I Realise Now

On Thursday night I had no idea how to face the minor surgery I was about to have, but reached a point where emotion surrendered to logic and the rest of me surrendered to defeat. I lost myself in the sound of my favourite music, and hoped it would hold “the feels” at bay until I was beyond the point of no return. This plan worked. I sat outside the room full of lights and equipment (and people) in which I was about to have a wound in my chest sliced back open, and it was only then that I again to tremble – maybe with fear, maybe because I was freezing, probably a bit of both. 

The team were lovely, as was the consultant carrying out the procedure who to my surprise despite being the clinical director was not above wheeling a bed. And then I was away with the fairies. Pedro the pacemaker was infected, and also I was a little allergic to him (my immune system pretty much just hated his presence, not that it ever really brought out the big guns and saved my butt). He was removed, along with the (also infected) wire leading into Skippy (my heart) via which the sensible robot and the rebellious organ communicated. It couldn’t have waited. It wouldn’t have got better and neither would I. It saved my heart. 

And then Skippy saved himself. The part of a heart that usually tells it to beat is dead and gone in Skippy – too damaged by the colleague of the consultant who carried out this procedure to function again. So, obviously, Skippy had needed Pedro. But Skippy had also decided that Pedro was a control freak and he refused to listen. There had been teething problems as the two of them fought and Skippy won. Without Pedro pacing over the top of a rhythm which Skippy has not yet worked out how to co-ordinate with my blood pressure, my heart rate still stayed within a normal range (even though my blood pressure has not). They had expected to have to need temporary pacing or something to achieve this (and then wait 10-14 days and take me back to put in another Pedro), but Skippy held his own. 

How? For those of you who know about the anatomy of a heart, my AV node is a BOSS and has stepped up to the job. For those of you who have no idea what that means: another part of my heart has started telling it to beat – not normally its job, but something it is sometimes capable of when the heart is forced to adapt. The resulting rhythm is called a junctional rhythm. Because the heart beat starts from lower down in the heart than it normally should, the impulse that triggers contraction travels backwards through the top half of my heart. This means that a tiny part of my ECG trace will forever be upside down, and that sometimes my ventricles beat before my atria, which makes my blood pressure drop because that isn’t supposed to happen. 

I’m pretty unwell with it – I’m tired and my blood pressure is low, plus I have very frequent palpitations. They put out a crash call earlier because a nursing assistant and I went to meet the consultant who saved my heart’s butt (he wanted me to try and walk and see what happened, and to encourage me gave me a goal of meeting him by the fountain – but there was an emergency so he was busy giving someone else a pacemaker) and on the way back Skippy got confused as to how to maintain my blood pressure and I passed out. I’d been dizzy the entire time I was walking, but hadn’t expected to hit the floor. I was mortified, and soooo many people appeared from everywhere to scrape me up off the floor. My PICC line was unimpressed at being pulled and appeared to have split, and I was frightened it meant I’d have to stay longer and also totally beaten, so I cried. I wanted to go. 

We hope Skippy will stabilise and that this will stop happening, but there is a chance that my AV node may remember that this isn’t its job, get sick of being criticised all the time, and demote itself to its previous position of just passing on the message when something else tells my heart to beat. If that happens, I’ll need another Pedro (when I was high, I made the consultant bring Pedro 1 back to the ward with me in his pocket so I could take a photo before he was last destroyed as infectious waste). 

Apparently while I was high I also said some very nice things about this hospital and told them about my grand plan to raise money for charity (which you don’t know about yet but has since been greatly encouraged by the consultant who removed Pedro). I said many more really weird things, promised everyone chocolates (I did deliver on this promise) and apparently came back to the ward absolutely fascinated by my left hand. 

I guess I’m struggling with the fact that I felt so much more well before Pedro was removed, and that this junctional rhythm kind of has me on my knees. I don’t think my body was anywhere near prepared to deal with a heart rate of 52-54, and when I try to walk around while my heart is at that speed everything goes black. When it’s around 70 or faster (which is probably 50% of the time), it feels like Skippy is a galloping horse because the rest of me isn’t quite used to a junctional rhythm. But the consultant who took Pedro out is hopeful that this is a manageable situation and reluctant to put in anew pacemaker. It could take a few months to stabilise, or it could get worse, but the amazing news is that he’s so hopeful about the situation that we are taking me off all of the IVs tomorrow and they are finally letting me home (they were pretty insistent about one more night and asked me to please not run off – last night I was so desperate I looked up local places to stay within my budget and only didn’t leave because I couldn’t walk). 

