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  • montanafillingham

It's all shits and giggles, till someone giggles and shits

Blogs are coming slower these days. I seem to apologise at the entry to each instalment for the sporadic nature of my entries, but just never think I have forgotten my tribe. I know you are all out there routing for me, and I truly doubt that the majority of you realise how much courage such a thought gives me.

Once again many things have happened since my last update. Time just seems to fly by in here. I mean the crash is 5 months ago, yet to me it seems like a lifetime ago, but still so incredibly raw. I’ve been through another rough patch recently, to the point that, 5 months on, I have had some of the lowest days of all.

Days that start with fighting and end with just surviving – and on the worst days once again wishing I hadn’t. Days I have woken up from dreams where I was able bodied again, still with the ghost of what it feels like to walk, weighing heavy on my feckless limbs, and a burning desire that maybe I’ve woken up in a body that will work how I ask it too. Realisation would then set in and I can’t impress upon you just how much energy it then takes to muscle myself into simple tasks; to start another day. Its hard to keep in focus how far you’ve come when the memory of what you could do, seems to catch your breath when you’re at your lowest. I still keep fighting when some mornings seem hopeless; the days you ask 'what am I getting up for?’ You know the answers really; for hope, improvement, resilience, your family, your tribe, but on such days they seem elusive and insubstantial. Yeah it’s been a rough few weeks on the spinal cord injury rollercoaster, but I do still keep fighting; and this blog, in it’s roundabout, rambling way, is about what keeps that inner fire burning; even if somedays it’s dimmed to hot embers.

Before I launch into another epic, I thought it was high time to let you know the days typically go in here. I’m in a specialised rehab facility that deals with all levels and types of spinal cord injury. This means the stories and people in here are varied to say the least. No two SCIs (Spinal Cord Injuries) are the same. It’s like we are all in the same fleet but in our own separate boats. We ride the seas together, but some of us have a rougher ride – still we all weather the same storm in one way or another. We each have physio everyday and occupational therapy sessions every week. The physio varies for each of us according to our needs. One person might be over the gym, taking foal like steps with crutches, while another is just concentrating on sitting straight, to improve core balance. Again we all have different goals and potentials. It can be hard to get your head round how someone can be a tetraplegic, (both arms and legs affected) and yet they may have a good chance at walking again, whilst someone like me is paraplegic, (only my legs are affected), but my spinal cord damage is in some ways worse, as I’m not expected to regain proper leg function. There are just so many variables.

Then there are OT (occupational therapy) sessions, which focus more on day to day life e.g. Hobbies, work tasks ,as well as ‘real life’ function e.g. how to dress yourself led down, how to shower on a shower chair - without ending up next to the bar of soap you managed to drop on the floor. Having moved on from things like washing and dressing, I use mine to cook and bake, as a bit of light relaxation therapy. Others need more intense intervention for posture issues, contractions and hand dexterity. In between these sessions I also have to catheterise myself at set times to stave off incontinence. Altogether, it may not sound like much, but when just getting on and off the bed takes minutes instead of seconds, not to mention getting yourself from A to B, my days seem to go alarmingly fast. The rest of the time though is my own and I’ve been determined from the start to make use of it.

The staff often joke that now I'm independent getting in my chair, they can never find me. Now I don’t know, but I’d make a guess that at least some of you reading this have stayed in hospital for more than a night or two. If you have, you will appreciate the lack of peace. Buzzers going, trolleys clattering (they always seem in need of oil, or wheels that aren’t square!), staff busy rushing from patient to patient… and contrary to popular belief, you would I’m sure also testify that bed space curtains are in no way soundproof. For a week, or even two, this alien situation had been annoying but bearable. 5 months pass, and you start to go a little stir crazy. Cabin fever I think they call it. That’s why I don’t often stay on the ward. There’s beautiful gardens here, and so (if I’m not off gallivanting with visitors or family) I can be found sat reading outside. I’ve actually lost count of how many books I’ve devoured in here. At first I was going to study, but I have lapsed into reading fiction to get away from my own thoughts and reality itself. I feel bad that I’ve lost myself in fictional worlds instead of studying, but it’s hard to concentrate and absorb when your mind feels like it’s spinning multiple plates. When your life changes so dramatically and there are so many unanswered questions, the anxiety of the future can burry you alive.

Questions have been a theme from moment zero, but I think less about ‘will I walk again?’ or ‘will I have kids?’ anymore. Instead I’m consumed by things like ‘what sort of place will I be living in? how will I manage on benefits? how am I going to cope at work? what happens if I piss myself at work? what if I fall off the shower chair when I’m on my own?’ It goes on and on with infinite variations on similar themes. I've therefore taken some advice from one of the counsellors here, to maybe give myself a break. I’ve always been hard on myself; the counsellor and team feel I am ‘extremely’ hard on myself, but it’s part of how I’ve made it through. No matter what shit is thrown at you, you just have to keep ploughing on; that’s alway been my take. Yet I’m starting to realise, that if I keep on keeping on through the shit storm, I’ll arrive at the other side weighed down with excrement and foul smelling. So this time I am trying to take shelter and clean myself up, maybe get some protective outer clothing before I add in further stresses. I’m trying to be kind to myself. Sometimes I think I try to play down the enormity of what has happened in order to survive; whether disbelief or denial I couldn’t say, but I'm acknowledging more often that what I’ve been through is more than enough to deal with for now. Maybe its okay to concentrate on just being well in my body & soul and to relax - however, how the f**k do you do that ,when it can feel your life is splintered like ragged remains of a storm. Anyway, I’m therefore trying to build stuff into my weeks that make me happy – even if some of those are scary ‘firsts’ in my altered body, (I can't seem to help but jump in the deep end). I’m sure most of you have seen such things, for example going swimming in a public pool for the first time.

