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Down the Rabbit Hole

I have something of an apology for you tribe. I've been absent and I know that. I've tried to keep you posted with pictures and videos, but I've kept promising a new blog entry and then not putting pen to paper (or more accurately fingers to iPad). There's a number of reasons for this and if you'll bear with me I'll do my best to explain.

Firstly I'd started to be cautious that my posts were starting to darken. Now, I have no qualms about sharing my dark moments at all. That was the point. I wanted to be honest about what this is like; but the last thing I wanted was to cast myself in the 'Moaning Mertyl' role and just complain about how terrible this all is. It is terrible; it's devastating and don't worry I fully accept that, but I started this wanting to 'beat this' and I didn't want to lose that positive spirit and attitude.

Now I know many of you following, (you beautiful humans) genuinely want to hear my gripes and frustrations because you care and want to know how I'm doing; you want to help me go through this and I love you all for that. I'm sure you can see from what I have posted that physically I've made big progress, but I felt I was on the verge of bitterness and I decided I needed to stop for a little bit and take some time to deal with the anger and distress. I didn't intend to stay away quite so long. I'm sorry I've caused some concern about how I'm dealing with it all. My honest answer is sometimes I'm not okay, but that is happening less each day and mostly... well I'm getting there. Secondly, I wanted to write something positive, but not being in the right head space I didn't want to force anything and so I have arrived naturally at this update.

I have come on leaps and bounds. Even in the last 2 weeks I've gained strength and got more confident getting into my chair. They are talking about discharge in a few months, something I'm feeling excited and apprehensive about simultaneously - but the jist is I'm doing it. I'm improving. It was Father's Day yesterday and I managed to dress myself without any help, I even wore jeans, (if you don't think that's a feat try dressing yourself led down with ankle weights on - or just trust me - it's a f**king work out in itself!) and I was so proud of myself; so was my Dad. He's proud because I've not giving up when it would have been so easy to.

The time I've spent away from the blog I have had moments of going inside myself. I remember sitting in the bike shelter having a fag in the pissing rain and just thinking 'why?'. The therapist here says this is called 'feeling it'. She says I'm good at getting on and getting things done, meanwhile telling my feelings to 'hang on a minute I've got stuff to do' - but I knew (as she did) that eventually I would just need to feel it. So I asked why? Why me? Why now? Why didn't those people I avoided stop? Why can't I write at the moment? Why am I snapping at Carl and my Mum and Dad when I love them more than the earth? Most of the time I couldn't find any answers, but I'd just sit there - still asking. Asking would lead to anger more often than not. I'd always tried to be a good person. I know no one is ever 100% at that, I accept I've hurt people before - everyone's hurt someone - but never have I done such intentionally or without apology. I think I was, I think I am a good person and I was angry because I didn't feel I deserved this. It feels so cruel.

I’d had a hard time in medical school. Family deaths, depression, operations, family ill health, the rape; so much happened that could have stopped me but I got through it. I got that degree and I was working my dream job and getting on with life. I felt that after all that life was finally good with a wedding and financial security to look forward to and.... crash.... 'I can't feel my legs!'

But then who does deserve this I guess? I was only saying to Dad the other day that I've not met a bad person in rehab. All of us are sad stories of freak accidents or accepted risks for operations or even personal pleasures. I'll admit sometimes I'd feel a momentary flinch of upset, even anger at people who are injured because they did something for ‘fun’ that landed them here; I didn't put myself in harms way or tempt fate, and yet here I am too. However, those feelings just didn't sit right and I worked out in the end that I wasn't angry at them for being 'reckless’, because I believe in not wrapping yourself in cotton wool, living life to the full, taking risks. I'm glad of living my life like that and I don't want that desire to change. No I wasn’t angry at them, I was just angry at everything.

Anger was a big part of my time out.

I was angry at my legs for not working. Everything was just so difficult. The day I did my first transfer alone I was happy… and then I realised how many more hurdles were to come and feel angry at how such simple things felt like something to be celebrated.

I was angry at the people I avoided for not stopping or coming forward as witnesses. I mean I just couldn't get over that and it honestly took the most time to fade. How could anyone be that close to a crash on a B road and not stop? But I realise that I have to let that go because knowing couldn't possibly help me get on.

I was angry at myself. For lashing out at the people I love best. I know we all do it. It's safe to take it out on the people we know would never leave us. Even as I would do it I would have a voice inside saying, 'stop it! It isn't their fault'.

Then I was getting irritated at people’s complaints. Even other patients who are going through their own stuff but they at least can move their legs and learn to walk again. I do appreciate that what has happened to them is still crappy and to them it is upsetting and hard too. It's not their fault I'm angry, but it still griped me. Seeing other people walking around the ward, (even with walking aids) felt like more punishment. Seeing something I'm now told is beyond my reach.

That's another reason I had to step away. I haven't been able to write about it because then it feels more real. They've told me that 'we are not looking at a functional recovery’; essentially my spinal cord below my hips is dead - I will not walk again. Now I knew this when my legs showed no improvement at 2 months. My 10% chance of walking was decreasing with every minute of 'no improvement'. I'm now at the second spinal cord injury milestone, 3 months, (it goes 6weeks, 3months, 6months, 2years) and still there has been no further improvement in motor function. Now the optimistic among you will say that I still have time for things to come back. It's true. Neuro-injuries are the slowest to heal. I hold out hope of improvement, but that improvement is now more a case of stronger hip movement to help me move my legs with less effort - it wouldn't be enough for me to walk again.

Getting my head round this all being permanent has been the struggle recently. Sometimes I still feel like I'm in a bad dream, others I accept this is real but I can't accept that it is forever. I find myself trying to cling on to the function miraculously coming back one day… but deep in my heart I know that is unlikely, and that reality feels like a sucking black hole of uncertainty and challenges. It makes me fearful of the future. It makes me wonder if I can do this. I don't think anyone could be okay with being paralysed, but it is what it is. I can't ignore the wheelchair or my dead legs. I can't say 'hang on a minute' to this. I am permanently paralysed from the waist down and that is what it is. This isn't giving up, but in order to move forward I have to accept what I have got and move forward with a new goal; to become an independent wheelchair user. The chair can either rule my life or it can be a tool for me to live my life, and that is what I want. To live a life that is still an adventure, still fulfilling.

I've been considering words lately to go into a tattoo I want over the spinal surgery scar. My brother suggested survive… but I will tell you the same thing I told him; I don't want to simply survive, I want to live.

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