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A Life on Wheels

December 31, 2014

A little over two years ago my lurcher broke his leg running through the woods. I imagine he got his left hind leg caught down a hole so that his leg stopped and his body carried on, snapping the femur in two and shattering the bone. He found his way out of the woods and limped home slowly, but he wasn’t in good shape. Attempts could have been made to save the leg, but putting aside the cost, I decided it was fairer to amputate and see if the dog could live a life on three legs. It was a toss up between this and having the dog put down, but I believe I made the right choice. He has a good life and runs around as much as he ever did. He thinks nothing of going on an eight mile cycle run and the only bit he complains about is stopping at the pub half way. He expects me to put a jacket down for him to lie on, lurchers are bony dogs and like their comfort.

I am often bumping into people who tell me that if he lost his other back leg then he could have a set of wheels strapped to him and he would get around OK. They tell me this by citing cases where people have done this with dogs. Whatever lengths people have gone to to keep their disabled dogs alive, I can assure you that no dog of mine will live a life on wheels. I will have no qualms about putting a bullet in his head if it comes to that. With humans, however, we do not have this option. I have no wish to debate the whys and wherefores, or the rights and wrongs, of euthanasia; it is enough here to say that the love we have for our fellow man ensures that we do our best to preserve life. We are not animals, we are entirely different creatures, and I have had to accept a ‘life on wheels’.

I am one of the lucky ones. I do not have a strong upper body, as many believe, but I do have the ability to use a wheelchair well enough to have always lived an active life with one. I don’t like the expression, ‘living in a wheelchair’. I do not and never have lived ‘in’ a wheelchair, but I have always used a wheelchair as a means of compensating for my inability to walk. At home I use a wheelchair in my kitchen and bathroom, but it is physically barred from the rest of the house. I shuffle along benches and crawl on the floor. I often leave my wheelchair at the front door in other peoples houses. Sometimes it is more practical to crawl in and other times I dread the thought of wheeling across their plush carpets. It’s like entering someone’s house without brushing your shoes on the doormat or without taking off your muddy boots. I often sit crossed legged on the floor, I sit in all sorts of chairs, including bar stools, and I drive a car from a normal car seat. I do not live ‘in a wheelchair’. As I said, though, I am one of the lucky ones and I am well aware that many disabled people spend their entire day sat in a wheelchair, from the moment they get out of bed till the moment they return to bed.

These days wheelchairs come in all shapes and sizes. Some are more like armchairs on wheels to give maximum comfort and good postural support and others are designed to crunch people into them to give maximum stability for active use. Either way I can’t see that it is good for anyone to spend all day in a wheelchair and I can’t help thinking that if the layout of people’s homes was better designed, and in some cases a different manner of care was afforded, then many disabled people could spend more time without
a wheelchair, using their bodies with the abilities they have, changing position regularly and living on the floor without their feet dangling down. My living room is entirely at ground level and designed to best meet my physical needs for relaxation. It certainly isn’t suitable for all my visitors, but it is my private retreat and I’m lucky enough to have a front room as well, with my therapy bench and dining table, that is more inviting to visitors who require a chair to sit on. All too often do people stick with the convention that works for the able bodied rather than exploring the possibilities that cater better for their disability. I believe that the unusual layout of my cottage has improved the quality of my life enormously.

Wheelchairs tend to be all about managing disability, but they can also be fun. Kids tend to enjoy playing in them. Toddlers, barely able to walk, will climb onto them and naturally push the wheels and young teenagers think it’s cool to wheelie in them. I started having fun in a wheelchair before I even left hospital. Salisbury hospital is built on the crest of a hill and there are steep corridors. Some are straight runs that level off at the wards before proceeding down hill to the next level and some are curved and have electric doors that open automatically providing you’re not travelling too fast for them to fail to open in time. Naturally we got ticked off a few times for a group of us with wheelchairs mucking around in the corridors. We had to do our service in the old style, heavy, steel wheelchairs before they would let us try out a lightweight one. The old hospital wheelchairs are big and cumbersome, but we soon learnt to wheelie them and bounce them up curbs. Being let loose in a lightweight sporty wheelchair was like being given a new toy; a cross between a bicycle and a skateboard.

