the truth about knowing

‘So how many of these should I order? How long does one of these last?’ She held up the bottle of pills.

‘I don’t know.’

‘Is there anything you actually do know?’

‘No.’

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blood will have blood: thoughts on #myocarditis

Blood. In my mouth. At 4am.

Of course, when I woke up with that awkward metallic wetness in my mouth, I had no idea it was blood. It was a familiar taste, but not familiar enough for me to identify it immediately.

Before you worry, let me say it wasn’t like it is in the movies, where a character starts off discovering a tiny hint of blood, which then turns into an unending stream of the stuff. It was actually just a teeny tiny stream coming from my gums (I still have no idea why). I spit it out and it kept coming, contaminating my saliva. Not that I’m not used to seeing blood – between monthly periods, a daily blood test (one of those where you prick your finger and let it run onto a magnetic strip), and the occasional bleed at the entry-point of my heart-support tubes, it’s definitely something I’m used to seeing. Just not from my mouth. (Although there was that gap year I took to get my teeth fixed and blood wasn’t a rare occurrence… anyway, you get the point.)

At a loss, I woke my mother up and she groggily advised a water-and-salt mouthwash procedure (salty as fuck, obviously!). So we (well, I) did that, and then got loads of water, and went back to bed. I don’t know how readily she fell asleep, but she didn’t seem to be panicking.

Eyes shut, I lay in the dark, trying not to think. I hugged the pillow to my head, willing myself to fall asleep. But for a while, various scenarios flipped through my mind – you know, the kind of stories gone wrong people tell others about with a malicious glee, passing on that worm of doubt and fear (should you choose to believe them, of course). At the end of the tale, they add: ‘But I’m sure that won’t happen to you’ (apparently this also happens with pregnancy horror stories… I wouldn’t know!) as if that is a disclaimer, freeing them of all responsibility. I couldn’t help it; I was tired and my mental defences were down – but I guess waking up with blood streaming lightly  from your gums after three and a half hours of sleep can do that to a person.

I’m fine now. ‘Fine’ in the sense that I’m not freaking out. But the fear has crept in, like grit under fingernails that I can’t seem to get rid of. Plus, I’ve spoken to my doctor, and he didn’t seem worried, so all is good.

I’m left wondering whether this is how it will always be from now on. Is this fear going to be part of daily life? To be honest, I can’t see myself being terrified with every breath, but then, two years ago, I never saw myself as a patient in a hospital wing either… I’m not a worrier, as such – I’ve been told I overthink things a lot, but apparently that’s  a side-effect of intelligence (yay?) and that is something I can work on.

Maybe if the anxiety becomes daily, you just don’t notice it anymore. Maybe you become insensitive to it. I must confess, I can’t remember whether I was anxious in hospital. Well, I definitely was when I couldn’t breathe, or when I had to do something I really detested – like… er… when I spent three months without getting out of bed, I had to ask someone to come and clean me up after a poop (too much info, I know). Some people might say that was part of the nurses’ job, but it felt really humiliating (both for me, and the person who I called upon to do it). Maybe I’m just very sensitive to that, I dunno.

What’s more, after watching ‘The Fault in Our Stars’ yesterday, I realised that a lot of us – whether we’re cancer patients, suffer from heart disease or have a chronic illness, or even just have to go into hospital for once in our lives – never fully get rid of anxiety or fear. Even if they’re laughing and joking and talking about the latest fashion, there’s a sadness that lurks behind the eyes. Call them ‘warriors’ or ‘fighters’ all you want, but what else are they supposed to do? Sit in a room and cry? Bemoan their fate all day every day?

There are days when that feels like all I want to do, but I don’t. I still get up, weigh myself, eat breakfast, take my meds, etc. I don’t know why, exactly. Back before all this, before diagnosis, there were times when I did honestly feel like I wasn’t equipped to face another day. It felt like there was nothing to look forward to.

It still goes through my mind from time to time – the fear of…I don’t know what it is exactly. The fear of it all being for nothing? Futility? I wish I had some inspirational crap to offer up at this point. All I can say is, it’s amazing what a brush with Death (if I can deem to call it that) does for your priorities. And no, I’m not condoning it in any way!

People with my condition who are on heart support are seen as the ‘lucky ones’. Someone described it as having one foot in disability and the other in rude health, because, once discharged, we get to roam around and do things. Having been through that, I have to say, it’s amazing how hospitals can suck the life out of you. Yes, they are places of healing and all that jazz, but they are also places where you feel so… not-human that actually a spell outside hospital seems the best thing ever.

You’d think that it’s obvious, but people who are ‘disabled’ are people too – they want to listen to the latest crap pop song and complain about it, watch the Olympics or the Eurovision song contest on TV, dream, draw, hate, love, laugh, study, learn the latest gossip, and masturbate and fuck just as much as the next person.

