‘Winning the [Olympic] silver medal was, in part, a victory over epilepsy. I thought of all the kids who have epilepsy and think it’s a handicap – it’s not. I hoped some of them would use my silver medal as an example of what they could accomplish. ‘Epilepsy or not, I had made it to Atlanta and stood on the Olympic podium. It hadn’t kept me from winning a medal. It hadn’t kept me from pushing myself harder and faster while out training. It hadn’t kept me from starting competitive cycling in the first place, when so many people had told me then that I couldn’t do it because I had the disorder. “Watch me!” I had said to all of the doubters.’ Tenacious – Marion Clignet, with Benjamin C Hovey (published 2005).
There is no such thing as an easy race in cycling but the hardest race of them all is undoubtedly the marathon pursuit to become world number one. An epic contest demanding persistence, resilience, determination, desire – and a heck of a lot more besides – that is all-consuming, year after year after year. The quest to be the very best means having to defy seemingly insurmountable obstacles and beat seemingly impossible odds. For ConnectedCoaches member and French cycling great Marion Clignet, the long and winding road to the top was a real twister alright, with two roadblocks in particular threatening to blow her dream permanently off course. Diagnosed with recurring epilepsy at the age of 20 and, years later, experiencing crippling bouts of inflammatory arthritis that left her unable to walk and crying in pain, her career was, to some extent, a highway to hell and back. However, in other respects, being plagued by a wheel of misfortune only served to add fire to her belly and propel her to even greater heights. You will never hear Marion refer to herself as a victim. ‘It is often those bearing the scars of the past who are the most driven to prove something. They are the ones with the fire inside,’ she reasons.
‘I am honestly not sure I would have been able to push myself as hard without having epilepsy. Epilepsy was what made me want to prove to the neurologists that they were wrong, and prove to my parents, to others and to myself that I could make a successful career out of cycling. So, yes, it was definitely a motivator.’
This is the compelling story of how one of the best cyclists of her generation faced her fears and won. It sends out a truly inspirational message to coaches and athletes alike: that those who endure considerable adversity in their life can still achieve their dreams, and that with courage and an indomitable spirit, almost any hurdle can be overcome. The blog is for all coaches, not just those who currently have an athlete in their group who has been diagnosed with epilepsy. Although, with 600,000 people in the UK (one in every 103 of the population) having the condition, of which only 52% are seizure-free, that means there is a high probability a coach will, at some point, encounter an athlete with epilepsy.
Marion’s advice and stirring personal anecdotes will serve to educate coaches on the importance of working together to remove each barrier blocking their athlete’s progress, and will motivate coaches so they are able to galvanise those with epilepsy (or any devitalising condition) so they never lose belief in their aspirational goals.
History lesson I phone Marion from the Sir Steve Redgrave meeting room on the ground floor of the UK Coaching offices – named in honour of one of our most decorated athletes. It is a well-known fact that the five-time Olympic gold medal-winning rower is diabetic. Much publicity surrounded Redgrave’s diagnosis of type 2, or adult-onset, diabetes at the age of 35, during training for the Sydney Olympic Games in 2000, where he would win his fifth gold medal. I remember watching a television documentary that focused on his gruelling daily routine and found it inspiring how he refused to let the shock diagnosis scupper his chances of making history. Before this, in the 1980s, Tottenham Hotspur’s Gary Mabbutt worked tirelessly to raise awareness of type 1 diabetes (a lifelong condition requiring daily injections of insulin). You may know that Prime Minister Theresa May is the first world leader to have type 1 diabetes – ‘Type 1 doesn’t change what you can do,’ she has stated categorically. What you probably don’t know – because so many remain reluctant to reveal their diagnosis to the outside world – is the famous people past and present who had, or have, epilepsy. Historical figures suspected of being epileptic include Alexander the Great, Napoleon Bonaparte, Vincent van Gogh, Joan of Arc, Socrates, Vladimir Lenin, Isaac Newton, Tchaikovsky, Theodore Roosevelt, Agatha Christie and Richard Burton. ‘At least I am in good company,’ jokes Marion in her autobiography. In more recent times, those who have been officially diagnosed as having epilepsy include Danny Glover, Prince and Brits Rik Mayall, Martin Kemp and Susan Boyle. On the ‘tic list’ It is not just diabetes. There is a far greater awareness today of mental health problems than ever before – entrenched as we are in a cradle to grave mental health crisis – with a raft of celebrities, sports stars and even royalty having opened up about their personal demons. Online guides from sport governing bodies and mental health charities, and signposting from sites like ConnectedCoaches, have provided those working in the sector with the information they need to enable them to offer effective support to those participants they suspect need help managing their mental wellbeing. Little has changed, however, where epilepsy is concerned. The stigma, fear and uncertainty remain as potent as ever, according to Marion.
