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.
Those of you who followed this blog throughout my first year of university will be aware of my love of wandering around London at night, and of being by the Thames.
There is a feeling of defiance in walking when you feel you could collapse at any second. When your legs are almost too heavy to move and your steps are slow and painful as your muscles (and your busted foot) scream and your energy levels reach negative values, there is a sense of strength and achievement each time your foot pushes off from the ground. Combine that with views of the city that stole your heart and refuses to return it, streets and sights that you are familiar with (and the overwhelming sense of home that results) and there is nothing, NOTHING that could ruin that moment (and nothing that could make me feel more… completely relaxed and content and ok). It kind of feels like defying reality, or at least escaping it for a while.
HK Uni Friend and I hopped on the central line at around 9:45 last night, and ended up at monument station. We took a slow walk through Southwark – across London Bridge and through Borough Market. The market was closed, but all the pubs and bars and restaurants around it were open and SWARMING with loud, overindulged (and far too drunk) city workers letting loose. We encountered a very well dressed businessman laying on the floor trying to punch a homeless man, while his extremely well dressed colleague tried to pull him off. Eventually, the violent drunk guy slumped backwards and sprawled out on the pavement motionless, his fancy suit now in all the dust and cigarette ends that were on the concrete beneath him. His friend apologised profusely to the homeless man before taking a picture of his unconscious colleague and attempting to pick him up and take him home.
London was not yet asleep, there was traffic everywhere and a ridiculous amount of city workers letting off steam. But it was nice. I felt extremely unwell, but it was easy to focus on something other than the anxiety that I’m starting to develop about becoming unwell and the effect it may have on university. It’s difficult to walk around knowing there is a life threatening emergency brewing in your veins. Without realising how tense I was, I ended up by the Thames again, and once again the huge mass of brown, salty water drowned the weight that was dragging me down and left me floating on a feeling I hadn’t been able to comprehend. Those are the kind of moments I want to capture and drag out forever. I was so much more unwell than I could admit. When I eventually returned home I stumbled a few steps into my room and I was out like a light. My health is far worse than I am willing to admit.
This morning I went to uni as normal, refreshed from my wandering and still smiling as I looked back through the photos. But photos were not enough to escape reality, and it hit me hard.
As I stood up at the end of the two hour lecture, my heart felt weird. I didn’t know quite what it was doing, but I couldn’t walk straight, I was dizzy and disorientated and I felt a weird sort of light headed. I went home and grabbed food before walking to Whitechapel with HK Uni Friend. In the middle of the supermarket there, my eyeballs felt warm and my vision started going, and my head felt like it does right before I pass out. I thought I was going, and my heart felt weird and eventually skipped a couple of beats, but it all made no sense to me. I didn’t stop, I sort of just hoped it would stop and carried on. Eventually I got an awful headache and began to get an ache in my chest as my heart raced far faster than it needed to. It continued to feel weird, and walking home was very, very difficult. I genuinely almost couldn’t walk, my body was just grinding to a heart, I felt like I was going to pass out, and my heart rate was very, very high. I didn’t know how I was moving. I got home and instantly just flopped onto my bed. The weirdness continued, and I realised acidosis is probably not my only significant concern right now.
I went down to reception as they were giving out big boxes of free stuff to residents (also because I decided I should probably tell them about my health, as I was that convinced I was going to pass out). I managed to lock myself out of my room and had to ask them to give me a key card to get back in. I felt like such an idiot, but luckily the first time this happens they help you out for free, so I got away with it this time. I bumped into the super attractive guy on my floor (who I met the other day) again, and he said hi once again (I was too awkward to find any other words to respond with, so our conversation stopped there).
My heart is still racing, which I think is responsible for how spaced out and dizzy I feel. There is a constant weird sensation there that I can’t even describe and I’m getting occasional palpitations as it hiccups, but nothing sinister or anything.
But this is not good. This situation, and my health right now, is not good. It might not sound too bad, but that’s because I don’t want to get all dramatic and I don’t want to spend paragraphs listing the severity of the situation. I’m out of it. I’m half asleep even when I’m awake. I can’t think straight, and there keep just being these gaps in time which I’m not even aware of unless I suddenly find myself in the middle of a road or I’ve walked into a wall or whatever. Breathing is such an effort, and I kind of know I’m going to need some serious help sometime soon. This is due to the creeping acidosis and the effects that having a lower than normal pH for the past few days has had on my body. The last think I need is for my heart to have a tantrum on top of this.
For now, time to go out again (I don’t think this is a good time to be alone). Uni Mum messaged me to arrange going for drinks sometime soon, and I may be going to stay with Auntie Godmother tonight as I messaged her, and in response my cousin asked me to stay the night with them…
This post was almost decent, and then I rambled and ruined it. But anyway…
It’s weird having a lecture in the basement of a hospital you’ve been treated in.
The medical lecturer who stood in the basement of the hospital lecturing us said that biomedical science was harder than medicine because we had to know the biology behind the medical junk as well.
We’re going to be assigned tutors from the medical school for the next two years (so the medics that tell us to get off “their” campus can please go away).
I started thinking about the future. Properly thinking about the future, like even more than I have been. I’m toying with several ideas, ranging from going to university in Australia/ Canada, doing a cardiology/ physiology/ journalism degree (vastly different I know), moving to Plymouth, settling into research and getting my competences in biomedical science, and getting a PhD.
I’ve been thinking about a tattoo even more seriously and started sketching about some designs. My brain knows this is a very stupid idea. It also doesn’t care.
Going to the women’s rugby taster session is a very good idea. Women’s Rugby Uni Friend invited me along because she said there would be copious amounts of free food (there was, I sat there while they all played rugby and ate until I was stuffed). Most of the girls were medics, they were all lovely, it reminded me of when I used to play for a football team and made me want to get into sport again more than ever.
Stepney Green Park exists (until I sat in it with all the rugby girls for hours watching the air ambulance take off and return, I had no idea it was even a place.
I went back to WR Uni Friend’s flat afterwards and discovered that my heart was very annoyed. She said I looked “peaky” but was awesome enough to walk me home, and offer to let me live with her and her flatmates next year. She gave me a pack of bagels that she had, and some of the risotto that she had cooked the night before, and I returned home to my flat with it. By the time I walked into my room I was on the verge of passing out. I had an accidental three hour nap, and woke up in time to actually answer a phonecall from my godfather. I love his phone calls almost as much as I love him. We spoke all about uni and lectures and the layout of the course, and then we got onto the subject of my health, and we started talking about exercise. He was the first person not to try and discourage me. He knew what he was talking about, and he knew that certain symptoms weren’t good, but he also seemed to pick up on how much it meant to me. He didn’t call me reckless and he didn’t tell me it was a bad idea, he tried to help me find the safest way to do it. He steered me away from swimming and said I should ride a static bike, then he decided a rowing machine was less of a height to fall from if I passed out. It was so lovely to end a conversation with: Love you and Love you too.
Walking home from lectures this morning, a really weird thing happened. A week or so ago I was walking back to my room and walked into a wall because there was a complete gap in time. The same sort of thing happened again. I was walking along the pavement one minute, and then it wasn’t like anything went black, or I was outside looking in, it was literally like time jumped, like a few seconds just didn’t exist. Suddenly I zoned back into myself to the sound of car horns and shouting, and I had no idea where I was. And then I got a bit more with it and found that I was in the MIDDLE OF MILE END ROAD. A main road. Just walking slowly and clumsily across it. WR Uni Friend was way more freaked out by this than I was (If there was any hope of this post being chronological, it just died, I’m sorry).
Other things I learned yesterday:
MY STUDENT LOAN WAS FINALLY PAID
10:30pm is a fantastic time to go shopping in a low budget supermarket, especially with HK Uni Friend, who already knew what products were good and what weren’t.
Carrying 6l of drinks home from the supermarket is too much effort, even if I get the bus half way home – by the time we were almost home I was coughing and coughing, brining up fluid, and wheezing, and it wasn’t fun. I was close to passing out. My abdomen was so swollen it went out past my boobs – I was told it didn’t look that bad, but if it had been observed in its usual state the difference would have seemed as alarming as it actually was.
I had an appointment in the pacing/ device clinic at the heart hospital the next day at 10am, and would therefore not be getting a lie in.
Having a lot of food is awesome
Breaking news for diabetics everywhere: Some system became the first artificial pancreas system to receive FDA approval. This. Is. Huge. There are a lot of mental health issues associated with diabetes. Diabetics are more likely to experience depression or eating disorders, and people often underestimate type 1 diabetes, confusing it with type 2 (even my friends who are studying a degree in biomedical science seem to think that diabetes is a trivial thing. I know two families who have lost children to it. I nearly lost myself to it).
