As I went through the survey I found the questions were all multiple choice and because I'd said no to the first question I wasn't able to tell them about my experiences of public seizures. And I've had them, and have had to learn to deal with them and how the public react.
I've only had a few drop fits. Even if they've changed over the years, I've generally always had a warning, whether it be a flashing light, strong tingles or just a overpowering sensation that I would be hitting the ground in seconds. So I'm very lucky really, for the majority of seizures I had, I've always been able to get into a safe position.
The first fit I had in public was in 1984. I was in London, staying with my best friend. It was a hot day and we were taking a walk in Hyde Park. While we talking and laughing together, I had a strong ice which was followed by the blinding light. I knew straight away that I needed to sit down so told my friend and she led me to the nearest bench, which is when the shit hit fan.... you see it was the first time my friend had seen me have a fit and besides she was still young, we were both only eleven at the time.
I can't imagine the scene. I was doing my best to stay in the recovery position which was the most comfortable while I was convulsing like mad. Only when I started vomiting, my friend and her mother pushed me into an upright position, shoving a cardboard box in my face. All this made the fit much, much worse and it became a battle of wills. I was constantly trying to lie back down on the bench, while they where continually pushing me back up into the sitting position. It all sounds rather comical as I am writing it now but it was actually one of the first dreadful seizures that I've had.
A couple of months later, I was an inpatient at the Maudsley where I was being tested for brain surgery. My consultant had given me permission to go out for a couple of hours, and I was in Paperchase with my mother. I can remember knowing that I was going to fall, shouting out for help and then the next thing I knew my head hit the floor with a great thud and I was watching feet walk past me, even stepping over me. Nobody stopped to help or to see what was wrong. I remember thinking how cruel it was.
I think that I had those fits at such an early age was a good thing. While I never went round with a label saying 'epilepsy, handle with care,' I think it made me more aware. When I started boarding school, there were many times when I would to lie down in the street in the onset of a seizure. I don't know whether it was coincidence, luck or whether I was being looked after by a higher power, but there was always someone with me when these occurred. I was lucky, because I didn't have the strategies in place that I have now. Back then I was only wearing a medic elert bracelet, which didn't make me feel very safe because it only tells people that you're epileptic and not much else.
Just over a decade after I'd my first fit in public, I was on my home from after a long day at my work placement, the information department of a top advertising agency in London. I'd just got to the entrance of Green Park tube, when I had strong complex partial seizure and then seconds later was blinded by the flashing light. I'd had a mobile phone for a year and sods law, this was the first day I had forgotten it! Because of that, for a split second I panicked, walked up and down the street trying to work out what to do....in the end I decided to try and make it to Waterloo and make a phone call from there. Looking back, it was probably one of the bravest decisions I've made because I could have fallen at any time and I still dread to to think what would have happened among the sardines in suits that occupy London's underground.
But here was where I was lucky once again. And by lucky I mean very very lucky. At that point, an old friend of my sister's who'd only met me once or twice saw me in the crowds at Embankment as I made my way on to the right platform. She could see I was in trouble and stayed with me for the rest the journey when I told her that I was trying to get Waterloo so I could make a phone call. It ws a hard journey, by then I was blinded and there were no seats.I didn't get to make the phone call. As we got out of the tube, I knew I had to lie down. Unfortunately because of the crowds, I had to lie at the bottom of the steps that led in and out of the platform. Not exactly convenient, but I had no choice. After that I only remember thinking that I was never going to see my family again, because I was in this dark tunnel and then when the paramedics were carrying me up the escalator I remember seeing everybody staring at me. Even in my spasmodic static, I wanted to stick to fingers up and shout 'what the hell are you looking at? You didn't stop and help did you?' This may sound angry, but it was more frustration than anything else.
When I finally came out of the fit in St Thomas's Hospital, my sister's friend, Emma I think she was called, was still with me and she stayed with me until Mummy got there. What she did tell me though, was that the paramedics were so impressed with the card that I carried around in my purse, that 'they thought everyone should have one.'That card was a work in progress to what I carry around now. Initially the card stated that I had cerebal palsy and what to do in the event of generlised seizure and it had all the emergency numbers to call. Today I carry around a 'Protocol' which has been agreed by a specialist epilepsy nurse at Chalfont St Peter and my Consultant Professor Sander. It states all the different seizures that I experience and the drugs to treat them with. Again it has all numbers to call.
Sadly when I filled out the questionnaire for Epilepsy, when they asked the question are you afraid of having seizures in public I answered 'No'. But the truth is, having seizures in public is never easy, always frightening, but if you have the strategies to deal with it, it always helps. Only I couldn't tell them this.
