You are not alone.
It doesn’t always seem like that though. When that little bubble of fear is swirling in the pit of my stomach and I can’t explain it away to myself, let alone someone else. When I don’t know if I just feel a little under the weather or if it’s the pre-cursor to an episode. When my head is pounding like a jackhammer and I don’t know if I have a headache or if it’s something more sinister. When I wake up feeling a little bit confused and a wave of panic courses through me because the first thought isn’t that I’m just waking from a really deep slumber but is “I’ve had a fit”. When I simply just don’t feel right. These are some of the times I feel really alone.
It’s because I can’t explain the feelings. I can’t put them in to words that make the slightest bit of sense. If it’s my automatic thought that I must be going to fit, then it stands to reason that it will be someone else’s too. So, I usually say nothing. Sometimes I’ll tell someone that I just don’t feel “right” and that maybe they could just keep an eye out for me. Sometimes I say that and, to date, every time I have said that, nothing has happened. Weird. Maybe I should say it every day! So, generally, I try to swallow the feelings down. I try to change the road my thoughts are going down and I try to ignore how I’m feeling.
It’s isolating though. A lot of the time I don’t tell anyone else how I’m feeling because I don’t want them to worry. Because I know that 9-times out of 10, if I say I’m not feeling ok then I will be fine. Then there are the times that I feel like I’m making a big deal out of nothing and that the fleeting expression that just crossed the face of the person I’m telling is proof of that. Sometimes I’m trying so hard to suppress the feelings that I forget I’m actually allowed to have them!
Sometimes I think about all the feelings inside me that are left unexpressed. The little bundle of hope trying to clamber its way through the maze of fear, helplessness and isolation. Every now and then it stands on top of the negative and yells “I’m here” so loud that it’s impossible not to feel hopeful. Then, it’s as if that sneaky, writhing, mass of darkness just grabs it by the ankle and pulls it down again. Hope gets buried, but it’s always there.
Lately, the feelings I’ve long suppressed have been bursting out. Usually accompanied by floods of tears, usually at completely inappropriate times and never anything to do with my epilepsy! It’s like the feelings and thoughts that I’ve worked so hard to hide for so long have got together, merged into one and are tumbling out the only way they know how. If I won’t consciously release them, then they’re going to stage a mass breakout type thing!
It’s draining. It’s confusing. The flow can’t be stemmed and I’m haemorrhaging feelings! I was told when I was in my teens that I felt nothing, that ice water flowed through my veins. Oh, how I wish that were true. I was told early on in my epilepsy journey that I was “pathetic” when I expressed fear regarding my condition. The tears that had accompanied the confession were belittled. So, I suppressed them. That made me an ice-queen apparently. The whole damned if you do, damned if you don’t scenario. Now, decades later the ice has seemingly melted and is leaking out through my tear ducts!
I guess the issue is, the fear, anxiety and untold pain regarding my epilepsy that was pushed in, isn’t exactly what’s coming out! In order to escape the confines of my mind, the feelings are latching on to any piece of negativity that finds its way into my head, however fleeting, and are working my mouth like a master puppeteer in order to be expressed. My feelings of isolation as a teen and young adult surrounding my epilepsy, long buried, are beginning to make themselves known, albeit they’ve morphed into something that seems unrecognisable to me.
Perhaps if I’d known I wasn’t alone all those years ago, then I’d be more in control of myself now. I sometimes feel like a hormonal teenager all over again because I can not rein in the tears of frustration and anger that are rampaging through me. I can not seem to find the appropriate words to express myself properly in situations that demand propriety. I keep hoping that today will be the day that I can get through without tears.
Epilepsy is experienced differently by each person who lives with it. But there are some elements to it that bind us together. Fear, hope, anxiety, helplessness and bruising are just some of the parts that can bring us together. I might not experience these the same way as you, but I do experience them and much more. I know now that I’m not alone. I know now that there are individuals, associations, forums, groups and societies out there that are standing with me. In my adult state, I know that for me, I just need someone to listen. They don’t need to say anything, they just need to listen. So I can say, out loud, that I don’t feel right without worrying how they are going to respond. For you, it might be different. It doesn’t matter if you need something different. What’s important, is knowing that you are not alone.
November is Epilepsy Awareness Month. So, wear a splash of purple and know you’re not alone.
You are not alone.