“No More Cold Defeat”

I did it. I finally did it. I completely gave up on my healthcare teams (y’know, the ones that are trying and failing to stop the grim reaper attempting to drag me off so often). I stopped hoping and asking and fighting with myself for their help, and I accepted that they are as stumped as I am, that when you go wrong in a complex way that is complicated by other factors, there aren’t going to be the answers you want, and that there are currently no answers.

I’m still going to go to my appointments and co-operate and all of that stuff, but there won’t be any of the frustration and desperation of running into the brick wall of their unwillingness or inability to find something to stop my body meeting the grim reaper so often. I will be passive instead of pointlessly trying to have some involvement with the health hiccup that is bothering me the most. I feel out of control of where my care is going, and frustrated that we aren’t moving forward and that I see so many consultants in so many different hospitals JUST FOR THAT ONE HEALTH HICCUP without the other stuff.

The only way to get over that is to give in, to stop trying, to stop bleeding emotion as my mind cuts itself on the knives of reality and fear and what ifs.  The relief of that sudden occurrence is overwhelming. I feel like I’ve been stuck a mile underwater in the dark, being crushed by the weight of an ocean, and I’ve finally broken the surface to find myself surrounded by dolphins just off the coast of a tropical island, breathing for the first time just as my body was about to shut down from a lack of air.

Yes, I am going to become life threateningly unwell until the current front-runner (in the race to drag me 6 feet under) of my health hiccups is fixed; yes, they currently don’t know how to fix this situation (but even if there was a way, the team who let me down before with regard to the current front-running health hiccup, are now back to not really giving a damn again). Yes, I am far from well and will only ever get to a functional level of unwell which can pass for healthy in ignorant eyes; yes, my body is a poop and it is tearing everyone and everything I have ever known into pieces too small and too fragile for me to catch or to stitch back together… And I can’t control that. Any of it. I have stressed about it to a point where I can stress no more, worried to a point where I have nothing left of myself to throw into such an emotion. I know and knew and have known that things really aren’t good right now. I have been living within the limitations that this knowledge imposes, and narrowing my options even more by trying so desperately (and, may I add, with immeasurable futility) to slam on the breaks myself. I have been desperately clutching at straws and I’m still dying of dehydration, and even if there were straws, there is no water for miles (that metaphor makes no sense outside of my brain I feel, but it can stay). And right now an occasional thought rules: Whatever will be will be.

“Let go or be dragged” – Unknown (apparently it is a Zen Proverb)

It was time to let go. I don’t know when I made the decision to, I don’t think there was a defining moment, but at some point between making up the result of a blood test to appease a consultant, and buying myself all new swim kit while looking up membership fees to the London Olympic Aquatic centre (which is right near Mile End where I live, and where I’ve now decided I’m going to get a membership and try to swim every day before lectures – this may be is pushing it MASSIVELY, but my body is going to have to deal. I am done with its stupidity), it happened.

Turns out I just had to give up and lose all faith and reason to go on and hope in there ever being an improvement in my health or of living the normal life I dream of, to find another life I never dreamed would return, and to find exactly what I gave up – faith and hope and a reason to go on. Admittedly I found these things somewhere else. In a pool, to be specific. I had to give up on one thing to move onto another. I had to sacrifice sensible. I had to take a leap into the unknown. And it was the easiest choice I’ve made in a long time. I haven’t had any cardiac symptoms for a while, and my cardiologist agreed that I can start attempting some mild activity – nothing strenuous, and I’m guessing not beyond the threshold at which Skippy starts to protest, but I think all of my doctors now know that generally speaking, when I want to do something, it is going to happen with or without their support (with a couple of exceptions). I am a determined and frightfully stubborn little thing.

Seriously though, spending so much time and thought on a situation I can’t change (despite the fact that it has a significant impact on me and whatever lies in my future) has been exhausting and, I feel, natural. But it is time to get over myself again, time to stop scrabbling around in the mess I am surrounded by and bring in something new, something I left a long way behind me. In a weird way I’ve been living in fear. Fear of my body, fear of whether walking that little bit extra is going to put me in hospital, fear that my body is going to bail on me again. But I’ve accepted the fact that it will now. I’ve accepted the fact that it is going to stop me going on the family holiday. I’ve accepted that I won’t be able to run or use a gym membership or anything. And in turn, my body needs to accept that it is going to swim. I don’t care how much it protests. It. Is. Going. To. Swim. I’ve spent money now, that’s how serious I am.

