How Did I Get Here? – Thoughts on Starting Another Degree

I’m not ok in any sense of the word; physically my heart is struggling, my body has decided to become spectacularly anaemic, and my health continues to hiccup. Mentally, I am in a complete crisis and have been for some time – I don’t know how I’m alive, simply because I’ve no idea how I persuaded myself not to ensure that outcome with my own hands.

But right now I am on a bus. A new version of the old London Routemaster that my granddad used to drive along this route for a living. I am on my way to a new university, to start a masters in cardiovascular science (a very competitive course at a world leading university, that somehow and for some reason picked me). This is a day that for the last three years was something I very hypothetically talked about from time to time. I still can’t believe I survived and acquired my undergraduate degree, let alone that I’m about to start a graduate degree that will hopefully give me the qualifications to make sure that someone else’s future differs from my past and my present.

I’m going to hold my hands up and say it has been a struggle. I denied myself any admission of this reality until I was completely broken. It’s hard. Everything right now is overwhelming and everything is a struggle I no longer have the mental energy to know how to face. But I’m here. I’m somewhere even I never thought I’d be. I’m terrified. I’ve spent days having anxiety (a very unpleasant new addition), nightmares, random crying moments and all sorts about this day, because I didn’t know how to do it. I have been dreading it. Now it’s here and I wonder how on Earth I made it. How am I alive? How did I manage to pass my third year without attending a single lecture, becoming bed-bound, losing most of my friends and replacing their messages with those of paramedics and doctors and other people who understood how it was simply incredible that my body (let alone my brain) could still function. The word inspirational has been thrown at me a lot and I still hate that. I am buckling and crumbling and have no choice but to keep living the life that has caused me to do that. It’s not optional. If it was, I’d be insane not inspirational.

Anyway. I am about to meet a group of new people at a university where nobody has ever seen me unconscious, where nobody has seen me vomit blood, where nobody has seen me in a wheelchair or being stretchered out of university accomodation. I can pass of as an “everybody else” and that’s refreshing. They have no idea how awful I feel both physically and mentally – how much both elements of me are straining to breaking point. They aren’t scared of my body or to be around me. They’ve never seen me in resus, they’ve never had to give me CPR or visit me in an ICU and sit for hours while I lay there totally or if it with no idea anyone is there at all. They’ve not been on the emotional rollercoaster that is my life. They’ve not received messages at 3am when I’m convinced this near death experience is the one where I finally run off with the grim reaper and there’s nobody else there to share the terror. They’ve not seen me have flashbacks in the back of an ambulance, not seen me vomit with fear at the sound of a siren, they’ve not seen me attached to 5 IV pumps whilst riding the drip stand as a scooter. They’ve no idea how much I carry and the effort I go to in order to hide it. They’ve no idea how much my health issues have knocked my confidence, how lonely I feel or how many years I spent in hospital missing all the milestones they hit. They’ve no idea what a miracle it is that I’m still alive, no idea that my former personal tutor gave me a superhero cape after my graduation because he had never believed someone like me could exist let alone get a degree and a decent enough one to get me into a masters programme.

As far as these people are concerned my biggest stress was deciding what to wear, moving into a new flat, the presentation I have to give tomorrow. They have no idea of the wounds haemorrhaging deep inside my soul. They’ve no clue of any scars or how deep they run. I’m just and everybody else today. And that’s why I’m nearly crying on a bus.

Those days you don’t know how to survive? Those days where you can’t go on any more? Today, like most of those before it, is one of those. And I swear to you my former self was very right.

There’s no way but through.

All you need is half a chance. You’re still here. You’ve survived 100% of the days you didn’t know how to, got through 100% of the things you didn’t know how to cope with. If you can do that, given your record, you can do today. You’re doing great and it doesn’t matter if you have no idea how you got where you are right now, what’s damn impressive is that you’re reading this right now. Thank you, I’m grateful but I’m also rooting for you.

