“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).

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Back At It Again…

The night of the 8th of September. I was laying in bed, pleading with the minutes to pass so that I could take some more medication and attempt to reduce the pain that was keeping  me awake. I got to a stage where I almost didn’t know what to do. I held where it hurt, curled up in a ball, and soon found myself unable to stay still. I had one of those moments where you can’t imagine how pain like that will ever get better, how it will ever go away. I tried to remember what it was like not to hurt, and how it was possible to hurt so much so relentlessly (oh right – because my nerves and blood vessels and a couple other structures had been traumatised by a surgical team).

I have previously mentioned my love of Bastille’s music and the things it has come to mean to me. I discovered their music in the back of an ambulance during the worst night of my teenaged years (well, at the time it occurred it was the toughest I’d faced emotionally up until that point). I leant on their music from that moment onwards, playing it over and over through headphones as I laid in various hospital rooms and wards wondering if I’d ever be free to go back out into any sort of a normal life again; a week before I turned 18, I celebrated getting through it all by seeing Bastille live, and watching them perform the songs that had become as familiar to my eardrums as the heartbeat that fuelled the body they belonged to. When I was in hospital (had just nearly died, and knew I was being let out to imminently end up in the same situation again earlier this summer – just before, a week later, I very, very nearly died while on holiday with my friends) right as I was about to crumble under the futility of carrying on, Good Grief (at the time their newest single) began to play over the ward radio. I heard it for the first time as I walked out of that place, carrying battle scars that nobody could see, and I stopped in the corridor and smiled, wearing a strange relief in place of the tears that had been preparing to storm my cheeks.

When I was in intensive care in Norfolk, and my PTSD was being triggered by the sounds and smells of the hospital environment, leading to terrifying nightmares and flashbacks… An ex-army nurse told me to listen to music. The first proper night of sleep that I got in that/ any hospital (other than when I was unconscious or seriously seriously ill) was thanks to the music of Bastille. When nightmares pulled me away from sleep, I woke to the sound of familiarity playing over fresh terror, and immediately knew things were ok, that I wasn’t where my brain had thought it was. I lost myself in the comfort of those songs instead of drowning in the fear. For the first time, I went right back off to sleep. The panic was calmed almost instantly.

When I sat in Winston the wheelchair outside the exam room earlier this summer, stranded until my friend appeared, and convinced that I’d epically failed my exams, the same old songs provided a welcome distraction. A few weeks ago, when I found out that my consultant wants me to go through hell on earth for one health hiccup (STILL can’t talk about that one, sorry), Bastille (Bad News – an awesomely appropriate song which among others) played in the background as I cried my way through London.

And then, in the first minutes of the 9th of September, it happened again – music (specifically that of Bastille) made things manageable. It comforted me when there wasn’t much else that could.

I laid there, a little dopey from the medication that wasn’t working enough to take away the pain, and then I remembered that the great thing about the 8th of September was that it was going to become the 9th of September. And that meant the release of Bastille’s new album. A few minutes later, midnight happened. I was in a really weird place where the pain was bothering my dopey mind so much that I didn’t know how to relax, which meant that the pain stayed pretty ridiculous, and I stood even less chance of getting to sleep. I was by this point rocking. Just laying there rocking. And then, at 2 minutes past midnight, I hit play (the wifi took a while to decide to work). And the recognisable and distinctive sound of the band who seem to release new music at particularly crappy points in my life (usually when I’m in hospital… seriously it’s SUPER weird) filtered through my ears. I don’t know if it’s possible to be haunted by a song you’ve never heard before. I don’t know how a sound can make you stop dead. But I did.

I uncurled from the little knot of pain I had curled up into, my furrowed brow became smooth again, and I went limp as I relaxed for the first time since I’d been dragged from sleep by the pain. I hurt, but I was separate from the hurting because I was focussed entirely on something else. I’d never heard most of the songs, so I listened intently to every word, and managed to somehow zone out and detach myself from… myself. My mind latched onto some of the lyrics and buried them away within its thoughts, taking comfort in lyrics that were written about entirely different situations to the ones which it related them to. And everything was just ok. For 45 minutes I just laid there, completely still, no tension in my muscles, finally able to close my eyes. And then when the music stopped, the pain was still there, but I was calm enough to figure out how to sleep with it.

I now know most of the lyrics to pretty much all of the songs on that album. Until yesterday I listened to nothing else. I even played it to next door’s chickens (I had to look after their animals the other evening). In a weird way it made the pain worth it, because yes the pain sucked but hey, here was some more music that not only sounded awesome to my brain, but also struck a chord with it with a few songs that said things I’d felt (at my health, at other people, at my doctors, at myself, at the world, at the people who bullied me through school…) or that my brain could twist into fitting situations it was familiar with.