Yes, it’s scary shit. Life and Death, I mean. But no one ever talks about it. Kind of like Fight Club. For all the medical talk – comparing medication, comparing post-surgery experiences while on morphine, discussion about doctors and so on – I don’t think it’s ever come up. It’s all hush-hush, the elephant in the room with sterilised gloves and mask, as if not talking about it will postpone it.

Unless someone does die, of course. Even then, when it did happen once, it didn’t feel like a death, but rather a permanent absence. Maybe because I didn’t know the guy very well. Then again, even his really good friends… beyond the crying and grieving in private, what else can they do? They know, perhaps better than most, that life goes on. Or maybe I’m just imagining things.

I read somewhere that thinking about Death at least once a day is ‘good for you’ – so to speak. It certainly puts things in perspective sometimes. That’s not to say that it’s impossible to worry about anything else when thinking about Death regularly; to me, it seems kind of like painkillers. They don’t always work (trust me, they don’t always work), but when you’re in pain, you take them anyway. Sometimes they work and overshadow the pain, sometimes they don’t.

And still, the fear lingers, beneath it all. In the crabbiness of the man who is getting too old to be eligible for a transplant but still has the machine, in the gaze of the young woman who wants to settle down and have a family but now feels like ‘damaged goods’. The loneliness and isolation is… it can drive you up the wall if you don’t ‘fight’ back with something, filling your life with things to do, and with people. Of course, everyone probably feels like this from time to time, it’s just incredibly accentuated when you’re expected to drop everything and sit around waiting for a transplant.

Having said that, I’ve realised I’ve gone the other way, by choosing to fill my life with writing, drawing and creative stuff that usually involves being alone. Some people might argue that if you’re a writer, you’re never alone (The voices! Make them stop!), but you know what I mean. Then again, I could argue the following:

a) I’ve always been an introverted, grumpy bastard (I trust you won’t find any objections there from people who know me).

b) after living a ‘public’ life in hospital, it’s natural to want to withdraw from the world for a bit. When I say a ‘public life’, I mean there was no privacy. At all. Sure, they had the curtain drawn for certain things in the ICU, but still… no privacy whatsoever.

 

Meanwhile, I’ve also realised something else. My dreams (I mean… while I sleep)  have recently started to turn into nightmares but I don’t wake up screaming. I just watch these horrible, terrible things. And do nothing. I’m not talking horror film material like zombies and ghosts and preternatural stuff, I mean properly terrible things. Things I can’t get out of my head for days on end, sometimes. I’ve begun to wonder if it’s the price I’m paying for finding ways to block out the reality of this situation (mostly by writing) and for trying to tune out of pain (I sing… it seems to help).

Or it’s just cause I’ve been reading the haunting ‘Dispatches’. [that seems like a probable, albeit slightly more boring explanation]

Strangely, all this seems to make reading about fear and trauma in ‘Dispatches’ more palatable and something I feel I can relate to. Or maybe it’s just that he writes that well. Whatever it is, I feel I don’t need to go to war to understand what he meant when he wrote about living with constant fear in Khe Sanh.

terrifying hope

Today, about an hour or two ago, my aunt (my mother’s sister) spoke to my mother on the phone. She informed her that one of our other relatives who is a doctor in the UK (well, I think he’s retired but still working, I’m not entirely sure… anyway, that’s not the point) mentioned that a UK hospital he knows of is top notch and that he would look into whether or not I can get a transplant there.

I’m trying not to get my hopes up, I really am. The disappointment of a rejection could be really bad for me – psychologically speaking. In fact, I’m really scared of hoping that it might happen. When we started looking into other countries, like Spain or the US, I wasn’t this nervous. Sure, I was excited, until Spain didn’t work out, but even then, that rejection didn’t make a great deal of difference to me.

But somehow I’m scared of investing hope in the idea that I might go to the UK. Why? I’m not sure. I mean, I’d get to see all my friends. At least, I’d like to think they’d make the trip to the hospital to see me if it ever materialised into anything more than a vain hope. Also, if it did work out, I’d have a transplant.

To tell the truth, I’m scared of what happens next. The life after transplant terrifies the s*** out of me. I don’t know what I’d do, where I’d go, how I’d even earn a living. Right now, I’m only coping better than most because I bury my head in fiction and learning all day. What’s going to happen when I have to actually start living?

illusions of control: Michael Herr on war #amreading

As a fantasy and ancient history enthusiast, I’ve only recently started getting into reading about modern history; to be honest, I only really started properly caring about the First and Second World War after I studied them as part of a distance-learning course on theatre. So I decided to start reading Michael Herr’s Dispatches, a book on war that I’d actually heard about (I can’t remember where, but I remember reading it was a book that reinvented war reporting).

dispatches-michael-herr

Image of the cover from the Picador website

After struggling a bit with the language (took me a while to get used to reading about ‘gooks’ and ‘spooks’ and ‘grunts’, as well as the ‘VC’, ‘DMZ’, and the ‘NVA’), I really started getting into it. Reading about war reported in such a way that doesn’t glorify it – without getting too lost in the political details either – made me realise how little the human race has changed over the centuries. Of course, this isn’t news for anyone who’s read a bit of history: it stretches back all the way to classical Greece and beyond. Even then, wars were fought for all the known reasons: political control, gain, and of course to cultivate and/or protect certain people’s ‘interests’ (that is, to keep feeding the fat cats and warmongers).

