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.


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