Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

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).

Beyond The End

I never in a million years thought I would write the post you’re about to read. I was planning something different. I was planning an end. I was so low that finally there was nothing left of me that had any strength to keep clinging on with nothing to actually grasp. My existential crisis became more of a… decision, and I made the call to buckle under its unrelenting persuasion. I couldn’t find anything tangible. Couldn’t think of anything realistic to hope for. Was so defeated (hate using that word), so full of a (pathetic) despair that I was willing to do anything just to stop feeling so unwell for a moment. I wanted a break from a reality that I could no longer cope with, and could find nothing to help me handle. That’s not a luxury life grants often.

And then one of the girls I met at the Bastille concert asked me for my email address. It was late. I gave her my email. Shortly afterwards an email popped up in my inbox entitled “Bastille Union Chapel” which is where I’d seen them on the 22nd of May and also where my heart had rendered me a useless heap on the floor while they performed. It was from one of their management. I opened it. After a short “we heard you had to leave” message was a link. I clicked it. A video came up. A couple of members of Bastille sat in a room on chairs, and said hi to me. They said they were sorry I had to leave, they wished me well, and said I could go to any show I wanted. This was confirmed in a later email, and it doesn’t even matter that I can’t afford tickets.

I was (and still am) completely baffled. I wasn’t expecting anything like that to happen EVER and also I just really don’t feel like I deserve something like that because well… it’s just me, and my self hatred tells me someone else should get that experience in my place. 

Suddenly though, there was this genuine smile on my face, and this weird feeling so pleasant and foreign it was almost uncomfortable – happiness. I was happy. I still am. It felt like this huge thing built up within me fighting against the doom and gloom, and finally all the things eating me alive burned away and I took off. It felt like flying. It felt like freedom from chains my health had placed around my mind. I had been so empty and full of desperation and despair I was ready for the end, and suddenly there’s this smile that won’t leave. There’s something to hold on for, an end goal, a reason to the pointlessness it felt everything had become. I didn’t think I’d find that. I didn’t know how to be happy. I thought my heart had ruined everything. It feels weird to be happy. It feels wrong. It feels kind of unnerving but I can’t help it. I get to see that music live again. The thoughtfulness kind of hits me more than anything – that this girl I’d only just met messaged their management and made this happen, and it turns out my friends had been emailing and tweeting people too (I thought they were joking). 

Now suddenly I want the heart surgery to work, where before I’d been hoping the guy would slip and just set me free. I have this great thing to look forward to beyond the void I have to go through first. They’ve given me something to hold on for. 

People keep telling me I deserve this but I don’t. Far worse things happened in the world that night and it’s hardly the band’s fault that I had to leave, but this has happened at just the right time. Spooky. Undeserved. But SO AMAZING. I’m beyond grateful. Beyond appreciative. Beyond the end that I’d been planning.

Bastille – 1, Skippy (my heart) – 0

Oh how the tables have turned. Turns out Skippy couldn’t wreck things after all.

“Hold Me In This Wild, Wild World”

Posting hasn’t felt appropriate over the past week. Turn on the news anywhere in the world and you’ll know why. Terrorism is something that has left a raw and ugly mark on many families, including my own. It’s a paralysing wound that gushes with each new act of hatred, but in our family, it is a wound that has not given rise to the same hatred that caused it. Time and time again, this country refuses to breed the hatred that deranged people try to inject into it. It unites against the cruellest acts imaginable, it grieves, it remembers, it never forgets, but it carries on. There are no words for what happened in Manchester. Only tears. But I will say one thing: If you want to see what muslims did in Manchester that night, please turn on the news again and look behind the news reporters. They stand in police uniforms, in paramedic uniforms, they are behind the wheels of taxis offering free rides to anyone and everyone. They are caring for the injured, they are protecting the public, they are comforting parents and children alike. They are among the injured. They are among those healing and helping and protecting. They are us. Some people will generalise an entire culture or religion based upon the acts of a few people, and I have to ask, isn’t that what the terrorists have done to us? I wish people would think on that one, before they started spreading hate.

It feels wrong to talk about me. A couple of people have emailed me multiple times asking me to post an update here, and this is my best attempt. But I want to clarify that the above paragraph is the most important one of this post. I don’t matter. Please realise that. The incredible people of Manchester should have your hearts and thoughts right now.

No words other than “WHY” feel right to me right now, so I’m sorry if I pick the wrong words.

On the night of the Manchester attacks I had been at a concert myself. I queued for 3 and a half hours in 27 degree heat to get a seat 5 rows back from the front in a church. It was a charity gig, and I was there to see Bastille (y’know… the band that produced the sounds that saved the parts of me that medicine couldn’t). The what is the world coming to theme of some of the songs was scarily relevant, although we didn’t know it at the time. Music is this magical thing. Concerts are this magical, uniting experience. To target that… I just can’t. I felt guilty for leaving the gig safely.

