I hope my declaration doesn't put any of you off my blog, but I have to say I've had an interesting weekend. Thanks to my dad, I've been a die hard Chelsea FC fan since the age of about 5 or 6 I think, at least a couple of decades, put it that way!
It probably hasn't escaped your notice that my team and fans like me had their dream come true, when yesterday we won the biggest prize in club football, the European Championship, or Champions League to you and me.
After I saw the trophy in the flesh coming down Hortensia Road in Chelsea with the team, I thought, what do we do next? I guess if you're striving for something for so long that is the pinnacle of achievement, you don't really plan what you do after it happens. But then again I guess there is only one thing you can really do.
- You do more.
I suppose for people with Epilepsy, the pinnacle is being cured or completely in control of their condition. So what do you do once you cure your condition? Well you do more.
I sometimes feel incredibly guilty that my Epilepsy is under control whilst others didn't have the same luck as me. But I suppose I'm proud of myself in a way for taking on the Race Across America. I wanted to do it to raise awareness and I did in a small way. I became the youngest British female to ever complete the race across all categories. So what do you do when you have achieved that dream? You aim for more, the first ever British female to complete the RAAM Solo, the first ever female to win the race outright and claim the $25,000 prize which is still on offer for that cyclist.
I guess for Chelsea, there has never been a club in history to successfully defend the Champion's League, that could be Chelsea's new dream. Maybe even to become World Club Champions?
I think one of the reasons Chelsea were successful in winning the Champion's League was because they wanted it, more than anything. I think doing it again is harder, you loose the raw desire you had because it has already been done.
But if something wasn't hard, why would it be worth doing? Why would it be worth the energy and desire to achieve?
For me, my dreams came true when I had my Neurosurgery in the Sick Kids Hospital in Edinburgh.
It changed my life.
The fact that I am now going to be carrying the Olympic Flame in London is just icing on the cake, but I want to do more than just carry the flame. It will probably be one of the most memorable experiences of my life. But in being given the torch after my 300 meters, I want to take it back to the place that gave me the opportunity to take part in my first Race Across America to say thank-you. Because, quite frankly, I wouldn't be carrying the Olympic Torch without the Doctors and Nurses who looked after me in the way they did there.
I feel I can do more with my torch than just put in on my mantle piece. I hope it shows the young kids in Ward 7 of the hospital I was treated in myself, of what could lie ahead for them.
The one thing that keeps my guilt of not being in the situation, that other young people with Epilepsy who don't have their condition controlled or cured in check, is the constant faith that people who are involved with the condition will do more. That scientists will find a cure for Epilepsy, a dream drug or something like that.
If we achieve our dreams, why settle?
There's always a new dream to achieve or something more we can do with our dreams when they come true.
Sunday, 20 May 2012
Thursday, 17 May 2012
The legacy of rejection
Legacy is a word which is used a lot at the moment: Olympic legacy, social legacy, legacy wills.
I wonder what legacy rejection leaves on someone?
As someone with Epilepsy, I've experience my fair share of rejection, from boyfriends who don't want the baggage, from school because I was different. Even to the Police who told me I had to resign or they wouldn't state on my paperwork why I was dismissed, rather than properly medically dismissing me because the medical legislation was changing.
But rejection isn't unique to people with Epilepsy, or me, it happens to all of us. None of us are perfect, but I wonder if we're not perfect because we've experienced that rejection in our lives. Maybe the legacy of rejection is that we experience a paranoia to do with something about the way we act? It's very hard to shake.
But maybe there is also a legacy to paranoia:
- self awareness.
It's a silver lining that I think, can, not only help improve ourselves as people, but also give us an understanding and context into the way other people are the way they are.
- The people who sail through life, may be the people we aspire to be, but I very much doubt they have the insight that the people who don't sail through life have because they haven't experienced the same rejection.
But how do we come across our self-awareness though?
Well I certainly don't think it all comes to us over-night, but we might actually stumble across something which clicks with us and makes sense throughout a thread of our behaviour. I guess if we are curious about why we behave in the way we do, then we will come across these things, that eventually build a picture up about why people react to us in a certain way.
Although sometimes it just takes us to communicate with someone, especially those close to us.
My brother told me something recently, which actually made complete sense and was a kind of eureka moment. I'm sure I'll have many more of them to come. I'm sure we all will if we are open to them.
The one thing rejection has taught me is never to judge people for the way they come across. You never know how past rejections or experiences could manifest itself. Maybe it could have left them with a legacy, of a lack of self confidence. Maybe that's the reason why they behave in the way they do?
