At no point have I wasted any time in the ensuing years wishing I was blessed with special abilities and was more like the fantastic Zebrafish, native to streams and rivers in the Himalayas and the rest of the Indian sub-continent. With its remarkable ability to recover full movement just 4 weeks after an injury to its spinal cord. Like humans, the zebrafish has glial cells, which were once commonly thought to be the glue of the nervous system that keeps everything together while also acting as coordinators to repair damage and keep everything in order and working properly. However, in Zebrafish they proliferate to such an extent that they can penetrate the scaring that surrounds the injured area along the spine to span the injury site allowing for recovery with no visible wound at all.
No, I am not wasting my time hoping for the power of transmogrification and neither am I waiting in the hope that one day soon science might conjure up a miracle. I am sure that given time science will manage to come up with something, I just want to get on with living my life and get back to contributing to the world outside my window and not just looking at it from a distance. So instead, I choose to channel my inner Zebrafish and fight with all my will and strength against my paralysis for as long as I am possibly able.
To give you a better idea of just what paralysis really feels like, try this little trick. Extend your other fingers whilst tucking your middle finger into your palm with your hand extended on a flat surface like a table top. Press your hand down firmly and try to lift your ring finger up off the flat surface leaving the rest of your hand still in contact with the table top. The others can all move, but for most people and I include myself here, just not the ring finger. It’s absolutely impossible and incredibly frustrating too. No matter how much I cajole the finger to move it just won’t budge. It doesn’t matter how hard I concentrate and reach out with the force like some improbable kind of Jedi it’s not going to ever move for me. I hate the feeling and still can’t get used to it despite the fact I am paralysed, to begin with, and should be far more used to than I apparently am. Now imagine that same feeling spread throughout your body, for me, it’s my legs and you might get a better sense of the abject frustration as well as the pure, unadulterated elation that would come from one day seeing a slight twitch of the foot.
Basically, paralysis is the inability, whether temporary or permanent, to move some part of the body. Typically due to nerve damage as opposed to any specific injury to the affected region. My legs no longer work not because they’ve been damaged but the connection that allows for the carriage of messages to them has been. Specifically, in my personal case, an injury at or about the 12th thoracic vertebrae in my spinal cord has disrupted function at points below that injury and I am unable to walk despite the fact that my legs are as healthy as they ever were.
After Spinal Cord Injury, damaged neurons and axons along the spine are unable to generate or carry messages beyond the point of injury. Consequently, the injured person loses sensory information and muscle control and is no longer able to properly determine the current state of their body or interact competently with their surroundings. The organization and production of movement requires precise subconscious coordination between the central nervous system and the musculoskeletal system. Damage to the spinal cord prevents normal function of the sensory, motor and reflex feedback loops. Taking back conscious control over these activities is a tremendous amount of re-learning. Just imagine the time and effort it would take to make a conscious decision on precisely where to put your foot each and every step you took. Fact is uninjured people don’t need to waste any extra effort thinking about walking they just do it, allowing them to only concentrate on the important stuff like the direction they want to go in and exactly where they are heading towards. Without the need to concentrate all their efforts on trying to create their own unique quantum compass in their mind.
If it’s possible for even professional sportsmen and women, normally so much ‘in the zone‘ to feel pressure while playing their chosen sport. It should come as no surprise that people will quickly lose control of their gait and posture when pressured to overthink the simple act of walking that they’d been doing without thinking since childhood. Even the best and most able natural athletes need to practice a lot each and every day at their chosen sport. There are real benefits in repetition to enable the creation of muscle memory.
Even my experience has shown that the more I do, the more subconscious and easier to achieve those actions become. Every athlete regularly performing a motor skill notices over time that it becomes increasingly fine-tuned with more practice. Allowing the movement to become automatic through repetition and practice with the brain hardwiring the motor skills into long-term memory. Despite the fact that as a person with Spinal Cord Injury I shouldn’t be able to do so, I am supremely lucky that I can also make that kind of progress, and the more rehabilitation I do the better I get because somehow or other the signals along my spine are somehow actually getting through as they should.