I did leave the Bastille gig safely, but I also left it in an ambulance having spent 10 minutes unconscious while Bastille played and my heart (after an afternoon of protesting at the heat) finally decided it couldn’t maintain the way it was beating any more, become exhausted, and had the mother of all tantrums… The paramedics were rather alarmed by my heart tracing, refused to accept I was feeling fine and rushed me to hospital with blue lights, whilst repeatedly telling my friend to get everyone she knew to tweet Bastille and tell them what had happened (I think/hope she didn’t. Not appropriate, given what else happened that night). Stupidly, selfishly, when I got to the hospital, I cried. I was in pain, I’d spent the previous few days unable to even get out of bed, lungs full of froth, head spinning, and the only thing keeping me going had been the thought of that gig. My health had taken a magical experience away from me and even though my friend had gone back in to watch a few more songs I felt awful for wrecking her night (she admitted a couple of days later that she hated me a little bit for her missing it, which is kind of why I’d insisted she went back inside and just called my mum). Nobody told me I was pathetic, they told me to cry. I soon stopped myself. Had no right to.

A few hours later I burst into tears again, because news of Manchester popped up on my phone screen. I read out what had happened and everyone just stopped. We were all just stunned. Sickened. I felt stupid for people fussing over me when that had occurred. I wanted them to leave me alone and somehow help the people in Manchester. I myself wanted to go to Manchester and help (not that I could have, because at that stage I couldn’t stand). We felt so helpless. I felt so stupid. I told them to just leave me alone and let me go because Manchester. They told me it didn’t work that way, that my heart was having a pretty serious issue of its own and I needed to focus on that. But I couldn’t. How could I? How dare I? It brought a lot of memories back, I could relate to what some of the families were going through. My imagination filled in the rest. I wanted to take it away. We all did. Anyone who read that news story wanted to run back in time and take it all away. They were kids. Kids. People having the time of their lives at a gig.

I was, and still am, incredibly, incredibly grateful to be safe. I spent 16 hours in a resuscitation unit with concerned doctors trying and failing to gain control of my heart. A consultant cardiologist appeared several times, looked at the ECG tracing on the screen, told me he wasn’t happy, and eventually stood and gave me an IV drug. And then some more. And then more… Until he finally stopped after giving me 4 times the dosage the other doctor said he usually used for a grown man. My heart sort of partially complied, then decided it had only been joking, and then everything started to go black intermittently. By that stage, I didn’t care about my heart. I felt guilty for becoming unwell at a completely safe and normal gig, and for having the nerve to have felt down about it.

Eventually at some point late on Tuesday I made it to a ward, where I remained attached to an ECG monitor and an IV and several other wires. We tried other heart drugs with very little success. I couldn’t walk more than a few metres before I started passing out. I could barely stay awake. I wanted to leave, I had an exam on the Wednesday morning, but the doctors were too concerned to let me out. So naturally on the morning of my exam, barely able to remain awake for more than a few minutes (and also having gone into – and then being rescued from – acidosis in the early hours of the morning), I disconnected myself from everything, met my mum outside the hospital, and she drove me to the other side of London to sit my exam. Hadn’t revised at all. Couldn’t actually focus well enough to read because I was so spaced out. Hadn’t worked out how I was going to walk to the exam room. Stumbled along leaning against walls, with everything fading to black and my heart desperately trying to keep up with the whole affair.

I was still wearing the clothes I had gone to the gig in, ironically, a t-shirt with a Bastille lyric on it which read This is your heart, can you feel it? I completed 45% of the exam, with black gaps in time making the whole thing very confusing to attempt, and then the blackness overwhelmed me and, realising I was beaten and couldn’t even press the right buttons on the keyboard because I was so out of it, I gave up. I met with my friends, my chest hurting because I’d walked a short way, and as they all went to the pub I got in a cab to the hospital. The doctor had phoned me shortly after I left. I told her I was going back to get my stuff and have the line taken out. I went back to do the whole paperwork thing as well, and then sat outside by the underground station. Two of my friends sat with me and we ate McDonalds. I listened to this man pick up a newspaper and make a racist comment about a particular religion as he read about Manchester, and my heart just broke for the world. What is the point of hate? What did it ever achieve? Why? Just… WHY?

I got distracted a little from my despair at the state of the world (can I just also comment upon the kindness and resilience of the majority of people who reside within it, which has become evident this week).

I had forgotten what it’s like to be unwell with a heart. Properly, properly unwell with a heart. And I haven’t ever been like this. I woke up the next morning and I just couldn’t move. The world was spinning, my pulse was very fast and very weak, I was coughing up froth and I felt like I was breathing in soup – I could hardly breathe. I was laying still in my bed and my body was behaving like I was running a marathon. It was so exhausting I didn’t know how I could keep it up for long at all, and that was a slightly alarming thought. I couldn’t lift my head. I couldn’t lift my arms. I was stuck. My head was pounding, I didn’t have enough breath to talk at first. I felt dizzy and spaced out. Things kept going black and then suddenly someone would press play again.

