“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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30 thoughts on ““An Act Of Kindness”

  1. Great song! Speaks truthfully, kind of haunting…good stuff. 🤔
    I’ll say more when I’m more capable of thought. Yesterday was a day full of annoyance and stress and tears that forced my body into a 14 hour sleep today, which actually isn’t good for my POTS because I get dehydrated and dizzy as a washing machine. More to come.

    Liked by 1 person

    • Doesn’t sound good. I feel like you may require the services of that rusty spork you were going to use to seek justice against “the perp” (currently loving the sound of that word). In the meantime, I feel like hugging furry, four legged humans with tails (because pets are more than animals) is entirely necessary.

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  2. I’d gotten so good at not obsessively stalking you, and now three posts!!
    Omg Bastille tickets. Squee!!! That’s going to be amaaaazing.
    Exams are in a week?? That is way too soon. Time to talk to the people who fix things about that.

    How’s the thing going that happened? Going to go to court? Are you physically recovered?

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    • Hahaha sorry, no idea why I suddenly decided to start posting more regularly.

      Yeah, it’s going to mean a lot. I love the music and what it means to me, and admire their ability to create such audible art. It’s amazing for me to be able to watch that music performed live. Some people will go to see… the people performing. Feels kind of ignorant to say for me it’s all about the music and the atmosphere. Too often people my age get obsessed with the individuals creating the music without ever meeting them, and forget to appreciate their musical talent. I didn’t realise music could have such a huge impact on an individual until I heard Bastille. If I created something that meant that much to someone I’d kind of want to know. Sounds weird but somehow someday I kind of want to… thank them. For the lyrics and for that unique and ever evolving sound. I’ve lost all hope at the moment. Seeing Bastille perform is kind of all that’s keeping me going.

      Yeah exams are way way way too close. I was told to go to hospital yesterday as from the rate of my heart they thought I needed cardioversion as my tablets aren’t enough to chill my heart out. My hr sat above 150 for over 24 hours. It’s dropped to 130-ish and when I sleep about 114 minimum… but my heart is very tired and very, very painful. It’s running itself into the ground. Because neither me or my mum want to take me to A&E, I have to go back to the heart hospital where the surgery took place next week after my first exam and see how Skippy is doing. Might not be able to fly to Thailand and meet my new baby cousin this summer. My heart is taking everything else down with it, and emotionally I’m really, really struggling right now.

      No, letting the police deal with it. Couldn’t face the trauma of going through it all again. My heart seems to have blown that out of the water for now anyway. It plays on my mind but the nightmares have stopped. Mostly.

      Good to hear from you ☺️ as always ☺️ thanks for caring and stuff, it’s beyond appreciated

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      • Am at the venue, waiting for Bastille to come on. My heart is freaking, I’m struggling to not pass out, and honestly, all that’s kept me going for the last few weeks is this night right here. Music is a very healing thing. Even if my heart has the biggest tantrum ever, this right here was worth it. And it’s going to get me through everything left to come. I cannot explain what this music has done for me. A lot of people are here for… the people. I’m here for the sounds that saved the parts of me that medicine couldn’t.

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      • You made it!!!! ❤️❤️❤️❤️❤️❤️
        My heart breaks for Manchester tonight, but I’m so happy you’re there.

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      • Manchester has broken my heart quite a lot too. What is wrong with people?

        Kind of makes me feel stupid for bothering about my current situation. Collapsed at the concert so ended up missing the end. Had a blue light ambulance ride. Tried to persuade everyone I was fine but my ECG betrayed me and induced panic. My heart is being a complete idiot and I’ve been laid in the resuscitation unit of an A&E department for almost 6 hours. My heart is a bit of a mess and is keeping us on our toes, but it was worth it for the concert. I’m completely mortified about the entire thing, but grateful to be in one piece and safe and not in Manchester. How could people do that to anyone at any time? Let alone to people enjoying such a magical experience… and kids too… 😭😭

        I have no right to feel bad right now, other than for the people whose worlds have just been turned upside down. There aren’t really words. Humanity sickens me sometimes.

