Today for the second day in a row I returned to London, sat on the train form Sidcup to Cannon Street and stepped out into places I knew. Yesterday it was with my fellow third wheel, who had a hospital appointment in London (so we met afterwards, and sat under millennium bridge for ages just talking, then walked slowly along the North bank of the Thames – where we passed huddles of people playing Pokémon Go – strolling past the London eye all the way to Westminster and Big Ben, where we got the district line back to Cannon Street station and parted ways again). Today I woke much earlier and travelled home, to Whitechapel, to the hospital that’s saved my life far too many times over the last year, right by the medical school campus at which I am partially taught. It was exactly like that – like going home. It felt amazing. It made all of me happy.
Since staying with Aunty Cousin (who, along with being a blood relative, is my godmother) and her family (who also therefore happen to be part of my family) I have felt… Content. At peace, for want of a better way of putting it. I have felt accepted, and like I belong, and things have fallen into place from there onwards. It put me into an amazing place emotionally, especially after Aunty Cousin walked up to my room and sat on the floor for an hour just talking to me about everything I’ve been through with uni and stuff over the last year. I feel like I have a family now. She’s told me to call her if anything like that ever happens with uni again, not to shut down but to call on her and I guess potentially come and say hi. I’ve been overwhelmed by that feeling of everything just starting to work out. But home unhinged that again. Back to reality. With a bang.
I sat for an hour waiting for my appointment. And a standard appointment ended with me signing consent forms for surgery. “And while we’re at it we will fill and clean your teeth for you too. But there’s a risk we can’t save them.” And then on she went to the whole “We expect you’ll lose between four and eight teeth, but we will try our best to save them.” And for some reason, after everything I’ve been through in my life, it was those words and that conversation that had me almost in tears. I don’t want to have no molars. I don’t want to not be able to chew. Why did my immune system let this happen? Why have my health hiccups conspired to make a mole hill that suddenly became a mountain? How did I get such wrecked teeth between now and this time last month? Because my body is a complicated idiot, is why.
Going through the surgery there’s all the other stuff you have to go through when you have multiple hiccups. Like giving them the name of your other consultants so that the ones in charge of health problems that may make an anaesthetic problematic or dangerous can be contacted for advice. This involved a brief medical history of what I thought was relevant (basically what I was willing to admit). Which means that I need to be taken into hospital and stabilised before they will put me to sleep. I have to wait three months. I can’t not have the surgery, it needs to be done. I’m more worried about the fillings, about the not knowing whether those teeth are staying or going.
I left the appointment, and I paced along pavements that my feet knew, and I remembered the times I’d walked along near tears before, after lectures. I remembered the day I almost threw myself in front of a train. I remembered hurrying back to campus to meet a uni parent. I remembered walking out of the hospital on the other side of the road and just wanting to cry. I was defeated. I was done. I couldn’t deal with it. When was it going to stop? When were there going to stop being more things that I couldn’t successfully human at? What had I done? I must have done something to cause the latest thing, I must have exposed myself to some funny chemical in a lab or done something really obviously stupid… I wanted to run to campus and see if one of my uni-parents was present. I quickly crushed that idea. I wanted there to be somebody there, but I didn’t want to worry Aunty Cousin and it wasn’t the thing to burden friends with. I messaged my fellow third wheel, because he just understands stuff, but sort of also doesn’t. But he was busy. And the dam broke. The tears rushed forward to meet my cheeks.
Something happened, I’m not sure what it was. I would not let those tears fall. A few did. I held my breath, I caught the groan in my throat. I walked pavements my feet knew too well, along Whitechapel Road, towards university, towards home. I put in my headphones and I clung to the music that played in my ears, breathing slowly, exhaling shakily. I went to the supermarket. I wanted to buy pain relief, readying myself for the storm. I walked into the building with two hands on my eyes wiping away tears I could not contain. And I wandered around like a zombie, grabbing what I needed, and a pair of canvas shoes, and a rose plant to thank Aunty Cousin for letting me stay with her and her family (which is also my family because we share DNA). But I wasn’t going to stop. I sucked it up and I carried on. And by the time I reached the checkout at the end, after collecting stuff from the pharmacy, I was no longer holding anything back – I was over it, there were no tears left to attempt to fall.
