If I ever make the mistake of feeling sorry for myself just once on this personal odyssey, I have no doubt that I will be lost into an ugly world of self-pity and despair. It is only through positivity and clearly voicing my personal goals that I can ever hope to achieve them. Write them down, believe in them, buy into them without question and if you can then re-read them a day or two later and still believe they are achievable then you’ll have taken a huge step towards being, to perhaps paraphrase Mahatma Gandhi, the change you want to see in your world.
A positive mental attitude with all its plus characteristics of faith, hope, optimism, courage and good common sense will guide me through to the very end of this journey. Without wanting to seem preachy in any way at all but this is the way I have chosen to my way to find a desirable outcome regardless of my current circumstances. I do not care if positive thinking is a by-product of success or the driver behind it, all I care about coping with, surviving and beating my injuries.
I am in control of driving my ongoing rehabilitation forward and nothing can make me feel bad about myself if I don’t let it. I cannot be easily defined by facile labels such as ‘Disabled’ or ‘Paraplegic’, I bring more to the table than just those two things, no matter how broadly accurate they might actually be, they only actually serve to generalise. It ignores the fundamental nature of humanity to try and pigeon-hole individuals into playing a role. When no matter what angle you look at the so-called ‘Disabled’, there is nothing typical about me, just another person in a group that covers the same broad spectrum of colours and shades as everyone else in the population. We are far more powerful as individuals than mere labels and the assumptions they serve to obscure.
I chose to live in the moment, when it would be far easier to run away and hide because life is too serious and this is not a practice run, by taking control I choose to take responsibility for making the tough choices and making the change in my life, by embracing the here and now whether it be an obstacle or an opportunity. When you have come back from your own death-bed it’s time to take control of that new found perspective and stop fussing over the little things in life that don’t really matter at all. Life is only hard and unfair when we insist on complaining about trivial things believing that we’ve lost the ability to change the things about ourselves that are crying out to be tweaked.
I don’t lack for courage, I have the heart of a lion and the only thing that really scares me is falling into a rut, unable to make any forward progress and be trapped in my own implacable stagnation. My sense of self, more than anything else, determines how much I allow the world around me to affect me. I refuse to be limited by artificial ceilings that others seek to impose on me, that’s their assumed reality and not mine.
I am fortunate that I already have more than enough to beat this affliction and should not spend time dwelling on what I may or not lack. I am grateful in the here and now and to be just me, to be here still in with a fighting chance by using what I have and not focusing on what I might lack. I have already come a long way towards escaping my injuries and I am eternally grateful for that and don’t waste any time bemoaning my lot and that’s not from arrogance but simply because I happily acknowledge my own good fortune in having almost everything I need to make the changes I am working towards.
I just need to stay focused, line up the dominoes and knock them down. It’s not out there, somewhere hidden and impossible to find and it was never out there, to begin with, with help from everybody around me the strength to solve the challenge of my injuries has got to come from inside, nobody else can do it for me. Just got to open my eyes, take a good look around and not allow any distractions because it is time to delve deep, deep inside and find that hidden strength. Though it might take some time, the key is hidden just out of sight, the connections haven’t disappeared. They’ve just been damaged and forgotten what they should be doing, all they need is to be reminded of their actual purpose, it’s just like riding a bike, downhill and blindfolded in the dark. Difficult, dangerous and if you’re really lucky it might somehow, just about be possible!
Got to keep calm and stay grounded in the present. It doesn’t matter how close or otherwise it might seem that I am getting to the end of the journey, got to stay focused on the immediate problem at hand, falling over again will only add another three months to the journey as I know from painful experience. Cannot allow frustration to take over, got to stay in precise control over my action otherwise the whispered messages won’t get through to be heard against all that unnecessary background noise. Will only be able to relax once my movements have taken more unconscious control. Lose even the limited control over your actions that you currently possess and there’s only one person who is going to suffer once that’s gone and nobody is going to want to pick up the pieces if that were to ever happen.