All of which really encourages me and despite my injuries and my inability to walk, I am lucky not to have completely lost all the communication of signals along the spine from the brain that impacts so heavily on many of the other people placed together under the same ‘paralysed’ catchall grouping. Many of whom have unfortunately lost the basic abilities that can extend to touch, grip, temperature control, breathing, bladder and bowel control, swallowing, talking, blood pressure and sexual function. The acceptance of that fact isn’t easy, why should I be so lucky when so many of my compatriots are not? Despite being unable to walk, I still feel like a traitor, a quisling amongst other people with Spinal Cord Injury but I am also supremely relieved to have been so fortunate.
I haven’t been lucky all my life, or not at least as I have been able to notice and I don’t believe that the five years and counting spent in a wheelchair and unable to walk is a sign of good luck either. There’s no doubt in my mind that in making it off the operating table alive, surviving the long months in ICU, my kidneys shutting down and requiring a dialysis machine to the fact that now, I am being able to make progress in my ongoing rehabilitation are all wonderful pieces of good fortune. My only regret is that the other people I’ve met with Spinal Cord Injury along my journey have not been able to share that good fortune with me. Yes, to mistakenly paraphrase Thomas Jefferson, the harder I work the luckier I am but I can’t help but wonder if that all there is to it?
Yes, I suppose I would consider myself a person who always looks towards the good in any situation, a positive thinker and an optimist but optimists don’t get lucky by accident. Bad luck is an inevitability for everyone at some point in their life and good fortune is only borne from relentless hard work. Ultimately people need confidence and bravery to join in regardless of the situation and the realisation that there is a power that comes from positivity. We can all be beset by misfortune and freak storms, all that matters is that we weather them out and emerge from them strong enough to be labelled as being lucky without allowing the extraneous and the superfluous to play needlessly on our minds. If anything luck is just a perception held by others and nothing that anyone possesses in greater quantities than anyone else.
Nobody can ever realistically hope to control the economy, the weather or other people but it is possible to identify hidden opportunities, trusting in yourself, accepting help from friends and loved ones to move forward decisively. Don’t over-analyse and rely too much on pure logic, the brain discerns subtle, complex patterns that go beyond conscious understanding. Go with your instincts and trust your gut reaction, don’t silence your internal alarms just because they can’t be explained scientifically. I only got this far because I followed a route that was the one that appealed to me the most and although medical opinion might have acted as a discouragement in trying to move forward, the path of hard work and rehabilitation was always beckoning.
People who find themselves being called lucky actually just take risks and make their own luck, they are actually far from lucky and are just courageous. I don’t feel heroic or brave for pushing forward with my rehabilitation programme. If anything, there have been points when I’ve absolutely terrified myself when looking down with nothing between me and the floor below, but I am far more worried by the prospect of losing everything I’ve gained so far than doing nothing at all about my injuries. When you sit down in the cold light of day and try to predict the path ahead, it is far easier to see the risks of doing than it is to accurately gauge the consequences of inaction. When it all comes down to it, it’s easier to go toe to toe with an enemy that you can see, than another one you can’t even imagine. Personally, I’d rather face uncertainty than persevere in a situation that makes me miserable. By stepping out of my comfort zone and ignoring short-term safety my focus is solely aimed towards leaving this lifestyle behind.
For all that a bad thing has happened to me in getting a Spinal Cord Injury, I absolutely refuse to buy into any form of victim complex. Just because a bad thing happened to me once, doesn’t mean that I will be unlucky for the rest of my life. Even if I was playing craps, I am not going to roll snake eyes for as long as I live. I refuse to allow the wheelchair I sit in now to define me or my future, life is what you make it and I am intent on making the rest of my life a good, successful and productive one. After all, you can only see a beautiful rainbow because it’s raining outside.
Must admit that previously I had never really much liked this phrase, but having flatlined and not even had my own heart pumping blood around my body it has taken on a new meaning. I feel that if anyone should be able to use it then why not me because now I know it to be true, what doesn’t kill you only makes you stronger! I don’t look at my injuries as being a setback but an opportunity, an opportunity to take a good, hard look at myself and grow as a person. My glass has never been and will never be only half full, the adversity that I face now can become my best teacher and allow me to create new opportunities for myself.
