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Getting On With It

This is gonna be a longun'. So hold on to your britches.... I thought after coming out of a slump, it would be good to just stop a second and look back through the blogs. I wanted to appreciate how far I've come; there are especially because when I started writing this I'd hit a bit of a road block. I felt stuck. Like I'd cracked the bed transfer, are are there and now I just couldn't progress any further. I needed to get back into my groove, get my motivational wheel turning again and crack on! I thought reminding myself where I was 3 months ago, or even a month ago, might help.

The first thing that struck me was how quickly after my accident I was writing. I never thought that it was remarkable at the time, but I guess now I realise that it's something that I should be proud of. I had only just had a major accident, yet instead of going inside myself I spoke out and remained resilient. In part that's just who I am, and I thank my mother, and hers for that attitude.

At the time I remember needing something. Fiercely needing something, to distract me from how hurt I was. I wrote brave words about continuing on despite anything, and I think sometimes I wasn't so much brave as convincing myself that I could be that I could make it through this. I had to believe in myself, something I have always privately struggled with; so I had to force it. If I could convince others that I could get through the darkest hours of my life, maybe, just maybe I could convince myself. In a way I wish I could have believed more strongly that my legs would come back to me; that perhaps I could have willed it so - but I my brain is grounded in science, fact, probability; part of me always knew that they'd never be the same. I'll paraphrase myself; you can put out the fire, but what is burnt is burnt.

Still, I don't accept it. I still hope; and that hope has recently been provided kindling… BUT my hope that my legs improve, is now rooted more in easier transfers, and accomplishing daily tasks from my chair, than about walking again. In a way, I feel I'm letting people down by not focusing on walking again. Some people believe if I just refuse to accept it, if I just believed I'll walk again, then someday it will happen; have faith etc. I'm sorry I can't do that. Because it doesn't work that way. Maybe my 'medical' mind is getting in the way but belief, at least alone, won't heal my spinal cord. I'm doing as much as I can with the reality of modern medicine, and as much effort as I can muster, and while I will always hope for improvement (and I have improved so much from where I was) that's enough for me - at least for right now. It's me that has to live with the effort I'm making and the reality of the situation - and I can. This acceptance is not giving up; I just simply refuse to believe that I have to walk again in order to have a fulfilling life. For now, I’m proud of what I'm achieving and you have not seen the half of it.

There has recently been 'a development'. After not moving at all for 18 weeks, I have some small contractions in my thighs. My feelings about this are mixed. Of course I'm excited. It's proof of my ability to heal. If we return to the imagery of fire, ashes can't be resurrected, but even deep burns can heal with time and the understanding results might not be ‘pretty’. It's proof my body is fighting as hard as my mind is. Being able to send a signal from my brain and actually have my stupid legs listen is incredible. It feels like hope. It is hope. My hopeful mind gallops into overdrive of what this could become. I'm at a full canter thinking about hip flexion, standing with crutches, parallel bar work... But my rational mind has been trying to get to grips with the reality of wheelchair use, and I know with my physicians hat on that small contractions in my thigh muscles are a far cry from walking. The reality is, that with all the hard work I'm about to put in we still just don't know if I'll recover anything 'functional'. So I remain hopeful, but I'm forbidding my mind from getting too far ahead of myself. I don't want you all to think this is the start of a full recovery; I don't want to let you down. Most of all I don't want to feel that crushing disappointment myself if in a few weeks we find I plateau. Still, I'm hopeful guys, and more than that I am gonna work the hardest I ever have.

I said something similar to all this in one of my first blogs. That I would get as far as modern medicine and pure grit would take me; that I'd do as I was told. I'm not 'as far' yet, and look what I've already done. However, I'll admit reading that particular blog I got angry. I did everything I was told! I led still for 6 weeks! Yet my legs didn't improve until just when I'd resigned myself to the likelihood that they might not. I called the thoughts that I would never walk again ‘demons’, but realised they were probably just messengers. My mind wasn't ready to accept my new reality, so they broke it to me slowly; with whispered 'what ifs' and the endless questions - most of which I still don't know the answers to. How will you ever do that or this; how could you possibly look after a child, or travel the world, or be an A and E consultant one day?

