The Deep End

Sometimes it’s difficult to know how to start these things. So I guess I’ll start right where I seem to have found myself lately – the deep end. Bring a boat, or you may drown.

On the 1st of June I went to see when my next surgery could be done, and what damage the procedure at the end of April had caused. They’d go in through my chest the next time, I thought. 50% success rate. Risk. But a manageable one.

Only he didn’t say that. He said sorry.

He confirmed that the procedure in April had not been a success. He then said that the surgery I had pinned all of my hopes on was way too risky for him to attempt, even if he went in through my chest. When he told me why, my logic agreed with him. He said there were no medications left to try. That wasn’t an option. No conventional or routine surgery was an option either. And he said sorry. And my heart broke into a thousand pieces, not because of all the other implications attached to that, but because I just really wanted to make it to another Bastille gig, and I knew that meant I’d never be well enough to go. Whatever happened at the gig I went to in May seems to have marked the start of a decline so severe I’m now housebound. Most days I can hardly stand. I am too dizzy to lift my head, and don’t have the energy to do anything. I am too breathless to eat, lungs crackling as fluid decides they are a great place to set up camp… My vision fades to black. I spend most of my days in an involuntary sleep. My cardiologist looked at me as we discussed this and just said sorry.

And I watched it all go. Goodbye degree. Goodbye… Everything. I sat in that room and lost it all. I sat, the two health professionals talking to my mum, and I have never felt so lost or alone. Nobody saw me cry. I was grateful for that. My mind went somewhere nobody could reach it.

But my cardiologist is a DUDE. He has done some ground-breaking research in his career and still likes to push at the edges of what’s possible and what isn’t. For example, the procedure he carried out at the end of April was so unheard of I couldn’t find it on google, and the other cardiologist I discussed it with told me it couldn’t possibly exist or be attempted because it would kill me (he wasn’t far off. It’s ruined me a little bit).

I could tell by the look on his face that it was going to be a decision I shouldn’t make lightly. He told me there was one more thing, that this really was the only thing left to try. He didn’t know if it would work. It wasn’t something he wanted or would usually ever think of doing in someone so young. But he was offering me hope in the middle of a void, and before I even knew what it was I took it. I hung from his words.

One thing left to try. I’m doing a degree in biomedical science, so I knew what he was talking about, and I couldn’t actually believe what he discussed was possible. It is, by no means, conventional, but maybe one day it will be. So I listened. And I was terrified. But I was desperate. So when he asked me what I thought, I said yes. Not quite that quickly, and not quite in those words, it was more of a “If you’d told me about this a month ago I’d have told you no way. Now, I want to set my heart on fire. Don’t really have much to lose.” But he told me to think. He told us to go away and to email him. And he just kept apologising.

Things got more overwhelming than that. We decided I needed the surgery within 3-5 weeks of that conversation. The NHS emergency wait list is 12 weeks. The private waiting list doesn’t exist. They use NHS theatres in the evening, have their own ward in the same hospital, and it could have been done within days. He told us he didn’t want us to have to pay. He said sorry over and over and said it wasn’t fair and it was wrong, and you could see that the idea of it made him uncomfortable and very bothered. But we admitted there wasn’t any other option. I couldn’t really speak after the appointment. My mum talked a lot. I put in my headphones and played bad_news quite a few times, until the emotional bottleneck in my mind turned into a torrent of feels.

Turns out that if I wait for the NHS, the surgery cannot happen until NOVEMBER. So that made the decision for us, I guess.

I’m not going to name the price here, but it’s way, way too much. My family can’t afford it. The money will come from my uni fund and goodness knows where else but they say that doesn’t matter, they’ll find it. Finances are going to become very tight. And my self hatred makes this a huge moral dilemma, because I cannot justify that expense on me. It’s only me. When you struggle to attach any value to your life at all, seeing such a large one after a pound sign is very, very hard to handle. I already owe my family enough. I already felt guilty. This guilt became bigger than me. It crushed me. It was almost a physical ache. I asked them not to pay, I told them not to do it. We can’t afford to but we also can’t afford not to. What made me feel even more guilty is that I am so desperate to have the life that this procedure will allow, that despite all of that I still want it. I hate myself and I hate this situation and it’s just… Breaking me.

In order for me to have a life, I have to wreck my family’s… And they will always, always come first. So I found myself in this weird situation. With hope – hope I daren’t take but couldn’t let go of – incredibly close to ending my life. Genuinely I did, to save them the money, to stop the guilt. Because we don’t know if this will work. What if it kills me? It’s going to kill the part of my heart that tells it to beat, what if I go down with that ship? Ideally I need to go into hospital 24 hours before the surgery to be stabilised with IV medication, but we can’t afford that. So what if I almost die afterwards from another health hiccup like last time? What if I need intensive care? What if it all goes wrong? Suddenly this huge value has been attached to my life and I just can’t handle that. I can’t understand it. Morally, this all just feels so wrong.

In the middle of all that, I almost died again. I was meant to be seeing Imagine Dragons in concert that night, but was already too unwell to go. Skippy started a riot, and my blood became acidic in response. I found myself in a resuscitation unit, concern slowly rising, deteriorating after treatment. My heart was such an idiot that my veins were too empty to find. They stabbed at my arteries instead, and even they were hiding. I thought that was it. Honestly, I thought I was going. My mum put in my headphones and played me Bastille, and my mind went somewhere else – she witnessed the power of their music, and from that point onwards people realised the headphones became as vital to my survival (mentally) as the IVs (of which there were 4, and at one point more I think). I lost the ability to move. I barely had the energy to breathe. I drifted off to the sound of Bastille, becoming unconscious and totally unresponsive as my body bailed on me. Panic happened, but not in my brain. I lost myself in the songs. The critical care guys got involved. I woke the next morning unable to lift my head without the world going black (my blood pressure was way, way too low despite a lot of fluids, which meant that rather than me being dehydrated, Skippy was just too knackered to play fair). I told them I was leaving that night because I needed to vote. I did. They had to wheel me to the main entrance because I couldn’t walk, and just crossing the road to go vote made me almost pass out. But hey, I voted. And then I tried to wrap my head around how on earth I’d made it through.

Awful, tragic things are happening in the world, and I always shut down my own thoughts and feelings whenever I hear of them. I have no right to hurt over my situation, I have no right to cry for it. How dare I? Given everything that’s gone on in my home country alone recently how dare I? And yet, the sinking feeling will not stop intensifying. So I just put in my headphones and go somewhere else.

Upon reflection, should I have gone to see Bastille that night? That’s tough, because none of us had any idea Skippy was going to do what he did. He’d never beat like that before EVER or done what he did then. I’m mortified that it happened there. Waking up from 10 minutes of your heart LOSING ITS MIND and seeing Bastille on stage as you open your eyes is kind of a good way to wake up though. But I’d rather have remained conscious. I feel awful for all the fuss on that night in that venue and everywhere since (especially the trouble taken by two members of Bastille and their management to make me a video).

I don’t know where I’m at.

My surgery should hopefully take place at some point next week, and I only found out I needed it two weeks ago. I want it more than anything in the world, and I really don’t. The main reason I want it is because I want to be around and well enough to go and see Bastille again at some point in the future, because a) I am determined that my heart won’t win this one, and b) I’m kind of living for that. Music is powerful, live music is kind of BEYOND magic.

There’s been a lot more going on, but I don’t want or know how to share. Please understand if I don’t post for a while. Sometimes that means I’m on a rollercoaster I don’t know how to get off of, and I just need time. It probably also means I almost died again. Today it also means that everything keeps going black (or Skippy drags me to an involuntary sleep) and then I wake up mid-sentence with no idea where I was planning to go with this post next, hence why blogging is also very confusing and difficult and takes FOREVER right now.

I have no right to complain right now I know, and I hate myself for feeling bad but I just can’t turn it off so please forgive me, I’m trying to get a grip and I just keep spiralling downwards. I’m more upset about London today than for myself, and I hate that my mind still dares to let its thoughts drift to my current situation. The world needs a reset button I swear. 

No way but through.
P.S

One of the most incredibly humans I have had the pleasure of meeting has a little company that makes films, and she is so lovely I recommend checking it out! She’s proof that young minds can create some pretty powerful things, and the idea for her first short film touched on several important themes (I’m actually going now I promise).

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Comfort of… Bastille?

“As the world falls down around us

Give me something to remember

I am holding on

In the back of my mind

For dear life, dear life

Holding on

In the back of my mind

For dear life, dear life

Oh I, Oh I

I am holding on for dear life

Oh I, Oh I

I am holding on for dear life”

Bastille, Comfort of Strangers

Words fail me a little bit at this current moment. When I heard those song lyrics, I stopped dead. Everything melted away, and my brain curled up in those words like a comfort blanket. I had been fracturing, bursting at the seams, suppressing emotion that I couldn’t allow myself to feel but was most definitely there. I was torn. I was on the edge of letting it all go, of falling apart. And then I got a message from a friend asking if I’d heard Bastille’s new song. Immediately, I almost laughed out loud. Whenever I hit a tough time or get bad news or something, Bastille (the band whose music ended my emotional isolation in the back of an ambulance when I was… 16? if intrigued, see this post) seem to drop a new song or a new album.

I searched it online. Hit play. Listened until the chorus played, and this song just… took me. A total calm rose up and engulfed me and had I been alone, I may actually have shouted YES at the top of my voice. It was the same feeling I got when I heard Pompeii for the first time in the back of an ambulance, when I heard Good Grief for the first time as I walked out of a hospital ward after almost dying and being told that waking up everyday was pretty much like playing Russian Roulette… the same as I felt when they dropped a new album a day or two after I’d had surgery and was laying in bed writhing in pain until that haunting voice played  through my headphones and removed me from the world for the entire length of time it took to listen to all those songs.

I’m pretty sure this latest song is written about being in a relationship with another human (I may be way off there), which I most definitely was not, but the beauty about all forms of art is that people are free to interpret that art in any way they want. I have no doubt that this song said something to me that it was never intended to say when it was written. But it sort of woke me up to myself, it gave my brain an ally, it gave me words I could twist and put to something I couldn’t verbalise or even accept before. It was like a “Eureka” moment… It brought all the guards in my brain down and finally let me admit that I am not ok with how things went, I am not “not feeling” all the things I think I should, I had simply, as my counsellor noticed I do often, dissociated myself from the things that hurt too much to go near.

On the surface yes, I can ignore how I feel, I can tell myself I’m not disappointed yet, I can try to ignore the fact that three (wait, how many days ago was Wednesday?) days ago I had heart surgery (and not only did it not work, but I somehow feel worse, and the second part that needs remodelling if we have to attempt again was too close to my phrenic nerve so… asdfghjkl… and I have no idea what to do or where to go and it changes all of my imagined plans because is this all I am now? A tachycardic, fluid retaining, coughing, breathless, swollen, oedematous mess?) but in the back of my mind I am in the middle of a storm, clinging to this tiny shred of something that remains. Hope? Maybe. And I am being battered by emotions (not only from the past few days, not only from my health. There’s a lot hanging around and churning around back there), torn apart, ripped apart, withering, worn out, exhausted, beaten, probably ready to throw in the towel and walk to the Grim Reaper with open arms. In the back of my mind, in the part I ignore, there is a battle, and I am holding on for dear life. Paralysed by it all, completely lost, completely terrified, and just clinging to anything. That anything, right now, is this teeny, tiny hope that there is something that can still be done. And I didn’t realise that, couldn’t accept that, couldn’t work out why I wasn’t entirely happy and felt tense and bothered (or even admit that I was any of those things)… until I heard those lyrics and my great big deluded, ignorant conscious mind turned around and went, “oh yeah.”

And then… click. I am disappointed. I am falling apart. I’m devastated. I’m terrified. I’m wondering if I will ever be able to have a job, what will happen about the final year of my degree. Will I ever be able to go for a walk again? In the back of my mind I am still feeling all of the things I refuse to let myself acknowledge, and they have been burning slowly, like a fire. Those flames have silently eaten away at all the foundations that held me up. And the thing is, before I can rebuild, I need to crumble. Just demolish the wreck that is left and build something new to take its place, before the rot spreads. That’s kind of how I work. But I’m really great at pretending to everyone, including myself, that I am fine.

And then along comes a song, written by people who I never have or will meet, about a situation I probably can’t relate to at all… And it says all that needs to be said. Enough for me to stop hiding from myself, to let down the barriers, to accept what I am trying to shield myself from and have in doing so let silently destroy me. Weird. Awesome… Bastille.

Medicine saved my body. Music saves my soul. In ways that nobody and nothing else can. (Hey, it moved me enough to post twice in a few hours rather than twice in one month). It kind of brought me… Home.

I was so lost, and I didn’t even know where to turn or what to do or how I felt or what to reach out for, I was just crumbling and trying to pretend I wasn’t. And a song I’d never heard before just shut me down. Totally. Shut all of that. Down. No idea how long for.

This is why I never go anywhere without headphones.

 

Just In Case

I’m not writing now because I have anything in particular to say. I’m writing because the day after tomorrow, my cardiologist is going to do a pretty new procedure (new enough for Google never to have heard of it, and for it to be a last resort that he didn’t want to do on someone so young) which involves remodelling a small area of Skippy (my rebellious, idiotic heart)… if my heart behaves enough for him to progress that far (while I’m under anaesthetic other heart things are happening first). You’re probably expecting this post to be about that now. Which makes sense, because you probably expect it to be my number one topic of thought at the moment. It isn’t. It has been blown far, far out of the water by… words, actually.

