I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.
Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you.
My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted.
I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again.
I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.
The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).
I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long.
I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow.
Still, no way but through.
I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again.
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.
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).
“There’s a pain in my heart and a pain in my chest
I wanna feel human again
There’s a pain in my head and I’m losing my breath
I wanna feel human again
Kodaline, Human Again
As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.
(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)
In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).
I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.
Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.
After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.
I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.
I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.
To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.
So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)
But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)
“Falling in this great divide
The earth it splits, and my feet on both sides
Though my faith is shaky
I keep on hoping (keep on hoping)
Keep on hoping (keep on hoping)
When it all feels broken
Got to keep your hope alive Falling in this great divide
The earth it shifts, and I’m on the other side
And I swear the world is going crazy
But I keep on hoping (keep on hoping)
Keep on hoping (keep on hoping)
When it all feels broken
Got to keep your hope alive”
X ambassadors, Hoping
And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).
Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.
In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).
Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.
This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.
In some sort of superhuman feat, I woke up 12 minutes before my lecture this morning and six minutes later was leaving my room in a half-asleep sort of zombie state to go and listen to an hour of physiology. In my defence, we usually have those lectures on Tuesdays, and I had been up until 4am on the phone to my friend (more like BROTHER because we were so close) from sixth form. We hadn’t messaged for over a year, and he dropped me like a hot potato in our last year of sixth form when he got a girlfriend, but he’s broken up with her and he was in a bad place… And I just wanted to go back to old times.
I forgot how well he knew me. At uni I have to explain the past to people before they understand the way I am now, but he lived through the past with me, he knows me so well that it was spooky but SO NICE for someone to just see through everything and just know how I work and… Who I am (nobody here really knows, I put a guard up that I cannot take down, and I’m always away from them). We started off talking about how he was, then how I was, then we had a big long catch up and then we just ended up hysterically laughing for hours. We reached a level of immaturity that we both admitted we hadn’t been reduced to since we last spoke (and could not display around any other human), and it was amazing to be able to talk like that right away after so long not speaking at all. It was the familiarity my brain has been craving, it was like going back to sixth form, and we laughed and talked about all the funny stuff and how we used to drive our biology teachers mad by just laughing all the way through lessons. He wants to meet up over the Christmas break, and damn it I’ve missed his hugs. We are SO close that he was basically my brother. He always used to say he loved me like a sister, and his family are so nice even when we’d play darts and mine would bounce off the wall and nearly impale us all.
After lectures I did something I’ve been meaning to do for ages. I filled out an extenuating circumstances form to officially declare all the work I’ve missed. It was such a faff, but it’s not even that I’d been consciously putting it off, I just hadn’t been able to find any importance in anything enough to take action. I was kind of anxious that in putting it all in writing I was giving the university bullets to end my uni life with. But I missed a tutorial and still produced the essay that was set in it so… I feel like I’ve done myself a favour there. SC Uni Friend sat with me, and we had a fight with one of the many huge printing machines to make it photocopy the medical evidence I had to provide, but after an hour long battle with the entire process, I went and handed in the stupid thing.
And then I’m not really sure what happened. I went back to my flat and planned to wait until it got dark in the afternoon and go and see Kew Gardens at Christmas or something. I decided that I am going to go to the Hunterian Museum tomorrow (it’s a museum at the Royal College of Surgeons that is just FULL of preserved anatomy specimens and surgical equipment, including some pretty AWESOME and significant stuff) because going to the Natural History Museum yesterday made me realise that I was mostly specifically there to see the preserved brain and spinal cord, and I feel that now I’m all adult and anatomy obsessed, I should seek out a place that my brain will find as awesome and mind blowing as it used to find the Natural History Museum’s basic human biology exhibit.
One minute I was sat on my bed trying to plan these things… And then all of a sudden I was waking up feeling drugged and slow… and it was 7pm. So… That went to plan (not).
I’m trying to get out and do something every day because I’m mostly just trying to switch my brain back on and taking myself to places that I’m hoping will ignite some sort of ANYTHING. I don’t want to shut myself off and just stew in the stagnant state I seem to be stuck in. I’m just trying to figure out how to fully function again, because at the minute there is no importance in anything.
I realised last night when on my super long phone call, that this Tuesday was the first time I’ve ever missed a lecture just because I couldn’t find motivation or importance or… A care in the world. Usually the only occasion on which I will miss a lecture is if I physically can’t get out of bed. Although it’s basically a rite of passage for any student, it should probably be a huge deal. It means things in my mind are probably worse than I thought, because my reason for living and getting out of bed in the morning… No longer gets me out of bed. Honestly, for the last year and a bit, university has motivated me and been my reason for doing anything really. Not only can I now not feel any interest in what used to be at times the only and most important thing my life, but nothing matters. At all. And I should probably have some sort of feeling about that, but I don’t.
A lot of people I know are broken at the moment in the same way that I used to be. They are struggling to cope, but they can function. They are still stressing about things and worrying about uni work which means that they can still find importance in at least something. Buckling under so much stress and being unable to cope is where I was for a few weeks, and it sucked and I hated it and I couldn’t cope… But I could feel. Looking back now, I realise that not all hope was lost, because the fact that I was stressing about things (like uni… And then after a while not uni but just… Not dying) meant that I still attached some importance to them.
And I mean… I’d like to find that again.
I have an assignment due in tomorrow (I mean to be fair I missed the lab but I still have to do the lab report at some point) and one due in on Friday, and then another one next Wednesday along with a test or two that are happening online next week… I have NO notes (I mean, I have some typed notes, but I haven’t made them full sentences and stuff or handwritten them and they are only for about 5 weeks… out of 11…) and also… I haven’t started working or revising for ANY OF IT. And I literally have no feeling about it. It just… Isn’t even a thing to my brain. As coping mechanisms go, this one isn’t so great. It’s keeping me alive and on the planet and most of the time not overwhelmed (unless social interaction has to occur) but… It’s going to wreck my life.
I feel like there is a heaviness in my mind now instead of a void (numbness to me feels heavy and deadened, the void was just light and airy and there was NOTHING in there at all. I can think now, just. I can talk. I can respond. Not fully function, but respond, so the void is gone), which means there is some sort of feeling or thought there, and there’s now enough of that for me to be able to act normal. Words are just sounds, easy to make and harder to mean. I’ve re-learned how to plaster on a tone, and how to make it sound like I’m talking about something when I’m talking about nothing. It’s giving off an illusion that the few people I can deal with being around at the minute seem to have fallen for well. It isn’t healthy, it really is the wrong thing to do, and it means I won’t get the support I need, but it’s literally that or I can’t talk at all and my brain is just all ASDFGHJKL.
The last couple of days have been something comparable with the lovechild of a hurricane and a rollercoaster… on steroids. Life’s favourite time to kick is when you’re already down. And yet… the kicks don’t even hurt any more. Not at the minute. There is no capacity to hurt, and when there is, there is no capacity to hurt any more. I’m starting to vaguely feel – not fully and not properly, but at least a bit more consistently.
This is where I’m going to make a weird request, because (unusually) I remembered that a handful of people are going to read what I write here. Specifically, that concern is about the 2-3 people reading this who met me before they ever read any of these posts. If you met me before this blog existed… Please don’t read the rest of this post. Not yet, anyway. I kind of… It isn’t something I want people who know me like that to really find out in a post, I think? I’ve chosen not to really talk about it to people I know yet, because hey it’s probably nothing, and I know I can’t stop anyone reading on, and that asking you not to builds a whole lot of intrigue. But please hang in there for a while.