This means I can fly to Thailand with my family on Saturday to meet my baby cousin again and see my uncle and aunt and their other children and my granddad. IT ALSO MEANS I GET TO SEE MY DOG. Labrador cuddles will heal all.

I hope sometime soon I feel as well as I did when Pedro was in charge. No more surgeries. No more admissions. I have made the decision that I cannot deal with this emotionally any more and that it is kinder to my mind to let nature do whatever it wishes should things get worse again – it’ll win in the end anyway and I cannot find any way to justify putting myself through this again. It has pushed me to places within myself that made me long for death, cry for it, and cry because I didn’t really want to die, just to escape the situation. This has been so mentally traumatic that I know after I leave it’ll be a long time before I voluntarily admit myself to hospital or enter a hospital ward (at least while conscious). Fear is a dominating thing and mine has been reinforced. I always react to the biggest fear, and right now my fear of being here is greater than my fear of what may happen if I am not. It will take a long time for those tables to turn. 

I have faith in the consultant who took out Pedro, and he has a lot of experience. I have raised my concerns multiple times and he has assured me that this situation is not concerning from a numbers point of view. If anything goes wrong, it’s on their heads, not mine. I’ve questioned, I’ve pointed out, and every part of me hopes these guys are right.

If they aren’t, I hope Skippy at least has the decency to completely stop next time. It’d be kinder. If I was a dog someone would already have helped him along on his way to stopping. 

I felt so well and now there are so many positives but I pass out when I walk around. It feels like two steps forward, one step back. But it’s still the right direction. 

I am beyond caring what happens. I cannot care because if I do I’ll immediately cry. Everyone here says I look so much happier, and it’s simply because I cannot let myself feel anything. The absence of my overwhelming despair is mistaken for happiness. It just means I am hollow, so broken I cannot hold any emotion, so fragile I cannot withstand its weight. I hope it works out, of course I do. But I’m not afraid to die. As long as the awfulness ends… I’ll take it. I can’t do this any more. And if the awfulness isn’t awful enough to kill me, I don’t let it put me in a hospital. 

I react to the biggest fear.

And I’m no longer afraid to die.

This is going to be… a car crash. 

What is the point? It all goes belly up in the end so why not dance in the flames? Feeling like this honestly what is the point? I’ll dance until these flames take all I have. I realise now that there’s no hope – nobody will ever get me back to how I felt with Pedro present. This fire isn’t big enough to warrant the attention of the fire brigade or the use of a fire engine and yet it hurts and… I… I have to throw myself into it and embrace it because it’s part of me now. This unpleasantness is fuelled by my body, comes from within it, and it won’t stop until my body does. I know that now. I know. 

I’ve accepted that fact but… I don’t know how to face it. I am already more ash than human. I feel like one of those charred corpses left after Pompeii.

Trust the fire not the fire brigade” – Nihils, Help Our Souls



Please get a grip Skippy, there’s no more anyone will or can do for you right now. I took you to a Bastille gig. How did we end up here?

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I Don’t Know How

I am currently wearing a hospital gown (something I avoid at all costs because it makes me feel like a patient instead of a human being) having consented to the procedure I don’t know how to face. My veins are filled with EVIL IN IV FORM (so soon I’ll feel like death warmed up) and I’m waiting to be called to theatre. The clinical director is going to slice open my chest. Just your casual Thursday afternoon then.

What changed? I don’t know. After my last post I spoke to one of my best friends, and then my mum, and then I broke down to a level that was alarming. Never in my whole life have I cried like I did then. It took over almost like a physical thing and I couldn’t stop. I felt such an intense despair that I didn’t know how to human. But maybe when you sink far enough, you hit the seabed and find your feet again, lower than before but no longer sinking. I put in my headphones and listened because I didn’t know what else to do. Various artists played through my headphones, and the sound was kind of soothing; but then we hit the Bastille section of “perfection in a playlist” and I just… stopped. Everything stopped actually. I stopped melting down and felt the deadness settle in place of the despair. Utterly defeated, totally drained, nothing left to give and no me left in my brain but no longer bursting and breaking under a helpless and alarmed despair. This situation was more manageable, less distressing… and it allowed logic to prevail.