Soon after leaving hospital I went on an adventure holiday in the Lake District. The first day we were taken to climb a hill! They gave us straps to attach to the front of the wheelchair and the buddies with us had to pull us all to the top of the hill. The view over the lakes from the top of the hill was fantastic. To be on a summit in a wild part of Britain was something I never thought I’d do again and was an enormous boost to me in a difficult time of accepting what had happened. The downhill run was even more exhilarating. Some people needed a hand, but I was enjoying my new sense of freedom too much and somehow managed to keep my wheelchair in a wheelie to negotiate the steep rocky path without falling. The art was in controlling the descent; speed was not an option.

However much it is possible to enjoy a wheelchair, the reality soon hit home that this was it, day in day out. I may be able to move around on the floor, but my wheelchair is never far away and is a constant necessity in order to live life. I can’t leave home without it, and unless I crawl on all fours, I can’t move even the shortest distance without it. Every time I get in my car I have to take the chair to bits and haul it in after me. Curbs are a constant obstacle to be negotiated and if they’re too big I’m in danger of jarring my back when bouncing down them. Steps are an insurmountable obstacle, unless, either people carry you, or you bum your way up them dragging your wheelchair with you, something that is not generally very sensible. Rain falls straight on your lap and wet weather means wet hands, even with gloves. If you don’t get stuck in a muddy path then you’re bound to get filthy. It is possible to get to the top of a hill with help, but generally speaking life is confined to the tarmac of civilization. If you wake up to a flat tyre then you can’t leave the house without mending the puncture and the possibility of a puncture any time and anywhere requires logistical planning. The reality of daily wheelchair necessity is not always much fun.

Then there’s the ability to use a wheelchair. The irony is that you don’t get to use a wheelchair until you’ve lost the ability to truly use one. Paraplegics, like myself, are in the top class of wheelchair users (most disabled people have less wheelchair ability than us) and yet using a wheelchair is one of the worst things that a newly injured paraplegic can do. People tend to look at a spinal injury as paralysis through nerve damage, but this is only a small part of the picture. Far more important is the collapse of the bio-mechanical structure of the trunk. The spinal cord is at the very centre of the trunk and the structural quality of the trunk is dependent upon its core. In a spinal injury the tension is flushed out of the spinal cord and the trunk collapses around it. The body of a paraplegic is a collapsed structure. Not only are the legs paralysed through nerve damage, but also the foundation, upon which both the use of the legs and the arms depend, is dramatically depleted. Pushing a wheelchair with no structural integrity to the trunk, and so no foundation upon which to base the use of the arms, causes compression that further depletes the structure and rapidly ingrains the changes. In the early years of my injury, every push of the wheelchair would cause my body to hinge, two thirds of the way down the chest. This crushed the chest in and caused the bottom of the ribcage to splay out. It has taken many years of structural engineering through Advanced Bio-Mechanical Rehabilitation Therapy to rebuild my chest and now only the faintest image of that hinge remains.

The more we rebuild my body through ABR Therapy, the more ability I have to use a wheelchair and yet the less I wish to. I used to trek around a great deal with a wheelchair, walking my dogs, going to the shops, getting to the train station, but these days I do very little of that. I always exercise my dogs using a handcycle, which gives a much better sitting position and better exercise through hand cranking. My body has got so strong that using a wheelchair can now actually input into the system, rather than being the damage limitation exercise that it used to be. I have to make sure that I hold my body well and don’t trudge, but for short distances I enjoy this. Excessive use would not be sensible and there are better ways to input into the system to further build up my body.

There have been times when I detested having to use a wheelchair, but these days I don’t even think about it. It has become such a part of my life, and so normal, that I find it hard to envisage any other way. I still hope to be up on my feet again one day, but if I manage this then I believe the experience of being able bodied, once again, will be even stranger than it has ever been to be a wheelchair user.

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The Rhomboid

December 2, 2014

It’s over thirteen years now since I embarked on my ABR quest (the quest to rebuild my damaged body through Advanced Bio-Mechanical Rehabilitation) under the guidance of its creator Leonid Blyum and its time to reflect upon the progress I have made. Twice a year I travel to Belgium to meet up with Leonid Blyum, at the ABR Centre in Hasselt, to have my progress assessed and to decide upon the next move. The work, however, is done at home; many hours of gentle therapy work each week.

Despite the fact that I live in this body and experience its changes from within, I am not always sure quite what to expect from my assessments every six months. Mr. Blyum always seems pleased with progress and there is always substantial progress, but this does not always tally with my visions and expectations. More often than not, assessments are a stark reminder of just how extensive the damage was, how enormous the task is and how far I still I have to go before I can consider this task anywhere near complete. If I’m not careful they can leave me feeling quite daunted, but they also act as a reality check and a reminder that there are no miracle cures for spinal injury. Considering that it is not possible to do much more damage to your body than I did, all improvements are a godsend and I have continued to make steady improvement over the last thirteen years.