I live in Mile End. Well I do when I’m at uni. It is home to me. Mile End isn’t too far from Brick Lane (actually a short walk from where some of my lectures are). In fact, they share the same E1 postcode. Tonight Bastille announced that there’s a free “popup event” going on at Brick Lane tomorrow between 2 and 8pm, presumably involving… Bastille… I spent my entire day today (once I was awake and had got on top of my pain) piling up the stuff I need to take back to London when I move into my new accommodation on Saturday. I didn’t think I could want to be in London any more than I did after seeing all my stuff waiting there ready to go back, and then suddenly there it was. I would catch the train and go to London, but my mum and I are going away together tomorrow for a two night spa break near BIRMINGHAM. OF ALL THE DAYS FOR BASTILLE TO HAVE A POPUP EVENT it’s the one time in the next few MONTHS that I can’t be there. I hoped to get tickets to see them at the O2 arena in November but they are far too expensive for me to afford. It’s weird to think about how many times I’ve nearly died, and all the stuff I’ve been through with their music playing in my ears.

For me, my love of this band is all about their music. I’m not the type of person to obsess over band members and talk about them as if I know them – to me that feels really weird to do when I’ve never even spoken to a person and therefore have no idea what they are like. I kind of think the way an artist/ band should be judged is by their music. I base my respect for them upon that. And in a weird way, I have a lot of gratitude as well. Because honestly, it sounds so pathetic to say, but I don’t know what I’d have done if that song hadn’t played in the back of that ambulance, if the ward radio hadn’t played that song as I was about to break down, if through the recent toughest moments of my life that music hadn’t been there… Well, I don’t know what I would have done, but I do know what I would have been aiming for, and what the end result would have been. So I kind of don’t need to see Bastille live, because their music already gave my soul a little bit of life.

Music is there when people aren’t.

It is also there when I don’t want to be.

It is a more helpful medicine to my mind than laughter will ever be (not quite as helpful as running again will be, but hey). I was, as you can see, very recently reminded just how awesome music can be (Julien Solomita vlogs also entertained me for hours over the last week, and have been pretty important over the last year especially, but they shall get a post another day – unfortunately you may have to endure reading about that too).

For now, no way but tunes (yes I actually just typed the words no way but tunes. I am actually cringing at my screen right now. What is my brain even doing? Sorry for this post)

Scarily Relevant 

I run to the morning

As the nightmares chase to haunt me

Should I make a stand?

I walk in the shadows 

Cause I’m scared of what the light shows

Is there power in these hands?

I feel like a wasted soul

A hologram of skin and bone 

Chorus:

This is the time

You know that it’s right

Cause I’m letting go

In love and in life

There’s not turning back

Cause I’m letting go

There’s pain in the falling

The landing hits you without warning

At least you’re at the start 

There’s fear in the climbing

Sometimes the voices will be blinding

But they’ll never have your heart

To ride the highs you need the lows

It puts the flesh back to your bones

(Chorus)

Before the sun is set

Time to forgive, forget

Whatever happens happens

But it ain’t happened yet

(Chorus)

Just give me time to wake up, just give me time to wake up, and go.

...”

– Saint Raymond, Letting Go.

My phone spat this song at me just now. This is the soundtrack to the last year of my life. Some of these lyrics were quoted, written in post-it notes, and put up on my notice board in halls. Through that whole first year of climbing when everybody expected me to fall and left me unsupported, swimming against the tide of university, I had this song. When everything fell away and I doubted myself, these words were the hope my mind could not generate. This song was my voice of reason. It reminds me of walking to lectures in the morning, amidst Bastille and Imagine Dragons and X Ambassadors and The Clash and The 1975 (etc. etc.). This song was there when the aching despair of the situation was almost unbearable. It was there when I was empty and it was there when I could see no way. And it reminded me that there was no way but through. It pushed me on over and over and over, and right when negativity reared its ugly head again in this ICU just now, it pushed me right through it once more. 

So many of these lyrics have resonated with me at so many different times. Running from the nightmares PTSD triggers, feeling like a wasted soul, the blinding voices of university staff pushing me to drop out and retry next year (I am still freaking about university and my grades and impending August re-sits/ first-sits. How messed up is that? I am feeling the pressure. I can still hear the conversation that tore it all apart)… Riding highs. (And the lows really do make the highs so much higher because you’re so much further above where you were – it’s all relative…) Even the idea that if this goes belly up then it does but for now I am alive, that whatever is going to happen will happen but for now all is good… It’s all in that song.
Another song I fell in love with (scarily relevant at times) has the lyrics,

“Heart don’t fail me now

We’re all fighting in the battle of the lost and found

Heart beating in my chest, don’t fail me now, don’t fail me now

Feet standing in the edge, don’t fail me now don’t fail me now

Will I find the courage to do this alone

Embrace the darkness, jump into the unknown?