Hydrotherapy sessions here are in great demand, and whilst it was therapeutic for my state of mind, (water baby through and through), I wasn’t doing much official physio ‘therapy’, that would justified me taking up a slot. So I took it upon myself to find somewhere that I could have a dip. Cardiff international have a pool hoist – or so my research told me - so happy days and bring on the water! The only disappointment was that I couldn’t go on the flumes!. In hindsight it wasn’t the best idea to go just as the school holidays commenced, but it was still good. The pool hoist however was for the Olympic pool only; for the leisure pool they had an entirely different contraption. I posted photos of it a little while back - a self propelling aquatic chair. To use it I had to be able to transfer into it, which with no removable armrests basically involved my fiancé grabbing my ass, (any excuse!), with my arms round his neck and ‘pivotting’ me. This was less than elegant, but the important thing was it was doable. The only sadness was I got the feeling they don’t often get people like me in. I guess I am a minority now, but I refuse to bow out of things because of that. Obviously, this invention only works with graded entry pools or beaches. You wheel yourself into the water, and when you start to float the chair tips out from underneath you and can be stored on the side.

Again, it was school holidays, therefore TONNES of people to watch me as I entered. That was nerve wracking, but I also felt quite defiant. Yes I am disabled, but hell yeah I’m gonna have just as much fun as anyone here. Once in the water though, for those who hadn’t seen my glorious decent into chorine, I looked like any ‘normal’ individual. Except the only way I can ‘swim’ is on my back and I soon found there was little room for my particular brand of skulling without hitting into people – oops! More than once I got scathing looks when I couldn’t make avoidance maneuvers in time, and when I'd try I'd over balance and throw my head under water. So I ended up wrapping myself round my fiancé and bobbing around. Unfortunately to other couples, (who didn’t know that, if I had working legs, he would have had to catch me before I’d submit to such PDA), saw this as some kind of cute couple challenge and soon there were multiple canoodling bobbing pairs. I also had a lot of anxiety about where my limbs were. Having recently taken skin off my foot – after it had fallen backward off my foot plate without me knowing, (you know no feeling and all), and trailing behind me for a undetermined stretch of pavement, which I only realised when a stranger caught up with my shoe – I was conscious that my legs weren't hitting the sides, or scrapping along the bottom. Eventually, I relaxed though and managed to have a float and a giggle. Part of this new life is exploring what works.

Now digressing for a moment or two, I want to address something that's been bugging me. Most, if not all of the photos I post show happy smiles. I wont insult your intelligence; as I’ve let on, (more frequently than I perhaps mean to), it’s not a constant giggle in here. I recently said, to two great friends, that I worry this is why some of the people I thought would fall over themselves to support me – as I would them – haven’t bothered to visit or even message. That they’re afraid they’ll find me a sobbing wreck, in a setting that reeks of human tragedy. Believe it or not there have been a number of people like that. People who were in the selfies of some of the best nights out, trips and gigs, people who I spoke to almost daily or always wanted their opinion, and vice versa. Even worse, those who came to see the car crash victim, just the once, get a selfie on facebook and then have disappeared into the ether with nary a text. I get that life goes on, that people have their own troubles to deal with; that some people can't handle the situation, or don't know what to say… so I’m not angry – just sad sometimes. I know there have also been those who I never would have thought cared so much, yet have truly been there for me. I guess they always say, through things like this you find who your true friends are.

Anyway, the point was that I worry there are those who 'can’t face' seeing me, because they’re apprehensive of what they might find. I understand that. It’s a reflex to look away from distress. I guess you could expect to find depression and sadness; if not in me specifically, then in the unit. The people here have profound life changing injuries. We are each at different stages of grieving for what we’ve lost. Time and time again, I have said I haven’t met a bad person in here; yet we are all stories of tragic accidents. The losses go beyond just mobility. Some have lost hobbies that defined their personality; poor hand function, meaning guitar and golf are no longer ‘realistic’, when you barely have the dexterity to dunk a biscuit in your cuppa’. Some have children they can no longer pick up or hold properly; that wont remember when their parent walked. Others have lost the ability to work when they aren’t even 30. The sadness could consume us if we let it; and who would blame any of us for being depressed? It would be ‘understandable’ maybe even expected? But I tell you now, that is not in any way the majority of what you’ll find in here. We aren’t led crying 24/7, staring at the ceilings and fretting over our unfair circumstances. I mean, f**k yeah each of us has those moments, but in-between each of us are the people we were before – just a little weathered from the storm. I’m still me. I am not the chair. I am not my injury. Actually some of the most positive, hopeful and supportive people I’ve found through this, are in here with me. By rights this place should be a sad place, but mostly it is filled with determination, mutual support, a sense of humour, (all be it occasionally warped), and fast made friendships built in the fires of adversity. Sometimes laughter is the greatest medicine, and friends, an invaluable crutch. So yeah, it isn’t a constant giggle in here… except sometimes it is.