‘While most of the world’s diseases and disorders have, in different ways, been illuminated for the public, epilepsy has been left behind and has been enshrouded in darkness for too long,’ she says.
As a two-time Olympic silver medallist, six-time world champion and multiple world record holder, Marion is a shining example of what can be achieved if your name is on the ‘tic list’ – autistic, diabetic, epileptic, arthritic – having lived with two of the conditions herself, but having never let them puncture her spirit. Busting some myths Since retiring in 2004, Marion has become a role model and spokesperson for those with epilepsy, speaking at conferences worldwide to educate the public, businesses and the world of sport about the disorder.
She is keen to dispel the myriad myths so that people with epilepsy do not have to face their struggles alone and so those who encounter someone with the condition have the basic knowledge and a much-needed shot of confidence to allow them to offer their support.
Marion stresses, first and foremost, that through courage, determination and medication, those with all but the severest forms of epilepsy can live rich lives and still chase their dreams. Not everyone, of course, has Marion’s innate strength of character and sheer bloody-mindedness in the face of adversity. Some, through no fault of their own, might need a little or a lot of coaxing to draw out their dormant lust for life and positivity; which is where a good coach who understands the needs of people with epilepsy comes in – providing them with the encouragement to live their lives to the full and injections of reassurance during the inevitable moments of uncertainty. When Marion was first diagnosed, she remembers it as ‘a shattering episode’ that would ‘suddenly, dramatically, and unequivocally change my life forever.’ The emotional crisis she was pitched into could have broken her. It didn’t help matters that she was advised by her first neurologist to not speak about her disorder as she would in all likelihood be snubbed by potential employers. It was as much of a bombshell as the diagnosis, and left her feeling that she would not be able to live a normal life, and that by being dependent on others, she would lose her freedom and independence. Marion recollects how, shortly after this, she made the decision that epilepsy would not control her for the rest of her life, and that she would control it. Cycling, she says, became a positive channel for the aggression and rebellion inside her – a kind of therapy.
Marion celebrates her victory in the women’s points race at the World Track Championships in Berlin in 1999
This worst-case scenario has happened to Marion. One high-speed ‘face plant’, as she calls them, happened at 29mph. Her tooth connected flush on the pavement and snapped in half, held together only by the nerve.
On another occasion she had a seizure in the immediate build-up to a race. Half an hour later she was back on the start line and, testimony to her immense powers of recovery and mental fortitude, ended up crossing the finish line in first place. But her worst crash had nothing to do with her epilepsy, when a freak collision resulted in four broken ribs, with one of them puncturing a lung. Proof that cycling can be a dangerous sport full stop. Coaches can be forgiven for being anxious, from a safeguarding perspective, bearing in mind these dangers. Marion agrees that coach and athlete need to ‘check the relevant insurance policies’ to see what covers are in place, while making other coaches and team-mates aware of what to do if they witness a seizure in training or in competition.
‘The greatest anxiety that a person with epilepsy has is the anticipation of where and when another seizure will take place. This is a rather frightening thought to live with, to say the least,’ she says, before adding that it can be more frightening still for those who see someone having a seizure.
This is one reason why participants may be reluctant to divulge their condition to coaches. Also, because of the stigma surrounding epilepsy, they may be convinced they will be treated differently to other club members – with more barriers put in their way. For instance, despite proving themselves worthy of a place in the team, they may feel they will be overlooked for selection because of the safety fears. This happened to Marion, who was shunned by the United States Cycling Federation in the run-up to the World Championships in 1990, prompting her to switch her allegiance and begin a new life in France. Reading the warning signs So when is the right time to inform your coach you have epilepsy?