Apparently fairly common in my family but not knowing at the time, I was very surprised to have nearly died from a burst aorta. I say nearly because obviously I didn’t actually die and am not writing this from beyond the grave. Thanks to the skilful response of the medical professionals at the hospital I was taken to I have been given a second chance at life. Let me tell anyone curious enough about it all, nearly dying is both hugely overrated and very much nothing to brag about. Me, I went to the toilet early one Sunday morning, spent a few days telling my wife that I was in pain and would get over it soon enough. Before a few days later being taken to hospital in the centre of Tokyo where I confidently talked about just how much I was looking forward to going away on holiday with my wife to Atami before going into surgery and nearly dying. I have no conscious memory of slipping away. Just a bizarre dream about being transferred to another firm in charge of medical logistics and going to a very swanky Japanese restaurant with a group of doctors. Where I drank far too much and got a very bad bout of food poisoning that made me feel incredibly drowsy, lethargic and dead on my feet. Before I was taken to sanitized, modern building much like a Japanese Town Hall where I was made to fill out my own application for the afterlife but was rejected because I had filled out the section about my wife in the wrong coloured pen. All very surreal and utterly strange, I’d hate to think what an oneirologist would make of it all.
I saw no loved ones at the end of a tunnel. I didn’t have an out-of-body experience, and I definitely didn’t get all touchy-feely with Demi Moore at a pottery wheel. None of the stereotypical stuff that happens on the silver screen happened to me, my afterlife was more Monty Python sketch than Cocteau’s ‘Orphee‘ or Koreeda’s ‘After Life‘. The only the cinematographic twist was the fact that the inside of the Town Hall was bathed in an ethereal and intensely bright white light but that was probably just the operating theatre lighting. Beyond that, the whole experience was so painfully traumatic that the anaesthetic I had been given allowed my imagination to soar and replace reality with a conveniently posited alternative hallucination.
Yes, it hurt. It absolutely must have done, prior to that day, I was entirely comfortable with hospitals, needles and any amount of pain. I must have had an inordinately high threshold for pain or I wouldn’t have been able to walk around for four days with a tear in my aorta. Now something deep in my subconscious kicks in whenever I even see a needle. It’s hard for me to imagine the circumstances where my health got so bad that the doctors needed to do such unfathomable things to me, involving brutally invasive surgery to drag my soul back into my body.
There were needles, lots and lots of needles. And machines, very serious looking machines that I was connected to keep my circulation going. While the doctors tore open my chest, cracking open my rib cage to have a poke around inside. Fortunately, once the anaesthetic being pumped in through a scarily large tube had kicked in I had lost consciousness and was in no condition to be concerned about any graft that was being put into my aorta to fix my thoracic aneurysm.
In fitting the graft into my aorta, like a patch on an inner tube, I was put into Deep Hypothermic Circulatory Arrest (DHCA) with my blood diverted from the heart and lungs and rerouted outside my body. At this time the normal functions of the heart and lungs, including circulation of blood, oxygenation and ventilation were taken over by the Heart-lung machine I had been attached to. Which allowed the surgeon to operate on my aorta in an environment largely devoid of blood. With my heart not beating during this time and the extreme cold allowing my brain to flat line, it was like something out of an old-fashioned sci-fi movie and I was plunged into an uncomfortable no-mans-land of effectively being dead yet having machines keeping me alive.
Although the fun didn’t stop there and I spent the next few months heavily anaesthetised in the Intensive Care Unit lying flat on my back. Hooked up to dozens of tubes delivering sustenance and yet more magical potions after my kidneys stopped working and I had to be put on a dialysis machine. It was now that the staples in my chest were removed with a very serious looking pair of pliers and I grew a beard to rival Grizzly Adams.
If you think friends, family and loved ones nag about your lifestyle now, try dying in front of them one time. For extra emphasis do it with a medical condition that is generally thought to be exacerbated by lifestyle. It doesn’t even need to be true when anything heart-related can allow for that conclusion to be made. Not even a family genetic line so murky, that in the name of full disclosure I should probably have been made to declare it as part of my wedding vows can be used as an excuse. Once you make people worried, they are never going to let you forget. Now, everyone comes ready prepared with a helpful list of things to change if I want to avoid it happening again. Regardless of the fact that I come from a long line in which an aortic aneurysm has claimed the life of almost every male in the lineage. It’s just unfortunate that I didn’t know that beforehand and despite everything, their advice is very welcome and they are right too, I do need to change a lot of things about myself. It’s just difficult to do a lot of anaerobic exercises when you can’t walk.