Before you read this, I need you to know that my life is great. I know that. I know I’m lucky that my situation is not worse, and that there are plenty in ways in which it could significantly be so. I am frustrated that my mind is beginning to let other thoughts shout over that reality. Forgive me for letting that part of me write this post. I am already embarrassed by many elements of this post. Ignore it, if you will. (Oh and obviously, because that part of me wrote this… Trigger warning).

The day after I was due to have this surgery previously, just after I was starting to function after completely melting down about its cancellation, I opened the front door while home alone, and a serious crime was committed against me. I had several uni deadlines the next day, and my achievement of the century is that somehow (after being with the police until late at night, and sitting with a detective and then a counsellor) in 2 hours, I wrote 90% of a 1,000 word essay (which I’d admittedly had over a month to write, but my head has been BEYOND a mess, and I haven’t been great at… humanning… hence the complete lack of posts), referenced the entire thing and wrote the last 300 words within 20 minutes, and submitted it with 7 minutes to spare.

Three days later it all became real, and while my parents continued freaking out and buying security cameras and locking every door and window in the house (too late for me, no comfort at all, couldn’t take back what had happened), I turned into a MESS. It doesn’t matter how. It doesn’t matter how worrying or completely crippling my mental state was, or the things the mental aftermath of that crime stopped me doing (accepting human interaction, leaving the house, tolerating my own existence, to name just a few. Just talking about it to the police on the phone in the days afterwards made me shake with fear and fight the urge to vomit).

And I’d love to tell you I got over it, but it continued to eat me. And slowly, just as my world was starting to turn again and revision (I call it revision, but actually it’s trying to catch up on the 160 hours of lectures I have to make up by the 3rd of May when my first exam occurs) began to become an actual thing… I went to stay with an individual I can only describe as my idol. Family. But also a heroine. My idol, since I was 9 or 10 years old. And I was torn down with words. Three hours. Every element of my life, of who I am, was attacked. Mainly my health. My Achilles heel. And I was left… Empty (and writing a suicide note at 3am, a feat I’ve never managed to complete before. If a kind dog had not limped into the room to demand a cuddle and let me collapse into his fur hysterically sobbing, I may not actually have made it much further along the road of my life).

I can’t repeat the words that were fired at me. They attacked parts of me I don’t wish to share here, parts of me I hide (and so, were commented upon incorrectly and in a VERY damaging way). They were enough to cause outrage and horror among the few family members who I repeated them to, even parts of the half of the family I will never belong in (they all have blood and marriage, I have a deed poll). Enough for them to understand and not tell me I was an idiot when, 24 hours later, my attempts at words were still washed away by great sobs that I could not control.

My brother in law had cured my fear of all human contact with his greeting hug earlier that weekend, and, suddenly able to find comfort rather than terror in human contact, I found myself wrapped in my oldest sister’s arms apologising profusely for my tears (because I don’t cry) an awful lot, and being told they were more than justified and she didn’t even know what to say. And you’ll be all “oh for goodness sake they were only words”. But they were words attacked and destroyed and invalidated every part of me.

An individual I until that point idolised, accused me of making everything up to get attention – my health issues, the serious crime (even asked me if I had enjoyed it)… (and then told me they ignored either topic because they didn’t want to “feed me”). FYI, that’s so ridiculously absurd, because the police have forensic evidence, and also I’m not sure you can fake NEAR DEATH or want to experience NEAR DEATH especially when you have counselling for a phobia of HOSPITALS. That individual blamed me for everything, every problem within my parents’ household, despite that individual not living there or seeing anything they were commenting on. Told me I resented them for almost dying because it took attention from me (actually, it was one of the most traumatic periods of my life, because somebody I loved almost died, and I was old enough to know that, and too young to be told what was going on. I still burst into tears at any reminder of it even now – one of the few things that never fails to bring me to tears, because I was too young for people to realise it affected me, and I’ve never really dealt with it)… And it went on, and on, and on. And I had no emotional ground to stand on, nothing to fall back on, to rest against, to hold myself together. I was washed out. Empty. I had gone there to be by the sea (which was AWESOME) and be with my brother in law (my brain decided he was the only safe human in the world for some reason) and to heal. I had gone there because that home always felt like my own. It felt physically and emotionally safe because of my brother in law and the support I had received there previously from my heroine.

For a few days, I was suicidal. The person described to me was not one I felt deserved to live, I was told over and over in that three hour conversation that basically people would be happier without me (in different words, but that’s what my self-hating brain heard). All I could do was cry, and sleep. My appetite is usually far greater than would be expected for someone my size, but I couldn’t eat more than a few forkfuls of food. And then I went back to a really weird place. A place beyond the hurt. A far more alarming, more troubling place, in which even my counsellor couldn’t really reach me. I shut down. I couldn’t think at all. I couldn’t function. I felt heavy. I stayed in bed, I slept all day. I’d try to get out of bed and just sit on the edge, no thought about what came next, no thought about how odd that was, just… Empty. Stuck. No idea how to be. And so I’d just fall sideways and, feet still on the floor, sleep again.

I didn’t wash for an embarrassing number of days. Didn’t even change my clothes. Couldn’t eat. No work. Goodbye “catch up/revision” plan. Guilt. Which everyone around me fought to push out of my brain. People told me that my heroine had been wrong, so wrong, that she knew nothing, that nobody else thought that at all (my heroine told me that people would say that because nobody wanted to upset me). I knew it was all wrong. Logic told me that. But my self hatred was so much louder. And it wasn’t alone any more. In a family that I have never felt I fitted in, I found an individual who made me feel more unworthy of involvement in that family than I ever have before, and the whole time they kept saying it was because they cared. They had, until that point, been my heroine. They had also been a little odd with me for a while.

I was more hurt that anybody could even imagine the things that person said, let alone someone who I had, at one point, trusted. Someone I admired. But anyway, my self-hatred had an ally. And it felt like a lead weight. Days passed and I had no idea when or how time had gone by. I cried. I slept. I sat and tried to function. And I repeated that process over and over. I could not. I just could not.

My mum tried to shout some sense into me, telling me I was going to fail my exams if I didn’t do something, telling me that I couldn’t just do nothing. I looked at my dog, my furry rock, and I felt nothing. I looked at my everything and I felt nothing. At that point I sort of melted.

After 10 days of hollow heaviness, I went to stay with Auntie Godmother and family. Instantly, I relaxed. Nobody talked about the crime (although Auntie Godmother was MY ROCK via text message through the weeks beforehand). Nobody talked about what my idol had said (a constant topic of conversation in my parents’ household). I slept. I ate almost an entire meal. I made lecture notes. I came back. My dog was my everything again. Revision began to occur.

Among the chaos I also broke my foot the afternoon before the conversation happened. After what was said to me, I had to be forced to get it x-rayed, because on top of my terror of hospitals, I also didn’t want anyone to think I was “milking it”. The x-rays showed that there was a piece of broken off bone just casually floating around my foot. The physiotherapist who reviewed the x-rays said the black line through my bone was a blood vessel, and that I should come back if my floating bone caused a problem. Today, with the assistance of 31kg of Labrador and a misplaced paw, that piece of bone forced its way out of my foot. A consultant looked at the x-rays and today over the phone said I should go back. So that’s fun. I’ll do that at some point… After the heart stuff. Because I can only deal with one thing at a time.

I’m missing London like someone has ripped out my beating heart (ironically my heart surgery will take place in the heart of the city I love). I miss my uni friends (haven’t heard from most of them, but that’ll be exam stress and my absence both… doing their thing). Seriously though I have never missed a place so much. It’s home. I miss wandering around it every afternoon, or late at night. I miss everything about it. I miss that skyline out of my window. I miss the buzz. I miss the miserable people on the underground. I miss laying in Hyde Park and wandering along the Thames. And I won’t get to live there, because while I was physically and mentally fighting to stay alive, I was out of sight, and my friends have arranged to move in together. And I cannot live alone (not safe, also now terrifying).

I’ve spent the last few days looking forward to Wednesday 19th of April for a very different reason than I did the previous surgery date (oh yeah, they also cancelled the surgery to remove Cedric – growth that bleeds a lot and needs OUT – because I’m too high risk to have an anaesthetic until my heart is… less of a poop. That was meant to happen last week). There is a 50% chance that, if everything goes right, this procedure will change my life. There’s also a chance it will damage my heart and leave it needing a little assistance. Before, I was planning long runs and dreaming of being able to walk from room to room without getting breathless, or without coughing pink froth whenever I lay flat, or without not being able to wear ANY of my clothes because my abdomen is so swollen with fluid… But for the past week or so… The thought of that cardiologist slipping… Has been my only comfort. Because I can’t do this anymore.

My conscious mind may forget to be scared that I won’t wake up, to juggle the stress of trying not to die (which, FYI, is a battle I frequently almost lose); on the surface I might not be thinking about how my health is so volatile it could take my life in a very short period of time whenever it feels like it, all day, every day. But the existential crisis goes on beneath the surface. It burns away silently. Along with the family stuff, and the uni work, and just the normal stresses of being 21, and knowing I will need somewhere to live, and feeling homesick but not knowing where home is, and only having £480 to live on until September because they cut my student lone since I moved to my parents’, and feeling like a burden, and watching my friends grow more and more distant, and LONGING to run again; also the insomnia and the PTSD about HOSPITALS from when I was younger, and the nightmares, and the wasted days and months that I lose to my health and hate myself for letting it steal… And it isn’t a lot, and unless you live with something that could kill you any time it likes, any day it feels like, or you’ve lived every moment of my life from my viewpoint, then you won’t entirely understand (but can potentially/at best relate to elements of it – because I never disclose enough information for full understanding of the… non-health stuff, which ironically is actually the hardest for me to deal with). But it all rumbles away in the background and it’s just… Broken me. How pathetic is that? How pathetic am I?

I guess I’m writing because part of me hopes this really is one of the last opportunities I will ever get to write again. I feel this great need for the people I know to be saved from me. And I don’t have the guts to do something about my existence myself. My body survived so many times when it shouldn’t have (I mean, I was in acidosis a couple of nights ago giving myself IVs and actually thinking that was it), but my mind… My mind is missing in action. Along with me.

If this surgery gives me back my life… If I go to sleep and 7 hours later (or more) Skippy has been persuaded to co-operate… I have no idea what to do. I won’t even let myself think there this time, because when that hope was taken away before I had been relying on it so heavily that I crumbled.

I’ll take either outcome, is what I’m saying.

A new beginning or an end.

I’m not fussy any more.

And whether Wednesday is the end or not… There’s no way but through how I feel right now, through states like this. There’s always another side. And if the other side sucks, ride with it, because there’s no way but through that too. We don’t have to find our own way. We never even see it coming. Just one day, we’re suddenly stood on the other side looking back. Reeling. Wounded. Facing whatever comes next. Good stuff, bad stuff, it all falls away because there is never any way but onwards, somehow. Unless you hold on. And right now… I can’t let go. I can’t let go of the hurt. I cannot find a way. But a silenced part of me knows… there will be one, even if I can’t even imagine it.

I don’t even have the energy to filter what I do or don’t spill out into this post. So I’ll probably at some point regret writing it as much as you regret reading this far. But thank  you all. For the support I receive here. For the comments that re-connect me to humanity a little bit, and the awesomeness of the blogging community – the nicest collection of people I’ve never met.

The Places I’ve Been (Part 2) a.k.a “More Word Turd”

In yesterday’s post, I confessed that I had no more to offer than some highly emotional word turd taken from the notes section of my phone. I am afraid today is no different, and the next few posts won’t be either. Unfortunately I have been struggling a lot with my physical health as well as my mood, and so, so much was left unsaid. Unless I capture the raw thought, there is no point in even attempting to find words because out of the moment I cannot find the right ones. For example, among all this, my next door neighbour was a constant. She was like an extra mother, a life coach, and we have been walking the dogs together whenever we can and if not, just hanging out. Among all this, personal stuff happened. In fact, a lot of extra stuff happened. I got a lot worse than these words show – so bad that I saw no point in anything, least of all trying to capture the thoughts so I could make sense of them for myself later.

So here it is. Another word turd. I was terrified to post yesterday, for reasons I sort of possibly explained, but the comments I got in reaction to that post weren’t what I expected at all, and I sincerely thank the people who left them, because they gave me the oomph I needed to post this today.

12/01

“On urgent list for surgery, sending his secretary over to scheduling to see when they can fit me in.”

It snowed for the first time in a long time, and settled here in Kent, but not really in London. Everything looked beautiful. My mum left me to sleep through dinner.

“Mum so helpful and friendly when I’m normal person ill. She can relate to that, sympathise with it.”

“Almost refreshing to be unwell with something that doesn’t have the power to kill me. But me getting normal people unwell is usually disastrous, because it makes all my health hiccups hiccup, putting me into the sort of state that does have the power to kill me. Every time I get an infection I end up in hospital, usually ICU, because I almost died again.”

“Mum insists on doing everything for me. She went out and bought a whole bag of extravagant foods and stuff that I used to really like, in order to tempt me to eat something. Won’t let me get anything for myself, left me to sleep through dinner. Told me to sleep, got me loads of stuff, waiting on me hand and foot… and this (“illness”) is genuinely nothing at all.” I felt grim but I wasn’t dying.