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  3. Random question – why aren’t your runabout of tachycardia considered life threatening by cardiology? I feel like if they have criteria for you to go to A&E that they believe that harm may occur I feel left untreated. I just want to take your doctors by their shirt collars and knock their heads together.

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    • My heart does a variety of things, some more concerning than others. Don’t think I mentioned specifically what happened at the gig, but once my ECG was seen blue lights and “you are NOT ok” occurred. I was treated with 2-4 times the usual dose of one IV drug in the resuscitation unit. Other drugs were also thrown at Skippy. They think it’s the surgery I had, said it’s clearly gone wrong somehow. Also I went into acidosis a couple of days later while still in hospital. Once things were more stable I unhooked myself from the monitors and IV to go to the other side of London and sit my exam on Wednesday, then went back, took out my cannula, got my stuff and left (until I went to my exam I’d been unable to walk further than a few metres). I’m breathless at rest, for hours was unable to even lift my head or arms, can finally just about stand and walking just messes me up. It’s the not being able to breathe that’s exhausting me. I’m not able to stay awake long. I really don’t know what to hold onto any more. I think I’m done now. Manchester hits my family very close to home for reasons I can’t discuss. So I feel like I have no right to feel bad about my situation, but I was already done you see. If there hadn’t been traffic outside of the hospital and the buses had been able to drive a little faster, I’d have just stepped out. My health has taken everything from me at the minute. My friend’s night was ruined and she admitted she hated me a little bit for that. I feel guilty. Also my chest just hurts. I have nothing left to lose. I just want a change, and it seems the only change will be an end, and it seems the only way for there to be an end to this is for me to end. Won’t be well enough to see Bastille live again. Was meant to go to an Imagine Dragons concert with my little brother on the 7th (his first ever concert). These things don’t matter, they were just things that gave a little flicker of something to hope for for a while. Wow, this is too long and entirely dull. But yeah. I was in resus for 16 hours and they said that I was 21 and something has to be done, but they had no idea how to help without trying another surgery. Seeing the guy who could do that next week. It’ll be at least a few more months of this, and I don’t know how to do that. The days are so long.

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    • My resting heart rate even when sleeping is 110-150 since the surgery and without diuretics I retain water like a pro. My heart is constantly trying to sprint a marathon, it gets tired and bails on me a little from time to time. It’s never done what it did on Monday at the Bastille gig though and I hope it doesn’t again.

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      • Today has started the same as yesterday. My heart is freaking out, I don’t have the energy to lift my head, I’m dizzy, my lungs feel super heavy and never full, I feel unwell like I haven’t for a long time and I can’t even explain how unpleasant it is (I very rarely use the word unwell). I can’t move. Tried to get up last night and just fell everywhere. I’m too spaced out to read a book and unable to focus on anything else so I’m laying in a dark room (because I can’t get up to open the curtains) listening to my neighbour mow the grass and trying not to think about how this is how I’m going to be until surgery and how far away that is likely to be. I’ve been awake five minutes and pathetically I am already near tears. On the plus side, my friend and I met two lovely girls in the queue at Bastille and I have just been informed that my friend has invited them both to go to a festival with her soon to see Bastille, so maybe she’ll resent me a little less. She went back in to watch the gig and I told her to stay, but she’d never been in an ambulance before and was quite excited to experience it. I wish they’d just left me there. With that music. How bad can the outcome have been? I’m not sure I care any more.

        And the only saving grace in all of this is that this happened to me and not somebody else – not my friend, not any of my family, not anyone else at that concert (I only saw one ambulance outside so I assume and hope that the statement I just made is correct). I couldn’t stand the thought of anyone going through this and I’m grateful it was handed to me and not them. Even if it indirectly wrecks their lives, they don’t have to endure the elements that have brought me to my knees. They don’t deserve this and I’d take on the world just so they didn’t have to.