It’s a sad fact that worry is not an easy thing to forget. Inevitably coming back again and again, with any little ailment creating concern that something potentially fatal has yet again gone wrong with some part of my circulatory system. I understand and am grateful for the concern, if anything it would be worse if there was no concern at all. For all that it isn’t surprising to have every little twinge related back to my heart, it’s a frustration I have to keep hidden from view. After all, anyone who can spend 4 days playing down the pain of a ruptured aorta doesn’t really deserve anything but to have everyone waiting in nervous expectation, expecting the worst again. All that said though, I’d be a liar if I said that I liked it.
All of this happened more than 5 whole years ago and in the intervening years, I have been forced to do some real soul searching. Immediately after my time in Intensive Care, the outside world was absolutely terrifying. If nothing else, I’ve got some perspective of just how fragile I really am and how much I rely on others. Having read up on aortic aneurysms, even though I might have an existing family weakness I also realise that I was effectively hit by the proverbial bolt of lightning. Unfortunately, I come from a long line that is perhaps the genealogical equivalent of the area surrounding the Catatumbo River that feeds Lake Maracaibo in Venezuela which has the highest recorded number of lightning strikes in the world. Members of the Eckersley clan are just more likely than most to get struck down by a bolt out of the blue directly to the aorta. Though, of course, when I try to blame my genes I’m really just blaming myself.
Yes, I did gain more perspective even though the first few months were fairly shaky and it took a while to learn to trust my own body again. Although there is an upside, I have the perfect excuse not to do anything that doesn’t really take my fancy as well as the ultimate stand-up routine at any bar, once I can stand up at one. Excuses, beer and bad jokes aside there will come a day when we all shed this mortal coil because not one of us is here forever. We’re all going to die, my brush with death really brought that fact home to me with a bang. I now know that I am not invincible and am deeply embarrassed for ever behaving as though I thought I was, but I am not as afraid of dying as I once might have been either. If nothing else, the five months I spent in ICU has taught me to cherish the fleeting glory of life but it also instilled in me a deep-seated fear of needles and tubes.
Death no longer terrifies me as much as it had once. Though I’d rather not be at work but doing something completely different, far, far away, when it comes knocking for me again. I understand that much of our fear about death is entirely rational. Based on concern about how our surviving loved ones will cope emotionally and materially without us which is completely founded and entirely justifiable. My incomplete recollections about my brush with death were no more physically painful than anything I’d previously experienced. For me that seemingly mysterious process in which my self-aware conscious self simply faded away has been demystified.
Previously, I’d had little direct experience of death and the subject rarely comes up amongst polite conversation. Though, I remember being chided by my Grandmother when a distant relative had passed away and my childish mind couldn’t understand just why the small terraced house was shuttered in gloom and the curtains firmly closed. My younger self just couldn’t understand that if Auntie had gone to heaven to be with the angels and was now in such a wondrous place, then why weren’t we happier for her? With society organized in such a way that the dead are quickly removed from us, I soon learned to grow up having dread for the unfamiliarity of death, aware that it wasn’t a subject for polite conversation.
People are afraid of pain, we all have had bad experiences and our memories are often seared with the sting of pain. Of course, pain is no fun whether we witness it or experience it directly ourselves. With pain coming from damage to our living tissue and death the ultimate destruction we easily come to assume that death must be the ultimate, extremely painful experience. Since nobody who has actually died can tell us what it felt like physically, we naturally have a terror of the unknown and death in particular.
However, rationally and from a medical point of view, there is no particular reason to suppose that the intensity of pain (or other discomfort or impairment) experienced alongside dying is greater than the intensity of pain from various illnesses and injuries. The pain involved is likely less than that which we’ve already previously experienced. Most certainly, far less than the pain that others have already experienced and survived to tell the tale. Furthermore, dying in and of itself does not necessarily involve painful processes – some forms of death are painful and others are not. Many acute injuries are actually more painful afterwards than they are at the moment of injury.