My nurse walked in as I sat there completely drained, and with Bastille still playing, I took a deep breath and (while kind of wincing) I hesitantly told him I’d go ahead with the procedure. Because I want to. Because I need to. I don’t know how to face it, but we all want it to happen. He smiled and gently asked if I’d let him give me EVIL IN IV FORM and in my moment of defeat I also agreed. A doctor walked in to take bloods. I sank inside but hid a headphone in one ear and played Pompeii on repeat. I’m not sure why that haunting song is so powerful, but I’m not going to question its effect on me. It helped. I sank inside. I held back tears, and I clung to those lyrics. This whole situation is an endless cycle, a stagnant disaster. Nothing is changing. We aren’t winning. The lyrics fitted that.

The doctor who came to consent me was not optimistic at all. He seemed to expect them to find the worst case scenario (because that’s the way things look), and explained that the decision to go ahead with this had not been made lightly and without the whole thing taking place ultimately I could end up dead. Luckily logic was still in charge, even though I crumbled inside and my brain tried to curl up and hide and it was far, far too much to deal with. 

He started explaining that they’d had a meeting and a few procudures had been cancelled so they could fit me in. I left my brain switched off, stayed dead inside to stop the tears that welled in my eyes from falling, focussed on the Bastille t-shirt at the end of my bed (it comes with me on every admission because I’ve decided that thing may have magical powers and actually I just love the artwork on it because it’s an awesome parrot design), didn’t let the whole “we may make a hole in your lung or your heart” talk freak me out, and only looked up to sign on a dotted line. 

I’m not doing this for me, I’m doing it for my family and friends and for the people who I may be able to help by being well enough to carry out my plans to raise money for charity. I don’t know how I’m going to do this. I’m terrified. When I wake up I’m going to be in pain all over again and mentally I don’t know how to face the impact that has on my mind. I don’t know how to face putting my life in their hands and being unable to control what they do. 

I don’t know how I’m doing this, I feel the same way as before but it’s suppressed right now. And I just need to get through, for everyone else. 

The situation with my physical health is like a boulder rolling down a hill behind me. It’s gathering speed, it’s going to flatten me. I can’t jump out of the way and my brain’s reaction seems to have been to curl up in a ball and dig a hole in hopes of being less flattened by what is about to happen. But for some reason right now, and I’ve no idea how, it values the people that care about it (and the people it could raise money to help) enough to get up and run for my life, to make efforts to prevent the worst case scenario from occurring. Who knows if we’ll be fast enough? But these doctors are doing their best. They have thrown everything at that boulder to try and smash it, thrown me lifelines that snap as soon as they begin to pull, and after today I may or may not have to have a general anaesthetic in a week or two in which they’ll try to break the boulder again. We’ll know for sure after this little procedure. 

My brain has stopped trying to pedal its way through and abandoned the bike with the slipping chain. It’s running. It’s letting these people fight for it and surrendering itself to the unpleasantness that it knows will leave me mentally spent. It’s running on broken legs, but it’s running.  I don’t know how.

And I don’t need to. I just need to not get caught. One foot in front of the other until the danger passes. And hopefully no more bad news – there’s been too much of that. 

No way but through.

It Shouldn’t Be Impossible… So Why Is It?

I’m not entirely sure how to start this post or how to stop it being a mess of word vomit on your screen, so I will apologise in advance and then… begin.

I fell asleep to the sound of Bastille last night, which means that it’s also what I woke to after a pretty terrifying (and hospital-themed) nightmare. This was a good sound to wake up to, because it instantly pulled me to somewhere safer. I hoped that after some sleep, my mind may be better equipped to fight the fires razing it to the ground; but hope, as I have been taught by experience, is often far above reality. 