That’s not to say the human race hasn’t created wondrous things- like art – but there is so much room for improvement… anyway, I’m probably not the first (or the last) to realise or say something like this (and, let’s be honest, many people before me have expressed themselves much more aptly), so let’s skip straight to what prompted me to write this post today.

In the section I’m reading right now (titled ‘Breathing In’), right at the end of the 3rd chapter, Herr starts to discuss things like when the Vietnam war actually began, whether certain killings are considered part of the war or not, how the authorities (in America) had claimed it was going to be a short war, and so on. In this part of the book, he describes something that (for me) strikes a terrifying resemblance with what’s going on in the world today. Some people, if they could draw a line from the Vietnam war to today, might even go so far as to point out that ‘the war’ has never really stopped.

Question is, what do we do about it?

 

That fall, all the Mission talked about was control: arms control, information control, resources control, psycho-political control, population control, control of the almost supernatural inflation, control of terrain through the Strategy of the Periphery. But when the talk had passed, the only thing left standing up that looked true was your sense of how out of control things really were. Year after year, season after season, wet and dry, using up options faster than rounds on a machine-gun belt, we called it right and righteous, viable and even almost won, and it still only went on the way it went on.

Dispatches, Michael Herr

academia: what on earth??

It’s recently been suggested that I undertake a PhD. It all began when an acquaintance started listing my pros and cons (more cons than pros… I guess that proves I’m human?) and declared that I should focus on one thing instead of picking up tidbits of projects and losing focus. Sure, I’m not organized, but I like variation – variety is, after all, the spice of life… right? Besides, why shouldn’t I be allowed to do more than one thing at a time? Is there a magical rule that demands I focus on one thing, one subject, one calling, for the rest of my life? When there are so many things to learn about and explore in just one lifetime, do I really have to stick to one?

After a day or two of getting defensive and panicking about my inadequacies as a human being, I began to look into the possibility on a more serious level. My conclusion thus far:

me??? PhD??? What have you been smoking?!

I’ll admit, I’ve never thought of it before – I was quite content with a masters, and was considering a second masters, if I was to proceed with anything academic at all. Though I love learning, I find an academic environment extremely unhelpful and, well, infertile. I have a lot of trouble with academic writing, possibly because I don’t try hard enough or just because I’ve never been interested in something long enough to pursue it academically.

PhD! Can you imagine? Dr. Wolf! (if only they could give them to aliases, hehe) It’s ridiculous, really.

I’ve been told I’m smart and make something of myself, if I just apply myself, but in this case, I doubt it. I’m way out of my depth in everything – even the subjects that interest me. I lack the vocabulary to read the books that would be required to cover the gaps, and already feel like a fraud simply for considering it. I could bluff my way through some conversations with people who are educated to that level, but I sincerely doubt that would be enough to get through however many books and words it takes to research a 3-year postgraduate degree.

And then, just when I’ve decided I’m having none of it, another voice speaks up. Barely a whisper that says why not? What are you afraid of? What have you got to lose by asking about it? Are you just being chicken? Quitting before you even start?

Time for me to go to bed and check my privilege while I’m over there.

Nighttime, bedtime…

After a day of writing random stuff and revamping my blog, I’m now going to go to bed. I crave to continue with scribbling, but I need sleep (mainly because I have an early – well, earlier – morning start tomorrow). As I currently cannot continue writing from my bed, I must bid you goodnight.

I leave you with one of my favourite Youtube videos of all time – it’s incredibly daft but I find it hilarious!

 

26 + 1 years

[I feel I have a lot more to add to this, but if I don’t post it, I might never get this out]

The sum in the title will tell you my age. I am 27 years this day. I crossed the quarter-century two years ago. I have 23 more years to reach the half-century.

For twenty six of my years, the concept of Death has been quite abstract, a distant idea. I’ll admit I didn’t think of Death much, except in the sense of danger – for example, taking small precautions to ensure I don’t get hit by a car when I’m crossing the street, or making a conscious decision not to go down a creepy dark alley when there was no one around. I suppose I considered it would happen sometime, and being a generally healthy individual, it was a part of a distant future. I thought I had Time. Cliché, I know. a lot of people talk about Time when pondering Life and Death. And not only in the mathematical sense.