Though, let’s not sugar-coat things, my brush with death was intensely painful and definitely not something I want to ever revisit. Even though I don’t have much in the way of direct recollection from that time, those I do have are all intensely traumatic. For me, the challenge is to move forward, I’ve not been destroyed by my life-changing experienced. Just physically weakened but my life can still be fulfilling and the direction it moves forward is for me to decide and nobody or nothing else can make that decision for me. I can see no worthwhile reason to dig deeper into my own nightmare scenario, even though I’d managed to endure that extreme pain. I sleep better at night with those memories locked away somewhere completely inaccessible to my conscious mind.
Death, from a biological point of view, entails a complete and utter extinguishing of consciousness, being dead will not ‘feel’ like anything. There simply will be no ‘you’ to do the feeling. It can be hard for us, as egotistical creatures to imagine that the world exists independent from us, whether or not we are there to experience it or not. We’ll never really know that we’ve just died. We might be able to feel ourselves slipping away, but there isn’t going to be a ‘you’ who is capable of determining that it has actually happened. Indeed, as put forward by the Greek philosopher Epicurus, ‘why fear death when we can never perceive it?’
Every night we go to sleep and that itself is in many ways very similar to the process of losing consciousness due to injury, illness or anaesthesia. People may gradually feel themselves losing consciousness, but nobody actually experiences unconsciousness itself, unless they are in a light state of unconsciousness with only partial awareness, or they’re dreaming. Indeed, people who have been resuscitated after technically being ‘dead’ for a few minutes do not describe the experience of their loss of consciousness any differently to those who’ve lost consciousness from non-lethal, transient causes. And why should they? The notion that the process of dying is in some way distinct to anything we’d previously been able to experience doesn’t make much sense. Despite having come close to death, I am more terrified of becoming diminished by my disability, unable to get better and losing myself in a bottom-less pit of negativity and despair. I am less scared by the process of losing consciousness than I am by the terrible notion that I would no longer be able to interact with my loved ones at all. Forever how much time I have left, I have resolved to lose my fear of that unknowable realm and do my utmost to live a life of positivity and engagement, dedicated to those around me. When death does come for me again, it’ll find me here, happy amongst the living.
Of course, my behaviour has changed and I am conscious of eating more healthily and drinking far less than I had ever done before. Now, I’m seeing real progress every quarter when I go back to the hospital for yet more follow-up tests. Though more than anything else I have consciously decided to cut stress out altogether. Now whenever I start to stress out about something, I ask myself: Do I have any control here? Yes? Good, change it. No? Then forget it. Hell, at least whiskey and cigars used to make me feel good. Vices give you some pleasure in return for ruining your health but what has stress ever given back to anyone? Death is just another part of life, stressing out over it could just make it happen sooner.
As I’ve said, I am incredibly lucky to be still alive and having flat lined, my heart stopped and with the dubious benefit of hindsight, experienced the uncertainty that waits beyond. I’ve been given an extraordinary opportunity. It would be remiss of me not to do everything I can to make my light burn even brighter still. It would be equally pointless to go out of my way and put things into my body that are only going to hurt me. It’s time to treat my body with the respect it deserves and go about living my life in a better way. Living a life more conducive to success and not welcoming to needless worry and stress.
Failure is never inevitable, I refuse to believe that life is a game that anybody is ever pre-determined to lose. There will always be setbacks and disappointments, a slight shift in the weather can end up with your parade getting rained on. In being positive and expecting to be successful, whatever bumps in the road I might encounter are just that and nothing more, not even a sudden squall will be enough to stop me moving forward.
I’ve also been very fortunate to have progressed accompanied every step of the way by my wife, whose encouragement and confidence that together nothing is impossible has provided the backdrop to this journey. Her single-minded optimism is contagious. The shared belief that together we can beat my injuries has been key to enabling me to fight back by always looking on the bright side and never giving in to pessimism and fear. There’s no doubt in my mind that I’d be in a far worse situation if I didn’t have her around to support me, she’s my lucky charm who puts a smile on my face and allows me to continue facing down my challenges.
So, I think we’ve reached that point when it’s time to clumsily get back once again to the science and the Spinal Cord which functions to enable communication between the brain and the rest of the body. Containing nerve cells called axons that carry signals both to and from the brain. With all the information needed to activate and control movement travelling down the spinal cord from the body to the muscles in outlying parts of the body. At the same time feedback information from senses such as touch, pressure and heat are relayed back up the spinal cord to the relevant parts of the brain that deal with them.