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Bastille: The Music That Showed Me The Power Of Music

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

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

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

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

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

But if you close your eyes | Does it almost feel like nothing changed at all? | And if you close your eyes | Does it almost feel like you’ve been here before? | How am I gonna be an optimist about this? How am I gonna be an optimist about this?” – Bastille, Pompeii

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Far From Good Enough

i don’t pay attention to the

world ending

it has ended for me 

many times

and began again in the morning” – Nayyirah Waheed

It is amazing that you can go to sleep one night broken, and wake up considerably more whole the next morning (emotionally I mean, because I am trying to ignore at all costs … refusing point blank to acknowledge because suddenly I just can’t… being a complete idiot aboutshutting out before they shut me down… trying to give myself a break from the things that can’t be fixed). Emotionally this morning, I was shaky, I was just about dealing, I was fragile. I hoped there would be no fireworks because I couldn’t handle the heat, not today. Today I knew I wouldn’t snap, because I could never lose my temper with them like they do at me, but I didn’t want to break.

Other than narrowing down the list of t-shirt selling platforms I am considering using, my actions today were not constructive, but defensive, submissive, focussed on preserving the parts of me left holding everything else together and avoiding any more outbursts. Who cares that I’m 20, this is their house, I’ll do what they ask when they ask it. I will slip back into the role of a child because I don’t have the energy to fight my way out of it. I will still screw up at various points, but it will be easier. 

I spent a significant portion of the day sorting my room. The room that was mine? Is mine. Because this is their home (that’s how she says it, with emphasis on the OUR), and until recently I was not welcome here for an entire three months because how would the world go on? (How will the world go on?) My mother has made it perfectly clear that she wants to redecorate it and use it as a guest room. We already have a guest room, but my 16 year old nephew who currently lives in Dubai with my sister and her husband, decided that he wants to go to sixth form back home in England, so he’s moving in with them and the guest room will become his own. I say ‘them’ because it no longer feels like ‘us’. I don’t belong. And it’s ok, because I figured that out around this time last summer too.

My nephew (who has grown into an extremely polite, pretty damn good looking young man) will be welcomed into this home more than I probably ever will be again. He will settle, I hope, in ways that I never could here again. It stings a little, to know there is one more person to fight for anybody’s attention, that I will be one rung lower on the ladder of preferences. But I love him, and I just hope he is happy here. He’s so close in age that most of the time he’s more like a best mate or a brother than my nephew, and I genuinely can’t wait to have him a train ride away and let him escape to my flat in London when he needs a bit of space (I always used to get the train to my other sister’s house in Bournemouth when home or school or both got too much – often in the middle of the week with less than a day’s notice, but she’s awesome enough not to make me feel like a bother about it).

In a helpful addition, my stepdad is back to being pretty annoyed with me today as well because I don’t do enough around the house… Dude, please. I do as much as I can, more than I should. You just WON’T – not don’t – understand. 

“Where are you (my name)?” My mum just called as I wrote that last paragraph (hence why it was cut short). Instantly, without a split second of thought (other than what have I done now? but not in a sarcastic way, in a completely done with it all way), my heart sank and I fought back tears and tried to keep the sound of my emotion from my voice as I replied,

“Have I done something? I’m sorry-” I tried to diffuse everything before I even knew what I’d done wrong; I felt genuinely bad, awful for inconveniencing them yet again with the things I do (mostly leaving stuff laying around for a little while – a book or my laptop or a used plate, all of which I put away after a little while)

“I was just asking where you were!”She seemed slightly annoyed, but I had just overheard my stepdad moaning yet again about “she” (which is always me) so it wasn’t stupid to guess that she would be annoyed too.

The fact that this reaction was my instinctive response shocked me a little (and also gave me somewhere to go with this blogpost so… silver linings and all that). It made me glad that I phoned my grandparents earlier. They are already coming here on Friday to take me to a ‘thing that shall not be named’, but I called initially just to ask them if they could pick up a couple of storage boxes I ordered (there’s a story of ridiculous levels of denial and a near breakdown behind this purchase, but I will tell you that when I stop refusing to acknowledge reality some other time). Right at the end of the conversation, I said the words that I knew would drive my mother mad, because she doesn’t like me talking to anyone about our private stuff (and I’ve told the entire internet… oops) especially not going to her mother: “Would you mind if- I mean would it be possible- can I please come and stay with you?”

