It has taken me almost five years since I was first diagnosed with Spinal Cord Damage to sit down here today in front of my computer. To sit down and write about my ongoing fight against my injured Spinal Cord. Not enough blood was able to get through to my Spine and I suffered significant damage on the operating table whilst a team of highly-skilled Doctors fought long and hard throughout the night and into the early hours of the morning to save me from dying from a ruptured aorta and no longer being here to tell any stories ever again.
Thanks to the kind of hindsight that only recovering from a near death experience and living with paralysis can really provide, the cold, hard and brutal realisation that I’d been going about things in completely the wrong way by living life vicariously and with no kind of planning at all. Life has taught me the hard way to wake up and take much better care of myself because having looked into the abyss I know that there’s nothing of interest for me there. Life needs to be treated much more seriously or it’ll reach back and smack you hard across the face.
For me, my injuries are an opportunity to grow as a person, to become I should’ve always been and never quite managed to achieve. It hasn’t been easy and I don’t expect it to get easy any day soon, tough lessons learned the hard way are never going to be easy to forget. I know more about the dark corners of my soul than I’d ever wished to know and it has taken real strength to ignore the darkness lurking inside. The truest darkness, turned inwards on itself and away from the light, convinced that the light would never return. It has taken intense fortitude to move towards the light of home, family, friends and loved ones and allow that light to shine on me, to chase away the shadows that threaten to permanently extinguish all joy and hope. My challenge is not only learning to walk again, it’s also to keep those lessons close to heart and live my life the right way as I move forward.
Painful experience has taught me that only by approaching life with a heart full of gratitude, humility and positivity can I, disabled or otherwise, ever hope to be best prepared to live my life to the fullest and make a real difference not only to my own life and but also to contribute positively to the world around me. Just like any expat resident living in a foreign country, it doesn’t really matter at all to any of the good citizens of Japan just what class I flew in on, all that matters is how I spend my time in this wonderful country, contributing to the place that I am grateful to now call home.
On one fateful day in 2013, I suffered a thoracic aortic aneurysm from straining too hard on the toilet on a chilly November morning. The aorta, about the thickness of a garden hose, runs from your heart through the centre of your chest and abdomen. As the body’s main supplier of blood, a ruptured aortic aneurysm can cause life-threatening loss of blood. With ruptures of the aorta often growing slowly they can be difficult to detect, many start small and stay small. Predicting how fast they may grow in size can be extremely difficult.
Although for whatever reason, those four days of memory are no longer with me, probably just some kind of subconscious coping mechanism to block out all the pain surrounding my life changing experience. Which means that I’m having to rely on my wife’s recollections to write this section, trying to soldier on and fight through the pain was the stupidest thing I’ve ever done. Only going to a local clinic for a quick scan and not to a bigger hospital, has more than anything else, resulted in my Spinal Cord Injury, paralysis and no longer being able to walk.
To put it simply, I am now paralysed below the waist and am confined to getting around in a wheelchair. I can no longer do even the simplest things under my own strength, things that I’d always taken for granted like standing up under my own strength and walking to the bathroom. At present, I’m able to sense and move my legs but not enough to allow me to escape this wheelchair and am caught in some kind of purgatorial, hinterland with injuries sufficient enough to severely limit my movements but not bad enough to prevent all sensation and movement completely. That simple fact allows for a ray of hope in my mind, that just maybe with enough hard work and repetition I might be able to wake up my slumbering muscles sufficiently to be able to use my legs in some way close to what they were actually designed for.
Much like, as happened on December 19, 2008, when an underwater internet cable linking Egypt and Malta, a distance of only about 1,800 km, was damaged and caused serious disruptions in communications between the Middle East, Asia and the rest of the world. Resulting in some countries reporting significant reductions in internet capacity. The cable running down my back has been damaged and disrupted, resulting in a bottleneck, with connections slowed down and communications obstructed because for all that messages might be getting through, they are far too weak to be of practical use.
So there you go, got that out of the way early, I am paralysed because of damage to my spinal cord and currently have to get around in a wheelchair. Yeah, technically I say paralysed and the addendum is tagged on here because it is only the name attached to my medical diagnosis and not my status as a human being, not where I was born or even an indication of the prognosis and what I am going to be able to achieve in the future. The prevailing medical opinion is that I will never be able to walk again and how can I ever hope to deny the self-evident truth that my body has changed or the fact that, for now, I am completely reliant on this wheelchair that I’m sitting in now as I type.