And that’s when the existential crisis begun. It’s a frightening, exhausting feeling and I just wanted it to end, but I couldn’t find a way to make it go. I didn’t know how to endure it, I just wanted a break. Physically I have been like that most of the time since I came home. Waiting to see my cardiologist. Waiting to hear about what comes next, because apparently his experimental new procedure is responsible for all the new cardiac upset. Mentally, I’ve ended up in a very, very low place. My counsellor video-called me because I was too unwell to get out of bed, and even she was concerned. I just seem to have deflated. I don’t have any energy, and everything takes about five times more energy than normal, and mentally I can’t really find anything to hold on to. I know it is pathetic, but the doctors said it was a normal reaction, and apparently an overdue one. Doesn’t make it right to me. Especially in light of what has happened in society lately.

There are better moments. I can sometimes walk when my heart is having a better moment, but I get very, very breathless and then everything sets off again and I lay propped up and unable to function. I’m unable to go on our family holiday this summer or to the Imagine Dragons concert I was hoping to take my little brother to next week, because my heart cannot deal with heat or standing. It has felt like my heart has taken everything away from me except my pulse. I am utterly empty and yet at the same time unimaginably heavy. I, like so many of us, am in despair for the world. But I am safe. I left the concert in one piece. I came home.

I am broken, but I have no right to be broken. I have no right to pathetically indulge my own weakness. I have no right to long for anything. I am so ashamed for being so awful as to feel those things. I am grateful to be safe.

Whichever faith or god/gods you believe in, please put in a good word for the people of Manchester tonight and for the families whose worlds will never be the same again.

And if you want to get rid of hatred, don’t be like that man walking out of the tube station and spread hatred. It’s already done enough damage, yet it still hasn’t won – proof that it’s a wildly ineffective strategy. You know what will end the hate? The opposite of it. Don’t throw fuel onto this fire. 

Sorry if that just really angered anyone. I was being really pressured to post and I can’t really think straight and I really, really didn’t mean or want to be insensitive. Forgive me.

 

 

(The quote that is the title of this post is a Bastille lyric taken from the song “Warmth” released in September 2016… Don’t want to plagiarise if that’s even a possible thing here, so just to clarify… My brain did not generate those words. They’re relevant right now though, and I can’t think of any others).

“An Act Of Kindness”

I’m kind of embarrassed to say that things lately have been becoming increasingly… tough (I hate the ‘t’ word, because I’m not sure I’m justified in using it to describe my circumstances EVER). It feels as though I’ve been watching every element of my life slip away around me, with not enough hands or enough strength to catch the parts worth saving. I’m always very aware that I’m lucky (incredibly so) that my life isn’t awful. There is a huge capacity for it to have been much, much worse. I always use that attitude to drag myself up out of the places my mind gets stuck, tell myself I’m an ungrateful idiot, and move on. But things pile up. Normal 21 year old things, the impending doom of exams that I’m far too unwell to prepare for (and may not even be able to sit, as they are only next week), a crime committed against me in my own home, the huge emotional mess that existed before and after that, family disasters, and all the health stuff etc. etc. Not the end of the world, and maybe manageable one at a time if I wasn’t so mentally exhausted. But I kept going at the thought of heart surgery, at the thought that it might fix everything and I’d wake up an entirely new person.

For most of yesterday my heart rate refused to dip below 150. With all the marathon headlines floating about, Skippy (my heart) seemed to think we were running a marathon. I slept most of the day, not by choice, but because I couldn’t fight it. I couldn’t catch my breath. Eating was a strenuous exercise. So strenuous in fact that I almost passed out in my dinner. I was a dizzy heap of pathetic incapability that infuriated me. Skippy just said no. He hurt in extraordinary ways. My left arm went dead. I could barely function. Surgery was not meant to do that to Skippy. It was meant to appease him and every aching moment of his freak-out was an anchor pulling me back to the reality that things hadn’t worked. In fact, things were significantly worse. And that… That was a bitter pill to swallow. It made all of me sink.

Then I got a message. From Portsmouth Uni Friend. She told me she had a surprise, and sent me a link. To this. A small charity gig, featuring none other than Bastille. In Islington (an area that just reminds me of the hospital Skippy and I used to go to near there). On the 22nd of May. She knew how much the music of Bastille has meant to me through some pretty tough times, what it stood for, what it got me through. And she said, “shall we go?” And then another friend messaged, saying she knew how much that music meant, and she’d even buy my ticket. With the track record of things that seemed too good to be true turning out to be… hopeless hoping, I didn’t think anything would come of it.

So I went to bed. I was up all night, and I was scared. I stayed up until 3am, with Skippy racing the entire time, feeling almost as tired as I was in the end. For some reason, if I sat up and turned the light on, I was sure it would stop him from stopping. It was irrational for me to think I might never wake up, but after surgery Skippy is a beast I no longer know. He’s different now. Alarmingly so. I drifted off. Palpitations woke me from sleep. Chest pain stopped me drifting back off. Over and over again. I’d sit bolt upright and just hold my chest and oddly enough… Talk to the freaking out ball of muscle beneath my sternum. Skippy didn’t listen. It didn’t stop me telling it ssshhhhhh, it’s alright, over and over again. I was too wired to sleep. So I put in my headphones, and listened to Bastille’s Pompeii on repeat, because from the first time I ever heard that song, it has never failed to calm me down. I haven’t had a night like that in a very, very long time. It was draining. I was scared by it, stunned. I hadn’t expected it. I woke up almost afraid to stand.