“That moment when you’re meant to do three separate graphs for your coursework and you’ve done it all on one graph with three labelled lines, and its the first bit of work you’ve done while having a breakdown and now you know you can’t even follow an instruction right (this was followed by a series of upside down smiley faces and then a crying face, because I had given in the coursework days early)

I am a failure

I’m doing uni but not well

[My next door neighbour] has been praising me all week saying she’s so impressed (she took me to and from the train station a lot and walked the dogs with me most days)

Today Mum said I did well as she didn’t think I would do it and get through the week and my heart isn’t there and stuff so apparently just submitting anything is enough.” Only it isn’t.

13/01

“So I got this message saying I had an appointment at [specialist hospital in London that deals with hearts including mine]. Thought oh good I’ll get to discuss the surgery with [Dr (let’s go with cardiologist because I’ve forgotten what I refer to him as usually)]. Then get a letter saying the 20th is my pre-operative assessment. Then below it had an admission date for surgery in the brand new building that looks like a hotel. At 7am… On the 31st of January. Couldn’t have been better timed; have a lab due the Friday before and then nothing assessed until the Friday after. Caught me off-guard though. I knew they were rushing everything forward but this letter was sent days before they could arrange any of that. Haven’t even seen him. Don’t even know what they are doing or why or if I will have a general anaesthetic or anything. I fear the unknown because I can’t prepare for it, so I got stressed I …”

“Haven’t done anything today. Woke up at 7. Came downstairs and started typing some lecture notes, fell asleep.” Basically my throat was agony and tasted of blood, and what started as a tickle had turned into a pain that spread right down into my chest. The pain made my heart go NUTS. “Heart very fast, chest pain from heart but this morning couldn’t breathe because it felt like something sat on my chest. Hurt too much to cough. Slept all morning dosed up on opiates. Watched Elementary while [my dog] laid on top of me and snuggled under my chin (he’s a 31kg labrador) which made breathing even harder. I can’t eat, I’m knackered, and all I’ve done is sleep and I ache everywhere… and that’s refreshing because that can’t kill me. It feels nowhere near as awful as my usual version of unwell. But it triggers events that will put me there. So I’m just letting my body do what it wants to: shut down and sleep and sleep and ache and sleep. Freezing one minute and melting the next. Dizzy if I even attempt to sit up. Heart way too fast. It’s annoyed. Deep joy.”

14/01

“You look the same”

“I’m not” – Taboo, BBC

“I’m terrified I might die on an operating table and yet my desperation hopes that will happen. A natural response to my fear of dying seems to be to long for death.

Now have a chest infection. It hurts.”

I think this was the day that along with the usual pink froth (caused by my heart letting fluid back up in my lungs) I started coughing fresh blood.

15/01

I compiled a list of evidence as it occurred to prove that someone in this household has an aggression/anger problem that I refuse to delude myself into thinking doesn’t exist like everyone else does. Happiness is not pretending you’re happy. Ok isn’t just pretending everything is ok. There’s a clear issue we’ve addressed so many times and suddenly we’re all acting like no, things are perfect. Pfffft.

The roads we walk have demons beneath and yours have been waiting a very long time” – Benedict Cumberbatch, Sherlock, BBC

This isn’t torture this is vivisection” – Sherlock, BBC  (There was also a part in this episode – the final one of this series – where they used the word soldiers in some awesome way that it would take me forever to quote).

16/01

“Today I really can’t breathe. Was feeling better yesterday but I woke up today feeling rough. Went to uni, mum drove me there, gave in my coursework. Went to lecture. Seeing people was really not good for me I just couldn’t cope with it. Lecturer didn’t show up so went home. Slept from 2pm until dinner. [My dog] curled up on me. Coughing a lot more today. No energy to do anything. Dizzy. Worried they might cancel my surgery.

Mum and I stopped on way to uni, she bought me McDonalds. We laughed as she ate FIRE (or as the menu called it, a piri piri chicken wrap). It was nice.”

17/01

“Was kept up all night by shooting electric shock pains all over my body, mostly left side, legs, left shoulder. Kept having witches and spasms. Happens sometimes, but my body really went for it last night.”

“Got my copy of Carve The Mark by Veronica Roth

“Things I suddenly cannot deal with

  • Self pity
  • Humans
  • Uni”

“I do not have the energy or the substance to throw myself onto the flames of someone else’s self pit. I am irritated that they have once again found their way to my doorstep, because their owner has no intention of fighting fire with fire – they hare happy to walk up to the raging inferno/ burning building of myself and ask me to use what limited stuff is left in my fire extinguisher to put out their tiny little puff of cigarette smoke. And then they drive themselves home in a fully functioning fire engine and leave me. That’s how I feel. Like everyone drives up to me in free engines, smiles in my face as I burn, asks me to put out their own teeny tiny trivial first world problem fires, and then drive off in their fire engines to answer the calls of tinier fires in the homes of people they’ve never even met.”

At this stage my friends were freaking out over the absence of a lecturer they all moan about constantly and trying to arrange a leaving party for him or bake him a cake and hoping he was alright and asking if it was weird to offer him any support they could offer. These are my friends. Who didn’t notice I’d moved out of London and also hadn’t been in lectures for an entire week. This told me a lot about myself, when it meant nothing at all. The irony was brilliant. A couple of my friends were annoyed about it on my behalf, which then made me pull this meaning from it all. I wish it had never been planted in my mind. I wish they’d left it alone.

“Nobody noticed my absence. Nobody would miss me if I left. Right now. And I don’t know where it came from because I thought it was leaving. I had my dog and I did revision notes. No work, but revision notes. I always think I’m not clever enough to be at uni. I don’t feel it. I feel like all the work is a mountain and I’m so far behind and so scared that the uni’s solution will be for me to drop out until my health improves (so forever then, because it won’t) that I won’t tell them. Little things, like people being dramatic about trivial little issues are too much, and I don’t want to go back. I was crushed by this emotion and I spent the last hour trying not to cry. Everything I try to do spirals into this big mess of thought and failure. My parents are really pushing me to go to uni tomorrow and I’m nowhere near well enough to do the commute.” Then I wrote about some uni crap,

“I’m angry.

I’m angry at the world all of a sudden.”

“I’m so disorganised I don’t know anything people ask me if I have a lab and I used to know these things and now my friends are just telling me when I have then except now only one person because nobody cares I can’t do it oh no help I’m going to fail.”

19/01

“Already knew my heart surgery is on the 31st. Got a phone call from surgeon’s secretary about removing growth and underlying cartilage. Says 8th of February. I have a PBL (problem based learning tutorial) session at the medical school then so had to cancel that date. I said that was too close to my other surgery because I didn’t want a lecture about putting my health before uni. She was all the 8th of March? The day before my 21st birthday. I was going to relent and go for it, and I said yes, but then my mum was all it’s the day before your birthday you don’t want to ruin that (been there, done that, got the t-shirt and the opiates and the birthday spent in a world of pain). I asked if there were any other times he would do it and she said no I couldn’t wait any longer than that so we went round and round in circles until she was all after that the earliest it could be done wouldn’t be until as far as the 22nd. That would be two months between first showing anyone the growth, and having the thing removed. The NHS waiting list after they decide you need the surgery (not from the initial consultation) is meant to be 18 weeks. Erm. What. Cedric, what are you?” (yes, I named the tumour Cedric. It helps me tell myself he’s harmless because Cedric sounds like a harmless sort of name – please do not now send me a list of serial killers called Cedric to prove how illogical/ incorrect I am).

I just got completely overwhelmed because I worried about leaving Cedric so long and I was still thinking about the other surgery

“Me: I don’t care I don’t want to do anything any more,

Mum: You think I do either?! *walks out of room in frustration*

I am a dick.”

“I am so done. With all of it.

I’ve thrown myself into uni work but there’s no passion in it. I tried to write a blog post and almost cried in the end because my words are so wrong and people think they understand but they don’t. Even people who’ve been through every single event of my life wouldn’t understand, because they would understand and experience it from a different viewpoint.

What I want/need to do is quit uni. But all my parents care about is me going to uni, never mind how bad it is for any form of my health. I want to focus on my writing.

I want to move to Canada

Looking at my dog and working today with him sleeping in my lap and across my legs as I typed notes, I wondered how I ever managed to be apart from him.

Only one person has messaged me since Monday. Good to know where I stand.”

“I don’t want this surgery any more. Any of it. He [cardiologist] has made such a mess about it and put so much extra stress around it with the not knowing ANYTHING ABOUT WHAT OR WHY THEY ARE DOING TO MY BODY… I like to have a plan and know what’s going to happen and what they want to do and why and if there are other options. I like to feel in control and like it is a choice and he took that away. All of it. He doesn’t even know and he didn’t even mean to but he has.”

“Nobody has even asked me if I want to go ahead with the heart surgery. I haven’t given consent. I feel like I don’t a have a choice. It’s majorly triggering my PTSD (which was triggered by horrific experiences in paediatric wards when I was younger).”

“He had to make a five minute phone call. Just when you think you actually matter to one of them, they remind you that you’re just a hospital number in their appointment list. No thought about how the person might feel or what a big deal it is to them; I know he’s thinking about my life but is he thinking about it for me or him? Sometimes I wonder. I let my guard down. I guess I’m more annoyed at myself actually.” Basically he was the one doctor who seemed to care about me as a human. He always remembered and discussed uni and everything, and he seemed like he might be a good guy. And he was just like the others as soon as he did that, because my PTSD made me relive things and the fresh fear convinced me he was just like them, that I was going to feel every snip of a surgery or be screamed at or assaulted or… Stuff.

“Why do doctors even have so much power? They’re human, they’re flawed, and yet even when they are students they think they are above everyone. Self importance ruins people.”

“I seem to be unable to do anything other than uni. Which would be great… Except I have mostly done last semester’s work, rewriting notes from lectures I actually attended last semester (so… Hardly any) or even staying up to date or attending this semester’s lectures. I’ve started revising, but right after I’ve written up the notes. It started because I was so in love with immunology that I didn’t want to work on anything else.

And y’know… I’m only focussing on the modules I like. Which means they are the modules I could do in my sleep because they interest me so I remember: Immunology (I’ve only been to two lectures), molecular bio (only four lectures of that) and physiology because that’s cardiac and respiratory and THAT IS MY JAM. I am a cardiac nerd.”

 

Aaaand flush.

The Places I’ve Been (Part 1) a.k.a. “word turd”

I haven’t posted for a while (my apologies for stating the obvious). There are multiple reasons for this. I’ve been through a lot. Mostly inside of my head (which is something I’m only just learning to partially discuss through the fog of my own shame about it), but also, I became unwell in the way that healthy people become unwell, which was refreshing but also… Upsetting for other health hiccups. I have given up on social media, because it wasn’t a helpful place for me and I realised I existed perfectly fine without it, so I haven’t viewed my social media profile (yes, I only have the one and I’m a 20 year old, shock horror) in over a week. I also began to question the blogging environment, as going through a difficult time this was not only something I couldn’t cope with, but something I realised was not helpful at me at all – in fact, lately, it had been un-helping.

I tried to post, and I couldn’t. I couldn’t find the words, just like I can’t now (I have visions of having 0 followers at the end of this post I’m that certain this is going to be word turd… I may have to rename this blog word turd. It’d be more accurate and it amuses me). They were wrong, they didn’t sound like me. I got frustrated at myself and I almost cried (note: I don’t do that easily) and then I started to almost panic about my lack of ability to communicate, knowing people would take everything to be exactly as I made it sound. All of my posts had been like that, and a lot of people were telling me they understood, and providing examples of their own life. In reality those people can relate to one area of my life, but I do not share all on here, and even an individual who knows me well was making assumptions based upon words that I felt just couldn’t hit the nail on the head, and didn’t show the rest of the iceberg beneath. That made me feel alien. It made me feel like I would never be understood, and it was entirely my own fault. Those words don’t take into account the rest of the stuff I’m trying to deal with. I felt pressure to get those words right, because that seemed fair.

So after a few days of freaking out if I even thought about writing anything, I tried to post again, and read a few posts from bloggers who followed this blog. And I found chunks of my blog posts lifted and used with no mention of my blog. I found the format of a couple of my blog posts used by other people, and hey, I don’t have claim to a style of writing (and that isn’t what bugged me, sharing is cool, it was the lack of a “this idea/ exact paragraph originated here” that somehow did, in that moment), but I have been feeling very used in many areas of my life (because I have been) and it was salt in a raw wound. I kind of felt… Violated, in a weird way. And worthless. So that was it. I couldn’t. I was in a very, very bad place staring through a mist that made everything else seem equally bad, and I gave up on blogging. I decided my words didn’t matter (because events that I can’t mention on here made me feel like every thought and memory I have ever had was wrong, and I didn’t understand why we had to pretend everything was fine).

So here is a format of post that I like. I like it because it’s raw. It’s as I felt it. Here is the notes section of my phone, from the 8th-11th of January. For the indefinite future, my posts will probably be solidly based around these. I can’t think any more than that,  and these words aren’t me trying to explain thoughts – they are just pure, raw thought. As it happened. Mostly while I was sitting on a train or curled up under a blanket and my chocolate Labrador. I wrote it down to try and capture it for myself, to try and process it. There’s a lot I chose not to share, because right now, here doesn’t feel like a safe place for me to share. I’m suddenly super conscious that people can read this, and take my words and post them as their own. And in doing that, they take pieces of who I am and masquerade them as their own. It took me a long time to write anything here, to want or be able to share anything here. It still feels unpleasant. It feels inherently wrong. But then again, so do I, right now.

