The Deep End

Sometimes it’s difficult to know how to start these things. So I guess I’ll start right where I seem to have found myself lately – the deep end. Bring a boat, or you may drown.

On the 1st of June I went to see when my next surgery could be done, and what damage the procedure at the end of April had caused. They’d go in through my chest the next time, I thought. 50% success rate. Risk. But a manageable one.

Only he didn’t say that. He said sorry.

He confirmed that the procedure in April had not been a success. He then said that the surgery I had pinned all of my hopes on was way too risky for him to attempt, even if he went in through my chest. When he told me why, my logic agreed with him. He said there were no medications left to try. That wasn’t an option. No conventional or routine surgery was an option either. And he said sorry. And my heart broke into a thousand pieces, not because of all the other implications attached to that, but because I just really wanted to make it to another Bastille gig, and I knew that meant I’d never be well enough to go. Whatever happened at the gig I went to in May seems to have marked the start of a decline so severe I’m now housebound. Most days I can hardly stand. I am too dizzy to lift my head, and don’t have the energy to do anything. I am too breathless to eat, lungs crackling as fluid decides they are a great place to set up camp… My vision fades to black. I spend most of my days in an involuntary sleep. My cardiologist looked at me as we discussed this and just said sorry.

And I watched it all go. Goodbye degree. Goodbye… Everything. I sat in that room and lost it all. I sat, the two health professionals talking to my mum, and I have never felt so lost or alone. Nobody saw me cry. I was grateful for that. My mind went somewhere nobody could reach it.

But my cardiologist is a DUDE. He has done some ground-breaking research in his career and still likes to push at the edges of what’s possible and what isn’t. For example, the procedure he carried out at the end of April was so unheard of I couldn’t find it on google, and the other cardiologist I discussed it with told me it couldn’t possibly exist or be attempted because it would kill me (he wasn’t far off. It’s ruined me a little bit).

I could tell by the look on his face that it was going to be a decision I shouldn’t make lightly. He told me there was one more thing, that this really was the only thing left to try. He didn’t know if it would work. It wasn’t something he wanted or would usually ever think of doing in someone so young. But he was offering me hope in the middle of a void, and before I even knew what it was I took it. I hung from his words.

One thing left to try. I’m doing a degree in biomedical science, so I knew what he was talking about, and I couldn’t actually believe what he discussed was possible. It is, by no means, conventional, but maybe one day it will be. So I listened. And I was terrified. But I was desperate. So when he asked me what I thought, I said yes. Not quite that quickly, and not quite in those words, it was more of a “If you’d told me about this a month ago I’d have told you no way. Now, I want to set my heart on fire. Don’t really have much to lose.” But he told me to think. He told us to go away and to email him. And he just kept apologising.

Things got more overwhelming than that. We decided I needed the surgery within 3-5 weeks of that conversation. The NHS emergency wait list is 12 weeks. The private waiting list doesn’t exist. They use NHS theatres in the evening, have their own ward in the same hospital, and it could have been done within days. He told us he didn’t want us to have to pay. He said sorry over and over and said it wasn’t fair and it was wrong, and you could see that the idea of it made him uncomfortable and very bothered. But we admitted there wasn’t any other option. I couldn’t really speak after the appointment. My mum talked a lot. I put in my headphones and played bad_news quite a few times, until the emotional bottleneck in my mind turned into a torrent of feels.

Turns out that if I wait for the NHS, the surgery cannot happen until NOVEMBER. So that made the decision for us, I guess.

I’m not going to name the price here, but it’s way, way too much. My family can’t afford it. The money will come from my uni fund and goodness knows where else but they say that doesn’t matter, they’ll find it. Finances are going to become very tight. And my self hatred makes this a huge moral dilemma, because I cannot justify that expense on me. It’s only me. When you struggle to attach any value to your life at all, seeing such a large one after a pound sign is very, very hard to handle. I already owe my family enough. I already felt guilty. This guilt became bigger than me. It crushed me. It was almost a physical ache. I asked them not to pay, I told them not to do it. We can’t afford to but we also can’t afford not to. What made me feel even more guilty is that I am so desperate to have the life that this procedure will allow, that despite all of that I still want it. I hate myself and I hate this situation and it’s just… Breaking me.

In order for me to have a life, I have to wreck my family’s… And they will always, always come first. So I found myself in this weird situation. With hope – hope I daren’t take but couldn’t let go of – incredibly close to ending my life. Genuinely I did, to save them the money, to stop the guilt. Because we don’t know if this will work. What if it kills me? It’s going to kill the part of my heart that tells it to beat, what if I go down with that ship? Ideally I need to go into hospital 24 hours before the surgery to be stabilised with IV medication, but we can’t afford that. So what if I almost die afterwards from another health hiccup like last time? What if I need intensive care? What if it all goes wrong? Suddenly this huge value has been attached to my life and I just can’t handle that. I can’t understand it. Morally, this all just feels so wrong.

In the middle of all that, I almost died again. I was meant to be seeing Imagine Dragons in concert that night, but was already too unwell to go. Skippy started a riot, and my blood became acidic in response. I found myself in a resuscitation unit, concern slowly rising, deteriorating after treatment. My heart was such an idiot that my veins were too empty to find. They stabbed at my arteries instead, and even they were hiding. I thought that was it. Honestly, I thought I was going. My mum put in my headphones and played me Bastille, and my mind went somewhere else – she witnessed the power of their music, and from that point onwards people realised the headphones became as vital to my survival (mentally) as the IVs (of which there were 4, and at one point more I think). I lost the ability to move. I barely had the energy to breathe. I drifted off to the sound of Bastille, becoming unconscious and totally unresponsive as my body bailed on me. Panic happened, but not in my brain. I lost myself in the songs. The critical care guys got involved. I woke the next morning unable to lift my head without the world going black (my blood pressure was way, way too low despite a lot of fluids, which meant that rather than me being dehydrated, Skippy was just too knackered to play fair). I told them I was leaving that night because I needed to vote. I did. They had to wheel me to the main entrance because I couldn’t walk, and just crossing the road to go vote made me almost pass out. But hey, I voted. And then I tried to wrap my head around how on earth I’d made it through.

Awful, tragic things are happening in the world, and I always shut down my own thoughts and feelings whenever I hear of them. I have no right to hurt over my situation, I have no right to cry for it. How dare I? Given everything that’s gone on in my home country alone recently how dare I? And yet, the sinking feeling will not stop intensifying. So I just put in my headphones and go somewhere else.

Upon reflection, should I have gone to see Bastille that night? That’s tough, because none of us had any idea Skippy was going to do what he did. He’d never beat like that before EVER or done what he did then. I’m mortified that it happened there. Waking up from 10 minutes of your heart LOSING ITS MIND and seeing Bastille on stage as you open your eyes is kind of a good way to wake up though. But I’d rather have remained conscious. I feel awful for all the fuss on that night in that venue and everywhere since (especially the trouble taken by two members of Bastille and their management to make me a video).

I don’t know where I’m at.

My surgery should hopefully take place at some point next week, and I only found out I needed it two weeks ago. I want it more than anything in the world, and I really don’t. The main reason I want it is because I want to be around and well enough to go and see Bastille again at some point in the future, because a) I am determined that my heart won’t win this one, and b) I’m kind of living for that. Music is powerful, live music is kind of BEYOND magic.

There’s been a lot more going on, but I don’t want or know how to share. Please understand if I don’t post for a while. Sometimes that means I’m on a rollercoaster I don’t know how to get off of, and I just need time. It probably also means I almost died again. Today it also means that everything keeps going black (or Skippy drags me to an involuntary sleep) and then I wake up mid-sentence with no idea where I was planning to go with this post next, hence why blogging is also very confusing and difficult and takes FOREVER right now.

I have no right to complain right now I know, and I hate myself for feeling bad but I just can’t turn it off so please forgive me, I’m trying to get a grip and I just keep spiralling downwards. I’m more upset about London today than for myself, and I hate that my mind still dares to let its thoughts drift to my current situation. The world needs a reset button I swear. 

No way but through.
P.S

One of the most incredibly humans I have had the pleasure of meeting has a little company that makes films, and she is so lovely I recommend checking it out! She’s proof that young minds can create some pretty powerful things, and the idea for her first short film touched on several important themes (I’m actually going now I promise).

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This One Is Hard To Write

There is an elephant in this blog. I skirt around the subject briefly, afraid of its stigma, ashamed of the way it makes others view me. It makes me feel weak and even fraudulent to discuss it as an issue, and the words associated with it make me uncomfortable to type let alone to put out there… so I don’t. Mental health. My mental health (trigger warning maybe, I guess).