I don’t go to sleep anymore dreaming of waking up and everything miraculously being OK. I go to sleep contented, pleasantly surprised by what I was able to achieve during the day and plotting and planning, scheming on how to beat my injuries. I am fortunate in having been able to make real progress in my ongoing rehabilitation, though currently my sense of self is fragile and it doesn’t take much to topple that particular house of cards. Take away my daily rehabilitation session and with it crumbles my mood and self-worth. Getting this far hasn’t been easy and I know that it won’t be getting any easier soon either. There’s no point in denial, I know that I am changed forever and the next step I am aiming at is getting around inside the house with a walking frame and hopefully one day take off these increasingly, painful nappies!
Trying to get better has become an obsession, my entire sense of self is propped up by the knowledge that I am making progress in the right direction and I’d hate to contemplate the day when everything grounds to a halt. Here I sit, living a life built on hope. The alternative is to languish in feelings of guilt and regret about every little mistake I’d made that brought me to this wheelchair, but that sort of thinking will only serve to chip away at me from the inside and cause even more damage to the person I am. For both mine and everyone else’s sake all I can do is move forward with hope in my heart and a smile on my face. Forward to a new tomorrow!
That I am changed forever would seem to be a fairly self-evident truth, I also know that facts are rarely permanent. Knowledge grows all the time, but that doesn’t mean that we gain any deeper understanding. What is held true now, likely won’t be held as being a set in stone fact in years to come. Popeye was a spinach-guzzler because a misplaced decimal point overstated the vegetable’s iron content. Science has always been about getting closer to the truth, and anybody who understands it at all knows that the continual transformation of accepted knowledge over time is how things work out. However, sometimes it can feel random and very unsettling. Smoking has gone from doctor-recommended to deadly. HIV infection would transition to full-blown AIDS and death only a matter of years ago before medicine learnt how to delay the progress of infection to allow sufferers to live longer. Eating meat used to be good for you, then bad, then good again; now it’s a matter of opinion. The age at which women are told to get mammograms has risen. We used to think that Earth was the centre of the universe, and our planet has since been demoted. I have no idea any more whether or not red wine is really good for me. Knowledge has a half-life, with scientific understanding growing by a factor of ten every 50 years and half of what scientists may have known about a particular subject will be wrong or obsolete in about 50 years. An engineering degree went from having a half-life of 35 years in 1930 to about 10 years in 1960. What I learned when studying for my Psychology degree was only of practical use for about 5 years after I’d graduated. More than anything, I’m looking forward to the truth of my situation changing as time moves inexorably forward.
For me, living with not being able to do even the simplest of things, has been a real test of mental strength, some day’s it can be far too easy to give in to feeling pathetic, weak and worthless. There is a trap waiting for anybody trying to drag themselves forwards towards what sometimes can seem like an impossible goal, which comes when the line between self-improvement and self-degradation becomes blurred. The fine distinction between ‘I want to be better’ and ‘I am not good enough’ is waiting to trap the unsuspecting and it has taken real focus to remain aware that though they might seem similar, very real and significant differences exist. It’s important to steer clear of negativity and dis-ease, I am not battling against my disability because I dislike the person it has made me, with or without the ability to walk, I haven’t changed at all as a person over the last 5 years. All I’m fighting for is my future and not feuding against the present. I accept that negative energy is a normal part of most everyone’s emotional guidance system and understand that obsessing on the negative, with all the powerlessness, shame and weakness it encapsulates is only going to make the task even harder than it already is. So I choose to battle against my injuries with a positive outlook on life guiding me forward.
Of course, there’s no ‘off-the-peg‘ universally applicable way to get better at anything, whether it be a weight-loss diet, personal development, building client relationships or rehabilitation after a life-changing injury. What works for some people might not work for everybody else, the best and most healthy approach to self-improve is the one that works best for that person. Coming up with a way to move forward has taken quite a bit of trial and error to discover the course of action that has brought me this far, not finding anything at all could have easily led to the worst kind of personal stagnation.
Unfortunately, I am very unlikely to ever meet a Fairy Godmother and there are no magic cures waiting around the next corner. Quick fixes are just a short-cut to disappointment and long-term sustainable change is best achieved in gradual increments. Real change is always going to take time, so I focus on one step at a time, knocking down the closest barrier before moving on to the next. I soon realised that no matter how much I wanted it, getting back on my feet and learning to walk again was never going to happen overnight. For me, overnight success was nothing more than a myth, a fantasy. The reality of my deliverance was never going to be easy, immediate or glamorous. It’s going to involve a lot of careful thought and planning to see me over the finish line. Properly planning my escape to give me control, by creating a plan to allow me to make the choices and decisions, rather than leaving things up to chance, or perhaps worse yet, letting others make the important decisions for me.