Life and learning is always about the journey and not the arrival. As painful as the journey has been at times and as much as I’d like to forget that I ever got sick, blocking out the journey would also take away everything that was learned on the way. The whole experience was undoubtedly the toughest thing I have ever been through in my entire life and I have only made it this far because of the help and assistance I received on the way. Life has no guarantees, the lightning strike of an Aortic Rupture can happen to anyone regardless of how well they might look after themselves, not everyone woke up this morning and not everyone will go to bed tonight either. Life isn’t ever going to be easy, it was never supposed to be but there’s and the decisions made along the way can only be made by one person, yourself. Life is a blessing, live every moment to the fullest and every moment is precious, unfortunately, I had to nearly die before I learned that particular lesson.
In Hospital, transferred from surgery in the Operating Theatre over to the ICU I had been turned into some kind of human-pin cushion, a huge assortment of needles and dialysis tubes poking out of me at all different angles. I had been in a very bad, very precarious situation over the first few months of my hospitalisation and had shown intense fortitude and typical stubbornness to fight back to life.
I had come far closer to my story coming to an end than I would really ever like to contemplate or indeed my loved ones are prepared to discuss even to this day and for that, I will be eternally ashamed of myself for putting them through every unspoken, unnecessary and heart-breaking second of it all. Though I am fully aware of my good fortune and luck to have been given a second chance at life, a chance to show everyone just what their love, support and concern quite literally means to me.
Many people from my time ICU were not so fortunate and never made it out to see the outside world again. I myself had been given only a very limited chance of ever making it off the operating table and cannot help but think to myself that there must be a reason just why I managed to make it this far. Even if it was just to write this story down and share my experiences with anyone who might be in the same unfortunate situation or even just curious to know a little bit more living with spinal cord injury because there’s just not a lot of literature out there on this particularly narrow and highly specialised subject.
In ICU my dreams had been vivid, intense and hallucinatory, powered by what likely was either Morphine or Benzodiazepines, but were fortunately relatively benign and far from nightmarish. The dreams were if anything just surreal and included everything from seemingly real images of trips to Heaven’s Waiting Room, Vampires hiding out in the Hospital basement, alien kidnappings, mass abductions of patients in the thousands, poisoned Banquets given in swanky hotels, Love Amongst the Bedpans, drips full of Whiskey, transforming robotic beds, murderous Orderlies, sadistic Doctors and vindictive, bullying Nurses. None of which was of course actually true but it all felt very real and absolutely terrifying at the same time. Even today some of those images still remain with me, waiting to sneak up on me and smack me upside the ego should I ever be careless enough to let my guard down and allow them back into my thoughts.
Unfortunately, under the kind of heavy sedation, I had been given to keep me placated, malleable and easier to control me simply reverted to a near-feral state, acting solely on instinct and completely beyond reason or appeal to anything approaching good nature. The amount of anaesthetic I had been given took back to nothing less than base urges, if I had an itch then it absolutely needed to be scratched and nothing and nobody was ever going to stop me from doing exactly that.
I had never really liked tubes especially invasive one’s going into each and every available aperture available to be used for delivering or extracting something from or into my body. Even before I got sick I fought with all my might against them, even needing to be anaesthetised to check my stomach with an endoscope on a previous visit to the hospital and this drug-fuelled hulk was just too strong and far too unpredictable to be controlled by any other means short of being shackled to the bed.
Slowly beginning to enter back into the real world my first challenge was learning how to breathe again. After months fighting off the lingering effects of my surgery and battling against a number of infections incurred along the way I hadn’t even been breathing for myself and had machines doing it all for me, I don’t think I had ever been quite as weak before and hope that I’ll never return to the perilous state of having machines keeping me alive. I am eternally grateful to the fact that no pictures exist of me in that state or have absolutely no recollection of that nightmare situation at all.
Without those machines doing everything I had quite literally forgotten how to breathe for myself and every time I was taken off the machine I just couldn’t find my own breath, gasping and dizzily panicking for air is definitely one thing I never wish to experience ever again. Feeling utterly useless and completely pathetic, no amount of morphine led to a restful sleep those many nights that passed before I at last mastered doing something I had taken entirely for granted my entire life. A life lesson learned the hard way, never take anything for granted. Ever!