Whatever the reason for it, we all have a legacy left with us, 'our personal baggage', that makes us who we are. I think for the things we can change, that maybe makes others feel uncomfortable, we should.
It's all very well saying "you can take me or leave me", but how then, do you develop as a person?
Friday, 11 May 2012
"I would run 500 miles"
Given the recent publicity about the recent London Marathon, due to shocking death of Claire Squire, I wondered what is it about people that makes them take time out of their normal lives to train, take part in a challenge and raise money for a cause?
I think it's fair to say that many people do it for the sport, for the prestige and maybe a sense of feeling better about yourself, that you have done your bit for charity in an ever increasing materialistic world. I suppose I would ask, would you give up something like your bottle of wine, fancy dinner, posh coffees or regular beer for a week and donate the money to charity instead? The other side of the coin is the people who donate. Do they do it because their friend is doing something, because they liked a charities marketing campaign, or because they feel they're 'doing their bit' that way?
I would hope that actually while these may be factors, that actually people take part or donate to charity because they are human beings. I suspect in many cases, the true reason people raise money for charity is tragically for reason of love. A death or serious illness in the family, something which has affected the standard of life to those close to them.
I think because we love people, we encounter the worst feeling you can encounter of not being able to do anything to help that loved one. It's very natural then, that as human beings we would want to try and help. Two of the most natural feelings people have in them is compassion and love and without it, we wouldn't be the human beings we are.
Cynics would say, people want to feel a sense of empowerment, that ego comes into many of the challenges people take on. I can't say that's not wholly untrue. In my case I felt helpless regarding the fact Epilepsy charities are underdogs and that they didn't command the presence that a big Cancer charity did for example. I thought the best thing I could do was to be the first woman from the UK to cycle 3000 miles across America officially as part of the RAAM. But the reason I am still planning on doing it and strive for press coverage of it, wasn't so I could become a figurehead. Quite the opposite, I tend to dislike people who show off because they've done something. I wanted to do it, because I was, to be blunt, shit scared one of my friends would die from SUDEP (Sudden Unexpected Death from Epilepsy) and that it could've been prevented if someone had known about the condition and how to deal with seizures.
I make no bones about my ambition to have the attempt documented on television. But it would give me a chance to actually talk about Epilepsy, it's risks and how anyone could help. I'd rather it not be something like RAAM, as the race has it's risks, but if it takes me to do the world toughest endurance sporting event to get the opportunity to talk about Epilepsy, then so be it.
I wouldn't do something with the risks if I didn't feel like I had to, I don't want people to donate to Epilepsy Action or other charities because I died trying, so I'm taking every precaution possible to make sure I'm safe. But there are still people with Epilepsy who don't know about SUDEP and the precautions they should take.
I suppose the I'm cycling to prevent the tragedy that would motivate someone to do something like the RAAM or a marathon, but it's still the love I have for my big brother Phil and my friends like Georgia and Susie that motivates me more than anything to achieve my goal.
I always say, if don't know what you're riding for then it's so much harder to get through the tough periods a race like RAAM throws up.
But I know what I'm riding for, I know the people I'm riding for and when the lactic acid in my muscles really start to kill, that's what will keep me going.
I think it's fair to say that many people do it for the sport, for the prestige and maybe a sense of feeling better about yourself, that you have done your bit for charity in an ever increasing materialistic world. I suppose I would ask, would you give up something like your bottle of wine, fancy dinner, posh coffees or regular beer for a week and donate the money to charity instead? The other side of the coin is the people who donate. Do they do it because their friend is doing something, because they liked a charities marketing campaign, or because they feel they're 'doing their bit' that way?
I would hope that actually while these may be factors, that actually people take part or donate to charity because they are human beings. I suspect in many cases, the true reason people raise money for charity is tragically for reason of love. A death or serious illness in the family, something which has affected the standard of life to those close to them.
I think because we love people, we encounter the worst feeling you can encounter of not being able to do anything to help that loved one. It's very natural then, that as human beings we would want to try and help. Two of the most natural feelings people have in them is compassion and love and without it, we wouldn't be the human beings we are.
Cynics would say, people want to feel a sense of empowerment, that ego comes into many of the challenges people take on. I can't say that's not wholly untrue. In my case I felt helpless regarding the fact Epilepsy charities are underdogs and that they didn't command the presence that a big Cancer charity did for example. I thought the best thing I could do was to be the first woman from the UK to cycle 3000 miles across America officially as part of the RAAM. But the reason I am still planning on doing it and strive for press coverage of it, wasn't so I could become a figurehead. Quite the opposite, I tend to dislike people who show off because they've done something. I wanted to do it, because I was, to be blunt, shit scared one of my friends would die from SUDEP (Sudden Unexpected Death from Epilepsy) and that it could've been prevented if someone had known about the condition and how to deal with seizures.