Fighting with the voices in my head

Telling me that I should take a break

But I know if I slow then I won’t get up again

So I keep rising up from hidden depths.” – Saint Raymond, Don’t Fail Me Now

The 1975: Properly Alive

The day before my 20th birthday. I’d been in the critical care unit for about a week. In resus all those days before, I’d thought I was going to die (a month before I’d been told that I wouldn’t survive that situation again, and here it was). I hadn’t even the energy to breathe in the end. I’d woken up to be told that they’d tried to get me off the 6-7 IVs I was attached to, and that my body had essentially thrown itself off a cliff again. My consultant in that hospital had been round to see me. He wasn’t willing to try anything different (yeah, that one. The one who last week realised how stupid that was and now thinks I am worth some sort of attempt to save my life, via ‘drastic’ solutions) and had predicted that another brush with the grim reaper was coming. My heart sank when he left, because I knew he was just leaving me until this happened again, until the time where some miracle didn’t occur and all of the worst fears/ expectations that had been planted in my head by various doctors, became a reality. When this had happened the time before (a month ago) I had been told,

“I don’t know how you made it through this time, but you aren’t going to survive this again. Most people would have lost this fight a while ago. Your body can’t deal with it. You need to ask your consultant to help you, this isn’t good enough, it’s appalling and if he leaves you, you are going to leave all of us very soon. Fight him, if you have to.” But he was stronger than me. He didn’t seem to think there was any point in trying to change the future. He had left me for it to happen again, and it had. And now, because he still wouldn’t try, it was going to again.

“I don’t think you understand how serious this was, IS. Is he doing anything? No?” A flash of frustration flitted across the doctor’s face as I shook my head, “We cannot keep picking up the pieces of his ignorance. You can’t keep ending up in intensive care, this isn’t a life, this isn’t something you will keep surviving you little superhuman, I’m astounded that you already have. Your poor body… You poor thing… I’m so… Sorry.” He relaxed clenched fists and rested a hand on my shoulder. I was, in his eyes, simply waiting for the end. All because the person who could change the outcome didn’t see any point in trying harder to do so. I was not worth trying for in the eyes of somebody paid to try. That made me feel less than worthless.

I looked at the arterial line in my right arm, and decided that was a quick and relatively painless way to allow myself to bleed to death. The hopelessness was crippling. I was tired of waiting, scared of the thoughts it gave me time to think, the future it gave me time to mourn. But uni dad gave the impression that he cared and I had to cut him loose before I could bring myself to do it. I tried to. He wouldn’t budge. He wouldn’t stop caring and he guilt tripped me out of it, for which I temporarily but completely hated him (and later felt an overwhelming gratitude towards him for).

In less than 12 hours, I would have made it to an age we didn’t think I would. I had only got to my feet the day before, and was still trying to figure out the art of walking. I was also due to be going to see The 1975  in concert that night with future flatmate.

I managed to persuade the doctors not to move me to a ward (I didn’t want to be in hospital for my birthday), and at about 8:30pm, I left not only the critical care unit, but the entire hospital (the doctor seemed to look like he regretted his decision when I zig-zagged into a wall and my feet decided to function seemingly independently of my brain). Shakily (and in the pouring rain) I walked to the bus stop in front of the HUGE blue building I had almost died in, and went back to campus to put on normal human clothes. Under an hour later, I was in Brixton. We walked into the venue just as The 1975 came on stage. The music was all I could hear. There were no seats left, so I held myself up by leaning against a wall, and the whole time I just smiled as wave after wave of… Relief. Washed over me.

It was all worth it for this. I made it to 20! They told me I wouldn’t and I am actually going to make it to 20! I was on a critical care unit less than two hours ago, they told me not to do anything stupid and not to come here – this is very stupid, but doing the wrong thing feels electrifying and I wouldn’t miss this for the world! I’m alive… How am I alive? I shouldn’t be alive. They told me I shouldn’t be alive… And yet… I am very much alive. I’m in heaven. This has to be heaven. This music, this atmosphere… It’s just… I can’t even… Heaven. Was pretty much what I thought over and over as songs I knew and songs that were on their upcoming album drifted into my ears.

I cannot describe the feeling of pure joy. Everything that moment represented, suddenly back in the real world, free (still have no idea how I managed to actually walk, but that was also a major achievement). What a way to celebrate being alive, what a way to celebrate leaving hospital, what a way to celebrate beating death and defying overwhelming odds again. It was all ok. It was all going to be ok. I forgot everything. I forgot to be worried about how uni would react if they found out, I forgot to be worried about how long I might have left before death called my card again, I forgot the effect I was having on everyone who even slightly cared about me… I was just me. I lost myself in the music and the lights and I. Was just. Me.

Future flatmate and I got to halls a minute or so before midnight. We just about made it into my flat; I stood there with The 1975 playing through a single headphone and nearly cried as she wished me happy birthday. It was a day that a month before I never thought I would see. It meant more to me than any other day ever has. I had proved everyone wrong (apart from uni dad, who all along told me that the situation was utterly crap, and nothing else mattered now, but that I should wait until my birthday because he was confident I would make it). I fell asleep to the sound of The 1975. I let a couple of other bands join the celebratory playlist. I woke up and opened a card or two to the sound of the 1975 in this bubble of wonder and disbelief. I went to my tutorial the next morning wearing the band t-shirt I had bought the night before.

Their music chills me out, it makes me want to dance, and now, it means that everything is ok. It is my you beat the odds music, my they were wrong music, my the world can just get lost because you are a little bit superhuman and you will get through this music… My you are alive music. And not just existing, properly alive.

They said I wouldn’t make it, but here I am months and many brushes with death later!

