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  • montanafillingham

Frustrationville; Population? Me.

Someone reached out to me last week, because the blog had been quiet and they wanted to make sure I was okay. I was incredibly touched by that. What's more the kindhearted individual has never met me, but she cares. Thing is she was right too. My posts lately have usually started a little downcast and ended on a high note; ended with hope - because I believe in that. Today all I can promise is I'll try my best. So the past few weeks I've often just felt like I have nothing more to give. I got so angry with myself in a physio session I had to stop and take a few calming breaths. I was learning to do transfers. For those of you that aren't in the care profession this means simply moving from one piece of furniture e.g. My chair to another piece of furniture e.g. A bed. Doesn't sound too hard right?

Add in 6 (almost 7) weeks led down doing nothing significant with your arms. Add in the fact I wasn't really a 'gym rat' anyway. Add in legs that don't work, and show no signs of anything I can even work on to improve; just fucking inanimate objects that I have to lug around with me. The embodiment of ‘dead weight’. Add in that my sitting balance has been affected and I essentially feel like a dysfunctional weeble, balancing precariously on my hip joints and scared if I wobble I will fall down. Add in back muscles that have been sliced and spread and pulled, to fix my broken skeleton. Muscles that now go tight and spasm at unpredictable intervals.

Yeah. I thought it would be easier too. Turns out all these things combined make lifting my ass off the seat using my hands really bloody hard. I mean don't get me wrong I'm doing it. There's been definite progress in just a week of physio. I've been lifting my butt and with a minor helping hand transferred in and out of my chair, but Friday I just wasn't getting there quick enough for me. The physio would say 'see you moved' and I'd want to scream in their faces 'yeah half-a-f**king-inch!!'. That's the point at which I had to stop.

I looked at my legs with sadness and a seething self hatred, even disgust. These just weren't my legs. Not the legs I remember. The physio tried to tell me not to be so hard on myself. I looked at them and knew they didn't get it, and how could they. I looked at one of them straight and said what he had to understand is that it's unbelievably frustrating, that he couldn't possibly realise the loss, that I hope he never has to. I went from speeding round an emergency department, living an adventurous life with such ease, taking my precious legs and mobility for granted (as most do), to suddenly only being able to shift my ass half an inch. He didn't know what to say, other than he wanted me to have a balance between motivation and beating myself up. He's right of course, but with everything I'm feeling right now that balance is less a set of scales and more a tight rope walk... with fire beneath me... and the odd crocodile. Still, I took my few minutes and tried to shake it off. In here bad days are a given, it's being able to get out from underneath them that’s the skill. I couldn't let one bad physio session deter me.

Then came Saturday. I was so excited as my fiancé and I had planned a trip out into 'the real world’. We were going to see Gaurdian of the Galaxy Vol.2 (if you haven't seen it and are into anything from fantasy, to comedy, to romance - or simply like cute but spunky animated trees - do yourself a favour and go! Laugh:Cry:Awh ratio is on point). I didn't even think what an obstacle this potentially was, and why would I when before popping down to town was so normal? Plus the pavements down there are flatter from what a I recall, plus everywhere has to be wheelchair friendly to some degree, it's a City! Right? Little did I appreciate that I've entered a different world. It's starting to sink in how different life is going to be, but it showed me there is an ocean to sink through yet. Deep breath Georgie.

Wheelchair space on the bus: Critique number 1: poor design. Fricken' pole in the way of reverse parking how I needed to, and jokes about women driver’s aside, even my fiancé struggled when he came to my rescue. Critique number 2: the wheelchair user feels what I can only imagine an animal in a zoo feels. You are not only in a chair - for the general public already an anomaly - but you are now facing the 'wrong' way in your glorious attention-drawing chariot; in a spotlight for people to focus questioning looks, or worse the well-meaning pity smile. You then have to manoeuvre off the bus; at which point you've usually forced some over eager public service user to awkwardly back up, as you've had to wait for a complete stop to manoeuvre yourself out of the awkward ass space. Needless to say, I was already tipping a little out of my comfort zone. The stares, pffft no problem. I get that people are curious or maybe I catch their eye by accident (God knows I've done that plenty of times before my chair appeared in the narrative), but there’s this awkward, embarrassed desperation to appear like you are a functioning adult and not just an invalid, as you struggle to do an inane daily task - get off a friggin' bus. That's the real kicker. It's kind of like that nightmare where you turn up at school naked.