This morning I left home at 9 and stood around on a slowly filling platform on the London underground as District Line trains rolled in and out. I knew it was going to be an awful journey when I looked up at the board, and instead of saying time until arrival, it just said HELD next to each train. There were major delays on multiple lines including the District Line, which meant the Hammersmith and City line was also significantly delayed. I wormed my way onto a packed train when it finally arrived, and stood there unsure whether I was going to fall asleep or pass out. People shoved and pushed and tutted and sighed and were altogether grumpy and impatient as London commuters usually are. The train sat in tunnels for minutes as the trains ahead of us sat at platforms, delayed. When we reached stations we sat with the doors open for five minutes, allowing an extraordinary number of people to force their way onto the train before it pulled away again.
I went to the clinic, sat around waiting, they did whatever had to be done with Reginald (the little device that lives in my chest), told me to go back in three months time, and i wandered out into the rain. Finally, some rain! It was refreshing and the air smelled amazing.
I got back, ate food, made lecture notes, learned that today is apparently national heart day or something, and then fell asleep until 2pm. It took me a full hour to wake up.
WR Uni Friend told me about her family, and it inspired me to FaceTime my little brother. We spoke for well over an hour. He talked to me about school (he NEVER talks about school to ANYONE). He told me what he’s been learning and what subjects he likes and started showing me his exercise books (you’ve no idea what a big deal this is, my brother is 14, hates school, and thinks it is a waste of time). He told me he’d been sneakily doing the homework that he forgot in the bathroom late at night so that he could hand it in for the next morning, and then he started talking about films and general life. He is still not enjoying life with narcissist nephew, who thought he was a big man making gestures about me behind the phone while I spoke to my brother (who got very defensive and made me feel ALL THE FEELS). He called me back and we spoke for longer, ignoring my parents insistence that he did his homework. When I asked him how stress dad was being lately, he just made a deadened groaning sound and said he’d say no more. I asked my mum if she wanted to meet up with me today a few days ago, and she said no because Thursday (today) is her only day off. But my little brother and her are now coming to meet me on Saturday, and my brother and I are really looking forward to seeing each other. He was disappointed when he had to get off of the phone and go for dinner. I felt like I’d finally reclaimed him from his games console and it was so nice!
With my newfound funds I bought some textbooks and applied for a new students’ union card, and I’m currently trying to ignore the nausea, distorted vision, headache, and taste of acidosis that is slowly overwhelming my senses. In a few hours, I’m going to have a problem. Right now, I intend to have a life (HK Uni Friend is on her way back to our accommodation and we’re going for a night time stroll… At 9:30pm… In Mile End – which, for those of you who don’t know, is not a particularly nice place, especially for young women… There’s a lot of crime, especially muggings and sexual assault, and especially among our university student colleagues… But hey. We want to walk).
Everyone around me is moaning so much about having a cold or a paper cut or a sore throat or whatever, and in a way I kind of feel like a badass enduring this and want to see it through until it doesn’t hurt any more. I feel like I’m kind of pathetic bowing down to the pain of this, and I also don’t want to appear weak in front of anyone. My friend is a doctor. He looked at it… Swore. Told me it was quite clearly broken, that I was THE definition of a tough cookie and must have a ridiculous pain threshold, and that professional footballers rolled around on the floor with injuries like this. I do have a rather irritating limp, and I have tried to put it back into place multiple times (as soon as I stand on it, it looks like this again). It’s a minor, minor injury and compared to everything my body has been through in the last few months alone it is barely a scratch in comparison, and in my mind therefore nothing to worry about (especially as I’m currently significantly unwell and that is demanding all of my attention instead).
My health is creeping up on me. My heart is getting grumpier as the days go on and as I sit here I can feel acidosis brewing again. I should go to a hospital. Really I should, for so many reasons… But my friend is back and she wants us to go for that walk, and I want more than anything to wander with her. So it’s stupid, but I don’t want to be like one of those people who resigns to bed with the lightest sniffle and acts like they are dying. I want to bury my health, stop letting it hold me back, ignore the pain that I rightly deserve (and in fact let it remind me that I am still alive), and go out there into the night, into the city I love… And live.
I stop when I can’t carry on… And I’m not at that stage yet.
Sorry about this post. I’ve no idea what it is, but hey.
No way but through.
I’m just trying to get a life (as the title of this blog suggests) I’m lost, but even my godfather noted that I’m in such better spirits than when I met him on Southbank a few weeks ago…
I just need to live a little. Just a little, before the next time I almost die (who am I kidding, the next time is already here, my body is killing itself and I can’t hold this of for much longer).
A really weird thing has happened to me in the last couple of days – I’ve started thinking forward, planning. Not just the next day (I kind of live in the moment and go with whatever) but the proper future, like what may be beyond this degree. This is a huge deal for me because for a long time I was so uncertain that such a future would be there, or that I’d make it to the other side of this degree, that I saw no point in planning, and that even thinking that far forward would become disheartening and remind me that living with my health is like playing Russian roulette – each time things go wrong could be the last.
Firstly, I stopped living in fear. I let go. And then I came to uni, and it injected some ambition back into my life.
Yesterday I woke up, took my bins out, and arrived at my comparative physiology lecture 20 minutes early. In the lecture, I felt like I was going to pass out. I had a thumping headache and my vision was going. 9am was too early. The rest of our lectures are 10am, and I’ve found them so much easier to wake up for (today and on Monday). I wasn’t as exhausted as I always was last year (when all my lectures started at 9) and I’ve decided that extra hour in bed makes all the difference!
I sat there listening to the lecturer talk about his research and all the places it had taken him, and it made me think a lot. The lecturers that stand before us and take a couple of hours of their time to share the knowledge that they’ve gained are published scientists. They’ve worked in many places, contributed to incredible research and discovered awesome things. The places they’ve been and the things they have done with their lives are incredible and so interesting. I found myself drawn to the idea of research for the first time since I started this degree. I’ve always liked the idea of lecturing, but suddenly getting a PhD and working in research lab was such an appealing idea to me. I wanted to do medicine. That was the dream – to help people, and then once qualified highly enough, volunteer for a charity and provide medical care and surgery in places where people couldn’t afford it. I sat there and thought it all through and realised that with my health, especially in its current state, that isn’t a realistic aim. I needed to scale down the dream and plant my feet firmly back in reality. So it hit me in the middle of that lecture, that I could think of nothing better than working all day on something that genuinely interested me, and then talking about it to a room full of university students and sparking some interest in them too as my lecturers have done in my own mind. I feel like that is also a way of passing on some good and spreading something positive in the world.
I went home, cooked myself a tiny amount of gluten free pasta (which was also free from egg, milk, and something else, so I wondered how on earth it was still pasta). I listened to a recording of yesterday’s lecture once again s that I wasn’t wasting time not learning. I did this in first year – I started the year doing far too much work. I was studying for 11 hours a day, but not out of pressure, because something in a lecture would grab my interest and I’d type it into a search engine and end up in a rabbit hole of curiosity that would lead me into hours of reading research papers and online textbooks until all my questions had been answered. As a result, my notes went into FAR too much detail and were useless for revision purposes as there was more extra work than actual lecture content, and after a few weeks I became unwell and eventually ended up just attending two hours of lectures a day and sleeping the rest of the day away because I could do no more.
I went to my physiology lecture. This year our physiology module focusses on cardiac and respiratory physiology. I already knew the lecture content in more detail than we covered it, because I have a huge interest in cardiology and the workings of the heart, and after discussions with cardiologists that cared for me sparked interest, I would ask to borrow their text books while I was in the CCU or end up on the internet reading around the subject again (oh wow I’m such a nerd). A lot of the stuff I knew because my own heart had led to me hearing terms and stuff before. My friends found it funny. They just kept looking at me and whispering “OK so I’m revising this with you because you can just teach me it all.”
I went home and read through a general biomedical science textbook, reading about the content of all the lectures we’d had so far but from a different source. I then made revision notes, before realising how unwell I felt again. I curled up around my laptop and guiltily put on a YouTube video, before falling asleep. I napped on and off for two hours, and woke up feeling like I hadn’t slept for a million years.
I also woke up to the AWESOME news that Student Finance England are FINALLY going to pay my student loan and that the money would be in my account within three working days. This is because I was finally able to enrol on the university system, due to receiving my corrected exam results the other day.
I found a map of where our lecture in the dental hospital was due to be the next morning, and sent it to everyone I knew as I knew people were as clueless as I had been about where to go. I have never received so many messages from people saying they love me. It was pretty funny.
HK friend invited me to the pub later that night to meet her other friend from Hong Kong who also happens to go to our university. I was bummed out because I’d missed a phone call from my godfather and I love our long old chats, and I was once again in the start of acidosis and losing the ability to remain conscious, but I dealt with it yet again and and three hours later I left to meet her. I’m so glad I went.