During this time both my parents and my younger brother flew over to see me. Undoubtedly they were probably incredibly nervous and feared the worst, it is an unfortunate truth that all their nervous energy went to waste and I have little or no memory of my Father’s first few visits and only burgeoning recollections from his last visit over, images of my Mother being in the same room as me are blurred and fuzzy and of my Brother all I can remember is just how much I hated his insistence on grabbing at my palsied right hand. Now, of course, I can understand just why he was doing it but at the time I prayed for the strength to grab my hand back from him.
It was quite a big deal for them to fly over to Japan from their little corner of Northwest England, entirely out of their comfort zone and even though my wife did go to the airport to collect them, just navigating Tokyo on their own must have filled them with real trepidation, my only defence is a lack of memory of what must have been a hugely challenging experience for them all which is as bad as no excuse even given the drugs that were coursing through my system at the time.
I started out in ICU by breathing through a tracheal tube pierced into my windpipe and when I started to come to was completely unable to speak but was too far gone to put everything together and realise my own limits or the reasons why. In my addled mind there was no connection between breathing and speaking and at first, when the tubes were removed I struggled so much just to breathe and had absolutely no latitude to even think about talking and so the disconnect was further reinforced.
When I had first come to immediately after the surgery and before subsequently taking a turn for the worse when my kidneys gave out, I had lost the ability to speak Japanese but fortunately remembered again after only a couple of days. Now my only communication tool was a sheet of paper with the Japanese script hiragana printed on it and my addled mind just couldn’t quite fathom out just what was going on. I grasped the concept about pointing letters to spell out words but despite the fact that I could speak Japanese fairly well before getting sick, none of that seemed to have any connection with the intensely foreign, language system I was now presented with as a means to make conversation.
No matter how much you intently stare at Hiragana it will never turn into the English alphabet or even follow the same system of rules, trust me I tried out that particular option with absolutely no success whatsoever. Inevitably frustration won out and I launched the paper across the room rasping half-uttered profanities from the hole pierced into my throat. Eventually, I got the message across to tell my wife just two words. ‘Coffee‘ and ‘Bitter‘.
Apparently, I was being fed a coffee flavoured supplement through a tube and the flavour lingered and repeated in my stomach. As not much of a coffee fan and having no clue at all as to just how it had got there, I couldn’t understand why I could always taste nothing but coffee and absolutely needed to communicate and get stopped as soon as possible. I cannot recall that story even in my own mind to this day without feeling incredibly guilty. Sorry Miko, no excuses yet again I was completely out of order! More so the complete lack of anything approaching empathy I demonstrated by me returning to consciousness after months in a coma to angrily tell the love of my life just those two words. Coffee and bitter, again I was testing the patience of a saint.
But now in September, 2018, I sit down here for the first time ever to pour out my soul and bear my innermost and most embarrassing of thoughts to record an ongoing journey undertaken in defiance of many of the finest medical minds I have had the pleasure of meeting in the ensuing years who told me in no uncertain terms that I would never ever be able to walk again, but I have news for them. I started to walk with a frame a few months back and the only thing that is holding me back from progressing further at the moment is a lack of stamina and the fundamental weakness in my back at just about the same place on my back as I had undergone the most damage.
It’s seemingly always just been about my back even from the days I would sit in a wheelchair and needed to hold on for dear life, terrified that I would overbalance and tumble down onto the floor. But that’s OK, identify the weakness, build on it and improve it until it’s a strength, wise words that could almost have come from a Dummies Guide to Rehabilitation. Now, I can sit on a balance ball while the house shakes around me and not turn to jelly in absolute panic, it’s taken a long while to build up the necessary muscles in my back to mean it’s no longer an issue. The next target is my gluteus maximus muscle, specifically on the left-hand side of my buttocks, wake that up properly and I’ll be walking. Hopefully, I’ll be able to build up, enough stamina along the way and then it’ll be the last step on the journey, fingers crossed.
Now my back is stronger than it has been at any point since my injury though the pace of muscle development has continued to be a real source of jaw clenching frustration. Although it would be wrong to lay all the blame for my current situation solely on my back, it’s a collaborative effort and all my muscles are going to have to pull together and get me out of this by working in tandem to allow me to stand up under my own strength.