With my heart in such a state, I naturally began thinking about the consequences. My exams start next week, and I would be in no state to sit them in my current situation. Then what happens to my third year of uni. Come to think of it, with a heart like that, how would I ever get a job? I wouldn’t be able to go for a walk, and I’d certainly never run again like I dream of being able to do. And my thoughts frantically raced around my brain trying to find something that might be unaffected, and there was nothing. Skippy has a hold of everything, and when he rebels, I lose it all. So I was searching for something to wake up for, to carry on for, to motivate myself with… And I just watched everything slipping away. Stupidly,  I couldn’t find anything left. I was so tired. With all my health issues. But mostly with the idiot inside of my chest. Skippy in his current condition isn’t going to kill me, he’s just “limiting your life” in the words of my cardiologist (which tells me that there isn’t really any reason to be significantly bothered because hey, the thing could be about to kill me and it isn’t). But still. I ground to a halt.

And then this morning, at 10am, with Skippy still shaky and determined to misbehave and me trying and failing to focus on revision through his aches and grumbles, I got a message. Two tickets to see Bastille at a pretty small gig. Me and Portsmouth Uni Friend. HK Uni Friend adamant that I would not pay a penny for my ticket. I was, and still am, astounded by their kindness. Completely. Astounded. In fact, it all seems a little surreal. They simply said I needed a reason to be happy. They said I deserved it. They said my life was unfair. I don’t deserve such awesomeness, and there’s nothing unfair about my life at all; in fact, I’d rather me go through all of this if it means that somebody I know or care about doesn’t have to go through it in my place, and I am frequently thankful for that fact because I think that’s… Fair.

And now there’s something to look forward to, something Skippy can’t take away, because even if I have to crawl, I’m going. My friend pretty amazingly said that even if we go and I end up unconscious (as I did on my birthday when we went out), it will be entirely worth it. And that’s pretty much my view. Skippy is wrecking a lot of things at the moment, and right in the middle of the void that has created, there’s now something to aim for and look forward to and… Be on the planet to witness. A calm, right in the middle of the storm.

And that’s all I needed. Something to look forward to. Because nothing seems bad anymore. I have perspective again. I’m sat here with Skippy still being an idiot, waiting for an arrhythmia nurse to call and… I’m lost in this awesome little bubble of happiness where fear cannot find me. I have something that makes me feel 21 again instead of 80, and I kind of live for moments like this. Where normal 21 year old things happen. I just suddenly have this overwhelming feeling that things will be ok.

It all works out in the end, I guess.

You don’t appreciate solid ground until you’ve been lost at sea.

(Also, yes the title of this post is also that of a Bastille song. Very fitting today. My friends are… well, I don’t deserve them at all, but they mean the world to me).

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.

 

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

Does it almost feel like you’ve been here before?

How am I gonna be an optimist about this?”

Bastille, Pompeii 

“There’s a pain in my heart and a pain in my chest

I wanna feel human again

There’s a pain in my head and I’m losing my breath 

I wanna feel human again

Human again”

Kodaline, Human Again 

As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.

(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)

In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).

I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.

Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.

After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.

I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.

I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.

To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.

So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)

But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

The earth it shifts, and I’m on the other side 

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).

Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.

In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).

Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.

This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.

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.

Blunt.

This post is less interesting to read and more… Life. There is an expectation for me to post, and absolutely no desire to do so on my part. I’m prioritising my attempts to get a life (which, after my birthday for a brief period were going extremely successfully). Things are tough right now. I’m going through a lot, and I have needed, and continue to need, space to fall apart and re-assemble into a human that can deal with this situation. Forgive me for that (and probably for the standard of this post). Also, trigger warning (I’m getting so sick of writing that so sorry if you’re sick of reading it).

My birthday was great. Seriously, it actually was. My smile was genuine for the first time in months. I was given the present of human presence, and managed to gather six other humans to join me for a meal out in Covent Garden (London), and then a trip to a gelato place (where I had the most delicious crepe ever and they cut the ice cream into the shape of petals so it looked like a rose in a cone) and then a slow stroll along the Thames. Many photos were taken by my friends so I have memories to hold on to. I have never laughed so much in my entire life. I felt 21. I was with people, I was back where I loved to be. I felt like I mattered but could not comprehend why… And I was so stunned I just couldn’t believe it was real. 

So reality hit me. Or rather, Skippy (my heart) teamed up with reality, and I was rendered unconscious on the London Underground at a tube stop that means both uni and (until the new year) home. I was beyond devastated. My heart was being an arse, basically. As the paramedics wheeled me through the ticket barrier before carrying me up two more flights of stairs, I made them stop so I could tap out my Oyster card. This was, and still is, the achievement of the year for me. After the paramedic telling me that if he let me out of his ambulance my heart would probably stop and he’d just be following me round London all night scraping me off the floor (he also told me I’d just have to have a second birthday and do it all over again just without the hospitals), I ended up in A&E with three of the best humans to be in A&E with. They stayed, they entertained, they made me laugh, they calmed me down. They went out and brought back McDonald’s at 2am. They were totally chill. 