I paid for my stuff and was walking out of the shop when I passed their huge island of magazines. I stopped. A thought flitted around my mind like a fly I couldn’t catch. It laid eggs and multiplied and it grew until every inch of my mind was infested. That’s it. I’m doing it. We’re doing it body. We’re going to run. And I tried and I tried to switch it off but that was it. Walking around I had been thinking of swimming, of training more often (admittedly properly training at all would be a start), of pushing a body that refuses to work with me until it learns that it is just going to have to make do. I pictured my appointment with me cardiologist next week, I had thought about it for a long while and decided I am going to ask him to help me swim again, plead with him to find a way.
And I have all the training plans (for swimming) written down in my notebook – hour long sessions, some longer, some many kilometres, but no sprints (my heart would never deal with that). The script is there and I just have to follow it. This is what I used to do when I was younger, mostly with running, but it gave me focus, it gave me purpose, it gave me direction. I decided I was going to swim as much as my body would allow. And suddenly that stupidity wasn’t enough. That unachievable aim wasn’t enough. If we’re taking a leap we may as well take both feet off the ground. Was all I could think to my body. If I was going to fall onto a bed of broken glass, it didn’t matter to me how high I fell from. I think I’d hit a stage of having enough and moved past it. I didn’t want to be a martyr to myself. I didn’t want to lose out on my passions and hobbies because my body says no.
I stood in front of the magazine rack for ages, talking myself in and out of the idea of even buying a magazine, knowing what reading them used to ignite in me when I was younger… Knowing there would be training plans to get me from couch potato to marathon runner, and knowing that the second I saw them I would be determined to see them through. I picked up a few magazines and put them back, and then my hands settled on the familiar title if Runner’s World, which said on the front “Run Yourself Happy!” and that’s exactly what I intended to do. Swim until I had some stamina, and then go for a gentle run. But I couldn’t stop there. There was another magazine I always used to save for – 220 Triathlon. I picked up the cover and saw there was a feature on triathlons for beginners. I’ve completed a triathlon before – not a major organised event, but I used to love swimming, cycling, and running – and so for charity at the age of 14, I ran 10.4km, swam 4 km (I was only meant to swim 1.5, but I did that quickly and so I swam until the person counting my laps got bored), and cycled 64km on the same day. I’d planned to enter an organised triathlon when I hit 16, but by that point I’d spent months living in hospital and all dreams of sport started to fade. I figured that I counted as a beginner now, so I picked up both magazines, spent an outrageous amount of money for the privilege of taking on their ownership, and made my way back to Whitechapel tube station, then to Cannon Street, and then to Sidcup.
And when I opened the running magazine I decided I have no excuse not to run. I read about a 23 year old who had been homeless, emaciated and addicted to drugs but who had used running to turn his life around and had set a respectable marathon time this year. I read about a deaf person who had started a running club for other deaf runners. I read about people who had weighed 24 stone and still decided they were going to run for three hours before work until all the weight was gone (which reminded me a lot of somebody else I know). And I thought Wow. And then I thought, what’s my excuse?
And the actual answer is that I don’t have an excuse, I have a legitimate reason why I should not even be thinking about running – my heart, the fact that my body runs on empty, the fact that two months ago I was in a wheelchair unable even to stand, that fact that if I walk too much in one week my blood becomes acidic and my body starts breaking down muscle and I cease to function and become unable even to lift my head off of a pillow… The other things. The fact that my health hiccups almost succeed in trying to kill me on at least one occasion every month, but usually more. The fact that I’m currently unwell enough to be in hospital… The fact that exercise is out of bounds, that last time I tried to run I ended up in an unconscious heap on the floor because my heart FREAKED OUT…
And yet all I could think was you’re pathetic, you have no excuse, you have it easier than these people. You have no reason not to run. You’re limiting yourself. Nothing is stopping you. You’re shameful. Stop sitting around dreaming of it and go and do it. Run. Do it. Don’t fear the fall just enjo the flight.
The trouble is, I’ve always been afraid of flying.
This time though, this time something in me finally snapped.