My latest visit to the Belgium Centre, three weeks ago, brought a rather different assessment experience. I was taken by surprise by the substantial transformation in my body. After eighteen years of living within a flat body my trunk has become rhomboid in form! This was a real boost and made me realise how progress is speeding up as momentum builds.

The idea that your body can change without you realising what is happening is quite strange, but this is a case of internal perception not tallying with the structural reality. I always notice changes through improved ability, but can’t always equate that with the structural improvements. These structural improvements often have to be pointed out in my assessment in order for me to make the connection. During the summer I had noticed far greater stability in my trunk giving rise to improved strength in the arms and substantial expansion in the pelvis, but hadn’t made the connection with this fundamental change in the shape of my trunk.

It’s time to reflect upon the progress I have made and just how far I have come since beginning this quest. I have hundreds, if not thousands, of photographs and many videos documenting my progress and will endeavour, in the New Year, to update my website (www.spinalroots.net) to portray my progress through pictures, but for now I will see what I can express with words.

When I embarked upon my ABR Therapy program, my body was as flat as a pancake. Viewed from the side, my chest had little more depth to it than the width of my arm. My back was straight and stiff with no curves to the spine. Rather than being set deep into a spinal valley, my vertebrae protruded and yet the spine effectively floated in my body, playing no part in structural stability. The shoulder blades were nowhere to be seen, lost inside the body and failing to play their part in the stability of the shoulders, but by poking your fingers in from the front, above my collar bone, you could feel the top of the shoulder blade within the body. That is how little substance there was to my body. Similarly you could feel my spine through the front of my abdomen showing how depleted was the quality of the internal organs. It is amazing that digestion could even take place. My trunk lacked the capacity to provide sufficient foundation for the use of the arms and so every push of the wheelchair caused my trunk to hinge in the middle. This hinge occurred two thirds of the way down the chest causing the lower third of the rib cage to splay out. My breathing was shallow and was largely confined to the top two thirds of the chest, the lower third belonging to the abdomen in this respect. My body had collapsed down upon itself and my bottom rib sat below the top of my pelvis. My pelvic girdle had collapsed in on itself and I sat on nothing but skin and bone. When you see the body in this light it’s no wonder that the legs couldn’t work!

After thirteen years, and thousands of hours of therapy work, you now see a very different picture in my body. My spine sits within a valley and has pretty much regained its curvaceous form. It has transformed from that flat, stiff, plant like form, through the primary curve stage of the animal like form to the super curve stage of the human. There is depth to my chest and even my back is finally gaining depth. The shoulder blades have been drawn out of the body to once again anchor the shoulder joints and my trunk gives stability to the use of the arms. The deformation in the ribcage from the hinging of my body is depleting and my chest is slowly regaining its barrel shape. My ribcage and my pelvis are separated by the redevelopment of the waist and my pelvis itself is rapidly regaining volume. My breathing has depth to it and we are currently working on creating the ability of the breath to work right down into the pelvis. The increased pelvic capacity gives a much greater connection of the legs and the improved stability of the trunk provides a greater foundation upon which to base the use of the legs. This has resulted in enormous improvement in the use of the legs, both in the extent to which I can move them and the smooth control of those movements. I can also, once again, take weight through the legs, although it is a little wobbly at this stage to say the least!

All in all I have come a long way in my rehabilitation and have made much progress to celebrate. It is only when I remind myself of the extremely poor condition that my body was in that I remember just how much of a struggle life was and this brings home to me how comfortably I live these days. My body is still substantially lacking in capacity and I still have to work hard to get through each day with some semblance of comfort and ease, but I am growing stronger all the time and look forward to further improvements and to the relaxation that one tends to take for granted when in full health.

For now the real excitement is the establishment of the ‘rhomboid’. We still need to create a back, a front and two sides to arrive at the octagonal form of the healthy body, but finally after all these years I can kiss goodbye to the ‘flat body’!

rhomboid-1

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Letter to BBC Panorama

October 28, 2014

Last week Fergus Walsh, on the BBC’s Panorama program, reported on the work of neuroscientists endeavouring to repair the spinal cord of a paraplegic. The neuroscientist in question believes that the sense of smell is the only part of our nervous system that continually renews itself and that new nerve fibres grow and connect to the olfactory bulbs at the base of the brain. He further believed that if the cells responsible for this were transplanted into a damaged spinal cord then they may bring about the regeneration of that spinal cord. To this end they removed the olfactory bulb from a paraplegic and cultured it in a laboratory to produce the required cells. The cells were then transplanted into his damaged spinal cord.