3 months on, and even before things took a positive turn I've been searching for ways. That's what I want you to know. I'm not giving up. Things are different yes, but that grit is still in play and I'm determined to do everything and anything I want to. Did you know there's wheelchair tours of Venice and China? Even accessible safaris?!? There are also many disabled and capable Mums out there. You adapt and life is different - but those of you who know me, tell me… when was I ever normal?When did I ever take the easy, conventional route? What I'm trying to say is I think I'm turning a corner mentally and realising that the only thing that will stop me living a full life is me. I was crushed when I thought that my plans were ruined. That this would change everything. All this changes is how I live that life; but I’m determined to never let it change what I do with my life.

Reading back I have given myself a new courage. I came face to face with my own resilience and became re-determined. You forget how much you've been through some days. I mean the first four of five days from the accident are a hellish blur. Just pain and tear soaked faces. The snake of a morphine drip coiled around my arm, keeping me in a nauseous, heady trance. They say you can never truly remember pain, your mind protects you from reliving it, but my 'neighbour' in here had a front row seat to my suffering. She was also my 'neighbour' in the spinal ward I first arrived in, fresh from the operating room. She reminds me how far I’ve come. How she remembers me crying out in agony whenever they turned me for pressure relief. How she remembers how scared I was; how I cried with my loved ones; or maybe worse when I put on a brave face on for others.

It was a stark wake up call to hear her recall my darkest moments and realise they weren't so long ago. It was hard to think of myself like that. I'm good with pain and yet I do remember crying out, dreading them coming to move me... Feeling like one big lump of agony. I remember the dry mouth, the heavy eyelids, uneasy sleep and worse, the pangs of emotion, of what the f**k has just happened to me? As uncomfortable as it is to remember how sad I was, it's important for me to realise that was less than 4 months ago. It was only 3 weeks ago I wasn’t able to get out of bed without a hoist; and yet now I hop in and out maybe more than 4 times a day; I can even do it without anyone helping. I mean that's huge! And yet it's easy to forget, because a part of you remembers how little these things were before. Insignificant activities that you wouldn't even think about doing, you'd just do. The only thought I spared for getting out of bed was that, actually, I'd rather not, as I pressed the snooze button - probably not for the first time either.

I needed to look back and see the change, the progress - and to give myself a pat on the back. I read how frustrated I was at trying to transfer, and now it's a daily part of life. It reminds me that the struggle I have today is only a struggle today, by next month it probably won't be and they'll be something else that's pissing me off because I can't do it straightaway - not that I'm impatient.

A wonderful person reached out to me about a month back when I was having a bad time. She told me her story of life changing illness. How the newness of everything she now had to consider had completely rocked her world. She remembered a specialist telling her how eventually things would become a 'new normal’, and told me how she never believed that at the time, but that it really has worked out that way. Just like her I've sat thinking, ‘how will this ever be normal again? How on earth do I get my simple, care free life back? The blunt answer is, I won't. But just because life will never be entirely ‘normal’ again does not mean it won't be a full and vibrant life. Things are gonna take more planning, a little ingenuity and a bloody strong will - but I hope I have that will, and so it follows there will always be a way. I might always have days were I think 'I wish I could walk, just stand even..' But then again perhaps I won't think like that… eventually.