‘I get e-mails from parents from time to time asking how to go about it, and do we tell the club? You have two choices. Just be transparent from the outset, or use your intuition. See how the club is run, how they do things and maybe wait until a good coach-athlete relationship has started to form.
‘What I will say is that there are people who have told me they have been refused entry to a club because of their epilepsy, and I find that pathetic.’ She advises athletes, when informing their coach, to do so in a laid-back manner, adding: ‘If you are uncomfortable when you present it to a coach, you will make them uncomfortable. If you are more relaxed and tell them not to worry if they are there when you have a seizure, while explaining matter-of-factly what they should do, then that definitely helps.’ Learning to read the warning signs can sometimes give epileptics the opportunity to ward off a potential seizure by taking medication assigned by their neurologist.
‘If you can feel the seizure coming on then that makes it easier for the coach too because they then have advanced warning,’ says Marion, who likened her warning signs to a lightbulb flashing on an off in her brain, or suddenly losing her thread while in mid-sentence.
She predicted an imminent seizure in November last year, which provided a dramatic moment for the 250 conference delegates who were watching her present on stage at the time. ‘I was giving a conference on transforming obstacles into opportunity and felt one coming on. I told them, “You are about to witness an opportunity that you probably didn’t really want; to see a seizure live between five and 20 minutes from now.” I said, “If you have any questions on what I’ve just spoken about, ask them now, because it might be too late in five minutes.”
‘I did have a seizure and I think they were actually surprised I handled it so well and made a joke of it. I’m in a fog for 10-15 minutes afterwards where I have no recollection of what has happened. Just as I was coming out of it, a guy came up to me and said, “Hi, I’m a medium”, and I remember replying, “Great, is there someone inside me you can get out!” I think he was a bit put out that I burst out laughing.’
It is extraordinary that the person experiencing such an ordeal can remain so calm both before and after, while those in their presence are struck down by feelings of shock and helplessness – testimony to the ability of so many people with epilepsy to use adversity as a character-building tool. Recognising and reacting to a seizure There are 57 types of epilepsy and for people who have the more serious forms, Marion accepts it can be horrendous to live with. ‘When you have a seizure a day, or up to 30 a day, that is a whole different form of epilepsy. But people think all epileptics are like that, and this is a taboo I want to change.’ So how much knowledge do coaches need to possess, and how do you recognise what a convulsive seizure looks like? ‘A coach must be transparent about it,’ says Marion.
‘They have got to warn the other players what it is going to look like. That it might be scary but that they should not worry and they should certainly not ostracise the athlete for it. They are there taking part so that makes them more resilient and in some ways stronger than the others.’
It is important to understand that everybody’s epilepsy affects them differently, though usually a seizure (temporary changes in the electrical function of the brain) involves loss of consciousness, a fall and convulsion (sudden, violent and irregular movements of the body, jerking and muscle spasms). The eyes roll back in the head and the person will have trouble breathing. And because they are unable to swallow, this can result in foaming at the mouth. In terms of the correct procedure* to follow:
- If you notice they are about to fall, accompany them to the ground.
- Put them on their side, so their tongue hangs forward naturally.
- They might bite their tongue but if it hangs forward there is a better chance they won’t.
- Don’t put anything in their mouth: they could swallow it, break a tooth or, if it is your finger, they will bite it – ‘you lose total control of your jaw so you could really hurt yourself or them.’
- If they collapse, don’t move them but make it a safe space by removing potentially dangerous objects or furniture.
- If they don’t collapse but seem blank or confused, gently guide them away from any danger.
- Cushion their head with something soft.
- Don’t hold them down.
- If a convulsive seizure doesn’t stop after 5 minutes, call for an ambulance.
- After the seizure has stopped, put them into the recovery position and check their mouth to see that nothing is blocking their airway.
- Reassure them and stay with them until full mental clarity has returned.
Turn obstacles into opportunities For those with epilepsy, being part of a club offers a much-needed release from ruminating, helping break the vicious cycle of intrusive thoughts powered by an anxious mind. With a coach’s help it is possible to redirect that person’s attention and focus, channelling their energies towards more life-affirming matters and helping them become preoccupied by the far more productive thought that where there is adversity there is opportunity. Please leave a comment below if you have found this article helpful.
And our previous blogs with Marion: