… but it pours

I’m sat writing this with eyes full of tears that I can’t let myself cry, because I am trying so fiercely to shut out the reality I thought was no longer mine. It’s amazing how long and steep and exhausting the road to where a normal 22 year old should be is, and how quick and effortless the fall back to… this… is. So you’re going to have to forgive me, because if I don’t write this down, the tears won’t come; and if I don’t tell myself I’m going to post it, then I won’t let myself write it down. Ironic really – I’m living the situation, but I can’t handle it staring back at me from a screen. The only way past this wall of emotion is through it. So here we go…

I love my masters degree. It sets me alight, and it gives me a drive, and it has been my focus in a way my previous degree was too overshadowed by health hiccups to ever be. The people on my course are incredible, and all but two of them are totally unaware of my health issues. I hadn’t planned on telling anyone anything, and then last week happened. I’d been finding day-to-day life harder and harder and more and more exhausting. A half a mile walk to the bus stop felt like a marathon and left me with palpitations, coughing up foam as I waited for the bus to roll in and hoped there was a seat. I thought that was just because I’d tried to be like everyone else before my heart was quite ready to allow that (and my pacemaker is set in a way my heart doesn’t agree with). And then I realised there was something rather wrong. I realised too late really. I realised as I was sat about to pass out in a room full of people who thought I was an everyone else. I sat there, my vision swimming, my hearing gone, my head floating to the ceiling of the lecture theatre, and I couldn’t let my heart do that to me again… So I somehow held on and managed to leave. But I ended up in hospital almost as soon as I had managed to leave my course-mates behind.

Long story short – my heart baffled everyone who saw my ECG tracings except me. And then in walked a cardiac physiologist who has worked with me at the specialist heart centre I am usually seen at, and he saw the changes too. It wasn’t just that my pacemaker settings were inadequate (although they are), my heart has decided to fight the things helping it again. It has managed to do new versions of things that were baffling the first time they occurred… And thrown some totally new things into the mix. Essentially, my heart gets so confused by its own electrical system that it can’t fill the main pumping chambers, so they beat when they’re empty, and I get mad chest pain and palpitations as everything wriggles about to try and compensate, until my brain pulls the plug and I hit the floor for a little bit.

I ended up in a hospital with consultant cardiologists who didn’t understand the physiology of my heart (my normal), let alone its abnormal behaviours. The only time I cried was when I woke up one morning (on a ward where I was the youngest patient by about half a century) and some delightful human had stolen my bank cards, my ID, my everything, from the drawer beside my bed. The rest of the time, my brain was so overwhelmed that it just added a new layer of apathy and numbness over everything. Emotionally, I shut down. It was a protective mechanism against the bad things, but it also meant (and still means) that the good things don’t feel good any more either. I got really, really lonely (not that I was awake a lot). I just wanted someone to be there, someone to talk to, and the situation was becoming a bit of an elephant in the room. So I told two of my friends from my course. Nothing specific at all, just that my heart is, and for quite a while has been, a total arse. Their reaction was pretty incredible, and perfect – unlike anyone before them, they got to know me without even knowing my health was a thing, so rather than my health being a barrier they couldn’t see beyond, my personality did that instead and blocked out the health issues.

I’ve never been well enough to get a job, and to support myself through my studies I’ve made lists and lists of jobs to apply to. Because I thought I was an everyone else. And now I honestly can’t stand for long. I walk along bouncing off things, drunk on a lack of blood to the brain. I don’t know what I did for the last 24 hours, but my existence at the minute swings like a pendulum between nerve pain and me being completely out of it and drifting in and out to the music that is currently holding me together, so it was probably just that.

Today I applied for a PhD. Today all I could think about was how I need to contribute somehow to stopping someone else’s life slipping because of a ball of muscle beneath their sternum. Tomorrow I go to the heart centre with the only guy in London who understands my physiology and the wonders of Skippy. I’ve spoken on the phone with another member of staff involved closely in my care. He’s got nothing. When Skippy goes down, the other health hiccups hiccup, so I’ve been speaking to other humans too (I felt a bit better about not feeling emotionally great when the nurse at the other end of the phone was left speechless by the turn of events). I’d come so far from here, how did I end up back here again? And how on earth did it happen so quickly and so… sneakily?

I could walk my dog, I was doing my degree, I’d moved out, I was almost well enough to apply for jobs and support myself financially (when all my feelings hit, the financial stress is going to BREAK ME), I was living an independent life, I was functioning. I wasn’t well, but I was well enough to pretend I was (if that makes any sense). What I didn’t know about couldn’t hurt me. It wasn’t raining. And then it poured.

I don’t know why I put myself through this. From a non-emotional stance, it seems like a lot of effort and a lot of surgery just to propagate more unpleasantness. I’ve shut that thought down by living very much in the present. No looking back at what my heart has just taken from me again, I can’t go back and hold on, so why watch the past get more distant and further out of my reach? The future is something my brain can’t compute. But I don’t want to give up, and I don’t want to give in. So I curl in the comfort of each second – where the past is behind me and the futility isn’t here yet – and then I hop to the next second, and the next, until I pass out. I don’t think I’ll be well enough to do a PhD. I didn’t think I’d be well enough to manage a masters, and so far my attendance is already less than 75%… 4 weeks in. But that is not the thing that matters. What matters is that I didn’t think I’d get through my first degree and I did. I remained on a planet that several of my organs were so desperate for me to leave.

It’s raining so hard that my world is flooding, but everything still stands. When the waters subside I’ll come back to it, save what I can, plug in a few dehumidifiers, replanted the walls, and come home to the life I refuse to leave behind again. I just want to give something back, and I was so close to being able to do that.

“Look, I didn’t power through the struggle

Just to let a little trouble, knock me out of my position

And interrupt the vision

After everything I witnessed, after all of these decisions

All these miles, feet, inches,

They can’t add up to the distance

That I have been through 

Just to get to a place

Where even if there’s no closure I’m still safe

I still ache from trying to keep pace

Somebody give me a sign, I’m starting to lose faith

 

Now tell me, how did all my dreams turn to nightmares?

How did I lose it when I was right there?

Now I’m so far that it feels like it’s all gone to pieces

Tell me why the world never fights fair” – Home, by Machine Gun Kelly, X Ambassadors & Bebe Rexha

Still can’t let myself cry, that feels far too much like giving in. So I’ll stuff all of the above back into my brain, and play music loud enough to keep it at bay.

No way but through.

The trouble is, what I’m going to have to go through is kind of unpleasant. Oh well.