My heart was totally not, but that was fine because my surgery is on the 22nd, so I was told I really did need this procedure, and to take it very easy until then. This procedure, if it works (50% chance) is going to change my life. The reluctant and cautious hope that this slow and involuntary realisation injected into my mind, filled the cavernous void of nothing that had opened up within me. And there was suddenly… A point. There was a point to me again. There was a point to existing, or at least, to resisting the urge to terminate my existence. There was a purpose for every action. Because there was a future. A chance at one. 

I’ll be able to attend lectures at university, I’ll be able to walk about without sleeping for six hours afterwards, and I won’t be worried about the ticking time bomb I feel lives inside of me. No more fear. Or at least, less of it. And maybe even at some stage, a chance at running… A chance at a life. A chance to be closer to normal than my heart has let me be for a while, instead of sleeping all the time and breathless and swollen and wheezing and unable to even lift my head sometimes. And that picked me up. For the first time since November, I was an almost fully functioning human. In three days I did 24 hours of work. I made lists and organised myself, and got into a routine. I started showering every day again. I cooked my food from fresh instead of buying something factory made. I let myself hope. I lost myself in this protective little bubble that surrounded me even in the tough times, warding off the worst and keeping my mind (and my mood, most of the time) intact. It was like having a force field and a superpower; a presence that I welcomed with relief. And that’s something I never let myself do.

It’s something I shouldn’t have let myself do. It’s something that is never safe. In letting myself climb and be lifted, I set myself up for a fall.

My surgery was cancelled last week. A “life or death” maternity case needs the slot. Two lives lost without it I guess. All of the above stopped. I lost myself in a void. I very nearly terminated my own existence. I very nearly drew my own blood. I sat in the darkness on the floor for three hours and cried. I lost everything, because I lost the hope I had accidentally been relying on and I was in no state to survive the fall. There’s a time when I probably would have explained my feelings here, explained why I was ashamed and guilty for attaching enough value to myself to feel upset at all and all the rest of it. But it still doesn’t feel safe to share here at the moment. Needless to say I have relapsed a little. Less so now. Denial is my home again. And it’s where I’m going to have to stay. My fellow third wheel and I are going to London tomorrow for the day – we’re going shopping and to see a film that he’s seen but that knows I really want to. We were meant for be going for a drink, but I can’t do that now. My entire family is against me going. If I go to walk anywhere or do anything they tell me to think of my heart. But life is about both mental and physical health, and I cannot just sit festering in my thoughts. 

I don’t want to be limited. I physically feel, and am being treated, like I just turned 80. I need to go places, see people, let my mind feel 21. Yes my birthday annoyed my heart, but I was on a knife edge and had been planning on ending my life. I’d go through all the heart drama again for another evening like that. When I’m thinking of other stuff, I forget that I’m scared, I forget that I’m lost, and I forget that I’m hollow. I hate my body right now. I’m angry at it. It’s all that people see, and now those people are joining forces and helping it to limit me. Every part of me rebels against that. I won’t stop everything, why should I? Because a cardiologist took away my hope? Should I die inside to stay alive? What is the point in existing if you have no will to live? I’d top myself before I ever made it to the 19th of April, without continuing my walks in the woods, and the chance to socialise (because this house is NOPE).

I was meant to be having surgery to remove Cedric (growth in my nose) on the 12th of April, and now can’t have that general anaesthetic, because my heart is an unreliable poop. Cedric has now grown to such a size that he obstructs my entire nostril, and is also pressing on a nerve, resulting in nerve pain that runs from my sinuses right through my face and down into my front tooth. Cedric was meant to be removed ages ago, and the surgery has already been delayed 3 times because of my heart. 

My body continues to rebel. Along with the new Cedric pain, Skippy has decided to intermittently hurt in ways he never has before. Through to my back, numb left arm, neck, jaw and then pain in my jaw… Accompanied by the urge to vomit and a tiredness so overwhelming I cease to function and then sleep for hours. I tell myself that I am an idiot, and it will stop, and that there’s nothing that can be done until that procedure (which can’t happen any sooner because it is such a complex case that it needs specialist people present)

And if they are rebelling, why not let my immune system join the show? Yesterday I changed my infusion set to find a small volcano in my stomach (a red lump with a hole left by the cannula in the middle of it which usually closes up pretty quickly). Grossness occurred, confirming my suspicions that somehow my immune system had allowed my subcutaneous tissue to be infected by a supposedly STERILE cannula inserted into a THOUROUGHLY DISINFECTED site. So I went to the GP today. I’m meant to have antibiotics at home because my immune system loves to welcome visitors into my body so often, but I ran out, so she prescribed me enough for my acute issue, and then some more to replenish my supply. She investigated the hard lump that has formed deep below the little volcano, and concluded that it was a collection of infected material and/or gloop about half a centimetre beneath my skin which was pushed much deeper by the cannula and has decided to set up home. If it doesn’t go down within a few days on antibiotics, or gets worse, it needs to be operated on. BUT… MY HEART + surgery that isn’t specifically for it = NOPE.

