selfish

I need to put this here for reference. To remember that this actually happened, to make sure it wasn’t some nightmare that my tired mind came up with. It’s not very well-written, but it’s in order:

Yesterday, I invited a friend of mine over for a coffee. She’d returned from her 18 days of holidays in Cyprus a few days ago, so obviously I hadn’t seen her in ages. We talked about what her holidays were like (mostly, she expressed a lot of disappointment in her girlfriend’s parents for reasons I won’t go into).

Anyway, after the main part of the catch-up happened, we started to talk hypothetically about my future – where I might live after a transplant, etc. Since she’s familiar with the mentality in Greece (she’s been here for 16-17 years), she concluded that it won’t be possible for me – as a trans man – to keep living here after transplant. I pointed out that I’m not sure what I want to do, whether I want to stay in Athens/Greece or go back to Cyprus, or whatever. I went on to say that for me, it’s partly irrelevant right now; I just need the heart transplant. The rest can be sorted out afterwards. According to her, I would be much happier if I change my gender back to female (the theory being, if I want to live in Athens and find a girlfriend, there’s so many more women who would accept me as a lesbian than as a trans man).

As if I just flip a switch and go back into the closet. I did that for a girl/woman I was with once; it was the first proper relationship I ever had (and admittedly, it’s probably fucked me up a bit) and she’d said that if I ever started to transition from female to male, she’d leave me. So basically, she was asking me to infinitely postpone being myself, for the sake of being with her. At the time, I’d thought it was something I could put off with a click of my fingers (so to speak). In retrospect, I see that it was totally fucked up. Sure, people are entitled to be with who they want (if she didn’t want to be with a trans guy, she had every right not to be) but surely, when you say you love someone,  you love all of them, not the parts that are convenient? The fucked up bit isn’t so much that she put that choice before me, but the fact I accepted to not transition (for a relationship that really didn’t have much more life left in it than a sheep on the way to a slaughterhouse). Anyway, that relationship had several other issues that I won’t go into right now.

Back to 2016.

Trying to be polite and diplomatic, in spite of the knot that was forming in my throat, I said nothing. At that moment, Mum jumped into the conversation and this information was repeated. I tried to point out that I still don’t know what I’m going to do and move the conversation on to something else. My mother, who seems to think she’s a doctor, stated that after transplant, I’d have to hang around the area near the hospital since they’d be calling me in for checks, etc. I explained that yes, for a while (that is, the first few months), I’d have to be and then I could go live wherever I want. When I said this, my friend asked if I will go to Cyprus, and support my parents, as they have supported me. I said, ‘yeah, sure, for a while, but then I can go wherever I want and get my life back’. She then repeated her point about me finding a girlfriend in Greece/Cyprus if I ‘become’ my old gender again. I pointed out I can live alone; I’m an adult.

This was where it started to turn ugly (well, uglier).

Mum said I can’t go abroad in case of rejection of the transplant. She said that I’ll need someone to take care of me, in case I feel unwell, and used the example of a mutual friend of ours who had a family and had some rejection problems, and then died.

I pointed out that it makes no difference whether you’re alone or not  (and the case she mentioned is a prime example). I mean, if rejection is going to get you, it’s going to get you. The best you can do is get checked and take your drugs on time. The rest is not really up to you, is it? Obviously, neglecting to do the best you can introduces a greater possibility of rejection, but even if you get that down to 0,00001%, living somewhere or with someone, generally living in fear is not going to help. At least, that’s my humble opinion.

Then, my friend (let’s call her RB for ease) said that if I die, they (meaning her, and my parents) might die of grief. Let’s not examine that statement just now.

I then pointed out that if I’m dead, their deaths wouldn’t really affect me. I mean, I’d be dead. I’d have no knowledge of whether they died or not.

Apparently this makes me selfish. Let me clarify: it is selfish of me to live somewhere by myself because I might die and people who supposedly love me might die of grief.

And again: I’m selfish for wanting to live by myself, possibly dying in the process.

Seriously??????

You can’t make this shit up. I have to get out of here.

