For a long time now I have been forced to live a double life. On one hand, I am the undercover ill person, trying to protect and shelter people who know me from the time bomb that nobody currently knows how to diffuse in an exhausting charade that I occasionally lose the ability to maintain (and then outwardly plummet to the place where internally I never leave). On the other hand, on this blog, I hide very little, I am outwardly myself, I admit when I am not ok and I fall apart behind the shield of my computer screen and I say honestly how I feel with no worries about who that knowledge may hurt, the broken shards of who I am powerless to do any damage when simply projected onto the screens of people who mostly, have never seen my face. I am two people.
The trouble is that nobody really knows who I am any more. The two or three people who read this blog and know me outside of it will only ever encounter “protective me” or a me that is so broken by the conversation topic of myself, that she smiles and changes the subject without ever answering the question and blogs everything out afterwards. I hate the words, “are you ok?” No. I am never ok. It is the nature of me. Don’t remind me. I’ll tell you when you need to panic, I was enjoying not thinking about things, just leave it. What do you want me to say? I don’t trust. I can’t. A significant part of me fears concern because good intentions hide behind it, and good intentions lead people to hurt you like you’ve never been hurt before because they think they are helping. Help scares me now. Help left me ventilated and intubated in an intensive care unit when I’d only gone for a couple of hours of testing. Not trusting anyone or anything (other than my dog) was always such a lonely way to live, until I discovered blogging and the beauty of time to think about the words I let out into the world – a space to be who I needed to be, to let out my feelings and confess to the PTSD and explain things I could never explain to people in person, especially not under the gaze of a pitying look.
Take my family, for instance. They have no idea how unwell I am or have been. Most people have no idea I was in intensive care last week. My parents play everything down and then my relatives don’t understand why I find things so difficult or say I am too unwell to go for a walk or play on a trampoline or whatever (note: I go to all my hospital appointments alone 45 miles away from my parents and I’m 20 years old, so they could just ask me, and then I can tell them. But, for reasons you are about to learn, I can’t just go ahead and tell them).
My parents control who is told what and when (not so much control… Limit?) My mum always insists that my grandparents are told before anyone else, as if they hear it from me or from anyone else they get pretty outraged at my parents for not telling them first (this is awkward. We have to phone them because my grandma hates technology. They are out a lot… My mum doesn’t like to phone because it’s a faff…). But my mum leaves it days. Sometimes she doesn’t tell them at all because “there’s no point worrying anyone over a few days.” In fact, they probably know about 50% of my recent admissions, and they usually find out afterwards or towards the end. This means that I also can’t tell any other family, and that I especially can’t post the name of a ward and its visiting times onto social media in hope that someone might come and visit me (until my parents say I can, which is usually after the grandparents know, which is usually after my mum can face telling them, which is usually at a stage where saying anything at all is pointless because I’m fine and almost home). It means I can’t ask anyone to be there – not even the people I want to be there the most – my closest friends and the relatives I would love to be there and who even live or work in London but have no idea I’m in hospital. They remain oblivious and I want to climb onto the roof of the hospital and scream for them all until my voice is gone and I’ve cried every tear I have to cry in anguish.
They see me after the event, when I walk back into a lecture theatre, or at the next meeting or (rare but awesome) family gathering. They cannot comprehend how unwell I’ve been, and when they ask how I am I say “fine” because I don’t want to drop my parents in it. They see me able to function and they are blissfully unaware of what I have been through, which I like… But when they ask me what on earth I’ve got to be unhappy about (even false smiles eventually fall away, and when I forget people are around my struggling self shows instead) I wish they knew. I wish I could talk about it with them and offload. As they tell me I’m not dying and things could be worse, I silently agree but I realise they are completely clueless. I want them to know how close they came to losing me, how lucky I am that death was not at home when I came hammering on his door, how superhuman my body has been. I want them to know the conversations I had, to know that doctors thought they were going to lose me, to know how serious things are and were and what I am up against and how I feel… And how much I need and would appreciate their support, their presence.
I wish they saw me laying alone while other patients’ friends and relatives crowd lovingly around their beds with get well cards and magazines and cuddly toys and takeaway milkshakes from their favourite cafés… I wish they were there to stop the pain of having to be the odd one out then. I just want someone to sit with, someone to be there. Until my fellow third wheel, I didn’t realise what a difference it made to my mental health (while in hospital because of my physical health – declines the two inevitably come hand in hand, declines in the former/ emotional triggered easily by the latter/ physical)
But that side of me is not for them. I must let it out elsewhere, where they will not find it.
It is exhausting, maintaining the charade for the family I long to be close to but who are held at arms length by my parents lack of communication and my inability to open up and lack of permission to share stuff until it is far too late and therefore futile to do so. I want them to be there. I want to feel close to them. I want this to stop. I am so tired of it, of having to hold everyone else together and shield everyone. I want to tell them everything. I want to give them the opportunity to feel and react and overcome it and to see me for who I really am and appreciate what I am going through. I want them to understand why I can’t do all of the things I used to and that I’m not lazy when I say I can’t do stuff. I don’t expect get well cards or presents or random surprise parties in hospital cafés. Expecting people to turn up and stay for more than 20 minutes (other than my uni parents) seems to be far too much. But watching classmates walk right past the hospital you’re in without even pausing to glance up… That hurts. Knowing your relatives and a godparent are somewhere near but have no idea they are needed… Sucks.
I don’t like the drama and the false sympathy that results, but I want to post on social media and make people understand… And at the same time I am embarrassed, I want to hide my health; I am ashamed, I want to protect them, I want my health to ruin as few lives as possible (preferably only mine) and invade nobody else’s thoughts because I know how awful it is to live under the weight of all of that knowledge and all of that worry and uncertainty.
Behind the scenes, I am the person who writes this blog. I am pathetic. I break and I get up and stumble on and break again. I struggle and I fall apart and I try again and repeat the cycle over and over. I give in and give up and then get up and go again. I let my weakness show. I cannot cope alone and yet everywhere but on this screen I shut myself away. I am scared in ways I cannot let them see. I swallow that fear and carry on in ways I do not understand, but do not need to. I am no my knees. I am crying out. But I do not let them hear. I cannot let them see. I crumble, and I fall, and I reach out but not at the people who would be there given half a chance (or would they, because even some of my closest friends and my parents are sick of my health issues now).
It’s a lose lose situation, I sometimes feel. And then I get comments on these posts that pick me up and give me the shove I need.
I live as two people, and I hate it, and I’m tired of it, but I can’t change it. They have no idea what I am going through right now, and I thought I liked that. But now I just want them to know. I just want people to be there.
“I can hold my breath
I can bite my tongue
I can stay awake for days
If that’s what you want
Be your number one
I can fake a smile
I can force a laugh
I can dance and play the part
If that’s what you ask
Give you all I am
But I’m only human
And I bleed when I fall down
I’m only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
‘Cause I’m only human
I can turn it on
Be a good machine
I can hold the weight of worlds
If that’s what you need
Be your everything
I can do it
But I’m only human
– Christina Perri, Human
And now that I’ve said it, now that it is off my chest, time to get over it and move on and keep on keeping on as uni dad would say (he gave a talk in a local sixth form two days ago according to my friend who lives right by where he was… Weird…). I’m weird like that. I blog it all out and then it isn’t stuck inside of me tearing me apart and somehow I can carry on again.
No way but through, I guess.
(Three posts today, really sorry, I clearly had a lot of thoughts to get rid of haha)