Author James Bailey is only 27 years old but has had close to half a million epileptic seizures in his life to date. Despite this, he has always maintained a positive attitude and a desire to succeed, whatever the challenges.
In this exclusive article, James—whose new inspirational memoir, Light in the Shadows: A Life of Epilepsy, has just been released—provides real-world guidance on how to best care for a child with epilepsy.
Words by James Bailey for Female First.
I am going to be honest and say, straight off, that if you are a parent whose child has just been diagnosed with epilepsy then you are probably already somewhat familiar with the adjustments that are going to have to be made in life, as well as being aware of how to respond to your child having seizures, because a formal diagnosis usually comes after not one but several seizures.
Even so, epilepsy can be a terrifying condition—not only for the child but also those around them. Proper management is essential and the advice I can offer, as a lifelong epileptic, will hopefully bring added insight and support.
Before I touch on the different things to prepare for, however, the main thing to remember is that nobody will know your child better then you do. As such, make sure to look out for any change of habits, behaviour, or even odd poses. In my case, seizures started with an action resembling picking something up from the floor before spreading into my right arm and leading to a superman-like pose. At that point I would black out and not have any further memory of what happened next.
How to prepare for a seizure
All seizures are scary and concerning, and as a parent you often feel helpless. The main thing is to remain calm. During my most recent stay in hospital we found that I was having seizures continuously with only a few seconds’ gap in between, continuing for around 40 minutes before a 20-minute break, and then repeating the cycle again. If you can keep calm then you can, at least, help soothe your child during an episode.
Also, try to keep a record of every seizure your child has, noting the duration, the strength or weakness of the seizure and so on. Truth be told, you can never have enough information available. Any way of finding a pattern to seizures helps you, your child, and doctors.
Importance of staying positive
What always helps me during stressful events, even when I am uncontrolled, is the realisation that there is no point stressing about something because, as they say, what will be, will be. The real thing that matters during this time, and the best thing you can do for everyone involved—especially your child—is to stay positive. This is what your child will feed off and, in time, they will come to find the strength, based upon your strength, to see the condition as a blessing rather than a curse.
As a child, after having a seizure I was never given sympathy. Empathy, yes, but not sympathy, which is very different. Most of the time when I would come around, the first thing I would do would be to look at everyone’s faces. They all looked chilled and were smiling at me, with my mum every time saying, “Look at you, my little soldier”, or my dad and sister saying that I was “like a superhero”. I never saw anyone cry or feel sorry for me. Yes, it happened, but never in front of me, and I largely have my parent’s positive attitude to thank for my ‘can do’ approach to life, despite the severity of my condition.
How you respond to your child’s seizure, and its aftermath, is the most important element of support there is. Even when an epileptic is unconscious during a seizure, a calming voice in the ear, and the feeling of having a hand stroking the head, is so reassuring. We know then that despite what we are going through there is always light in the shadows.
The struggles that may occur in your child's life
There are many leaflets out there that say that epilepsy should not greatly affect your child’s life after an initial adjustment period or, potentially, beyond some degree of ongoing learning difficulties. I, however, often find these are just words, written by someone who has not experienced life as an epileptic, especially in regards to the school environment.
I think it only fair to point out the struggles that your child may face so you can, at least, be aware of them if they do materialise. Every case is different but all parents should be prepared for all difficulties that epilepsy may possibly throw at your child.
As was the case with me, epilepsy can lead to children struggling to learn and retain information. Being a toddler with epilepsy is not nice, but at least at that age the child knows no different. As soon as they enter primary school, however, they will start comparing themselves with other children, who may come across as smarter, more athletic, more sociable and so on. Learning and social difficulties are, sadly, one of the common side effects of anti-epileptic medication, which can bring fatigue and drowsiness as well as making the retention of information more challenging. As I said above, this may not be the case for your child but it did affect me badly in this way, to such an extent that I left secondary education with an estimated reading, writing and speaking age of an eight-year-old. I should, however, also point out that due to the severity of my seizures I was placed on an adult dosage of medication as a young child, simply to keep me controlled. Your child will probably be on an age-appropriate dosage so the impact may not be so great, or have no impact at all.
The other key thing to consider is bullying. Because your child will be perceived as ‘different’ from other children, it is likely that will encounter some form of bullying at some point during their school life. This was certainly so for me, and occurred on two fronts throughout primary and secondary school. I was considered ‘stupid’ by the other children, and I was a target for mockery when they saw me have a seizure.
