Having a seizure is a very uncomfortable experience. It’s confusing, upsetting, inconvenient, frustrating, embarrassing, and can result in injury.
There isn’t a lot that can be said that is positive about experiencing a seizure, except that you soon find out who cares for you. Those people soon become accessible and helpful.
I developed epilepsy later in life and, if I’m honest, I am still a little miffed it settled on me. Fortunately, I don’t have seizures regularly. I can go years without experiencing one. But it does make you forgetful, that the epilepsy actually exists within you. There are reminders, of course. Like every evening when you pop your tablets out of their foil. Or when the helpful, and informative, Epilepsy News drops through the letter box. But essentially, it does drift into the background of everyday life becoming less important by the day.
And then, with a rabid snarl, the epilepsy attacks with a vengeance. How dare you forget I exist! How dare you take risks with your life and others by driving! Don’t you know a car is a killing machine in the wrong hands?
But of course these questions come to bear after the seizure. For when the seizure hits, for me, the lights simply go out. That is the only description I have. I’m sorry if you want something more lurid or exciting. But I haven’t got anything more, despite the voyeurism of the modern world. All the excitement is experienced by others. People close by might see me stiffen up, fall down, bite my tongue, thrash about, my lips go blue, or my desperate gasps for breath, or the panic of onlookers who haven’t seen a seizure before. But be assured, I’m seeing none of that awful scene. The lights are definitely out.
And then, like a dimmer switch, some minutes later, the light begins to resume – slowly. The ”dimmer switch” is a good description, because as you would turn a light up slowly, I come to understand what has happened. The text book words I often hear are, ”you’re OK”. When I first hear these words, to be honest, I haven’t got a clue why someone is telling me I’m ”OK” or even where I am.
With a groggy head and a body that really has no control of itself, I am generally manoeuvred into an ambulance. Now there are more people telling me I’m ”OK”. Even I’m beginning to get the message.
I’ve never had the compunction to argue at this stage. I don’t really think I care. If anyone was to tell me I’m ”OK” while lifting my wallet, I sense now that would be something I wouldn’t argue about. So putting me in an ambulance with a cheery smile and a cheesy joke that only ambulance staff can get away with isn’t going to be a problem.
What is a problem, and you can only see this on reflection, is that sometimes you are going to be in some very tricky places when a seizure occurs. My first experience was when I was sat down. Sounds fine doesn’t it? If you’re going to have a seizure at least be relaxing on the sofa. Only don’t have a hot cup of coffee in your hand and don’t be at work. One burns and the others raises questions about whether you can continue to fulfil your role at work.
I’ve also experienced a seizure in the shower, trapping myself behind the bathroom door. It’s embarrassing when you realise you were stark naked when someone you’ve known for years was trying to save your life! And the most dangerous of places, driving a car. Thankfully, someone was able to take control of the situation and subsequently avert the worst of fates. So falling down on the carpet does on the whole seem preferable!
The upshot of these periods in life, generally, is a visit to the local hospital, plus to your GP for a chat about medication and lifestyle. You do tend to visit these establishments more than most other people. Once you come to terms with your condition, these visits become routine.
Of course, there are other implications following a seizure. Giving up your driving licence, for example. Thus, relinquishing your freedom of movement. A bus pass can alleviate this, but it’s no replacement for the sheer joy of being able to jump into the car to visit your grandchildren. To use public transport takes time and planning beyond anything needed when you own a car.
There’s also work. There is a sick period to negotiate. When will you be ready to return, especially if the seizure occurred at work? It takes time for the fuzziness to clear, the last time for me at least two weeks. But what happens if your employer raises concerns about your fitness to complete tasks that before were seen as ordinary? What do you do then? The last thing you need is to be seen as either a burden or as a skiver! You just want to be able to return as normal. But oddly, you find yourself talking, explaining, justifying.
In reality you know you can’t talk it away. You can’t explain it. And you know there’s not much point trying to justify it. However you came by your condition, you now have it and it isn’t going to go away. It will always be there lurking in the back of your mind, waiting to explode! Regardless of the medication you take, it will ride roughshod over your life. It doesn’t care where you are or who you are with. It is the devil within you!
But, despite it’s readiness to pounce, it is important to fight the temptation to dwell on your epilepsy. You have to queue up for the bus in the rain. You have to reorganise your work and recognise adjustments might have to be made. It’s important to fight for what is essentially a normal life, even if the style you’re accustomed to has to be modified.
But whatever the epilepsy thinks about you, you are still you! You still like the same tv programmes, the same music, the same holiday destination. You still love the same people and more importantly, the same people still love you.
You might not be able to beat epilepsy, but like everyone else, you can lead a satisfying and successful life with it.
This article has been edited from a previous blog.