To bring everyone up to pace before I forget myself once again as I had just done and rush blindly forward through this story without giving everyone any pertinent and necessary information, the backstory (and no, that is not meant as a pun!) to all this is basically I lived through what I am reliably informed was the excruciating pain of my aorta blowing up and stupidly managed to tough it out for four, long painful days until the extent of the damage had spread to the point that I could take it no more and needed an ambulance called to my place of work.
With what I now know is an utterly dubious family history, it no longer comes as a surprise that my thoracic aorta should choose to rupture seemingly out of the blue that fateful Sunday morning. Extremely rare and very dangerous, the breakage of the largest artery taking blood throughout the body from the heart can be deadly. It’s a sad fact that most people die before even reaching the operating room, so in waiting all of 4 days before going to the hospital I really was playing with a loaded gun, to allow the tear through the inner wall of the aorta grew and grew. Although I did go and have a scan but only at the local clinic and not a large hospital where I should have gone and because of extremely low blood pressure with blood leaking out of the tear in my aorta it is perhaps not surprising that memories are hazy and I wasn’t making particularly good decisions in the days before it all got too much and an ambulance was called.
Needing emergency surgery to save my life, there were complications and as a result, I am damaged at or about the 12th Thoracic vertebrae in my back. So everyone please learn from my sorry example and get yourself to hospital, these days most everyone even in the North of England where I come from has forgotten that Hospitals used to be Workhouses and the stigma has diminished to almost nought and so if you ever feel some kind of twinge or pain, go before it’s too late. Don’t be stupid like me!
In simple terms not enough blood reached my spine and starved of oxygen the connections in the nerve tissue died off soon after, an injury so slight that it can’t even be seen by the finest and most hi-tech MRI scans but significant enough to mean that I am sitting here in a wheelchair to write these words.
Like me having a SCIWORA (Spinal Cord Injury WithOut Radiological Abnormality) the term devised recently to describe a person with a Spinal Cord Injury that doesn’t show up clearly on an MRI scan is relatively unusual and usually involves the cervical spine because trauma to the thoracic spine is usually protected by stability provided by the rib cage. With the precise mechanism of injury and associated pathophysiology being open to debate and symptoms including numbness, weakness of the limbs and loss of bladder/bowel control which can and do persist in many sufferers. Typically caused by the usual suspects of motor vehicle collisions, falls and sports injuries as well as a lack of blood supply to the spinal cord. Very rare with the bulk of cases happening in children, outcomes are usually good, so I have more reason to be hopeful but nothing to curtail my ongoing programme of rehabilitation, as long as I keep getting better with the more and more that I undertake.
My ongoing story is a testament to the fact that all paraplegia is not the same, there’s a huge difference between accident caused injury and impact trauma where damage can be permanently visible and injuries resulting from the operating table which quite often isn’t. The difference might very well be extremely moot but I know which one I’d rather have to battle against if given the choice, philosophically I’d rather face down a perceived enemy rather than a tangible and very visible one that is intent on staring angrily back at me.
In simple, child-like terms Paralysis means an inability to move, sense or control body sensations. True enough maybe but it’s infinitely more nuanced than that and depends largely on the extent to which a person is immobilized over time as physical therapy, changes in health and sheer, dumb luck alters the way the body is able to respond to the physical damage it had suffered.
Unfortunately and very unusually, because after all life is never supposed to be simple, I also suffered two strokes because again not enough blood got through this time, to my brain. Peculiarly, and very fortunately those damaged areas were not used for anything important like thinking, feeling, hearing, sight or breathing and only seem to have resulted in relatively cosmetic damage when compared to losing the ability to walk. So I am lucky that I hadn’t used up all the space in my brain and certainly wasn’t nearly as smart as I always thought I was.
This impairment is permanent and can still be seen on CT scans in two different and distinct, locations on both sides of my brain and as a consequence, my feet turn inside on themselves. I also suffer from drop foot with spasticity in the antagonistic muscles because my brain is no longer sending the appropriate messages to keep it in its proper position, all of which makes it difficult to transmit all the muscular strength I have built up in my muscles properly through my legs as well as meaning it took much longer to build up those same muscles too.