I make no bones about my ambition to have the attempt documented on television. But it would give me a chance to actually talk about Epilepsy, it's risks and how anyone could help. I'd rather it not be something like RAAM, as the race has it's risks, but if it takes me to do the world toughest endurance sporting event to get the opportunity to talk about Epilepsy, then so be it.
I wouldn't do something with the risks if I didn't feel like I had to, I don't want people to donate to Epilepsy Action or other charities because I died trying, so I'm taking every precaution possible to make sure I'm safe. But there are still people with Epilepsy who don't know about SUDEP and the precautions they should take.
I suppose the I'm cycling to prevent the tragedy that would motivate someone to do something like the RAAM or a marathon, but it's still the love I have for my big brother Phil and my friends like Georgia and Susie that motivates me more than anything to achieve my goal.
I always say, if don't know what you're riding for then it's so much harder to get through the tough periods a race like RAAM throws up.
But I know what I'm riding for, I know the people I'm riding for and when the lactic acid in my muscles really start to kill, that's what will keep me going.
Tuesday, 1 May 2012
Don't settle and live your life your way!
I've realised recently that actually I may write about Epilepsy in a certain way. I think I maybe talk about the stigma a lot, about the barriers, about the side effects of the medication too much. They still exist, true. But one thing I've realised is there's a lot to be optimistic about too.
I guess we don't all need to have an incredible gigantic achievement to tackle the stigma. It's more important just to live our lives the way we want to live them!
One thing I've realised understanding the charities involved with the condition, about the people who are gradually coming forward with the condition, is that they are all incredible. There just seems to be something about Epilepsy that makes people who have the condition or involved with it different.
I don't have a definitive answer why but I have a theory.
I wonder that maybe because the stigma exists, because the charities are the underdogs, that it makes people with Epilepsy stronger as a result? I had a conversation with a sportsman who had Epilepsy and he explained how he had immediate demand from Epilepsy charities to work with them. What came across most was his modesty, he's rare. But it also occurred to me that he was just living his life the way he wanted to live it. His Epilepsy didn't stop him from performing in his particular sport.
He hasn't let it.
I guess the other thing that came out of the conversation was my own feeling of being really in admiration of him, given he was in the public eye and the bravery it took to talk about his condition. I think people with Epilepsy have a real loyalty to people who donate time or finance to the few charities that represent us, because they are charity underdogs given how common the condition is: in the UK 1 in 103 people have Epilepsy.
I'm pretty sure he thought I was a nutter! But I guess I just wanted to express my thanks. (I'm not an Epilepsy ambassador stalker, honest!)
In 2010 for every £200 spent on the Arts Council for England, £1 was spent on the leading awareness and Epilepsy lobbying charity in the UK, the British Epilepsy Association, or Epilepsy Action to you and me.
But boy do Epilepsy Action, NSE, Young Epilepsy and the other Epilepsy charities in the UK punch above their weight. They do so much with what their given. There's a tenacity about them.
I wonder because the condition can be isolating, if we grab onto the little pieces of awareness we get more, the little bits of help more, that we appreciate employers who are okay with our condition that much more?
But as I say, there just seems to be something about Epilepsy. The people I know and have met with the condition seem to all have a common quality about them:
Determination.
For those who have read about what helped me through the Race Across America, it probably wasn't my fitness that got me through the race, it was that inspiration I talked about. This determination that I seemed to encounter over and over again. A determination to achieve personal goals. I wonder if, because of the feeling I get myself of grabbing on to the inspiration I came across, that I actually felt I was letting this group I felt very loyal to down if I didn't stick with the difficult parts of the RAAM. Maybe it was that more than anything else that got me through the race?
I think the influence of this tight-knit group has moulded me in a certain way and I can't express how grateful I am for that. When you come up against adversity I think there's a human disposition to overcome it. I guess there's just more hidden adversity associated with Epilepsy than normal.
I would never wish Epilepsy on anyone. It's not a condition to be taken lightly and death from the condition does exist.
BUT -
If there was a silver lining to having the condition it's the constant quality that seems to be apparent in people I know with the condition. I wonder if Epilepsy is associated with the determination gene sometimes!
So here's a thought:
If we hold onto the qualities that we see in people who we see as like us, or represent us, maybe it will rub off and allow us to live our life the way we want to live it.