The alarming downward spiral my brain hopped on last night was met with an incredible level of kindness and understanding by the staff. Nobody has ever seen me like that – even myself. The fact that it was a thing at all was in itself highly distressing to me. But among all the feels, I found words to describe how overwhelmed I was, and after being told that it was ok and understandable and brave and other such illogical responses, those words eventually filtered through to the next shift of nurses (as did news of my tears). It also reached the doctors. The consultant on the ward this week is also the clinical director. Upon learning of my overwhelmed state and realising (as everyone else already had) that a whole group of doctors walking into my room was going to be way, way too much for me, he wandered in by himself and explained that he thought that would be better. When I was in hospital before, after several doctors did awful and sometimes negligent things which traumatised me and on occasion left me in ICU intubated or almost dead (both physically and eventually emotionally), my paediatrician used to make ward round skip me and walk in alone so I wouldn’t be overwhelmed. My brain isn’t sure how it feels about this parallel. 

He stood at the end of the bed and spoke softly, kindly. Like a human. My brain pedalled desperately in an attempt to seize its opportunity and find its voice, but the chain kept slipping. He confirmed what I was told yesterday – the minor surgery today has to happen. He said I may be here a long while. I tried to process that but still the chain kept slipping. I couldn’t words. I tried not to cry just at his presence and at the same time found a huge amount of comfort in it because it meant a plan and an explanation and… reassurance. 

He asked me if it was ok to go ahead with it, and I said yes. I said yes in a voice that wasn’t mine – it was quiet and montonous and strained and I was dead inside. He asked if today was ok, because it needs to happen as soon as possible. Again, defeated and unable to fight myself, I made what I knew was the right call. I said yes. Because logic is still there. Logic knows that I need this procedure and I need these drugs. It isn’t that I’m not thinking positively or logically. It’s not that any of this is a conscious choice because I’d choose the procedure – I did. 

Consciously I force my thoughts to be positive and logical and do what I know has to happen, but subconsciously this huge tidal wave gathers and swells and sweeps all that away. Consciously thinking things to override feelings all the time is not only ineffective but exhausting. I didn’t have the energy to explain how I felt. The pedals were still slipping and I couldn’t find words and I didn’t have the energy to reawaken my emotions. So I said yes, just like I did with the blood test yesterday (and even though I freaked, logic made me hold my arm steady and let the doctor feel for veins as subconsciously I collapsed – thankfully the latter was obvious and noted via the involuntary expression on my face and change to my body language and voice, and she decided it was too much for me to deal with then). 

He left the room and the chain stopped slipping. My brain pedalled so fast that it swiftly arrived back where it had been the night before, and tears occurred. This was not a good time to need IVs. My nurse walked in, concerned because he had been told about the emotional effects of everything. He told me he couldn’t even imagine what this situation is like, but that tears were very much an understandable part of it and that it made complete sense to him. And then he went to draw up the IV that makes me feel like death. I mean honestly, it makes me feel so unwell I can’t get out of bed, it leaves me unable to look at light and with awful eye and head pain, and my body generally just rebels against it. Physically my current situation isn’t hard, it isn’t unmanageable – I can cope with the pain and all the rest of it. But I cannot cope with the mental impact of all of that, especially not when the awfulness is added to by EVIL IN IV FORM. 

He offered me IV pain medication. Logic told me that was a smart idea because my chest hurts A LOT. But physical pain is something I’m used to, something I can handle, something I can live with (if only the emotions it induces were easier to handle). I wasn’t bothered by the pain. I was dead inside. And I still just couldn’t. That was the first thing I refused. Then two more IVs. Then EVIL IN IV FORM, which I actually need to bully my body into better health. I tried so hard to say yes, I’d sometimes even say it and then something else snaked around my logic and choked the life out of it and I’d just collapse under its weight and sit there torn – silently trying not to let go of the right thing and desperate to be able to go through with it but being pulled back by something raw and animal that I cannot control. 

I honestly don’t think I can do this. I don’t think I can go through with it. 