The friends I’ve made here, and even some who have just been acquaintances, have been invaluable to keeping me going. On the ambulance ride to rehab I met my first fellow inmate, an ex-english professor with a razor sharp wit. As I began my long recovery, still on strict bed rest and in pain, he would make sure to come by my bed and talk to me of many things ,(cabbages and kings), and just hold my hand. Another gentleman took to doing this as well, he’d heard there was a ‘youngster’ in and was relentless in making sure I knew that I could do anything I set my mind to. The ladies in the bay were kind as well, and made me feel welcome; despite being led flat they always made sure I felt included. The ones that could move would come to the bedside to reassure me, tell me their stories and give me hope. They always put me in mind of three mother hens, clucking over me when I was sad or in pain. Naturally some people grow closer than others, and I feel almost like part of my ‘neighbours’ family. I saw her daughter bloom during her pregnancy and am now happily watching her sink her teeth into Motherhood, with a natural air. I watch the baby grow and happily accept cuddles at every opportunity.

Eventually, when I was able to explore the ward, I met other patients; all of whom have been kind and encouraging. We support each other. You begin to learn each other’s moods. When one of us is having a bad day we all know without speaking about it. We talk about things, that you’d only ever breach with family or your closest friends, with ease; knowing we are each going through the motions - bowel motions are a great example topic. I’ve also found 2 fellow misfits in here, and we’ve become a tight group – for confidentially reasons I'll refer to them by their nicknames; The Bike and Cat. We are the 3 amigos, so to speak, but an odder partnership you’d be hard pressed to find – with me a 26 year old lass and the others 40 and 60 year old men – but we sure do have a laugh. Our friendship is based on piss taking and pranks; the amount of abuse I receive, well it’s just not on, but I give as good as I get. In fact, I should probably admit I started it by giving the bike a hard time in the gym. He is fortunate enough to have some leg function preserved and so he’s able to take some steps using a frame. I, of course, full of friendly encouragement would wolf whistle and sing ‘Shake ya Ass – Mystical’ whenever I saw him up-right.

We’ve now become so close that no topic is off bounds, and even the most disastrous and embarrassing situations, become not so bad with each other to laugh it off. For example, the story behind the cats nickname. Now I’ve searched for a delicate way to tell this anecdote, but I don’t think there is one. Part of SCI is a loss of voluntary control of bladder and bowel, (oh yes this is that sort of story), plus loss of sensation related to the need to relive oneself. Well the cat has struggled with this and has had several accidents, including one where he shit on the floor in the bike’s room. After this we took to calling him the cat because ‘he shits on other peoples property’. This may seem shocking and cruel, (and that’s before mentioning we meow when he enters a room), but making something that is ‘no joke’, (and - speaking from experience – pretty damn upsetting), into something we can laugh at, is just a way of coping. Don’t worry we also know that each of us could come to the other and talk properly about concerns and distress, and we regularly do just that. We keep each other up. We reassure each other that we aren’t alone in this. That it doesn’t matter if you shit yourself, because I do it sometimes too. We keep each other sane, by making sure we go off the ward and out for a cup of coffee and cake; just for some semblance of normality. We are determined to keep having a giggle, and grabbing life by the nuts, because we’re still alive - and we're determined to feel that way. It is with these two fine gentleman, that I have started playing cards in the evening; plus a few more sterling misfits. We hunted for a pack of cards one night - as many of us were just sitting round after visitors left, waiting for tablets or the evening cuppa - and now it's become a regular appointment. We have such a laugh, we've even started sharing snacks like a proper little school club.

This is why it can be so sad when someone moves on that you're close to, especially as in here there's usually short notice. Although you are happy that they've done so well, and are moving forward on their journey, you're sad to see them go. I was almost wobbly-lipped yesterday when the cat was shipped off for 'discharge planning' at his local hospital. Things won't be the same. I've still got the bike - even if he's a grumpy old goat - but I'll miss my other comrade dearly, especially as he'd help push me when I struggled on the hills, (I’m struggling with carpal tunnel lately; 2 steps forward 1 step back, but I guess at least I'm going forward). Not all of these friendships I talk about will last. We are crutches for each other, but eventually we will all leave this place and life goes on. However, I know some of the people I've met here will not just be remembered kindly when I look back in 5 years, but permanent fixtures in my life. If it hadn't been for this accident, I'm sure our rag tag bunch would never have been the friends we are. While I will never be thankful for what happens, I am grateful everyday for my new found friends.

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