The words came out in a tangle, and my grandma has this way (usually after my mum speaks to her) of occasionally guilt tripping me and telling me that when I hurt my mum I hurt her, acting like I’m some sort of monster who isn’t aware of my family’s emotions (as if I have no idea that my mum is falling apart because of my “things that can’t be fixed”)… But she understands that this house isn’t the best place for me, and has been encouraging me to stay with her and Grandad instead of here for a while (and also said she’d help me fund a medical alert dog, which my mum told her under no circumstances to do when she found out they had offered). I knew I would be welcome, and I could hear how happy she got when I asked her if I could stay. My mum questioned my going to stay with them and pointed out that I usually don’t really want to. I told her that we all needed a break from me being in this house. I got an “Oh for goodness sake” in response, which proves she has no idea what this place is doing to me.

My grandparents acknowledge me as an adult, they treat me like one. They don’t make me hate myself (apart from the occasional guilt trip, but she’s just looking out for her own daughter by dealing with the thing tearing her child apart, as I hope any mother would). They don’t treat me like a child and tell me when to go to bed and what to do and when to do it. I don’t ever have to remind myself that they don’t hate me because I never have reason to think they could. They don’t get exasperated by the things that can’t be fixed, they seem to admire me for them, seem to think I’m strong and inspirational and they say I make them proud with the way I carry on with it all (which makes me cringe and hide away inside myself because those words and my name don’t belong in the same sentence). There will be no stress when I am with them, no walking on egg shells, no falling short of every reasonable expectation that I should totally be able to live up to at the age of 20 and being pressured into overdoing things and frustration from others when I then pay the price.

Until I literally run (well, am driven an hour away) from this house and the toxic thoughts it is once again starting to generate, I’m just going to have to keep hiding from the things that can’t be fixed, keep plastering on a smile and hope that it spreads to my thoughts as well. Although surprisingly, this time, I’m just about staying afloat.

I do my best. But it is far from good enough.

(This is all just feelings, they are based on the facts that generated them, but they are not facts. My family are amazing and they put up with so much rubbish. I am the catalyst that warps my parents’ personalities and shortens their tempers, and that is not fair on them at all. They are wonderful people. It is me who is not. I have many things that can’t be fixed, and they make me fall short of expectations in ways my family do not expect or comprehend. Like I just said, I do my best, but it is far from good enough.)

Antidote

Toxic

(adjective)

  1. Of, pertaining to, affected with, or caused by a toxin or poison
  2. Acting as or having the effect of a poison, poisonous
  3. Pertaining to or noting debt that will probably not be repaid

(dictionary.com)

In the right (or arguably, wrong) circumstances, almost anything can become toxic to us: iron, certain vitamins, glucose, sodium, potassium, calcium, magnesium, medications, iodine, oxygen… Trust. Thoughts. Good intentions… Family. (and almost certainly, to most people I encounter – me).

You’ll note that pretty much everything that gives us life or happiness also has the power to take it away, or at least significantly change it (in the case of glucose, ask any of my fellow diabetics how they feel when there’s too much of it in their blood). The point is that before I go on with the rest of this post, I wanted to highlight the fact that we need most of the things that could poison us. We can’t live without them, and in some situations we can’t live with them. When they work with us, we can function. When they become toxic to us, they bring us to our knees, they tear our worlds apart, they rob us of our health. So I try to limit my exposure to toxins. I tried to limit my exposure to toxins. And then I came back to the place I used to call home, the house that has always felt like a bit of an alien planet where my every move destroys another eco system. Here, I am surrounded by toxicity – poisonous words leak out of mouths that don’t mean them (I hope) but can’t take back what they say; the situation needed for the people in these walls to become toxins (which only I am susceptible to) seems to be my presence. Without it, I am assured, they are happy. With it, I’m not so sure.

When I am present in this house, I also find the conditions are those necessary for myself to become toxic to those around me. I am a neurotoxin. I cause seismic shifts in their moods, warp their personalities. I also seem to irritate eyes and do something to the muscles in my mum’s neck that stiffen with stress so much she can’t move her head. I infuriate them, by accident, sometimes for no real reason other than the fact that my health has pushed them to breaking point and they can’t hide from the reality of me any more. And I eat them alive. She breaks down. She shouts and I let her because I know I am toxic, and I know her words aren’t the antidote but I hope they are enough to kill the vector that carries my poison into her heart.

I guess most of the time here I feel like a toxin, like something they want but are unconsciously and instinctively trying to push out in order to save themselves. So I distance myself from them. I distance myself because the toxins they accidentally spew hurt me more than they could ever comprehend; I distance myself because I myself am a toxin, and I want to remove the source of their pain.