I have learnt over many years that the best way to counter this effectively is to help your child by remaining positive. Do anything you can that will boost their confidence. Try to push them out of their comfort zone, such as by enrolling them into a judo group, for example (though, of course, do seek medical advice before going ahead). These sort of social, skill-building pursuits will build your child’s confidence as it did mine and, through doing this, you are also highlighting to your child that they have control over what they do and their condition. That sense of self-belief will also help shield your child from name-calling at school, ensuring they let it brush over them rather than take it to heart, which can have a long-term impact on their mental wellbeing.
With respect to learning difficulties, and again based squarely upon my own experiences, I’d advise to try and teach core subjects—maths and English—in a different manner. As I recount in my new memoir, Light in the Shadows: A Life of Epilepsy, becoming interested in fantasy table-top wargame Warhammer helped me massively with my learning. All these different monsters and incredible stories held my attention and got me listening intently to the words being read to me, which in turn led me to reading more on the subject, voluntarily and eagerly. Given that the game is based on a comprehensive set of rules, meanwhile, encouraged the development of my mathematical skills as I was forever having to add and subtract within each game. Of course, not every child is going to love Warhammer and you may need to find a different approach, perhaps reading stories to your child more often or giving them little math quizzes or puzzles, but the key thing is that try to find different ways to help your child develop their reading, writing, and arithmetic.
Don't forget your other children
Lastly, never forget about your other children’s emotional welfare when raising an epileptic child. It is understandable that you are going to need to devote more time and focus on a child with epilepsy but that doesn’t mean it should ever be to the exclusion of their siblings. My parents did a brilliant job raising me, and I know you’ll be just as good, but if I was being critical then I would say that my older sister felt somewhat left out because of all the attention that I received. Indeed, in my sister’s case it has had a long-term impact on her sense of personal security. This wasn’t intentional, but it did happen so try as much as possible to consider all your children’s feelings, and how having a brother or sister with epilepsy may be affecting them.
We speak to author James Bailey to find out more about his life, his new memoir, Light in the Shadows: A Life of Epilepsy, and his ambitions to become a mentor to others suffering from epilepsy, anxiety, bullying, insecurities, or depression.
You have been described by medical professionals as a “miracle”. Can you explain more about why your condition is so exceptional?
From being a toddler and right through my childhood I was having hundreds of seizures a day, varying in length, with the right side of my body ‘shutting down’. In other words, I lost control of my right leg and arm. At that time there was no child-safe medication to control my seizures and doctors said to my parents that there was nothing more they could do. They predicted that I would always need to wear a crash helmet, that I would be disabled, and that I would never lead a normal life. I’m now 27 and in that time I reckon that I’ve had close to half a million seizures in total, and that is putting a conservative estimate on it. Nevertheless, I AM living an active and successful lifestyle. That, to my neurologists, is a miracle in itself. Personally, I think the biggest miracle is the amount of times I have fallen during a seizure and haven’t died or suffered lasting brain damage as a result. I am truly thankful.
What motivated you to share your incredible life story in new book Light in the Shadows: A Life of Epilepsy?
I blame my mum! In 2018 I was uncontrolled again as my medication wasn’t working and, to try to have a little normality in my life after the reintroduction of 24 hour observation, we went to our local pub. My anxiety, however, was going nuts as I knew I was facing many more seizures. We were seated in the corner next to a family whose young daughter had both epilepsy and cerebral palsy. That meeting was like fate intervening. Her heart-broken parents said that they would ‘give anything just to know what she is going through’. They felt hopeless, much to our distress. I look at my mum and she looked at me and then I found the courage to explain to the family my experiences. They melted as I spoke. The feeling of being able to explain a little about how their daughter felt was magical.
What was the biggest challenge you faced in writing your memoir, and how did you overcome this?
It’s difficult to choose but perhaps the hardest challenge was writing the book itself. I started in 2018 and by doing so I have had to relive my entire life: all the events, feelings, and memories just came flooding back. It’s the kind of stuff your mind tries to supress and there have been plenty of restless nights in the process. What got me through this was not only that same feeling that I experienced helping the parents of the girl with cerebral palsy but also knowing full well that this book alone can and will make a difference, not only to parents going through this but everyone else out there in one way or another. That, to me, made it all worth it.
Whom do you see your book benefitting the most, and what would you most like readers to take away from reading it?
Any and all experiencing epilepsy, anxiety, bullying, insecurities, or depression. It will inspire them to become the best they can be. For those without these conditions it will raise awareness and help them understand better ways of dealing with people displaying unusual mannerisms or acting differently than just staring, whispering under their breath, or drawing attention to these people.