In the one space that I have to be open and feel like myself (this blog), I cannot even bring myself to disclose any significant information about my mental state. I replace mental with the word “emotional”, I mention terms only when I am too desperate to care, and the rest of the time I keep myself stuffed into this box. I mention my physical health issues with considerably greater ease, and an equal shame. But the two are inevitably linked, and only one (even by healthcare professionals) is ever properly addressed.

This post is going to be hard to write. But I’m not writing this one for me. I’m writing it in the hope that somebody else who hides from the stigma and the shame might feel a little more comfortable in their skin, that they might take the step that I just took. It is so, so difficult to share, and excuse me if there are mistakes because I’m not reading back through it, but this is for other people in my situation – not even with physical health issues, those who simply don’t know how to face the things they are facing some days, who are crippled by a condition that we associate as an emotion and nothing more (see, I still can’t write the “d” word).

Here goes nothing… (Honestly you have no idea how much I don’t want to do this).

It was someone else who sparked my actions. They’ve been through crap, utter crap. And they learned to love again. They learned to love and value themselves again. They felt like nothing, had no self esteem, but they built themselves up into something recognisable to themselves as a functioning person. They overcame. They sought help. They talked. And then we talked, about it all, and I saw this living proof that people do find the other side. They do rebuild, recover, after unimaginable suffering and cruelty. After learning not to feel anything towards anyone, let alone trust or love, people can reach a state where they open the doors to their wounded, lonely hearts and tentatively try to let someone in again. They had been in the emotional state that I am stuck in, and they are so far from it now. They are in a relationship, a long-term one, and it is terrifying to them, but it is healing. It was like looking at who they were, and who I am… with who they now are, and where I could not (until that moment) ever imagine being.

I can’t talk about why. I can’t talk about the events and issues that sparked everything off. My physical health and hospital admissions are a significant contributing factor. But I can’t talk about the other things. I try to open up, but there is no trust, no relationship before I am shoved into a room with a stranger and expected to talk about how I feel. I see a psychologist due to the nature of one of my physical health hiccups. We don’t gel well, I find her unhelpful and a little patronising, although she’s extremely nice. All she wants to talk about is my health (understandably, duh) but for the first few times we met I just talked about everything that was going on at university last year. And the rest of the time I state fact, not feelings, because I cannot open up to people I don’t know (or all but two of the people I do know) due to past experiences. I’ve sat in her office and begged for help, told her that I can’t cope, and walked out without a word being said about the issue other than I’m sorry you feel that way. But she deals with a lot of people with the same diagnosis I have and I am moved on, thrown out into the world having been asked questions I couldn’t answer and been forced to face the health stuff I am running from, and just because I don’t open up doesn’t mean that it doesn’t start a cascade of outpouring emotion from somewhere deep within me.

For a long time I’ve known that this individual and I are never going to get anywhere. I can’t gel with her and I think it’s too late to hope I will. But I have left my denial more often recently, and for a long, long time I have known that I need help with this area of my health (you really do have no idea how difficult it is to write this, and how badly I currently want to delete every word). I knew I needed to find somebody else, just like I know I need to open up… But I would pop back into my denial because that was the only way to carry on at all, and neither of these things occurred (I doubt the latter ever will).

Recent discussions with my mother (who now refuses to act like there are any issues within our family home at all, which frustrates me a lot but makes things so much easier) dragged up the broken emotional state I am often left in by my family. I have been belittled for so long, not even intentionally, that I belittle myself constantly. I feel like less than nothing. And it hurts more than I know how to convey.

I am becoming extremely physically unwell, and my mental health is stopping me seeking treatment. I am afraid in a way I cannot explain. I am living under the thumb of that fear, it stops me acting in the way I know I should. I’m not even afraid of meeting the grim reaper. I am terrified about university and the impact on that, I am scared that everything that happened before will happen again, I’m scared that they’ll make me leave, that they will take away what on almost every day (in the absence of my dog) is my only reason for living.

I am living alone with no flatmates or family for the first time (not through choice). Until this, my family’s dog was an incredible help to me (which I am aware sounds ridiculous) as he was the only thing that made me feel that I was good for something and had a purpose, and that motivated me to carry on for him, because he needed someone to take care of him. I’m finding it really difficult to cope with things alone, and often want to stay in bed because I don’t know how to face the world. I take great comfort in the company of my bonsai tree, because hey, it is a living thing. But even a fish. I’d really like a fish. Or maybe sea monkeys. Something living. But there’s a no pets policy here.

