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. 

“An Act Of Kindness”

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

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

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

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

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

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

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

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

It all works out in the end, I guess.

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

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

Comfort of… Bastille?

“As the world falls down around us

Give me something to remember

I am holding on

In the back of my mind

For dear life, dear life

Holding on

In the back of my mind

For dear life, dear life

Oh I, Oh I

I am holding on for dear life

Oh I, Oh I

I am holding on for dear life”

Bastille, Comfort of Strangers

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

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

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

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

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

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

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

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

This is why I never go anywhere without headphones.

 

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

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

How am I gonna be an optimist about this?”

Bastille, Pompeii 

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

I wanna feel human again

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

I wanna feel human again

Human again”

Kodaline, Human Again 

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

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

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

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

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

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

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

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

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

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

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

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

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

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

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

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

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

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

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

Blunt.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Testing The Water

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

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

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

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

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

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

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

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

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

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

My thoughts throughout the whole event went something like this:

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

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

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

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

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

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

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

Edit: You’re doing it again now. 

Hornets With Squatter’s Rights

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

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

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

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

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

 

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

I just feel let down.

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

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

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

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

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

I was just lost for words, to be honest.

I still am.

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

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

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

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

It said I didn’t matter.

It said I mattered less.

It said my problems weren’t problems.

It said nobody understood me.

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

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

It said there was no concern.

It said nobody would miss me.

It said… Go.

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

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

I’m willing to take a chance.

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

Nobody knows me at the moment.

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

 

 

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

 

Over & Done With

I’m moving back in with my parents.

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

I am no longer a Londoner.

London is no longer home.

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

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

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

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

Kent is home again.

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

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

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

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

Other stuff that happened yesterday:

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

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

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

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

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

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

The Things I Tried Not To Think

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

25/12

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

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

She said: Just go wherever it takes you.

I said: I feel very lost and very unhappy.

She said: Obviously.”

That was it.

26/12

“They will let me go.”

27/12

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

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

This was the day we had Christmas with my grandparents.

28/12

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

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

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

Having you around makes our family… Difficult

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

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

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

29/12

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

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

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

30/12

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

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

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

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

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

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

31/12

“I am increasingly becoming obsessed with cleanliness and disinfecting

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

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

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

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

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

I don’t know what to do with my life.

My dog thinks my bed is now his bed.”

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

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

31/12

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

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

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

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

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

1/01

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

What do I want for the next 364 days?

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

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

I am poison

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

And then I wrote out this

“[My name]

9/3/1996 – 7/8/2012

RIP

I just want to be I.P”

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

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

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

They don’t know how to not un-help

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

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

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

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

Feeling is so, so much more dangerous than not.

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

Holes, Holes, Holes…

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

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

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

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

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

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

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

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

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

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

How do you mean?

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

We don’t always get on.

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

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

Thank you.

Thank you for loving me.

Thank you for just always being there. 

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

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

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

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

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

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

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

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

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

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

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

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

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

If you need a new year’s resolution then…

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