I shut off, shut down, withdraw. I close down any operations non-vital to survival such as maintaining social skills and wearing that stupid false smile all the time, and I retreat into myself, trying desperately to shut everyone else out, trying desperately to pour the antidote of truth over the burning feelings that being here can induce. I give up on myself, and try to do what they ask, to save them. But that always seems to make the situation worse, and I end up feeling like I cannot win.

At one point I was told I couldn’t be here over summer, that it would rock the boat way too much. Now they ask why I don’t want to be here over the summer. I don’t want to be here because I am killing them, and they (and that knowledge) are killing me. One thing seems to make all of this possible – their love. Her love. A mother’s love. I need my mum and under 99% of circumstances I love to have her around (she’s my mum, for goodness sake) but seeing the effect that I have on her is often toxic to me, especially when she has an outpouring of love and my heart just sort of shatters. Like oxygen, I need her, but if I don’t treat her right, things get (totally understandably, and beyond deservedly) unpleasant.

One minute I have to deal with my health issues by myself, the next I’m an awful individual for not letting anyone else be involved, and then I’m even more awful for being the source of their worry and stress once they are involved, so the whole cycle begins again.

My heart broke a little today at lunch when my mum started making plans for them to go to Thailand this summer without me. Of course I want them to have everything they deserve and still be able to go abroad when I’m not well enough, but it hurt that my feelings weren’t even considered. I was treated like a child over the course of the meal (I think my parents forget that I’m 20) which after being an independent adult at university made me want to explode. I annoyed my stepdad – can’t even remember how -but when he closed his eyes and angry-sighed on a few occasions when I was trying to help him but wasn’t the person he wanted a response from, I was finally angry for once at the way he was acting, instead of deeply ashamed at myself (ok so there was a bit of both). A few comments made my self hatred return a little bit; however, in response to this, I firmly decided that this wasn’t a helpful way to spend my entire summer (every cloud and all that).

But I can’t cut them out. I can’t stay away. I feel utterly toxic when I am around them but I now hold onto the hope that one day that will change. After traumatic events, I’m not sure how to trust, and in my eyes love is the sincerest form of that… But I’m hardwired to keep coming back to this house – an inherent drive always pulls me back to this doorstep and occasionally I leave again in tears and stay away for weeks or months until the same drive drags me back again.

I made this mess in their lives and in our family, and sometimes (ok always. ALWAYS) I feel a huge responsibility to deal with the consequences of it rather than stay away (I make things so much worse, and most of the time make problems where there are none because I’m an idiot). Nobody tells you when you are diagnosed with something you will never overcome, that it’s going to destroy the lives of the people around you even if you learn to live with it, that it stands just as much chance of killing them too (just not physically, which in my mind is worse because they are left behind).

In light of my efforts to be someone different, to stop letting the toxins of other people’s expectation (and my desire to do right by everyone) burn me… I’ve decided that after my heart is sorted, I’m going to have a summer of AWESOME. This is probably a result of my motorway musings earlier today. I’ve already messaged around a few of my uni friends that invited me to stay with them and their family (at various locations all around the country) and my fellow banana (long story) who was totally up for the idea of a road trip. A couple of my friends from sixth form are also up for the idea of doing something this summer. I have learned that instead of waiting for awesomeness to come to me, I’m just going to have to generate it. Thankfully I have the world’s best friends, so it won’t be difficult!

Until then, I will just have to stay close to my antidote   

This is my dog at the annual street party held by everyone in our street, which this year happened yesterday. He followed me everywhere, refused to leave my side, and spent the rest of the time laying on my feet. I don’t think there is anything I could do to make him stop looking at me like this, and that completely overshadows the crappy feeling I get when I am impossible for my family to be around. (In the bottom lefthand image, there is a hotdog in my hand behind the camera, and he is trying to look as cute as possible so I will give him a bite… it worked, by the way!)

One day, I will stop mentioning the amazing impact of my furry rock, but until then, you’re just going to have to deal with seeing pictures of him in my posts because now he’s my antidote too… How could you not love that face?!

(On a lighter note, I just realised that according to the third definition of the word ‘toxic’ my student loan is also totally toxic. I don’t think my dog can override that one unless he wins the lottery).