There were nine people, and the only one of them I knew was HK Uni Friend. Her other HK friend was so lovely! They were all so easy to talk to and such an attractive bunch of people! I was worried they wouldn’t accept me, and I’m usually really shy, but I put myself out there and chatted and really gelled with one girl in particular (who I will now call Fresher Friend). I had such a great time, and was introduced to them by HK Uni Friend as some sort of miracle, who was extremely tough (and then NO. She’s TOUGH) which I guess is a compliment? (even if it couldn’t be further from the truth!). I had such a great, great time. It was all so relaxed, and they gave me a voucher to get a really cheap gourmet burger which came on a huge plate with chips and onion rings. My old flatmate was working behind the bar but I got talking to this guy who was middle aged. He asked me where my parents were from as I’m mixed race and he noticed my afro-carribean half. I spoke about my dad, and he asked me about him and if I’d ever been out to meet my extended family. I said I didn’t know my dad, and he was estranged from two daughters who were close to my age. He kept telling me to get in contact with my dad and decide what he was like for myself, but he wasn’t stroppy about it, just said it from the dad point of view. He was friendly and we talked for quite a while… Until I went to join the others again. There was this really pretty fresher there (Fresher Friend) and she was so lovely. She started telling me her entire life story and then apologised but said I was just so easy to talk to (I get that a lot, and I never understand why people are sorry for letting out what they need to let out). Everyone was smoking fancy french cigarettes (apparently that particular brand are referred to as bitch sticks) and passing around drinks and wine. They were such a cool group of people, well dressed and so above the sort of people I ever thought I could mix with.
They invited us out with them on Saturday night. Fresher Friend asked me to go, and she also asked if we could meet up between lectures for coffee and stuff sometime. She lives in the hall block that I lived in last year, although right at the other end, but she looks out the same way onto train tracks and has the same view I did. We got along so well and I was really surprised. It was the kind of stuff I missed out on last year – meeting new non-biomed people, mixing, going out at weekends… I can’t believe it happened to me, it feels so surreal. It’s me. It was such a great night and it was so chill and I was there… And people like me… Me! What… Even.
I came home passing out. I probably should go to hospital at some point but I can’t. I considered getting help and thought through it all, in my mind walking to the hospital and letting them start treatment to save me. But even in my imagination I freaked out to the point that the imagined scenario fell apart around me, tumbling down as panic overrode it all. I literally can’t. I see doctors in my mind, I see my health teams finding out I’m here and deciding that instead of calling me and being ignored they will appear in person… And I can’t go there. I don’t want to face them because I don’t want to face up to my health. I am comfortably in denial and somehow I am dancing along in this state and it feels bad and I can’t cope or carry on like this but I’m at uni and I will not let that go. I’m terrified of missing out on uni because I am loving it, and I’m even more scared about how the staff will react. I can’t live like this.
I don’t want this blog to mention my health unless it becomes a huge issue/ nearly kills me. I don’t like that I mention it so much, but it is a huge part of my life and this is the only place I have to let it out. I don’t want pity or sympathy (in fact I actively don’t want those things), I just want to let it out and perhaps help people word their own feelings or find people who understand mine in the process. I guess I also want healthy people to see what goes on behind the scenes of chronic and serious illness.
Normal life may be a bit boring, but I feel that my life is becoming increasingly normal and I’d like to just focus on normality a little bit, instead of shaping my health problems into my identity in shape of my personality, which I don’t want to do. I don’t need this blog as a coping mechanism right now as I have done, because things feel pretty amazing. I’m feeling much better about my 2:1, after I told my result to the uni parent who I hadn’t spoken to for months (who was certain I would get a first even when I was in hospital at the start of the year, and seemed to think I was definitely going to achieve one). I expected disappointment. I expected a shrug of the shoulders. I got a congratulations. In fact, I got “Great news! Well done! Delighted for you.” And then it was easier for me to sit with my grade, because I stopped feeling like I’d let everybody down. Somebody who had expected so much from me was happy that I got a 2:1, they didn’t voice their disappointment, and in doing so they almost silenced mine. I’m in a better place emotionally thanks to university than I have been in a long time (ok university also destroyed my emotional state at times last year but hey). And I actually made new friends, who were so nice and easy to talk to that I didn’t feel like my usual awkward self around them.
I don’t even know what I’m trying to say. I’m dealing with physical stuff and emotional stuff, and I don’t want to deal with any of it at all. Not any more. Not in a sense of letting it do its own thing and take my life down with it, but because I don’t want it to be a thing. I don’t know what healthy / not chronically ill feels like, but I’d really like to experience it for a day. I think it would feel weird. I think it would feel like freedom. I think it would feel amazing. I don’t want the responsibility of controlling my body with injections and tablets to keep myself alive and then to fail and almost die anyway. I feel responsible and like a failure when my health deteriorates because it is my body and I try to manage it and it is the one thing I’m meant to be able to control. Always. Even if everything else falls apart, your body is yours. Except I feel like someone else owns mine – all the doctors that rule it, the health that destroys it, and the demons that move into the cracks that appear under the pressure of these unwelcome visitors. The week I’ve had so far is what I missed in first year. I’ve met so many people, fitted in with three different groups of friends and spoken to people I haven’t spoken to before. I’ve felt less lonely, I’ve been socialising and laughing and smiling. I don’t want to lose that again. I don’t want to lose this situation. I don’t want my health to rob me of a single element of this and I know it will but I don’t want it to. I am beyond determined to just ignore it because in my mind that is the only way to fix the problem and make it all go away. I know I’m so lucky, and I am incredibly grateful for my situation; I don’t mean to sound spoiled or pathetic, I’m just incredibly and helplessly frustrated and so, so desperate not to let my health do its thing any more.
But I am kind of living by this attitude right now. So I guess to share that philosophy I’ll go back to the way I used to end my posts when I started this blog.
Step (I’ve lost count) to getting out of a rut in life:
There are two things you do when life goes wrong: You get up, and you carry on. (My brain occasionally has productive thoughts – and this one even accidentally RHYMES!)
I haven’t posted for a few days because lectures are surprisingly exhausting, and I have returned to my first year panicked state of feeling guilty if my attention is given to anything other than uni work (I don’t mind, because finally I have something to fill my time, and I have been reminded of how in love I am with this degree).
I’m not really sure what’s going on with this blog. The format of my posts seems to be changing (by accident) and I have kind of gone back to rambling on about nothing in particular. One more post of awfulness and then I promise to try and shape this all into something I’m half pleased with.
I spent all day in bed so my body could recover from its brief encounter with (almost) acidosis. It responded by… going back into acidosis at 4pm. I’d been sleeping on and off all day and I felt so unwell that a small panic eventually began to bubble up at the thought of missing any university at all. I concluded that I probably hadn’t entirely got myself out of this situation the night before, dealt with it as best I could all over again, and started reading over physiology lecture slides in preparation for a return to what I can only describe as heaven on earth (known to the rest of my course mates as our university).
Hong Kong Uni Friend invited me to the cinema at 8. I could only stay awake for 5-10 minutes when she messaged me, and even then my eyes were heavy and hardly open. But I’m not being the unwell person this year, so I said yes. She paid for my ticket, and for a large popcorn and drink (it took me two hands to hold the drink alone, the portion sizes were so big!). When I met HK Uni Friend my abdomen was slightly distended. We watched it grow until I looked pregnant.
On the way home we encountered a drunk guy wandering up the steps to the Central Line. He was asking a couple where he should go and they clearly didn’t want anything to do with him. He stank of booze, and when I spoke to him he said he was having a bad day. He’s lost his friends, his phone, his Oyster card, and his jacket, and any memory of how on earth to get home. Eventually we worked out that if he got to Upminster, he could get a taxi home with his casino winnings (he’d just been kicked out for being too drunk). He was middle aged, very apologetic and embarrassed, and extremely wobbly on his feet. I said I’d show him where to go, he was going our way. HK Uni Friend didn’t say much, which seemed to be a wise decision, as I received many kisses on our one stop Central Line ride, and she escaped with none. I didn’t like some random guy kissing me on the cheek multiple times, and preferred when he just stood there saying we were very nice and that this demonstrated the circle of life (he said thank you more times than I do, which I thought was impossible!). As the tube pulled away I was so focussed on the drunk guy that I forgot to get my balance and stumbled over onto my foot. It rolled underneath me, twisting my ankle, and making my most lateral metatarsal scream (the foot bone behind your little toe).
I ignored the foot thing and we walked the guy to the next platform he needed and stood with him until the train arrived. He got onto the train still shouting thank you, and we left satisfied that he would at least get somewhere significantly nearer to his home.
I was introduced to the night guard of our accommodation, who had a long conversation in French with HK Uni Friend (whose family is actually french). HK Uni Friend had already warned him about me, and he said he’d almost come to my room the night before to check on me. We asked him to alter my key-card so that I had access to the gym. He gave me a form to fill out and went to do whatever needed to be done to make that a thing.