It's already weird standing, (some of you will have seen pictures, they stand me using a mechanical frame once a week; to promote bone strength and good digestion), I looked down at the floor that first time and all I could think was, ‘f**k I was tall?!' The floor seemed so far away, and that was after only months sat down, let alone the rest of my life. So yeah maybe one day walking won't even seem like that much of a loss? Cause I'll be so capable from my chair… (again, I think this is me convincing myself it won’t be so bad). Who knows what I'll be capable of in a year or two. Even while writing and editing this blog there's been progress; I managed to pull myself into a standing frame without the motor assist this week. Plus I've come so far from the initial difficulty of manoeuvring in my chair. I still should probably have ‘L’ plates but I'm much more confident. I have to sit up and recognise that progress has been over just 2 months. That's right boys and girls I've only been out of bed for 2 months!! Plus I had 10 days back in bed due to pressure sores.

You know that feeling where time seems to have flown by, and yet simultaneously it’s like you're not moving quick enough. Kind of like being on a Merry-go-round, you look out and life is rushing by, you look in front and there's a methodical happy pace; but you never quite catch up to what you're chasing. Yeah that's exactly how things feel for me at the moment. I've now managed to see Dad several times by now and he is doing so well, yet it doesn't seem like yesterday I was breaking my heart wanting to be in that ITU.

Then there's being out in public, which initially was an anxiety fuelled nightmare, with me feeling like an abnormality; that I'm in the way; holding things up; an inconvenience. You have to grow a thicker skin, and now, while in not completely comfortable, I'm more confident asking for help and ignoring those ignorant f**kers who don't appreciate you can't make evasive manoeuvres, (you will get run over). I can ignore the annoyed scoffs from people in a hurry, when I need the ramp lowered from the bus. It's tough shit! I have as much right to use the service and I've got places to be too! Essentially I have as much right to life, in every way, as they do.

I met another disabled girl and she was telling me the comments she got at Glastonbury. Things like 'why the hell would you come here if you're in a wheelchair' or my favourites 'you're too pretty/young to be disabled’, as if that's anything to do with it. Well, I have news for those sorts of people. I will be at festivals, car shows, county shows and rock gigs and you won't f**king stop me. I have a life to live, now get out my way...

I'm also trying to give myself a bit more of a break sometimes. I seem to be my worst critic in here - it's not often a physio will tell you to slow down - but I've always just been good at things; school work, singing, caring for people; all of it just came fairly naturally. I mean don't get me wrong I had to practice, work hard and study too, but it wasn't ever a chore. I never found it really difficult. Being honest with myself things I did find really hard (like running, piano, saxophone, skateboarding) well I just kind of let them slide. I was good at the things I was good at, which was plenty enough to keep me busy. Now I've been forced to do something, well multiple things, that I'm not comfortable with and I am definitely not naturally good at. Upper body strength? What's that?! Core strength? Abs? I know anatomically I have abdominal muscles somewhere, but would never have said I had 'abs'. Still this time I have no choice but to persevere. I need to build my upper strength, to do the difficult transfers in order to manage my disability. There is no 'oh this is hard maybe I'll just do something else...' Still, I realise now that I can't get cross at myself for that. I just have to give myself the time to practice and eventually things will become natural. So I'm starting double sessions 3 times a week, and in a month or two feel free to call me SheHulk! In fact that's Halloween sorted! Either that or a gender bent Professor X.

The only thing I have felt natural at, sport wise at least, is swimming, and I finally managed to bag some hydro pool time. It was very strange, but wonderful at the same time. To get in I go on this crane like contraption that lowers a seat (with me on it) into the pool gradually. Only thing is I have no sensation in my lower legs, so if I don't actually watch my legs submerge, its as if I have no legs. Then again when I'm fully in the water, because I have some sparred joint positional sense, I know where my feet and legs are, I’m just unable to feel the water against my skin. The result is an increased weightlessness. One of the physio is convinced I'm a mermaid for how at home I am in, and I must admit being in the pool is the most normal I've felt since the accident. Being able to move without a wheelchair is an exquisite gift - but trust me I only look that graceful treading water... When I say I feel natural 'swimming’, I should say floating (or propelling?) instead. Due to the metal work in my back the standard breast stroke I'm comfortable with, is a spinal hyperextension hell that I can't tolerate. I was never good at back crawl, so I just skull around. Like a pond skater. Still that hour of therapy time has been the most peaceful of my life in the past 4 months.