I have had extremely unpleasant experiences in hospital in the past and relive them on a daily basis which causes me a great amount of distress. It feels as if I am living through the same things again and can be brought on by smells, sounds, and sometimes for apparently no reason. I have nightmares about the same events which are so real that sometimes I am scared to sleep. This means that when I’m unwell I leave it much later than I should to go to hospital because the fear is still so fresh, and become much more unwell than I needed to get. This is also ruining my life in many other ways.
On top of all of this, I am trying to deal with the normal pressure of university (although I’m pretty sure it isn’t normal to panic and feel guilty if you’re doing anything other than uni work. I’m up to date – sort of – but I constantly feel disastrously far behind and so, so inadequate and undeserving of my place at this uni) and the anxiety around how they will react about my health issues (they have been extremely unsupportive and unhelpful in the past).
All I can do in the eyes of my family is screw up. My health tore their lives apart almost as much as it did mine. It broke bonds I don’t know how to rebuild. They resented me. When I get unwell now, there’s this huge outpouring of frustration at me sometimes and I feel like I’ve done something wrong. I’ve been told I’m pure evil, that I’m ruining their lives… And then I’m told not to hang onto those words because they weren’t meant. But I have already hung myself with those words, they kill me every time they are shouted. And when I cry, that seems to annoy them more. I am even shouted at for loading the dishwasher – because I didn’t place things exactly how a certain person would have. I’m shouted at if I don’t unload the dishwasher. I’m disciplined and treated like a child, and not even like the one they like because I have always been the second rate sibling and my dad looks at me like I am filth. I will never be enough for them, and when I’m in that house I don’t know how to live with that.
I’m lonely. I never thought loneliness could bring a person to their knees until I moved here. I dread the weekends. There are no lectures at weekends, which means my life stops for two days. It means there’s no reason to see people, and a lot of my friends work or go back “home” for the weekend. I am dreading the four months of summer where there will be nobody about. I dread coming home, shutting this door and being alone. I fear I’ll collapse or die and nobody will know. I watch vlogs on YouTube and listen to podcasts to try and fill the void, but I hate the lack of company, the lack of sight of anything living. I have not felt loved for years and years, but I have at least never felt alone. And I am so alone. I am so lonely that I fear it will kill me, because it almost hurts.
“I hate it when I can’t hide my loneliness […] what do normal people do when they get this sad?” Mr Robot (I’m actually a little OBSESSED with watching Lucifer but hey this show too)
I considered drinking again. I considered trying drugs for the first time in my life, or placing a cigarette between my lips to suffocate away the pain. I don’t feel lovable. I feel rotten. But I’d rather hurt than be like this. I am craving human company so much I would even prefer to be hit again. Over and over. I hate hurting. I do not want to hurt and I don’t enjoy it at all, but physical hurting feels better than whatever this is. I feel like I deserve it, I feel like I deserve to be punished because I feel like I’m that rotten and awful and abominable (isn’t it amazing the things people can make us believe about ourselves). I don’t care if the company is violent, I just want somebody to want me for something. There is a disconnect between me and humanity, it seems, and now I am shut in this room with more and more room to withdraw and I just want to be with someone. Even if they hurt me. Which sounds as sick and messed up as it is. I’m sorry for writing that.
And there is more, there is so much more. But the thing is, the “d” word isn’t an emotion, it’s a condition which has been linked reduced levels of serotonin in the brain and CNS,  which triggers a crippling mental state. And if it was labeled as “cerebral serotonin insufficiency” or something else, nobody would ask What do you have to be depressed about? nobody would tell you to Just cheer up and stop thinking so negatively. People wouldn’t judge.
And I know people don’t just do this with mental health, because I’m equally as shy and reluctant to admit to people that I have type one diabetes. People think type one and type two diabetes are the same. They aren’t. They both cause patients to produce a lot of sugary urine, and diabetes mellitus  essentially just means to pass a lot of sugary urine. Type one is an autoimmune condition involving the destruction of the beta cells of the pancreas which produce insulin, meaning that there is no insulin produced. It cannot be controlled with diet alone and unless the superfoods people suggest are going to rewind time and prevent the autoimmune elimination of these cells, no amount of berries or whatever else people may suggest is going to “cure” the condition. It is serious. It can kill quickly. You have to do injections or inject insulin via a pump, there is currently no other treatment option for this condition. Type two… The pancreas is fine, it’s happy, it’s whole. The cells just aren’t so responsive to the insulin, for whatever reason. It can most of the time be controlled with diet, or tablets that make the cells a little more responsive to insulin. But people see the word diabetes and think immediately of type 2, because it is associated with obesity and whatever, and the first time I was asked, so when were you fat then? was the last time I openly talked about having diabetes (there’s a post/article on this topic here).
But my point here is there are stigmas everywhere, and it is hard to overlook them and have the confidence to do the things we need to do for ourselves, and allow ourselves to openly be ourselves. These societal stigmas in me induce a great deal of shame. I feel weak discussing my emotional state and seeking help for it always seemed pathetic and weak of myself to me… Yet when others did it, it seemed so justified and normal.
But I don’t want to turn to alcohol again, to go back to getting drunk before I even get out of bed because the only way I can face the day is to be too drunk to feel. I don’t want to end up in a situation where I want to end it all. I briefly consider it, and it frightens me. I have known for a long time that I needed help. And so yesterday night, just before midnight, I sat in front of my laptop screen and read through a website full of private psychologists until I found one that seems perfectly suited. One I think I can gel with, and whose approach I liked the sound of. She has a specific specialty in dealing with people with chronic health issues, but also with PTSD, anxiety, depression, low self-esteem (pretty much me, or at least the person I am becoming – the anxiety is a new thing, is mostly focussed around university reacting to my health, and is highly unpleasant). I don’t want to do this. I don’t want to pay to sit in a room and hurt, and squirm, and hate myself for being unable to open up no matter how much I try. But I need to.
Because of all the things I have, I fear this is the area of my health that is currently at the greatest risk of killing me (ok the frequent early acidosis is also a rather pressing issue but…). I am afraid of the thing within my skull. I am afraid of me. And I was suddenly desperate. Desperation is the only emotion I experience that is more powerful than fear, it is the only thing that will overcome everything else and drive me to do whatever needs to be done – it is what makes me give in and go to hospitals, and it is what made me click send on that email. Because I can’t cope any more, especially not without my dog, who (I know it sounds ridiculous) was a huge emotional support for me and was so helpful to hold when I had flashbacks or nightmares. He made me feel special, needed, wanted. I had to function in order to keep him alive and happy, and that was so helpful to me. But I am desperate now. I can’t cope and I can’t pretend everything is fine – there are too many cracks in the mask for it to hide me any more (I am amazingly convincing at acting happy, which is super unhelpful because people always think I am ok – but I’m too ashamed to let them see I’m not and I. Can’t. Talk).
And I’m sharing this because hopefully in a few years’ time (it won’t be a quick fix) I can repost this, against something written by someone in a much, much better place. And I want to be that living proof that there is a way thorough. I want to spark actions like this in someone else just as my friend has for me.
I might even try to find group therapy sessions or an online person to talk to (there needs to be SO MUCH more emotional support and groups out there for people with physical – or even any – health issues. It would end the isolation and the feeling that nobody gets it, and it might have helped stop me ending up here). But anyway. I’m that desperate. I’m that scared that the feelings to just… Go… Might come back, and they always seem to be stronger than I am.
I’m a mess. And I am so ashamed of what I have just written. But this is the start of the end of that mess (I hope, or at least tell myself, because without hope there is nothing left to hold). The hardest step is meant to be the first step, but you have to use the momentum of it to carry you forward. Accepting that you need help and asking for it are a world apart. Engaging with the help that is offered is even more difficult, but I’m trying. I am finally in a position where I am trying. I haven’t showered for five days (this grosses me out too, I am wearing so much body spray I’m surprised I have any left). I haven’t changed my top for three. I was almost late for lectures yesterday because I got out of bed at the time I would usually be standing outside the lecture theatre (20 minutes before the lecture starts, I get so stressed about being late that I like to make sure). I’m usually ridiculously tidy but I’ve let everything slide, there is stuff everywhere and I don’t care enough to pick it up, but at the same time the mess bothers my neat brain. I am in a rut. I am such a mess. But… I want to change this. And I can but try.
It isn’t fair for me to put the pressure of my issues on friends or uni parents. That isn’t their role and I am selfish and disgusting to put them in the situation where they feel they need to try and support me. I don’t know how to talk and probably won’t, but I’d like to find coping strategies and I hope then I might slowly learn to be able to talk to people that aren’t my uni parents.
There’s a huge pressure in living each day knowing you could die, I guess. I kind of forget that. I overlook the obvious huge issue. I am determined to live again, or die trying.
No way but through.

Enough

The consultant in charge of the ward walks in to see me with one of his henchmen (another doctor). He says the ward sister will be joining us and pulls the curtain as if this will stop the noise. Dread fills me from my toes (I was so tempted to write distal phalanges but… Oh wait I just have) to my cranium. I brace myself for the impact of miscalculated words as he says my specialist nurse has raised concerns about my emotional wellbeing. I try
and fail to explain myself. I tell him about the repeated cycle and that people keep saying it is going to kill me and that in this moment I can’t stand the thought of going through it again, which is stupid and horrendously ungrateful, but a thing I don’t seem to be able to control. I tell him that the team here told me it was negative to think of a recurrence of this situation as an inevitability, that it is realistic. He understands that. He says this is an unusual circumstance that they probably don’t know how to tackle, and that isn’t my fault, even though I feel like it is, like I am doing something wrong. 

“There is nothing I can do to fix this, but please, if there is anything at all we can do for you please tell me. If you need any help just ask. I’ll do anything I can.” I am immediately caught off guard, disarmed, relieved… All in one moment. 

We start to talk, slowly, about how often I am in hospital. He totally understands why. Understands the inevitability. I very briefly mention the PTSD. I say again that doctors don’t understand and try to save my butt using conventional treatment methods that mean I just keep bouncing back into hospital.

“I… We understand. Obviously I cannot say we understand fully, I’ve only met you on this admission and this is not an ordinary situation, but we understand that this doesn’t happen because you let it happen, it happens because nobody can stop it. You’ve been through and awful lot. If we can make this easier for you in any way please just tell us how.” WHERE HAVE YOU BEEN ALL OF MY LIFE? I sit in a stunned silence. We talk about my reluctance to get help, my shame, but mostly the reactions of A&E staff and paramedics, who occasionally think I’m unconscious because I’ve taken drugs, or seem to think I had some control about how unwell I got and just don’t care about looking after myself.

“You’re right there is a stereotype around young people and unfortunately you’re still young enough to be caught up in it.” The sister says. The doctor sighs,

“Unfortunately there are usual circumstances which doctors become very used to seeing. They will initially jump to conclusions. This is very complex and rare. They do not understand this situation like we do.” We talk about getting my consultant to make a plan (which was ignored when he tried this before) and write a letter to explain the complexities of the issue which I can carry with me,

“Yes, that will be good, and then she may have the confidence to go to hospital sooner if she can just hand them a letter so they too understand what they are dealing with. Any doctor will know what is going on from what they see before them, they need to know why. They need to know how not to try and deal with it.” He talks about me in third person, thinking out loud. His henchman surprises me by speaking up in support of the idea. They agree it was a good one of me to suggest.

We talk everything through calmly, I am too defeated to freak out. I feel nothing. I am hollow. I am incapable of any emotion and yet I feel the tears brewing again. He leads the conversation, bringing up different areas which may be problematic and things he thinks need to happen. I quietly, robotically, monotonously respond. He calmly, gently, compassionately continues to talk after each pause. He doesn’t think I am stupid or pathetic, in fact they all seem to think my shameful defeated state is justified. They seem to think I’ve been through a lot of difficult stuff.

He asks me if I am happy with the care this hospital and these doctors are giving me, and how he can improve it, acknowledging the fact that he won’t take it personally and that there are shortfallings sometimes. He also asks where my main care for this health hiccup is based. I tell him London.

We talk about how this hospital and London don’t talk so both tell me different things and these guys seem annoyed if I do what the other says. He says that needs to stop, and he will get the two teams to talk to each other and start communicating, even though the consultant I saw this morning knows my London consultant and expects to bump into him at a conference tomorrow where he will discuss my case (if not, he will call him on Monday. Monday. Is so. Far. Away).