I experienced that awkward moment where the only “no” you can circle on a list of 14-15 health conditions/ issues that mean you’re unsafe to use a gym is Are you pregnant? (because my love life is as non-existent as the functioning of my beta cells, and my body is a poop).
It asked stuff along the lines of
Are you unaccustomed to strenuous exercise?
Do you or have you ever had chest pain or heart palpitations?
Do you have a heart condition?
Do you have a respiratory condition such as asthma?
Do you have a chronic illness such as diabetes, epilepsy… ?
And the list went on. He told me to be honest when I filled out the form and questioned whether I could or should actually use the gym. I told him it was fine and that I’d try to build up to stuff slowly. And then somehow at some point he learned that I’d spent an hour laying helplessly because I was too unwell to move, and decided that knocking on my door every night shift to make sure I was alright wasn’t enough of a precaution, and so made me put my mobile number into the mobile phone that the night porters carry with them, which will always be with a member of staff 24/7. I also took the number for reception. He said he had a duty of care for me and he wanted to make sure I was ok while i was living here. I kind of felt like I’d be safe here then.
HK Uni Friend showed me where to take my rubbish, and on the way we encountered a drunk guy stumbling over to the lift in her wing of the building covered from head to foot in the contents of his own stomach. We were pretty grossed out by this, as were the people hanging around reception, who were really friendly and chatted with us. Once again I was bought food, for which I felt completely awful, but HK Uni Friend said it wasn’t charity, she wanted to do it (which made me feel a tiny bit less awful and pathetic).
I woke up with a throbbing pain still in my foot. Upon removing my foot from the warmth of the covers, I discovered that most of it was purple, with a huge almost black “epicentre” over the metatarsal which I then realised (as the swelling had settled down a lot) stuck out in a way that it probably shouldn’t. I was pretty amused, so sent a picture to a couple of my course mates (I have discovered that biomedics seem to be intrigued by this sort of picture) who took one look and immediately decided that I had broken my foot. This resulted in them for the rest of the day pleading with me to go to the hospital as I limped around totally not bothered by the sharp pain. No thanks. Just no.
I left home 20 minutes before the lecture (which was literally on the other side of the road) started, with Bastille playing in my ears and a view of central London stretched out before me as I walked down the corridor. HK Uni Friend and Portsmouth Uni friend were both a little late to meet me, but we went into lectures anyway. My really good friend from last year who I always used to meet before lectures sat next to me. We hadn’t messaged for months because she was super stressed out by exams and I felt like nobody would really want to talk to me, but it was as if we’d never been apart. Being in lectures felt so, so good. I can’t even explain it. After two hours of human molecular biology (with a northern lecturer who gave off a Noel Gallagher sort of vibe and became significantly more upbeat when he’d had more coffee and got past all the boring “this person lectures you these weeks” stuff), we had a one hour break and then went into our physiology lecture.
After that, Uni Babe and I bumped into Uni Pal and Women’s Rugby Uni Friend (who we’d just been sitting with) in the shop opposite campus. They invited us to go to Stratford with them to get piercings, so we got on the bus and went with them. I had no money for a piercing and wouldn’t have gotten one even if I did (I am genuinely considering a tattoo though, and have been for the last year. I really, really want one to cover a surgery scar from radial artery surgery which people always mistake for a self harm scar). We were told to go back at four, so we sat and chatted about what lecturers they fancied and our personal tutors and other random junk. My lunch was paid for which made me almost want to cry with shame, although I was so hungry I felt sick so I eventually gave into their persistent offers and said yes-please-thank-you-sorry.
I spent my afternoon sat in a tattoo parlour drinking tea made by the tattoo apprentice, and in complete heaven due to the amount of art and awesome body art I was surrounded by. I watched people getting tattoos and I got talking to the lovely (and very talented) tattoo apprentice. I showed her some of my drawings, and then asked if I could look through her sketch book. I went through it cover to cover and it was so awesome to talk to an artist and just get lost in a discussion about art. She was so talented and my favourite was a (not anatomically accurate at all but amazing looking) heart with blue major vessels, and the actual muscle itself made up of pink/ purple crystals. I discussed all her drawings with her but kept going back to that one. I took a picture of it (with her permission) as I decided that instead of an ECG trace over the line of my scar or an anatomically accurate heart in black and white, I wanted that one. So I finally figured out what tattoo I wanted while my friends got another cartilage piercing and (another) nipple piercing respectively (Uni Babe immediately bailed when we got to the place, and I’m not meant to have tattoos or whatever so…). They’re such an awesome group of people, they also have tattoos which makes them even more awesome in my eyes (I never used to see the appeal of tattoos, but now I’m not sure whether it is the fact that my health means I shouldn’t really get one, or the feeling of rebellion, or the genuine appreciation of the beauty of some of them, or the act of covering the scars that I’m not comfortable with… But I’m just drawn to the idea of them).
I felt like I was going to pass out multiple times, and couldn’t work out why. There was an undercurrent of awfulness, but I was more focussed on my foot and arguing about why I refused to go to hospital for such a teeny tiny thing as an annoyed metatarsal. As we wandered back through Mile End, it was pointed out the “You look like you’re actually pregnant!” I’m pretty conscious of my swelling when it happens, and I felt super embarrassed. Uni Pal told them that when we’d gone out the other week I’d looked pregnant with triplets. I feel like I should probably get that issue sorted…
I finished my lecture notes from that day of lectures (I made notes before the lectures from the slides, then during the lectures from what the lecturer added, and then combined them all afterwards into detailed notes from which I then made a revision sheet). I do not want to fall behind this year. It took me until midnight but I loved every second and I was driven by this unshakable desire to just… Fill every empty corner of my brain with knowledge, I guess.
And then I realised I was back in the early stages of acidosis. I’d been fighting it all afternoon and still hadn’t shaken it off again (because I needed IVs to do that properly and I’ve no intention of going to seek the help of people who could sort that out under any circumstances right now). I know I can’t hold it off, but there’s this huge mental block between me and hospitals. I can’t even pick up the phone or reply to an email if I know there’s a doctor or nurse at the other end at the moment. I shake. And I’m too afraid of the university’s reaction to miss even one lecture (which some already had just one day in!). I patiently waited, and moderately panicked, until I had the energy to lift my head off of the pillow, made it to the sink, and just drank and drank and drank. I don’t usually panic about my health, and I wasn’t panicking about what was going on inside of me, I was panicking about the effect it would have, the reaction of my university, the things it would take from me… How messed up is that?
I ended up getting into the shower at 1am, after my 12th nosebleed of the day. I put on a Jenna+Julien podcast (the background sound to my day) and ate some food. I fell asleep to a recording of that day’s lectures, listening to my friend’s personal tutor talking about the C-value paradox and tandemly repeated DNA segments. Because that was all that mattered to me. I have uni back, I’m back living my dream, and my life has something in it again. Uni is my life and my life is uni. It’s like a comfort blanket. I love it here .
The panic, the pressure, the throwing away all other interests and putting away the non-fiction book I’ve been reading so I can re-read the paperback I have about epigenetics… It has begun again. The pressure is unreal, and I’m just constantly terrified, almost phobic… about becoming unwell, or ending up in hospital, or missing even a single thing. Yes it is stress and pressure, and being back at uni is unreal in terms of exhaustion. But… I love it (even though I’ve become a little unaccustomed to it). I feel alive. It makes me feel like I have a life.
And that’s all I wanted, for so long. To go to uni. To feel alive.
Never underestimate the power of an education.
For me, there’s no way but uni. Without this place I could never have kept going.
She reaches into her purse and pulls out £15. A trolley of empty boxes beside her, she holds the two creased notes out towards me. I thank her, and am told,
“This is the last penny you’re getting out of me for a year.” thanks to me (well, the place I’m living, so… technically me), my family are now in a financial tight spot. She can’t afford to give me any more, and she can’t afford to give me any money again. She’s given me the money because she wants me to go to the “welcome drinks and food” taking place in the restaurant in my accommodation. She says I might have to pay for the food, and hugs me.
I’m more interested in standing and watching her walk away. In my mind, I am coming home not leaving home… but my mum will always be my mum… and as she left I held back tears. I think she did too. She kept turning around to wave. I’d been meant to be meeting my Italian friend from uni. She usually bails on me. She did again. I think I may be done attempting to meet up with her. So my mum left, and I was alone… Until she called me to say
“You forgot Harvey and your notebook” (Harvey is the bonsai tree I bought at the start of last summer. Whenever I nearly die, he loses all his leaves. Seriously. I’ve nearly thrown him away many times thinking he was dead. And then he just grows new shoots and leaves again). This time she drives away, I lose sight of her faster, and it’s like ripping the plaster off instead of peeling it away slowly. She spent hours helping me move in, and now that she’s gone, I don’t know what to do.