On top of that my right hand, which I had always used to write with and favoured in every sport or activity I ever played before I got sick is palsied and the tendons in my fingers are too tight and painful to allow me to make a fist or even bend my fingers adequately to enable me to type freely but I am doing my best now to battle through the pain and discomfort and am typing this using both hands. This Spastic Hemiplegia has been caused by the simple fact that my brain is damaged and no longer sending out the appropriate messages to relax and without that simple message, my hand was seemingly petrified when I first woke up in ICU and the simple solution is to re-establish that communication. Like some stereotypical fly-on-the-wall documentary about members of a dysfunctional family all that is needed is just to get everyone talking again to each other.
Though to be honest the movement my hands currently have is a world apart from the slabs of meat they once were. I might not be perfectly content with them now, because despite the fact that they are moving far more freely they still retain a bit of tightness and consequent pain but how many middle-aged people do you know who really love every part of their body without question or complaint?
Pushing yourself hard to face up against the pain with little in the way of immediate, visible improvement is far from easy but never mind, it’s all rehabilitation and ignoring it will only allow it to regress even further. And for that alone, my little project in writing all this down using both hands is a form of catharsis and my hand continues unabated in its progress towards getting back to how it really should be. Living in Japan more than anything I want to be able to use chopsticks when I go out for something to eat and not have everyone assume that this ‘Gaijin’ just can’t do it. Though I am sure that if this missive should ever as far being published then the proof-reader is going to have a terrible time digging out all the typos in this UXB ridden manuscript that has been created without a properly functioning Spellcheck and a wilful child of a right hand. (Sorry :D)
Looking back over the last few troubled years, I don’t think I ever had it all explained to me just why I was unable to walk, least not so far as I am able to recall. Undoubtedly during my time in the hospital ICU unit a Doctor had taken time out from his busy schedule to tell me everything in excruciating detail just why I was bedridden, though unfortunately at the time I was probably so completely out of my mind on morphine that the memory is no longer with me.
The storage of memories is a very complicated process, and for all that typically I might have a very good memory, all memories associated with the trauma of my life changing injuries have been suppressed, redacted in the name of self-protection. This dissociation serving to limit the connections between my thoughts, memory and sense of self during the traumatic experience I had gone through. In much the same way that the body can wall-off an abscess or foreign substance to protect the rest of the body, the brain can dissociate from its’ experiences to allow the brain to wander off and work to avoid the memory. When the trauma threshold breached a sub-conscious switch hidden in the far recesses of my mind and my memories were locked away, with my last recollections coming from the day before my aorta ruptured. Just hope that when those memories do get released back into my consciousness, that I am able to cope with them, without being overwhelmed. But, that is all just something that I’m going to have to look forward to, as a sign that I’ve completely gotten over that traumatic period of my life. If and when that happens, I’ll just have to take it as a positive sign that the trauma is so far behind me that those memories were OK to be released back into my conscious, waking thoughts.
There was no epiphany of understanding, just the slow, dawning realization of my body’s new limits and the little differences in the way other’s interacted with this new, paralyzed me. There was no anger, denial, bargaining or depression either. I went straight to acceptance without passing Go and collecting 200 pounds because the evidence was so compelling, the truth of my paralysis so evident. Though that doesn’t mean I have to just give up and not try and overcome my injuries because it’s time to busy myself back to living my life how I want. For all that my life has turned nightmarish, I am thankful to be still here in the land of the living and have resolved to do everything in my power, no matter what it takes to rectify the situation. If anything I find it more difficult to accept a lack of personal aptitude than I would be willing to shirk from hard work.
In seeking out the positive side and reaching out to find the potential inside I must admit I didn’t spend any time meditating. I know it can make a difference for others as much as I know that it wasn’t for me, as a person with Spinal Cord Damage I am already much centred in the now and in the present moment because that single reality surrounds and envelops everything I do each and every day.