I mean… Now I continue, I guess.
I had a hospital appointment yesterday for a totally new thing. It isn’t new to me, but it’s the first time I’ve actually had it looked at. Long story short, earlier this year I started getting minor nosebleeds from one nostril. Then I noticed a small lump. The lump grew, the nosebleeds got far more frequent and much worse, and now there’s a constant trickle of blood down my throat and every hour or two, a red river all over my face. The lump now obstructs my entire nostril, is hard and has a bunch of blood vessels over it, and has recently changed in appearance. The back of my mouth has started to feel weird, and on the same side it looks a little different (like red and weird). I decided it was nothing, and certainly that something as pathetic as my nose wasn’t worth bothering anyone about. But I mean… It’s A LOT of blood now. So I went to see an ENT consultant, who was the first person I told about it to decide it may be a good idea to look at it.
He had an appalling bedside manner and was blunt and clinical and methodical, which I liked. He sat me in front of him and looked at it, without saying a word got some equipment and briefly explained what he was going to do before he stuck a camera down my other nostril and into my throat, and then looked into my mouth… And then we sat across from each other at his desk and he looked up at me and without any build up said
Unfortunately there’s no treatment option other than surgery. We need to remove the mass and the underlying cartilage. Do you have any questions?
Yes! So many questions! But all I could say was… Is that going to hurt?
It’s a something-I-can’t-remember-because-I’m-half-asleep-oma, he thinks. Now I mean… Part of me had been expecting this little lump to need to be removed, but a much larger part of me thought I was going to be laughed out of his office, or maybe he’d make it bleed and just cauterise whatever bled and send me home all fixed. I did not expect him to say that there was a whatever-it-is-oma with exposed cartilage that is on/adhered to the nasal septum. Like… Surely exposed cartilage should… Hurt? Anyway he wanted bloods there and then, and a CT scan ASAP. He said he’d phone with the results. But when we went to book it all, we said I couldn’t do the scan until I’m back from uni. The first day I’ll be back for is the 19th. The scan is the first slot they have on the morning of the 20th of December. That’s… A lot quicker than I was expecting them to arrange it.
My mum and I then went for lunch, because she said that this time I had been “ok-ish” to have around. I didn’t want to go back – the whole way there I was dreading it, and she didn’t really want me to leave either I think. It was nice. We stopped at a random pub chain and ate some super nice chicken. And then we drove back to Mile End. And I was in this car that I knew was about to drive right back to exactly where I wanted to be, but that I wasn’t going to be in it when it got there. My mum pulled up outside my accommodation, got my stuff out of the car, we said a brief goodbye, and then she was gone. I hate that there’s nowhere to stop where I live. Goodbyes aren’t proper.
I went back to my room, let the door swing shut behind me and… Sobbed. I just sobbed. Uncontrollably. The room was so isolated. So… Not a family home.
And then my mum called to tell me I’d forgotten something, and I couldn’t stand speaking to her because I just wanted to go back to my dog and stuff. Same Cardiologist Uni Friend called me up and talked to me for a few hours. My plan was not to talk about my stupid nose until I know about it for sure and stuff. Oddly, I’m not phased by the thought of surgery or anything. I thought I would be or should be, but y’know… I don’t know whether it’s because I feel so ridiculous about it being my nose or whatever, but this one just doesn’t feel like something to sweat over. If the lump is harmless or has the potential to stop being harmless or if it isn’t harmless at all, the treatment is the same – get it out. I’m up for that – just get the thing out. It’s annoying, more than anything.
But anyway I was crying and I was like I don’t think I can do this. I didn’t know how to deal with anything, even for a day. I ended up almost falling asleep on the phone to my friend, and saying stuff that made no sense because I was falling asleep, so I let her go and cook her dinner and curled up fully clothed to go to sleep. My sleep was broken, it always is, but if you discount the 17-18 times I woke up or got up to treat my health hiccups, I slept from 7pm round to 9am. I was so tired.
And then I went to my hospital appointment. And as I sat there by the Christmas tree waiting to go in, I checked my uni emails, for some reason. And they are STILL trying to find ways to kick me out. Except this one may work, but is also ridiculous. They are getting the national crediting body (external to the university) involved, because I missed lab sessions so they are saying I might not have demonstrated the lab skills needed to become credited as a biomedical scientist. So many thoughts. Firstly, we do the same procedures in every lab – spectrophotometry, micropipettes, serial dilutions… It’s basically the same. The labs I’ve missed… Some were on the computer, one the theory was done at home… I’ve done all the skills before. To death and back. In fact, I’ve probably carried them out while literally dying. Secondly, there are people on our course who have never been to a single lab because they can’t be bothered. A couple of weeks ago, someone asked us where we are meant to submit lab reports to and how we went about it, because, half way through the first semester of his SECOND year, he had NEVER been to a lab session. Thirdly, why did nobody tell me that at the end of first year?
As if that appointment wasn’t bad enough.
I walked in, and we started talking. And she told me this story about this boy who didn’t look after his diabetes and didn’t think it would kill him but was warned and warned, and then died. Except she didn’t tell it like that. It was more emotive. And I was like… I have so many things to be scared of. And I told her about my heart being more of a pain in the butt, and my kidneys being a pain in the butt, and how I hadn’t told anyone about either of those things. But somewhere before that, or maybe during it, I just broke down. I don’t cry. If I do, it isn’t in front of people. It certainly isn’t in front of health professionals. And I just couldn’t stop. I will elaborate on why and what I said at a later stage. But out 45 minute appointment ended up going on for over 3 hours. She pulled her chair out from behind the desk and moved it so our knees were almost touching, and she leaned forward and we just talked. About it all. About all the things I couldn’t face. About how screwed my body was. About what triggered my PTSD. About where I wanted to go (in terms of a treatment plan or whatever) and all I could say was I don’t want this any more. I don’t know how to deal with it all, I just can’t cope. And she’d stop, and we’d go back, and we’d go through a whole other thing like my weight loss or fluid retention or mental health or whatever else until we ended up right back at that point. She was patient.
Anyway. I got to uni campus at 2 and sat with Same Cardiologist Uni Friend and Italian Uni Friend (two people then knew I was back, which hadn’t been my plan). I had an assignment due in at 5 that I hadn’t started. I got quite a way in, and then my computer restarted and I lost even the stuff I had saved. Life isn’t giving me lemons, it is squeezing them in my cuts. It felt pointless anyway, in light of everything else on my plate, especially as all this work may literally be for nothing now.
I concluded that the only state in which to submit my assignment would be on fire… Because that way it could never be marked, and I’d save everyone else by destroying theirs too. I was just over half way through when the fire alarm went off. I sat there with less than an hour to go and 1/4 of the thing still to do like well at least if I burn to death they might go a little easier on me.
I was trying to care, and it just didn’t matter. Until eventually I started to focus on it instead of the everything else in my life, and putting the tiny amount of importance I could spare onto my coursework distracted me as we watched a guy try to turn his canal boat and have a crash in Regents Canal (right by the window).