(Change of tense here, because why not?
There was nobody around. It was awkward. At this stage of freshers, I went and sat in my kitchen with my flatmates and the awkwardness dissolved between us and our collective desire to get to know each other. I wandered round and could find nobody in the communal areas. There was nobody. My room is like a little bubble. I
Ex-flat-brother (who lived in my flat last year) also lives in this accommodation too. I met up with him. It was kind of awkward to my brain, but he’s a nice guy most of the time and has been a good friend to me in the past. We wandered around a bit, I showed him where the garden was (there was a BBQ, but nobody had showed up, so…) then we just sat on a sofa and talked for a bit. He showed me his room, and I ordered myself a pizza, onion rings and some chips, and took them back up to my room.
I laid on my bed looking out at Canary Wharf in the night. It was all lit up and so it illuminated the clouds that, as the night progressed, sank into a mist that glowed like a big yellow halo in the light from the buildings it had swallowed.
It was silent, and I was alone, and thoughts started to swim. I had to pay for wifi and have no money at the moment, so I went with the free service, which gives me 20MB per… some time period (whatever, it was too slow to watch youtube videos, so I connected to my phone). I watched Julien Solomita vlogs, then a load of Roman Atwood Vlogs, and then the latest Lance Stewart vlog. And then, as I rolled over onto my stomach to go to sleep, I hung my left arm out of the bed and said “Good night [my dog’s nickname]”. My hand closed no thin air and for some reason I had expected to feel warm fur. And that was when it hit me. In my old flat, I would have wandered into the kitchen and found other humans, but nobody was about. I gave up on sleep and I stared out of the window and listened to sirens, and eventually drifted off at 3am. I woke up two hours later, and I reached for my dog again. I even called him, that time, wondering where he was. I’ve never done that before. He obviously wasn’t going to be there. But I nearly cried. If I hadn’t fallen back to sleep, I probably would have.
This morning I woke up to the same awesome view I fell asleep staring at. I said good morning to my dog, and reached for him again, this time stopping before I grabbed at thin air, realising before reality hit that he was not there, and craving the company of something, somebody. Anybody, really. I started unpacking the rest of my stuff and listened to back-to-back Jenna&Julien podcasts all morning. It filled the silence. They made me laugh out loud. I looked out of the window (something I find myself doing an awful lot, even as I type this) and saw a running club or a park run go past in Mile End Park. It made me smile so much, to watch others running. It also really made me want to run.
I discovered that I can see the O2 arena (on the other side of the river). I then sat for ages watching planes take off from London City Airport, before they turned (each one at the same point) and flew straight at me, and then over the uni campus behind me. On campus I used to try and work out where the airport was as the huge low-flying planes roared overhead. Now I know, which is kind of cool.
I ate cold pizza all morning and panicked that I couldn’t find my Oyster card. And I had a small unhelpful train of thought which shall get its own blog post shortly. I messaged My Fellow Third Wheel, and spent hours laying on my bed, staring at Canary Wharf and helping him with a problem he has right now. He told me I was helping when I wasn’t actually sure whether I was or not, and I felt a little better, I guess. Sixth From Friend’s Girlfriend messaged me, having just moved into uni, and seemed to have already decided that she couldn’t have any form of social life at all and had to shut herself away and work all the time. I spent a while fixing that situation – talking to her always reminds me how young 17 really is. I was lonely, so I messaged a few people, including my godfather, asking if they wanted to meet up. I think I might ask Aunty Godmother & her family if I can go and stay with them again.
I got ready (by that, I mean, I threw on clean clothes, the shower can wait) in preparation to meet Uni Pal, to then find that she would be delayed by three hours to our meeting because… wait for it… somebody stole her mum’s numberplate… while her car was parked on their driveway! Who even steals a numberplate?! We’re still trying to figure this out.
I’d noticed that my shirt was very difficult to button up (I had to pull it together really hard and struggled to get the buttons together… Usually this shirt is baggy over my flat stomach) and was almost bursting at the seams, but it wasn’t until I finally knew Uni Pal was almost home in London that I put on my shoes. I wear running shoes that are basically super thick socks with a sole attached (wearing running shoes was my compromise last year at uni when I wanted to run so badly, but couldn’t. I put on running shoes and it made me feel a little better. I now practically live in them). They are stretchy, they can’t be too small (especially not on my feet, which are so narrow and thin that I can’t find strapless shoes that actually stay on them). And yet, I couldn’t get them on my feet. It was at this point that I stopped to look at myself. Moving in yesterday, my abdomen had swelled a little over the course of the afternoon as the strain of lifting boxes irritated my body. Today, it had taken the swelling to the extreme. From literally where my sternum ended, my stomach bulged further forward than my boobs. I couldn’t find a single item of clothing that fit. I realised the wheeze and odd feeling in my airway that I’d been brushing off all morning was probably also related to this, because it had a very specific feel that I suddenly realised I recognised. And then I looked at my feet. Or at least, two puffy things that used to be my feet.
I couldn’t be bothered to have a defective body today, so I wrestled my shoes on, and stepped out into the city that stole my heart when I was about 14. My legs seared with pain as blood pooled and my calves cramped. My feet felt tight. I coughed and wheezed. But it was heaven. It was what I needed, to move, to get outside. I was not going to have a defective body, and even if it insisted on being defective, I wasn’t going to give it the satisfaction of acknowledging it.
I saw huddles of freshers stood at the traffic lights, waiting with no idea that they could cross safely in the absence of the green man as long as the cyclist’s traffic light was still red (means you still have time to cross). I felt at home, with a podcast still in my ear, and familiar sights surrounding me, I felt like I was home. My room is nice, but everything in it, including the room itself, feels foreign to me. It doesn’t feel like mine yet. It feels like I’ve put all my stuff in somebody else’s space. But Mile End… It was like a comfort blanket of sights.
We went from Charing Cross to The Strand, and walked from there past Trafalgar Square and the National Gallery to Leicester Square, where we wandered past all the police and the fountain to stroll along/ through Piccadilly Circus. We walked on to an Irish bar in China Town, but had just missed the end of the gaelic football final Uni Pal wanted to see. I bought us a couple of drinks (I ad non-alcoholic, because I figured my body was already annoyed enough). Uni Pal then took me to a really posh French bakery in Covent Garden. We sat and I ate an apple puff pastry, and a biscuit that was bigger than my face. As we walked back along the Strand to get to the underground, we passed a sight that almost made Uni Pal cry, and almost broke my heart.
A line, about thirty metres long. Some people in suits, most looking completely normal, just like us. Some neat, some holding guitars. Some were wheeling suitcases. Some were scruffy. Some were young, old, attractive. Some looked just like us, like they could have walked right off of a uni campus. They were all queueing for a van serving soup. They were all homeless. And most of them, had I passed them in the street, I wouldn’t have thought were homeless at all. I wanted to give them all my money. I wanted to cross the road into the fast food restaurant and buy all the food I could afford and hand it out. But I had no money left. And until my student loan payment hits, I can’t get more. People judge the homeless, but there was a man stood in a very expensive suit… And it just showed that it could be any of us. At any point.
Less than forty metres from the back of the line was a bank where you can’t open an account unless you have £100,000. Uni Pal said you usually pay it in cash (she knows these things). I hated society right there. I hated the world for walking on by, for the looks of disgust people were giving at their fellow human beings. The only thing I felt when I looked at them was an overwhelming desire to bring them all home with me and give them a warm, safe place to sleep. People even spat. At other humans… I have no words…
If my health stays good enough, I think I will find a local soup kitchen and volunteer. Normally when I see people living on the streets, I buy food (usually hot food, if I can find it, but at least a sandwich) and a drink (also usually hot) and ask if they would like it. I’m aware that they are people, with pride, and I never mean to be condescending. Some refuse, but most take up the offer. A lot of these people cry. I sat down with one guy once, and he told me all about how he’d become homeless. I always carried spare food after that. There are plenty of people living on the streets in London, everywhere, especially in the better areas (e.g. Holborn). I find it easier just to leave an apple or something next to the people that are sleeping, I’m kind of shy and I prefer not to have to face the awkwardness of watching their reaction. But anyway…
I’m not going to lie, I feel so, so lonely here. I like to be around people. I want to be around anything living. I might go swimming tomorrow, or for a walk. And I’m going to ask if I can go to Aunty Godmother’s house. I have people to meet up with for the rest of the week, but even then that’s only for a couple of hours at a time. I don’t like being alone. Well, I do, sometimes. But I like to have the choice. I don’t like having no option. I am so lucky to have a place to live, especially such an amazingly nice one, but I feel so guilty about the financial impact this is having on my family.