(I am sorry for the five posts in one day. This was a series of posts about music important to me, and I was too impatient not to publish them all a few hours apart. It isn’t usual for me, and I hope it won’t happen again! It was important to share the music that got me through, and actually kind of fun. I haven’t said anything about Pink Floyd etc. But this is quite enough for one day. And I am confident that I will have many more!)

Lauren Aquilina: Getting A Grip

It was 2012. I’d been in hospital for a year. It was Christmas. I was waiting to be transferred to London, but it had snowed for a couple of weeks, and even the ambulances outside the window were getting stuck. My friend in the bed next to mine and I (we were the only two in the bay, but had pulled the curtains across in front of our beds and broken the one in between it to make out own private room, and put christmas decorations EVERYWHERE) had gone for a late night walk, as we often did. We dragged my drip stand all the way to the main entrance, and we sat on the information desk because the whole place was dead. We looked in front of us and saw a christmas tree. It was christmas eve and apart from that single tree you wouldn’t have known it was Christmas anywhere other than the children’s ward we were living on.

We both burst into tears. We sat there, and we talked about how it didn’t feel like christmas and how badly we wanted to be with our families, and we just cried. Uncle security guard (a completely awesome security guard who would sit in my room and talk to me for ages, turned out to be a family friend, and made me his honorary niece because he really is like an uncle to me and he picked my mood up off of the floor a lot and really motivated me and encouraged me long after that admission ended) found us both, and gave me a bar of chocolate he’d been on his way to deliver, to cheer me up.

My friend and I went back to the ward. We played a game of pool, and then she smashed up the games room because she was so upset, throwing the pool balls everywhere. The nurses understood, they left her be; our favourite nurse found us and hugged us both and we cried into her uniform as she tucked us under her arms like we were ducklings. My friend got into bed and I laid there watching as she cried herself to sleep, occasionally managing to make her laugh before we both broke down again. We had the games console in our little den with us (part of a TV unit provided by the amazing charity Starlight which provides things and experiences for sick children in and out of hospital) but it didn’t help. We wanted to be home and we missed our families and the outside world more than ever (she’d only been there a couple of weeks, and it looked like she would be let out within the next couple of days). Christmas made it so much more difficult to be where we were and we just couldn’t contain our emotion any more. I curled up myself with one of the cuddly toys that one of my favourite nurses had given me, and decided music might help, seeing as sleep wouldn’t take me away from reality.

“You’re alone, you’re on your own. So what? Have you gone blind? Have you forgotten what you have and what is yours? Glass half empty, glass half full – well either way you won’t be going thirsty. Count your blessings, not your flaws.

You’ve got it all, you lost your mind in the sound, there’s so much more, yo can reclaim your crown. You’re in control, rid of the monsters inside your head. Put all your faults to bed. You can be king again.” – Lauren Aquilina, King

I found that song, and those words made me get a grip. I took comfort in them, I downloaded the song, put it on repeat, tried to forget that it was Christmas eve, and went to sleep with my IV pumps whirring gently next to me, pushing their cargo into my PICC line.

Every time I had a little bit of a wobble and the overwhelming despair closed in, I played that song, and it pulled me back to reality, forcing me to accept how lucky I actually was and get a grip. The person who had written and recorded that song (Lauren Aquilina) was about a year older than me, and she had such a great attitude, so I felt I had no right other than to live by the mentality she taught with that song. Also, I found it inspiring, that someone so close in age to me could achieve such awesome things. I didn’t want to do awesome things, I did’t even want rid of my PICC line, I just wanted to raise money for charity and possibly become a doctor or an author or an artist (I was young, I wanted to be many unachievable things, clearly… Although I’m not so far from a few of them now), and Lauren Aquilina made that feel achievable.

I was terrified about going to London, as the last time I’d been to the specialist children’s hospital attached to the hospital I was due to return to, I’d ended up on a ventilator in the paediatric intensive care unit, had to have emergency surgery because of a staff error, and pulled out my own breathing tube in the PICU before they’d had time to deflate the balloon thing that kept it in place, which had annoyed my trachea and made me make an awful sound every time I inhaled (and almost meant they had to put me back into a medically induced come and intubate me again to give me time to recover). I was terrified, but three weeks later in the ambulance that took me there, with one of the many nurses I looked at as an extra mum, and a paramedic who knew my aunt (who is also a paramedic, and would abandon her patients in the middle of the corridor and run at me and my drip stand to give me a hug if she bumped into me at the hospital), I listened to that song over and over (along with a bit of Imagine Dragons) until I got a grip again. It was after that awful, awful, highly traumatic admission, that I discovered “Pompeii” by Bastille on my journey back to my local hospital.

Imagine Dragons: Another Missed Concert & Meeting My Uni Parents

I’d been looking forward to it since my birthday in March. I’d just been moved out of my flat in halls for a couple of weeks so they could get rid of a bug infestation that had been present in our flat, and the thought of an upcoming concert was pretty much my saving grace in a messy situation. I woke up early that morning and got on the tube to Warren Street to go to a hospital appointment with the consultant who had genuinely changed my life. Things were far from great. She wanted to admit me; I didn’t want a hospital stay, so I declined and we said we’d talk about it again at my next appointment in a couple of weeks, and that the offer was still open if I decided to change my mind. It was bonfire night, the day on which, as a toddler, I had been diagnosed with diabetes. A concert was necessary. I felt incredibly unwell, but I had an anatomy practical, and I’d already missed one through a short stay in intensive care a few weeks before.