I’m dealing with normal life stresses. Family dynamics and issues that make me feel… like hurting just to replace the emotional pain with something that can’t last. Behind my health, I am a whole normal person, and most of the time normal life stuff is harder than being unwell. People forget that. I can’t talk about my emotions right now. They are… for my mind only (and my counsellor, a fairly recent and priceless addition to my life) and I cannot deal with being misunderstood right now. 

Reading all this, things aren’t even that difficult. I just no longer have the strength to remain resilient, and letting myself go through the process of feeling what my brain decides to feel stops me breaking down again. I’m trying to find my motivation. University are being absolutely amazing and offering me support that makes my life so much less stressful, so that makes it slightly easier for me to try and think about uni work. But honestly, all I can do right now is hug my dog and play Sim City and go for long dog walks with my surrogate mother (next door neighbour). I’m trying to get a life. But before that, I need to just figure out how to get to a place where I can start. 

I know it’s only four extra weeks until the surgery…

But 4 weeks is a long time to be scared.
Despite featuring in this post, my heart just isn’t in it. I hope you’ll all understand if I just stay away for a while. This just isn’t… Me, right now, and it’s hard enough trying to act more ok than I am on person, I just want to withdraw and just… Rebuild. Possibly. Because honestly, I’m on the edge of existing or erasing that existence right now, and I’d like to try and go with what’s right by everyone else, instead of what’s easiest for me. Which is going to take… Everything I have. 

Testing The Water

After a somewhat un-anticipated and gratefully welcomed hiatus from blogging, I find myself sat in front of a computer screen with not a lot to say (cue one of the longest blog posts I’ve ever written. With its inevitable trigger warning). This time, you do not want to know the places I have been, and I feel too vulnerable in sharing them to ever let them escape my mind. The general reaction is usually that my mind resembling the scene of some sort of natural disaster(/desert littered with corpses that all look like me but represent slightly different parts of who I was) is fully justified by my health hiccups and the frequency with which the grim reaper and I make each others’ acquaintance. That general reaction overlooks one very important thing: me. It overlooks the fact that I am an entire person beyond my health, with an entire life that exists and functions beyond it.

I had a breakdown. I tried for about a month to cover it up. Making it to the end of the day was exhausting even if my health hiccups behaved, because I was pleading with the 99% of me that wanted my life to end, 24/7. And I wasn’t winning. There were so many reasons why. And this wasn’t a safe place to share that, because in various ways I’ve been used through this blog, and testing the water left me scalded. My mind became a prison then, me locked in a cell with thoughts and memories that over and over again reinforced my low self esteem until it built to a self hatred so intense I felt unworthy of everything, even food. The effort of that constant argument took everything I had. Until there was nothing left. There was nothing left to obstruct the 99%, so it became 100%. Only, that wasn’t what I wanted for myself. I wanted the situation to end. I wanted a life, or a death, and the former seemed an impossibility and the latter the only realistic solution. It wasn’t desire driving that feeling or that thought, it was desperation. Sheer, hopeless, defeated, desperation. And my family had no idea the true severity. They had no idea where I was, and where I am. They have no idea who I am. Life itself felt like a prison. I just didn’t have the motivation to try to escape.

In itself, that led to a whole new desperation. And that desperation coupled with misunderstanding and insensitivity that has led me to withdraw from the members of my family as much as I can, led me to counselling. Don’t judge me for that, I’ve already judged myself enough. I’ve already decided it was pathetic and my feelings are unjustified. But that woman single-handedly saved my life, and changed my life, in ways I never thought some words exchanged between two individuals sat in a rented room in a church ever could. I like order, I like to understand and process and let it settle and pack it away and move on. And there are things so big and traumatic and unpleasant that I cannot touch them with a barge pole. So I hide from my own mind and in doing so dug myself into a hole in which I was suffocating.

Sitting in that room I was very sceptical. I cannot talk. I do not open up. But desperation drives uncharacteristic actions. She poked the hornets nest, and my thoughts swarmed. Two sessions a week. Sting after sting. And the hornets only went for me. She understood. Nobody has ever understood. My parents won’t. Cannot. And that hurts. But to finally have someone who takes the mess and sees the same stuff as I do within that mess… Magic. She told me I’ve been through hell. And in (2?) months, we haven’t really got round to my health issues. I am so tired of being viewed as the unhealthy person that I have completely dissociated myself from my body and from my health. My body is not me. It serves me, albeit badly. My health is also not me. Take it away, and I have a life. Take my life away, and there is no health. Therefore, health does not equal life. They exist independently, and the lines are so blurred that people associate my face with a whole list of health stuff and medications and a medical history instead of me. In the past two days, I’ve suddenly started to force myself to function. I have found the free energy to plan, to aim, to set myself simple tasks and shut out the world and not care when my parents disapprove and just rebuild.

I turn 21 on the 9th of March. When asked about my birthday by my counsellor, I burst into tears. I had no idea why, I hated myself for crying, I felt stupid and I hadn’t expected crying to steal my words at all. But birthdays are a big deal when there have been so many times in the 364 days between them that you don’t think you’re going to see another one. Milestones matter, and birthdays are the only “everyone else” milestone my health has yet to take from me. They just matter. They are the one day a year when an individual matters, when people stop and acknowledge you and focus on you. And I squirm at attention, but birthdays for that exact reason are the one day of the year when I see how much I’ve lost. Not in terms of things or time, but people. People who think I matter enough. Because on the other days of the year, their absence stings, their failure to reply or the fact that they forget you exist is painful and understood and in my case justified because I am nothing special. But on birthdays, that absence and silence is enough to kill.