He says while I am in Kent I can’t just be let out of the hospital and left for London to deal with – he wants a district nurse from this health trust to see me once a week (usually associated with elderly patients he admits, but he feels it may be necessary); he says I need better community care from this hospital, more support. He says a district nurse will notice signs of deterioration when I might not, and I may be able to seek help quicker and it may give me more of a chance at evading the grim reaper. He says I need more regular appointments here while I’m not in London – weekly or two weekly. He says I should have a lot of support in managing this health hiccup, especially as it is so complex and deteriorates so rapidly and uncontrollably, taking other health hiccups on the downward spiral it plunges me into. He says he wants to try and reduce my number of hospital admissions.

He totally gets the PTSD. They all do. They are kind about it. They are sympathetic in a non-patronising way. There is a sadness in the eyes I look at, the same helplessness that lies within my own. He says while I am here (as in, an inpatient) I need help to deal with the consequences of that (PTSD).

I apologise again for being so pathetic. They all seem outraged at the idea that I feel that way. The consultant guy protests, the henchman shakes his head furiously, the ward sister says,

“This isn’t pathetic at all, you’ve been through so much.”

“You’re going through so much more than most would cope with.” Another voice says. At some point somebody says,

“You’ve been through enough.” That last word. Enough. I like that word choice. It means finality. It means it is time for it all to stop. It means someone else wants to put an end to this. It means change. Enough.

And then the sister mentions the IV access issue. The line issue. I tell them I don’t want to argue or fight for one, that I give up. The main doctor guy says he can’t do anything about it, but that he thinks I should discuss it all with my consultant here who can act upon it. I tell him I sort of did, although I’m confused as to who my consultant is. We talk through my access issues. The central lines they abandon putting in and try to put in another side or another area, the hours of stabbing while the drugs they need to infuse sit beside me mocking us all. He says he can see why somebody might not want to put a line in me, but that the positives and the negatives have to be assessed and discussed thoroughly. I say I didn’t feel that was possible, and that I now see no point, because I don’t. He says access is a huge issue. 

I don’t want needles drilled into my bone. I tell him what the other consultant specialising in this health hiccup told me this morning, and that it isn’t as simple as he made out. I say I feel like nobody listens. They all understand. He says it must be incredibly frustrating. I say they won’t get many more lines into my femoral vein and definitely not my neck (they now always fail), he nods. I say I’m scared about what happens then, that I don’t want to die while looking at the medication that could save my life if they could get it into my vein. A fresh wave of hopelessness washes over me. My voice returns to a quiet monotone.

He is patient. He is kind. He kneels on the floor the whole time he is talking and I see him shift his weight and wince with the discomfort. He isn’t patronising or condescending. He doesn’t care because he’s paid to care, he cares because the situation I am in bothers him and he wants to fix it because he has managed to retain his humanity. Over and over again he tells me not to apologise. He understands. He actually understands how traumatic it is for me to be here and that when I leave and the flashbacks reduce in frequency, the freak out will stop and I will think more clearly. 

He is calm. He gently asks questions about issues he thinks need to be addressed (but can personally do nothing about other than to give his colleagues a shove towards resolving them) and he listens to the answers. And then I am fighting back tears of gratitude. It is the most helpful conversation I’ve had since my old consultant for this particular health hiccup at another London hospital. I feel listened to. They care. They don’t make me feel stupid and they are deeply sorry that I’ve been made to feel so, and that I feel like I am a nuisance. I waited so long for this. He listened. They listened. 

But it is too little too late.

I am gone. There is, at that moment, nothing left of me to save (and I hate myself for being so pathetic).

“Oh my dance is getting slower now,

Cause my years they’re getting older now,

And my eyes, they won’t cry.

My tears have all run dry…


Will you please believe

I’m not the person you see,

I left that body long ago.

I left it way back there.

Will you please believe,

Given all that you see,

I left that body long ago

But somehow nobody knows.” – Amy McDonald, Left That Body Long Ago

The Wait – “I ain’t afraid”

It was a rough night, fixed by changing one of my IVs so it was more concentrated; but I still woke up several times drenched in sweat as my body clawed itself up the mountain of abnormality back to the peak of near normality where it should be at. There was no panic, but there was concern and hurried footsteps and stress until things started to go the right way. I was too out of it and sleepy to count, but people came in to me very frequently to check my blood and stuff. 
“You’re back!” I was woken this morning by THE NICEST healthcare assistant. “This is one of our regulars this is.” She said to anyone who was listening, holding her arms open in welcome in a way that made me want to return the gesture and give her a hug. But… You’ve only met me on one admission?  

“You’ve come back to see me haven’t you? That’s what it is! (Name of nurse who mothered me and was awesome) isn’t working today, you’ve missed her!” I was so happy to see this member of staff, to have her stood at the end of my bed so cheerfully. She’s in her twenties and has her fair share of health problems. She’s spent weeks in hospital and she totally gets what it is like. She asked me how my exam went. Last time she saw me I was freaking out about the exam I left hospital to sit the next morning (last month). I was so surprised that again, people here remembered. How could they not, you were so focussed on those exams you had no life other than exam stress! I reminded myself.

She sort of half danced across the room with a spring in her step when she had to go and serve breakfast, telling everyone I was her… Something-or-other (something nice, anyway). It was a good way to start the day.

Other than the hiccup of later on, yesterday ended well too. Sixth form friend and his girlfriend came to visit me (even though they’d only left me at 5am) and brought with them edible food (CHICKEN!) and my favourite smoothie (mango and pineapple). Then I fancied another smoothie, so five minutes before the (popular chain of) coffee shop in the main entrance closed, they ran round there, got there as everything was shutting up, begged for drinks… And got them (I paid for most of it, thought I owed them at least that, plus he keeps asking and asking for money). The nurse let them stay way beyond the end of visiting, and we just talked and laughed and the whole time my brain was all I HAVE VISITORS WHAT?! 

Of course, I wanted to leave with them, but I only got as far as the doors to the ward with my drip stand (which prefers to stand than move because who even built such useless wheels for a thing?) and watched them wander off.

My plan was not, at this stage, to still be attached to multiple IVs (I’m not even sure the nurses appreciate the beauty of a central line, because they won’t run one drug through it and instead are running it through a tiny cannula in my hand. They seem to think that if this cannula goes, I need an entirely new central line just for that one drug. Usually this drug runs by itself I think, but that doesn’t matter with a femoral line so…) I feel very well when I’m attached to the IVs but I am well enough to freak out and done with being here.

And then came “The Wobble” (warning: this gets pathetic and sad and mentions the grim reaper a lot)

“I’m not putting a permanent line in you, especially if your heart already has problems, I’d be killing you. They get infected.” Trust the one doctor in this hospital who is against the idea to be the guy seeing me in place of the new consultant who joined my care a month ago. He has no idea how bad my venous access is.

“If we can’t get a central line in your neck we simply put in a femoral line.” Simply? No. The vessels are scarred, the guide wire gets stuck. Often they take over ten attempts and multiple doctors to get any form of central line in, and have to remove it within a couple of minutes anyway because it isn’t placed properly and try elsewhere. They get out their I.O gun to drill a needle into my shin bone. After hours of ultrasound machines and every doctor in the department trying. You have no idea. Stand there. Watch it. Talk to your colleagues. I could be treated much sooner but they can’t treat me because I shut down more and more each second. Thanks for nothing

I explained I knew the risks, pointed out that I’d had them multiple times before and they’d been lifesavers, and that doctors in this hospital have been pushing the idea. He told me I was too young, and walked off, smiling. Smiling. He took my hope with him. He dragged my future away with him too. Instantly, I wanted to end it all.

These people don’t know me. They try and prevent this happening again in the same way they would in a typical case. And it doesn’t work, because I. Am far. From typical. The specialist nurse came back and I lost it. I just broke down. 

“What is the point?” I cried quietly, barely able to speak through the tears, “You all keep telling me this is going to kill me and you aren’t doing anything different.” They finally decide they should speak to my usual team in London, who are actually trying to go places.

“You’ve changed since last time we met…”

“You’ve lost all confidence, haven’t you.”

“How do you feel about going to Norfolk?” I think I’m going to die there. Or before, or right after. I think you are leaving me to die and I have just realised how much I don’t want to. I don’t need to. Please, please don’t just leave me. Call London. Will he even help now? Do something. Somebody please save my ass. Please. Please. I can’t… I… I feel like I’m just waiting for the end. I’m tired of waiting. 

“I think you’re letting me out of here to die, and if this happens again I’m not coming back to be stabbed with needles for four hours until someone tries and fails and tries and fails and tries and succeeds to get in a femoral line.” She laughs a little. Goes over things that London have tried ages before, and that failed. But these people, like all medical professionals, think they know best. Better than me. Better than the team who know me. I message my specialist nurse in London and tell her I’m scared. I don’t tell anyone I’m considering pushing through the entire contents of one of the IVs to end it all. No more waiting. No more thinking. No more feeling.