I hurried back to campus and made it to the practical just as the lecturer running it walked out to call the last few people in. People were later than me, they had the nerve to answer back the scariest lecturer I had ever encountered. I found myself in a room full of cadavers, and went around asking people if there was any room left in their group. Eventually I found a group, and one of the lecturer’s tutees let me join her and a couple of others. She was really nice. We moved around the different benches where each cadaver had different things pinned. We had to build a circulatory system at one point out of aquarium supplies and pipe cleaners I think. I gradually felt worse and worse, and kept being told to sit down. Eventually we sat down to start drawing a very nicely preserved midsection, and I realised I couldn’t get up. Someone kept asking me to get off of the stool so she could sit down and draw, but I’d only just sat down and in the end simply told her that if I stood up I would pass out. We were so irritated that we moved anyway. And then the world turned to a blur and I couldn’t see. I felt like I was going to pass out. I then agreed that I probably should actually leave the room.

I saw a blue blur, which meant I was looking at one of the assessors (they wore blue lab coats. We wore white). I heard a Scottish accent. The lecturer running the practical. Cool. I said his name, but he continued walking. Somehow I made it a few more steps and said his name again. I asked to go outside. The blue blur of the lecturer looked at me and sent one of the assessors out with me – uni mum and I were introduced. A couple of minutes later she walked me back into the room and told him I needed to go to the hospital. The practical ended a little early, and everyone was very annoyed. I stayed sat behind in the room while the lecturer grabbed one of my coursemates and asked her to go with me. He told uni mum he would pay for a taxi, and told her to take me to the hospital. We abandoned that plan when we realised I couldn’t actually walk that far, and he instead told her to take me to the reception of the science building. I made it there (after stopping on the way), sat down, lost the ability to lift my own head, and ended up eventually surrounded by four paramedics. Embarrassing. Blue lights. Resus. No concert – instead I spent the next few hours fighting for my life. The nurse in A&E and one of my friends had been to see Imagine Dragons that night before and both said it was awesome. I just laid there with uni mum (who sat by my side until very late at night when I was stable enough to be moved to a ward, and visited me frequently over the next few weeks).

I was really, really gutted to miss the Imagine Dragons concert. I’d listened to their music for years, through hospital admissions and bullying and attempts to run again. I listened to it a lot over the next few weeks in hospital, as uni mum encouraged me to speak to soon-to-be uni dad, and my university parents slowly but surely persuaded me to trust them. Over the coming few weeks, I nearly died quite a few times.

“I’m just the same as I was, now don’t you understand, I’m never changing who I am…

The path to heaven runs through miles of clouded hell right to the top. Don’t look back.” – Imagine Dragons, It’s Time  (I wished people would realise that through all my health issues I was still the person they knew. I played this song to remind myself to just keep going, that all the bad would lead me to the good and allow me to appreciate it all even more)

My uni parents were there through it all. Uni mum was there on the night I broke down after some disasters on the ward. They were both there when things got scary or when things looked a little bleak. They were there to persuade me to return to hospital when I walked out, and sat in the coffee shop with me and discussed mostly university things when I was freaking out about missing uni work and wanted to get off of the ward. The first time I spoke to uni dad, they ended up reverse kidnapping me in a wheelchair after my body had a funny five minutes by the main entrance, with uni dad telling me that someone who used to be in his tutor group had gone through worse, which was oddly reassuring.

Our discussions went round and round in circles “You aren’t a bother, note how I didn’t ask you, I told you. Don’t worry about work. It will be fine. A bad year for you will be an average year for everyone else. The worst you’re going to get is a 2:1. By they way you got a first in that practical you nearly died in. It’s going to be ok, you have our support. We’ll sort out all the uni stuff. You aren’t going to die. I’m very much looking forward to your graduation.” And through it all, alongside their support and belief in me, one thing was also ever present – the music of Imagine Dragons, which had also got me through lengthy admissions in my earlier teenage years.

Late at night, staring out of the window at my perfect view of the London skyline (a uni parent and I had our own private fireworks display of all the fireworks in London that weekend from that window), wishing the glass I was pressed against would give way and let me fall eleven floors, their music was there. As I looked out of that window at all my classmates walking past the bottom of the hospital to do the the medical school less than a hundred metres away, pleading in my head for just one of them to cross the road and come and visit (which I knew would never happen – “out of sight, out of mind”) I listened to Imagine Dragons.

As I lay surrounded by four of the doctors who were on call in the early hours of the morning because they’d let me slip too far into a medical emergency, and my cannula had gone and they couldn’t get another one in to give me the medication to save my life (and I felt so unwell I didn’t think I would see the morning, and was laying there asking them to help me as their calm expressions gave way to panic)… Imagine Dragons played in my ears. When I was scared that the doctors in that hospital didn’t know what they were doing and were going to leave me to die… Imagine Dragons blasted from my headphones.