To quote that quintessential bad-guy, Lex Luthor in the film ‘Superman’, a favourite from my childhood ‘Some people can read War and Peace and come away thinking it’s a simple adventure story. Others can read the ingredients on a chewing gum wrapper and unlock the secrets of the universe.’ Getting out of my paralysis predicament wasn’t going to come from anything written by Tolstoy or on a packet of sweets, trawling around on the internet looking desperately for help has led to more cul-de-sacs than inspiration. The way forward, my way forward, was only ever going to come from within myself, I was going to have to dig deep inside to discover the solution to my own particular problems.
My approach to developing a way to get myself back on my feet has taken 7 distinct steps;
- Identify the problem clearly
- Understand the motivation of everyone involved
- Generate possible solutions
- Evaluate all the options
- Decide on one
- Put it smoothly into action
- Constantly monitor the progress made
During the early stages, it was important that I didn’t lose track of the simple truth, planning is a continual process that involves looking closely at where I want to be going as well as an understanding of just where I am starting from, to develop and implement approaches for moving forward. Prepare properly, don’t just start out by going to the gym twice a week, buy the gear that will make you look the part, so you feel as though you belong and to calm the nerves once you get there. Nothing could be worse than turning up shoeless on day 1. Also, don’t start out trying to make more friends by talking to the first 100 people you meet, get to know yourself better, your needs and wants, likes and dislikes, if you really want to turn those fleeting acquaintances into lasting friends. Only by establishing my priorities and by considering my personal needs, strengths and resources could I realistically hope to create the change I was looking for. Before starting out on my quest to walk again, I asked myself 3 questions. ‘What do I want to accomplish?’, ‘What needs to be done, to get me there?’ and ‘How will I know if I really am making progress?’ With those 3 answers in mind, I set out trying to plan my quest to learn how to walk once again.
There would be little point in embarking on any self-improvement quest if I didn’t have a goal in mind. It was important to choose a goal that was compelling for me and at the same time felt attainable. So, I started with a big, grand dream of getting back to who I was before my injury, walking unaided and reeled it in, working backwards to identify the steps along that path that would need to be taken. Aware of the muscles used in standing up and walking, I set about waking them up from their slumber and bringing them back online, onside and of practical use. Having a set of well-defined goals that can be tweaked and altered as needs be has kept me motivated and on track when challenges have arisen. As they inevitably would, when frustration has got the better of me, leaving me wanting to lash out at the world because I felt so completely useless and the only option left to me was to give up and accept that I was never going to walk again. Who knows, maybe walking sticks are the next big thing and if that’s what I end up using to get around it wouldn’t be all that bad compared to my current reality, there’s a lot of different ways to leave this wheelchair behind me.
Whatever I might be trying to do, I realized that I wasn’t going to get better without making a huge commitment to achieving those goals. In many ways, writing all this down before I’ve even gotten back on my feet is my pledge to overcome my injuries and anybody wanting to make a change in their lives would be as well to start out by writing down their goals before trying to achieve them. An accountability statement, as it were, to share with the whole world because I really believe that one day soon I am going to be able to walk again. Just doing that little thing, of committing my hopes and dreams to paper, has gone a long way towards helping myself to prepare for each day, to remind myself that I should be capable of achieving what I want. To remind myself of just where I am heading, and to help reduce stress when it inevitably rears its ugly head.
The simple act of making plans and committing yourself to them, almost guarantees that obstacles will pop up at some point on your journey. It’s like a softer version of Murphy’s Law, not ‘if anything can go wrong, it will’ but ‘don’t bank on everything going smoothly’ because the best way to negotiate the obstacles is to plan for them. I planned everything so well that I had an understanding of where traps were likely to be hiding. Just like in going to the gym twice a week it’s important to be aware that it’s going to take at least 8 weeks before you start to see weight loss and muscle increase. Even though you might not be seeing increased muscle definition, the benefits going on in your body and mind are still considerable. In trying to make more friends, remember that scheduling ‘me’ time into your day is not selfish, it’s a necessity. It will strengthen your relationships because only then will you have a saner version of yourself to take to the party. The best self-improvement approaches incorporate awareness that things will not always go smoothly and you must be able to adjust to them accordingly. If you are serious about making a change then you should have some list of potential pitfalls and coping strategies to help you deal with obstacles in a concrete way.