I finished the thing on time. Same Cardiologist Uni Friend had to print it on her account because I forgot my student card. Italian Uni Friend had to staple it because I couldn’t get into the library. I submitted the thing, and then I stood in the middle of the emptying science building, held my arms up in victory, looked up through the opening in the ceiling of the lobby that showed the first floor lab, and just shouted (completely out of the blue, taking myself by surprise)
Then three of us went to Stratford Westfields, where I bought a large meal in McDonalds, accompanied by a free Crunchie McFlurry (because student perks) after I realised I hadn’t eaten all day and it was 6pm and I felt I needed something good after my day (not going to lie that’s the only reason I went). It was so cold out and I had only left the house wearing a jumper, so by the time we got there I couldn’t feel most of myself, my hands seemed to have so little blood in them they looked rather alarmingly alien, I was shivering violently, and got electric shock pains in my legs if I moved them beyond a certain point… So I bought a super cheap ski jacket… And 2 jumpers… And a Christmas jumper (all for under the price of a jumper in any other shop).
I went Christmas shopping and got three things for my little brother to make up for not getting him a birthday present. I bought myself a book entitled Death by Stupidity – 1001 of the most astonishingly bizarre ways to bite the dust because I wanted to feel better about the fact that I’d nearly died a lot and… It hadn’t been in ridiculous ways. It’s a pretty funny book (also, people die in really, rally stupid ways).
And then, because I felt like it, I bought myself a second dinner – an AMAZING pizza.
And now this post, that I mostly wrote on the other side of midnight, but that will now be posted today and probably make no sense (just imagine that every “today” is actually “yesterday” i.e. the 1st of December).
Tomorrow lectures, then straight to another hospital appointment, then straight to an assessed lab session, which means I’ll have another bit of coursework due in another week. One of my friends is already fully into a revision plan already. Everyone else I talk to only has a maximum of 7 weeks of notes (and that person was only that far in for two modules out of four). Everyone is as behind as me (I have notes in lectures until about week 5, handwritten final notes for… Week 1). And they’ve been out in the real world living life, so that makes me feel a bit better.
Whoa this is way too long. I’ll stop. Bye. I mean, it wasn’t even that bad. It’s just been full on, especially with starting to feel a little bit.
Time for another dinner. At 00:20am. Like I said, bite me.
“Anhedonia: The loss of interest and enjoyment in all activities that you once liked; the feeling of not caring anymore.” – Neurolove
In order to write the essay we were set by the medical school, I had to switch my brain on. I didn’t even need it to engage in university stuff, I was willing to settle for it engaging in anything, because then I’d have something to work with and focus and redirect.
I tried to engage my brain in essay writing, in anything at all; but in the fleeting moments that it would engage, the only thing it would latch onto was this aching conclusion that my existence needed to stop – without any of the thought before it or any of the usual emotional build up, I was at the final destination. I didn’t even want to take my own life, that isn’t what I wanted at all. My brain was just in crisis, not even crumbling on itself because it was never whole enough to do that, but it just didn’t want to do it any more. It wanted to die without dying. For no reason at all. And when I went back to feeling dead again, knew that I didn’t mean that at all. And when I feel proper emotion again, I’ll want to live so much that I’ll be crippled by the fear that I could so easily cease to do just that… And I will want some control from somewhere as doctors get involved in my life again and take all the control away from me, inducing mass panic. So y’know. It wasn’t helpful. Because I was trying to essay and swinging wildly between complete apathy and an overwhelming desperation to please just not exist any more.
The stupid essay doesn’t matter to me. It means nothing at all. It will be forgotten as soon as it is completed. It adds nothing to my life. It earns me a percentage on a piece of paper, or a latter grade. That’s it. And that isn’t what matters. When I’m laying in the ICU again that essay will mean less than nothing to me – the attention I give to it (when I can find it) will be a regret. Because I will have perspective and I will hate the fact that I lost that perspective enough to pin so much onto an essay.
I wrote that last night.
And then I woke up today. And things were different.
In three hours I was more productive than I have been in the entire last three weeks. I wasn’t enthusiastic or particularly engaged, but I managed to find a small amount of focus from somewhere. I found over 20 references and made notes from them all, writing down relevant parts in sections I’d made in my notebook so that when I came to writing the essay I just had to join the dots between the points basically. And I did more work then, in that short attempt, than I have for ages. I kind of got a little bit interested (and I mean a tiny, brief little flicker) in the use of beta blockers to treat cancer, and went off on a tangent researching the role of stress hormones and the mechanisms in which they promote cancer development. It is a very long time since I’ve had even a flicker of interest in anything, so this is mildly reassuring I guess. And then I sat and looked at my word count of 0, and tried to think, and my mind had forgotten how to essay. It couldn’t think. I didn’t really know what to do. I tried to blog, but there was nothing in my brain to let out. It was just empty, hollow, dead. My dog was laid next to me asleep so I just hugged him.
“I wanted to write down
exactly what I felt
the paper stayed empty
and I could not have
described it any better”
And then I started writing the stupid thing. One hour and 200 words and I was pretty surprised. I got a message from someone who I don’t want anything to do with at the moment due to their self-centredness and the way they make EVERYTHING a competition and always about them, even when they’re taking about you. I messaged my friend from uni who has the same cardiologist as me, and she said that my achievement was actually pretty decent, seeing as she’d managed 600 words in 3 days. At that point I lost the ability to essay, put on my wooly hat, and just sat staring at my screen for ages.
I don’t want to be writing about cancer at the minute. It’s ok when I’m totally a-emotional (I’ve decided that’s the perfect description for how I am right now), but when I do have emotions, it’s going to be so difficult if I start thinking about cancer. My dad’s ex-brother-in-law (who is referred to in our house as Unlce [dad’s ex-brother-in-law]) does have cancer. They got the biopsy results. A few weeks ago he got the all clear. Now, he’s still in intensive care with a tracheostomy but has been woken up. I feel like I shouldn’t even talk about this. But he’s such a nice guy. It’s in his voice box. They can’t do chemo or radiotherapy, they need to remove his trachea, he won’t breathe by himself again and he won’t be able to eat. Or talk, obviously. Life isn’t fair. It isn’t fair. It brought tears to my eyes when I heard. Which is weird. I think my emotions may have turned into ninjas, because I have these emotional responses (cry. I cry) without feeling anything at all behind it.
I feel everything at once.
Other days, I feel nothing at all.
I don’t know what’s worse:
Drowning beneath the waves
Or dying from the thirst.”
My dad has taken to doing this thing when I talk where he sighs in annoyance and visibly pulls a face or recoils a little and then looks away from me, makes some huge long pause and then talks, completely ignoring me. Or really curtly says “thank you” to shut me up. Not every time, but enough that I’ve noticed it and y’know… I’ve yet to have a feeling about it, but I’m sure whatever emotion it eventually throws up will be highly destructive.
This essay is due in tomorrow, except I have a hospital appointment in the morning and then from that my mum is taking me straight back to London, which I’m already starting to dread. I don’t want to leave my dog. My nephew is a complete narcissist. He was so rude and awful to my little brother last night I wanted to hit him (I’m super protective of my little brother, who wasn’t bothered). My mum is at her wits end over the way he treats her and lies all the time, he’s so rude and horrible to be around at the moment. My dad won’t discipline him at all because he worships him and wants to play good cop. It isn’t fair on my mum, who really cannot handle it but said that on the phone to my sister and said the opposite to me. I can’t handle this house. This essay can just go do one. Could cancer please just leave Uncle not my uncle alone? How, after hearing that, can I possibly give a crap about this essay? How? I should be freaking about going to a hospital appointment tomorrow and even that isn’t making me feel anything. And just as a tiny whip of emotion is ignited within me, I’m about to leave my dog and go back to the loneliness that broke me before I had any reason to break (I don’t have any reason to be broken now but…).