Funding for Epilepsy charities goes a long way and we should have faith that we will get the awareness and research of Epilepsy that is needed, if the Epilepsy charities continue to work in the incredible way they do now.
I should say that I have a bias here. I recently started work for Epilepsy Action 2 and a half weeks ago. I wouldn't be offended if you took my opinions with a pinch of salt, but I should say that I am 100% talking here from the point of view of someone who's lived with Epilepsy since I was 3, not as an employee of Epilepsy Action and what I say here are my own thoughts and opinions from my own experiences.
It has however given me an insight into an organisation that I genuinely feel privileged to work for. The people in the organisation are amazing, so hard working and incredibly determined. It's inspiring to get up in the morning and start work.
I'm so lucky. I have 3 amazing jobs, my full time job with Epilepsy Action and the 2 board roles that are all my passion. I hope to progress disability sport as much as I can in London through the Herne Hill Velodrome Trust and disability sport equality charity, Interactive. I love my sport and it takes my Epilepsy out of the equation, I didn't settle for something that was an average desk job.
Now, despite being in despair when I had to leave the Police 7 years ago, I feel like I'm living my life the way I want to live it. I took me 7 years, but I'm so fulfilled where I am now.
It just goes to show that controlling your seizures and having an amazing life is possible. It took me 21 years, but I got there. You may loose the seizures with the ever progressing treatment coming through, but you'll never loose the determination from what I can see.
I genuinely believe things will get better, because the people I know with Epilepsy never settled, our charities that represent us don't settle, they're amazing people, they inspired me and I bet you, there will be people who can do the same for you too.
Treatment is improving all the time and I think we can be optimistic about the chances of controlling our Epilepsy, even if it is very severe.
So don't settle, keep determined, aim high, keep the faith that Epilepsy awareness and treatment will get better and above all, strive to live the life you want to live, however that may be.
Dai Greene didn't settle, Leon Legge didn't settle, Laura Sandys MP didn't settle, Paul Maynard MP didn't settle and we shouldn't either!
I guess we don't all need to have an incredible gigantic achievement to tackle the stigma. It's more important just to live our lives the way we want to live them!
One thing I've realised understanding the charities involved with the condition, about the people who are gradually coming forward with the condition, is that they are all incredible. There just seems to be something about Epilepsy that makes people who have the condition or involved with it different.
I don't have a definitive answer why but I have a theory.
I wonder that maybe because the stigma exists, because the charities are the underdogs, that it makes people with Epilepsy stronger as a result? I had a conversation with a sportsman who had Epilepsy and he explained how he had immediate demand from Epilepsy charities to work with them. What came across most was his modesty, he's rare. But it also occurred to me that he was just living his life the way he wanted to live it. His Epilepsy didn't stop him from performing in his particular sport.
He hasn't let it.
I guess the other thing that came out of the conversation was my own feeling of being really in admiration of him, given he was in the public eye and the bravery it took to talk about his condition. I think people with Epilepsy have a real loyalty to people who donate time or finance to the few charities that represent us, because they are charity underdogs given how common the condition is: in the UK 1 in 103 people have Epilepsy.
I'm pretty sure he thought I was a nutter! But I guess I just wanted to express my thanks. (I'm not an Epilepsy ambassador stalker, honest!)
In 2010 for every £200 spent on the Arts Council for England, £1 was spent on the leading awareness and Epilepsy lobbying charity in the UK, the British Epilepsy Association, or Epilepsy Action to you and me.
But boy do Epilepsy Action, NSE, Young Epilepsy and the other Epilepsy charities in the UK punch above their weight. They do so much with what their given. There's a tenacity about them.
I wonder because the condition can be isolating, if we grab onto the little pieces of awareness we get more, the little bits of help more, that we appreciate employers who are okay with our condition that much more?
But as I say, there just seems to be something about Epilepsy. The people I know and have met with the condition seem to all have a common quality about them:
Determination.
For those who have read about what helped me through the Race Across America, it probably wasn't my fitness that got me through the race, it was that inspiration I talked about. This determination that I seemed to encounter over and over again. A determination to achieve personal goals. I wonder if, because of the feeling I get myself of grabbing on to the inspiration I came across, that I actually felt I was letting this group I felt very loyal to down if I didn't stick with the difficult parts of the RAAM. Maybe it was that more than anything else that got me through the race?
I think the influence of this tight-knit group has moulded me in a certain way and I can't express how grateful I am for that. When you come up against adversity I think there's a human disposition to overcome it. I guess there's just more hidden adversity associated with Epilepsy than normal.