This time 365 days ago, I was in an ICU bed. I had been told, exactly a month before my birthday, that I wouldn’t survive a particular medical emergency again and at the trend we’d observed, it wouldn’t be more than a couple of weeks until it occurred once more; then the guy whose job it was to try and stop it told me he couldn’t. I broke, but nowhere near like I have broken now. I had support, in the form of a uni parent, who grounded my panic and was very right about worry being unsustainable. I walked along the Thames and I enjoyed every moment because I could feel “it” coming. I was in ICU for (6?) days. People forgot they said they would visit, so only one person did. (I am never around. Even now, I am not well enough to attend university and am only going for assessments. My friends see each other every day, they are constantly reminded of each other, they grow closer and closer and I drift further and further out of their minds. Its understandable but it reinforces the idea that I could die and there would be minimal impact to anyone anywhere) And my birthday loomed. The day before it arrived, I figured out how to walk again. My legs shook, but they held me up. And nobody would do anything to change my treatment plan (I literally have to force changes by making them myself, proving they are more effective after stressing about keeping myself alive and juggling the situation myself, and then my doctors are like – oh yeah ok that seems to be working tell me what it is lets stick with it. I have my back. I haven’t even seen one health team for a main hiccup this year. I’d rather go it alone. It feels safer. I know that I can be trusted with my life. Nobody else makes the effort in this field, I am just “a lost cause” I guess, to them). So I asked them not to move me to the ward as they planned to. I went to see The 1975 in concert in Brixton with a friend who completely unintentionally tore my mind apart subsequently. But it was the best night of that year. I felt alive. I had cheated death. And I had never felt so alive.

So the 8th of March… Has become significant to me. An occasion to be marked. An achievement, to be free. This year I’ve bought tickets for me and Uni Babe and Uni Pal to go and see Russel Howard at the Royal Albert Hall. When I was a teenager living on a paediatric ward tied to IVs, I watched that man’s gigs on my iPad ALL. DAY. LONG. I felt ashamed for buying myself a ticket, because it is something nice to do and my brain right now tells me I deserve nothing. It actually disgusts me to do anything for myself, especially anything pleasant. So I’m really struggling with the idea of birthday presents. I like to buy presents for important people in my life on my birthday to thank them for being in my life. But finally, I am angry at those people and the things they have done to my mind, or stood back and let happen, and I am so distanced from them I do not know what to buy. They don’t deserve the burden that I am. I don’t deserve their love, when I cannot return it. Because I cannot love. I am too damaged to do that, too afraid to ever let anybody in. I don’t even trust.

Skippy (my heart) is running me into the ground. I get breathless from walking the shortest way, I can’t breathe when I lay flat, I look about as pregnant as my personal tutor (who is actually 8-9 months pregnant) and I feel unwell. Really unwell. Occasionally Skippy’s displeasure seems to somehow trigger events that leave me on the edge of acidosis.

On the last Friday of February, in the middle of a lab, Skippy decided to do ALL THE ABNORMAL THINGS. My atria freaked, my ventricles subsequently joined the party a little bit. And the director of taught programmes happened to walk in as I was passing out. The guy terrifies me and I thought he was going to ask me to leave the university. He handled the situation so well. It actually made me make a truce with him in my mind. He knew my name, he knew me, he remained completely calm (on the outside) and he showed all present that he actually has a huge heart. He crouched next to me and just talked as my speech got really slurred and I stopped being able to talk and almost passed out on him. He saw I was scared, he told me to stop apologising and not to be embarrassed, he talked me into going to hospital, he held a meeting with my disability advisor and actually offered me support and asked how I was and said that he had no idea where I’d got the idea that if I missed any more uni I wouldn’t get credited with my degree (as I was told MANY times). The paramedic took up where he left off. I wanted to get the train home. All the paramedics said no. And the uni staff. I sat, and when the paramedics realised I could actually read my own ECG, we kind of started a bit of banter over the bits that were abnormal and upside down and suppressed and shortened and rogue.

When my P waves returned and decided to be the right way up, I tried to stand, and ended up back on the floor re-attached to ECG leads all over again and my ventricles deciding to occasionally do their own thing. Got carted off in a blue light ambulance, in which I was like “no I can stand yeah sure” and then passed out… And basically my heart just freaked everyone out. The ECG in the hospital suggested the arrhythmia had led to anterior ischaemia. We didn’t test my troponin levels (a chemical whose presence in the blood indicates heart muscle damage) because the doctor knew it would be high (meaning she would have to repeat in 6 hours) and remembered me from a very messy central line insertion in resus that went wrong and that her boss had to do, so knew how terrified I am of hospitals, and decided it would just stress my heart more if I stayed. I was told to contact my cardiology team and stuff. I haven’t. They know. I’m having surgery on the 22nd of March and I honestly can’t wait. I just want it to work. It’s a chance at the life I never thought I’d ever get anywhere close to again, and I am so unwell at the moment. Since then, I’ve hardly been able to human due to the effects of my heart being a poop. I didn’t think I’d notice any after-effects, but I really am.

