Navigating epilepsy: At the next exit take a nap

Navigating epilepsy: At the next exit take a nap.  

There are many situations and experiences in life that we must navigate ourselves through. School, careers, parenting. Life in general is a series of scenic country roads, fast paced motorways and frustrating traffic jams. There are some situations in life that can be navigated with a sat nav (or a map if you’re old school), such as school or careers. We can often design a career plan for ourselves and can have a clear plan of the courses we need to study. Sometimes you just have to completely wing it, like with parenting, and just hope you get to your destination without a crash, a tantrum or leaving someone at the service station.  

Epilepsy is another one of life situations you must navigate your way through. Unfortunately, there is no road map and a destination cannot be found on the sat nav. In fact there is no destination. There is no real end to the journey. Your wheels are constantly spinning even when you are waiting at the traffic lights. Often, or at least in my case, you are constantly experiencing traffic jams, speed cameras and driving on the motorway in fog instead of driving down pretty country lanes. A solid 90 percent of the time I have no idea where I am going. In all honesty my lack of organisation skills and my inability to have even the faintest knowledge of what is going on is not exclusive to my epilepsy. I never have a clue what I am doing or where I am going. If you don’t believe me just ask my students who will happily tell you I start most lessons with the phrase “what is going on?”.  

Over the past seven years I have tried numerous times to find an easy way to navigate my epileptic life. I have failed each time. The truth is there is no easy way to navigate epilepsy. You just have to drive blind most of the time. When I say drive blind I don’t mean with your eyes closed, that would be dangerous, I just mean without a sense of direction. Experience has taught me that there is no way to know what is behind the blind bends epilepsy provides. It could be a beautiful sunset or a stampede of escaped cows. You just never know. In my case it is normally the cows. Here is another fact I have established over the past seven years, NOBODY likes a back seat driver! When you’re epileptic you often find you have a constant stream of backseat drivers, all of which feel they know more about navigating epilepsy than you do. Those with epilepsy will know exactly the type of people I mean! You get Know it all Nora who’s next door neighbours second cousins dog had epilepsy, therefore making her an expert in your medical condition. She spends her time informing you that once your medication starts working and you get round the next bend you will be fine because that’s what happened to Cecil the bassethound. Take medication! What a revelation Nora, if only I had thought of that! What exactly does she think I have been taking for seven years, Bassets soft and chewy vitamins?. Then you get spiritual Steve who firmly believes that medication is not the answer but meditation is. Steve would happily have you close your eyes and meditate while you tackle the latest bend, most likely resulting in a written off car and a couple of grumpy cows. Finally you get dismissive Denise who has less than an ounce of knowledge about epilepsy and is about as much use to you as a chocolate teapot yet she still feels the need to offer you advice on your navigation skills, with most of her advice revolving around the concept that “it is just epilepsy”, you will be fine if you just carrying on driving, don’t bother stopping for the cows in the road, they’re just in your mind, keep going. The reality is if you carried on driving the cows would be in your car, never mind your mind, and you would most likely end up in a box!.  

The truth is, when you have epilepsy you have to become your own satnav. You have to kick the backseat drivers out at the nearest petrol station, lock your doors and get your foot down before they attempt to get back in. Then you need to learn to listen to your own instincts. Navigating epilepsy will always be difficult. The terrain will continue to change, sometimes in the blink of an eye, but if you follow your gut instinct you should manage to navigate it. That’s not to say there won’t be bumps in the road or traffic jams and sometimes you will feel like you are driving through the treacle with your eyes closed, but the key thing to remember is you know your car and your body better than anyone else. Forget the advice everyone else gives you, they don’t know how you feel. If you feel ok and you want to get your foot down, do it. If you feel overwhelmed by the fog, take a break. Take a nap until the fog has lifted and you can carry on again. Embrace the speed bumps and when you get chance admire the view. The road will be bumpy, the traffic jams will be frustrating but that is life and this is your journey, so slap on your seatbelt, get you foot down and hold on to your knickers because you are in for a long ride.