Despite this, I'm still clutching my bold as brass attitude. The bus ride was over and that was gonna be the worst part, right? Wrong! Because it's Saturday and 3.30pm and in my infinite and optimistic wisdom I had decided - again without realising I’d be putting myself slap bam in the middle of 'the frey' as they say - that I should take the opportunity of being down town to kill some birds with my solitary stone; the more the merrier. I needed to get some ribbon for wedding invites, ooh and I could go to Waterstones too - I even had my book vouchers on me. These tasks would have given me so much joy before; a bit of wedding orientated retail therapy, a ponder around tables and shelves of new potential favourite books... Lovely! Well, the ribbon stall was in Cardiff market. It was okay moving through as long as we didn't stop. When we did it was like I couldn't possibly be more in the way, and couldn't move myself out of the way fast enough - plus I was worried about hitting into someone. I felt like nothing but an inconvenience. I took to looking down at my hands and 'wringing my fingers'. I never understood that expression until I sat there playing self consciously with my digits, like I was trying to squeeze the stuff I'm made of out of the nail beds. I just wanted out but I was frozen like a baby rabbit caught in the headlights. Thankfully, my fiancé noticed and he immediately hurried things along so we could get out. I breathed a sigh of relief. I didn't think about it at the time, but since I have it on good authority that Cardiff market - especially at peak times - is a nightmare to even the fully able and upright.

That's okay though, because the next check on my list was my happy place. Time to spend vouchers from kind visitors on glorious books. People that really know me, know that I will happily spend hours in book shops. I might not even make a purchase, but I'm more than content to wander among the dust jackets and unread pages; seeking another book to add to my intimate library. Some people buy a book as they finish one. Me? I have a little haven of my own where I get to recreate that browsing feeling, and decide which of the unread or unfinished texts call to me today. Often I find just what I need.

After the assault to the senses that was Cardiff Market, I was looking forward to the calm of a bookshop. Problem was, that simple pleasure had been changed by Mr. Chair too. I was self conscious and clumsy. Afraid that I would hit the displays with my chair, that I'd be in someone’s way; without the ability to step back and read the back of my potential purchase in a considerate manner, in uninhabited space. It was like being the fat, self conscious kid in class, (and I was, and remember it well), constantly feeling you take up too much space, willing yourself to be smaller, hunching you shoulders thinking that makes you more compact or less visible. Along with this self conscious undertone, came the fear of having to ask for assistance in a way I hadn't before. 'Can you tell me where to find this book?' becomes can you come with me and retrieve the book because I might not be able to reach; basically can you get it for me? There's nothing wrong with asking for help, but I'm not used to being so reliant. And God! The pity leaking from the eyes of kind strangers, who when I apologised for not being able to move quickly, or being obviously in their easiest path, would assure me it was okay... Is it? For the first time book shopping hadn't made me feel better.

I felt out of place in a city I had lived, worked and played in. I remember the me before the accident. That confident sass-monster parading around, getting multiple chores done. Not realising how marvellous it is to stride around power shopping in platformed boots and denim. That woman with her lipstick and leather jackets; never sparing a second to consider that one day she’d lose that confident air she had fought so very hard to build, just because her legs are deaf to her brains instructions. To be in a position where she'd have to learn to love herself anew; forced back to on-off self esteem. Well, I guess it only took 26 years the last time and I've got a head start. Losing my legs only changes my outward self; I remain the same girl/woman on the inside. I'm just having to peel off layers of anxiety to see that. I'm thankful that I have never placed all of my self worth on looks. Still, I'm only human and yeah being in a chair has - I think fairly obviously - altered my body image.

Not that it's the first priority and I know it sounds shallow, but I don't feel sexy or beautiful right now - with the Michael Jackson ted stockings against my black leggings and converse. Plus being constantly in yoga pants and loose tops, not to mention the shaving difficulties! My legs do not comply, they aren't posable and they are heavy to hold in the right position AND shave. The other day I gave up. My lower legs half smooth, half 'European' - it was a good look, maybe it'll catch on. If it was a chore before it’s a f**king crusade now. And the lady area? Well just forget that, ain't nobody got time, plus I haven't been brave enough to confront questions about my future sex life. Anyway it's silly societal beauty standards yes, and maybe complying makes me a ‘bad feminist’, but these little things combined make me feel cleaner and better about myself. I just feel 'not-me' now. Like an essential piece of my identity was connected to being upright; like it existed in my limbs. I feel as if I'm desperately trying to claw it upwards - like a pair of those ridiculous Spanx knickers - and store that piece of me someone else now. Essentially I feel like I'm rebuilding myself… and I guess I am. I'm trying to pull the broken bits back together, salvage what I can, and go on in a different kind of body. It's not really a new body of course, but it's new to me, it's all new to me.

