My name is Karl Bates. I am (at the time of writing this) 48 years old, and it has been approximately 10 years since my last Tonic Clonic seizure. When speaking at conferences around the UK, I will quite often introduce myself like this, as just like an Alcoholic or Gambler, it is a life-long condition. Yes, I have not had a seizure for 10 years, but I am still epileptic, similar to if someone who has not had a drink for 10 years is still an alcoholic.
Here is my personal account of how Epilepsy has had a big impact on my life.
23-years-old and life is finally back on track. I lived through my parents getting divorced, my mum sadly dying of cancer aged just 38, subsequently being kicked out of my house by my step-dad and managed to recover from the resulting nervous breakdown.
I now have a wonderful woman in my life. We have been together three years and things are looking good.
So here I am sitting having a brew around the mothers-in-law, having a giggle………. What on earth is going on? I seem to be in the hospital. Why are doctors staring at me, why am I wired up like Dr Emmet Brown in Back to the Future, why is my girlfriend crying?
How did I get here? Why am I being taken from a bed to another room for an X-ray? Why are they flashing lights at me……..why have I just woken up and am still in the hospital? Why is my girlfriend still crying? People are saying I keep asking the same questions. What is going on?
Yep, you have guessed it, I have just had my first tonic-clonic seizure. I have never been so scared in my entire life. I am not ashamed to say it, but I haven’t cried like that since my mum died.
Mentally, I turned from a 23-year-old man to a petrified child in seconds. I just want someone to hold me and tell me everything was going to be OK.
I am now being told I have had a brain seizure (apparently for the 6th time), this is not happening.
This is a bad dream. Well, let’s not kid ourselves a nightmare. Surely this can’t be right, epilepsy, doesn’t that kill people, will I end up with brain damage?
I must have broken a record for the most questions asked in a split second. I then (somehow) fall back to sleep and awaken a few hours later.
Now, still in shock, I am speaking to a doctor and going through what has happened and what they are going to do next.
I am told a lot of people have a one-off seizure and this could be the case. So, I was sent on my way home to recover, and they will keep in touch and monitor my progress over the week. Oh and, by the way, you are not allowed to drive for a year.
Something that I hope changes in the very near future is the aftercare you are leaving hospital petrified. In my mind, I am a walking grenade, and I have no idea when the pin will be pulled.
How do you ‘take it easy’ and recover? There should be a leaflet handed to you, with various charities’ contact details and a few key bullet points explaining the disability.
Anyway, back to a scared Karl, sitting at home, driving myself and Sallie (wonderful woman mentioned earlier) mad, by asking millions of questions, mainly “Am I OK?”
Panic attack. After a panic attack, I do not know how to function. I am in tears again, I am scared, am I about to have another seizure? Will I die, why me, why me, why me?
The above paragraph was the next month of my life, petrified to do a thing in case it led to a seizure.
As time went on, slowly, and I mean very slowly, l became braver. I use the term ‘braver’ due to still very much feeling like a child. I come out of my shell and begin to be me again.
Every now and again, I have had tonic-clonic seizures, absence seizures, and seizures in my sleep, but thankfully, I have only had nocturnal seizures in the last eight years, and only a few. The medication I am on seems to have done the trick.
One thing I have learnt over the years, is that it is not just me that lives with epilepsy, my family does as well.
Too often, people focus on the epileptic, and forget that my wife (told you she was wonderful), my son, and my family and friends are all affected too, especially as I lost my license for five years, due to annoyingly having seizures around one every 11 months. Thank you brain, as I had to ask for lifts everywhere, due to living out in the fens. You feel such a burden on others, always asking my wife for help with pretty much everything, lifts here, there and everywhere and calming me down. Sometimes, when I haven’t slept well for a few days and am now panicking, I may have another seizure. I do wonder how she puts up with me at times. I drove myself up the wall, so god knows what I did to her mental health.
Now, something that had been niggling away at me was how do I tell my son that I am epileptic? When do I tell him I am epileptic, to save him stress, should I not tell him about my disability? Finally, I decided I simply had to tell him in case we were at home by ourselves and I had a seizure. Yes, the conversation is going to be very hard to have with him, but it will be less stressful than being home alone and I have a seizure.
So, on the following Monday when I got home from work, I sat down with my six-year-old son Ed and explained to him that I was epileptic.
Children naturally presume Dad is Superman and Mummy is Wonder Woman. So, to tell him that I had a condition that could kill me, was never going to be easy.
I turned the TV off, gave the bruiser a cuddle, told him I was epileptic and what happens if someone has a seizure. We both shed a tear, but being the brave boy that he is, he cuddled me extra tight and said “I will look after you dad”. We then went through what to do if someone had a seizure and what he needed to do to look after me. Off the back of that, we came up with a game called “Epilepsy”. Yes, we really should have come up with a better name. Anyway, here is what we did.
To help Ed remember what to do, every 2 weeks to start off with, we would play “Epilepsy”. Basically, we would put some music on and start dancing around like idiots and then after a while I would say “oh no, Daddy does not feel well” and I would get on the floor and mildly shake. Ed would then jump into action, moving things out of the way, putting a cushion under my head etc. and I would keep an eye on him and let him know if he did anything wrong. Then (and get this) we would play again, but this time, Ed would say “Oh no, Ed is not feeling well” and he would lie on the floor shaking and I would then look after him making the odd error, and he would have to spot the error and at the end whoever earned the most points won, as you can guess Ed came out on top 😊, we slowly moved the frequency of the game to once a month, every other month, until it was second nature to him.