On good days, I barely gave Death a thought; like the song goes, I was pretty sure I could trudge on and sleep when I’m dead. There would always be Time: to sort out whatever I needed to deal with, time to lose and find myself through philosophical diatribe and introspection. Despite this, in my darkest moments, I was haunted by an inexplicable urgency, that the seconds were ticking by and I was wasting them through sitting around and doing nothing. Perhaps I was aware of the story before it was even written.

Of course, being my angsty and self-obsessed, self, when it came to decisions, I did occasionally sit on the precipice of my consciousness (if there was ever a place for me to go and think, that would be it – a high place, with a killer view and wrapped in silence) and ponder whether or not I regretted things. Things I’d done or said, or things I hadn’t. They do say you tend to regret the things you haven’t done, although sometimes they exaggerate exactly how much. [I mean, in retrospect, I could say I regret not having climbed Everest, but that’s not something I ever aspired to do anyhow – that’s just not me]

Alright, let’s talk about Time.

On February 26th 2015, I was diagnosed with severe heart disease and hospitalised. Eleven months later, through the miracle (if you believe in those things) of modern medicine, here I am celebrating my twenty seventh birthday. I guess you could safely say I never thought that would be something of an achievement for me. Sure, I was (and am) aware of the ableism in our society, while I often took my good health for granted, but it never occurred to me I’d reach a birthday with difficulty – especially in my twenties.

I’ve read a lot of books (not this year, but in the past), and seen a lot of films, and most of them insinuate that introducing sex into your life – at any age – involves a certain loss of innocence. I suppose that is true; first sexual encounters tend to be a big deal, most likely because they become a point of no return. When a grand realisation hits, it’s incredibly difficult to undo. How do you unrealise something? It’s so difficult the verb unrealise isn’t even in the dictionary. However, it does exist in the past tense (or past participle): ‘unrealised’, in the context of unrealised dreams – that is, dreams that don’t become real. Then there’s the word unrealistic. “It’s unrealistic to think you can do it all.” Or another favourite: “Be realistic! This is never going to happen.”.

For me, the realisation of my own mortality has become… well, real. It lives and breathes next to me in the form of an extracorporeal artificial heart. I can even record it for you. Admittedly, I could avoid thinking about it – Death, and the fragility of Life – and most of the time, my thoughts are far from it, filled with (seemingly ridiculous) concerns about food, drink, and company. I daresay it’s easier to ignore when you don’t have a machine that echoes your heartbeat for everyone in the room to hear. But why waste the knowledge? And how do you even begin to stamp out such a realisation? Not being dramatic here, but I know that I could die at any moment. Theoretically speaking, I know that anybody could; things just don’t turn out the way you expect.

What makes it worse is that I know that in order for me to live, someone else has to die. I need a heart transplant; that’s how bad the situation is (of course, I’m doing fine at the moment, or else you wouldn’t be reading this, but you get the point). For a heart transplant to happen, another person has to be declared clinically dead (that usually means the brain has ceased to function for some reason, but the rest of the organs are fine – like people who are in a coma and on artificial life support). It’s not fair. I don’t deserve to live any more than another person deserves to die. How do I even begin to justify being given another person’s beating heart? Sure, my heart is sick, but doesn’t that just displace the grief? Instead of my own family grieving, another one would be. I’m not saying I’m suicidal or willing to die for anyone or anything. Not at all. All I know is I will die, someday. That’s a certainty. But knowing someone else has to die for me to live? It feels almost… vampiric.

I’m not sure what this long ramble is about. On my 27th birthday, I just can’t stop thinking about the doctors who saved my life – in the most literal sense possible. Yes, I’m thankful and grateful for my family and friends who helped me get some help and continue to support me, but how do you begin to thank people who pumped another breath into your lungs? I feel like crying; mourning the loss of another kind of innocence: not so much a frivolity of youth, but rather a feeling of being unstoppable and invincible. As much as I hate to admit it, I’ve never really been one for extremely foolish things – no unnecessary speeding when I used to drive, no extreme sports, no drinking till I can’t see straight. I can’t say I regret that; I just wouldn’t be the person I am if I had done all those things.

That feeling is gone now. Not entirely, but it’s not as persistent as it was. I guess spending half a year in hospital, taking more medical drugs than I’ve ever taken during the rest of my life, and having to watch my diet for fear of thrombosis or internal bleeding, can do that to a person. It’s not that I feel old and broken; I just know that some things I do push the boundaries of what I’m now allowed to. My parents and a close friend maintain that I’ve still not fully acknowledged the restrictions this condition has imposed on me. I’m not sure if that’s denial or just plain stubbornness. OK, I need a machine to stay alive at the moment. And yes, I have to be careful in certain situations, but otherwise… Why should that stop me?