Talking of family, my dad drove up here to drop off my stuff, and he didn’t even want to come in and see my room. My mum told him to say goodbye to me and he just shut the boot and went to get in the car. She called him again and he said he hadn’t heard. He was going to leave without saying goodbye. And that said it all to me. I couldn’t even look at him as he stood a couple of metres away and said the word goodbye. It stung to matter that little. My mum told me off for looking at the floor, but I was looking at where he made me feel I belonged, and I was trying to to crumple into a million pieces and lay in the gutter beside me forever. I won’t miss moments like that.
But being so alone is bad for my mental health. I feel like I’ve moved into the place where I’m going to end it all. Genuinely. I think living here is going to kill me. All I’ve wanted is some space to myself, but not to be in my own bubble shut off from the world. I’ve walked around the communal areas and there’s still nobody. Most of the rooms on this floor are still empty. I’m so lucky to be here. It just isn’t good for me. Sometimes the things we want, and the things that make us happy, are also the worst things for us.
But I am in love with this view. In a city of millions of people, I feel very alone right now. I can’t wait for my course to start. I can’t wait for My Fellow Third Wheel and my little brother and my nephew to come and stay (each at different times). I can’t wait to try out for the swimming society.
There’s just a week between me and that.
And I rally don’t know what to do with it (there may be many more equally long and equally awful posts)
Thanks for reading. I mean it. I don’t know why you read this far, but thank you so much. Means a lot. (I also love that you guys refer to uni as home in the comments you leave. My family refer t Kent as my home, and it doesn’t feel like it at all. It makes me smile when other people call London my home because… It is).
Back to YouTube I go! (My data is going to run out soon I swear)
It isn’t even a case of mind over matter. My mind is there, living in the synthetic illusion that my body is capable of the things I want it to be capable of. It is ready. In my mind, my goals are perfectly achievable, and I seem to have convinced myself of that.
But I am physically incapable. My body just can’t. I push it, I become convinced it can and will manage the things I ask of it and it just isn’t there – my heart just isn’t ready. I got it into my mind that I just needed to push through the difficulties, that after a few minutes longer (than is comfortable) of attempted gentle exercise, the awfulness would subside; but four hours after swimming a mere ten lengths, I found myself paying the price. For the first time there was disappointment alongside this sensation. Because when I say that I was paying the price, I mean that in my physical state I was bankrupt. Was it worth this? (Yes) Really? (…No. Wait, why do I even have to weigh up these odds?) I laid out on the bed, feeling as though I were breathing the air from a steam room – it was thick and heavy, an effort to inhale, not satisfying to my lungs no matter how deeply or slowly I breathed. I had no energy, my heart was racing and there was an ache in my chest. My body just cannot.
No amount of hoping or denial will change that. My dreams of running or swimming with university societies and settling into the structure of regular, casual training (not to compete… ok to compete at some stage… but for social reasons too) are exactly that – dreams, separate from reality. Let go. Come on, accept. Move on. I thought to myself over and over.
How do you do that? How do you give up on a dream that to most people is an effortless normality? How do you stop reaching out for all that your teenaged/ childhood self wanted? Not success, not major competition (although low level competition would be awesome) I just. Want. To run. One lap of a track. One swimming session where I don’t feel like this afterwards, where my muscles can work at maximum effort for even half a length – proper maximum, not the limits my heart imposes upon them but their true capability.
The answer is simple. You don’t.
You just don’t.
You live for the moments before those that make you question it all.
You accept reality… and then you dismiss it.
I went from, I can’t do this to my body. [My cardiologist] was right. I can’t swim again. I feel broken. So many regrets about getting in that pool. I can’t breathe STILL. No more. No swimming. No running. Who am I kidding? Let’s be real. This body cannot do those things. Time to let go and scale down our ambition.
Screw it, I’m swimming in the morning. Body, screw you, get over yourself.
But realistically no, I should not be swimming. If I listen to my body, I should just take it easy and find a way to get my entire self used to any level of activity before I get in a pool (and even then my cardiologist was more or less all “do something where you aren’t going to drown if things go wrong”). The trouble is, any level of activity above walking (and sometimes even that) is too strenuous for me at the moment. So my theory is that I might feel completely awful, but in pushing my body it will learn to adapt with the new demand on it. There’s no other way to make it learn other than to force it to. So far this plan is not working. That plan belongs in the land of denial, and in reality it just doesn’t produce results (at least not positive ones).
The thing is, I could do it. Swim properly, I mean. I could do it. I have the technique and I try to move in a way that allows me to put that technique to use; but once my heart says no, I don’t have the energy to pull (which is all I can manage, because flutter kick is death), my muscles scream, and I feel like I’m drowning.
I laid there late into the night and I felt so unwell. I felt… limited. And I let it all sink in, I let reality breach the walls of my denial and seep through the cracks of my hopeful ignorance.
This body can’t.
But I’ll break it trying… (this isn’t even a realistic thought, it’s a thought I seem to think in order to force optimism upon myself, and I hide behind stuff like that a little) Is it worth breaking it? (Sensible finally hit me).
Over the next two days I swam again. 10 lengths and 15 lengths on the second day. 20 on the third. For the first time since my health properly hiccuped, I swam two lengths of a pool without stopping to catch my breath. And the next day I repeated the achievement and swam three lengths before the world started to fade to black even though my eyes were wide open. I couldn’t kick in any stroke other than breast stroke, and all my strokes were slow so I could focus on technique (as I don’t have speed or power). Despite the fact that when I swam front crawl I could only pull and was the only one in the pool not doing full stroke, I was faster than anyone else in the pool. And it was easier than it had been on that first night. I got out of the pool and my heart was racing (it continued to do so for hours). Initially, my lips where pale and blue, and my fingertips were drained of all colour. That fixed itself as my heart decided to slow a tiny bit and rectify this issue.
A few weeks ago I’d been able to swim 61 lengths before I felt how I did on that first night. And I think that’s what shocked me, what made it all hit home. A stubborn stupidity is what made me try again. Inevitably each time I feel lousy afterwards, but I’m starting to build some sort of agreement with my body. When it tells me to stop, I sort of do now (after I test it and push on a little more. But a little more is less than telling myself I can’t stop until I’ve done another ten lengths – which ended very badly and resulted in me almost losing consciousness in a swimming pool).
Life is about accepting new limitations. Or is it? Is it not instead about pushing them? Maybe not, maybe that makes you take ten steps back and either way your body starts to feel like a prison. Maybe life is about finding your limitations, acknowledging them, and working with them – about finding a balance between not letting them rule you, and ignoring them until they bring you to your knees to remind you they are there.
I could spit out this optimism and tell you that I won’t back down, give it all the talk that I am stronger than whatever and will achieve the things I set out to. But that feels false. Because I say those things, but realistically there’s a very real chance that I will fall far short of the places where I aim to go. Those words bubble from denial, but they also stem from a determination that likes to rumble on in the background. My body told me no, and my brain finally backed down and listened to it… briefly. Because I know how hard this is going to be, but part of me is still convinced that it is worth it. And none of me knows how to let go. This is stupidity, stubbornness, an inability to let go, a hopeless dream of being something I will realistically never be.
But life is full of hopeless dreams, and this particular hopeless dream just happens to be my reason for getting out of bed in the morning.
So yeah… This is the other narrative of my mini-break with my mum. I gave up completely, and then I got up the next day and tried again. And it wasn’t so bad the next time, my body wasn’t so outraged (it wasn’t happy, but I could function). To be honest, I expected to be left very unwell again (and I’d felt unwell enough to decide that swimming wasn’t worth it, and if you know how much I love swimming, you’ll understand how awful I felt). But this little part of me was kind of defiant. It was curious. It wanted to try again, with no expectation of itself, and then anything felt like an achievement.
I guess the point is (oh hey I seem to have just thought up a point to this post) don’t give up. Three words that are so easy to write but so difficult to stand by. Perhaps a better way to say it is…
Do give up. Stop. Stand back. Detach. Pause. And think. And let it all go, give up, give in. It’s ok. When you feel like giving it all up and letting it all go, you probably need to. It’s your mind’s way of asking for a break, I guess. And give it that break. Let yourself breathe. The crushing weight of the feelings that drove you to want to quit is unbearable, and giving into it feels so right and so wrong all at the same time. Don’t give up on yourself, or on being on the planet, but briefly let yourself let go of the things that your REALISTIC thought processes tell you that you need to step away from. But wake up the next day, and even if you don’t want to, even if you think it’s pointless, try again. And see what happens. And if it’s crap, then fair enough. But if it is crap, my brain occasionally kind of whispers “one more chance, one more time” and then I (very, very stupidly) try again, a refusal to accept my incapability makes me repeat the process over and over, trying and failing in hope that one day I will try without failing. Is life about the results? Or is it about the journey? I don’t know. But I do know that perseverance is difficult. I also know that it pays.
No way but through.