Having left hospital it was important to take time and learn just how to smile again because after all, so the cliché goes, it does take fewer muscles to smile than it does to frown. But nothing forced and over the top because there is no truth in that and any benefits would likely be easily ignored by a cynical mind like mine. Forced laughter does undoubtedly result in the release of endorphins, there is also very real contention that exists as to whether they do produce tangible benefits with recent research suggesting that the human brain is able to distinguish between real and fake laughter but I suppose that all comes down to how far you are willing to go to trick yourself. As for me the smiles and tangible relief on being out of an institution, at home and in the company of my loved ones were very real and I didn’t need to fake a thing.
I am fortunate that my wife is a truly exceptional individual who has never wavered from the determination that I was going to be able to walk again. Her single-mindedness has helped see me achieve so much and it will be what sees me over the finish line. As two distinct personalities I am sure there were times in our youth where we would certainly once been accused of being negative thinkers but maybe mathematics is right and two negatives do make a positive because like some chemical reaction, mix us together and what results is nothing but, positive and with her support and encouragement there is no doubt in my mind that I will be able to walk again one day.
Both of us are fully aware of all the challenges that come with battling against Spinal Cord Damage and living with a profoundly injured person. Instead of deceiving ourselves with pretty lies we have always been bluntly honest enough to come up with practical solutions having looked at the problem from every conceivable angle. Our thoughts have never strayed to the negative, by changing the tone of our thoughts from negative to positive we’ve been able to make significant progress, with the tender, loving sting of her whip driving me ever forward.
If there is a victim in this story it definitely isn’t me. I might be the principal actor but am certainly not the victim. If there is a victim it has to be my wife who has witnessed every stage of this story at first hand and still retains all those terrible memories in her mind or perhaps my former company who lost a relatively important member of the team at a crucial business juncture, but definitely not me and that makes me focus on getting busy taking responsibility, to try and put my life back together. In life there are always choices, I can continue to fight or I can change my focus to mastering life in a wheelchair as many other people in a similar situation to me do each and every day. The decision to try and walk again was selfish one and I have no alternative but to take full responsibility for that.
It is important to not ever get too tied up in yourself, I am neither perfect nor exceptional and I have made more than my fair share of mistakes in a relatively short life. All I can do is take those mistakes on board, learn from them and move forward because all I want to do is to be able to walk again and to me that doesn’t seem too unreasonable or outlandish. Come the day that I feel that I am chasing the impossible then I will be the first to put my hand up and call time on everything and as of today, I’m thankful that I don’t have any reason to make that decision.
Take time out to appreciate what you already have, moving forward and aiming ever higher is all well and good and indeed a natural symptom of human life. I have spent my entire life striving towards self-betterment, not for financial reward but for its own sake and to become the best version of myself I could possibly be. My Spinal Cord Injury has done nothing to change any of that. There is no doubt in my mind that my life-changing experience has given me a new perspective on a lot of things, my priorities changing and giving me a completely new focus on the way I approach even the simplest of challenges.
Create a list at least five things that you are grateful to have, there’s no rush to put down absolutely anything down so take your time and come up with a properly definitive list to write down on a piece of paper to refer to if you should ever need to remind yourself just where your priorities lie. This is my list; Miko my wife, my life with all its fragility and unwritten tomorrows, my health and making sure that it never takes a turn for the worse again, my Home with the big balcony that I used to go out on and use all the time before I got injured and the blessed opportunity that I have been afforded to dedicate myself to getting back to walking on my own two feet.
Though to be honest I never sought out the background information as to just why I was no longer able to walk either, even after I had regained all my faculties and ultimately what does it really matter? Must admit I am not really all that interested in the minutiae of details as to just why I can’t do it. At this point so much of any sense of self-worth is intrinsically linked to the progress I am able to make in my training and so really why I would deliberately hurt myself by buying into the notion that I won’t ever be able to walk again.
I fully accept that I am permanently damaged and am very unlikely to be hitting the ground running any day soon but that doesn’t preclude me from ever walking again. I have met people who have been injured far worse than I am, who are now able to walk around inside their homes and by taking time to break down the problem, piece by piece into short-term achievable goals and by looking forward only towards the forthcoming days, the weeks and months can be left to look after themselves as time continues ahead unheeded in its relentlessly inevitable progress.