Warning: This post is very, very long (because I apparently had a lot of thoughts on the 8th – 11th of this month) and these words are like grains of salt – if you have any raw wounds in your mind, they are very likely to find them and burn like hell (my way of saying, trigger warning, because I’m bored of those two words).

8/01

“Dad: If you were a bit nicer I might say I’d give you a lift but you make me not want to

Mum: Why don’t you ask for help, why don’t you ask people for stuff?

Me: because I don’t want to inconvenience anybody

Dad: Yes you do, you inconvenience people all the time. You’re inconveniencing us now

And I instantly just covered my face and broke down in tears and apologised and said I don’t mean to, and he said I was being silly and told me not to leave the room and I couldn’t even, I was just destroying myself. When you feel like the world would better off without you and you ate a giant inconvenience. That tops it. (I’m not putting what I wrote next).”

“Mum: are you awake?

Me: *groans*

Mum: Come on, wake up, you have to do your jab (injection). Don’t go back to sleep! Sit up! Look at the state of this room. It doesn’t need to be like this.

Me: *says some useless inadequate string of words that nowhere near explains that I hate living in this mess and don’t want it to be a mess, but look at it and don’t see any way to fix it and no solution and melt down so just add to the mess too because I am a mess too and nothing matters*

Mum: I know you don’t care about anything but how could you let it get like this after al that time we… I can’t! I can’t even talk about it! Do whatever you need to do (as she walks off)

What those words and her disproportionate upset over a room said to her brain: The state of your room matters more to me than you. I think you’re being pathetic. I think you deliberately let your room become a mess. I’m taking it personally. I care more about the time I spent in here with you than I do about you. this matters more to me than your mental state, which I am willing to make worse to aid my own, because you don’t think about me. You hate me, I can’t stand to talk to you any more. I can’t stand to look at you. I give up caring about this room. Go it alone. You hurt me. Always. He was right, you ARE an inconvenience. I can’t cope with YOU.

What happens in my imagination: I cut deep and grit my teeth through the pain and dip my fingers in the blood and write it in tiny letters on my wall: I’m sorry. Because maybe she’ll understand how much I mean if it is written in my dying blood. And then I die. I take an entire row of tablets and then I die. I die a thousand deaths in every way I can think of, and I give up.

I can’t do this to them. I can’t stay here.”

“Go on social media and see these INCREDIBLE drawings like… wow. Someone on our course has done them and started their own company printing them on t-shirts and postcards, and that’s something I tried and failed to do and I now realise that was stupid because my drawings are nowhere near as exquisite and I realise how stupid and naïve I was to try. And suddenly art isn’t my thing any more. Just make it stop. I want to go. I am inadequate in every way.” See how it twists things?

“I took a permanent marker and I wrote their words on my thigh. They hurt me so much emotionally it seemed illogical that they leave no actual mark on me. I learned from them. I did not want to forget what scum I am because I don’t deserve that, so I wrote their words on my legs. Word for word. And they will say I twisted the meaning, they will say they didn’t mean them (actually they won’t say any more) they will get angry that I clung to those letters that flew from their mouths and they will say I took it out of context:

Do you have any idea what you’re PRESENCE here is doing?

You inconvenience people all the time, you’re inconveniencing us now

My mood in the last week has done this   \    because of you

Having you around makes our family difficult

You’re taking the rest of us down with you

I am vile. I don’t deserve to forget that hurt. I am poison. And now every time I look down I will be reminded, I will carry those words beneath my clothes.

I had visions of a mortuary worker giving me a final wash and finding written on the other thigh I care about you all so much. You are finally free of me. I can only apologise it took so long.

They say they don’t want me to [end it all] and then they say words like those with such hurt in their voices that I know what I must do. And I sobbed then. Because I don’t want to do it. I don’t want to die. ButI care enough to do anything for my family. Enough to kill myself to set them free. Enough to put their need above my own life. I am sorry. Words cannot describe how sorry. And I can’t talk to them because it just turns to shouting.” Those words on my thigh were spoken by my parents.

“Me: Would you be happier if I left?

Bro: Some of the time but not all of the time

Me: Why?

Bro: Because I’d miss you.

Me: But you’d be happier if I wasn’t here?

Bro: No. Where would you go anyway?

Me: Doesn’t matter (I don’t want him to know I’m talking about ending my life) would  you be happier without me here?

Bro: No. Leaving wouldn’t make anybody happier.

Me: It would make everybody that isn’t you happier

Bro: How would it?

I tell him I inconvenience people all the time and having me here makes our family difficult, that I was asked if I had any idea what my presence here is doing.

Bro: Who said that? Dad?

Me: Mum

Bro: You don’t need to leave, where would you go?

Me: It doesn’t matter. Would you be happier? Do I need to go?

Bro: No.

And that is how my 14 year old brother just saved my life while making a salt and vinegar crisp sandwich at 11pm.

I’ve gone downstairs to watch TV because I don’t deserve to sleep. All my mum cares about is uni and my room, and I have to give her that. I have to give her that because I can’t give her a daughter that fills her with love and makes her happy by being there, or even one she wants to be around. I would kill myself for her. I almost did. This isn’t so different. I need to punish myself, I deserve to suffer. I will not sleep. […] I was going to start uni work but I can’t. I tried. I picked up the notebook. I can’t brain. I can’t focus. I was going to tidy my room but it overwhelms me, I don’t know how or where to start. But I have caused so much hurt, and I don’t want to cut myself or anything, but I will use exercise as a punishment – not running, not the kind that brings relief or upsets my heat, but the kind that hurts. Until failure. I will not stop until I cannot even even.”

09/01

I walked my dog with my next door neighbour and her puppy. And I talked to her little. And she got it. She told me all about her own experiences with feelings like mine. She told me it never leaves. But she understood. She helped me. She told me that being alone didn’t help. I spent that day in her house with her. She cleared a space in their office and I sat and started my coursework. I got almost all of it done. I was more productive in those two hours, with her constantly motivating me and pulling motivation from where I could find none. And she swore she would support me, and that I should do my work round there with her, because she loved having the company. The things she shared were too personal for me to share. The relief I felt could not be put into words. The things she did for me then, and since, are above and beyond. She has driven me to the train station and picked me up, walked with me a lot, messaged me while I’m at uni and at home to check up on me… She’s like another mum to me now.

That night I watched Sherlock. And Benedict Cumberbatch’s lines spoke to me. A lot.

“Death is something that happens to everyone else. Your life is not your own, leave it alone.”

“It’s the safest place to hide – plain sight”

“In saving my life she concurred a value on it. It is a currency I do not know how to spend” – Benedict Cumberbatch, Sherlock, BBC

The last one was particularly haunting and scarily accurate, given the amount of times doctors have saved my life in the last year alone. And I honestly cannot justify those acts, the fact that I took up an ICU bed that was needed, and someone probably died because the people who could save them were making sure I didn’t.

“Bro: *Pulls me into a hug* Where were you going to go (yesterday)?

Me: Heaven

Bro: Seriously? *doesn’t let go. Squeezes harder. Keeps hugging me. For ages*

Me: Yeah. And then you told me not to go so I didn’t.

No words necessary.”

It seems to me like you’ve gone off the rails. And we just need to get you going again. I will support you in whatever way I can and as much as I can – my next door neighbour as she drove me to the train station to go to uni.

For the whole of my first year I was determined to go to uni even when in no fit state to, and people were trying to drag me away from it but I shook them off and tore away and carried on with lumps of who I was still in their grasp: missing, failing, flailing, dying inside and outside for the sake of a degree.

Now those same people are pushing me, and that same mind is kicking and screaming and grabbing onto anything and… Terrified.

Going to uni I went past places I know so well. It calmed the panic. But I was freaking out like I was going to a hospital appointment at the thought of uni. My next door neighbour messaged me to coach me through it. Uni pal messaged me the whole way too. She was beyond amazing. Beyond.”

“London is no longer mine.

Mile end feels foreign to me. This busy world carries on around me and I feel disconnected from it. I feel outside of it.”

“Mum: *walks into my room when I’ve just got out of the shower* What’s that on your leg?

Me: What?

Mum: Words?

And then as my brain is all ASDFGHJKL you weren’t meant to see that that’s why I wrote it there, she was all

Mum: Is it for if you… do something? (meaning take my own life)

Me: *shakes head*

Mum: Is it in case something happens to you?

Me: *shakes head*

Mum: Is it medial information?

Me: *shakes head*

Mum: What is it”

“I was walking through this train station and I walked faster than I would ever normally walk. My muscles hurt and my heart grumbled and I didn’t care. I don’t care. I walked up the stairs in one go and I pushed myself to walk as fast as I could and decided pain wouldn’t stop me, nothing would stop me; not exhaustion, nothing. I am not listening to my body until I fall down.”

“Sat in the bag rack on the train home (FYI: NOT designed for comfort, or for humans to sit in) Dinner straight away. Heart hurts which forced me to sit. Falling asleep on way to uni then in lectures.”

11/01

The day I discovered, and fell in love with the subject of immunology and re-thought my entire life plan as a result.

“Some day I will go for a five mile run before this commute.”

“I want to hurt. I won’t induce the pain, but I welcome it. Because I deserve it. I want the constant reminder that I am alive and I can still feel because pain is unpleasant but pain is a feeling. I don’t enjoy it, but I ate myself so much that I am satisfied by its presence because I deserve it, it feels fair.

My heart hurst so often that I am almost concerned when I don’t have chest pain because I wonder (illogically) if my heart is about to stop or something. The chest pain recently is almost constant, it is induced by all levels of activity, accompanied by tachycardia and usually a bit of arrhythmia, which gives me cramp and lactic acid buildup in any muscle I’m using (usually legs) and the pain becomes quite overwhelming. That should stop me, but now I ignore it, push through it. It tells me I am defying. It tells me I am doing something the entire universe doesn’t want me to do. It is a rebellion against myself, against something that will not work with me. But… It isn’t even that. It’s a lack of concern for anything and everything, the same lack of concern that made me just step straight out into Mile End Road (a very busy main road) today and nearly get hit by a van. I walk everywhere as fast as I can because I just want to be on time for uni  or have this overwhelming desire to get out of London as fast as possible and I don’t listen to the thing that tells me no. I go at a pace far greater than I usually would, and it hurts, and sometimes my muscles are so underfeed they won’t really move but I won’t stop even then, not until the ground rushes to meet me. And I don’t care any more. I’m terrified of death recently and yet I’m pushing it. I’m being an idiot. And I know it’s stupid but I don’t CARE. And I want to care. I know I should. But I value myself so little that I can’t. I can’t. I am writing this while on a train, but I am off the rails. Some days I stop taking one medication or another, not consciously, but by accident. Today was my heart meds. Didn’t think there’s be a difference and then I got out of breath just walking to the train and coughed pink froth and realised it helps at least a little. I don’t even understand it. I want to try but trying is so difficult. SO difficult.

I’ve fallen in love with immunology. Like. IN LOVE. New favourite module of all time ever.”

“Got in and walked the dog. Came over dizzy while shopping with (brother). When I got in Mum said I looked pale and told me I’d overdone it. Went to eat dinner, came over SO dizzy. My stomach was HUGE. Could hardly walk (dizzy isn’t even right, nor is light headed. It wasn’t fun though). I was zig zagging all over the place. Mum told me off exclaiming that I was always ill. Wanted to shower as I was freezing, ended up just crawling into bed. Messaged [Uni Pal]. Slept. Couldn’t stay awake. Woke up and couldn’t breathe, it felt like soup instead of air. Coughed a lot. Really struggling to breathe now. Made it downstairs at 10pm to try and work because Mum wanted me to work. Heart thundering away at an alarming speed. Wheezing and stuff. Nearly not enough breath to talk. Last time I felt this bad I was in a Cardiac ICU.

I don’t think I can deal with being around so many people [three friends].

Was weird to be walking the dog two hours after being in London for a lecture. Nice. Sun setting over the valley spilled out before us. Let my (very arthritic) dog run attempt to run. He now growls at any dog that comes anywhere near me (overprotective much?!) he had so much energy and was so disobedient that I had to anchor myself to a tree to prevent him chasing a dog away.

At least I got a seat after 1 stop on the train home today.

Mum told me not to work and to just go to bad. I’ve been to lectures in far worse states than this.”

And that’s the completely all over the place nature of my thoughts. Some of it. There. Apologies for this sorry excuse for a post.

 

I Can’t Hide It Any More

I can tell you now that I probably won’t post for the next few days (to compensate for that, this one is very long). I won’t post because I’m struggling to post now, struggling to think and tolerate the combinations of words I keep typing and deleting and typing and deleting. I am self critical at the best of times. Right now, I hate everything about myself, and everything that occurs as a result of my actions. Right now, I’m almost in tears. But there is a panic. Not a pure panic, an emotive panic (only way I can think to describe it); my mind is backpedalling and scrabbling for something to hold onto and stamping on a brake pedal attached to wires that have been cut. Because I go back to university on Monday, and for weeks that has felt very, very far away. Until now. Until Monday the 9th of January is the day after tomorrow, and I have to start planning things, and even attempting to find out what time train to catch and thinking about the journey I have to make stresses me and makes my mind have an internalised panic attack until it shuts down and I smother some other thought over reality to stop it breaking me.