(On the subject of water, I’m kind of reminded of the weather (yes, how stereotypically British of me to talk about the weather). But the weather here right now is weird. Yesterday my mum and I drove home to 32.5 degrees of heat. Today as we drove to see the new Bridget Jones film, the sky was so thick with cloud that it was dark, it was only 14 degrees. It has rained non-stop all day causing flash floods all over the country – train stations have had platforms submerged under water, motorways are flooded, so many towns have lost streets and streets to feet of water, a landslide derailed a train and pushed it into the path of an oncoming train… I mean… British weather is a temperamental beast. Summer one day, almost winter the next! But I kind of love it. It’s been so humid – and strangely free of rain – that we’ve all been hoping for rain for days!)
Sometimes you stumble across moments in life that make your thoughts stop and your mind boggle. They are weird little moments where a realisation hits you, and things slip into place – impassable mountain ranges falling at your feet as the tectonic plates of whatever you were facing move apart. They are moments that you don’t reach alone. They are moments that you never think will come, and they wrap you in the security of knowledge… a new knowledge that not everything will be ok, but something will. This something, the something that relieved the pressure… I thought it was the thought of running again (a journey which I have started blogging about here – please feel free to check out my new blog if you haven’t already, any support at all is much appreciated). Being given the go-ahead to try to build up to some form of exercise again took the tension out of the rugged landscape of my mind, and, although it didn’t flatten any mountains, it gave me the equipment that I’d need to scale them, to face the future no matter how much I didn’t want to. It made the volcanoes that had been spewing suicidal thoughts become dormant, prone to quiet rumblings and occasional steaming instead of violent eruptions that killed my determination.
But I now know that people do that too. A small part of me remembered that they could, because my uni-parents did exactly that last November. They flattened landscapes, and when I fell through the cracks in rock bottom that opened beneath my feet, they walked through the fiery magma alongside me… But it burned them, and like everyone I’ve ever depended on, they backed away and I was left alone. I’ve never thought of myself as somebody worth standing by, as somebody who anybody would want to be there for. I am a drain, and I am fully aware of that. I sap life out of all those around me, and I watch it in their faces. It kills me to watch it, and being unable to trust tears me apart… so I withdraw. I retreat. I end up even more alone, and I feel even more of a burden, and it spirals and spirals as I grow more and more distant.
Along with the amazing extra family I have gained across the pond (the best thing that has come out of this blog – you know exactly who you are), two friends have been there throughout this summer. Neither of them really knew how to be, neither of them really understood or appreciated the depth of what I was going through, but for some reason they stuck by me; and when the downward spiral began, although I still ended up in some very dark places without their knowledge and nearly did some very drastic things, they unknowingly pulled me back a little at times, when there something left for them to save. A lot of the times the things they were trying to talk me through were bigger than they were. A lot of times my fellow third wheel was miles off the mark and I became frustrated… but they were willing to do what nobody else was – be there. Try. Try to find words, give up finding words, join me in the crapness of it all, laugh and distract and push me to talk about things that I never can to them. Even when I didn’t ask (knowing that I never would and didn’t know how to). Even when I pushed them away. That isn’t enough to save a person. It isn’t even enough to make things feel better, until you’re through the worst, and you’re past the moment that I described in the first paragraph of that post. And then you look back and pull all the good from the wreckage that nearly took… you.
And today, with the thought of running again playing on loop over the roar of the sensation of impending doom, I had my moment. Today I was reminded how amazing it feels to not have to face physically go through things alone (I am at the stage where nobody knows the full situation, and I no longer want them to. Nobody is physically there, and I no longer want them to be. I prefer to keep them at an arm’s length from the things that are tearing me apart. Like I said, I withdraw. I don’t talk. I’m not good at it. It’s the whole reason I need this blog). When you let the big things go, you can appreciate the beauty of the little things. When you step out from underneath the shadow of fear or dread or somehow make it through the feeling that the only way to get through is to never meet the future at all… Life gives you this brief moment to inhale. To breathe. To feel anything at all, one more time. And the strength that you had to build to hold up the weight of everything for so long… It makes you a force to be reckoned with. It makes you do stupid things, like decide you’re going to run a marathon next year. And you’re hollow, and you’re hurting, and you’re numb and you don’t even know how to feel again let alone what to feel, until someone picks you up and pushes you on.
Uni Pal pushes me on. A lot. We made a little pact to train for a marathon together (actually, she told me I had no option) and the second slightly tipsy me told her how I’d been feeling lately, she made me promise to tell her any time if I felt like that again. I said yes and meant no. But today we were messaging. And she asked about my (minor) surgery next Wednesday. I’m going through the whole thing alone, and am not allowed to leave the hospital alone afterwards (because hey, general anaesthetic). They told me to take somebody with me. But I have nobody to take with me. My mum already made plans with her friend… Not that I’m even really sure I’d want her there. I never usually have anyone there when I go into surgery, or beforehand. I just message people when it’s over, and if it’s something I’m scared of, I say a little insurance “you need to know how much you mean to me” the morning of the surgery. I’m sort of just used to doing health stuff by myself. I’m used to carrying the weight. I’m used to the emotional injuries inflicted by being crushed and buried under that weight. And then Uni Pal asked if anyone was going with me, and I said no, but that she didn’t need to worry. She asked what time Id be getting there, because she lives so close to the hospital and can drop by before she starts work at 9, and I told her not to worry because hospitals. Eventually, after asking and asking she just put,
“And also 7am is not that early, see you there” (and then the banana emoji, because as I mentioned before, when I’m an idiot she calls me a banana, so we call each other banana pals… it’s weird but hey I like it)
“As long as I leave by 9ish to be at work, that’s absolutely fine”
My response was a shocked face and an entire line of crying faces. I think that sums up my brain’s reaction rather well. I didn’t cry, but I had a moment. A moment like the one I started this post by describing.
“I don’t even know what to say to you, you” (and then I put the banana emoji, because I thought she was being stupid to burden herself with me) but I couldn’t even express what was going on in my mind, the complete shock. The… nice… shock. I tried again
“I… What.” Nope, I could not words.
“Don’t be a (banana) of course I’ll be there!!” and the message finished with “but it’s now in my diary so”
And that was it. Genuinely, that was it. There was a huge tectonic shift inside of my brain and all these mountains were flattened. I wanted to dive into my phone and hug her. I smiled, one of those great big uncontrollable ones. I stood up. And I looked back from a different point of view over the summer that almost completely broke me. I don’t know what I would have done without my Uni Pal.
And this isn’t the post I was supposed to write. I meant to say this:
After yesterday, I view my little brother as an actual human instead of an extension of his games console, and it was just the two of us home alone with my dog, so I decided to order us both pizza for lunch with some of the last dregs of my student loan.
Uni mum replied to the message I sent her 8 days ago, asking if tomorrow would be a good day to FaceTime and also enquiring as to whether or not I have my exam results yet. Hearing from her made me STUPIDLY happy, and Uni Pal was stupidly happy for me because I had to share my stupid levels of happiness with her (she knows uni mum is one of the only two people on the planet that I trust and can talk to about ANYTHING. She’s flaky, and she drops me like a hot brick for no reason and ignores me for months at a time, but when she’s there again none of that matters and my brain gets all… Yeah).
Just as I was tucking into my half of the GIANT pepperoni pizza we ordered, one of the hospitals I go to in London called and asked me to go there today or on Monday so that they can check out Skippy (my heart) before I have my general anaesthetic on Wednesday.
Someone I met through this blog, who makes me feel like part of her family, asked me to be part of a project she is starting (we also hope to some day write a book or two together) and I was SO touched because I know the story behind it and the amazing little girl that has inspired it all, and I’m honoured to even have been thought of.
I started packing for uni last night, and immediately found myself in HEAVEN. I got so ridiculously excited and I was messaging my fellow third wheel and he got excited with me (especially as he will be coming to stay with me at times), and then we both got excited about the mini-breaks we have coming up, and we just had random conversations until the early hours of this morning (we do this most nights, but last night we were both just in super good moods… Until the end). I found a couple of self-help fill in books while I was sorting my stuff, and discovered a heavy repetitiveness of what was getting me down. There were three things (number 2 was most consistent, number 3 was only when I was in my parents’ house).
My health is so much worse than anybody knows, I might die, and nobody knows. I don’t know how to cope alone and I can’t talk no matter how much I try to, and I don’t trust anyone.
