I want to live

It’s odd how you don’t notice thing sneaking up on you. How days pass and in nearly every way, they seem to mirror the day before, yet they couldn’t have been. Logic alone says that they had to be different from each other, they must have been, as today, my health isn’t the same as a month ago or even the one before that, but it still mirrors yesterday. No matter how good we are at monitoring our health, it still manages to catch us out, to produce effects that we don’t link together, or simply miss in the mellay. Sometimes I wonder if we just choose to not see, to not notice. If we can’t help ourselves from pretending that life truly is nothing more than days that mirror each other. It doesn’t matter if it’s just a series of spasms or the fact that you are having to think about breathing, rather than just doing it, we quietly tell ourselves it’s nothing to worry about, nothing worth even thinking about, then file it underneath the ever growing pile of things we choose to try to forget.

Progressive illness doesn’t always show itself to the world, it doesn’t even really show itself to us, those who are living with it, in the way that many might think. We don’t get huge notifications, sudden mega changes or overnight announcements, it prefers to sneak around, tweaking this or that, then sneaking off somewhere else for a while. It will give us clues along the way, dropping the odd hint every now and then, but as I said, we become all too good at filling them, where we don’t have to see. It’s not that we are hiding from our health, we’re not, well, that would actually be impossible, it’s more that we just prefer to live. No matter how ill we are, no matter what our prognosis, we just want to live and that’s what we do. If we spent our lives worrying, if we noted down every new symptom, every tiny worsening, we’d go mad, so instead, we choose to live. I know without a doubt, if a normal healthy person, felt a fraction of the things I feel in a day, they would be banging down the doors of the nearest hospital, but I, I do nothing, I just live.

There is a mind shift that takes place, somewhere along the line, a change, that like everything else, I don’t know when it started, I just know it happened. I’m not sure if I learned it, or if it’s just another silently documented part of this whole mess I call normal. What I do know, is that there is no point in constantly telling the medics that this or that has happened, or that this or that has changed. They do nothing, they listen, they empathise, they make their notes and they tell us to monitor what’s happens over the next week, month or even year. If it’s bad enough, you call them and demand they change the dose of your medications. More drugs, more medicine to mask, to cover, but never to take away. But it never stops, it’s always changing, even when you think things are stable, when you think you are on a plateau, you simply wake up one day to the truth, it never stopped at all. Like a serpent, it has been winding its way around inside you, flicking switches, changing junctions and disrupting your life silently, until all those changes line up. Then it happens, that breath that you can’t quite take, that pain or that spasm, whatever it is, it happens and you know without a doubt, that once more you’re aware, that once more the medical mask has slipped and reality crashes in again.

It often feels like you’re living in some sort of maze that was constructed by an evil genius, without any entry or definitely no way out. You know there is no entrance because you wouldn’t have chosen to enter, and the exit, if it exists, it’s hidden so well, that even after years of searching, you can’t find it. Yet, still, we choose to live. Many might ask why, well what is the point of an existence where you see no one, do nothing and serve no clear purpose? Trust me, I have asked that question again and again, but the answer comes back the same, no matter the pain, no matter the isolation, no matter of anything, I want to live. Life doesn’t have to have a purpose, it doesn’t have to have meaning, life is just life, it’s up to you what you do with it, but it’s not up to you, what it does to you. We just have this one shot at it, this one messed up chance to find out why you’re here, to find out what it’s all about, and if you don’t grasp it with both hands, and hold on tightly, then more fool you.

None of us choose this life, none of us want to live this way, but that doesn’t mean we don’t want to live. There will be a time when that changes, a time when I can no longer hide those things I don’t want to see, and no doctor can hide them for me. But as long as every single one of those mirrored days shines back a smile, what does the rest of it really matter. Every day my health gets a little worse and every day I still find my smile, every day I find my happiness and the happiness of others. If you really want a point to all of this, then there it is, the sharing of happiness, even in the bad times, as if there is still happiness, the bad, somehow, doesn’t matter.


Please read my blog from 2 years ago today – 24/09/2014 – Ouch

I lay down last night and in second I was up and sitting on the edge of the bed, I had the worst spasm I have ever had in my diaphragm. Despite all my meds, I was in pain, real pain, not the sort where you are just rubbing or massaging the area, it was the sort of pain where I had to stop myself…..