With 3 people a day told that they’ll never walk again and over 2.5 million people with injury to their Spinal Cord, that stretches for only about 45cm. It is a surprisingly common injury that usually comes from very preventable causes such as a falls, traffic accidents or sports injuries that occurs most frequently in young adult males as a cross-section of the general population.
Unfortunately, it doesn’t all end there either, people with spinal cord injury also must contend with the associated risk of developing debilitating and life-threatening secondary conditions such as deep vein thrombosis, urinary tract infections, pressure ulcers, osteoporosis and respiratory disease. On top of which, with recent studies also showing that standing up has health benefits, sitting or lying down for long periods of the day increases the risk of type 2 diabetes, cardiovascular disease, and endometrial, colon and lung cancers that can lead to a premature death. Yet another reminder of the fact that I need to escape the sedentary lifestyle that my injuries have forced on me, before sitting down all day does me in once and for all. Sometimes it doesn’t just rain, it really pours!
The medical profession will try and define spinal cord injuries as either being complete or incomplete. In a complete injury, the spinal cord has been damaged to a sufficient extent across its entire width to result in a complete loss of muscle control and sensation at points below the level of the injury. Whereas for an incomplete injury some areas distinct from the initial injury may remain intact allowing for the retention of some degree of function, sensation and muscle control below the injured area. Here just like me, the messages do actually get through but they are far too weak to allow for normal functioning of those areas below the site of the injury itself.
When the spinal cord is damaged, as in a fracture or dislocation, the bones in the vertebrae can crush and compress the delicate spinal column. The initial injury results in severed axons and damage to neurons but often also leaves a number of neurons and axons intact. However, when the damaged cells die, they release chemicals that are toxic to the surrounding areas causing even greater overall damage. Resulting in the build-up of scar tissue around the initially affected areas.
All down the length of the spinal cord nerves branch off and exit from gaps between the vertebrae to innervate a specific part of the body by delivering messages in the form of electrical impulses. With the damaged part of the spinal cord corresponding to the associated nerves at or below that level; injuries can be cervical (C1 to C8), thoracic (T1 to T12), lumbar (L1 to L5) or sacral (S1 to S5).
With the level of injury defined as the lowest level of full function. Paraplegia or paralysis below the waist corresponding to damage in the thoracic, lumbar and sacral areas, Tetraplegia or paralysis below the neck affecting all 4 limbs is usually related to cervical damage. With the extent of the Spinal Cord Injury classified by the degree of impairment and can be achieved by testing based on pinprick sensation on the specific areas of skin that are supplied by a specific spinal nerve.
Getting back to what I had just mentioned, the next delineation that medical professionals will attempt to make is related to the ‘completeness’ of an injury. With a complete spinal injury, typically all functions below the injured area are lost. Whereas an incomplete injury retains some degree of motor or sensory function below the injury to the spinal cord. I am more than fortunate to have an incomplete injury, so I do retain some movement below the 12th thoracic vertebrae where the shortage of blood to my spine affected me most significantly. Though unfortunately to ascertain whether I retained sensation below T12 the principal test is for sensation of the areas innervated by the 4th and 5th sacral nerves. Which, specifically is the anal sphincter and I was probed with such rigour that in my morphine fuelled ICU dreams I began to suspect that I had been abducted by aliens.
Both the observable signs and the symptoms experienced can vary hugely depending on where the spine was injured. With a painful, tingling sensation in the surface of the skin supplied by the affected nerves serving to confuse adequate diagnosis. Furthermore, an accurate analysis of the injury is also made difficult by factors relating to the level of consciousness of the patient and will require differing levels of stimulation to elicit a response in different individuals. Out of my mind on morphine and being the kind of person who sleeps like a fallen tree in a forest I hate to think just what kind of strength was used when testing me.
Injuries to the 3 different areas of the spine; cervical, thoracic and lumbosacral will obviously impact differently on the specific spinal nerves affected and the extent of paralysis suffered. Injuries at or above the lower back and pelvis (lumbosacral) result in limited control of the legs and hips. Impacting the ability to control the bladder and bowel functions causing faecal and urinary incontinence as well as sexual dysfunction after injury. Thoracic injuries typically result in loss of muscle control in the trunk and abdominal areas as well as affecting the legs but able to maintain the function of the hands, arms and neck. However, the ability to control blood pressure and body temperature can also be compromised with the potential for dramatic complications occurring years after the injury. Lastly, injury to the cervical area often results in some form of tetraplegia with control hindered in all four limbs depending on the severity and location of the injury. As well as impacting on the ability to breathe freely and can result in decreased heart rate, dangerously low blood pressure and problems regulating body temperature.