EDIT: Today, my mother asked whether I’m upset about what was said last night (because I’ve been on edge). I said I have to work, and she said ‘Don’t worry about it now. What we need is for you to have a transplant. We can worry about the rest later’ (basically what I was saying yesterday).

I have no words.

I just want to cry.

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what do you want from me?

It’s all my fault.

My fault we’re here, my fault for not trying harder, my fault for not researching things properly, for not taking care of myself.

It’s all my fault, so I have to sit here and listen to them tell me how useless I am, how short-sighted, how self-centred, how irresponsible (I lost my passport – not exactly surprising seeing as I didn’t use it and consequently forgot where I stashed it), how I’m all wrong, even how my choice of haircut or perfume is shit.

Anything else?

Oh yeah, and then there’s: “It would have been clever of you to choose a name closer to your old name” (because, you know, I picked my name just to be difficult).

Sorry for getting you down, folks. It’s tiring hearing this 24/7.

Like I needed more reasons to feel bad about myself. 

In other news, I miss wearing suits, and playing my guitar. I miss my friends (well, that’s not really news, is it?). I also miss my privacy, and people who know that wearing headphones means ‘Don’t talk to me right now. Leave me alone’.

It could be worse, I suppose.

Friends of mine: “”They could’ve kicked you out of the house when you told them you were trans.”

They could abuse me physically. But they don’t.

“You’re so lucky to have such cool and understanding parents.”

Or I could be dead.

“You don’t appreciate what you have.”

That’s a sobering thought.

“You’re so ungrateful.”

Still, it doesn’t mean that I have to sit here and take all this verbal abuse, right? 

In the absence of a guitar or something I can lose myself in right now, I’ve uncovered some tunes I used to listen to during my teenage years:

 

 

 

mug #philosophy

I have a word mug. You’ve definitely seen the kind before -mugs with a word and its definition or etymology on it? Yeah, one of those. Or the ones that say ‘dad of the year’, that kind of thing. It was a present and I someday plan to use it for my coffee (when I go back to drinking hot coffee as opposed to the cold frappé I’m not supposed to be drinking), so I’m not really complaining. However, it’s just…. I see it and the box it came from (on my desk) every day, and I think the same thing about it every day, so it’s probably about time I say something about it and move on with my life.

The mug in question is white, with black writing. It has, as many other mugs do, a definition of philosophy.

2016-08-14 10.04.27

The mug.

“#philosophy is the study of fundamental problems, such as those connected with reality, existence, knowledge, values, reason, mind and language. Philosophy is distinguished from the other ways of addressing such problems by its critical, systematic approach and its reliance on rational argument. The word itself comes from the Ancient Greek ‘φιλοσοφία’ [philosophia] which literally means ‘love of wisdom’. The introduction of these terms has been attributed to the Greek thinker Pythagoras.”

Kudos to this mug for trying to be precise. It is a very good definition of philosophy (unless you don’t know what any of these words mean  in the philosophical sense:’reality, existence, knowledge, values, reason, mind’). Let’s give it a ‘good effort’ for the definition.

Of course, being a mug from a Greek island, it refers to the etymology (philo from the verb φιλώ “to love” or “be fond of” and σοφία, sophia – “wisdom” ). How can we possibly forget that? Ain’t it great to be in a country that basically believes it invented thinking? I’m not saying that the classical Greek philosophers aren’t important, but it has become a wee bit of a stereotype. Anyway, that’s not why I am mildly irritated with this mug.

My problem with this mainly arises from that line about ‘love of wisdom’. I mean… when was the last time anyone claimed to love wisdom or even be searching for wisdom when engaging in philosophy? Some kinds of philosophy sometimes make you feel like that ‘love for wisdom’ was buried so deep it may never see the light of day again.

Also ‘reliance on rational argument’: What kind of Philosophy have you been reading lately? Maybe classical Greece did attempt a rational approach, but since Aristotle and Plato scarred philosophers for life, there have been monumental changes in philosophy and its ‘reliance on rational argument’! Of course, it’s taken humanity a good few centuries to recover from Aristotle and Plato (and I daresay the world may not have really recovered from their effects!)  but they are not the begin-all and end-all of philosophy.