I can’t cope. With reality, with people, with functioning. I am trying so so hard to find it within myself to try as hard as I occasionally manage to, but I know things are going to fall as my sinking mind throws things overboard to try and keep itself afloat. I know this, because it’s what I’ve done for months now. And it’ll throw this blog overboard. And even when I try to post, I’ll end up sat for an hour getting frustrated at my inability to write what I want to say, what I want to project. Today I want to be upbeat and hide the way I feel, and I also want to let it out, and I can’t balance that in a big long string of words.

(T R I G G E R     W A R N I N G – I’m getting as sick of writing that as you will be of reading it, so I’m putting it in different ways now).

Today my mum and I left for London in the morning and packed up everything in my accommodation. I didn’t do anything. I sort of sat there and stress-ate my way through an entire packet of cracker-type biscuits. I looked out the window, because when I turned around and looked at the chaos everywhere, my brain couldn’t see a way through it or around it and it got so stressed I almost cried. Logic deserted me. Logic would have told me that we had a system and we were sorting things and it was all going to go into the car and it just needed to be organised better. I don’t know what the rest of me thought, because it just caved in around me and deserted me as well. Pathetic. Illogical. I don’t like not understanding myself, I don’t like not being able to think my way out of a thing. I don’t like being out of control… And I was. I am.

My mum forgot bin bags to put my bedding and stuff in, so I had to walk back to where she parked her car to try and find them. She’d parked down a small side-road next to the ambulance station which is behind my accommodation. Thankfully, there were no ambulances outside, because they tend to induce panic, given my history with hospitals and the fact that they are always at the end of an ambulance ride. I found the bin bags (not that you care, don’t know why I’m even writing this). I had popped into the shop on the way to buy a bunch of food to eat (my subconscious reaction to the failure of any other alternative coping mechanism that didn’t involve not existing. Maybe if the monster was fed, it would stop trying to consume my life? No. But anyway). I was carrying this bag of shopping that had everything in it, and I was breaking and hurting and desperate and giving up… And my heart wanted what my heart wanted. And my head couldn’t rationalise well enough to tell it no. And I’d passed so many joggers and it broke me EVERY time. So I ran.

Only ten metres (actually, only past the ambulance station). I accidentally picked the perfect place to be such an idiot (even though in that moment it didn’t feel stupid, and it still doesn’t even though I know it was) because on a quiet, empty road right beside a building full of paramedics (where no humans other than those paramedics would see you in the mortifying situation you may end up in) is the PERFECT place to take a risk on a flaky organ, right?

I ran. I just ran. I couldn’t not. Honestly, I could not stop myself. Sirens were screaming in my head like STOP YOU IDIOT STOP. But there was this smile that I couldn’t not smile, and this huge, overpowering voice just shouted back BUT FEEL THIS. FEEL THIS. RIGHT IN THIS MOMENT I DON’T FEEL LIKE THERE’S NO WAY. RIGHT IN THIS MOMENT I AM OK. FEEL HOW GOOD THAT FEELS. WE’RE RUNNING, MONSTER, AND YOU CAN’T CATCH US. And I went with that voice. And it felt like I ran for minutes and minutes. Just a short little burst of jogging, and my mind was a bearable place to be.

But my body was not.

This seismic event happened in my chest as my heart rebelled, apparently siding with my brief and apparently fickle logical thoughts. I stopped running when I hit the pavement again (yes, I ran in the middle of the road, on the wrong side of the road, and I couldn’t see if there were cars coming, and they wouldn’t have seen me until it was too late, and I realise this now but right then I didn’t care). I walked, but there was this smile on my face and this spring in my step and this BUZZ running through me. My chest hurt. It HURT like it hasn’t for a long time, and the tremors of my cardiac earthquake returned to my no-longer-home with me, but my goodness I felt free. For the next few hours my heart hated me. It shouted at me and I ignored it. The inability to cope took over, sitting there while my room was sorted was exhausting, because at the moment even passive things like trying to watch TV are too much for my mind. And I kept just feeling trapped, not in the room, but in myself. I wanted to tear myself apart and let myself out. I wanted to put my hands on my head and tear away the hair and scalp and bone and whichever parts of my brain were being so illogical and unhelpful and destructive, and I wanted to release the suffocating, withering remains of myself. And I couldn’t. I withdrew. I curled up. I stared out of the window, but joggers kept running along the canal and through the park and every step they took was like a dagger in my mind and I just didn’t know how to… Be.

Driving to London this time wasn’t as stressful as usual. Leaving was nowhere near as much of a lifeline. I didn’t realise how tense and stressed I’d get at certain landmarks along the journey back to university until I drove right up to campus knowing I didn’t have to go there and was suddenly free from it. I half expected the ground to open up and swallow the car as we drove away, knowing I would never step foot in that area of that building again, that I’d just ended a part of my life… But it didn’t. I couldn’t care enough about anything to feel about it. I felt heavy. We went back to my parents house. My dad had driven up to collect a car load of stuff and it was piled high in the hallway when we walked in.

And then my little brother and nephew got home. They’d been out and bought lots of packets of sweets just to get the free temporary tattoos inside. Now, I’ve wanted an actual tattoo for a while. I have multiple scars inflicted by surgeons and scalpels, but only one that fills me with the kind of shame you’re not meant to have about your scars. It’s a vertical scar from my wrist up my forearm for about 3.5cm. Most of my scars represent moving on, healing, strength. But this one was the result of medical negligence, and I have flashbacks to feeling every snip during the surgery that made it when they messed up y’know… The whole, not feeling two men cutting about inside of you thing. The surgery was to fix a mistake. It was an emergency at the end of me going for six hours of tests and ending up ventilated in intensive care instead. And it’s right over my radial artery, and when 16 year old me remembered that, it became a “if you ever want to die, just cut along the dotted line”. It’s super sensitive and dead to all feeling in different parts, but it hurts just to look at sometimes. Because during the events that left me with PTSD, I slept with my teeth to that scar, wanting to bite down and end it all but too afraid to sin. So I hoped in my sleep I might sneeze or bite down. And that’s what that scar was, my way out. My saviour. My only saviour. But people always notice. They immediately assume it is a self harm scar and so they judge. Doctors, university colleagues, strangers who don’t even know me. I wear a lot of wristbands on that arm to try and cover it, but they move, and people see it, and I see it. And then my nephew gave me a temporary tattoo of the wonderwoman logo that is about 5-6cm long. I was going to put it where the cannula goes in at my infusion site, or over my heart or on my chest – somewhere only I knew where it was. But then I saw the scar. And for so long I’ve wanted a tattoo of an ECG trace to cover that scar, or an anatomically correct heart (I am undecided, hence no tattoo… Also, because of my health hiccups, I can’t get actual tattoos, but hey, I’d do anything right now).

I put a wet sponge over the paper and waited for the image to transfer, and when I pulled it away, I laughed. And then I shouted YOU CAN’T EVEN SEE IT! OH MY GOODNESS YOU CAN’T EVEN SEE IT, IT’S GONE! LOOK! I was so excited. The scar is a good few millimetres thick, and it looks like it’s raised. It’s a different colour from my skin and it’s so obvious I didn’t think anything would hide it, but it was hidden under the longest part of the image, just poking out a little between the inverted peaks of the “W” but only I would ever notice its subtle presence there. And it was gone, just like that. Gone. To such a simple solution. It looks almost like a real tattoo. So my nephew gave me three more wonderwoman tattoos, and my little brother said he’d give me any more that he got (the designs are varied between each packet of sweets – today they bought about 20 packs each so…) And I went and bought myself three packets of candy sticks that I didn’t even want, just to try and get more things to cover that scar. The boys came with me, my little brother and I walked along together talking, and he carried my super heavy bag of shopping, while my nephew literally ran and jumped all over the place a few metres in front of us. (My little brother put a batman tattoo on his nipple – keep in mind what happens to this area of a human being when they get cold – in a rather unfortunate position which means that batman’s trousers look rather… Full. Especially when my brother is cold. He is currently wearing five temporary tattoos, but this is the only one I cried with laughter over. I am a child).

I went online and bought some better temporary tattoos – they even had them in ECG traces, so I got some of those, and some other cool designs, and a new rucksack to keep my laptop protected on my SUPER LONG commute to uni. Which I then had to start thinking about, because I have to do it on Monday. And then everything was real. And I realised how much I don’t want to go back to uni. And the dread set in. Heavy, crushing, dread. And then panic. And stress. And so many feelings my head is like a pressure cooker and I could not words. I am beyond not ok. But leaving uni or even taking a break isn’t an option. My parents made that clear. They go on about how much money I will have wasted. And I worry that going back is going to push me into an s word that will waste so much more than money – it’ll waste all the time I could have had left on the planet, all those years. And I’m not strong enough to promise I won’t do that.

The commute is fine if I can get a lift to the train station 5 miles away – then it’s just a half hour ride to a train station, a short walk to the tube and 10 minutes later I’m at uni. But when there’s nobody around (i.e. on Monday) I have to walk for 5-10 minutes to get to the bus stop, and I can’t be late because the buses here run every 30-40 minutes. Then after 20 minutes on the bus, I have to walk to the train station. I haven’t lived here for a while, I can’t remember the way, not from that direction, not on foot. I’ve no idea how long the walk will take, but I estimate around 15 minutes. Then I get on the train. Then I get on it, then walk to the tube station, then have to battle with all the stairs to get to street level… And my heart is going to HATE that. The whole 2 hour commute (including the waiting around and stuff) is like heart hell.

I get chest pain just walking slowly around the house at the moment. Getting to the shops (which isn’t as far as the bus stop I need) left me breathless and puffy with fluid. If my other health hiccups join the party and almost succeed in killing me in the fashion that at least one of them is prone to doing once every week or two (which made it a near impossible effort for me to get to uni when it was a one minute walk that literally only required me to step out of the front door and cross the road to get to campus), I won’t make it there. So then I got annoyed at the person who handled the housing situation so poorly that I ended up with no option other than to live alone. And then I forgot that, because my mum asked Auntie Godmother if I could stay with them sometimes (I’ll also be staying with my grandparents a lot, she suggests). And I just felt awful. I didn’t want to be there. I didn’t want to bother them or make her say the things I’ve driven my mum to feel about me.

In the back of my mind I am aware that there are the three assignments I have due in on Friday, which would be ok if I even knew what they were or had been to more than 4 lectures since the start of November. I have no notes for either modules because I’ve been drowning in my mind for a long time and hiding it far too well (news flash – I can’t any more, I give up hiding I just can’t any more it’s too much energy that I no longer have, it’s all coming out in the wash and people are stunned and horrified).  I don’t even know how to deal with even thinking about work. And then exams will happen. And the world is a scary place right now in general and… (see where my mind goes with all of this. I’m a joke).

Then I thought about hospital appointments for NO APPARENT REASON. I have to rearrange the ones I was intimidated into just letting people book. Only for one health hiccup, because I could only deal with trying to see one team, but they made a load of appointments with different specialists in that area and I’m like NO THANKS. I have to rearrange them for days when I’m actually in London (all my health care has been based in London for a few years because I’m complicated and London hospitals are like… The top of their field in the country, most of the time), which is how things used to be. No more early morning appointments because I AM NOT getting a commuter train (standing for that long will overwhelm Skippy, and I will pass out in a heap of arrhythmia. No thank you. I’m struggling enough to even take all my medications at the moment. Some of them aren’t taken not because I don’t want to but because my brain just doesn’t seem to have the ability to think about that stuff at the minute, it’s too focussed on trying to find a reason to… Want to be alive.

And I hate that I have this attitude. It isn’t me. It isn’t who I am. Who I am is still in there shouting that I am so lucky and at least I’m not in a wheelchair now and I can walk, and at least there are buses and trains and ways to get there, and a two hour commute could always be longer. But something else throws a load of dread and stress on top of that. Every time I get it together enough to think more logically, I overthink and the stress sets in. I’m trapped inside of myself. And I hate the person I have become.

I just want to be with my dog. I am so sorry that I’m so pathetic, and so sorry that this post was so long. Thank you for reading this. Sorry. I’m trying so hard and yet failing so much more spectacularly. I don’t know why. It’s so pathetic. Nobody needs to tell me, I already know.

Hornets With Squatter’s Rights

This post is raw and… wrong. Wrong as in “incorrect” because words fail me in areas that only tears can adequately fill right now (I. Don’t. Usually. Cry.) and so this post doesn’t paint a replica of the picture I am looking at. It comes somewhere within a mile though, and it dances around a topic that may be triggering to some people.