As I walked back towards Whitechapel station from the supermarket, I realised I was doing a walk I had done so many times before. A walk that I had done when I could barely walk, when I should have been in the back of an ambulance but chose to walk to hospital. A walk I had done to lectures that has wrecked my heart so much that I passed out upon arriving at the lecture and missed the entire thing… But it was a walk I should not have been doing. It was a walk I was told not to bother doing. And every time I followed that path to my lectures it was an act of defiance in the face of the people who had pressured me to give up on that attempt of my first year of university and try again next year (nothing would have changed, my health is on a downward spiral, it will not get better. Plus I’ve almost got a first so I think they were WRONG). And as I walked it again I felt defiant once more. Life was not going to win. I was not going to cave. I was not going to listen to the word can’t because two months ago I hadn’t been able to even stand alone and now here I was, walking; a month before my 20th birthday a doctor told me that the next time I met the grim reaper he would take me, and that he was amazed I hadn’t been taken already, and I made it past my 20th birthday, and here I am; they tell me not to swim, and I swam, and yes it wipes me out for two days afterwards and makes my heart freak out and all of me feel like death, but I swam. What do they know? I thought. There is no can’t this time. This will not get me down. I am more than this. This isn’t going to drag me down. Some surgery, potential loss of some teeth. A teeny tiny minor thing. Harmless. Just unpleasant. I’ve got this. I’ll get through this. I’m not breaking. I was broken a few minutes ago, but I am not staying that way.
“You’re not gonna break me, not gonna break me down. You’re not gonna break me this time around” – Jamie N Commons, Not Gonna Break Me (my headphones spat this song at me as I walked)
And I can’t explain it. It was a shaky strength, a quiet and uncertain power… But suddenly it was alive within me. I was defiant and submissive at the same time. It was not an overwhelming defiance. It was held back by the breaking parts of me that it was holding together. But a steady assurance in myself began to build. The tiniest breeze could have blown me off course, I felt hollow, like a ghost. But it was a ghost that refused to be beaten, refused to be downtrodden by it’s own mind.
Out of my little moment of patheticness something awesome did emerge. My friend happened to reply to a message I sent her yesterday just as I was about to get on the tube (somehow still connected to university wifi). She asked what I was up to, and I was desperate, I had no pride, I had nothing to hide, I told the truth – that I’d just walked through Whitechapel in tears. She told me to stay right there and not move and that she was coming. She was on the train to Stratford, which is only one stop from Mile End (uni) and she told me to wait for her. But that plan didn’t work out. I could barely stand as I was so tired and I had to go back to the house and I was carrying a bunch of stuff, so we are trying to arrange to meet tomorrow when I go back for another hospital appointment instead (this one is going to be very, very, very, very, very rough). I sent her so many texts thanking her and asking why she was so amazing. I was so confused that someone would drop all of their plans and just be there for me. I was blown away by such kindness. I couldn’t even… I felt all the feels. And just like that, my state of being ok was cemented as we started getting giddy with excitement over the fact that THEY ARE FINALLY GOING TO START RUNNING THE NIGHT TUBE NEXT MONTH – no more night bus nightmares! And normal conversation swiftly took place of our original topic. I’m like that. If I’m going to talk about something, I do so for as little time as I possibly need to, and then I deflect all conversation topics away from me, I wrap myself in normality and nonsense like a comfort blanket.
I might go swimming before my appointment tomorrow. It’s been far too hot on the trains and although walking is extremely difficult at the minute (my heart is getting particularly outraged) I do fancy a swim. A gentle one. I’m working on a very light training programme – I’m not going to dive straight into a run.
First I’ll do land exercises to build core muscles and stuff, then I will start to swim as many times a week as I can, gradually increasing the distance and time that I swim for, but not the intensity (I’m talking 3 hours to swim 2km kind of thing here); then, when I can swim 50m without having to pause and let my heart calm down in between, I’ll try to swim more lengths without stopping, until I can do 200m slowly and gently but without stopping… And when I can do that, and keep doing that, and my heart is adjusted… I’ll go for a jog through Mile End park.
And then I’m home and the world is at my feet quite literally.
For all of ten minutes today I was beaten. And I’ve no idea how, but five minutes later, I felt solid as a rock, grounded, ready. My headphones were in and I was sat on that train alone with my thoughts, and I would not let myself fall.