Basically I just want to set myself on fire, because I’m already watching the world as I know it burn.
One of the first things I did this morning was sit up and spit a mouthful of red froth into a glass. The blood at the back of my throat caught me by surprise as I laid there – a little cough and suddenly hello red stuff. I wasn’t too impressed at my body’s start to the day. It probably should have alarmed me, but my brain wasn’t really capable of that, even when reality tried so hard to coax some sort of reaction out of it.
I was starting to feel again, slowly. And then today I woke up… Hollow. Not numb, because numbness feels heavy and thick like a fog, but hollow. Last night my heart decided to have a little tantrum. My scientific, logical brain half kicked in, and then I just rolled over and went to sleep. I don’t really… I don’t really know what I’m doing or why I’m writing this.
My mind has been all over the place – mostly hollow, occasionally and very briefly sure of itself, and the rest of the time completely nonchalant and apathetic. I have an essay due in on Wednesday. I wasn’t in the tutorial in which the essay was set. I was in hospital for most of the time we were meant to write the stupid thing, and I really don’t care about it. Not a conscious effort to not care, or a deliberate dismissal – my brain just cannot engage enough for me to essay. Or to find any motivation or concern. But at some point I am going to feel all the feels again, and I might do my old familiar thing of throwing myself into uni work with such gusto that I completely lose who I am (which I guess is usually my intention). Or I might not. I might become this fragile thing that breaks in ways it can’t understand and falls apart under the slightest pressure. If either occurs, the last thing I’ll want is the university on my back. But I couldn’t even think I should do that. The first essay we were ever set on this degree course, I produced in one day. The day before it was due in, to be precise. So I mean… It’s achievable. If my brain could fill itself with something (my attitude has swung between a complete apathy and a momentary fleeting thought of come on then university, bite me – neither of which are helpful).
I literally have no idea what I’ve done all day. I sat down to work at about 10am, in a place where my mother could see me, to appease her and quash the flames of her judgement and frustration around my inability to university. I’m still sat here at 5pm. I haven’t gone anywhere else (other than to the hob to cook myself a stir fry for lunch, and go to the bathroom). Most of the time, my laptop has sat idle for so long that it goes to sleep. And yet, I am still staring at a blank document. I’ve done nothing. I haven’t listened to music. I haven’t sat on my phone. I think I’ve literally sat here all day with time passing and me totally unaware that it is. I think. Maybe? I mean, the TV has been on in the background, and I probably watched it at some point. But other than that and cuddling my dog, I’ve genuinely just sat doing nothing for hours. Which y’know… Usually puts some sort of thought into a brain. But no. A deadness kind of settled within me. I also seem to have no time for most people (there are a few exceptions… My hospital friend…) which makes me sound like an arsehole, but I genuinely don’t know how to handle that right now. I don’t know how to respond to stuff.
I really need to find some motivation or ability to care from somewhere, because I also have a lab report due in on Thursday, and no time to work on Wednesday because I have hospital stuff and then I’m going back to uni. I don’t want to go back to uni. I don’t care about this stuff. I don’t actually really seem to care about living until it comes down to the wire and I realise that in reality I’m so scared of not living that my mind just decided not to care at all so it wouldn’t break.
It’s weird. My brain knows how it should feel and how it should respond, and when it is able to, it projects that. My friend who has the same cardiologist as me (the one who stayed on the phone with me for 9 hours the other night and saved my life) sees right through this, but doesn’t know how to respond. She gets me on a level that nobody else healthy really can at the moment – we keep sending each other messages with the same thought at exactly the same time and it’s seriously freaking us out. She also seems to think I’m super wise, and says I’m “Like yoda but less… ugly.” Somehow I’m completely dead but managing to throw words at her that help her out and seem to make her think I have a way with words. I hate my brain for being able to do this. Why can it help… Well basically NOT ITSELF?!?!?!?! See now there, you’d think there was confusion or frustration. There should be. But there isn’t. But you wouldn’t know that, because my brain seems to have laid a defence mechanism on top of a defence mechanism.
My attempt to induce some sort of something yesterday was to buy myself a fluffy christmas onesie and a christmas jumper and my second new wooly hat in two days (I love hats. It’s a thing. I’ve been wearing a bobble hat all day). It didn’t induce anything other than a sort of screaming sound from my bank account as it haemorrhaged money. I think maybe going for a long run might sort of fix this, because endorphins bind to the same receptors in the brain as opiates do (so a runner’s high is a genuine thing). If even endorphins cannot induce some sort of something, then I’m pretty messed up. I say this, but I don’t have any motivation anything to even put on some running shoes and go for a run. Plus, my heart seems to be stressed out enough by me sitting down at the moment, and I’ve started to retain water like a pro.
So I mean… Basically the conclusion to this complete awful nothing of a blog post is that I don’t know what I’m doing and I don’t know what to do.
Well. This post was about as productive as my day. I might not post it. I might delete it. We’ll see, I guess. This may be the biggest pile of junk I have ever written. If it had a consciousness it would be having an existential crisis in light of its pointlessness. I’m sorry. Thanks for reading it, and for the comments lately too. They’ve been… Pretty awesome actually.
I promise you I’m not normally this much of a complete arsehole. I’m just so dead inside right now, and I’m trying not to be, but y’know, there isn’t much of me that even seems to be capable of… Things.
Thanks for sticking with this. This post, this blog (for those that follow it) and erm… Yeah. I guess.
I am surrounded by assumptions and expectations that are incorrectly pinned upon me. There is this assumption that I’m able to cope, that I’m ok. There is a huge expectation of me to start catching up on university work and be able to do so. People assume that I’m better and that I’m out of the woods. It’s all so… Far from reality.
On Thursday (after a sleepless night), I went to a hospital appointment where nobody seemed to care about the emotional impacts of my physical health hiccups at all – not even the psychologist who saw me in clinic and decided to join the appointment. I was alive (just, and not thanks to them) and that was enough. It didn’t matter that I had so nearly died. It didn’t matter that I was scared. I tried to talk about how I felt and the silence and expressionless faces told me that it didn’t matter there. The psychologist said it was such a huge deal and a big change to see me engaging with treatment. I found this ironic, seeing as the people sat before me were part of a healthcare team that totally bailed on me in February, refused to try anything else, and basically left me for dead, therefore burning any bridges I would ever build past and present. In my brain the whole appointment was a test that they spectacularly failed. After so long of them not caring, and me not being able to face appointments, I was totally overwhelmed when they just assumed that I was fine with everything and ready to engage now and booked not one, but TWO appointments for next week. I don’t know why I let them just sort of spring this on me. I was so overwhelmed I just went with it. But no. I should probably cancel those. Because they are… Nope. Too much too soon.