My mum told me today that I am like a different person since yesterday. And I’m not. My head is still in a terrible, alarming place. Something inside of me is trying to choke the life out of me, and an even bigger something is telling me to choke the life out of myself. I hurt. Not in the way I’m used to – chest pain and other niggles are a part of everyday. But emotionally, I am going to collapse under the density of this darkness, going to explode with the pressure of this agony. I’m lighter, though. I’m so, so relieved. I didn’t realise how much I had been dreading going back to living alone in my studio until I knew I didn’t have to any more, and the release of that weight made me feel like I’m flying. Which is deceptive. Because my smiles are genuine, and it’s so, so much easier to act normal today (I actually managed to, and I haven’t had enough anything to do that for a few weeks now), and now that I’m not being so crushed it feels easier to try. But… that doesn’t make it better. I thought it would. I didn’t understand that you could be in such agony, and watch grains of the absence of that feeling slip through your hands. People think I’m physically well – people who don’t understand the impact hearts and kidneys can have upon a human’s ability to function. People who assume an invisible illness is a non-existent one. People who fell for the mask I have worn for so, so long over every singe flaw, every single struggle.

I had to break before I could admit to anyone that I was breaking. In front of them I ground to a halt and stopped functioning and socialising and caring and looking after so many aspects of myself, and I withdrew and… I hid it all so well nobody noticed. I pulled it all around me to keep everybody safe, and nobody saw, until I was so lost that nobody could pull me out, and even then they didn’t understand the gravity of the situation. Hello, I am being crushed. This is because some of the people I have surrounded myself with are selfish and ignorant beyond belief and use me as an emotional punchbag or for attention, because they know I will always be there. It’s because the majority of the people I’ve surrounded with just didn’t know, just could not comprehend and still can’t. And I don’t blame them for that. Even my own mother was ignorant (although not intentionally). She complains that I don’t talk but shuts down every discussion, particularly if feelings creep in.

I just wrote the entire rest of this post, and then deleted it, because it does not belong here. Oh ok so apparently tears are a great idea to my eyes right now. Excuse me for a while…

Edit: FYI the re-attempt at this next half says nothing I feel either. It paints the wrong picture. It sounds pathetic. And I’m sorry for it, but I wrote it, and I don’t want to make this post pointless. 

 

No look do you know what, I can’t even. I CANNOT EVEN HANDLE THE IRONY. I cannot even write the irony. Because I can’t handle the hurt it just drove through me.

I just feel let down.

I always make an effort to be there for my friends, to poke the hornets nests of their minds until they let out the swarm and I take the stings with them to save them from at least some of their pain. I have been used by people. Only a few people, but they used me. They let me take sting after sting, then they put me in a position where I had to take them, messaging me when they knew I was fighting for my life telling me they were going to end their existence and putting their life in my hands. They took everything I had and then left me in my emotional overdraft. Even when I tried to say I couldn’t be there, I couldn’t take any more stings because the hornets in my own nest were eating me alive… When I was so emotionally drained and broken beyond broken myself, these people took. They used. They were selfish and they never took any of my stings, never even offered to (not that I would have let them but the intention speaks louder than the action). They added hornets to my nest. They put their own hornets into my nest to relieve the pressure on themselves, and it made them feel better, and it killed me inside, and they didn’t care, because they didn’t hurt any more. They saw strength or whatever else they think I am. And before them I was stung near to death and they just. Kept. Sending their hornets my way. Even when I said, please don’t, I can’t any more (which was so, so hard for me to say, and rang alarm bells in the few people who genuinely know me).

Some people appreciated that and thanked me so much for being there for them, and left me to quietly handle the hornets alone but let me know that they were there. Some people poked my hornets nest but I grabbed onto whatever flew out, tore out the stingers, and let them deal with hornets that could no longer do harm but that got them in a panic nonetheless. Because people are afraid of anything stripy… But anyway. Some people ignored that. Some people went even further and ignored me because I no longer served any purpose in their lives.

And then I get a message telling me one of our lecturers left.

And the concern, the concern I’d voiced before and acknowledged but no longer had no room to feel. They wanted to bake him a cake and arrange a thing and make sure he was ok. The had these huge plans to be there for somebody they didn’t know. And I’ve picked so many stings from my mind that I took for that person because I wanted to, because I wanted to take them all, because that’s me, that’s who I am, that’s what I instinctively do for my friends, and I knew this person didn’t want to hurt anybody, and was stinging themselves with their own thoughts… And I tried to expose my own hornets now. And.

I didn’t know whether to laugh or cry at the irony, at the amount of concern and the action and the responsibility felt for someone a couple of times our age with his own huge support network around him who actually know about his out-of-uni life… These people that I know inside out, these people who came to me when they wanted to end their existence, who I spent so long telling how necessary and worthy they were until the hurt passed and a few words stuck… These people who I carried through hard times on a broken, fractured, bleeding mind that could not support itself and really needed their help, because it was dealing with bigger (but not bigger because everything is relative) things than they could ever imagine… These people that are meant to be my support network… They.

I was just lost for words, to be honest.

I still am.

And I’d started this evening to feel like maybe I could claw back something. My mum and I wrote all my uni hours onto the calendar, because she likes to organise things and stuff and decided to organise my life; and I was trying to force myself to imagine that there was some comfort in the idea that I only have to go to uni for a few hours at a time and then I can escape again in order to appease the thing trying to make me choke the life out of myself… And I bought a week-to-view diary and a weekly wall planner thing, and I filled it out. And then like that. Imagine I clicked my fingers there. Just like that somebody shut the door and trapped the hornets in. And I just lost it all. Just like that.

Blissful ignorance. Clueless bliss. Only, I was open, and if that person knew me, they would have known. Some people just…

Aren’t there. I’m a difficult person to be there for. I can’t even complain. I can’t even.

And the reaction and response told me things about myself that that person never meant to say.

It said I didn’t matter.

It said I mattered less.

It said my problems weren’t problems.

It said nobody understood me.

It said I didn’t matter like I thought I did.

It said nobody would ever kill the hornets or even smoke them to subdue them for a little while (I guess my dog is like smoke in that sense).

It said there was no concern.

It said nobody would miss me.

It said… Go.

And I want to join a gym. My mum suggested we start yoga or something, but I want to run again. I want to swim. And she said no, not until my heart is sorted. But she is out tomorrow, everybody is. And I want to run. For so long I have craved that runners high again. I miss it. It was part of my daily routine for years and it was the only thing that ever helped the hornets. The temperature is finally sub-zero (usual British winter is occurring for once) and I want to get so cold it hurts (like I did this morning when I walked my dog with my next door neighbour and their puppy). Like I said, the only thing that ever kept those hornets out of my head was sport. And that’s what I want. I want to run, even though chest pain is pretty constant now and arrhythmias happen a lot, and just walking through the woods this morning left me unable to breathe… My brain is desperate and lost and it will try ANYTHING to stop hurting, to stop hating itself, to feel less hate about its own existence.

So I’m going to run. Tomorrow morning. And even if I don’t, the thought of that run right now is the only thing… The only thing.

I’m willing to take a chance.

Right now, I just wish I wasn’t sat in the dark crying alone. But it isn’t just crying. It’s aching. It’s fighting with a part of me that I am out of control of that tells me my life is worthless and so I should just do what everybody wants and end it. It’s being at war with this constant weight of feeling like the only way to cope with the choking, relentless emotion is to seek the company of death himself. It’s trying to let out the parts of me I have hidden for so long and failing at doing that properly even here, let alone to people who I have helped let out those parts of themselves. It’s… I don’t even know what it is. I don’t know how to get through it, is all I know. But for some reason today I’m trying. I’m trying to plan and kidding myself that it might make things easier. I’m thinking of trying stupid, desperate things that aren’t as final as the stupid desperate thing that feels like the only way.

Nobody knows me at the moment.

Even I am beginning to find myself in the presence of a stranger, and that stranger seems to have squatter’s rights.

 

 

My hornets seem to be exploiting those squatter’s rights.

 

Over & Done With

I’m moving back in with my parents.

I didn’t expect to be writing that at the age of 20. Right about now I expected to be sharing a flat with a friend, building a life, coping in the way that I pretended to for months hoping it would become a reality. At some point I’ll feel like a failure for writing those words, for doing this – moving back into a house I was so desperate to get away from. In essence, I am reducing myself. I am regressing, I guess. And that’s not what I wanted to do with my life now, with myself. I wanted to feel human. Whole. But you have to understand this – I am not regressing. I am desperate. I am hopeless. I am empty. I am suicidal. I am broken. I am hurting. I am hollow. I am heavy inside in a way I cannot explain – so heavy I don’t even think the world can support me any more, and half expect to wake up having fallen to the centre of a great big black hole. And there is no desperation to maintain my existence, only a quiet crying that tells me that’s not what I really want. I want the freedom it represents. And that is stupid. It’s stupid because life is a gift that I have always been so, so grateful for. And I am so, so lucky. And I know that. But it doesn’t fix things. It doesn’t make the heaviness go away. And then you have to know this – me giving in to the concerns about money that seemed to override any thought for my mental wellbeing at times I totally can’t afford to leave university, because I can’t afford to live anywhere for another year. So I have to go back. But, we figured, I don’t have to live there.

I am no longer a Londoner.

London is no longer home.

London life, this thing I adjusted to and adapted to and was honoured to call my own, is no longer mine. No more night tubes and night buses and random 2am walks by the Thames. No more spontinaety. No more freedom to go anywhere whenever I want. No more London wanderings.

And that, at some point, will break my heart a little.

(Here we go again with the warning that this is about to deal with some pretty… Difficult feelings, that might ignite equally harmful feelings in some people. If your mind has fuel for such feelings/ my words to burn, please avoid exposing it to them. Also, if you do read this, don’t worry about me. Wanting and doing are two different things and an unknown part of me seems to be fighting the involuntary and uncontrollable want).

But I am doing this for me. For the very tiny part of me left crying out that stops me ending everything and injects hesitation into the emotionally driven urge to cease my existence (yes, how confusing. I ache to cease existing and then cry because I have that feeling and want to stay alive. I don’t understand it either, but it tells me part of me is… I don’t know, clinging on to something). I am doing whatever it takes to keep that person alive. I am too numb and drained to make decisions, and so in the end my mum made it for me. One phonecall, the truth about my health voiced, and I was free from the tenancy agreement in my student accommodation.

Kent is home again.

And all I could think was no. I can’t live in Kent because the nearest hospital to my parents’ house is the one where my life was ruined. And I cannot ever go there again (as I discovered the other month). This place holds so much stagnant pain. The years of bullying. I don’t want to go out in case I bump into doctors or nurses or teachers or ex-pupils that I know. It is full of people I wanted to be free from. It is full of memories I swore I would never let haunt me. But it has the paths I used to run every night. It has the woods I cycled through and climbed trees in. Instead of paying rent, the money will go towards my train fares and food costs. I won’t have to human, I can just focus on work and nothing else, and hug my dog when I melt down. That’s the theory, I think. My dad has no idea why I’m moving back. He seems kinda… Actually he’s pretty irritating about it. He sighs and rolls his eyes and is visibly annoyed. He sais in his (many) years of living he’s never met anyone else who feels the way I feel (as if depression is something that should be glaringly obvious to an insensitive oaf who never talks about emotion. Ever). He is cynical and sceptical and scathing, and he told me to just be happier, to stop being depressed. Sure, it works like that.

I want to pick myself up. I am trying, but I am filled with such heaviness that nothing seems to be able to get me out of this rut. Canyon. It feels like a canyon, and to everybody else looking in it’s a teeny tiny rut. I am terrified that whatever it is, I will hit the bottom of it and meet my end while they stand by with no idea I even need a safety net. Because I can say a few things here, but I’m closed off in reality. People can’t read me (unless they’re my uni parents, which always terrified me and then left me super… Relieved?). But anyway. I need to shake some of the weight, and the crippling loneliness and fear of dying that are so significantly intensified by living alone (which, let’s face it, destroyed my mind in a way I didn’t think a lack of companionship could)… That’s not a weight I needed to carry any more.

I will miss watching the sun rise and set over Canary Wharf as I lay in bed. I will miss waking up before the sun and running through Mile End park (which I have only done twice, but hey). I will miss living in Mile End, and the Central, District, and Hammersmith & City lines all being kite strings that tie me to the place I call home. All my medical care is based in London and has been even since I lived in Kent (the joys of being complicated, I guess). So that won’t change. But it means we go back to hospitals not communicating and… Do you know what I don’t even care about that. Everything is slipping. Everything is sliding. I stopped checking things I’m supposed to check. I ignored my heart symptoms and hoped that the decline would just cease to occur if I didn’t acknowledge it. It hasn’t. My days are a swirl of arrhythmia and chest pain and dizziness which inevitably leads to RIDICULOUS water retention, an inability to breathe, the coughing up of a strange pink froth, and an un-fightable sleep that steals my consciousness for hours. I had forgotten how big of an impact a small ball of muscle could have. I forgot how Skippy’s tantrums could make my entire body cease to function – the dizzy headache, the inability to focus my vision and then the inability to breathe… No thanks. Ignore, ignore, ignore… Only… None of my clothes fit. Overnight, it happened. Everything was loose, and by the next afternoon I couldn’t get any of my jeans on, and they had until that point been falling down instantly. I don’t even want to know how many kilograms of water my kidneys have let stay on board to punish the heart that has annoyed them. Who even knows if I can commute? I don’t. I don’t even want to. I have three deadlines on the 13th of January (apparently) and I don’t even know what they are. Should probably care. Can’t. Just can’t. And then even if the heaviness clears, I think about the old man dying beside me and nothing matters all over again in a whole new way.