Writing this has been interrupted by a visit from a diabetes specialist nurse who I can only describe as a LEGEND. He’s awesome and pops in for a catch up when he’s doing the ward rounds because type 1 diabetics are very rare in this hospital (there are currently 1 or 2 of us among a list of patients almost as long as his arm, and the record is 3 type 1s at once). And then the speech and language therapist walked in to discuss the inflammation in my throat and how I’m going to get nutrition when I am unable to swallow any consistency of food or drink due to the after-effects of being intubated (which is why they are reluctant to intubate me for the procedure today). Talk turned to NG tubes and again I know that’s a smart and sensible idea so logic tried to engage, but the pedals in my mind slipped again and it hurt and I was like “I’m so sorry I can’t do this today. I can’t do anything today”. I refused another thing. 

The nurse keeps coming in to give me EVIL IN IV FORM and I literally just cannot even let him prepare it. And I don’t know how to go through with this procedure. It could mean bad news if it goes ahead and I can’t deal with that. I don’t know what’s wrong with me as a human to make me behave this way. I don’t like that I can’t control it and that it speaks over the logic and appreciation that I am consciously and deliberately aware of. Have you ever made the right call and not been able to take it?

They’re pushing me and pushing me to have EVIL IN IV FORM because I need it and it can cause all sorts of problems if I don’t, and they are giving me logical arguments and going on and on like I’m clueless. It’s too much. My brain is making that argument too all by itself, but something else just shouts it down. They don’t appreciate that, they go on an on and I’m so terrified of medical staff because of my PTSD that it feels like bullying even though it’s concern and kindness. They see this situation without any of the emotion, without living through the things I have somehow lived through, and they cannot possibly understand that it isn’t as simple as the black and white scenario they present and push and push. I feel trapped and pressured and even more overwhelmed and so now I’m just sat crying as I write this, wondering what on earth possessed me to post this and feeling the need to apologise for doing so. I feel so helpless. 

I don’t know how to do it. Any of it.

I’m so broken I don’t even want to run away any more. There’s none of me left. They’ve taken it all. I’m gone.

3am Freakout (but it’s… good!)

3am. Wake up hurting. Wake up shaking and sweating and electric with fear. Another nightmare, no doubt about a hospital. Without really thinking, I play Pompeii and breathe a little easier as the sound of Bastille overrides the roar of my panic. What are all these notifications on my phone? The girls from the Bastille gig are freaking out about something. I’m being told to watch something in a separate conversation with one of them (the wonderful human who has travelled all the way from Manchester to see me). My IV pump alarms. I look to find 4 infusion sets snaking downwards and only three pumps. I stumble to the bathroom because the room itself feels way too big to be freaking out in and I don’t want to be anywhere near a hospital bed.

I go back to bed and glance sleepily at my phone. I see a message telling me to “WATCH THIS.” I’m like I’m terrified about tomorrow, I’m so so low, but she’s happy and that’ll make me happy. I expect it to be a YouTube video. And then I open the chat. And now my nurse is all

“How am I going to get you to sleep now?”

“I have never seen you this happy!”

“You’re wired!”

Because my friend, who came all the way from Manchester to visit me and spent the last two days sat in this hospital, went to a gig last night and met DAN SMITH (lead singer of Bastille, the band who make the music that saved all the parts of me that medicine kind of forgot / broke). And she got him to make another video for me (turns out she’s also been tweeting at him to come and visit me, which is just beyond adorable of her). I feel bad because he was just out trying to be a normal human and enjoy some free music, but also… This was SO well timed and as a result of that video, right now I just don’t care about my health situation. The reality that was eating me alive is buried beneath some words from a human who created the music that saved me. Yes, I may be sliced open within the next 12 hours but WHO CARES?! Yes, this situation is terrifying and overwhelming and I cannot deal with it but I DON’T HAVE TO FACE THOSE THOUGHTS RIGHT NOW. They are buried. They are down below rock bottom and I am up in the clouds. Because of a complete stranger with an incredible musical brain.

This is now the talk of the ward. I have been so sad that my consultant came in on his day off. I have been breaking to the point that everyone else was breaking with me. And when I saw that video (which started with my friend and then suddenly Dan Smith was on my phone screen and my sleepy brain took a while to acknowledge that he’d just said my name) I was so happy that people came running because they thought something was wrong because I spoke so loudly. 

I am beyond grateful. (My nurse is like “you were finally getting a good night’s sleep and now it’s ruined” but she also appreciates how amazing this is to someone who appreciates the music imagined by that man’s brain). 

