot about the condition, it's not at all an obvious marriage, but it works. My helmet keeps me safer than I would be walking down the street and the kind of cycling that I do allows me to make a statement about the reality of epilepsy. I've heard so many people ask about the impact of cycling on my epilepsy, worries that it could adversely affect it, but it's those questions that allow an open conversation about it, which can only lead to better awareness and less ignorance. For example, last week I had to delete a comment on this very blog, because a commenter thought they would explain that epilepsy was a seizure disorder. It's not. It's a neurological medical condition. To call it a disorder, is not only an insult, it's also wrong.
Another question I get a lot about my bike riding specifically, is the understandable curiosity, that crashing and banging my head might make my epilepsy worse. It's not an unfair question, but the reality, is far from what people may think. Crashing on the bike doesn't affect epilepsy at all, unless it becomes the cause for a whole new type of epilepsy, which could happen to absolutely anyone, including people with epilepsy in equal measure and is still extremely rare as a cause.
A few months ago I had a seizure which left me scarred and bruised badly, but it only happened on the stairs, in the close up to my flat. I wasn't wearing a helmet and if I had been, if I'd just come in from a ride, I'd likely not have sustained any injury at all.
In a few days I'll be riding on a very temporary structure, that is the UK's first pop-up velodrome. Street Velodrome, have been generous enough to let me talk about my riding, but I'm under no illusions that there's a chance I'll crash, when it's something that seems a right of passage for most of the pros. One thing my epilepsy has taught me over the years, is to understand fear and how to conquer it though. The seizures I experienced were uncontrollable fear, but I can control how I react to things that make me nervous or scared and a lot of that steel comes from the bravery I've absorbed from friends and kids I've met that have epilepsy too. But while the event itself, will disappear overnight, it's my hope that I could leave a more lasting knowledge that people with epilepsy aren't fragile, or need to stay away from any form of exhaustion, or danger.
It's the kind of adrenaline rush on a bike I live for and I'd challenge anyone who believes that someone with epilepsy should stay at home and off a bike, to take it on.
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