I got this beanbag for Christmas (always wanted one). And my dog is super happy because when I snuggle into it (I don’t sit on anything else in this house any more) he climbs up onto my lap and snuggles up and we fall asleep like that. He laid across me tonight (2am, to my brain, is still tonight), and I thought about coming home to him every night and I just wrapped my arms around him and… Lit up. And I think it was only when my mum saw a genuine smile that she realised all those she had been seeing for weeks were feigned (my dad just shouted at me when I tried to explain my happiness was an act. He told me I’d smiled and laughed and that isn’t an act. He doesn’t know me. And I’ve mastered the art. Clearly). Anyway, she said I hadn’t been happy like that in a long, long time. And that’s kind of sad, because I wasn’t happy, but I was the closest I’ve been to that for… ages.

Other stuff that happened yesterday:

Went shopping to a huge outlet centre with my mum. We had lunch and just spent a day together and there was no shouting or snapping not even once which was awesome because it meant I was a tolerable human being for a change.

Whilst shopping, got a phone-call from my cardiologist’s secretary saying that I have been listed for a surgical procedure on my heart, possibly a second one too depending on how the first thing goes. No discussion about the pros and cons and unpleasantness. None of that; I was listed before my consultant even signed the letter to inform me that this was definitely the route we need to take. My mum kind of looked at me and said that meant I probably don’t have any other options. Heart surgery was one thing I wanted for new year. I’m grinding to a halt again, getting breathless and I am so, so tired of the chest pain because it seeps everywhere, spreads. And I mean… It can’t signal good things, can it? So it just almost constantly reminds me that Skippy is an idiot, and I don’t want to think about that right now, because I was busy concentrating on the other hiccup that keeps very nearly succeeding in its mission to kill me.

Got home to scan results. No inflammation, so Cedric (small tumour) is a solid thing. And given the history and the presentation and stuff, the surgeon wants Cedric OUT, along with the “underlying cartilage” he’s grown from/ attached himself to. In fact, no other options were given or discussed. I was more sort of… Told. Twice in one day. That I’m going to have a general anaesthetic. And it didn’t phase me. Because that’s just normal life. That happens. I’m used to it, cool as a cucumber about it, and it is pretty much as much of a big deal to me as my dog eating his dinner – it has to happen for life to be y’know, possible and present, but it isn’t a huge great thing. In fact, surgery is good news, because it is a route back to normality, or a method of never having to face that reality again if it goes horribly wrong. Either way, it means an end. In theory. And that’s all I want. A break. From everything. Just to… Breathe, again. Because I have been drowning for so, so long. (Surgery also means that there’s something people think they can do to help, which means HOPE, when I am capable of finding such a thing again).

So yeah, these are my 1am thoughts (even though it’s now 2am. Good one brain). I’m laid in bed with a great big bear of a Labrador sleeping on my legs, and the weight of him there is saving me from the weight within myself, sort of. And I am writing. Things that I am not posting here. My sadness has something to say. Also I’ve sort of accidentally written 9,000 words of a (not a novel because hello this is just me writing, but some sort of crappy story, but not a story because that word makes it sound silly to my brain, but yeah) thing, and I have no idea where it’s going, and it’s probably awful, and it’s not related to any situations or reality at all, but it seems to be my… Backup plan? Maybe I am trying to write my way out of this canyon. Then again, this blog does say Trying To Get A Life – writing my way out of a rut. So… That’s kinda what I normally do. Until now. Until it isn’t working. Until forget the heart and kidneys and physical health hiccups in general and my mind is the thing that poses the greatest threat to my life. I think. I don’t know. That’s my fear.

I’m me, but something else is at the wheel, and it wants to bail on this whole “life” thing. It’s so strong that I don’t know how long I can continue to overpower it. One of us is going to run out of the energy to fight soon, and I’m terrified that… It’ll be me.

But it won’t. My furry rock has… Secured me to the planet.

The Things I Tried Not To Think

Warning: This was not a typically merry Christmas, nor was it a Happy New Year, it was an entire machine gun full of trigger warnings, and it is the reason I haven’t posted for over a week. I fell apart. What you are about to read is what I wrote in the notes section of my phone on the occasions that I was with it enough to form words. It doesn’t show the hours I spent uncontrollably crying, or the hurt so bad I could almost feel it, or how close I came to something that starts with s and ends in a funeral, and tears that aren’t mine. It doesn’t talk about the real issues. It’s superficial. It’s the overflow. But for now, it’s all I can offer you. This is me.

25/12

“I came as close as I will ever come to asking for help

I said: I don’t know what to do with my life

She said: Just go wherever it takes you.

I said: I feel very lost and very unhappy.

She said: Obviously.”

That was it.

26/12

“They will let me go.”

27/12

“Do me a favour and tell them this… Tell them thank you. For everything, but mostly for enduring me. Tell them sorry that they had to meet me, to be burdened by me and probably by my health too. Tell them I’m sorry for ever existing. And thank them for putting up with all of that… (and I have never meant anything more).”

“[My emotion] switched back on and all I could do was feel. All I could feel was hurt. And all I could do was cry and buckle and deflate and write suicide notes and not find the right words or a sure enough way and then cry again and crumple more and race backwards through all the things I run from and just long for [the end]. All I wanted for Christmas this year was to [cease existing]. I died in so many ways, but not in a way anybody could see, not in a way that concerned anybody else.”

This was the day we had Christmas with my grandparents.

28/12

“Do you have any idea what your PRESENCE is doing?

Do you have any idea what having you here is doing?

My mood in the last week has done this (mimes falling off a cliff) because of you

Having you around makes our family… Difficult

You can’t stay here. That is not an option.”

She says all this to me, because I tried so hard not to cry in front of her, and told her I didn’t want to talk about why because she’s just shout. So she followed the suicidal heap of me upstairs, and shouted. Because we’d been to my grandparents and I sat and cried at the dinner table and she said it made an atmosphere. So I phoned my grandparents crying too hard to get words out properly, and I apologised for existing. And that’s what I do. When my mind is serious about going, I cut ties. I cut the emotional ties that bind me to the commitment of my existence. Slowly, systematically, it began with my confused grandparents.

“Talking didn’t help, but I cried so much that afterwards I couldn’t shed another single tear”

29/12

“University is the right thing for me but I honestly don’t know if this is the right time to be doing it.

I told her I thought she was going to let me go. She just stood there and hugged me for a very long time and asked how. I said I thought she was just going to leave me to kill myself. I thought she was going to leave me to go. She said sometimes just talking helps. It helps her. The words I said were interrupted and argued back against and I was told that my brain is wrong. That made me feel worse but it made her feel better. In her mind she was helping. In his mind I’m to blame (the whole next paragraph does not belong here. It’s too private. So… Imagine its contents before I continue). He said he was just reacting to me… So basically, kill me now. Kill every last cell of my being, please.”

This was the day we drove for three hours to my sister’s house and three hours back to spend Christmas with her and her family, and there were a lot of extra notes that I won’t write here.

30/12

“Run away from London and curl up in the countryside.”

“I am terrified to let myself get close to people. I panic, I freak, and yet all I want is to be close to someone, anyone. And I don’t know how to. Not my parents. Not [our extended family].

I started systematically apologising. I wanted to apologise for existing, but I couldn’t do that. I started with my grandparents. When I’m suicidal, like seriously having to make an effort not to end it all – I cut ties holding me to existence, the final strings.

I’m broken. I have caused so, so much hurt. And I never meant to, but they are right. The pain that pours out, it’s all my fault.

So I will apologise to them all. One by one.

[…] And I decided there I wanted to die again. Not again, because I never undecided, I just wanted it more again. Only I don’t. I do that to run from the hurt. I don’t want to be dead my mind just doesn’t want to hurt any more and so it runs to the only coping mechanism left that it can try – the only way it can think to never have to hurt again at all.”

31/12

“I am increasingly becoming obsessed with cleanliness and disinfecting

As I lose control over myself, I grab it everywhere I can

I have reason to fear germs. I’m prone to infection, and in a recent hospital admission they found I was leukopenic. But I’m more terrified of dying. So I melt down about the thought of getting an infection that won’t affect any of my family but will run riot in me.

Need to leave uni. Can’t cope. Asked that question directly ad realised the honest answer is no.

Dreading going back to London. Dreading it. Like, I collapse into this heavy pit of crushing dread. I feel heavy, numb, so heavy I’m drowning in life and time just wades into the mire I am flailing in and drags my drowning mind forward through the things that are killing it.

All day my heart had a party. It hurt. The head rushes were more intense and more regular than normal. I felt lousy. And this isn’t about that. Yes, some of this is caused by my physical health, but I am a normal person behind that and I have normal things going on.

I don’t know what to do with my life.

My dog thinks my bed is now his bed.”

“I am impossible to love, and almost as difficult to care about. I know. When people say they care I FREAK out and push them away. I know. I don’t talk about stuff.”

“I’d like to apologise. Just that. An apology. To everyone who knows me, because I’m sorry you have to go through that.”

31/12

“I don’t want to go back to uni. I don’t know how to go back to being alone. I don’t know how to go back to trying to be social and feeling lost and overlooked in one of the most densely populated parts of the country. I don’t know how to go back to the pressure that will eventually give rise to stress, and the lack of support. I don’t know how to go back to being without a dog, without something warm and alive to cling to in the aftermath of a flashback or a nightmare, without a safety net to wake me up before my body even lets me know it’s trying to die again. I don’t know how to go to a cold, modern, EMPTY studio where 14 square metres fits my kitchen, study area, bedroom and bathroom all into one space. I don’t want to be penned in. I’m not an animal built for a city zoo.”

(another piece too private and personal to belong here) “And it’s as if all the things we had to work to (…) It’s as if that never happened. This perfect being stands in place of all of that and it tells me “this is all on you” and they both omit, forget, overlook. They tell me it’s normal (…) And in that moment I know I will never forgive either of them. I feel betrayed. Mostly by myself.”

That was when my 17 year old nephew, who has a nut allergy, ate a sandwich with pesto in it. He didn’t go into anaphylaxis, but he had a shot and a cannula and that’s a HUGE deal to healthy people. And a huge deal of it they made, with outpourings of sympathy over social media and everywhere. And I was worried about him obviously, and it sucked, but it showed me that people care so much more about him, because nobody gives a crap about when I am in intensive care fighting for my life.

“And it’s at times like this that I want people to go to hospital with me, to see what I go through, to gain perspective on a line hurting by seeing a central line stitched into the most sensitive areas humanity could think to develop major veins. (…) I am shouted at because not everybody has been through things like me and if I hadn’t been through all of that then it would be a big deal to me too. It never was.”

“I don’t even want to start uni work. I just want to [not exist].”

1/01

“I give up and I want to end it all, but after weeks I sent my friends messages to tell them what they mean to me, and their responses were adorable. I had no idea I meant so much to them, no idea what I’d done to their lives. And without knowing what I was thinking, Uni Pal told me that could I please not leave uni because I am her reason for carrying on, and the reason for (something else). And I remembered this life I have there that isn’t bad. And I want those people around me. I want to be enough for them. I will go back for them? I don’t want to go back, my brain hasn’t un-decided that it’s quitting. What I really want is to write a book. And then another and another and another. And get a puppy to train as a service dog. And a place to live, maybe rent a place here (where my parents live, where I grew up, the money I pay in rent for my 14 square metre room will get me a 3-4 bedrom house on a train 28-70 minutes from London.

What do I want for the next 364 days?

(a big long list including heart surgery etc. that ended like this)

  • I want to feel like it’s ok that I exist.
  • I want to feel wanted
  • I want to matter
  • I want to not hear the hurt and pain in the voices of people I’m meant to care about or whose lives my simple presence destroys. I want to die. I want to set them free
  • I want to feel like I fit
  • I want to be less lonely and alone
  • I want to leave university
  • And die
  • I want to die
  • But I don’t
  • I want to run
  • I want to go to Barcelona with my friends
  • I want to swim
  • I want to be the person they deserve or die trying to protect them from myself

I am poison

I want to not be poison any more. I want to apologise to every single person I’ve ever met and apologise fro my existence, for bothering and burdening them, for the fat that they had to meet me. I want to run back through time and build walls around myself to keep out the people I let in. I want to run back to all the times I survived when I shouldn’t and trip up the doctors that saved my life in the brink of time so that they don’t save it. I want to go back to [the main event in hospital that gave me PTSD] and tell the dying dregs of myself (because that’s where I really died, back then) I want to tell that girl to bite down on the scar over her radial artery. (Very graphic description of what would happen if and how that girl could do that). … Ans when she stops drinking and passes out she won’t bleed much more and it will be too late and she’ll be free from it all. I want to give somebody else all the extra time on the planet that screwed up girl has been given. My family hate me, but not me. They hate what I do to them and say they love me but they tell themselves that because they can’t not care. I am poison. I am a thorn. I am faeces, pure excrement. I do not belong. Two lines on this family tree will never join to me. The damage is done.”

And then I wrote out this

“[My name]

9/3/1996 – 7/8/2012

RIP

I just want to be I.P”

Because I died when that man… I died back then.

“My heart doesn’t want to leave uni – it has already left, and now my head realises that ni is not good for it, for me, right now. But my head is afraid that when this crisis clears, it will regret leaving. I can’t even think about starting uni work, I just meltdown at the thought.”