I left, feeling smothered and kind of like a caged animal, and I walked past campus but refused to take a shortcut and cut through it. I couldn’t face uni… And yet, I grabbed some food, and went back to my flat, and then headed onto campus for my lab. IT was a mistake. It was too soon. I couldn’t people. I was hugged. People who had no idea I was even in London were happy to see me. It overwhelmed me. WR Uni Friend knew the state I was in but didn’t know what else to try other than normal conversation and that… No. First my voice was deadened and monotonous, and then I just couldn’t talk at all. I withdrew. My mind crumbled, although there was nothing really left to fall apart. I switched off. I was exhausted from being up all night. At one point the module lead for that lab walked through (the lecturer I’d emailed a few weeks ago from hospital, who responded amazingly), he leant down to my level to talk to me and told me I had e legitimate excuse for missing assessments and stuff and would not be expected to catch up on the work at all. I said I’d missed so much and didn’t want to get kicked out and would really still like to do the work, and eventually he agreed that he would mark it for feedback but wouldn’t put my grades on the system.
My personal tutor was running the lab session. I was emotionally overwhelmed and physically exhausted and I fell asleep. First I just curled up on the desk, my mind in turmoil, completely overwhelmed, and I wrapped my arms around my head just to block out the world. And my tiredness took advantage of the darkness and the quiet. I was woken by her calling my name. She told me that if I was going to be there the least I could do was make the most of being in the lab. She didn’t talk about why. She wouldn’t go there, that’s beyond the boundaries that were set out to me last year. My friends were kind of shocked at the lack of support they thought they witnessed, but I was so scared to tell my personal tutor I’d been in hospital that I just didn’t. Uni aren’t supportive, so my disability advisor and the one helpful lecturer are the only people who know. Anyway, I removed myself from the room. I went into the toilets and messaged my new hospital friend and she just got it, and we just messaged.
I phoned My Fellow Third Wheel after the lab. He didn’t know what to say so he made things a little worse. I got on the tube to Embankment so that I could go to McDonalds along The Strand. In doing so, I saw the Christmas lights there.
This is significant, because about a week ago I got a flashcard and made a list of all the things I want to do in London at Christmas time before I y’know… cease to exist (I was trying to give myself something to… Something).
My list included things like:
See the Oxford/Regent/Bond/Carnaby Street Christmas lights
See the Covent Garden Christmas decorations
Go to Leicester Square
Go to Winter Wonderland in Hyde Park
Wander around the Harrods Christmas section (can’t afford anything but we used to do this when we were younger just for a day out)
See The Strand Christmas lights
See the Trafalgar Square tree and carols
Go to various Christmas markets
Go ice skating at The National History Museum or Somerset House
Anyway, from The Strand, I got on a packed commuter train from Charing Cross, and went to Sidcup. I saw Auntie Godmother and her family, but I was hollow and beaten and I just wanted my dog. I had dinner, had a long chat with my eldest cousin where I actually felt like a helpful human being… And I just felt part of a family. They were compassionate and understanding and they weren’t angry at me in the slightest. And then I went back to the house where I feel like a pain in the butt. But I was granted by the wagging tail of my furry rock, and I loved the fact that he couldn’t stand the thought of being apart from me, because he just made everything feel ok. He wakes me up when I’m unwell because he seems to know what’s going on in my blood before any test does. I feel safe sleeping when he is around. I’d been away from him for one night, and in that one night I nearly died and didn’t know until I happened to check by chance. I wanted the safety of his nose. My mum told me this was stupid, that I couldn’t rely on a dog. She seems to forget how many times he has saved my life. So I wanted my dog. I didn’t want to be with my family because they really aren’t good for my mental state right now. Remember this. It becomes relevant later.
I woke up at 1pm the next day, having spend the night with a chocolate labrador curled up in bed with me using my ribcage as a pillow, staring up at my face as I drifted to sleep, his tail thumping against the bedding each time I opened my eyes or moved my hand on his fur. I was at the stage where I was starting to switch back no mentally but couldn’t deal with my health, so was just… Not. I was treating myself and taking my medications and everything, but I wasn’t consulting anyone or checking my blood glucose levels or monitoring the acidity of my blood or going for any blood tests (I have the stickers for a bunch of blood tests I am meant to go and get. No.). I can’t throw that back into my brain without breaking down again. Breaking down. Is that what this is? A mental breakdown? It’s an acute deterioration in my mental health that I’ve never experienced before but is that… I mean… Am I broken? Anyway, I can’t stand to see bad blood results or have them told to me so I’m just not letting those blood results exist. My way of dealing, no matter how wrong it may be. Wonderfully oblivious to how bad the situation is, just like everyone around me who seems to think I’m better. If they get that peace of mind through ignorance, then so do I. Right? Wrong. Stupid. No, that’s not why I did it, it’s just what I use to tell myself this isn’t so bad.
I spoke my philosophies about what is really important to Uni Pal, and she, like my friend who saved my life with a phone call, told me I need to write a book. So all I did yesterday, all day, was write out my thoughts on that. Not even 2,000 words. All day. That’s all I had to show. But it is an entire something more than nothing.
I heard a phone call. Nobody thought to bother me with its contents because nobody thought I should care. Nobody thought I had any right to. My nephew did, because it was his great uncle. My sister was on the phone, it was her uncle. My dad was cut up – it was his ex-brother in law, and they were close. But I wasn’t allowed to be. He was assumed to be nothing to me. But this guy, when I met him when I was younger a couple of times. He included me. He made time for me. He made me feel part of a family that wasn’t mine. He talked to me, and he gave me this big long pep talk about how blood didn’t matter and people who thought it was all that did were people I didn’t need in my life. He’s in a coma. He has a tracheostomy. I learned that in one overheard bit of the phone call. Nobody would tell me anything. I waited until they talked to my nephew.
Turns out the uncle that isn’t mine to call uncle has a huge tumour in his throat and couldn’t breathe. They think his cancer is back. He did so much for me in terms of settling into the new family that formed when my parents cemented the joining of our families by making my little brother… He’s such a nice guy, and he lives all the way over in Canada. I thought that I should feel stupid and guilty for being so concerned for him, I thought my family would be angry and they did get a little snappy at me because they don’t see why he should matter to me. But I remember a talk he probably doesn’t even remember having with me. And it meant a lot. Nobody would tell me anything. They were confused as to why it even mattered. And then I tried to figure out how I felt about the situation, but I couldn’t even get upset or hurt because I COULDN’T FEEL EMOTION again.
So I mean… I bought myself a wireless printer online because it was less than half the full price thanks to black Friday deals. I walked to the shopping centre near my family’s home with my nephew and we nearly got locked in WHSmiths. I bought stir fry and loads of soft drinks and fancy fruit juices (apple, lime and mint anyone??) and then I bought myself some study incentives – flash cards and a very cheap but new fountain pen. Turns out the fountain pen made my writing SO MUCH neater (I write with my left hand after my dominant hand was half paralysed by some surgery, and usually have to write half a page of random letters before my left handed writing is neat). I sat with my nephew and brother and they wrote with their non-dominant hands too, and then got annoyed that my left-handed writing was neater than their dominant hand’s writing… And then we just sat and talked. Until 11pm.
I got out stuff to study because I felt like I should but didn’t care but don’t feel pressure but sort of know I probably should. I wrote the title Time To Attempt To Uni and ten minutes later put away my study stuff, with my brain all ASDFGHJKL, having written three words half way down the page: yeah ok NOPE.
My brain just cannot even is not ready nope.
I am trying so hard to get back to normal and I think I keep running before I can walk. Even tiny steps are too much. Asdfghjkl
Yesterday I finished re-reading one of my favourite books. It was a book that opened my eyes to a whole new level of understanding about the human mind the first time I read it and made me shout YES at the pages a few times, and it is a book that I hoped would provide answers to me in my deadened state when I re-ordered it a few days ago (It’s a non-fiction-but-kinda-fiction-because-she-made-up-the-cases-from-her-experiences book called The Skeleton Cupboard by the way).