“I don’t want to do this again, please I don’t want to do this again. I don’t know how to. I’m scared. I don’t want to… I don’t even see the point in…” My talking is lost to sobs. I see no point in the word help, I’ve given up on any hope of it and I know I won’t find it here. I am willing to beg and plead all of a sudden. I am willing to need and ask and depend on people who will not listen and do not comprehend because this is my life. This. Is my. Life.

“You seem to think this happening again is an inevitability.” Because it is, do you not get that, have you not listened to the things I have been told? Will you not listen to me? You can’t stop this with conventional methods, but you can nip it in the bud when it arrives… If there’s IV access. 

“I give in. If this happens again why should I even come back? It’s a horrible way to die but I can’t feel any worse than I did when I came in. It would have lasted an hour or two longer, and then I wouldn’t have to do this any more.”

“I think you need to see a psychologist”

“I think at this moment in time this is a reasonable reaction to the thought of this happening again in however many days. You all keep telling me over and over how this is going to kill me and trying to reiterate the severity of it when I already know, and then nothing changes and you send me out to wait for me to bounce back in again. Do you have any idea what that does to a person? To be told that so matter of factly with no change?” I get the point. I impale myself on it every single day. Stop driving it through my mind. Once was too many times to have that conversation, let alone on every admission, “People tell me I won’t survive an episode like this again and who do I believe? They are always wrong. Until the time they aren’t. Even you said I’m playing Russian roulette.” So take away the gun. Give me a bullet proof vest. Please. Please just help me. Work WITH London although what is the point of that.

“Just let me out.”

“Ok well we need a p-”

“I want to get out.” I can wait elsewhere. I can live until I almost don’t again. I might recover some of the hope that was just crushed. I try to distract her from the fact that I said I won’t be coming back. Where did that whole thing come from? Why am I so pathetic? Wow, that was stupid. Idiot. Idiot. Idiot. 

I feel like I need to get as far away from everyone I know as is humanly possible so none of them have to watch the end, and then meet it, however messy it may be. 

And yet, I will wake up again tomorrow, and my family will be blissfully unaware of everything I have been through and am facing (which is hard for me and very lonely, but I guess I prefer it that way for them) and I will live another day. Because carrying on is the only thing to do. There is no other thing to do, no other choice to make. I have to wait. I just have to wait. And hope that one side hurries up and takes me soon – the grim reaper, or the future. This body isn’t big enough to be shared.

“I ain’t afraid to die anymore… I done it already” – The Revenant (2015)

For Today, It Can Call The Shots

“At least once every month?! That’s…” The doctor shakes his head in disbelief at hearing how often my body ends up in this situation (and has survived it because it’s a little bit superhuman when it wants to be) let alone other health hiccups. He can’t find words to finish his sentence. I can’t stop sleeping, I’ve been treated for a more than ample length of time and yet my bloods still aren’t normal.
“How are you feeling?”

“Better thank you” the doctor raises her eyebrows when I say this,

“Good. You’re better than you were, but not better.”

“You’re playing Russian roulette. You keep doing this over and over and there is going to be a time when they can’t save you from this.” My newest specialist nurse (the one from this hospital) says, frustrated with me for listening to my London consultant (my regular consultant) over her (who manages my care if I end up in hospital when I’m not at uni, and has known me a month). I know. I’ve worked my way around the barrel of that shotgun a ridiculous amount of times without finding the bullet you all tell me is there. I’m beginning to wonder if it exists. (See, surviving health hiccups makes me feel temporarily untouchable by man or beast). Also, you’re talking like this is something I have any control over and I still don’t think you comprehend the issue and the fact that I’m clearly not. Why are you angry at me for listening to a CONSULTANT who has known me a lot longer than you have. You keep telling me that every idea you’ve come up with I say won’t work – because I have rare complications, I have tried your suggestions multiple times with multiple doctors and overcome attitudes like this from nursing staff just to persuade people that my life is worth trying to save. You are not in the loop, that isn’t my fault – I can’t help that London are miles ahead of you. I’m getting frustrated at you and your attitude towards me. You are so far behind in terms of where I’m at with treatment now, I am not like everyone you’ve dealt with, and I know my body very well. Stop it. Stop talking to me like that. 

“This is just a general district hospital, if you want something specialist like a Port you’re going to have to go to London” she continues, looking at me like I’m stupid and talking to me as if I’ve asked her to give me her pay check. Ridiculous. I think, you people wanted to put one in me a few weeks ago.

“Back again! I came round to see you earlier but you were asleep.” The lovely nurse who looked after me for one night about a month ago. The night so many doctors failed to get a line in me with ultrasound assistance that I eventually cried (no idea why). She abandons whatever she walked in here to do and talks to me, asking about my exams and everything, which I’m surprised she even remembers.

“Of course they put in Portacaths here! Let me see what I can do.” She comes back an hour later having spoken to the oncology nurse, who says that yes they do such things here. She says she will discuss it with the doctors, although almost every one I’ve encountered here has pushed me towards getting a Portacath anyway, which is what gave me the confidence to ask. She tells me who needs to be emailed about it and stuff, but says nobody should refuse given the circumstances. 

A doctor walks in. Attractive. Mainland European I think.

“You don’t look very happy to be in hospital. You must be sick of them by now.” I nod. I look at the blood gas syringe in his hand and know he’s about to stab my wrist, an action for which he is already apologising for. He shakes his head,

“I couldn’t imagine being stuck in hospital so often at the age of 20.” I don’t have to imagine, I think. But he seems to be human and actually capable of compassion and humour. We talk as he sticks a needle in my radial artery. 

“So how do you feel about that?” He asks me, talking about another permanent line.

“I see why so many doctors have suggested it, yesterday was scary.”

“It was incredibly scary for us too! I think you having a permanent line makes things a lot less scary and traumatic for us and you, and means we’d be able to focus on treating you instead of trying to gain access.” He isn’t even trying to get blood from a vein, and my femoral line is a little blocked and has drugs running through the lumens that aren’t blocked. I also have a reputation for my non-existent veins. 

He tells me that with my anatomy knowledge I should study medicine. I laugh, and then flinch. He hits the artery, but it won’t bleed well at all… Until he takes the needle out, I feel a flush of warmth, and my own wrist paints my hand and the bed red.

I decide to make myself useful and make the bed, feeling bad about the blood everywhere (I’ve bled everywhere over the last 24 hours. The cubicle in resus looked like a war zone when I left it. The floor was not pretty; in the panic, doctors had thrown all their medical rubbish onto the floor, including tourniquets, needle coverings, syringes, wrappers that once had sterile contents, blood soaked gauze, and a surprising amount of just… Blood). I also decide I don’t want a hospital gown (this one is, like myself, also covered in my blood) and change into a soft dress I like to sleep in. I add fluffy socks because why not? I am only attached to three IVs. Things look good. I feel good.

The doctor walks back in, excited, my blood results in his hand,

“You’re much better than you were, congratulations!” He beams at me, “Your bloods are almost back to the limit between normal and not.” I smile, he smiles. I used to feel like I was dying with numbers such as this, before they became the norm. They’d put people in resus with bloods like mine, but I am almost safe again. Thank you IVs!

Sixth form friend messages me to clarify that I am actually his sister now. His girlfriend messages me to tell me to stop apologising for last night and clarify that she isn’t scared to go to Norfolk with me at all, that we are going to have THE BEST time, and we will deal with any health hiccups if and as they occur. I immediately feel all the feels.

My body is extremely upset with the events of yesterday. My entire legs are blotchy and mottled. My lower legs and feet are stone cold, as are my hands (the doctor struggled to find a pulse when he was trying to find my artery to stab it) My blood pressure is low despite IV fluids. I’ve swollen up like someone attached me to one of those machines that inflates your car tyres at the garage. I am so tired I’ve fallen asleep multiple times while writing this, and will do so again.

I brought with me the iPod I got in the middle of my longest hospital admission (and hadn’t actually even charged since last May when I got my new phone). It is filled with the music that got me through (there was so much I forgot!) and photos of me with nurses and paramedics and doctors who would sit and eat their lunch with me and even (half out of it and in pain after surgery two days before) my 17th birthday. There are pictures of me last April with hardly any hair (due to a medical treatment, not a radical haircut). I look awful, I am a skeleton. Painfully thin (and this is saying something seeing as I can still see every single rib at one point at least). I gave up on the photos because they induced a horrendous amount of terror (memories of that hospital) and an extremely unpleasant flashback. But the music, the music is like wallowing in hottub of nostalgia. 

