Carrying On

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!)

No way but through.


The Void

“Maybe the journey isn’t so much about becoming anything. Maybe it’s about un-becoming everything that isn’t really you so you can be who you were meant to be in the first place.” – Unknown

The health hiccup that was yesterday made me think a lot today. I woke up this morning, and I’m not sure at the age of 20 that’s meant to be such a surprise. There was still a needle stuck in a teeny tiny vein between my fingers, and I seemed to have painted most of my hand and face (and most of my medication) red as a result. But hitting a vein was good, because it meant I’d been able to administer IVs without having to ask anyone else for any help. Cheating death was good. Avoiding hospital was excellent. What I saw in the mirror was not. What I saw in the mirror made me stop and think a lotThis isn’t who we were supposed to be. My reflection and I stood, palm to palm – both pale and grey, our eyes sunk in their sockets, ribs visible all the way down the centre of what was exposed of our chests. Both lucky to be alive. Both stupid. Both looking about as unwell as I had felt the night before. And we both wanted to go for a run.

One day I will stop pining for the things I have lost, will stop naively hoping that they will once become a part of me again. Until then, I’m going to write about who I was. Sort of. I sincerely apologise in advance if you couldn’t care less find it boring.

It has been at least four years since I went for a run between hospital admissions (other than the time I tried to run and ended up in an unconscious heap on the floor but let’s not go there), and yet I still call myself a runner, still hang on to running shoes and clothing, still even buy more of it, in the deluded hope that “this year” is going to be the year when I can slip back into the guise of who I was. It has been four years, and yet I still remember exactly how it feels to run; effortless, freeing, cathartic… It has been so long that most of the cells that currently make up the pair of legs I have right now, have never moved at anywhere near running pace. And yet, I still think of these as runner’s legs. They still get twitchy and and fidgety and yearn for a long run. They don’t seem to be made to sit still, and often the fact that I can’t run makes me incredibly frustrated at the reasons why I am unable to.

Running, like a lot of things, saved me. People could always bully me, hit me, belittle me and put me down, but they could never silence my feet. I remember PE lessons at school in my early teens. This one time I’d had a pretty rubbish day, and they just stuck us on the 400m track and told us to run as far as we could in 12 minutes. I outran all of the girls, and all but one of the boys, including the football team (but not my marathon running PE teacher, who managed 1 1/2 laps more), and it shut everybody up for a bit. There was even a little bit of admiration, for the first time. I’d literally managed to outrun my problems (or at least, the people causing them). If I’d had a bad day… I went for a run. If I had a fresh bruise… I went for a run. If I was bored or lonely or angry or scared or starting to hate myself a little more… I went for a run. At least 3km. Every day from the age of 12. Even in the pouring rain. Mostly with my dog, sometimes without him. It made everything ok. When I ran through bluebells in the woods or muddy fields or even hard pavements… Nothing mattered. Every part of me felt like it was smiling. And I couldn’t screw up at running. It was my crutch. It was the highlight of my day, every day. I’d sit in classrooms staring out at the running track painted onto the grass of our school field, and just want to go.

And don’t even get me started on the boat. Put me in a laser (small racing dinghy) and you’ve essentially placed me in heaven. In my early teens people noticed that I had a weird luck (they say talent, I maintain wholeheartedly that it was luck) in a boat, of managing to win most races I started, even against older boys (seriously, I have no idea how, there was very little thought involved on my part, it was just fun, the adrenaline of it all, which seemed to annoy everyone else even more). I have my own laser. I haven’t sailed it for… Two years(?) Now. It’s in a barn somewhere because I can’t sail it any more without ending up unconscious in the water beside it (thanks heart). I swam with a team. I played football (but gave it up after I messed up my leg)…

The point is, these were the things I thought I was going to be. I thought that these things were going to be consistent in my life until old age. I didn’t know what to do with myself without them. They were what I wanted to do and who I wanted to be. I didn’t care what else happened in my life, as long as sport was there to get me through. Other than my art (of which I am still highly self critical) it was the only thing that sometimes made me feel like I was good at something. I couldn’t wait to go to university and join a bunch of sports teams, to be given the opportunity to compete more regularly and meet the kind of friends that you only seem to find through sport (in my experience).