I implore you to do something similar if you have to explain to a child what epilepsy is. Try and keep it as light-hearted as possible. It will be a lot less scary and what they need to do is more likely to go in and not just rabbit in the headlights panic.
I am not sure of the date, but at one point I decided to embrace epilepsy instead of being scared of it and learnt far more about epilepsy instead of being in denial.
I worked with various charities talking about being epileptic, and openly told people at work I was epileptic. I have spoken at schools, universities, conference centres, even to a professional football team (thank you Millwall).
When you talk about epilepsy, I can nearly guarantee, so many people know someone with epilepsy or have had a seizure themselves. I was amazed at how common epilepsy is.
From a career perspective, I am incredibly proud to say that EVERYTHING I have achieved has been after my diagnosis. Here are just a few of the things I have accomplished.
I always fancied having a go at standup comedy. Many years ago, I watched Billy Connolly on ITV and the love affair began. I plucked up the courage to attend an open mic night at a pub in North London and was hooked, did a few more and then entered a new act of the year competition and got through the ¼ finals. The highlight of my comedy career was performing at the world-famous Comedy Store in Soho, London to over 350 people.
Something I am incredibly proud of is a certain iconic teapot that sits pride of place on the kitchen shelf at home…. Oh yes, I was a three-time champion on Countdown. When I was at school, I would come home and watch Countdown with my mum religiously every day. After her death, I decided that I would go on the show. In my first game, it came down to the conundrum to see who would win as there were only a few points in it. Thankfully, I held on for the win and when I moved into the champion’s chair, I was so emotional. Even now as I write this, I am welling up as I know my mum would have been so proud of me. The team on the show were great and allowed me to talk about being epileptic. I thought it was a great opportunity to show people at home, that people with epilepsy can work under pressure and do not need to be in bubble wrap or were slow in some way.
The main reason that I did not pursue my career in stand-up is because of another passion of mine, football. I am a football commentator for the BBC and Millwall football club. I have worked in the industry for 15 years, and here is how I did it.
Just remember throughout a lot of this, I was without a driving license and still having the odd seizure here and there.
My first job was at Network Rail and the IT guy used to do a stint on Radio Addenbrookes, a volunteer radio station at Addenbrookes hospital in Cambridge. He asked if I fancied joining him as I had a face for radio (cheek of it). I remembered that my mum, when she was at the hospital, listened to the radio when visiting hours ended, so as a bit of self-therapy I decided to join him. We had a great time and I really enjoyed it. Without telling me, he sent a demo tape off to a radio station called Boundary Sound and, before I knew it, we had our own Saturday morning breakfast show. Being on the radio was now becoming an addiction.
So, I thought I would chance my arm and write to the BBC. I sent over a simple CV, demo and explained I liked football etc. and thought nothing of it. A month or two later my phone rang, and my life changed completely. It was a woman by the name of Emma Joslyn from the BBC who worked on Final Score, asking if I could come in the following Saturday and read out the full-time scores live on BBC1. I could not have said yes, any quicker. I do not for one minute think I was that good. They chose me purely on my CV. I am sure it was a case of pure luck; My information just happened to fall in her lap at exactly the right time.
So off I toddled to White City, met Gary Lineker and a variety of ex-professional footballers, watched the matches in the green room and then at 5pm, Ray Stubbs passed over to me and I read out the scores to millions of people. To keep nerves at bay, I simply worked on the theory that I could read, and I could talk. That is all I need, easy. Thankfully, I nailed it. So, my CV went up tenfold and soon after, my wife spotted an advert about football commentary, so again threw my details their way and this time I do think my talents came in handy, as now there was proof, I could work under pressure. I now have radio and TV experience, which put me above the rest of the competition.
I went along to Underhill to cover Barnet v Mansfield Town. I was tasked to just read out the latest scores in league 2 when there was a break in play, but managed to work my way into doing some summarising and at full-time was asked if I would like the role on a voluntary basis. Again, YES was the very quick answer. I didn’t even contemplate how the hell I was going to get anywhere as I couldn’t drive at the time. Thankfully, Barry (the BBC London commentator), who I would be working with, was amazing. We would look at the fixture list, my wife would drive me to a train station in the next village and Barry would find the easiest train station to get me from, and he would pick me up on the way to a match. We worked together for a few years and then Barry moved on to pastures new, and BBC London offered me the chance to move onto the pay role, amazing. Over time, I have worked my way up the food chain and have been lucky enough to have commentated pretty much everywhere from Accrington Stanley to Wembley and am now working for Millwall TV and BBC London. What a ride.
I always reiterate when I am presenting that I have achieved this with epilepsy. The surprise on people’s faces makes it more worthwhile.
Millwall have been fantastic in their support. During epilepsy awareness month, International Epilepsy Day, we get some of the players to wear t-shirts promoting the events and sharing on social media etc.
It has taken a while, but I have come to terms with epilepsy. Don’t get me wrong if I am run down or stressed. In the back of my mind, I worry about a seizure. However, epilepsy will not beat me. It tried, nearly succeeded, but failed.
Epilepsy is a condition I LIVE with. Not a disability I SUFFER from.