As it did the first time I read it, it really helped me to evaluate myself. I’m not stupid. I don’t need a therapist to untangle everything and find the root of my issues. I have an analytical, logical mind which is fully capable of identifying the roots of its issues. I often found myself several steps ahead of the psychologist I am meant to see about the emotional impact of my physical health, and she often said what I already knew, but in a patronising, dumbed down way. I’m not one of those people who has no idea why I’m a mess. That’s not what I need help with. I know how an I know why. I am entangled in the roots of my issues, and what I need is a weed whacker. I need help with the coping, the fixing. That’s what I don’t know how to do, and that’s where the frustration lies.
I really don’t want to go back to university. I looked around myself last night and I just didn’t want to leave. I don’t want to carry on with this degree at all. I just don’t. I don’t know how. And when I jump back in to uni… Well, I was already drowning and breaking under the work and the pressure… And now with over a week’s worth of work to catch up on (on top of everything I already had to make up) I will be so out of my depth. I’m only going back tonight so that I can go and see my nurse tomorrow morning. A night alone. A night without my dog, who is the only living thing that I want to be around at the moment… A night alone with thoughts that I can’t handle… It’s daunting. I think the expectation from my family is that I will go back to uni. I have a three hour lab session tomorrow afternoon, and if I’m in London I can’t not attend it. If I miss another, the uni will probably push me to drop out again (even though I could just do the lab report from a set of model results). If I do the lab, then I will have a piece of coursework due in a week’s time. Mentally I can’t cope with that at the minute. I can’t think enough or focus enough to work. I can’t think enough or focus enough to function. Before this hospital admission, coursework was already breaking me. Now… In this mental state… NOPE.
I haven’t told any of my friends that I will be going back tonight. They don’t understand how I am right now. They’re far too optimistic and… Fantastically oblivious to what I’m going through. The way they act shows me they have no real appreciation for how broken I am either physically or mentally, which is not their fault at all. It isn’t plastered across my forehead, but some of them think they can relate when they really can’t and that makes things really difficult for me. Even after I explain that I can’t face talking or anything in my current state, they try to have normal conversation, which I look like I’m capable of, but at the minute I’m not.
Right now I feel like I have
“the appearance of a human being, but nothing more.”- Tanya Byron, The Skeleton Cupboard
I’m not saying this to be horrible or trying to be awkward. I want more than anything to be able to be there for my friends and support them, but their lives are so wrapped up in uni (like mine was a few weeks ago) and they project that stress onto me – they talk about it, they expect me to care about work and assignments and worry with them, to validate the way they feel so they aren’t alone in it. And I can’t right now. I have no interest in hearing about coursework or trying to help them find answers to the questions, and they cannot detach themselves from that stuff because they don’t have the perspective that my crappy health has given me (interestingly enough, their latest lab session seems to have been measuring insulin levels, which is kinda ironic). I’m not explaining it right because I sound like an ungrateful idiot. I just feel so disconnected and stupid when I’m around them. They are normal. They are happy, and in some cases not so happy and want me to help them fix that. I can’t cope with either of those things. It overwhelms me, just at the thought of being around a group of people or a friend who is happy to see me makes my brain all asdfghjkl. I can’t deal with my own dampened down emotion right now, and I don’t seem to be able to deal with anyone else’s either.
“In familiar places and with familiar people, I am feeling lost and overwhelmed” – Tanya Byron, The Skeleton Cupboard (Ok so this was a guy talking about the early stages of dementia, but I feel the words can be adapted to explain how I feel about life right now).
At the minute I’m home alone with my dog (who used me as a living pillow last night as he slept in my bed with me). I’m waiting for My Fellow Third Wheel to arrive, because even though he’s miles off the mark this time in terms of understanding what is going on in my brain, he understands more than most. He isn’t emotional. He’s super calm and rational and impossible to panic. He was going to visit me in hospital. but when he found out I was back in Kent he said he’d see me yesterday (but then he was busy so…). He has promised me a long hug, and he’s going to buy a load of food and we’re going to sit and watch films or The Grand Tour Episode 1 (which I’ve already seen but he hasn’t). He’s there. He’s there in a way other people aren’t. No emotion, no skipping over whatever I just said and trying to have a normal conversation which then kinda totally shows he hasn’t understood what I tried to tell him. He tries, and he gets it wrong sometimes, but I am getting it wrong every time because I’m stuck in this rut. He said we can not watch TV, that he will sit here and I can throw all my s**t at him and let’s hope some of it sticks (which I thought was a rather funny way of putting it).
He knows that what I don’t need right now is to be told I’m not broken. Why do people do that? You take a huge step and admit your vulnerability, and they throw it right back in your face, dismiss it like it can’t possibly exist and you’re an idiot, and tell you that you’re not broken, you’re ok, you’re strong, you’re a fighter, you‘ve got this… Like… Like you’re not allowed to break. Like you don’t know yourself. They tell you that you’ll get through it and then they dismiss it and are all so I went to the shops yesterday and got a sandwich for 10p how ridiculous is that?! Instead of offering you support when you so badly need it, they kid themselves that you’re fine without it, probably because they don’t know how to offer it. But telling someone they’re fine or they’ll be fine when they have never been further from it is not… Helpful. It’s what made me withdraw. I kept getting messages like that. I kept having conversations like that.
I don’t need to be forced back together into a functional human that is easier for people to look at. I need to disassemble myself fully in order to reassemble myself. And he knows I don’t talk. He knows I get lost in myself. And he knows where to find the parts of me that are left lost in my mind somewhere. He’s the kind of friend where we will both happily just sit in silence in each other’s company for hours. He’s happy to do that. So am I. We do our own thing but sat next to each other on the sofa, and just the company is reassuring. He is in no great rush to fix things. He knows it takes time. He knows that if he pushes me I’ll just break more, and I’ll stop replying to messages and avoid all contact with even him (one of the two humans I am currently communicating with, both of whom are chronically ill, one of whom – new hospital friend – is in and out of hospitals and nearly dies a lot too). He also knows that I don’t do this to be difficult.
(Now excuse me while I science). The frontal lobes of the brain are responsible for the things that make us human – logic, rational thought, our personality, motivation, speech production, judgement, emotion control, social behaviour, problem solving… basically “higher cognitive” functions – complex thoughts. The prefrontal cortex (behind your forehead) is a part of this area of the brain that is linked to thought processing and personality and… stuff. Now let me introduce you to the Limbic system. That’s pretty much everything in you that is innate, the stuff you can’t control – heart rate, emotion, memory formation, hunger, thirst, pain, blood pressure, arousal… I sometimes refer to the primitive animal inside my brain that is reactive and defensive and behaves like an instinctive animal… That part… That exists. It’s the limbic system (the link has a big scientifically worded explanation for anyone who cares about/understands what it says). It’s the part of you that does whatever has to be done to stay alive I guess, it’s the animal part of us. Sometimes when people are super traumatised emotionally (or when they get stuff like dementia/stroke/traumatic brain injury that physically impairs the functioning of their frontal lobes) their prefrontal cortex is just like SORRY NOPE. It can’t handle reality and thinking and processing that reality… So your brain just… Doesn’t. The bit of you that makes you human switches off, and your limbic system is left in control, with nothing to process or control the emotion or anything. We kind of revert to animal form, in a weird way of looking at it.