What troubles me even more is that this mug is part of a design series called ‘Sophia: Enjoy thinking’. The design is great, but I’m not sure about the title. Am I the only one who sees the oxymoron in that sentence?

Enjoy. thinking.

If the sentence had been ‘Enjoy thinking about icecream’ or ‘Enjoy thinking about sex’ or ‘Enjoy thinking about ____ ‘(fill the blank with something you find extremely pleasurable), I wouldn’t be complaining. But seriously? ‘Enjoy thinking’? Most of the time, thinking is hard. It’s often painful, and very rarely pleasurable, so  it’s not something people choose to do often. Even people who do it on a regular basis sometimes wish they didn’t.

And yes, I’m going to stick a quote here because it fits. Back in the last century, in his book Le Mythe de Sisyphe (The Myth of Sisyphus) Albert Camus wrote:

“Commencer à penser c’est commencer d’être miné.”

[Starting to think means starting to be undermined.]

Like Camus says in that same part of the book, people get into the habit of living much before they get into the habit of thinking. In other words, it’s not something that comes naturally, and it most certainly isn’t easy.

I suppose what this all comes down to is that I’m not happy with this mug. The fact remains that a definition for something as broad as philosophy  shouldn’t be something you plaster on a mug. I’m glad that the definition itself wasn’t reduced to a slogan (e.g. the famous “I think therefore I am”) but it feels wrong to stick it on a mug and sell it. More people should be doing it though [philosophy, not selling stuff]. It shouldn’t be something that is regarded as difficult and inaccessible – like ‘high art’ – officially practiced by an elite few locked up in an ivory tower somewhere.

Also – to get back to the mug – isn’t Pythagoras an unconfirmed historical person? That is, a lot of information about him was written down centuries after his death, so most of his activity is unconfirmed speculation?

Anyway, what do I know?

I’m just a writer with heart problem and too much time on my hands.

#writing , war and witchcraft

I watched a documentary on Don McCullin yesterday. He is (or was) a war photographer for The Observer, then the Times/Sunday Times (until the 80s happened – clearly the combination of Thatcher and Murdoch was more than independent British journalism could handle).

I’m sure there’s loads of documentaries on war, war journalists, civilian casualties, but this one seemed to get under the skin. I’m not sure if it’s cause I’ve become sensitive to this kind of material through reading Herr’s Dispatches. Or is it that I’m sensitive to documentaries that mention the Turkish – Greek struggles in Cyprus (my country) and the civil (or well, not so civil) war in Lebanon because that was where I was born? I dunno.

I’ve been thinking (always a dangerous activity): what is that quality war photographers have for staring into the worst, most atrocious face of humanity and actually thinking ‘I have to take a picture of this, people must see what is going on here’? Is it like the impulse that makes it difficult to look away from a car crash?

Since… well, I don’t know when it happened exactly, I can’t look away any more. Something’s changed, and I don’t know what it is, but instead of writing to escape, I’ve started to write and stare it – whatever it is – in the face. It’s almost a refusal to do so. Maybe I can blame the bad dreams. Or maybe it’s the violent gaming (Skyrim anyone?), though I greatly doubt that. Either way, I wish I could say that makes my writing “punchy, and in yer face”, but it doesn’t. Probably cause I like old Shakey too much.

Let’s be honest, though, what other person could write ‘There is witchcraft in your lips, Kate’ (Henry V, Act 5, scene 2) and get away with it?

 

what about now #nowplaying

Sometimes, just sometimes, I listen to this and think ‘yes, that’s exactly how I feel’. Then I realise that it is too late for ‘what about now’, and more like ‘that was yesterday’.

So many what ifs. They inhabit the past, though. I understand that. Doesn’t mean it doesn’t or won’t hurt.

As a dear friend of mine might say… All the feels.

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?

an example of Japanese court #poetry

For Pola of the Escritorium (as an aside to our discussion under this post).

Here’s a sample of Japanese court poetry from an 8th century poem. This was an example given on my course to explain how Chinese characters came to be used in Japanese for their sounds as well as their meaning. (We had a slightly different translation)

Anyway, see how many words English uses compared to the Japanese? It looks like linguistic littering!

court poetry