Typically requiring treatment in an ICU unit, people with Spinal Cord Injury will require months of rehabilitation therapy before being discharged. Even then the amount of functional recovery and independence achieved in daily life is often tied to the level and severity of the injury. It is a sad, sobering fact that Spinal Cord Injury generally results in some form of incurable impairment even with the best possible treatment. Thankfully most people suffering from an incomplete Spinal Cord Injury are able to recover some amount of function but returning to walking freely is a hugely foreboding mountain to climb and not one that everyone is going to be able to scale.
Me personally with a mild, incomplete injury at the T12 vertebrae, I stand a far better chance of using my legs than somebody with a more severe, complete injury at about the same place. However that’s all it is, a better chance that comes with no guarantees at all, though I will take that chance every time. In addition to the completeness and level of injury, often the individual’s age and associated health factors can affect the extent to how anybody with Spinal Cord Injury will be able to live independently and walk functionally. Having read a whole host of writing on the subject and living every day with my developing symptoms I see no reason why I shouldn’t be able to walk out of all this under my own strength. As for the unforeseen surprises hiding deep inside of me, waiting to reveal themselves at some inopportune point in the future, if I can beat this I don’t see why I can’t beat them as well. For only two letters in length, ‘if’ really is a big word!
Thinking in terms of ‘complete’ and ‘incomplete’, with complete taken literally to mean total or whole, whereas ‘incomplete’ is imperfect. Perhaps living with an incomplete Spinal Cord Injury is one of the few times where I have ever counted myself lucky to be thought of as being imperfect and still a work in progress. Indeed, like a great many others, I have come to think about understanding nerve injury and muscle paralysis in very simple terms, with partial paralysis better than total paralysis. But, is it as simple as that? Is an incomplete injury better?
Ultimately, in the world of Spinal Cord Injury, the term incomplete tells us both a lot and very little at the same time. Of course, for people like me an incomplete injury that doesn’t involve total paralysis or complete loss of sensation, my spinal cord isn’t completely damaged or disrupted but beyond that it doesn’t really tell us much else. The effects can be so mild that it results in no muscle weakening or any visible sign that a Spinal Cord Injury ever took place. Or it could be so severe that it leaves the sufferer completely devoid of sensation so that the injury may seem no different to a complete injury. Typically for most incomplete injury sufferers, the truth lies somewhere in between these two extremes. Yes, there’s always hope that some degree of function can be recovered, especially in the early days. Though it’s always debatable, at what point does an injury change from new to pre-existing? I suppose that it ultimately depends on the length of string that is used for measuring.
Spinal cord injuries that do not cause total paralysis have the best chance of seeing so kind of recovery. With studies showing that only 1 in 7 people with complete paralysis are able to recover significant movement back compared to 75% of people with incomplete paralysis able to get significantly better. Even those with complete paralysis have a good chance of recovery if they were able to retain sensation in the lower body immediately after injury. About 2/3 of those with neck injuries who can feel the sharpness of a pin stuck into their legs will eventually get enough muscle strength to be able to walk. Of those with neck injuries who are only able to discern a light sensation on the same test, about 1 in 8 may eventually walk. The sooner that muscles start working again after a spinal cord injury, the better the chances are of additional recovery, especially for walking. However, when muscles come back much later, after the first several weeks, research shows that it is much more likely to be in the arms than in the legs.
Admittedly, I am perhaps an unusual case. I am yet to meet anybody else who like me is battling both Spinal Cord Injury and Brain Damage. The longer my rehabilitation goes on, the more I feel that my biggest enemy is Brain Damage and not my Spinal Cord Injury. So, what about me? More than 5 years after my injury, what are the chances of me ever walking again? I’ve scoured the internet looking for encouragement, without ever finding the one specific example that I am looking to find. Truth is, there’s no easy answer. Five years after injury the chances of my paralyzed muscles starting working again properly on their own is depressingly small. Though, it is also true that, as long as I’m seeing some kind of improvement and additional muscles recovering function, my chances of seeing more improvement are better. Even 5 years after the injury, I am managing through hard work and daily training to wake up new muscles. Though for the ones still asleep, the longer I go without seeing improvement, the lower the odds are of improvement just starting to happen on its own.