Also, I’m smiling. Didn’t think I’d ever do that again. I’m smiling and it’s now past 4am and I just… I feel like I can face today now. I feel like I can face anything as long as this feeling stays, and if it doesn’t I’m just so glad it arrived for a little bit. It’s the break I needed. Bastille – back at it again with the saving me from my own mind.

That is all (please someone freak out with me because THE FEELS).

I am SHOOKETH. I really don’t deserve such incredible friends and such nice things. Life’s been rubbing salt in the wound lately and now I have like… some chips (or fries if you’re American) to sprinkle the salt on – wow I’m sorry for that metaphor I’m too tired to effectively think any more.

GUYS.

A Little Too Much

I’d be lying if I told you I was doing anything other than sitting in a hospital bed crying right now. I don’t know how to do this. I am drained and alone and so, so scared. Another IV has been added to the 6 drugs my new PICC line (Pablo) was already juggling over the course of each day, and the clinical director (who gave permission for my procedure to take place) saw me this morning and expects that on Wednesday I will end up having the wound in my chest cut open back on an operating table (and then still maybe two procedures after that). It should be no big deal. Way more minor than the extreme procedure he approved for me to undergo a couple of weeks ago. So I should be able to shrug it off. But I’m scared.

Fear isn’t something I let find a home in me often, and when it does I usually pile denial on top of it and wait for it to dissipate, but this fear is eating me alive. There is more than one health hiccup that could go very wrong here. Three different specialties came to see me today alone (as did an amazing friend who I met at the Bastille gig in May, who travelled all the way from Manchester to London to spend the day distracting my brain and quite honestly made my week). Things are complicated. There are too many things to consider and be worried about and too many thoughts to try and queue and process. So the fear hits all at once in a big jumble that I can’t untangle and streamline and sort because there are too many things to be scared about and all of them are justified. 

Among all of that, I smell that hospital smell and PTSD throws in a flashback or two and pure, raw terror tears through me like wildfire. In its place seeps a fear for my wellbeing, a fear that we aren’t winning this yet despite throwing rather a lot at the situation; a fear that things seem actually to slowly be getting worse after an initial halt in the course of things… and then maybe a sound or a different smell will trigger another flashback, and I’m curled in a ball trembling and sweating and scared like I didn’t think was possible all over again, until the other fear seeps back in. 

And I’d be lying if I wasn’t crying because just now my brain thought about the possibilities of how long this could last and what could occur and said to my body “Hurry up. Please just hurry up. Enough. Too much. Just do it already.” 

I’d be lying if I told you that the fear wasn’t eating me alive, and that there weren’t so many elements to it I didn’t even know which parts of it to focus on to start trying to manage it. 

Being here in itself shakes me to the core, turns my world upside down. Too much has happened to me in hospitals. Mistakes have nearly killed me too many times. Mistakes have resulted in emergency surgeries that went wrong and left me able to feel every cut for a very brief period of time. I have been bullied and belittled and neglected by staff. I have been legally assaulted by a paediatrician. I have been traumatised during hospital stays on children’s wards and in a children’s hospital in ways it is too painful for me to even talk about, and I carry that always. It causes nightmares, flashbacks – great big terrifying obvious things that leave me helpless to my own terror… but it burrows deeper than that, it affects me far more than even I comprehend. It also means my brain finds danger everywhere – in every word or act of concern, in every “I care” or “I want to help you”, in every medical professional, in every hospital, in every element of any thing that helps and heals. Because those are the things that broke me, that hurt me, that killed me inside and left this version of me behind. So I cannot trust these people with my life because people just like them almost took it from me (these people are lovely, but PTSD overrides logic). And it’s like being trapped in my own mind, in this endless cycle of flashbacks and fear because now I am “with it” and well enough to… lose my mind. 

And maybe that on top of the justified fear makes it harder. Maybe reliving the old things so frequently and vividly that you cannot separate them from the present… doesn’t help things. I want everyone’s concern to die away, I don’t want to be having big serious conversations about infections spreading to heart tissue and blood becoming acidic and leukopaenia and all of that. I don’t want to hear doctors say they are concerned. I don’t want to hear about how completely awful the situation could get (worst case scenarios that are actually plausible SUCK). Because I cannot deal with it. There’s no room. I can’t face reality because I cannot cope with it any more. Too much. I can’t handle this fear and I. Can’t. Run from it. I can’t leave this reality. I’m tied to it (literally, I drag 4 IV pumps around with me everywhere… and a peacock that I made from a glove – his name is Pierre and I made him a nest from a bandana which hangs from my drip stand).