“my frontal cortex was shutting down. Soon I would only be limbic, running on raw emotion, and this was not a good place to be.” – Tanya Byron, The Skeleton Cupboard
This is what this book does. It reminds me of the logic that I have researched and understood in order to understand myself, and it walks me through my own mind opening doors and explaining why. The state I’m in makes no sense to me, but that’s probably because my prefrontal cortex is being an utter idiot. Knowing that, being reminded of how the brain can respond to huge emotional traumas (i.e. literally deciding not to human) it provided me with an explanation as to WHY the way I am feeling happened on a scientific level. And I like logic, I like being able to understand myself, so this was of some comfort. It helped. Only trouble is, I wasn’t running on raw emotion either. I mean right before I became emotionally dead, I was clearly totally limbic. I was in a constant state of panic, I was wired, I was shaking, all I could do was cry and panic and the emotions were overwhelming – fear, terror, despair, helplessness, hopelessness, wanting to fight, wanting to surrender, wanting to run, feeling caged… So many more feelings, most of which there aren’t even names for. Survival mode. That’s what it was. The animal was no longer caged, my limbic system was in control, I was in irrational, emotional, survival mode.
I felt so much all at once, with nothing to police those emotions or limit them, that when I listened to a wonderful human being die, my brain was like NOPE ASDFGHJKL QWERTYUIOP ASDFGHJKL ——–. And then I couldn’t think or feel or anything for days. I don’t know what happened there. I don’t know what my brain did with that one. I don’t understand how I’m slowly starting to be able to form half thoughts, but my emotions are still foetuses that refuse to mature or develop and are there but unseen – they could never survive or fend for themselves in my brain, and they don’t last for long when they do appear. That doesn’t make sense to me. Why are my emotions so far past their due date? Why can’t I feel stuff properly? Is that in itself a feeling? Why won’t it just all come back? Am I broken? Will I feel stuff again? Do I even want to think fully? Because when I think fully, I know I’ll melt down and go all limbic again. Because that’s what I do. I know myself, and hospitals and stuff like that just seem to overwhelm my prefrontal cortex a little – to the point that its logic deserts me. And it needs to process stuff before the rest of my brain will settle, even though each time I think anywhere near that stuff emotion just overrides logic all over again (there is very little of either right now).
See this. This is how I think. I don’t like not knowing things. I don’t like not knowing what is going on in my body or why it did it (seriously once I know scientifically and medically how I settle a little. Modern medicine tells us how, but we have no idea why. We know how disease occurs. Most of the time we don’t know why). I especially do not like not knowing myself, my own mind, the one thing that should make sense to me because… I am it.
“Welcome to the inner workings of my mind So dark and foul I can’t disguise Can’t disguise Nights like this I become afraid Of the darkness in my heart
What’s wrong with me Why not understand and see I never saw What you saw in me Keep my eyes open My lips sealed My heart closed And my ears peeled
I couldn’t stop sleeping. I felt sick. I was dizzy. I felt like death. My eyes wouldn’t stay open. My head felt weird. It ached, but not in a normal way. I just about made it upstairs, dropped my stuff onto my bed, and fell down on top of it all. I was dizzy but not dizzy – on the verge of unconsciousness. And I passed out as any level of consciousness I had been managing to cling to slipped away.
Inject. Pass out. Wake up. Inject. Pass out. Eventually I was delirious. And I couldn’t get up, I couldn’t move. My heart rate was HIGH. My muscles felt weird. Acidosis. Crap. Acidosis. No. Pass out. Wake up. Inject. Pass out. Consider options. Pass out before being able to form a full thought.
On went the cycle. Lose consciousness. Wake up delirious. Lose consciousness. Wake up. Drink. Lose consciousness. Wake up. Try to move one leg under the covers. Lose consciousness. Over and over and over.
Until I regained consciousness and knew I was on the edge of something disastrous. The level of acidic bodies in my blood was over 10 times the upper limit of normal. It had doubled.
I phoned my mum at 3am. She woke up. At first she was angry – angry that I was ill. She doesn’t understand the complexity of what I’m dealing with or the way I juggle my medication, so she criticised it. She told me what I’d been doing wasn’t good enough. She decided she could manage it, and pretty much demanded that she took control. And then I started vomiting, and the room was spinning, and I was laying in the bed as she packed stuff ready to drive me to London (she was going to grab some rest in my flat while I was at the hospital) when I lost the ability to move a muscle. She’d been telling me I couldn’t possibly be as unwell as I was saying I was, because my breathing was too slow. In that moment, breathing was way too much effort. I apparently became hysterical at the thought of going to hospital, sobbing and getting into a (mild for me) panic (I am not fully feeling, this was a subdued response from me, with not a lot of feeling behind it, but it was enough to induce tears). But I relented. At 5am, for the second time in two weeks, an ambulance was called for me.
The first responder paramedic that showed up was from a different NHS trust. He was really friendly, and he was just finishing his shift. He told me I was the first genuinely sick person he’d been called to throughout the entire night. He was kind and fatherly and he sat on the bed and did all he could. It didn’t take him long to call for backup. He stated the category of the call and then added, “Urgently please. This patient is… Very sick.”
There were no free crews. He didn’t want to wait and tried to find a way to get me into the back of his ambulance car and take me to the slightly further away hospital in Kent where my share is sort of cared with my main consultant for this hiccup in London. But my blood pressure was dropping, as was my level consciousness. I was drifting away before his eyes. He kept rubbing my foot and saying my name and I had less and less free energy to use to respond to him. My dog had enough energy for me and him, and wandered around the bedroom saying hello. He got many hugs from various paramedics, and seemed very pleased with himself.
My mum was stress vomiting every few minutes. She got angry at me. She shouted about my management of everything and then she acknowledged that it was not the right time and calmed before occasionally not being able to hold back her thoughts any more. She did however tell the paramedics that I have PTSD due to stuff that happened in hospitals, which was a first. Usually she’s very dismissive of it and doesn’t understand what a big deal it is, and says that in giving it a label I started to make so much more of a deal about it. So this… Mattered.
We ended up with four paramedics in total. The first responder and an older lady lifted me into a chair thing, and a male paramedic wrapped a blanket around me and sort of hugged me in the process. They wheeled me through my parents’ house and carried me down the stairs and out to the ambulance. My GCS (glasgow coma score/scale) dropped in front of them from 15 (fully conscious) to 10 (kinda not able to function), as did my blood pressure, which plateaued at 80/55. My heart rate was 130 laying there out of it, I was shutting down, I was cold. My kidneys gave up functioning.
By 7am, my morning had already involved a blue light ambulance ride, a battle to cannulate me, a paramedic lady holding my hand while I lay in resus with a reduced level of consciousness that rendered me unable to talk or communicate, but apparently still able to cry my eyes out. My mum had annoyed the paramedics, and they made it known. They spoke to her like they were disciplining a child.