I can also now get in the Car! Albeit with a bit of fiddling and figuring in curb heights - and sometimes I need a push to get ‘thy badonkadonk’ in - but again a massive leap forward. Suddenly, I'm not so confined. There are of course the new challenges of directing my mates and family to fold up my chair, hoping we can magically fit it in whatever car I'm getting into - slapstick at its best on a few occasions - but I can wave goodbye to ‘Costa del Rookwood’ for a trip out. It was this new party trick that allowed me to take a trip out West to see my old A and E team. I wheeled in to screams and cuddles, and it was great to see I had been missed; because I for one had really missed them. It had been the first team I had felt really at home in; one of the saddest parts of my crash had been my rapid departure. A car crash won't keep me from gravitating back there I think - if they'll have me. Everybody thought I'd find going back there hard, but it was the easiest thing in the world - I just wish I could have got stuck in and seen patients! I hope those from the department reading this realise that they are a big part of my motivation to get back to work. The whole team made me feel so welcome and supported. They built me up in a few short months, and leaving quickly just meant I couldn't let them know how much I appreciated everyone I worked with.

While out in the area I also had the honour of meeting a man I will never forget. There were others who stopped to help, and god knows I thank them so much; but Pete's care in that car is the first thing I remember when I woke up. His voice keeping me conscious. Him giving me his jacket as I went into shock. I was really nervous to meet him again, (and I think he was a little too), but it was lovely. We talked normally, like we were old friends and even shared a glass of wine. My parents got to thank him for being there for me, when he didn't even know me, which I know meant a lot to them - Dad had said a long time ago he just wanted to shake 'that man's' hand. In meeting him I began to appreciate the bravery of first responders. They don't know what they'll find. He didn't know what he'd see approaching my car that day, but he still did; and the best thing is he's so humble he doesn't even think it was a big deal. I was also welcomed with open arms by the whole family - he has a lovely wife and two gorgeous and lively girls. They’ve all been following my blog. I have lost so much that is irreplaceable, but I have gained a lot too. Connections that will never be forgotten.

Recently, I feel I'm not just coming on physically, but that I'm coming back into my own stride so to speak. I've been going out, I've got my lippy back on and a few new sets of clothes, (tailored to my need to be flexible, cool and be able to chuck in a cheeky pee tube, even if I'm out - or in Mum's car doing 70 down the m4). It's silly that something so superficial can pick up your mood, but after an accident so physically altering, feeling better about your image is another battle you're bound to fight. I've battled from childhood with 'body positivity'. It took me 26 years to feel confident in my own skin, and crush my insecurities of thunder thighs and a chubby mid-drift. Being a bigger girl I always made such effort with my outfits and make-up to 'make up' for where I didn't fit the 'ideal'. In the last few years I f**king loved my body as a whole. I would rock skinny jeans into the bar and love my full booty and curve of my hips. Now those feminine, empowering features were constantly stuck in a chair, and I just didn't feel attractive. Dressing better and wearing make-up again has felt like a definitive change in that; even if that's silly. It feels like taking charge. I got my hair cut and styled, and it was like being re-born, feeling cleansed. I guess what it comes down to is self-care, and essentially what I'm saying is don't underestimate a good pamper session. I'm on route to reclaiming my body image, and while the injury has come with brand new insecurities, (my swollen ankles and feet currently repulse me), I am starting to feel the fight in me rise toward the ultimate goal of acceptance.

I've also been to my first few social gatherings; a 30th birthday and a 40th wedding anniversary; both of which came with their own new and daunting challenges. The main one for both, was the feeling of not wanting to take attention away from the people we were celebrating. Not wanting to taint the atmosphere with stares of pity, and whispers of 'what a shame'. It was actually quite refreshing when, at the birthday, a guy came up and went straight for the jugular; 'I don't know you, well I know your fiancé and I know what happened, and I'm sorry love; but it's good to see you, how you getting on?' Still, people may not realise how difficult it is to answer that honestly, without bringing the recreational atmosphere screeching to an awkward halt.

