If there is one thing about me that close family and friends can affirm, it is that I am stubborn to the point of bloody-mindedness at times. We’re not just talking a little bit stubborn, we’re talking full on, cut-your-nose-off-to-spite-your-face levels of the stuff.
And one of the things I am stubborn about is not needing help.
Of course, there’s no escaping the fact that over the course of my life I have needed a lot of help, in a lot of different ways, but then, that’s one of the reasons I hate it. Because I am someone who hates relying on other people, who hates to be incapable of doing things.
And yet, here I am, edging out of the mid-twenties and into the late, and I still, regularly, am utterly incapable of doing some things for myself.
Driving. There’s one. I had my lovely pink license for all of ten months before it was taken away again with the promise that I could have it back if I was good and stopped having seizures. Well, here I am, eight years later and in that time the longest I’ve gone without a fit is one month. It was probably a February.
Baths are another one. Seems kinda silly perhaps, but if I want to have a bath, I need someone else around, to check on me. As a result, in the last year I have had one bath, and that was me taking a risk. In my flat there is only a shower, to avoid temptation.
Cooking, too, is an area in which I sometimes come unstuck. If a seizure strikes at 4pm the oven doesn’t even go one, and one of the emergency ready meals in my freezer acts as stand-in. I’ve thrown away unopened packets of meat because they went off the day after I had planned to eat them and on that day I was unable to cook them. Likewise, there’s always at least one onion in the bag when it gets slung out, because I buy as though I am capable of cooking them more often than I actually manage.
The elephant in the room of course, is what I turn into while I am having a seizure. Perhaps surprisingly, given the post history of this blog, it’s not something I talk about a lot on a day-to-day basis. When I do, it tends towards evasion and sidestepping. “Oh, I manage,” or “The children are really good about it actually,” or “I just got used to it really.” We make do. We manage because we have to. I don’t need help.
Except, when the seizures start, when my knees buckle beneath me and I fall down, pretty much the only ability I retain is to more or less keep myself from spilling out of my clothes. (Seriously, the number one thought and motivation if I have a seizure in public is “I will not let anyone see my bra”. Any control I keep over my arms and legs gets spent on that. It mostly works.)
There is no walking, there is no talking. There isn’t always seeing. I am fully dependent on those around me to keep me safe, to protect me – usually from myself. It doesn’t matter that I am a fiercely stubborn person, the kind of person who will carry shopping so heavy that it wrenches my shoulders and refuse to let anyone help me. That I will sit and struggle with something alone rather than admit that I maybe don’t know what I’m doing and need advice. When I have a seizure, any and all agency is stripped away.
It would be poetic, perhaps, to say that my stubborn insistence on doing things myself came about as a result of that dependence. I mean, it would also be a lie, but it would be the kind which sounds good. In all honesty though, I am the student who rubbed out the pencil notes in her English GCSE set texts that had been left there by previous year groups, because I hadn’t written them, so using them would be cheating. Where other people work together to solve problems, I hide myself away and refuse to talk about them until I have worked it out by myself, usually meaning that it takes me ten times longer.
This, then, is the true cost of epilepsy, of seizures. I don’t count it in bruises, or in hours lost (although they would also give a fairly impressive tally). I’ll talk all day about the physical toll with no worries in the world. I can handle that. I can fall down, and get up again and dust myself off and have a bit of a laugh. It’s an inconvenience, certainly. It bloody well hurts sometimes, too.
But a cost isn’t something you joke about. It isn’t the running gag. It’s the thing you hold close to your heart, safe from the sight of others, and also, incidentally, right where it can sit and sear through your emotional defences. Epilepsy means something different to everyone. And for me, at its core, it means depencence. It means, on some level, I rely on other people to live, and there’s a good chance I always will. That’s the cost. I carry it with me everywhere. The knowledge is a ball of fire, and it burns.