When the consultant I almost trusted, who had changed my life and had regular contact with me, handed over my care to the other London hospital I was in (which is much bigger and right near my uni), I lost all hope… To the sound of Imagine Dragons (even though at that point they said it was shared care). As I lay buried under a blanket, cocooned in my emotion, tears streaming down my face… Imagine Dragons, again, filtered into my brain. Through flashbacks and uni work (that I couldn’t forget even though I kept being told to just stop it) and a longing to get out of that hospital, that music was there.

Through the entire summer before, as I made my way to a specialist London hospital of neurology and neuroscience, and the specialist London heart hospital, and met more new consultants… I listened to Imagine Dragons, as I walked through central London streets that soon became familiar, and had numerous investigations carried out to see where we were at. That music is tied to and intertwined with my memories. In a weird way, it saw me through.

“Ever since I could remember, every single part of me just wanted to fit in. I was never one for pretenders, everything I tried to be just wouldn’t settle in. If I told you what I was would you turn your back on me, and if I seem dangerous would you be scared? I get the feeling just because everything I touch isn’t dark enough, that this problem lies in me… I’m taking a stand to escape what’s inside me –  a monster a monster I’ve turned into a monster, a monster a monster and it keeps getting stronger…

I never said that I want this, this burden came to me and it’s made its home inside.” – Imagine Dragons, Monster

“Don’t throw stones at me, don’t tell anybody, trouble finds me. All the noise of this has made me lose my belief…

Had to lose my way to know which road to take, trouble found me. All I looked for was washed away by a wave

I know it’s gotta go like this, I know. Hell will always come before you grow” – Imagine Dragons, Roots

There are so, so many lyrics I want to quote for so, so many reasons. But this posts already double the length it should be, so this will do.

The music of Imagine Dragons has been a constant through the good and the bad, right through my teenage years. It was like an audible comfort blanket for my soul. It was there when nothing else was, when nothing else was willing to be. I ran to these songs, I cried to these songs, and when the time came… I rebuilt my life to these songs.

Hudson Taylor: The Brothers I Almost Died To See

“I was climbing, now I’m falling, I’ve been pushed off by a man who has  made it to the top and now defends it ’cause he can and I have found the breach in his front line

I was open now I’m hidden from the danger of his words, I have found a good position and I’ll play for what he’s worth and he will find nowhere left to hide

I was losing now we’re drawing, I’m not afraid to spill my blood, I’m not backing down so I’d surrender ’cause you should and fact the truth

You raise the flag I’ll tear it down

You may have won the battle but I’ll take the fight to you…Your fear has now come true” – Hudson Taylor, Battles

This song has reminded me of many doctors over the years. And teachers. People who could have helped me and wouldn’t. Most recently, university, and the physical incarnation of my distress there (a person, just to clarify). I’m not sure how I stumbled across the music of Hudson Taylor, but I know it was at a time where I focussed more on the words of a song than the sound of it, and that allowed me to appreciate the magic and connect in ways I may otherwise never have been fortunate enough to do so.

This music came to mean an awful lot to me through periods of isolation and bullying and rumblings in the family jungle. Also through all the hospital admissions and health hiccups I faced through the three years of sixth form (had to redo a year because I missed the entirety of it basically). In… 2014? Or maybe nope, nope… Last year? They had a gig in London. I left school early that day because my heart was being a poop. I wouldn’t let them call my parents or any doctors, I simply went home with my good friend because he had the afternoon off and lived really close (ok not really close but much closer than I did) to the train station. I slept. I got on the train and met up with a friend that I’d met once before at a medicine taster course thing during the summer (we had on that single occasion spent hours and hours sat in a coffee shop and she’d just melted down at me and a bond of steel was forged. Plus we look almost identical, it’s scary).

My heart was doing a bunch of stuff, so we delayed leaving. We walked the entire length of the international train station place to get to the underground station joined to it. My heart was FREAKING OUT. So we turned around and went back. I’m not sure how, but we ended up stood outside a sushi place inside the station. Apparently, I said my heart felt funny, and then “no, REALLY funny…” And then I hit the floor. I’m told I was greyish white, drained of all colour. Two policemen ran over apparently. They grabbed the defibrillator thing and they were awesome and an off-duty doctor guy ran over too. Nobody else stopped. I remember waking up and seeing this bald guy laying on the floor next to me, talking to me in a really soothing voice and trying to reassure me. There was a policeman kneeling next to me on the other side, holding my hand. I still remember his face, actually.

And then I’m told that I held my chest and lost consciousness again, with my eyes open, and they couldn’t find my pulse. My pulse eventually was all irregular and weak (but importantly, PRESENT). Because it still wasn’t getting enough blood, my brain was all let’s have a seizure. And I did. I’m told the policemen kneeling beside me rolled me on my side and pulled me half onto his lap, curled his arms around me, and put his gloves under my head while his colleague cupped his hands under my head to stop it hitting the floor. Other police people had apparently appeared. They laid on me to stop me hurting myself or them while I fitted. They gave me oxygen (I used up an entire bottle because I’m all greedy like that). I came round. Apparently I apologised profusely, removed everything, tried to tell them I was fine, apologised again, said I had to go to a concert, got as far as sitting up… And then my heart rate went really fast but my pulse was at the same time really slow… And it happened all over again. Five times actually, before the chest pain was so bad I gave up.