It’s like rapid machine gun fire, but I can’t even finish falling before the next bullet hits or the next specialty walks in with some other different plan that my brain can’t handle right now (and also means that whatever the person before them decided now needs to be changed to avoid y’know… a crisis on top of the current disaster). I know this is super pathetic. I know. I keep being told that this situation warrants tears, but I know beneath my feelings that it could be worse and I hate that I am selfish enough to indulge my own emotion. 

All I can think as I sit here breaking is that I honestly have no idea how to go on, and for that very reason I need to stop other people going through stuff like this. I need to help just one person take just one moment like this out of their life. And so it makes me want to raise money for charity more. Because I have to take this away from someone else. I have to. I can’t stand the thought of anyone else buckling in the way I am right now. I don’t know how to handle the thought of someone else feeling like I do right now – it’s too late to save me from these moments (clearly) but it isn’t for someone, somewhere – and I want to help that someone. 

I’m tired. I hurt. After being intubated for my procedure I still choke on everything I try to swallow. This could be a thousand times worse, and physically it’s the kind of thing I can handle, it’s nowhere near the nastiest things I’ve been through, but… A lot is going on. That doesn’t help things. Mentally… I’m lost. This stuff just isn’t stopping. Right now I need a break from my health hiccups and life is just cranking up the dial. I’m in a specialist heart centre but non-heart factors are ruining things. I honestly honestly do not know how to face tomorrow. And I think my eyes may genuinely just be faulty because the tears will not stop falling.

Here comes the nurse with another IV to start. 

Where I’m At

Those of you who follow this blog will probably have noted that there are certain circumstances which drive me to post:

  • Things are great and I want to share that
  • Things are not great but I’m trying desperately to get a life
  • I need a place to vent 
  • I feel I should let you know I’m still alive
  • I’m in hospital
  • My world is falling apart a little 

You may also have noted that the long pauses in my more recent posts are usually driven by common situations too:

  • My health is so shockingly appalling that blogging is the last thing on my mind and I cannot function enough to read or eat or leave the bed
  • I almost died again
  • My mental health, reliant upon failing physical health, has deteriorated to the point where I am on the verge of a breakdown and possibly considering stupid and drastic actions to end the situation (which usually means ending myself) and the effort of fighting those thoughts consumes me
  • Things have been really really great and I didn’t have time to post 

Take a wild guess as to where I am right now. Almost any of the above would be right, because all of the above statements (except the very last point) are true. I have been awake for half an hour and already cried. I don’t cry, it’s something I hate to let myself do, and yet I also spent an hour last night unravelling and crying uncontrollably (until I remembered that the music of Bastille existed and pulled my thoughts away into their songs).

I had my heart surgery two weeks and two days ago now. It took six and a half hours. It was “extreme” and “challenging” and the people who came to see me afterwards had never seen anything like it before. I woke up happy, and immediately decided I had to raise money for charities that fund research into that area of medicine so that other people could have their lives changed too (and also so that others don’t have to experience the same things I have). And my life did change that day – my cardiologist put the entire world back at my feet. 

I can now walk AND talk. I don’t cough pink froth. I can lay flat, I don’t get breathless at rest or even when I walk. I can walk more than 5 metres without almost passing out. My resting heart rate is HALF of what it was (so FINALLY normal). It’s magic. Pedro the pacemaker is stepping up to the job of telling my heart to beat (the part of Skippy that tells him to beat is now dead). But Skippy, being my heart, is having a few teething problems. My blood pressure drops to 50 systolic and sits there for a couple of hours just because it can. And there’s a post-op infection. So I’m in hospital on a lot of IVs to try and keep me and my other health hiccups stable.

I’m in a specialist heart hospital in London. I’m miles from home and most of my uni friends aren’t in London any more as it is summer. I have nightmares and flashbacks to terrifying and highly traumatic events which occurred in hospitals when I was younger, and then wake up in a hospital bed and struggle even more than usual to persuade my brain that we aren’t in those situations any more. 