I would never wish Epilepsy on anyone. It's not a condition to be taken lightly and death from the condition does exist.
BUT -
If there was a silver lining to having the condition it's the constant quality that seems to be apparent in people I know with the condition. I wonder if Epilepsy is associated with the determination gene sometimes!
So here's a thought:
If we hold onto the qualities that we see in people who we see as like us, or represent us, maybe it will rub off and allow us to live our life the way we want to live it.
Funding for Epilepsy charities goes a long way and we should have faith that we will get the awareness and research of Epilepsy that is needed, if the Epilepsy charities continue to work in the incredible way they do now.
I should say that I have a bias here. I recently started work for Epilepsy Action 2 and a half weeks ago. I wouldn't be offended if you took my opinions with a pinch of salt, but I should say that I am 100% talking here from the point of view of someone who's lived with Epilepsy since I was 3, not as an employee of Epilepsy Action and what I say here are my own thoughts and opinions from my own experiences.
It has however given me an insight into an organisation that I genuinely feel privileged to work for. The people in the organisation are amazing, so hard working and incredibly determined. It's inspiring to get up in the morning and start work.
I'm so lucky. I have 3 amazing jobs, my full time job with Epilepsy Action and the 2 board roles that are all my passion. I hope to progress disability sport as much as I can in London through the Herne Hill Velodrome Trust and disability sport equality charity, Interactive. I love my sport and it takes my Epilepsy out of the equation, I didn't settle for something that was an average desk job.
Now, despite being in despair when I had to leave the Police 7 years ago, I feel like I'm living my life the way I want to live it. I took me 7 years, but I'm so fulfilled where I am now.
It just goes to show that controlling your seizures and having an amazing life is possible. It took me 21 years, but I got there. You may loose the seizures with the ever progressing treatment coming through, but you'll never loose the determination from what I can see.
I genuinely believe things will get better, because the people I know with Epilepsy never settled, our charities that represent us don't settle, they're amazing people, they inspired me and I bet you, there will be people who can do the same for you too.
Treatment is improving all the time and I think we can be optimistic about the chances of controlling our Epilepsy, even if it is very severe.
So don't settle, keep determined, aim high, keep the faith that Epilepsy awareness and treatment will get better and above all, strive to live the life you want to live, however that may be.
Dai Greene didn't settle, Leon Legge didn't settle, Laura Sandys MP didn't settle, Paul Maynard MP didn't settle and we shouldn't either!
Wednesday, 25 April 2012
When does someone with Epilepsy stop being someone with Epilepsy?
Hope you all had a good Easter break - as you can tell by the gaping hole in the April blog posts I had a busy one! (Sorry about that)
Something that came up twice recently, from two separate individuals in completely unrelated situations was this idea of someone who wasn't having seizures, but wasn't sure if they still had Epilepsy.
The first was told off for "trying to get the sympathy vote" by saying he had Epilepsy. The other had controlled seizures but the side effects of the medication controlling them had almost as much impact, in this situation it was affecting his work.
It goes to show how complex the whole condition is, even after the seizures aren't there.
So if you develop Epilepsy, does that mean you are Epileptic for life?
I guess the answer lies somewhere in between the individual's medical situation and actually how they want to be perceived.
I'm actually not the best person to dish out advice on this scenario. I thought after my surgery I was cured. I guess that powerful word 'cure' implies that you no longer have a medical condition. BUT, for me, the medical guidelines went out the window along with my police career when I had a break-through seizure, 5 years after my surgery, even though the medical guidelines was that if I was 2 years seizure free, I was cured.
So for me, I'm now 2 years seizure free, but without the medication I take, I would be having seizures. So I consider myself Epileptic, but then maybe that is because for better or for worse, my Epilepsy has shaped my life in a huge way?
I believe people with Epilepsy come out of scenarios that they've had to cope with stronger, but then I would think that because I have Epilepsy!
So here's a question - if you have had to deal with the crap that Epilepsy brings, seizures or side effects from brain damage or medication, can you label yourself Epileptic, or describe yourself as someone with Epilepsy?
Epilepsy can sometimes have a wider effect on people with the condition than just the seizures that come along with it. It can cause anything from social issues like mild Autism, to stammers, drowsiness... the list goes on and on.
So if you suffer these effects I would say that yeah, you could describe yourself as someone with Epilepsy. It can sometimes simplify things, the condition itself is poorly understood, never mind the complexities that go along with it.
