A Poetic Response To Absolute Incomprehension

Sometimes, when nothing makes sense aurally, I turn to writing to gain some coherence. Poetry is so personal and has such scope for emoting through form, rather than with words alone. Therefore it seems to me to be the most effective way to express what I’m thinking at a time when my brain aches with confusion and as words (ironically) fight for an order.

Epilepsy makes things difficult to comprehend on 2 levels as it strikes so arbitrarily. So here are two I wrote, one for each level of incomprehension. They do not conform to any specific form and are “no great pieces of art”, but to their credit they do vaguely follow a rhyme scheme…

Level 1: invisible conditions are hard to comprehend in general

Believe Me, I Can’t

Why do I have them, did I hear you ask?

The answer to that question is my constant task…

If I describe my symptoms, I’ll hear you say:

“Is this girl for real? No way, José”

The ambiguity and lack of logic of this thing

Makes it hard to know where to begin

What feelings are relevant and what are not?

Your guess is as good as mine, have a shot.

Are you dizzy? are you ataxic? No you’re fine.

To that I say: mark my words. Give it time.

I may be as Perky as they come today,

But soon enough you’ll see I’m not always this Okay…

And sure enough, eventually – you’ll see

One day I won’t stride in so confidently.

I’ll look tired, my eye will have this glaze

That show I’m seeing life through an incoherent haze

Don’t ignore it, I’m putting on a front.

If I could make sense I’d probably be blunt:

“I wish I could understand your words, or remember his

But I can’t. I feel like sh*t. That’s just how it is.” 

Level 2: ataxia and it’s consequent side-effects leaves me in a general state of confusion. I cannot process what others say, let alone respond coherently.

An Episode:

I feel drugged, or embarrassingly drunk.

I’ve lost my sense of humour & all my spunk.

To retain any energy is not worth the fight,

So of the hopes and aims of the day I have to lose sight.

It is not without will, it is not without trying,

It’s just my mind and body keep not complying

My body goes heavy, my mind as light as air

And with no one in this room these visions do I share.

Panic sets in, here it all goes once more.

These paradoxical feelings again to the fore.

Did I go down or have I survived?

I could not bare having to be revived!

I better leave now before a grand mal hits,

No one gets used to seeing tonic clonic fits…

But nothing or no one in this state makes sense,

So any control I leave to others, hence. 

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A Poetic Response To Absolute Incomprehension

It’s Time For Me To Stop Admitting And Start Accepting

I have epilepsy and it’s time I accepted it. I don’t exactly hide it: pretty much everyone who knows me is aware I have it and I’m not ashamed to say it. But as I of all people should know, talking is the easy part.

 

I can say it and I can talk about it as much as you want me to, but I can’t myself accept it. Notice how I’m saying it as if my mind won’t even give it a name like if I name it I may be labelled or it may actually be a real thing that actually affects me. I can accept the word being associated with me, but not the thing itself and even less the idea that I have to make lifestyle changes to accommodate for the consequences of having it. As a result I have gotten pretty used to failing, and thus have lost my confidence and any sense of what I want to achieve.

 

I didn’t even notice I was having difficulty dealing with it until now. During school my focus became survival and any notion of dealing with having epilepsy was put aside into the later pile. And it (just) worked. I did not get what I wanted, but I left school with 4 A levels. So, why couldn’t I always put dealing with epilepsy in the later pile?

 

I can’t seem to anything, that’s why: University, no; full time job, no; partying like the rest of the 20year old population, no. The only thing I can do successfully for a long period of time is nothing, but who wants that? Every time I try something I seem to end up failing and feeling like a whole load of idiot; like I’m the old me being lazy or pathetic and using my epilepsy as an excuse. But it’s not an excuse, it’s a reason.

It’s not that I can’t do things (at this point in my head my primary school teachers congregate and chant “there’s no such thing as can’t”), it’s that I don’t have any sense of my limits due to my inability to swallow my pride and create a realistic framework of short-term possibilities. I therefore I feel I can’t achieve anything, when really the problem is I’m trying to achieve unrealistic goals. In my head I am still that 16 year old who dreamt of going to Cambridge and becoming a political speechwriter. That girl could work day and night just because she wanted to and she had the determination to achieve her goals. This girl has both the will and determination, but she has less of a capacity to work such hours.

 

People only tend to see the tonic-clonic seizures, the ones you associate with Hollywood epilepsy. But there is a lot more that goes on and is less understood. There’s the petit mal (eg déjà vu, absences, auras etc.), possible knock on illnesses such as migraines, or side effects of medication such as fatigue or memory loss. There are also, of course, mental effects such as lowered self-esteem and panic attacks. For the record all of the above I have suffered, or still suffer from.

I am starting to realise that it is my epilepsy, not me, that has been the hurdle tripping me up at each open door. Well actually, no. More precisely it’s a combination because it is also my attitude towards the whole matter. A year ago any suggestion of me becoming t-total I laughed at and I saw it as patronising to suggest I did part time work at first instead of plunging into a fully fledged career. As my doctor says some things we can’t help, but others we can. I wanted to battle epilepsy not work with it towards success; I was prepared for a fight, I just chose the wrong one. This lack of acceptance has fogged my mind more than my medication. It has left me in a helpless rut, dug deeper because time and time again I have had to quit impulsive decisions that were in reality desperate attempts to keep life as it was before.

 

So. I’ve learnt the hard way. I have epilepsy and because of that I am (for now) physically and mentally suited to achieving smaller goals, which will in time amount to no less achievement. I do not regret this past year; in fact I have a lot to thank my stubborn ruddy mindedness for, getting me so lost. But lost I have been and it is clear now that my end goal(s) do not have to, and should not change. It is my plan of action in the meantime that does. I have to be able to crawl before I can walk.

 

But as I said before, the talking is the easy part….

 

 

It’s Time For Me To Stop Admitting And Start Accepting