I have feared for my life with legitimate reason to, and a few days ago genuinely thought it was “curtains” to the point that I found myself sending final goodbyes to family members and friends because my case was complicated by my blood deciding to become acidic, and nobody knew how to manage the situation. The treatment I am on seems to have stopped working within the last couple of days, and I’m frightened about the severe decline that could happen whenever my body decides it hasn’t messed with me enough yet. I may need two more general anaesthetics in the coming days or weeks to prevent any further decline, and we’re waiting and waiting to see if they can be avoided. They’ve no idea how long I will be here, I just keep being told that it’ll be quite a long while. There is a lot of uncertainty, way too much time to think, a lot of pain, a lot of drugs, and a lot of emotion. And it just won’t stop. There’s no break, no time to get my head around one disaster before another strikes… and no more capacity to cope. I can’t cope any more. And so the tears arrived and I cannot stop them. 

The staff here pretty quickly learned how magical Bastille’s music is to me, and so I am frequently told to listen to it. I play their songs out loud into my hospital room as I sleep, and when I wake shaking and sweating and buzzing with fear, their sounds dampen down the flames in my mind and pull my attention and thoughts somewhere safer. Not many people here had heard of Bastille before I appeared on this ward, but it’s fair to say that they have now been educated, and the band has gained a few fans! 

I found myself in a place where nobody and nothing could reach me last night. For days I had been trying to hold myself together for the sake of those who are justifiably worried about the current state of my health. I know I’m lucky to have had such a chance taken on me and my heart, and I’ve been more focussed on making sure others can have access to that same chance. Last night though, reality became too heavy for me to shield others from the weight that is crushing me. Talking to my mum, I started to cry… and I wiped away the tears but they wouldn’t stop. 

My thoughts jumped into an abyss of uncertainty and hopelessness from which I thought there was no return until my reality changed, and that reality has the potential to become much better or… completely wreck my heart. Until that point, moments like that had fuelled me to want to raise money for charity even more, so that someone else could be spared from such feelings and moments. There was still a slight element of that, but also… I cried until I was too drained to really move. I just could not. And then I played a song. One song. (Pompeii, because it rescued me from an equally uncertain hospital situation the first time I heard it) and I could settle enough then to sleep. I don’t know how music does that, how it runs in to a mind on fire and floods away the flames, but I’m very grateful that artists decide to share it with the world. 

I guess then, the reason that I’m posting is because I don’t know how to do this any more. I am utterly, utterly broken and drained, and there is no break. I’ve been through worse, I’ve been in hospital for years before, it’s just tough to cope with this right now after so much, and even tougher to cope alone and with the trauma of PTSD forcing you to relive the most terrifying and traumatic experiences of your life over and over and over. I don’t know how to do this any more. I honestly don’t know how to be ok. I don’t know how to settle and I don’t know how to stop the tears because even when they don’t physically fall inside of me they’re raining all over the place. 

All I have, in this moment, is a heartbeat and Bastille’s music and… an awful lot of hope. I hope this situation changes. I hope I get the future I want and am able to raise money for the charities I want to help in the way I’ve already been planning. I’ve been too unwell and in pain (and on pain medication, but my body seems to get less high from it now) to post or really contact anyone, but today I just need… I don’t even know. Nothing can help because this is all on my body. And that’s a beast I don’t know how to tame.

I need to save other people from that, from this. I want them to have the chance I have had and I want to erase the fear and the hopelessness from the timelines of their lives by funding research that can help them to have chances like this too (minus all the bad luck afterwards, but hopefully with further research they can stop hearts getting grumpy about such drastic procedures like Skippy has). I am incredibly grateful to my cardiologist (who says this is just a blip). He’s given me a future and an entire life to live… now I just have to take that future back out of the hands of my body. Right now it feels very far away. But I will appreciate every moment of it, every step I take. And more importantly, I will use it to help others. Morally I can’t not try to pass this good on and I have big, big plans (wow I did not expect a positive end to this but clearly part of me is still alive and kicking). I just have to find a way to make it through today. And that… I just don’t know how. 

No way but through.

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).