Every time I woke up, there was this bald guy (who was meant to be on his way home) laying on the floor, just talking to me soothingly like I was a frightened child (much appreciated, he was such a legend). The policeman who had me sort of on his lap kept telling me it was no bother every time I got all panicky and apologised, and kept also talking to me like I was his kid, and moving his thumb round and round in circles my hand (which he was holding).

The paramedics that arrived scooped me off the floor without pausing to do a lot other than hook me up to their ECG. The machine got all stressed out because my heart was all stressed out and was beating extremely fast to try and make up for its inadequacy. I didn’t know who I was, or why I was in London. Just that my chest really hurt and I’d bitten the inside of my lip pretty hard. They said I was their first genuine patient of the night. One of the paramedics lived near my parent’s house in Kent. His daughter had been in hospital a lot, so he understood how scared I was. I kept asking him when the last train home was; he knew I wouldn’t be getting on it but played along to calm me down. When I freaked out in the resus area of A&E, he stood next to the bed to stop me getting off, and just stroked my shoulder a little to chill me out. I couldn’t remember the code for my phone, so I couldn’t unlock it to call my parents (there was shouting down the phone when they eventually called after I didn’t show up on the last train home, their worry went off like an explosion).

This was why I got referred to a specialist at a different London hospital for my heart, so I guess every cloud has a silver lining. But I was so upset about missing the concert. A month and a half later, Hudson Taylor did a small gig on Oxford Street in the store which sold their newly released album. Tickets were free, you had to apply for a pair, and I won some. None of my friends could be bothered to go to London with me to see a band they’d never heard of, so in the end I took my mum (who decided she loves their music). I heard the music I’d walked out of school to before lessons had even started (when you’ve terrified enough teachers with your health, people don’t care when you just walk out, you become invisible, it becomes acceptable because you are unwell and it feels like nobody cares), or locked myself in the bathroom of our house with, or been reassured by. I met the two brothers responsible for that music afterwards, they took a selfie with me. I left with a signed album which had a whole new bunch of their songs, and a weird connection with those songs that I hadn’t expected to make.

“Get me out of this room now, get me out of this world…

And I’d kill to get away, I’d die to make my own way. I’ll lose to celebrate, I’d win to see the good days. I’ll  never stop the fighting, so bring to me your worst. I’ll never stop believing that I could rule the world some day.”Hudson Taylor, Drop Of Smoke

(This is pretty much what my brain thinks when I start to freak out at being in hospital after I’m well enough to relive the trauma of previous stuff).

(I emailed the police at the station to thank them for saving my life, but I never ever found the bald man who laid on the floor and told everyone what to do. I can’t ever thank any of those people enough, and they are my heroes).

There is one particular song that I found especially comforting (ok there are several, but not enough room to quote them all and they were a comfort in situations I can’t disclose here). It said the words I longed to hear from anybody; but until someone was willing to support me, this song just had to do, and I kept hoping that one day someone would be there.

“When you face 28 thousand doorways, or you’re left hoping for an escape… When your day is 24 hours of heartache, well show me the way you break and know that it’s not your fate, not today. 

When the wildfires leave you no way out I’ll scream up to the sky with you. When the wildfires leave you no way out my door is always open to you.

Another day with millions of different people starting to lose their heads, forgetting to be themselves, what else. Do you know you’re someone I want to be with, you’re someone who’s just themselves. You know you can cry for help, I’ll be waiting…” – Hudson Taylor, Wildfires

Bastille: The Music That Showed Me The Power Of Music

I was in the back of an ambulance on my way from a specialist hospital in London to the children’s ward of my local hospital (where I had been living for almost a year). It was dark. Winter. Very late. I had just been told that afternoon that some of the best doctors in this field in the country (who were in charge of my care at the hospital I had just been rescued from) had no idea how to fix the particular health hiccup that was keeping me in hospital, which meant I would be “in hospital indefinitely” on continuous infusions of IVs. I was 16. I was replaying those words over and over in my head, my heart sinking lower each time I did so, my eyes heavy with tears I refused to let fall. I stared into space in the back of that ambulance. And then we passed a cinema, and outside in a huddle, laughing and shouting, was a group of teenagers my age. My heart lurched then. The ambulance man looked at me,

“Do you like the radio?” He asked. I nodded politely. He called to his colleague who was driving, and told him to put on the radio,

“You like Radio 1?” His colleague called back to me. I nodded again. If I opened my mouth I knew I would cry.

He turned on Radio 1. He turned up the volume so loud the whole ambulance vibrated to the beat. We couldn’t even hear each other when we shouted. Couldn’t hear the sirens. I could feel the sound running through me. And then, almost at midnight I think, on came Pompeii. The chanting at the start of that song instantly calmed the emotions rampaging through my brain. I stopped, distracted from my thoughts, and I listened to every single word of that song. It had me from the first line.