So excuse me while I go wallow and give in to this sleep and finish escaping the grim reaper. Who cares if I’m not quite out of the woods yet? I like trees. And I am alive. I am incredibly grateful, and incredibly thankful, and overwhelmingly lucky to be in the situation I’m now in, and escape the situation I escaped. I haven’t started freaking out yet, which means I’m ill enough to be here. 

I’m completely exhausted and wiped out, but listening to my body this time. It nearly killed me again, but then miraculously allowed itself to be saved. I feel like it deserves a reward because I am proud of it for seeing sense. It is also demanding sleep and inactivity so strongly that I cannot fight it. So… I give in. For today, it can call the shots.

Lauren Aquilina: Getting A Grip

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

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

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

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

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

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

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

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

The Fight Is Over

“Everything will be all right in the end. If it’s not all right, then it’s not the end.” – The Best Exotic Marigold Hotel (film)… A line that was quoted to me by uni dad during particularly crap times, but that I didn’t believe until today.

Yes, yes, yes. So many levels of YES! No more fighting. I’m overwhelmed by a hopeful relief to the point that words are currently failing me. I don’t know where to start. I’m too impatient to go back to the beginning and too stubborn to start at the end (so you’re going to have to read through the rubbish to get to the good part, sorry).

This morning I tried to print emails and type up notes to take to my disability advisor at university to discuss the whole ‘support? Yeah we aren’t going to do any of the things the disability services said’ situation that has been occurring for the last year, and has at times left me suicidal (ok, wow, I’m so over the moon that word doesn’t even bother me right now). Anyway. I became so terrified about the whole thing I ended up a bit of an emotional mess, and spent an hour listening to music before I could re-attemtpt my brief summary. I was terrified about having to fight the university again just to get some support. But I eventually managed to make bullet points anyway.

I went onto campus. Instantly every single part of me was at home. I ditched Winston the wheelchair and outraged my body by walking from the back of the building to the front of it. It occurred to me as I got in the lift that I’d nearly died in that building, which gave me the creeps, especially as it has a morgue in it and is the site of our anatomy practicals. I went to the deputy head of disability services, who I’d met with before, and we discussed everything. He was so supportive. He was also appalled, disappointed, and seemed quite horrified. He called the situation ridiculous so many times that the word started to sound funny. He said it sounded pretty horrendous to have had to go through, which made me feel less embarrassed about the impact it has had on me emotionally at times. He apologised. He shook his head pretty much throughout our entire discussion so much I wondered if it might work itself loose and fall off (yes I know this is anatomically impossible).

He said the staff hadn’t supported me in the way they were meant to at all. We talked about the wheelchair situation. He said they can’t kick me out for not doing assessments due to my health, and that if walking up the stairs in a building with no lift makes me so unwell, it is ridiculous that the practicals weren’t moved. He said allowances can be made for my coursework, so I don’t need to leave the uni if I can’t carry out the practical part of our coursework (which never goes right anyway, so we always look at model results). He suggested I spend another year in halls due to my inability to travel much or walk any sensible distance, and that even though it was past the deadline the disability services could sort it out. He’s going to recommend that all my lectures next year are in wheelchair accessible locations (in case I can’t ditch Winston). And the list went on and on and on (because there’s a lot of crap that I won’t mention on here because it makes me feel so angry and hopeless that I cry when I even attempt to summarise it). He said if ever I need any support at all I should just go to the disability services (he’s my disability advisor) even if it’s once a week just to rant. I found someone to talk to about my health, and it felt good, so I briefly summarised the bleakness I was up against.

I cannot explain how amazing it felt to finally have some support at university, someone willing to fight my corner. He’s determined to make sure next year is very different from the start, and said it was incredibly sad to hear that all I’d cared about was not missing deadlines or getting ill on campus, often to the detriment of my health (because I didn’t go to hospital when I needed to, and often ended up in a heap on the floor). He said he’d rather I just please called an ambulance onto campus. He’s going to change the document the university were given about my health and the accommodations they should make for it, and mention that I’ve been unsupported over the past year (I kept telling him I was scared of the university and didn’t want to upset anyone. He persuaded me to let him just briefly mention it). He asked why on earth I hadn’t been to see him about it all sooner. I said that I was extremely worried that I was making a fuss over nothing. He told me I was doing far from that, and that it was actually his job. I felt better. Actually, I felt happy. Happy. Actual happiness. (This isn’t even the good part yet)

I didn’t really have time to start freaking out about the hospital appointment right afterwards. I got to the hospital at 3:10, and didn’t leave until two hours later. Honestly, in that time… My life changed. (This is the slightly less awful good part)

The man that took away all my hope of a future just gave it all back to me. 

The man who left me to the grim reaper decided that he was now willing to try and save me from him, seeing as how I’m not dead (and he talked about a service dog so that was awesome too). I thought I was going to have to fight with him. I thought he was going to leave me to my fate again and watch me bounce in and out of intensive care until the grim reaper managed to pin me down. I thought the crushing hopelessness his appointments usually induce was going to overwhelm me all over again and I sat there with two of them looking at me, preparing myself for the emotional pain that… Never arrived.

My guard was up and I was terrified, shaking, wanting to throw up, trying to look anywhere but at him… For no reason. This time he talked about heart failure and varied kidney function and stuff that was nothing to do with him (although he really does want to look into the kidney stuff more, but getting blood from me is impossible, which is why I haven’t gone to have the “weekly blood tests” I’m meant to have at all since they told me I had to – I do not want a long line yet. He does however, think I should definitely go and get the bloods done, because he’s all concerned about my kidneys even though I have a separate consultant for that). And then he got around to the bit of me he has to think for, the health issue he is meant to be helping me with

“Well, the situation doesn’t seem to have changed much.” Here we go again,

This is very dangerous. Your body can’t keep doing this (he means the medical emergency that frequently puts me in intensive care and on an almost monthly basis almost takes my life), each time it does you’re at a greater and greater risk of… It’s incredibly dangerous.” Yes, I know, and it’s going to kill me and you don’t know how to stop it because you can’t be bothered to try and…

Have we ever considered (some surgery that had only been done on one person in this country last time it was mentioned to me and is still only offered in two hospitals under very extreme/ desperate circumstances because I don’t even know why)?” Excuse me? What did you just say? Did you just… Did you just say you want to try and beat the grim reaper? DID YOU JUST SAY YOU WANT TO FIGHT FOR MY LIFE WITH ME?  The stunned look on my face must have been misinterpreted as one of horror, because he put his arms up like I was about to shoot him and said,

“Ok, ok… Not necessarily that, but this isn’t a typical case at all… I think with you we’re going to need something… Drastic.” Like what? I think but am still too stunned to say.

“Ok, alright. We’ll talk about it next time I see you.” No, no, I’m relieved I’m not freaking out, let’s talk about it NOW! I just can’t believe you’ve changed your mind about seeing a point in trying to… Try. I suggest another, more common treatment that I’ve tried before, because I’m too stunned to be thinking properly or saying what I want to say, and the one he is suggesting involves an entire new team of doctors at another London specialist hospital where I had horrific experiences when I was younger.

“Like I said, I think we need something more drastic with you if we’re going to get anywhere at all with this.” He says softly, gently nudging me out of my denial. Preferably before it kills me right? Who even are you? Are you real? WHO ARE YOU AND WHAT HAVE YOU DONE WITH THE CONSULTANT WHO WAS PERFECTLY HAPPY TO LEAVE NATURE TO TAKE ITS COURSE??  I looked at my psychologist, who I’d asked to attend the appointment with me because the last one left me so hopeless that afterwards I was so much of an emotional mess I couldn’t even walk and even cried in front of the doctors. She smiled at me. I looked back at my consultant, sat in his chair, and then behind him to the kitchen window of the flat I used to live in (in my university halls, until a week ago).

Yes, everything else going wrong in my body is going wrong, and no, he can’t stop this or fix the issue or deal with anything else – but I’ll be back to the same chance of dying as everybody else who has this condition (well… only in regard to this condition, but this is the thing most likely to kill me and most IMPOSSIBLE to fix, so that’s awesome), and that’s all I want. In the meantime, I’m probably going to nearly die again, and I’m prepared for that. Maybe this time will be the time we don’t win, maybe this time will be the time that the grim reaper manages to get me to elope with him. Maybe this is too little too late. But beyond that almost inevitable event, I think there is hope… Hope where there once was a let down. And with hope, who cares what happens? Because there’s suddenly a point in holding on and a lot more to hold on with.

No more fighting to get support from the people who I rely on for it. No more fighting to stay alive alone. No more fighting to convince someone that my life is one worth fighting for. No more fighting for this consultant to try for me… No more fighting. No more wearing myself into the ground. Who cares if there is fresh concern about my kidneys?

