There’s something that’s been on my mind for weeks, possibly even months and I’ve got to say it. In fact, if I don’t say it, I may burst. And not the fantastic-firework type explosion of sound and colour that lights up the sky on November the fifth. I’m talking about a messy, scrape-stuff-off-the-kitchen-tiles type eruption, like a spag-bol that’s been left unattended. The thing is, it’s a contentious issue; there are no two ways about it, what I’m going to say is more than likely to ruffle a few feathers. But that’s fine. I’m prepared for that. After all, what is life without intelligent, articulate debate?
Well, as the American’s say: time to ‘rip off the Band-Aid’.
What’s worse: my life, where I experience 2-3 focal impaired awareness seizures each week, or the life of person X who has, let’s say, 5 generalised (tonic-clonic) seizures each day?
I put it to you that not only are they the same, but to compare them is a futile and unproductive exercise. Even though we gain nothing from asking such questions, the practice continues. Each day as I scroll through social media, I see posts along the lines of ‘well, at least it wasn’t a tonic-clonic’, and my blood boils. If there’s been an event – any event – the chances are you feel like sh*t, you’re frightened, and you’re physically and emotionally depleted. Plainly put, when it comes to this condition, there are no ‘good’ seizures; there are no ‘easier’ (or lesser) diagnoses. As people with epilepsy, we have enough to contend with, without contending with each other.
It’s All Subjective
If you’re seizure-free – first of all, let me say how awesome! However, I appreciate it must feel as if you’re now living with the neurological equivalent of the sword of Damocles hanging over you. It must sit above you, threatening to fall at any moment and send you back to the start. Do not pass ‘Go’; do not collect £200.
Suppose you live alone and manage the condition by yourself. In that case, you’ll have entirely different fears to those you might face if you lived with a partner or family. You might have anxieties like not knowing how many seizures are happening or being aware of the details.
If you’re living with a partner and/or a family, you’ll have obstacles or worries that a person who lives alone (or is seizure-free) won’t consider. For example: is this too much for them; am I frightening my children; what happens if I can’t get back to work?
(Oh, and btw, there’ll be more concerns experienced within each circumstance; I’m really only skimming the surface!)
I say all this not to win the doom-and-gloom-blog-post-of-the-year-award, but to remind each of us with epilepsy that no one with the condition has it ‘easier’ (and equally, no one’s epilepsy is ‘more difficult’). We all have it. And let’s face it – it sucks. And sometimes, in fact, a lot of the time, life feels unruly, overwhelming, maybe even out-of-control but, it is manageable.
Please, don’t misunderstand me. I am not writing this from a squeaky-clean ivory tower; it’s a trap into which we have all fallen. But let’s concentrate on changing the conversation. Rather than pursuing fruitless one-upmanship, let’s share the techniques and methods we use to get through the bad days. Let’s talk about our mutual challenges and start asking how each other is doing – you know, in and of ourselves.
Let’s Not Fight
Epilepsy isn’t ‘just’ seizures; as people with the condition, we know this. So, when I post (say on Twitter) about a seizure I’ve had, it’s not-so-much about the injury I’ve acquired, it’s more about the way it has made me feel. I post, not to receive sympathy, but to have the ear of a community who understands how shaken I am on the ‘inside’. My family, while loving and compassionate, will never fully comprehend it – not to the same extent. I’m looking for support, and it’s disheartening to have my pain dismissed.
Each of us – no matter our circumstances – takes medication that makes us drowsy, nauseated, itchy (the list is endless, but I’m guessing you’ve got the gist), we all battle side-effects. My side-effects are no more rotten than your side-effects; they are all vile. It’s the same with the stigma surrounding epilepsy. I face it, as I’m sure you do; there is a shedload of myths to shatter, a stack of barriers to tear down.
To paraphrase Damian Barr, we are not in the same boat, but we are in the same storm. Who is better placed to offer the support needed to cope with the havoc this condition creates than people who are riding the very same storm.
So, this is my call-to-arms. Inter-community support is vital; let’s stop ranking one another based on which type of epilepsy we have, how many seizures we’re having, or whether our seizures are under control. If it continues, we will confuse the message we send out to those without the condition. I hope we can agree that raising awareness of epilepsy – in all its forms, with all of its physical and emotional consequences – is what’s most important.
Copyright © Jo Mackenzie 2020
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