I had taken so much for granted. Not just walking but everything my legs did. Kneeling. Sitting with my knees drawn up to my chest. Sitting cross legged on the floor. Turning over in bed to lie on my stomach. The feel of comfy, warn trainers - hell, being able to wear trainers down with daily use. A marker of busy feet; of a busy life. I went for a walk with the fiancé, (I mean he took me for a walk), we went to the park after a summer rain and it was beautiful. I came back to my bed content, but as they hoisted me back to bed, my shoes were about to hit the clean crisp sheet and I shouted to the nurses so I wouldn’t get the bed dirty. I had to laugh at my stupid mistake, but inside it made me sad to see those soles as white and pristine as when I took them out of the box - no mud, no rain water, no grass. There’s all these small things that are tiny specs of my personality. The girl who always sat cross legged on the floor, led prone on the sofa or bed or exploring the world around me. I wasn't finished. There were so many things left to do. Some of which are gonna be stupidly hard now (but not impossible! I'll never admit to that). Some of them aren't grand. I want to teach my children to ride a bike, take them to soft play and join in, trampoline, water parks, explore nature by minnow fishing or finding tadpoles like my mumma did with me. I want to try that new exercise fad with my work mates and go out on work nights out, without the worry of access for Mr. Chair. I want to travel; see Machu Picchu, chase the northern lights, ride a camel and camp in the Moroccan desert. I want to dance with my husband on our wedding day, hell I want to dance with my friends at every wedding and shindig that’s coming our way.

I woke up Sunday in one of the biggest slumps I've had in a while. I was angry, but couldn't be bothered to shout. I was upset, but I couldn't be bothered to cry. I was picking fights with my loved ones just to be angry at something. I didn't want to get out of bed. I wanted the nurses to piss off with their soap and grey bowls of either scalding or tepid water. I wanted to have some f**king control. It was the climax of a very long and very frustrating week. I hadn't even been able to talk to my Dad since he'd come out of hospital. I didn't have the reserves for one, and for two I knew if I heard his voice I couldn't hide from him. I've never wanted to hide how I feel from my Dad, I've never had to; but I felt like the complications he'd recently suffered, were a product of trying to get better too fast, all to be by my side - and I didn't want to add insult to injury. He hadn't been able to visit still. My phone rang that evening. Dad. I answered and I just let go. I cried in tremulous sobs; all shuddering intakes of breath shaking tears from my lashes. 'I just want to wake up Daddy. I want my life back. I know I'm still here, but even if I can still do some of the things I did, the life I had is gone and it isn't fair’. I broke my heart down that phone and Dad's voice broke with it. He told me not to apologise - I'm his little girl, he wants me to tell him how I'm feeling and he'll never mind hurting with me. My parents are incredible. I wouldn't be who I am without them and my brother. I owe it all to them.

It was a tough week and I'm still battling on to accept all this ‘new’. I know that I will make a new life and good life, but it feels shit sometimes. Hell! A lot of times, as you contemplate and come to terms with what you've lost. I don't think I even started really processing it until the day I got my chair, and that was only 3 weeks ago today. I'm not gonna adapt overnight, it's too much to take in. I am starting to feel better even with recent set backs. I now have a small pressure sore and being back on bed rest - while necessary - is maddening. It’s another learning curve - and there will be more. I don't know how ready I am to do this, but I know that I'm giving it my all. I also know that I have the best support. My Dad surprised me with a visit yesterday; 7 weeks after we’d had to say ‘see you soon’ and it was the best gift and inspiration to see him so well. Him and my Mum are both strong determined people and that's how they raised me. With them, my family and friends and this whole tribe I can get through this. It's gonna be a f**k load of 'different' (but I've always been a little different) and it might not always be okay, but it will be one day.

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