They hooked me up to IVs and I began to improve. I quite quickly came around. And the crying intensified then. The crying was joined by shaking. I was in the scene from my nightmares. I was in the hospital that triggered my PTSD. It was in that building, under the care of my paediatrician (whose face I still see in my nightmares), that the very first events I ever had flashbacks to occurred. If he were anyone other than a doctor it would be emotional abuse, neglect. For a doctor it is malpractice, it was cruel. It killed me. He killed me. And I sat in front of him and told him that I see his face in my nightmares, and one time he told me he’d laid awake thinking of me too. He’d written a note pinned to my A&E file that he is to be notified if ever I am admitted. He instructed people not to treat me unless I was essentially… Dead. I was his personal challenge, a puzzle to solve. And he was far too emotionally involved. So I was freaking out as people found that bit of paper. I was freaking out because of where I was. Not fully able to freak out, because I wasn’t fully able to feel. It was more a superficial panic, it didn’t spread right to my core, it sat on the surface. It was mild. But I shook and I cried and I lost the ability to talk. And over and over I asked to leave.
My mum slept on the rail of the trolley in resus, using my big purple butterfly blanket as a pillow. I put my arm around her as she slept and played with her hair fondly, gently, afraid to do so when she was awake. I felt this urge to protect her in her vulnerable state. And she woke, momentarily exasperated at it all, at me… And then just exhausted. That’s what I do to her. I break her.
Then they moved me round to majors. For the first time in years I was well enough to be stepped down from the resuscitation unit to majors. And they put me in a corner by the window in what used to be the clinical decision’s unit. And I woke up, looked out of the window. And there he was. In his office. The monster in my head. Out in the real world.
I watched him sit there. I watched him, and I shook. And I prayed that he wouldn’t turn around, but I wasn’t fully feeling. I wasn’t able to freak out, and so I stared. And I got angry. Because how is it fair that after everything he did to me, everything he put me through – all the cruelty and the mistakes that he made that almost killed me and occasionally made me long for death unlike anything else ever had… How is it fair that after all that, he gets to sit in this building like normal and carry on like nothing ever happened? How is it fair that he can sit in that same old chair and casually eat a sandwich when I have spent hours shaking and crying in that building because of the things he did to me there. How is it fair? I concluded that I wanted him to hurt as much as he hurt me. I wanted his soul to die as he had killed mine. And I wanted to talk to him at the same time; I wanted to email him and arrange to meet so I might get some closure. He played god with my life and had no idea the damage he was doing.
He cared. Far too much. He crossed a line, but he was the boss. He’d sit and talk with me for an hour or so every day he was there. He treated me like a puzzle, a personal challenge, but he let me in. I learnt a lot about him. He told me about his childhood and stuff, and loads of anecdotes, until I trusted him. Until I told him about my own childhood. Until I reeled off my own anecdotes. And he supported me. He was there. And then he almost killed me. He threw the trust away. He saved my life a few times. He was so caring when I was found unconscious that the crash team thought he was my dad… But he did horrific, unspeakable things. He put me through hell. He wasn’t good at showing he cared, and so when I saw those pictures, it made me stop. Did he care? Why did he put them right where he had to look at them every day? To remember me? Because every time he saw those pictures he had to remember me. This is the closest I had been to him in years. We weren’t face to face, but we were face to… window?
I messaged My Fellow Third Wheel and my hospital friend and Uni Babe. My Fellow Third Wheel was not impressed with my old paediatrician. He called him a four letter word beginning with a c. My hospital friend said she couldn’t imagine how stressed I was. Uni Babe responded with a series of swear words, a statement that it was awful for my mental health and I had to get moved away from that area where I could see him, and shortly after I got a couple of messages from WR Uni Friend and Uni Pal.
“Hope you’re doing ok petal. Just letting you know I’m still around for ya. Don’t feel the need to reply, just letting you know I think of you regularly.” – Uni Pal
“Hey superhero just wanted to let you know we’re all missing you and hope things aren’t too sh**y right now. There’s definitely a sense of something missing without you here, but focus on feeling better xx”
“Also don’t feel any pressure to respond if you’re not feeling up to it, we know you’re not feeling great right now but we just want you to know we’re still here for you x” – WR Uni Friend
“You were in resus this morning, are you sure that’s a good idea? Is there a different hospital you can go to? This is your life in the balance. You may not care now but you will later, and we all care too xx” – Uni Babe
I mean… They’re trying so hard bless them. They don’t understand me at all, and yet they’ve figured out how to say… The right thing, I guess? When I was incapable of all feeling, this was useless, but now that I’m starting to feel very suppressed, fractional proportions of my former emotions, words like this mean something.
And then suddenly I was like a caged animal. I was far too close to him. I kept asking for a self discharge form but they freaked. They wanted me to complete the IVs. They wanted me to keep the line in. They wanted to send me up to a ward. But I felt better. I explained to my nurse that I was in the hospital that first triggered my PTSD, staring at the office of the man who had almost abused me in a way. He immediately shut the curtains beside me so I couldn’t see. He stood next to me, this freakishly attractive human being with hypnotising, piercing brown eyes, and he said, “Look, I’m here. We’re here. I’m here. You’re safe.”
And then he tried to make me comfortable and talk me down. He told me I had to stay for the IV to finish, and then I needed to go up to a ward. I asked him for a self discharge form. It was the millionth time I had asked. Nobody would give me the form.
I said you guys need the bed.
And he was all, Don’t think about that. You’re a patient. You’re here for a reason. You’re very sick. but when I looked at my blood results, they were at that stage normal for me. In fact, they were good for me, hovering just outside of normal parameters.
After I’d been laid there for 7 hours without seeing a doctor (other than the one who admitted me), which was quite frankly A JOKE, a doctor appeared (this is another reason why I avoid this hospital at all costs and hadn’t been here for two years. The negligence that has nearly killed me so many times. It’s old. It’s a stagnant swamp of nightmares. Unfortunately, it’s closest to my family’s house, so it’s where ambulances take me). He didn’t want me to leave. He admitted there had been multiple screw ups in my care and I’d been meant to be seen much much sooner. I’d had enough. My third IV was finished and I’d basically unhooked myself from it. I needed out. I was going crazy, but not fully feeling. It’s weird. It was rippling away inside of me but the tidal wave never broke. It was never a fully fledged emotion – more a deadened, half-hearted version of what should have been. But anyway, I demanded a self discharge form, which meant I signed a disclaimer stating that I was leaving against medical advice.
I thought this would make everyone cross, but the lovely male nurse understood. He tried to talk me into staying, he really did. But he was so kind and calm about it. He said if I got worse again I had to go straight back without hesitation. He wasn’t annoyed at all.
As I walked out, my specialist community nurse from London called me. I told her where I was, and what had happened.
I arranged to call my nurse back later. We ended up arranging to meet on Thursday. Yes, after months of cancelling all appointments, I’ve finally made one (I cancelled most of them for the next few months in advance). We spoke about stuff and I had a few moments of saying I couldn’t do it any more, and she told me that we’ll get there. She said it was a shame that this admission had broken me but it was also a good thing because I was finally letting them work with me. She said she was proud of me, because six months ago I would not have made that phone call. I pointed out that six weeks ago I wouldn’t have made that phone call. She laughed. We talked about serious medical junk. We talked about a letter for uni (if I decide to carry on). And then she said she’s spoken to Dr GiveUp (y’know, the guy who just gave up on me in February, I’ve probably referred to him as something else but hey) and he’s really pleased that I opened up to her, and is keen to arrange a meeting between the three of us so that I can talk to him too. I didn’t open up. I broke down. And I kept my cards very close to my chest. I don’t talk. I don’t know how. But I’ve not let these guys have any input since they basically gave up on me, so I think the occasion was rather momentous.
Anyway, my little brother went and collected a parcel that was delivered to me, and it contained additional copies of two of my favourite books,