Below is a letter I sent to Panorama following their program.

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Dear Panorama,

I watched with interest your program, ‘To Walk Again’, about the work of neuroscientists endeavouring to ‘repair the spinal cord’ in a paralysed man. The program followed the progress of a paraplegic who undertook an intensive physiotherapy regime lasting two and a half years. Six months into the regime there were no noticeable improvements and at this point an operation was conducted with a view to ‘repairing the spinal cord’. Three months later, and nine months into the physiotherapy regime, marginal improvements began to be made. After two and a half years of intensive physiotherapy, still only marginal improvements had been made, which would be expected in many paraplegics undertaking such an exercise regime and yet the scientists were claiming the breakthrough that may ‘cure paralysis’.

I have no doubt that Panorama reported honestly the facts of the matter and the opinions of those involved, but the program was also made in such a way as to suggest that the man walked again, which is quite frankly preposterous. All he achieved was the flicker of a muscle that could produce a wobble in his dangling lower leg and many paraplegics achieve far more than this. The exercises appeared to show him moving his legs and yet all these movements, including the cycling, were driven by weights and only initiated by the body; something that could well be achieved through muscular effort above the level of nerve damage. The twisting of the body to produce movement was obvious in some cases. The dramatic shot at the end showing him walking along a gangway, was nothing more than a circus act and a world away from walking. His legs were braced in callipers and he had a frame to support himself with his arms. Motion was activated by using his upper body to swing one leg through at a time. With practice, anyone with complete paralysis from the waist down can accomplish this and so no recovery is necessary. I do not want to diminish the gentleman’s efforts, this, after all, is an achievement in its own right, but is no indication of any advancement made through neuroscience.

What was interesting was the MRI scans showing the spinal cord before and after the operation. The improvement in structure was quite clear and this may have improved the capacity of the spinal cord to re-establish nerve pathways. However, the notion that the spinally injured have their spinal cord severed is misleading. The gentleman in question was stabbed in the spine and his spinal cord was actually cut with a knife. This is rare and the vast majority simply squash, bruise, or pinch their spinal cord. In my case, which was fairly extreme, my body was folded in half, crushed under two ton of dumper truck, and two of my vertebrae were shattered. According to the surgeon who operated to stabilise my spine, my spinal cord was impregnated with shards of bone and yet with the right approach to rehabilitation we are proving that functional improvements can be made, showing that there is the capacity for the re-establishment of nerve pathways even with such a badly damaged spinal cord. I would like to suggest that nerve damage is rarely, if at all, the barrier to overcoming a spinal injury and that the neuroscientists are failing to see the bigger picture.

If we forget for a minute the function of the spinal cord as a communication cable and view the body from a bio-mechanical point of view, then we see the spinal cord as the very centre of our body. Just as a tree has a tubular centre surrounded by annual growth rings, so does a human body have a spinal cord surrounded by many layers of tissue, arriving finally at the outer layer of skin. Damage to the spinal cord, at the core of our body, will inevitably affect every surrounding layer of the body, causing enormous structural depletion. This structural depletion of the body has very little to do with nerve damage, but a great deal to do with the condition of paraplegia (and tetraplegia). Of course the initial paralysis through shock or damage to the spinal cord is a factor in the structural depletion of the body, but so too is the trauma of an accident, the period of bed rest and the following ways of rehabilitation. It is as though, in the immediate trauma of an accident, resulting in spinal injury, the light switch is turned off and all the systems of the body shut down. If we were able to stand up afterwards and shake ourselves off then everything would start up again, but of course we can’t. Instead a period of prolonged bed rest is entered into in which absolute stillness is not only of great importance in order for a damaged spine to begin healing, but largely inevitable due to core damage to the body and paralysis of the lower regions. As a result of this, the body, that was never started up again after the shut down in the immediate trauma, slowly enters into a state of dormancy. I am not thinking here of the skeletal muscles or any connection to nerve damage, but of the core structures of the body, centred around the damaged spinal cord. Consequently, when the paraplegic finally gets out of bed and begins his rehabilitation, the core structure of his body is of too low intrinsic capacity to support walking. With no use of the skeletal muscles from the waist down, due to nerve damage, he has little ability to improve this lack of intrinsic capacity and with such low intrinsic capacity there is no chance of capacity overflowing into the lower regions to stimulate the regeneration of nerve pathways. The body therefore remains in a state of dormancy and this is how the condition of paraplegia is arrived at.