Like everybody else my stamina fluctuates and despite my paralysis looking otherwise completely ‘normal’ sometimes I think it would be a useful visual cue if I could wear a bright blue sticking plaster or a cast the length of my back to remind myself and others of my injury. However thinking more deeply on that choice, I’m never going to take that option even if it was available to me. People would eventually start to treat me differently and having normalised those interactions to myself, my behaviour would inevitably begin to change. Instead, when things don’t go as perfectly as I might have hoped, I need to remind myself that in doing the same action ten times, though I might do it amazingly well once and very poorly another time, the other 8 times are far more indicative of my body’s current condition. Just like a Bell Graph defined by the Gaussian Function, don’t worry about the extremes, focus on the highest point of the curve and try to group the results closer to the peak score.
Unfortunately, I have always been far too good at toughing things out and fighting through the pain that is placed before me. My poker-face masks all the turmoil and pain inside and I manage to make things look far easier than they actually are. Mostly, because I don’t want to worry the people who are supporting me by truthfully sharing just how much the nerve pain in my re-awakening legs bothers me or just how difficult I find the things I can actually do really are. After all, physically everything is still in the right place and I don’t look all that different to how I was before I got injured. If anything, I look as though I should be able to walk but can’t for some reason that’s hidden away deep inside, far out of sight.
When developing my plan of action, I got informed and read up on all the information available. Trying to make my journey as grounded in contemporary research as possible and not falling for gurus peddling miracles. Wherever possible I have tried to tweak my chosen approach to better suit the evolving reality of my situation. What works for my neighbour is not necessarily going to work for me. It has often all come down to a gut feeling or my level of comfort with a particular approach, figuring it out through trial and error or self-assessment, if needs be, and trying to match up with the approach that aligns with my personality traits. Knowing that if it isn’t a good fit, it’s unlikely to produce much in the way of tangible benefits. Lastly, and this is a dangerous one, I never forget to reward myself. It doesn’t need to be anything detrimental to the intended goal but it should involve some reward, anything that motivates me, for me that is half a day off once a week and a glass of wine, though I can’t speak for anyone else on this point – it’s up to them to figure out what that might be, just be careful not to overindulge.
More than anything else, the biggest thing that has helped me on my journey to get back on my feet has been awareness. The understanding of exactly what is wrong with me and what I am trying to change. Typically, awareness can be thought of in 3 different areas; physical, cognitive and emotional. When you are able to recognize the areas in which you are struggling, and have compassion for yourself, you will be better able to make a plan for change. In this way, the healthiest self-improvement plans always involve taking a step back, to sit down and get self-aware. For me, this involved putting my compulsion to always be on top of every situation to one side or risk obsessing over the slightest miss and never getting back whenever I fell off. I had to remind myself of the mind-set I had when I was younger and riding a BMX almost every waking hour of the day doing crazy tricks around town. If I crashed, I would unthinkingly just get straight back on bruised and bloodied, because taking the time to think closely about what had just happened would be terrifying in the cold light of day and I’d end up never getting back on again.
Planning and dumb courage might all be very well but even together they’re not going to get me over the finishing line. Instead, I’ll need concrete steps and a plan designed to enable me to reach my goals. It is not enough to simply identify goals, without an action plan to reach those goals you I’ll inevitably be left languishing. I defined the steps on my journey by the different muscles I was waking up along the way, wake up one and move on to the next. The difficulty comes when consciously waking up a specific muscle group and getting it moving properly before trying to step things up to unconscious movement, without bombarding the muscle with shouted messages to move as instructed. Although I am pressuring myself to go faster and real frustration can set in when things don’t go to plan, my journey doesn’t come with a specified deadline. Though unfortunately, day by day, that unspoken day when the rug gets pulled out from beneath me continues to draw ever nearer.
Personally speaking, an approach to getting better that left me with a sense of optimism intact has provided the healthiest path to take when facing down my injuries. This has involved positive support, mindfulness, and increased self-awareness to enable me to cultivate more optimism, without this safety-net there’s no doubt in my mind that I wouldn’t have got quite so far before being swallowed whole into a pit of perceived failure, despair and inaction. In moving forward, I’ve consciously allowed for readjustment along the way, by reflecting on past successes and mistakes, I’ve been able to evaluate what went well and what went wrong, how I could do things differently in the future, and where I still have room for improvement. All the while, remembering that any movement in a positive direction is progress no matter how small or how long it takes. It is better to follow a plan for self-improvement that has the above qualities and takes a bit more time than to try for a quick cure, eventually, all the time and effort I have invested will be rewarded.