These things were wiped out of my future years ago, and I still don’t know who I am without them. I still crave them. I still feel lost. And I still refuse to admit that I’m not the person who would jump out of a boat and swim over to un-capsize one of the younger kids’ boats, or wade through thigh-high mud to free boats that’d got stuck, or teach the little kids to sail while racing at the same time. I can’t sprint when I’m angry and I’m pretty sure I’d lose every single arm wrestle now. I am not that person and yet… I can’t let go of her. She was strong, and she had health problems that complicated life and meant fairly frequent hospital appointments, but they hadn’t brought her to her knees. She was at home in herself when she was participating in sport… But she’s dead. And I still don’t know who I am without her.

The thing is, without her, other parts of me have been given room to grow (admittedly some awful thoughts and stuff, but there’s been a lot of positives, on which it is important to focus after days like yesterday). I’ve written a couple of novels (which mean too much to me to ever publish. I think). I’ve made some incredible friends through hospital admissions and at university. I started blogging and discovered the awesomeness of the blogging community. I learned the value of the simple things (of EVERYTHING actually), and stopped stressing about things others aren’t so fortunate as to have been able to put into perspective. I broke many times, but always tried to pick up an extra piece from the gutter as I gathered the fragments of myself to re-assemble them. I learned a lot about people, about life, about what matters… About myself.

Although I still claw desperately at who I once was, and have almost no self confidence, I am slowly allowing myself to become whoever it is I now am. The bracelet I wear on my arm is right – I need to let go or be dragged. But letting go is hard. Letting go of everything you ever knew is so, so hard. Letting go of shame and guilt… Is almost impossible (they seem to have a vice-like grip, at least on me). My grandparents went out to enjoy the final day of the french weekend in Sandwich this morning, and I let them go without me. I couldn’t stand to see them struggle with my wheelchair, and I couldn’t bear to sit in it. These legs were made for running. I am meant to be pushing you. I thought at them as they tried to persuade me to go. I don’t want sympathy or pity or stares, I want to hide, to blend in… To WALK. 

They bought back a crêpe to the version of me stuck somewhere between letting go and accepting change… And I still haven’t told them that the reason I’m spending the day in bed is because my body can’t deal with anything but that after it’s brief conversation with the grim reaper yesterday (he didn’t get to shake our hand this time, let alone let us into his home). I can do nothing but sleep (and watch snippets of Breaking Bad), and if the pillows were not holding me up then I would not have the energy to hold myself. I am so far from the strong, sporty person I once was, and more than ever I long to be her.

So today I keep telling myself that this is it. This is who you are meant to be. You’re lucky. You’re alive (still genuinely no idea how). And this is all going to be ok because hey, it already is. You will figure out who you are, because everybody deep down inside of themselves, is somebody. 

“Fear, uncertainty & discomfort are your compasses toward growth. We must let go of the life we had planned, so as to accept the life that is waiting for us” – Joseph Campbell

Sometimes I wonder, is there anything waiting?

Sometimes it feels like I am falling into a void.

And sometimes, I feel an overwhelming urge to kick those feelings from my mind. Because I am not what I am. This “ill” person cannot possibly be me. (See, not so great at the letting go thing).

There is a void inside of me that I don’t know how to fill. But this time, I feel too appreciative and lucky and grateful for the fact that I’m still alive, to fall apart. I’m not scared by yesterday – a little shaken inevitably, but not worried any more. There is no room for that. It seems to have been lost in the void of wherever the rest of me has gone. I am focussing on the positives, and I feel truly grateful (and a little bit invincible, as always occurs after a major health hiccup and unexpected survival). I’m smiling on the inside, I’m appreciative, and I haven’t fallen apart yet (somehow).