Today was amazing, even if the points about my worsening health were far from it, because suddenly I have hope, suddenly this consultant is willing to try like I needed him to. And when I got back to my parents’ house my dog was there and the two new books I ordered online had arrived (one of which is another Remarque – Spark of Life).

So today my life changed. Genuinely. A single consultant made that much of a difference by doing what I wish he’s done months ago when he pretty much gave up (seriously, thanks to him, I very nearly didn’t make it to 20).

“Change is hard at first, messy in the middle, and glorious in the end.” – Robin Sharma 

I didn’t believe the end of this quote either, but as music flooded my ears on the way home, it was all I kept thinking. I also kept thinking that uni dad was right, and part of me wanted to tell both of my uni parents that there was hope now, that they’d got me through the hopelessness and they were both SO RIGHT. But I can’t talk to either of them so… Anyway. The relief is indescribable. Finally someone at uni, and the consultant who gave up on me, are on my side.

The fighting is over. 

This is all going to be ok.

Wings of Wax, Wood, & Steel

“Look who’s digging their own grave | That is what they all say | You’ll drink yourself to death…

Living beyond your years | Acting out all their fears | You feel it in your chest…

Standing on the cliff face | Highest fall you’ll ever face | It scares me half to death,

Look out to the future, but it tells you nothing, so take another breath,

Icarus is flying too close to the sun

Icarus’s life, it has only just begun

This is how it feels to take a fall

Icarus is flying towards an early grave.” – Bastille, Icarus

Shortly after I wrote my last post, we found out that a well loved relative has  a confirmed case of prostate cancer. In a scale of 0-10 in severity, the doctors ranked it at a 9. He has to have 5 days of radiotherapy for 7 weeks, and it is too risky to operate. With treatment, they’ve given him ten years, which given his age is an impressively long amount of time. When we first found out a few weeks ago, I cried for him. A lot. Because when you think about losing someone you realise how deeply you care about them, and my level of caring for my family runs right through my core and out the other side of me. Everyone around my parents’ dinner table was really pleased to hear the news (the ten year part, not the fact that he has fairly advanced cancer). They soon went back to worrying about what shoes my mum is going to wear when she goes out with her friends on Thursday, while my brain stayed stuck on the man who never fails to make me laugh until I cry.

In light of this, and various other stuff that I didn’t really know how to deal with by myself, I had a couple of beers. Literally two small bottles. That’s all it took to get me drunk in my current state of health, and (as I always do when I’m drunk) I began spouting off things about biomedical science. This morning I found a detailed sketch of a human pelvic girdle in my notebook (labelled and everything, male, judging by the features I’ve drawn) with writing at the top telling “my sober self” to “be strong like a pelvis” (I don’t even know, we’ll leave that one there). I also wrote what follows (I felt I should contextualise the whole thing). Drunk me is incredibly honest, blunt me, and it seems the only person I could talk to last night was my laptop, and now you guys. Say hello to drunk me, she says all the stuff I normally wouldn’t. Warning: she mentions the grim reaper, but they are thoughts I really wanted to share and couldn’t find the words to because shame stops sober me from doing so. 

Ten years from now the people I love probably won’t all be together if the doctors are right, but then again, doctors are often wrong about what humans can survive, and what they will be capable of if they do. Even we do not know what we are capable of until we are doing it. But I’m scared. I’m scared for him, and I’m scared that even in light of his health sucker-punch (because let’s face it, that is a bit beyond a hiccup), his ten years are a lot longer than I have. And this is only a little bit of the alcohol talking, because all the extra OH groups haven’t corrupted my brain cells enough to switch off the emotion yet (may I just interject and say SEE, drunk biomedding! – yes this a new term I have invented for my brain’s drunken refusal to think about anything other than biomedical science usually. Anyway, I shall let drunk me continue). I am still scared. I shouldn’t be, it is selfish to be, and I don’t know why I can only admit the level of it when my inhibition is bathed in beer (which it was stupid of me to drink, because my body struggles enough, but honestly, I couldn’t. I just couldn’t. There was nobody to turn to. There were only bottles. I can’t even look at the dog because my fingers find that new tumour thing on his leg and it just breaks me every time because that scares me too.) Anyway, I’m scared (and incredibly grateful that my laptop has some weird autocorrect function. Thank you Mac, you have served me well). Wait, I’m trying to say a thing. I need to say the thing. What is the thing?

Ah, the thing.

I am Icarus…

Not actually Icarus, but pretty much Icarus. The story goes like this: Icarus was in a pretty bleak situation right? He was being kept prisoner (with his dad) by some king or something I think, and his dad made these wings out of wax and wood so that they could fly away and escape, so obviously they had to stay away from hot things. Icarus had a brain, he clearly knew this because duh, wax. But he was so happy to be free and so ridiculously excited about the fact that he could fly (because hey, he could fly!) that he flew too close to the sun, and the wings melted, and he plummeted to his death because he was an idiot that couldn’t listen and do the sensible thing like his dad told him to do (and like uni dad always used to tell me to do). Now do you see why I am Icarus?

I dance with death too often, and it’s making me dizzy. I put myself in dangerous situations to avoid safer situations that just feel dangerous because PTSD takes over and I freak out. For the past few days, I’ve been giving myself IVs into tiny veins between my toes that normal cannulas would never fit into… Every four hours. To stay alive. Because my body needs a lot of help and even at the thought of getting it I lose myself in a flashback and freak out to the point that I want to run out of my own mind. I was told to go back to a hospital if I ended up in this situation. That so. Cannot. Happen. Should, but won’t. Stupid, Icarus.

Part of me knows that the inevitable will happen, that I am stringing myself along in a medical emergency and that I have an even narrower margin of error before the grim reaper and I elope together, never to be seen again. A far stronger part of me is in a primitive state; it learned, like an animal learns. When it is scared, it hides away and pulls my rational mind around it like a balled up comfort blanket, and it lashes out like an animal lashes out, baring its teeth and making a lot of noise to try and scare away whatever it is scared of. It learned instinctively through the things that it has experienced, through the things it relives in flashbacks fairly frequently… And it has chewed off of its leash and is ruling supreme. Isn’t that what fear does? Doesn’t fear turn us all into primitive beings focussed only on survival? I am not scared of death. When you’re ill enough to die or even just lose consciousness, it comes as a relief, trust me. I’ve laid in hospital beds and longed for it as septicaemia and the grim reaper joined forces. I just don’t want to die. And I’m scared not of the fact that this might happen, but that I don’t have a choice in the matter, that I am out of control, and that people will tell me I flew too close to the sun.

I have been flying too close to the sun for a long time. I’ve done incredibly stupid things to save myself, and somehow a lot of it has worked. I’m going to see a consultant tomorrow who gave up on me in February and pretty much just left me for the grim reaper. The bit of me he is supposed to think for (because clearly it can’t think for itself) has nearly killed me (and I mean resus, ICU, out of it for days kind of nearly killed me – but no ambulances, because I don’t call those, which the doctors in A&E couldn’t actually believe because I swiftly decided to turn into a human rag doll and require their immediate services and sterile minor surgical procedures in the middle of resus. Yay me. Not. Body, if you are listening, no more of that, thanks.) multiple times since then. I was nineteen at the time he took all my hope away. And honestly, making 20 was a huge surprise (no seriously, I spent an entire month terrified of the end, then I nearly died a week before my birthday. Got out of ICU about 5 hours before I turned 20 and went straight to a concert having only just figured out how to walk a couple of hours before. My body is superhuman when it wants to be, but see: I’m stupid. Icarus). I don’t know how to look him in the eye tomorrow. I don’t want to look at him. It feels like me against him and his team because how do you trust people that left you to die, and then suddenly when you defied all of the odds decided “ok, we might help now. Actually, we’ll just tell you some things that might help and then… Not do them!” How do you let those people have your life, your health, in their hands? How? Why am I crying at the thought of that? Why am I shaking? Why am I seeing his face and breaking down in front of a computer screen? Damn, I’m pathetic. And drunk. I think I’m definitely that. I’m drunk because I can’t deal with the thought of dealing with him, and of losing a relative, and of beating that amazing relative to the end of the road.