In the middle of fighting against my injuries, I am not without hope even though the clock is ticking against me. Every day I religiously do my rehabilitation hoping that today is going to be my breakthrough day. When, at long last all the pieces of the puzzle fall into place so that I can put these last few years behind me and get back to walking again. But still to no avail! There are days when I feel glad to be only ‘incomplete’ and filled with hope and there are days when impatience turns to frustration. When knowing that it could have been so much worse is no real solace. Caught between a rock and a hard place, with an injury that could have been much worse and a life that can’t get any worse. Being pulled in 2 different directions, being patient and waiting with the burning desire to get on with living my life impatiently bubbling away inside.
Honestly speaking, I had been putting off writing about this stuff, I didn’t want to allow these thoughts into my mind and now they’ve snuck inside I feel absolutely terrible. A Gordian knot sized tangle of twisted muscles lodged deep inside my stomach churning away in a sea of slow-burning adrenaline, harassed and antagonized by emotions that I don’t want to feel. More than anything I need to calm down and remind myself that I’m allowed to still be here and alive. It’s OK to feel grateful that my life isn’t even more overwhelming than it already is. I must stop feeling guilt and regret about everything I’ve missed during these past few years, things that are now lost forever. It’s tough because I haven’t only lost those things myself, I’ve taken them from my loved ones to. The stress, worry and pure physical hard labour demands placed on my wife in caring for me are huge and are beginning to take more and more of a toll on our relationship. I need to start walking soon not for my sake but for hers.
It’s the time to know, to really believe that things can only get better. Whether I get a lot or just a little bit of recovery, things are still going to get easier. Try to strike a balance between now and the future. I don’t need to do everything today and I don’t need to put my life off until tomorrow. No matter how much recovery I have, my life will be different, in some way. There will be problems I’ll want to take steps to avoid; there will be adjustments that will be required. With the right awareness and planning, different doesn’t necessarily need to mean worse. Never forget, Spinal Cord Injury or not, it’s OK to feel anxious!
If anything my main worry moving forward is the decreased life-expectancy of people like me, with Spinal Cord Injury. Which is not unpredictably far worse than the uninjured population but if that is my fate, then so be it. I can only play with the cards dealt me and having nearly died once already, I chose to live the rest of my life to the fullest. Unafraid and with no regrets about things that are beyond my control.
In my particular case, I am unable to walk despite the fact that can sense touch and feel other sensations in my legs. Although these feelings can veer depending on the day from the remarkably precise to being totally out of kilter with reality in strength and intensity. With my brain unable to relay effective messages to my legs because of incomplete damage to my spinal cord keeping me off my feet. However, for others the paralysis might be due to an inability to communicate signals due to Brain injury. Or even with the Brain being unable to either send or receive signals because of a Spinal Cord Injury more complete than mine. The Spinal Cord is the Brain’s relay system, passing on messages from the brain to the relevant, parts of the body and when something in the spinal cord doesn’t work or is injured, paralysis is often the unfortunate result.
I apologise in advance if any shock or alarm has been caused to more delicate readers. Living with Spinal Cord Injury is full of inconvenience, embarrassment and is far from a bed of roses. My sole intention in writing all this down is to be as honest as possible and that can only be achieved by telling the story without any embellishment or half-truths. This story has been written warts and all, no offence or shock is intended or should be construed by anything included here. There is no point in telling anything other than the whole truth about my own experience of living with Spinal Cord Injury. At no point do I believe that my experience is in any way definitive. If anything experience has taught me that although there might be similarities, my circumstances and that of my injured friends can and does vary hugely! Taking time out here to go back and re-imagine every step of this journey would only serve to dilute the integrity of this account. I have been bluntly honest in writing about everything that has happened during the past few years from a first-person perspective and have exercised no self-censorship. To do justice to this story I must put everything aside including my own delicate sensibilities and any sense of self-consciousness.