“They said we’d discuss options, discuss plans, but all of that is forgotten. It was just lip service – they stepped in and to them offering empty words was enough, they had done enough, the situation was saved. Only… It wasn’t. It opened a void, it tore my heart to shreds. There was relief, briefly, until I discovered that this was the end of their support, there would be no discussion, and I had to pretend things were better because they seem to think things are. And then it was assumed that I’m going back to uni, like I could suddenly miraculously cope.

They don’t know how to not un-help

I don’t want to go back. I don’t want to look a these people and they don’t understand that-

These people half care. They care as much as they know they should, it doesn’t run deep. The hurt runs deep, and they tell themselves to care. They’ll get over my death fairly quickly.”

This was a very twisted part of my brain speaking. I know it makes me out to be the sort of scum that should be at best assassinated and at least wiped off the face of the earth. So whatever you thought of me, I’m sorry. It isn’t my physical health that poses the biggest threat to my life at the moment, and with the state of my heart/kidneys, I fear that’s going to put me in hospital too.

There are more jottings. For another time. For now, I have to decide whether or not to give up the contract to my flat and move back with my parents. I have a couple of hours to make that decision, and have to be moved out by Monday. Guess that’s that then.

Feeling is so, so much more dangerous than not.

Really do not know why I shared this. My brain doesn’t care about anything at all at the moment, so I’m not yet drowning in regret over putting this lot out here but… I will, I think.

Holes, Holes, Holes…

How is it possible that people fall through nets which function so efficiently to catch others?

I have been trying to write things recently – words to leave behind that might tell my family how I feel, how I felt, how their net caught everyone except me and the ways in which it failed, so that the mistakes are never repeated. I was trying to write things because I wanted to be gone, and because the fluttering and hurting in my chest occasionally made me wonder if I was going to wake up, if the asparin in my blood would do enough to stop a clot from killing me even if I did. That’s the bad thing about understanding exactly what is going on inside of you – you know all the ways in which you can go wrong, all the ways in which you could lose your pulse irreversibly, how powerless you’d be to stop the cascade of events inside yourself that would lead to that moment should they start, and how easily and unpredictably they could start (with no way of stopping that initiation at all).

In my mind there is always a reason to fear not waking up. The above, most recently, is the front runner, but the things that were chasing me before are still nipping at my heels. They haven’t gone. A teeny tiny slip, a moment of taking my eye off of the ball, and I could fall into their hands. My health hiccups don’t take breaks – sometimes they rotate and take it in turns to put real pressure on my existence, sometimes they team up and from a deadly team, but there’s always one on-call. Skippy (my heart) has been happy for a couple of months and now he really isn’t, but the other stuff will not rest. Skippy will agitate it all, and it will all agitate Skippy. I wondered a few times what it would be like to be ill in a way that was horrifically unpleasant but not life threatening. I wondered, without the stress and fear of so much uncertainty and responsibility over your own existence, whether it is easier to… Be. I think that’s probably when I broke down in tears.

The rest of my (many) tears, however, have not been about my health (or about what made me cease to feel or think for a very long time, because my brain CANNOT go there). Health issues suck, yes, but they are my normality. This, now, is all I know. The fear is no longer a fear, but a weight. Sometimes my mum says I look like I’m carrying the weight of the world, but I only carry the weight of one world – my own.

In the last few days, as my brain has switched on and gone into numbness, and my oldest sister has been around from Dubai, I’ve been hit by family stuff. Not the usual fireworks that occur between me and a particular individual or the dynamics between me and my parents as a collective, but the more general stuff. Stuff like falling through a net that I watch wrap itself around people who aren’t even falling, somehow dodging the love passed between members of a family whose name I share but whose blood I don’t, and who make me feel that without even realising the impact of their actions (having my nephew in the house is NOT good for me at all, but I’ll park that matter right there for the moment).

Their safety net is not for me. Nor is their concern. For a long time, a very long time, I tore myself apart trying to be let in, wanting to be loved like I see them love my nephew, like I see them love each other, wanting to be close. Just to feel close. And then I stopped trying, like I did with someone I share a house with. Because if I didn’t try and I got no return, then that didn’t hurt so much. Only it still hurts. To want to fit and to never fit. To share their name but to not look like a single one of them. To watch them pour concern over each other’s trivial issues and not bat an eyelid at how many times I almost die. At me, when I sit in a room. In the posts they make on social media about sister-in-laws and siblings and… And I finally, finally realised that blood is important. Blood is belonging. And I will never have that. I am the odd one out, in genotype and phenotype (genetically and in appearance).

My mum’s family. Well, they aren’t close geographically or emotionally. My uncle lives in Hong Kong, my granddad moved to America and now Thailand, my grandma lives closer to France than to us… Aunty Godmother is great – she cares, but I think it hurts my family (and by that, I mean my mum, because she’s the only person in this house who seems to give a crap about where I am) that I spend so much time there.

I thought I was getting on a lot better with my mum. I rarely speak to Dad and have no real desire to interact with him, so we live two separate lives in the same house, and things work a lot better for me that way. His love doesn’t matter to me. I gave up on that a very long time ago. I wouldn’t know what to do with it if it was shown to me in the way it has always been shown to my little brother. But it matters more with my mum. I care a great deal about my mum, despite her accidental insensitivity about my emotional state, frequent tendency to shout, and general friction between us (she’s a perfectionist and I am far, far, far from perfect. I’m not even acceptable. Barely adequate. And my health isn’t even that). But all I wanted recently was my mum. I just wanted her. So I started stealing hugs from her, sort of ambushing her at (often inappropriate but) random moments and just wrapping my arms around her, showing her affection in the only way I know how.

I think she’s jealous of the relationship I have with the dog – she brings it up fairly often. But I thought we were getting somewhere. Acting falsely happy around her is enough to kid her that I am. She’s oblivious. She doesn’t know me. That’s my fault, but she thinks the child she knew is the damaged adult that I am. She thinks she knows my habits and how I work and she hasn’t know any of that for a long time. She has no idea who I am. The person who made me knows me the least. Anyway, she’s hardly shouted. For various reasons (mostly because I have no motivation to do anything, even to exist, and am in a very bad place emotionally) I decided I was done with uni. I want to quit. If I carry on, I want to move back to this house, to my old room (although NOT all the time my nephew is here, which made me just decide I should die instead because he’s here for another year and a half… Only I don’t want to die I just don’t know what else to do if I can’t be where I need to be, and so then my brain just crumpled and tears occurred… Thoughts are not helpful things at the moment). But I thought that my brain saw her as my mother again. I thought she felt close too. And then I said,

I feel like we’re sort of a double act.

How do you mean?

Well we’re going places together and we’re getting on-

We don’t always get on.

I don’t know why I expected her to run with it, to share the sentiment, to reinforce it. But that’s what I was looking for her to do. And I didn’t test the water. I stupidly thought it looked safe so I jumped right in – I don’t love, I don’t open myself up like that, and showing her affection (not love, affection) was a huge deal. I let myself be vulnerable in that moment and I looked stupid as a result. And then the wall went back up. And defensively I refused to allow myself feel anything towards her. Which hurt. Because I do. I was. Starting to feel again. And I don’t want to live here, I can’t stand to live here, but I’d been near tears the day before at the thought of ever leaving again. And so I ended up lost. No idea where to go, or what to do.

And so, on the eve of Christmas eve, I found myself laying on my bed, clinging to my great big Labrador and crying into his fur, and I looked at him – this great big bear of a dog who saw I was upset and knew that meant I needed a cuddle, and I looked right into his eyes and sincerely, with all of my heart, and through tears, said,

Thank you.

Thank you for loving me.

Thank you for just always being there. 

And I looked up at the ceiling and I said thank you for my dog. I wanted to go, and I’d been writing letters in case I did something stupid (don’t worry, I don’t have the balls or the motivation) but more because my body does such stupid stuff that I appreciate what a miracle it is for me to wake up most days. And I wanted to lurch towards death. I didn’t know how to, but I wanted to. There was nothing to me – no substance, no nothing. I wasn’t dead in my mind, I was numb but there was something in my mind because there was a heaviness – an emptiness that had a presence. But I didn’t. I was so lost in the world in that moment, and there was just this great big ball of fur in my arms, this physical thing that never stops showing me how much he adores me and literally follows me around the house as though he’ll die if we are separated for more than a second… And I just held on to him. My heart did another long run of arrhythmia, and, not phased (probably should be but hey), I asked it to just not, and I just held on to this great big living thing that looks at me like the sun shines out of my butt hole and refuses to stop loving me even when I don’t talk to him. I had no idea where I was in life or what on earth to do with it, or how to anything, but I had something to hold on to. And I could not let go.

I realised he was the one thing that could never find it in his heart not to love me, or even not to like me. We could never grow apart and there is nothing I can do to push him away. I can’t screw up, like I have with every human I’ve ever met. I regret ignoring him only to find that I have already been forgiven. We don’t communicate in words – they mean as little to him as they do to me. And in the absence of shallow words I know his affection is genuine. He makes me feel close to something. And that’s why home is where my dog is. That’s why I come home. Because my life felt so empty for so many reasons that I won’t mention, and when I suddenly find myself in the presence of something that is so protective of me, so intent on being by my side no matter where I go – so clingy and needy and desperate for my attention all of the time… It fills the hole in my heart that all of this longing just bleeds out of all day every day.

I honestly wouldn’t have made it past that moment without a paw to hold. I have shut all humans out at the moment. I feel like my family wouldn’t care if I died. I feel forgotten. I know I withdrew to places nobody knew how to follow me to because they couldn’t understand. I am hard to care about, and I am near impossible to love. I screw up. I hurt people by exposing them to my health issues. I try, and I don’t know how I try to be something that might be part of this family, I just know that whatever it is, it isn’t trying hard enough.

For the past few days I’ve mostly sat in numbness, re-writing a novel that I wrote when I was in sixth-form and watching films on TV while my dog lays on my bed with me… But sometimes (very, very often today) the heaviness of my emotional numbness gives way to this great big roaring ache that just makes me cry or curl up in a ball and pull a blanket over my head to block the world out.

My mum asks what’s wrong and I can’t tell her. I can’t tell her because she can’t see it. She can’t see my point of view or the reasons I feel the way I do, and she doesn’t want to entertain the idea that this family she chose for me isn’t mine to be part of at all, that it has broken me. So she’ll shout. She’ll tell me I’m being ridiculous. She’ll tell me I’m wrong. She’ll tell me she doesn’t want to have this conversation any more and that I’m talking nonsense. She’ll decide that she doesn’t need to worry because there’s nothing up, and a few minutes later will act like everything is fine and normal. Her way of coping, I guess. She knows our family is full of holes.

So I started looking for puppies online. I want one to train as a service dog, mostly to take away the fear that I won’t wake up by doing what my current (untrained) dog inconsistently alerts to, but also to help with my PTSD. I need a focus, and a reason to live, and a reason to leave the house (my dog can’t really go on walks any more). I love my current dog so much and I feel guilty because I don’t think I’ll ever be so attached to another dog, but fluffy cuteness isn’t why I want a puppy, I… It doesn’t matter, because my parents refuse to let me have another dog in their house.

I’m kind of trying to find places to live, and also trying to figure out how to live. At some point I should probably figure out how I feel about impending heart surgery and multiple runs of a new arrhythmia that my heart hasn’t been caught in before, every day (I am retaining so much water as a result of this that my stomach is so distended it just pushes my t-shirts up off of it so they look like crop-tops). I’ve had a lot of hospital appointments this week – discussions and scans of my head and hours spent trying to get blood from my scarred veins (waiting to hear the outcome from the surgeon that’s going to deal with that issue). At my appointment yesterday one blood level was so disastrously bad that the hospital’s machine couldn’t even measure it – see what I mean, not just one health hiccup trying to wreck my body! I should have panicked – the nurse did, but the consultant stayed a little more chill. Either way the discussion we had left me near tears when I left.

I should figure out what on earth to do if I leave uni – how to afford to live wherever I end up living (I can’t afford to live in London for another year so let’s hope that if I stay at uni I’m well enough to commute). I mean, I should do a lot of things, but today I didn’t get dressed, hardly left my room, and spent most of my time in bed (this is also partially due to my heart being AN IDIOT).

My family is super important to me. I long to be close to any of them and fail to do so. That’s why Christmas is so important to me – a day where I get to see lots of family members, and everyone is happy, and I can just sit and watch them all. Being out of hospital for Christmas is enough of a present for me, seeing family is the only gift I ever want. But this year I’d like something else for Christmas.

I’d like to feel like I matter to the people who are my world. Were my world. Could be my world again. I don’t even know. They just matter. A lot. They matter a lot to me.

I’m not blogging regularly at the moment. I’ve given up on people; I’ve stopped looking for safety nets and hands to hold and I feel like my words are pointless. I took a break for a few days and it’ll probably be quite a few more before I post here again. This is the new stuff, the stuff my brain breeds when it can generate thought. There’s a lot below the surface that I can’t deal with. I’m falling apart a little bit.

I need to figure out how to stop, and I don’t know how to do that alone.

Merry Christmas, anyway. And if I don’t post before, happy new year.

If you need a new year’s resolution then…

Don’t let people feel forgotten. Don’t be a hole in their net. Please. We assume people automatically know how much we love them or how much they matter to us, and I always try to tell people how much they matter because I know how much people need to hear that sort of thing. People need to hear it because nobody every says it. Your family, your friends… I don’t know, you could save them from… This. You could fix the hole in their safety net. They might never have to fall.