My thoughts throughout the whole event went something like this:

Why is everything going black? Whoa, my chest feels funny. But it’s fine it’s not… OUCH… Should I tell someone? I’ll stand up… Well that was a bad idea. OMG THE DIRECTOR OF TAUGHT PROGRAMMES NO, Skippy really? Here? Now? It’s reading week next week and you choose HERE and NOW?! Quick, get out of the lab. Ok no, can’t get out of the lab. Attempted to leave the lab anyway. Then my lab partner got the lecturer leading the lab who was not as chill as the DOTP. NOT (DOTP) OMG. Skippy, what are you doing? I’m going to kill you. Ouch. Ok. Please don’t kill me first. Why? What are you even doing? Please calm down! This is not ok. I want to go home. I can totally stand, sure. Ok I totally can’t. Wow that ECG is very different. Crap. 

But anyway the point was the uni are actually being super amazing about everything. They had to ask if I was safe to be there and safe to study and if I wanted to interrupt my studies, but this time my actual school of the university turned around and instead of piling on the pressure, the director of taught programmes told me that I do have extenuating circumstances, I’m entitled to them, and that I don’t need to be a hero and show up to everything. Finally, they have the compassion to say that if I don’t feel well, that’s fine, that there are things that can be done to salvage situations that may arise from me missing too much. I didn’t walk home that day. I flew. I smiled genuinely for the first time this year. And uni work has a purpose again, now that there is no axe over my head, no risk of being kicked out.

My dog has been horrendously unwell (giant abscess in his mouth, vomiting & its friend from the other end, seizures, lethargy, suspicious mole, severe hip pain that sometimes leaves him unable to move, passing blood from both ends of his GI tract…) so we are all sort of starting to think about a world without my furry rock. And right now I don’t know how that world could ever have me in it, because without this dog over the past 4 months, I’d have done things. When you look at a fresh box of tablets and go as far as to reach for them, and a cold wet nose nudges your hand, and soft brown eyes stare up at you as a tail hopefully thumps away, it drags you back to earth. When you have nightmares or insomnia that leads to 1 hour of sleep a night, cuddling, and even crying into the fur of a labrador at 3am when your mind is dragging you to the afterlife, sort of anchors you to existence. He gives me purpose. He loves me in ways I do not deserve at all but no matter how many times I push him away or withdraw, he silently curls up on my lap, nuzzles under my chin, and goes to sleep looking so contented I cannot remove myself from his life. He’s my companion. He’s the only thing on the entire planet (apart from my counsellor) who sees me. The true me. And I can’t think why he loves that person, or why I am the only person he wants to be around right now, but that fights with my low self esteem and self hatred. And something has to.

Over the past two days I finally think I may be almost at the point of trying to get a life (I had no idea how frequently the title of this blog was going to be relevant to me). And with the help of a bit of heart surgery (which I am telling myself is going to allow me to run) and support from all levels of my university, maybe I might get there this time. The hope appears briefly and fleetingly, and I will not let myself hold onto it… Yet, it seems to suddenly be dragging me through. Because we all need hope. We all do. We crumble without it. I am too scared to let myself have it and wary of it when it arrives. I know how dangerous it is to give yourself further to fall.

The fact that I am sat here right now is a feat I cannot understand. I am not fixed. My mind is not healed. I still ache to cease existing. I still cannot cope. I still crumble. I am a pathetic being I do not recognise. I am foreign, even to myself. But finally, I am sat amidst what remains of my mind with some sutures – no idea if what I’m doing is effective or how long it will hold, but finally an intention where there has been the absence of anything close to an intention for months.

And I’ll say no more about where I am than that.

I am really struggling to share this. Not because of what it says, but because of what people can or may do with it – take chunks of it and post them without acknowledging their original source, take my words and publish them as their own… For some reason, that just makes me feel used lately. Violated, even. This blog therefore stopped being therapeutic and an attempt for me to try and process the easier things to talk about, and became a source of… Distress. For that reason, I probably won’t post for a little while. I am healing. And that takes time. I’ve given up everything non-essential to focus on the things that are. It’s removed a lot of damaging things that once seemed great to me. That includes social media, blogging, and writing. Maybe all of that will return. I guess here I am again, testing the water that burned me. Hoping this time it has cooled. Thank you so much for reading and following and commenting and liking – that goes a long, long way for me in terms of fighting against my low self esteem/ self loathing, and it means more to me than I could put into words. Over the past few months, those follows and likes and comments and views have also picked me up a little on occasion, so… Pat yourselves on the back. I’m always a little bit anxious that I’m going to wake up one day and you’ll all have retracted your likes and follows having decided that this blog is too poorly written or boring or repetitive to be worth your time. But so far that hasn’t happened, and you’ve done more for me than you know, without even realising. You pulled me back to earth a little bit, each and every one of you.

Edit: You’re doing it again now.