Also, when I get out of hospital having nearly died, my health is superficial – we’ve patched me up but we know I’m going to nearly die soon and we hope we can stop it again, even though each time the long-term effects become more and more of a likely risk. I leave hospital with fragile health made of wood and wax – I escape like Icarus did, on wings that are not made to last. But I am always so happy to be out of hospital, and so excited to be able to walk a short way or go back to uni or whatever, that I push myself way too far. I fly way too close to the sun because I want to keep up with the people that live in it. I lose myself in the belief that I can keep up with everyone else. I lose myself in the fear that my university won’t accept me unless I appear to be doing anything but that (nope, not going to start that one, saving that for the other meeting tomorrow. Which I will probably post about because hey I bore you with those things. Why do you read this blog? Don’t you hate me for it? Don’t you think I’m pathetic? My family do. I think they hate me. My dog doesn’t. He is currently judging me for being slightly under the influence of the liquid product of some fermented hops). What even am I writing. This is so not the thing. Back to the thing.

The thing is… How can I even be so insensitive as to think about the thing? I have it easy compared to most. I think I’m falling apart. How do I even have the right to fall apart? I’d like to fall together, but I don’t think the world needs an entire being of such high levels of selfish patheticness… Is that a word? I like it even if it isn’t, it can stay in this post.

Sometimes I have a day or two where I just refuse to accept the situation, the front slips behind the frontline of my false smile, and then I freak out. Hasn’t happened since a couple of my consultants last told me how close I am to the sun – that my body and health are made of wood and wax, and that they’ve no idea how to stop them melting… Right now, I have no idea how I’m almost touching the sun’s surface, and my wings are still intact. I don’t think they really do either. It’s impressive, given everything my body has gone through lately. But I’m scared. Because instead of falling to the earth, I will probably fall into the sun instead and oh help this is also not the thing.

The thing.

One day I want to wake up and for all of these extra thoughts to be gone. Just for a day. I just want to stop trying to manage all of this on top of normal life and… I know all of this is so, so, so pathetic. All those people you see on TV handle their health so well and I’m not even worth the ground those awesome human beings walk on. One day, I want to wake up and find the wings of my health are made of steel again (which would still include diabetes because I don’t remember ever not having to inject so that would probably weird me out), because if they were…

“I would fly away, I would catch my dreams and never waste a day.” – Final Story (Flying Lessons With Icarus)

I don’t even know where I fond that quote. But there. Drunk me went off to hug that dog at that point I think. And then slept. And is now gone. But that’s it. That’s how my brain works. That’s what I think when I sit there in silence or can’t figure out how to even answer a text because the roar of these thoughts drowns out everything else. Today I have an appointment with my disability advisor, and right after that  I’m seeing the consultant that left me to my own fate. But the fear is somehow gone, it grew to such intensity that like a dying star it collapsed under its own mass and gravitational pull. Today is another day. My world began again this morning, as always. And all of that stuff was folded neatly back into its place. 

Yeah… I Can’t Think Of A Title

I miss London. I can’t tell you exactly what I miss about the place where I’ve always felt I belonged, because in truth, I miss everything. London is home. I have lived there, nearly died there, walked its streets at night, fallen apart there, had my first kiss there, ridden the highest highs and the lowest lows… London welcomed its arms to me when I left home for the first time; when I was a younger teenager during hospital admissions I always spent a day in London with my friends if I was let home for a weekend, or sometimes I’d be let out for the day just so I could drag my family (and a PICC line and an IV pump) there… And seeing all the TV coverage of the queen’s 90th birthday celebrations, and the skyline I’m used to seeing from the window of my flat, made me yearn for home. Seeing the hockey they are playing in the olympic park, which I could also see the other way from my window because I lived so close to it (and hear, and see the lights reflecting back off of the clouds if there was an event on)… Made me miss the flat I’ll never live in again (but then I remembered the kitchen and the hygiene levels and was glad to have escaped). I wanted to be in Mile End. I wanted to be wandering around Barbican or be by the Thames or walk through Richmond or lay in Hyde Park again. I wanted to lose myself in the city where I finally felt… Found. And then it came.

I miss uni. I miss lectures. I miss learning and thinking. I miss campus. I miss the building with no lifts that almost killed me (Literally. I usually ended up in resus a couple of hours later) every time I had to get to the second floor to do a histology practical. I know I said I’d have a month off of studying and freaking out about exams (because I won’t sit the two I missed until August) but exam stress is already starting to bubble away again and… I figured out who I am. Or at least, short-term, who I want to be. And I decided that I want to start revision now (basically just start looking over lecture slides on my phone to fill ‘The Void’). Because all I want to be right now, with every single part of me… Is a second year undergraduate Biomed. student. I am this degree, and this degree is me; and as long as we are together, I realised, everything will be ok.

Reading is occupying my mind some of the time (All Quiet On The Western Front – a feast for the A level english literature student part of my brain that still lives on), and Breaking Bad has me hooked. But there is something missing. There has been a noticeable void, and my writer’s brain seems to have fallen into it right after I promised I’d finally test the water and agree to write a magazine article (which is so. Totally. Not. Happening. Because who was I even kidding when I thought I was well enough in a fit enough state to do that? And what do I even write about because has anybody read the junk I produce?) I tried writing some of the new pile of utter trash novel I’ve been working on, and writer’s block reared its ugly head.

I can’t focus. I can’t stay ‘with it’ long enough to achieve anything before I am dragged back to sleep or have to fashion another rudimentary IV in order to save my own life again (I also don’t think staying out of hospital is going to be a possibility. I keep ending up in the same situation as the other day without warning. I realise far too late because my body is in such a constant state of “too close to death” that I don’t get particularly symptomatic when it gets to the whole “very extremely close to death – hours away – unless you do something NOW” state; by which point it’s so late that I collapse a couple of times after using teeny tiny needles to hit teeny tiny veins because I can’t find any other usable ones, and just have to hope that what I did will hold me for another few hours before I have to do it again, or at least mean that I will at some point wake up and not have to bother anyone. Not even an entire day now. Hours. Not. Good.)…

I open lecture slides on my phone… And none of that matters. I am lost again, wallowing in pools of knowledge that overflow from the brains of the people who took the time to make the slides. I can read the slides one or two at a time and spend hours on the internet feeding the interest they spark within me. I can read them two at a time, and give in to the sleep, and wake up and pick up right where I left off.

I hoped to be a doctor, but I look at myself now and know I will be lucky just to survive this three year degree. So I… Let. Go. (Not sure I saw that one coming either. Well… I sort of did, but denial is my best friend and I didn’t expect it to back away so easily). Maybe someday I’ll be fixed enough to complete a medical degree, and then I’ll be living the dream. But for now, that door has been slammed and locked and there’s a tiger on the other side of it. This degree, and the city of London itself… Has opened up so many more opportunities for me. I considered medical/ science journalism when I was trying to pick a degree. From time to time I consider throwing everything away and pursuing writing more seriously, especially when I’m asked to write for magazines or whatever. I occasionally consider pursuing my art as I’ve been encouraged to do (although  I still can’t comprehend that people keep offering to pay me so much for a sketch or whatever). I consider taking my camera and watching the sun rise over the city over various months, because I LOVE photography (which became my love when I lost the ability to draw). If I make it through this degree, I want to move to Cornwall and settle down, maybe do a graduate degree in Plymouth or even stick around in London. Maybe go into research or journalism. Maybe attempt to get a PhD. Maybe publish some of the stuff I’ve written in between. Sell t-shirts with health puns on them. Have an awesome summer. Live.

I want to live again. I want to feel alive.

“Find the place inside where there is joy, and the joy will burn out the pain.” – Joseph Campbell

Thank you to the person whose comment on my previous blog post put me in the sort of mood where I was in a suitable place to realise that all is not lost (and also caused me to nearly drown in a tidal wave of feels). And thank you to my incredibly talented fellow fish (long story – we promised each other that through all the rubbish we would “Just keep swimming” – yes that is a quote from Finding Nemo and yes we are making plans to go to Brighton or Bournemouth and go see the new film and then go to an aquarium and find an actual Dory…) who mentioned me in her own blog post earlier (which I will link to at some point), and said the sweetest, most incredible things about me which were not deserved at all but also induced considerable feels.

Also, thanks to my cousin, who is 13 and earlier sent me a piece of school work she had done at some point about her inspiration – me. I nearly cried. And then I… Nearly cried. And then I… Nearly cried. And then I asked her if she genuinely thought the things she had written, and she started telling me how much I’d inspired her and stuff (which is unusual because me being ill usually irritates the people I live with, so for a family member to find me an inspiration because of it and my desire to become a doctor and “help other people and support them”, as she put it, was unexpected). Somehow it meant more coming from a 13 year old. Someone looks up to me. Actually looks up. To me… Thinks that I am genuinely inspirational enough to tell other people about. And I mean… I don’t see why she thinks that, but how could I ever want to be anything more than this? Than what I am right now?

It all made me feel like someone… Worth being. Just as I am. So thank you all.