“She believed she could so she did” – Roald Dahl, Matilda

Just the thought of swimming again was enough to give me the focus, drive, determination, and happiness that sport once did. Seriously, it was bizarre and so, so welcome. In combination with the acceptance that, until a doctor first got all dramatic and started telling me I could die, was a common thing in my mind… I felt a little on top of the world. I moisturised after my shower, because suddenly there was a point in showering today. I took a couple of dumbbells and decided to remind my biceps how to function. I attempted some sit-ups and push-ups and gave up with the plank after about 6 seconds because I felt like I was going to pass out and my heart was going VERY FAST. And yes, when I was 12 years old I could do 500 sit-ups without any bother at all, could do 50 press-ups and hold the plank for 5 minutes, at which point I stopped because I was bored… But I am not trying to be that person again. I just want my body to freak out (if it is even going to) before it is surrounded and partially submerged in gallons of water, because if Skippy (my heart) is going to freak out, I’d rather he did it on dry land this time. I don’t want Sunday’s swim (oh yeah, that’s a thing. We’ve planned to go and sign up on Sunday and also go for a swim while we’re there)… Anyway, I don’t want Sunday’s swim to be a complete shock to my system. Also, I’d like to be able to propel myself through the water at more than a snail’s pace, because without any forward movement I’m pretty sure I’ll sink.

In an ideal world I’d go for my morning run from my accommodation opposite my uni in Mile End, to the Olympic park, and then swim in the aquatics centre for an hour or two before walking or running back to campus and going to lectures, because THAT is how you start a day right. Then I’d do my work and see my friends and probably train with one of the many sports societies that as a younger teenager I thought I’d be part of when I started university.

In reality, I will get the tube one stop along the central line to Stratford, and then I will walk through the largest shopping centre in Europe (don’t hold me to that, it might not be the largest) to get to the Olympic park (at the minute that short-ish walk kills me, but GENTLE swimming is less strenuous than walking right?)… And diving into that pool will feel a thousand times more fantastic than it would if my body was what it used to be, because it will be defiance, and achievement, and overcoming, and a huge great middle finger in the face of everybody who told me I wouldn’t survive stuff. I will walk in the footsteps of the swimmers who smile at me from posters they signed for me, which have been stuck on my wall since I was 11 or 12. And then hey, I might fall asleep in my lecture. I might have to sit around for half an hour before I can even walk to get on the tube and I might even have to get the bus (because let’s face it me and stairs do NOT get along at the moment). There will probably be chest pain if I overdo it (and after being pushed and pushed by coaches at training sessions I don’t know how not to do that, but I am determined to learn in order to be able to keep on swimming). There will probably be a few hiccups from my heart because any exercise always used to trigger it before even walking became too much and I had to rely on a wheelchair for a while (I think this was because more than one health hiccup decided to become a front-runner at the same time)…

But it is worth it, and I can’t explain to you why. I can’t explain to you what this has given me.

I re-shuffled my list of priorities and I put happiness first. I put living and life and desire first. I put heaven back at my feet. I brought back that feeling I had lost. I am craving a run and I wasn’t stupid enough to do that, but this… This is who I was. I will never be healthy. I will never be great. I will never achieve anything in the eyes of anyone else. I will be judged no matter what I do. I will fall ill(er) no matter what I do. I will end up back in a wheelchair or bed bound at some point whether I push myself or not. And I will kick it at some point or other whether I swim or don’t swim or whatever. So why not be happy? Why not achieve something in my own eyes, why not be judged while doing something I love, while living my dream? (I mean, going to university was my dream and that is so surreal, but hey it just gets better!). Why not fall ill after riding the high of doing sport again? Why not lay in a hospital bed at the lowest low with something to show for it, after riding a high in between. Why not live again? Why. Not. Live? Why not even try? People have told me that I won’t achieve so much – doctors, university people, other students… They have put me down and underestimated me and I have SMASHED the odds they bet in their minds against me. I just don’t believe it any more. And I am tired of longing. Time to achieve dreams that were always achievable, just maybe not sensible (I’m hoping I may be able to work up to running again, but I know that’s a long, long way off).

There’s some sense inside of me somewhere, and a fire that I currently can’t put out. A fire that burns every trace of the words “can’t” or “not well enough to-” out of my mind.

Does this even make any sense? I feel like it doesn’t say anything right but it’s the best my mind can come up with right now, I’m lost in a bubble of swimming and training plans and  PURE PURE EXCITEMENT. Who cares if this is the last time I will ever sleep in this house as part of a family of four (my 16 year old nephew moves in with my parents tomorrow, and without him even being here my mum has made me feel like he is far more welcome than me, so I was dreading it, but not that I have swimming back – my outlet for everything – it doesn’t feel so disheartening any more).

“I can see a difference, a difference over me
There’s something that has happened
No more cold defeat
There’s another dawning, a tremor where we stood
They said I would never, I said that I would,
That I would do something good
That I would do something better
Hey ey yeah
That I would do something, something, something, oh
I know it’s a higher love,
They say we don’t know enough
They say we don’t know enough
Well I know enough,
I know this is it for us
They say we don’t know enough
They say we don’t know enough
Well I know enough”

I know that another will change, another will change
I know that the blood’s still pumping through my veins
I know that the slower it fades, the slower it fades
I know when another will change, another will stay
I know that the blood’s still pumping through my veins
I know that the blood’s still pumping through my veins”

– Prides, Higher Love

No way but home.

(Right after how I figure out how to afford a membership to the leisure centre…)


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