I could have been sitting on the ability to run without passing out this entire time (I highly doubt it). If this body is going to keep trying to break me, I may as well get something good out of it in return. And I am going to try and build up gradually, and try to do it as safely as possible, and I will ask my cardiologist for some advice and some help and some other consultants as well. But I already know that with or without their help this is happening.
Because this time when a doctor sat me down ad said that when there are other health complications going on “obviously there’s a risk you won’t wake up from the anaesthetic”… It got to me. It scared me. It shook me. And I don’t want to live like that. I don’t want to go back to living in fear of my own organs and blood and cells. I want to go back to loving life, to running away my stresses and swimming away my bothers and learning to fly on the wings of endorphins that sport sends my way. Things need to change. This cannot go on. I cannot go on breaking. I see a psychologist for people with health hiccups to try and deal with the emotion and stuff generated by physical health, but I don’t find her helpful. I don’t feel any of my doctors are helpful at the moment. I am going it alone and I’ve done very well so far. I tell my doctors my plan and I stick to it. Because they won’t try. nothing has changed. I want a life and I want a quality of life and I am the one who worked for it and I am the one who has achieved things they haven’t. And I won’t stop. I won’t stop until there is nothing left to try for.
This is not an act of rebellion. It is a last resort to save my soul. There is a person behind all of these health hiccups, behind all of these difficulties that others cannot comprehend. And she is breaking. For a long time she was breaking and she didn’t know how to cope, and she got desperate when things looked even bleaker than before. She has, in her eyes, nothing to lose.
Uni parents (not that you even give a crap), I’m sorry. I tried sensible and it didn’t get me through. Without support I can’t cling to sensible. I have felt dead inside for so long. I have felt alone. I have been hurting. I have been desperate for anyone and anything to cling to. I have been lower than low. I have considered doing things that will leave me six feet under. I have longed to have someone to be there. And I had to learn that I am in this alone. I walked through that hospital, along that pavement, with a letter all about general anaesthetic risks in my hand, and I was half crying half not, and I realised there was nobody I could go to, nobody I felt I could pick up the phone and message (because as I just said, you DON’T CARE ANY MORE), and I realised I am in this alone. Properly. Not just medically, but all the way. Emotionally. Physically. Alone. And it empowered me. I am stronger on my own. I am not hindered or judged. It hurts. It cuts me up. I don’t want to be alone. But it isn’t going to break me any more. It is what it is.
There’s no way but stupid this time around. I cannot go on the way I have been. I need something that nobody is willing to provide. I need a life. My life. I need to feel human again.
I just need to feel alive again.
I am trying to save myself.
Unfortunately I have to risk my health (and the whole bigger thing that begins with an l that depends on my health) in order to do that.
If not, the grim reaper will do the one thing that the people I tried trusting didn’t – he will have my back, no matter what, not matter when. And he won’t let go.
But this will be ok.
I will be ok.
I’m sorry, to the people who ever called me brave, to the person who just told me I was a superhero. I’m sorry to my cousin who wrote about me in her school project on her hero (and is now sat across from me watching the Olympics) because she was inspired by how I dealt with my health hiccups. I feel I’ve misled you all. This is me. This pathetic, broken but refusing to break, refusing to go down without a fight, stupid, reckless, irresponsible thing… This is me. It never used to be. So maybe it isn’t. I don’t know who I am. I used to be able to say I ran and swam and sailed and did art and wrote and the ability to do most of those things has gone, and I don’t have the passion or motivation to do anything. I am trying to be me again. I don’t know how to be anyone else. I don’t know how to be whoever this is writing this. I just want to be me. And I haven’t been me since I was 13 or 14.
I want to stop feeling like such a waste of a human being, I want to do something for me. I want to shut out my family’s disappointment and hurt and the things that are said in frustration that tear me apart. I want to be human. I want to be human again.
Hate me for that, judge me for that. But nobody has any idea. Nobody. I hide a significant amount from even my closest friends, and even then they just instantly carry on about their own stuff, and I instantly feel stupid for being so worried about the span of my life or the potential to die. I am so lost. I feel so… Adrift. And the only way to find the shore is to swim. And the only way to find help before it is too late is to run as soon as I reach the shore.
And so swim and run I shall. to swim home to.
Before there’s nothing left to swim to. Before I end up in a wheelchair again (which I am hoping with all of my heart never happens).