Walled in by tangible psychological pressures and hounded by negativity and insecurity, the only way forward has been to consciously take the pressure off. It’s OK, to feel the pressure, everybody has felt the crushing weight of expectation at some time in their life. Move forward and accept, there’s nothing wrong with me, aside from an injury to my spine, I am still the same person. I just need to avoid focusing back on what isn’t working properly and aim forward towards the change I want to make. Self-improvement begins with letting go of the negative energy that was holding me back to allow myself to grow in the way that I want to. My journey of self-improvement should be more expansive if it’s to be really successful.
The improvements in my physical condition haven’t been achieved smoothly and have only come as a consequence of real hard work and effort, though all that is difficult to encapsulate by blithely throwing out words like ‘improvement’. In doing something relatively unprecedented like learning to walk again after suffering a Spinal Cord Injury, you cannot ever realistically hope for a 100% success rate in everything attempted. I have felt like I was failing far more often than I was succeeding, I’ve fallen over and broke both ankles and been absolutely petrified at more steps along the way than I would like to remember. Of course, the failures haven’t really outstripped the successes, it just feels like that sometimes, when basking in the murky glow of a mistake and forgetting all the victories that had got me to that point.
There have been weeks and months of seemingly treading water and not moving forward at all. With the goals, I so desperately seek remaining just out of reach but progress has been made when looking at things over a longer time frame. I always understood that what I was trying to do would take time, indeed it has already taken me 5 years already and still I’m not back walking under my own strength. It has been important to keep myself motivated and retain a sense of self-worth, to focus on the successes, holding them close to heart and maintain a sense of achievement to keep moving forward. Personally, I want to succeed each and every time but ultimately failure is inevitable, the key is just to forget about the odd slip-up. Put it all down to experience, learn from my mistakes and just try not to hurt myself unnecessarily. Without that mind-set I am absolutely sure that I’d have lost motivation and wouldn’t have been able to achieve the things I’ve managed if I’d spent too much time fretting on the little things.
As I’ve moved forward trying to get myself back, physically closer to where I’d like to be I’ve never been held back by a fear of failure. My only real fear is going backwards and getting worse, because of inaction that hinders the change I am looking to create. Most everyone is driven to be successful, it’s an innate drive that grows and develops throughout the stages of our lives. Failure, on the other hand, is seen as unacceptable but rather than be punished for encountering this negative experience, it is important to accept failure as inevitable and learn the hard lessons that only failure can properly teach.
With a middle path always available, the desire to succeed is not the opposite to a fear of failure. Indeed, it is possible to be afraid of both failure and success at the same time. If, nothing else, I’ve always been an avowedly decisive person and do not buy into the notion that external forces are in control of my life, making it inevitable that I either fail or succeed without ever earning it. Nobody is going to take away my success or predetermine my failure, that page is yet to be written. Playing with the cards I’ve been dealt, only I can determine where they take me and what I can achieve.
Aside from the inability to walk, I am very fortunate to have retained a degree of control of my bladder functions. I can urinate with conscious control but being unable to walk, I still need a team of helpers to visit my apartment to take me to the toilet twice a day. With medical advice recommending a daily fluid intake of at least about 2 litres a day, I am careful to heed this advice. I make sure that I drink enough water every day and all that has got to go somewhere. It never feels good to empty my bladder into my nappy, like a little baby.
Though the simple fact is, it’s something I’ve had to get used to, after all, if I can’t get to the bathroom, then it really can’t be helped. I’d run the real risk of further hurting myself and seriously damaging my insides if I struggled and tried to keep ‘it’ in all day until my wife came home from work. She already has enough to worry with about with her job without having to fret about my bladder movements. So, as uncomfortable and painful as my nappies might be there’s no getting around them, and I’m stuck with them until I improve enough and can get around the house more freely.
But this isn’t just a book about somebody living with paralysis, it’s far more than that. It’s about the coping strategies I’ve developed to allow me to grow into my disability and not lose any sight of myself during the adjustment. It’s about my journey of rehabilitation as I try to beat my injuries and get back to being mobile and it’s a layman’s attempt to come to come to terms with just what Spinal Cord Injury means from a first-person perspective.