        I’ll probably miss the Imagine Dragons gig on the 7th and won’t be well enough to go to any other gigs most likely. I’ll certainly never be 5 rows back from Bastille again, but I treasure the memory of when I was, even if I was simultaneously almost passing out a lot.

        My apologies for being so ungrateful. I hate myself for feeling this way. It’s unjustified and pretty despicable I know.

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      • You are who you are. You don’t have to apologize for having feelings, or sometimes being the sickest person in the room, or having learned a too young an age what too much physical/emotional pain feels like.

        What’s keeping you going right now?

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      • What’s keeping me going? Honestly… the fact that for 90% of the day I physically couldn’t act on my feelings if I had the balls to make the call. I guess not being able to function is of use when reality finally, finally gets the reaction from me that people have expected me to give for a while. My physical incapability is simultaneously driving me to want to but also getting between me and letting it all go. Right now I am just longing for this situation to end and I am beyond caring how. Waiting to see my cardiologist next Thursday. Most of my friends don’t know how to deal with this situation so they just aren’t messaging or replying. I get that, because I don’t know how to deal with it either. Just feel… ashamed at myself for this. People tell me it’s justified and understandable but it’s foreign to me.

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      • K so I posted a thing. Tried to not sound like an arse. May have failed. Hate myself for it. You have a sensible brain. Please read and advise. I’m deleting it soon so you may not get to see it. But yeah.

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      • I knew you were awesome before this right here but I’m now completely certain of it! Thank you so much for always being here. I actually really look forward to your comments and you always make me feel less of a 💩. I was afraid it was super selfish as I really struggled to mention stupid old me. Didn’t know if I’d hit the wrong tone.

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      • Ok so as you understand the significance of Bastille’s music, you NEED to read my latest post. It starts requiring all the trigger warnings in the world but what it’s about made me smile and it may make you smile a little too

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      • I am hugely upset and horrified by all acts of terrorism. And these were KIDS. I didn’t tell you, but the first thing I did was to Google the Bastille concert to find out if you were there. I was sick when I realized I was relieved, because so many people died. But I “know” you, and not them. Man this sucks.

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      • That’s so sweet of you.

        What my brain can’t accept is that I was rushed to hospital from a COMPLETELY SAFE concert that night. I feel like because nothing awful happened at that concert, to worry about me enough to rush me to a resuscitation unit (or even worry at all) was just… Not appropriate. This one doctor looked me right in the eye and said that medicine didn’t work that way, that it didn’t mean I couldn’t be in danger too, that it didn’t mean I didn’t need urgent treatment and that it didn’t mean I wasn’t in any danger… but it felt so wrong to be so whole and have so many people so concerned, wasting so much effort on me. I wanted them all to go to Manchester, I actually felt bad for getting help when I knew people were fighting for their lives against an act of man. Like… I knew going to the concert could be a risk to my health. I had warning signs during the gig. Those poor people had no idea. They didn’t get a choice. I couldn’t stop thinking about them. And I feel like such an arse for thinking about myself in this way, for making it about my response when all that matters is those innocent families. I have no right to feel anything about it, I wasn’t there and thankfully nor was anyone I know. And yet, I’ve cried so many tears for those people. I’m deeply ashamed at how selfish I am.

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    • I’m feeling all the feels. That’s so nice of you to say. I’m not special at all which is why I’m struggling to comprehend what’s happened today and stuff. That’s actually such a nice thing to say 😭 thank you a lot. As you can see I’m struggling to words

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  4. You write so beautifully and from the heart Skippy?). One can feel your beautiful soul in your words even when you are down. Wish there was a magic wand to make everything easier for you. You have a heart if gold, and if it may seem a bit weird, I love you from across the pond and think if you always.

    Liked by 1 person

    • Such lovely words, thank you. I don’t need a magic want I just need to somehow get a grip, and now I have something to focus on I just might be able to. It doesn’t seem weird at all! You feel like family 😊

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