Now, there are many people I know who genuinely care but - forgive the cynic in me - there are some who ask those questions because they feel they should, to be polite, or those that think once they ask they can move quickly on to ignoring the wheelchair-shaped elephant in the room. Either type of person is not always prepared to hear the reality, that while you are doing well, things are hard. They want to hear you are 'beating it', for you to put the brave face on, so they don’t have to feel sad. Sometimes, (you'll never say it because you know people mean well), you feel like saying 'how do you think I'm doing? How would you be doing? How do you imagine my day to day life goes?', but then you risk seeming self-pitying and bitter. I'm lucky in my outlook, that I can usually fight that bitter edge and find a happy medium; being honest enough to address the reality, but upbeat and humorous enough to keep them feeling like they are being kind and polite. Then again I worry the humour I rely so heavily on is a kind of gallows humour, and that it can occasionally go awry and you have to rescue the party atmosphere so you don't feel you've sallowed the mood - or grossed someone out by joking about pissing yourself. It's a delicate balancing act. I'm still drawn to trying to look after and comfort everyone else; it's an odd dynamic but it also spares me the 'tilted head, scrunchy eyed' look of barely veiled sympathy. I appreciate people feel sorry for what's happened to me, but sometimes everybody else's sadness can overwhelm you. These interactions are inevitable, but part of what makes social situations so nerve wracking.

There's also the practicality of talking in a group at the bar, with everyone else standing - you can't hear a thing and everyone towers over you. It's an unintentional exclusion but I remember remarking 'now I know how midgets feel’. Suddenly we found a table, and I felt bad, as if my disability had dictated things for my friends and hoping my comment wasn't taken as a hint. I did enjoy myself though and the birthday girl enjoyed seeing me - that's the main thing. I still got in the car and remember turning to my fiancé and saying, 'that was terrifying'. However, I'm a firm believer in ‘if you've done it once you can do it again’… And so the second social engagement was easier. Maybe that was partly because it was family. I talked easier, joked without worrying too much, and just enjoyed the company of people who love me. Those worries still come in to play believe you me, (my Uncle got a bit emotional, and it's hard to see someone you love so much, hurt for you), but they were blunted. Plus 2 things were the best balm. 1) The reaction of my Auntie and Uncle - we'd kept my attendance a surprise. 2) Cuddles with my little mate George, and all the other family kids. Children see things differently; they approach things with a refreshing candour.

Of course having gone home for the family affair, I've been to my childhood home for the first time. It’s been the most difficult thing this month; mentally at least. To feel alien in a place you grew up. For it to be a struggle to navigate a space you grew into. To feel trapped in a single room, because it's a struggle to get through doors, without taking off some wallpaper or scuffing the paint. No way to see your own bedroom, a place you saught solace and comfort. It would have been the most natural thing in the world to go upstairs. As me and Dad were arriving back from seeing a certain furry companion, (that was a highlight, I've missed the little bugger. Yes Vincent is doing well with the foster family), I thought 'right when I get in I need to go upstairs and wake my fiancé, so he can have a showe... Oh... I can't do that'. It's moments like that which just occasionally catch you off guard. Like getting out the lift in the shopping mall at floor 1 with everyone else, cause there's loads of escalators down to floor 0; it's easy enough to get down when you need... Oh shit. That got my mate giggling, but it's a brutal moment of realisation. A sudden fist closing round your heart. You get through though, and you have to laugh. My cousin says he worries less about the insignificant, because of what's happened to me, and I love that. If I could give advice to anyone, it's that life is too fragile to worry. It's a misuse of imagination for one, and in tramples on your joy. Your joy is so important. I still have joy in my life. I still find happiness everyday, and it's that which keeps me going, because I still have a lot more joy to find. I'm getting on with it all.

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