But conversely, it's not exactly an advantage to describe yourself as someone with Epilepsy or Epileptic, I certainly don't think it gains a sympathy vote. Sadly there is the opposite effect most of the time.
If your seizures are under control and you're worried a potential boyfriend or girlfriend would dump you if you mentioned your Epilepsy, it's up to you whether you mention it or not.
If you had childhood Epilepsy or surgery, maybe you will have a breakthrough seizure, but then Joe public could equally have an Epileptic Seizure out of the blue too.
Ultimately the answer is that there isn't one.
Sorry about that completely useless bit of advice, but the honest answer is, I think it's completely up to the individual how they see themselves - every case is unique and every situation is unique. You may be happy to say "I'm Epileptic", in one scenario but the next day not mention or even plan to mention it to someone else.
It's up to the individual.
The one thing that is apparent is that medical information is private, but NOBODY should feel like they can't say:
"I have Epilepsy!"
Something that came up twice recently, from two separate individuals in completely unrelated situations was this idea of someone who wasn't having seizures, but wasn't sure if they still had Epilepsy.
The first was told off for "trying to get the sympathy vote" by saying he had Epilepsy. The other had controlled seizures but the side effects of the medication controlling them had almost as much impact, in this situation it was affecting his work.
It goes to show how complex the whole condition is, even after the seizures aren't there.
So if you develop Epilepsy, does that mean you are Epileptic for life?
I guess the answer lies somewhere in between the individual's medical situation and actually how they want to be perceived.
I'm actually not the best person to dish out advice on this scenario. I thought after my surgery I was cured. I guess that powerful word 'cure' implies that you no longer have a medical condition. BUT, for me, the medical guidelines went out the window along with my police career when I had a break-through seizure, 5 years after my surgery, even though the medical guidelines was that if I was 2 years seizure free, I was cured.
So for me, I'm now 2 years seizure free, but without the medication I take, I would be having seizures. So I consider myself Epileptic, but then maybe that is because for better or for worse, my Epilepsy has shaped my life in a huge way?
I believe people with Epilepsy come out of scenarios that they've had to cope with stronger, but then I would think that because I have Epilepsy!
So here's a question - if you have had to deal with the crap that Epilepsy brings, seizures or side effects from brain damage or medication, can you label yourself Epileptic, or describe yourself as someone with Epilepsy?
Epilepsy can sometimes have a wider effect on people with the condition than just the seizures that come along with it. It can cause anything from social issues like mild Autism, to stammers, drowsiness... the list goes on and on.
So if you suffer these effects I would say that yeah, you could describe yourself as someone with Epilepsy. It can sometimes simplify things, the condition itself is poorly understood, never mind the complexities that go along with it.
But conversely, it's not exactly an advantage to describe yourself as someone with Epilepsy or Epileptic, I certainly don't think it gains a sympathy vote. Sadly there is the opposite effect most of the time.
If your seizures are under control and you're worried a potential boyfriend or girlfriend would dump you if you mentioned your Epilepsy, it's up to you whether you mention it or not.
If you had childhood Epilepsy or surgery, maybe you will have a breakthrough seizure, but then Joe public could equally have an Epileptic Seizure out of the blue too.
Ultimately the answer is that there isn't one.
Sorry about that completely useless bit of advice, but the honest answer is, I think it's completely up to the individual how they see themselves - every case is unique and every situation is unique. You may be happy to say "I'm Epileptic", in one scenario but the next day not mention or even plan to mention it to someone else.
It's up to the individual.
The one thing that is apparent is that medical information is private, but NOBODY should feel like they can't say:
"I have Epilepsy!"
Thursday, 5 April 2012
Bully for you: Lucy's Story
When I met Lucy a couple of years ago through an event to raise awareness for Epilepsy, she was there representing the young persons group she mentors, that discusses Epilepsy and bullying.
After I went for coffee with her, I understood just how much she does for the young people she works with, not just because of the help and advice she gives, but because of the incredible role model she is herself.
The problem with speaking openly about the issues of bullying, is in order to speak about it properly, you also have to talk about the things which maybe you're lest proud of in your life, or sore points. If they weren't, it wouldn't hurt so much when people made fun of them or pointed them out.
For bullies, Epilepsy is like an all you can eat buffet - I should know. When my Epilepsy was at it's most severe, people used to make fun of my seizures too. I've heard of most things, vibrating phones, mocking speech issues, accusations that people should be put in a mental institution, unfortunately I could go on. But some of the stories Lucy had talked about, shocked even me.
The most shocking story of all however, was the one that Lucy told me about her own experience of bullying. She has incredibly bravely said, "I'd rather you published it so people know what we're up against".
