The Secret Pain Of Epilepsy
The struggle you didn’t know existed
The word epilepsy conjures up a number of things in the mind of those unfamiliar with its true nature. Rarely, do people realize the tight grasp it has on a sufferer’s life?
Most likely though, the image you have of epilepsy is a person’s body convulsing violently on the floor. Not too dissimilar to a fish out of water.
Indeed, some people with epilepsy are photosensitive. This means lights flashing at a particular rate, or contrasting light and dark patterns may, in fact, induce a seizure. However, this particular form of epilepsy only affects around 3% of epileptics.
Though I am not photosensitive, seizures are present in my life. In the grand scheme of epilepsy, I am one of the fortunate ones.
Until recently, my epilepsy was completely controlled by medication. Before my seizure in late 2020, my last one was well over two years ago. There are people that have multiple seizures a day. I cannot fathom that struggle.
What happens when you have a seizure?
I won’t speak on anyone else’s experience with seizures here. Instead, I will focus solely on my own history…
When I fall victim to one of my epileptic episodes, it is in the form of a Tonic-Clonic seizure. In essence, I lose consciousness and my limbs begin to jerk ferociously. Generally, these convulsions last for around 1 to 3 minutes. Anything over 5 minutes is considered a medical emergency.
I have no recollection of what happens immediately before, except maybe an obscure feeling of being in a dream. I have no recollection of what happens immediately after a seizure at all. I certainly have no recollection of what happens during a seizure, my body may be moving but I am unconscious.
The first thing I’ll remember is not waking up. By the time my brain starts recording memories again, I have probably already been awake for ten minutes or so. This is particularly unsettling to me, as I have usually been talking to people during that time. In this period, I have also been told that I can become quite aggressive and confused. Fortunately, though, I am usually too weak and uncoordinated to be a danger to anyone.
No, the first thing I’ll remember is being told in hushed tones, intended to be soothing, that ‘everything is ok.’ This is, of course, the international signal for ‘something terrible just happened.’
When it’s safe, I will normally need some help to walk, as the muscles in my legs have cramped so dreadfully. It’s no longer necessary for me to go to a hospital, assuming the seizure only lasts a few minutes, so instead I will be taken home to bed. I will sleep for at least 12 hours, sometimes up to 18. I suppose sleep is the brain’s natural recovery process.
When I wake from this beauty sleep, I will normally have horrible pain in my calves and an awfully bad back. To add to this, I often clamp down on my tongue rather hard during a seizure. This particular feature of my episodes once caused the front of a white t-shirt to become almost entirely red. A slightly gruesome sight to say the least. It makes it hard to eat for days but my appetite is often gone anyway. The physical pain is an annoyance. It’s not the worst part of this condition though, not for me anyway.
The mental strain of epilepsy
Epilepsy affects your life in a number of ways. Your career options are limited for a start. I wanted to join the Army, so after I finished school I enrolled in a public services course at college. It was nothing fancy, but, if I obtained certain educational requirements, I knew it would help with my career. I soon learned though, that nothing could help with my military aspirations. Epilepsy nipped that dream in the bud.
This had a knock-on effect on my education. I was already a little jaded on formal teachings from my school days, now I saw no point at all. Not continuing my education is a deep regret of mine.
I could never be a pilot or HGV driver (big trucks if you’re American). Warehouse jobs were often difficult to get as management would not want me to climb ladders, kind of important in many of them. Workplaces often put things in place, admittedly for my safety, so that I could never be alone. You can imagine how something like that would limit promotion opportunities, though of course, no HR department in the world would ever admit that. They couldn’t trust me to open up in the morning or lock up at night, how then, could they trust me to be a manager?
My perceived inability to progress left me bitter towards my work. I am ashamed to say that after trying and failing to succeed in achieving a promotion, I gave up. I just started going through the motions.
Eventually, I was able to give back to my local community by volunteering in a public service role. It was magnificent, I loved being able to finally do something that I was so passionate about. I was making a difference in people’s lives in a very real and very hands-on way.
Since my most recent seizure struck me, I have been forced to take an extended period of absence. This crushed my spirit for a while. I am still not mentally recovered.
Career is such an important part of our lives, perhaps then, It will come as no surprise that people with epilepsy are significantly more likely to suffer depression and anxiety. On top of that, imagine knowing that a bath or shower is a potential death trap. Imagine the embarrassment you feel, knowing you have been the centre of attention at your most vulnerable time and you can’t even remember it.
What if somehow, you finally got on that upward trajectory at work, and now you have to live in constant fear that a seizure will confiscate your driving license for a whole year, preventing you from attending vital business meetings?
What if, at all points of the day, every day, you were far too aware that a seizure brings with it the risk of sudden death? Maybe, in your depression, you would start to feel that maybe that would be a blessing.
What can we take away from all this?
This is just one man’s experience, but I feel it is an all too common one. It’s easy to feel isolated. At best, only 1 in 100 people will understand. Epilepsy charities exist but how many of us are aware of them?
All I would like you to take away from this article is an understanding. Epilepsy means a lot more than not being able to sit through a movie containing strobe lights, as most people suspect. It’s a condition that can slowly eat away at your mental well being. I am proof.
Just by understanding some of the difficulties and understanding that not all epilepsy is the same, you are already making a huge difference. For this, I am truly grateful. More so than you can imagine. Thank you.