“I want to run/ swim/ sail again” “What if I never run again?” “I need to go for a long run, that’s all I want” “I miss sport” “I can’t do any of the things that made me who I was, and now I don’t know who I am” “I wish I could run” (didn’t realise quite how much of a deal this was to me until I say stuff like that on almost every page, which is why running again is going to cause such a transformation in my mental state). On one page it had a huge box that said When was the last time you were happy? and all I wrote was “Last time I went for a run”…
My dad (technically stepdad) makes me hate myself. I’m a huge disappointment to him. He hates the very fact that I exist. He doesn’t talk to me unless it’s to criticise me or to shout. I will never do right by him. He doesn’t even need to pick holes in me any more I already hate myself on behalf of him, over time he’s taught me that I am nothing, without even having to say the words. On one page it said, Name things you’ve never done (but want to). I wrote the expected stuff, like “get a degree” and “learn to surf” and “go on a camping holiday” but I also wrote “Feel good about being me” and “Make a difference to someone in a +ve way” and “Feel part of a family”
Anyway, I apologise for boring you with such slushy ramblings, but today I was blown away by the amazingness of human kindness. But yeah. Good times. Really good times. I’ve still been unable to start my walking milestone for this month because my body is (somehow miraculously over its acidosis when it really shouldn’t have even got through it without hospital intervention but) still wiped out and rather unwell because my blood is all out of whack (in account of the fact that I usually end up having a bunch of other IVs to put all my other levels back to… safe… and that didn’t happen this time because I couldn’t face hospitals).
One person today offered me pity. They seem to think my situation right now sucks. It doesn’t. Right now, in this moment, there is so much good to be found on the faces of the mountains I am still trying to climb. I am empty, I am fragile, I am downtrodden and struggling to cope at all. I am lost and I am trying so hard to find… anything. But there is today a stunned disbelief, a whisper of reassurance. So much is not ok. But something is. And I plan to focus on the “something” rather than the “so much”. Force positive thoughts until my brain accepts them and starts generating them spontaneously, is my latest logic.
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).
My health hiccups are like a superhero costume. I keep them under wraps, a private spectacle that I shield from the attention of those around me. I don’t wear them on the surface, they do not show there. Like a superhero, I pass for an ordinary person, masking what goes on within, hiding the differences between me and the rest of the world. I wear this thing that so many people have heard of but do not fully understand, things that, if I were to wear them out in the open, people would stare at just like a superhero costume, things that would detract from the person beneath the super-suit and gain me far more attention than I would ever be comfortable with, things that people would label me a freak for, things that make people view me as an alien (just like they did to Superman).
And that’s what life with health hiccups is like, I guess. You carry with you this mysterious thing that people have heard of but are not aware that you have unless you tell them it is there. You wear this superhero costume beneath your clothes, sometimes even beneath your skin. Nobody understands what it is like to live with it, the duties it binds you to. But it forces you into a role you did not ask to occupy yet are obligated to maintain. It forces you to find a resilience within yourself that you may otherwise never have had reason to stumble across.
The presence of this superhero costume means that sometimes you miss major events – birthdays, Christmases, family gatherings, social meetings… To do what those who wear the suit are required to do. But it isn’t a citizen in distress that calls you, it is your own body, your own cells, calling you to bed and keeping you there, or calling you back to a hospital. Without warning you are required to respond to the situation as it demands, just like people in comic books who wear actual superhero costumes. And then quietly, after the toughest fight of your life, with the superhero costume of your health hiccup(s) torn and fresh wounds raw against the façade you wear in public to cover your abnormality, you walk back into normal life. And only the thing that you saved understands the achievement that this is – you, your own body. Only your doctors watch on in awe as you do things you probably shouldn’t and prove that your body is a little superhuman, they know you wear the superhero suit. They know that you wear a suit consisting of many health hiccups swirled together, and they stitch it back together when it falls apart and your health falters. But you don’t show it off. You smile subtly, you button the shirt of normality over the superhero costume of your perceived weakness, and you walk side by side with everyone else until you are called to fight again. They have no idea what it is like to carry that weight on your shoulders. They have no idea the sacrifices it has forced you to weight or the things it has taken, or the way it has affected everyone you know.
The difference is, I don’t feel super. I wear my health hiccups like a superhero suit, in that I hide them. They are not obvious, and yet they are ever present, always there – just like a superhero costume, and because of that constant presence, they could call me into action at any minute… It makes life a bit of a waiting game – a waiting game until the next time the length of that life is threatened or called into question, and the tension of that is at times notable. Except there’s nothing I can do. It is down to my body, and that is the bit of me that is superhuman. A couple of my doctors joke and tell me that I’m some sort of superhuman to make it through the things I go through so frequently and remain so unscathed. I bounce back remarkably quickly from pretty desperate situations – doctors tell me I’m lucky, that the next time will be the last time, or that I am in a game of Russian roulette and have somehow survived tens and tens of consecutive shots from a gun that only has six barrels, such should be the impossibility of my body getting up and carrying on. And yet it does. It ends up in a wheelchair. It ends up unable to lift its own head, unable to breathe, bedbound, or in ICU or CCU… But it always always (given a surprisingly short amount of time and stupid levels of determination to defy all odds against me) carries on somehow. And the people I know take that for granted – very few of them have seen how unwell I am. Very few people appreciate how outstandingly ridiculous my body is in its ability to survive things that every time they are experienced have the power and a scarily significant potential to kill me within hours, and very nearly do. They have no idea that I wear that superhero costume. And I am embarrassed to wear it still. I feel like a freak and I am ashamed because those are attitudes that have been instilled in me by other people.
Myhope is that one day there will be no stigma around health issues, that one day people my age and younger will not button them up beneath shirts of normality, but instead will wear their health issues like superhero capes, flying free and proudly behind themselves, trailing in the slipstream of their achievements and ambition instead of wrapping themselves around the people who possess them and having their presence ever felt. I am in no way super. But there are a large number of people whose health truly does make them superheroes in the way that they overcome it, and they walk in plain sight among us, hiding their colours. There are some incredible people who wear visible signs of their health issues on the surface of their skin – NG tubes and stoma bags and wheelchairs and IVs… There are people who cannot hide. I have been in the situation of not being able to hide, and I am deeply ashamed to say that there were times when I wanted to melt away or evaporate and escape my own skin. But there are people amazing enough to have the power to embrace these things. I hope one day superhumans can just walk freely among us. I hope one day none of them have to hide, that they all wear capes like some already do.
The costumes I talk about these people wearing are not made up of lycra and logos and symbols – they are (for example) surgery scars, ostomies, permanent lines, transplanted organs, missing limbs, genetic conditions, irregularly shaped blood cells, poorly functioning immune systems, organs that will not function in the ways they are required to do so, mental health problems, “invisible” (yet debilitating) illnesses, eating disorders etc. … They are things that a lot of people could not imagine living with, things that cannot be obviously seen in most cases. They are things that the healthy use to define and label and write-off the people who carry these things with them. They are things that at times those people feel or felt the need to hide from knowledge and (where possible) from sight. They are things that give those people an appreciation for the simple things, that give them a determination and a resilience that is unheard of, that force them to display a strength that they do not believe is there. People like that are people I look up to. They show me how stupidly pathetic I am. And they’ll never admit to it, never even believe it, but their achievements are superhuman. The difference is that most of the time they will feel inadequate, they will not believe anybody who calls them brave or strong or whatever because in their opinion they are not; they quietly continue with their lives, struggling silently, fighting emotional battles as a result of the things they are forced to deal with on a day-to-day basis; they feel like burdens, like weights around the ankles of the people they care about which drag people below the surface of this ocean of life that we are all helplessly thrown around in.
I’m sure we all know at least one superhuman (I can think of one incredible little girl across the pond, whose “power move” is her INCREDIBLE and ever present smile).
And I bet most of us don’t even know it. Because they aren’t displayed on the surface. They aren’t obvious. But they make us different. They set us apart. They shape us in ways we might not want, but in my case I am thankful for the things I now appreciate in ways I never would have without the things I have been through.
At the minute though, my superhero costume needs patching up. Lying in bed last night my heart had a little party. I became incredibly dizzy, couldn’t find a peripheral pulse, and could only just feel a very, very weak and thready pulse in my carotid artery. I developed a horrible headache, I couldn’t breathe unless I propped myself up with pillows and even then felt like I was breathing soup. After just minutes of this feeling, the intense crushing ache in the centre of my chest spread out to my neck and shoulder, but I was flopped on the bed like a beached whale. I didn’t have the energy to move my arm to pick up my phone, I couldn’t move. I didn’t have the breath to call for help. So I let myself slip into unconsciousness and hoped I would wake up. I did wake up, but my heart felt strange and breathing was difficult unless I sat up, which I didn’t have the energy to do. It was uncomfortable and alarming. I cheered Mo Farrah as he won his third gold medal, and then passed out again. I messaged my fellow third wheel eventually and he asked me to please go and get some help. I passed out again before this even happened, and when I came round half an hour later I was too dizzy to move. All day my heart has felt weird… Just weird. And I can feel the other hiccup (that my consultant wanted to hospitalise me for a couple of weeks ago) deteriorating alarmingly (and it was already in the early stages of a medical emergency).