BBC Radio London football commentator, Karl Bates, shares his experiences of being diagnosed with epilepsy, the impact the condition has had on his family and how epilepsy is a condition he lives with not a disability he suffers from.
23-years-old and life finally is back on track, I had lived through my parents getting divorced, my mum sadly dying of cancer aged 38, being kicked out of my house and recovered from a nervous breakdown.
But, now I have a wonderful woman in my life we have been together three years and things are looking good.
I am sat having a brew round the mother in laws, having a giggle……….what on earth is going on, I seem to be in 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 on a bed to another room for an X-ray, why are they flashing lights at me……..why have I just woke up and am still in 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 cant 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 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.
Impact on family
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 have seizures around one every 11 months, thank you brain, as I had to ask for lifts everywhere, due to living out in the fens.
Prime example of this was sitting down with my six-year-old son Ed and explaining to him that I was epileptic.
It had come to the time, where I felt I should tell him about the disability in case I had a seizure, and there was only me and him in the house.
Children naturally presume Dad is superman and Mummy is wonder woman. So, to tell him that I had a condition that could kill me, if I had a seizure in the wrong place and without the right first aid being applied, was never going to be easy.
I turned the TV off, gave 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”.
Off the back of that, I decided that the best way to explain what to do if I have a seizure, was to make it as light-hearted and less scary as possible.
Embracing epilepsy
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.
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 how common epilepsy is.
From a career perspective, I am incredibly proud to say, that EVERYTHING I have achieved has been done after my diagnosis. Here are just a few of the things, I have accomplished.
Performed stand up comedy at the world-famous Comedy Store in Soho, London. I always wanted to have a go, and worked my way up, from open mic sessions at pubs to over 350 people.
Three time champion on Countdown, the iconic teapot sits pride of place on the kitchen shelf, the team there 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 did not need to be in bubble wrap or were slow in some way.
I am a football commentator for the BBC and Millwall Football Club, I have worked in the industry for 15 years, working myself up from a volunteer role as a summariser for Barnet FC, to reading out the full-time scores on BBC1 and commentating at Wembley.
I always mention where I get the chance that I have achieved this with epilepsy, the surprise on peoples faces, makes it more worthwhile.
Millwall have been fantastic in their support, during epilepsy awareness month, International Epilepsy Day etc, we get some of the players to wear t-shirts promoting the events and shared 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.