“I was left to my own devices | Many days fell away with nothing to show…

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? How am I gonna be an optimist about this?” – Bastille, Pompeii

I had never felt such a connection with a song (even though I think it was actually written about the eruption of Vesuvius and the citizens of Pompeii), because in that minute it did feel like nothing had changed at all, and I had been here before, and I didn’t know how to pull any positives from the situation. I was at breaking point, and just as I let go, that song, those words… Caught me. I didn’t feel alone any more. I wanted to listen to that song over and over again. As soon as it had finished, I found it online and listened to it on repeat. In my hospital room that night, I walked around the room with tears streaming down my face, dragging my IVs around with me, listening to that song over and over and over just to make things feel ok. Eventually, I fell asleep to it. It was all I had, my only companion. I don’t know what I would have done if I hadn’t heard that song. I had no hope left, I was going to give it all up.

I listened to Bastille all the time when I was in hospital (I still do, although now other artists join the playlist). I went through some awful times with their music in my ears, eventually an entire album of it. It was my pre-surgery soundtrack, my post-surgery soundtrack, my shhhh it was just a nightmare go back to sleep soundtrack… It gave me hope when I thought all was lost. It picked me up when I was down. A while after my closest friend (who I eventually discovered had been planning on asking me to be his girlfriend, and who I then realised I loved far more than a friend) died following a transplant, Torn Apart was there in my headphones. When I was angry, happy, scared, sad, lonely, bored… It was there. A constant soundtrack in my life, to the point that some songs from their first album now trigger the flashbacks they then save me from. I listened to their songs on repeat as I laid battling septicaemia, when we thought I might die. I have never met these people and yet their music moved me in ways nothing else could. I had heard songs before, but never had one made me sit up and listen like Pompeii did in the back of that ambulance.

A week before my 18th birthday, and I had just beat septicaemia again. I was stunned to be alive and couldn’t really comprehend the fact that I somehow was. I was fragile, my health was scarily deteriorating, I felt forgotten, and PTSD had just started to become a major issue in relation to hospital admissions. Bastille were in concert at Alexandra Palace. I went to see them, with my best friend from childhood (brother friend, remember him?). An ambulance was nearly called for me because my heart (which was by that stage becoming a major issue) had a huge hiccup, but we just pushed into the crowd and got lost. And then there it was. The battle was over, I was free from hospital, I had almost made it to the end of my childhood, and standing in front of me on a stage were the creators of the music that got me through it. I stood there, and once again the music was so loud that it made everything vibrate and I felt it run through me. I listened to the songs that had got me through, and a wave of relief washed over me. I had made it full circle, I’d made it to an age I didn’t think I would see… To the sound of these songs, to the music of these people (which would probably never have meant so much to me without the horrors that it got me through). It was so symbolic, that this horrific, traumatic  chapter of my life should end to a live performance of the music that had picked me up right in the middle of the worst of it. I sang along to every word.

Their music was the first to mean so much to me. It introduced me to the power of lyrics, and was the first music to get me through a hell I would not otherwise have made it through. I can’t say anything about these people, I don’t know them, but their music… Their music will always have a place in my heart, because it is part of the reason it is still beating and unbroken enough to function.

“Bad news like a sucker punch, what do you say? | Air knocked out of my lungs want you to stay | When you hear something difficult don’t back away | Some people say nothing, good ones engage 

Don’t turn your back on me | Don’t bury your head deep | Just ’cause you don’t know what to say…

It’s true | That it kicks you in the teeth when you are least expecting | Bad news | Oh it beats you black and blue before you see it coming|

Bad news like a sucker punch moving your way | People fill the streets like nothing has changed | … | Planes fly overhead like any old day …

Maybe I just want some words of distraction | I feel like I’m being consumed | Maybe I’m expecting the perfect reaction | To pull me back…” – Bastille, Bad News

(I listen to this song after every bad hospital appointment, or when I’m in hospital and learn the extent of the health hiccup that put me there. In situations such as that it is often the only thing that comforts me as people usually don’t know how to react, aren’t there to support me through such difficult times, let me down, or avoid me because they don’t know what to say)

I totally relax to the sound of this music. This was the band who showed me the true power of a few lines of words. I once bought an albatross necklace and wore it around my neck as a reminder of all the crap I was carrying around. I listened to a track with the lyrics

“There’s an albatross around your neck | All the things you’ve said | And the things you’ve done | Can you carry it with no regret | Can you stand the person you’ve become

Your albatross, let it go, let it go | Your albatross, shoot it down, shoot it down | When you just can’t shake the heavy weight of living…” – Bastille, Weight of Living (Part 1)

And as I did so, the chain on that necklace broke, and my albatross hit the ground (seriously that thing now won’t stay on any chain I attach it to and it isn’t even heavy… I lost it eventually because it fell off somewhere. If you’re wondering about an albatross being worn around a neck, read The Rhyme of The Ancient Mariner).

When I listen to their music, the albatross never matters. It takes off and sends my mood into the sky with it. Without fail. Always. Suddenly I don’t care about the person I’ve become – I am someone else, somewhere else… Always. Such is the power of music.