You have lived with severe epilepsy since the age of two. What has been your darkest moment, and how have you been able to maintain a positive attitude throughout?
In my book it explains how my life was sorted: house, fiancé, expecting a child, and my business set in place. Then my seizures landed me in hospital and, within two weeks, I had to leave the house (too many stairs), my business teetered on the verge of collapse, and my fiancé suffered a miscarriage due to the stress of me having seizures. This led me into severe depression. This is how I got through it: I looked at my reflection in that hospital mirror, held onto the sink, and I looked deep into my eyes and said, ‘How do I want to be remembered? Like this? No, I have built it all once there is nothing I cannot do again. Snap out of it!”. I have never run from my demons. I rise and like a phoenix. I did indeed rise from those dark ashes stronger than ever.
What would your single most important piece of advice be to anyone who has, or is diagnosed with, a condition that may affect their mobility or quality of life more generally?
No matter what anyone says, never give up! Their words are not in concrete so there is always hope.
You now have plans to become a mentor to other people, of all ages. Tell us more about this and why you think you are especially well-placed to help?
I plan on mentoring all of those who buy the book, or make donations to the cause through my Go Fund Me account. I have set out a five-year plan which begins with this book followed by my mentoring. Through my mentoring I will provide help, hope, inspire confidence, and aid those with epilepsy, anxiety, bullying, insecurities, or depression. My message to anyone who supports my cause, and who needs my help, is this: I will do everything in my power to set you on a path to greatness . I always say that ‘greatness isn’t born; it is achieved”. My end goal is being able to give motivational talks and raise awareness any way possible that anyone can become the best they can be. O one day hope to have my own facility where I can do onsite mentoring with the perfect facilities and resources to gain better results. As I see it, here will be an onsite registered health professional 24 hours a day and CCTV to ensure everyone is protected at all times. I find others often learn to respond better in a different environment. I’m the right person because of my history. I’ve encountered every type of bullying, endured severe epilepsy for as long as I can remember, and have had to deal with major anxieties and depression. In addition, I’ve over five years’ training in martial arts plus an additional seven years of hard-core self-defence. Through this I have gained a deep understanding of the bully’s mind. Finally, I’m a very grounded and empathetic person, and I’ve been told many times that my presence provides encouragement, confidence, and inspiration to others, of all ages. To put it more succinctly, and above all else, I have been in the bottom of that hell hole we can all fall into, and I’ve climbed right back out!
You have described your condition as a blessing. Can you explain what has led you to view things in this way?
If it wasn’t for my condition then I wouldn’t have been led down the path I am on today. I wouldn’t have been able to help those parents in the pub, medical professionals or students with their studies, or have the ability to raise awareness of epilepsy, bullying, and anxiety. I wouldn’t be half as driven as I am to be able to address the bullying side of this condition as my experiences have only highlighted my will power, courage, and determination to succeed and create my own opportunities.
Apparently, as many as one in every 100 people has, or will be diagnosed with, a form of epilepsy during their lifetime. What do you think of current medical and social support towards those with this condition, and how would you suggest it could be improved?
I would say that people should not worry half as much as would have been the case when I was a child, as the amount of research and treatments that are now available is outstanding. Furthermore, you have social media support groups and helplines. There are different types of epilepsy but each has its own support network. You just need to be careful about the attitudes expressed in such groups as, personally, I have often found the view of epilepsy to be negative, which can bring you down more than lift you up.
I do feel that schools will always be an issue, sadly, but this is more down to the lack of resources and understanding towards this condition.
You are a keen martial artist and boxer. Tell us more about your achievements, and how you protect yourself given your condition?
I have reached the level of black belt candidate in Korean martial art Kuk Sool Won and have won gold medals in European championships sparring , as well as silver trophies in judo, which I think is even more of an achievement considering I am was 63kg and was up against an opponent weighing over 110kg! I have instructed classes of over 30 children and adults alike and I’ve ended bullying situations during classes. Taking all this martial arts experience, I have created my own system of self-defence which I have used over many years. This is one of the parts covered in my mentoring, I have trained with some serious instructors in the field. It has also changed my frame of mind and given me a ‘warrior/force of nature’ approach (never giving up even if it is a battle that looks impossible to win).
You are an inspirational figure, but which one figure would you cite as an inspiration to you?
I don’t have an inspirational figure, to be honest. I just strive to be the best I can be. I suppose you could say that I am my own inspiration! I do like the film The Greatest Showman, though, and what it stands for.
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