This is her story of 5 years of bullying, which started in 1994 until she had to move school in 1998, because it got so bad, her family and dad in particular asked her if she would like to move.
Lucy developed generalised Tonic Clonic seizures age 8 after she was involved in a car accident. She had the seizures approximately once every 3 or 4 weeks. She didn't get a warning before she had them and already had to deal with adapting her life to keep herself safe.
On top of this, she also had her friends turn on her and they began to make her school life a living hell.
One of the boys at her school went as far as bringing a small torch into school and flashing it in her eyes while she was held down by other pupils, as he thought it would induce a seizure.
It culminated in one of her previous best friends, bringing her mum into school to complain about Lucy, saying that she should have to sit at a desk alone as she was a danger to the rest of the pupils.
The school had to ask Lucy's parent's in to discuss the matter because another parent had complained and it was the final straw for her dad.
The amazing thing with Lucy is the way she speaks about the bullies. She hopes they're okay now and that they don't have serious domestic issues they need to deal with or had a tough childhood.
As if Lucy's attitude wasn't astonishing enough, after leaving school, she went to Oxford and gained a 1st Class Honours degree in Psychology.
She explained that she is just thankful she doesn't have to be a young Epileptic now with all the ways online like Facebook or through forums, young people can be an anonymous bully. She says she always learns new things and finds "new inspiration" from the young people she mentors.
The good news is that for anyone who has Epilepsy, Lucy is the best possible example of the amazing things that are to come and that even if you experience bullying, you can have a fabulous life after school. She has so much integrity, knowledge, maturity and intelligence that she could do anything with her life. She is just simply, inside and out a beautiful young woman.
If I would take the advice of one inspirational friend Tanya, to "keep on learning", you can bet the first person I would go to, to learn more about my brain is another inspirational friend - Lucy.
Lucy has recently gone 3 and a half years seizure free after finding a medication that worked for her. She's now driving, working as a Clinical Psychologist in London and is due to get married this summer after meeting her fiancé at university while they were studying in Balliol College, at Oxford.
After I went for coffee with her, I understood just how much she does for the young people she works with, not just because of the help and advice she gives, but because of the incredible role model she is herself.
The problem with speaking openly about the issues of bullying, is in order to speak about it properly, you also have to talk about the things which maybe you're lest proud of in your life, or sore points. If they weren't, it wouldn't hurt so much when people made fun of them or pointed them out.
For bullies, Epilepsy is like an all you can eat buffet - I should know. When my Epilepsy was at it's most severe, people used to make fun of my seizures too. I've heard of most things, vibrating phones, mocking speech issues, accusations that people should be put in a mental institution, unfortunately I could go on. But some of the stories Lucy had talked about, shocked even me.
The most shocking story of all however, was the one that Lucy told me about her own experience of bullying. She has incredibly bravely said, "I'd rather you published it so people know what we're up against".
This is her story of 5 years of bullying, which started in 1994 until she had to move school in 1998, because it got so bad, her family and dad in particular asked her if she would like to move.
Lucy developed generalised Tonic Clonic seizures age 8 after she was involved in a car accident. She had the seizures approximately once every 3 or 4 weeks. She didn't get a warning before she had them and already had to deal with adapting her life to keep herself safe.
On top of this, she also had her friends turn on her and they began to make her school life a living hell.
One of the boys at her school went as far as bringing a small torch into school and flashing it in her eyes while she was held down by other pupils, as he thought it would induce a seizure.
It culminated in one of her previous best friends, bringing her mum into school to complain about Lucy, saying that she should have to sit at a desk alone as she was a danger to the rest of the pupils.
The school had to ask Lucy's parent's in to discuss the matter because another parent had complained and it was the final straw for her dad.
The amazing thing with Lucy is the way she speaks about the bullies. She hopes they're okay now and that they don't have serious domestic issues they need to deal with or had a tough childhood.
As if Lucy's attitude wasn't astonishing enough, after leaving school, she went to Oxford and gained a 1st Class Honours degree in Psychology.
She explained that she is just thankful she doesn't have to be a young Epileptic now with all the ways online like Facebook or through forums, young people can be an anonymous bully. She says she always learns new things and finds "new inspiration" from the young people she mentors.
The good news is that for anyone who has Epilepsy, Lucy is the best possible example of the amazing things that are to come and that even if you experience bullying, you can have a fabulous life after school. She has so much integrity, knowledge, maturity and intelligence that she could do anything with her life. She is just simply, inside and out a beautiful young woman.
If I would take the advice of one inspirational friend Tanya, to "keep on learning", you can bet the first person I would go to, to learn more about my brain is another inspirational friend - Lucy.
Lucy has recently gone 3 and a half years seizure free after finding a medication that worked for her. She's now driving, working as a Clinical Psychologist in London and is due to get married this summer after meeting her fiancé at university while they were studying in Balliol College, at Oxford.
Friday, 30 March 2012
Pain is temporary... quitting is forever: Tanya's Story
Quitting is indeed forever, but
Tanya's Boyce is the antithesis of someone who would consider quitting.
What she is instead, is the
exemplification of bravery.
Bravery comes in many forms,
physical, emotional, in the form of having to change your course in life, to
have faith that things will work out and to have faith that things will get
better. When you're in a place you don't
want to be, bravery comes in the form of strength. The mental strength of
determination and even the physical strength of resilience.
Sometimes to make things better
it takes inspiration. But the strongest kind of inspiration and the most
difficult to acquire, is the inspiration from within yourself. For someone who
is in pain, in a dark place, you have to be able to inspire yourself to imagine
what could be ahead of you, even when you are overcome by an all encompassing
feeling of helplessness.
But what make's Tanya so
astonishing, is the incredible bravery, inspiration and physical resilience she
produced to overcome an obstacle that would make most ordinary individuals fall
to bits.
But Tanya, has the mentality of
an Olympic standard Pentathlete - determination, inspiration, adaptability and
strength to deal with pain and put it somewhere else in your head in order to
focus on achieving a goal.
While at university, Tanya was on
a training programme as a Pentathlete, at one of the UK's premier sporting
universities, Bath. She was heading on a road for a spot on the British team
for the Olympics. For those of you who are unfamiliar with the Pentathlon, in
includes 5 events; Shooting, Swimming, Fencing, Equestrian and Cross Country
Running. You need to be a naturally talented all round athlete to even think
about becoming successful in the sport.
So when Tanya started to
experience difficulty in even just getting up, never mind training, out of the
blue, she knew something was wrong.
- She had developed Chronic
Fatigue Syndrome.
Sometimes you just get lucky with
a GP or Consultant, they're not all the same standard. Thankfully for Tanya,
she did get lucky and her amazing GP referred her to brilliant Sports Medicine
Specialist, who rather than just writing a report on her, saw her every week
for 6 months.
But what she was told, took
outstanding bravery to commit to. She was told: "This might not work, it's
going to be painful, but it's your only chance. What do you want to do?"
What she did, was grab it with
both hands, overcome, enormous physical pain and depression and it did work.
She seems to have approached her treatment like a gold medal winning Olympic
Athlete. She is disciplined, works hard on her work / life balance, eats the
right things and exercises regularly.
Next time you go out on your
morning run or cycle or play sport and start to feel the lactic acid kick in,
spare a thought for what this incredible woman goes through.
When I met Tanya, while training
for my Sports Therapy qualification, she seemed the kind of person who embraces
life, she was friendly, didn't judge and was just inspiring.
When I go through the routine of
carrying my Hockey Goalkeeper bag the long walk to training, I don't just think
of people with far worse Epilepsy, I think of Tanya and what she went through.
It makes me think to myself "Get a grip Katie". There are some people
who make you feel humble to be in their presence and she is one of the few
people I've met that has made me feel that way.
- It was a privilege by the way
Tanya.
Tanya told me she was
asked something once - "Did she regret anything that happened or feel
bitter about it?"
This was her response:
"In a word – no.
Whilst it would be wonderful to be fighting for a 2012 place I wouldn’t have
met my finace, be doing the youth work I now love or have met some of the
amazing people that have helped and supported me along the way. Some of my
closest and most important friendships have come out of the hardest of my times.
I’ve learnt so much
about myself in the journey and want to carry on learning."
It's true, as the
quote goes, "the most important relationship is you have is the one with
yourself". If you learn about yourself, you learn how you can be at your
best and you can learn how to improve when you're not.
Tanya is far to
intelligent for me to argue with, so I'm going to take her advice and keep on
learning.
That amazing insight
will I know help me and I'm sure it will help anyone like us, who has a hidden
disability like Epilepsy or Chronic Fatigue Syndrome.
As for the lady herself, well in the rather famous words of a beer ad:
"If Carlsberg made role models, they'd probably be Tanya Boyce."As for the lady herself, well in the rather famous words of a beer ad:
I think it's a travesty that Tanya isn't carrying the Olympic flame, so along with the people who inspired me with Epilepsy, I say to her: "This one's for you hun". x
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