Interestingly, those that are paralysed through disease or spinal operation often go on to walk again as they don’t have that immediate trauma of an accident and so tend to retain intrinsic capacity to the body giving them the capacity to overcome the nerve damage. In your program, the consultant at Oswestry Spinal Injuries Unit was filmed telling a man that, in all probability, he may well walk again. This man had a cyst on his spine that burst, causing paralysis, but he did not have the trauma of an accident.

Having established how the condition of paraplegia is arrived at, which is different from mere paralysis that can be naturally overcome, it must be understood that the brain no longer recognises either those paralysed regions of the body nor the dormant structures above the level of paralysis from nerve damage. Capacity has fallen to too low an ebb for them to register within the brain. Life is maintained in these regions through processes that operate deep in the subconscious, but even this can struggle at times. Once we see that the brain cannot register the existence of the lower paralysed regions, then we can see the futility of attempting to repair the spinal cord. Even if the perfect spinal cord transplant could be conducted then there would still be the same lack of capacity resulting in the lack of registration in the brain. If the brain does not register the existence of muscles then in its eyes there is nothing to send a signal to to operate. Only through improving the capacity of the body can we take steps to overcome paraplegia.

It is true that paraplegia can be defined by nerve damage and that the level of the spine at which the injury occurs defines the extent of the paralysis. People talk of being a T12 paraplegic or a C5 tetraplegic (12th thoracic vertebrae or 5th cervical vertebrae), but when we wish to see the true nature of the injury, and how to overcome the condition, then defining a spinal injury in this way is not helpful. It is far better to define paraplegia as a ‘condition in which the back is missing’. When viewing a paraplegic from the front you may well see what appears as a well formed body, but when viewed from the side it will be obvious that that body has no depth to it. It is as though the entire back third of the body has been sliced off. The volume is simply missing and this is above the level of paralysis from nerve damage. The damage is obviously far more compounded and extends to far more than the missing back, but this ‘missing back’ is truly the defining feature of paraplegia. If there is to be any hope of conquering paraplegia then this structural deficiency must be addressed first and foremost.

I was injured in 1996 and spent seven months in the Spinal Unit at Salisbury District Hospital. When I left hospital I had a slight flicker of a muscle in my right quadriceps and an even fainter flicker in my left quadriceps. After four years I had managed to build upon this to create slight movement at the knees. Basically, if I leaned back in a sitting position and braced my quads I could raise my lower leg slightly. This was as far as I was ever going to get through conscious muscular effort (the conventional physiotherapy approach). It was then that I came across Leonid Blyum and the work that he was doing in Advanced Bio-Mechanical Rehabilitation, focused on serious neurological conditions. He introduced me to a new approach in which we slowly but surely rebuild the damaged structure to the core of the body. By delivering mechanical inputs into the system, by hand and through many hours of repetitive work, we can reawaken the dormant structures and rebuild the missing volume. By addressing the weaknesses in the trunk and bringing the body back into balance we find that the increased capacity of the core structure of the body eventually overflows into the legs. In very simplistic terms, by rebuilding the missing volume of the back we can regain the capacity to support the legs and functional use of the legs begins to return.

For thirteen years I have been pursuing the way of ABR Therapy and have made predictable improvements throughout that time by addressing the structural weaknesses in the system. The progress I have made is truly staggering and although walking is still some way off, I barely resemble the paraplegic I once was. Recently I have begun to stand again, in the true sense of the term supporting my weight through my legs, with hand holds for balance only and this has been achieved eighteen years after injury. What is more, I am making as much if not more progress now than anytime since my injury and there is no reason why I should not continue to improve, to hopefully walk again.

I am glad that you refrained from talking of the work of the neuroscientists as a ‘miracle cure for paralysis’, but unfortunately others in the media are not so restrained and such talk is not helpful. It misleads the general public and gives false hope to the spinally injured. There is no quick fix for a spinal injury and no miracle cures, but there is an approach that can rebuild a body as badly depleted as that of a paraplegic. Perhaps you would like to report on the progress I am making and the work of Leonid Blyum in the field of bio-mechanical rehabilitation.

Yours sincerely,

Steve Collins.

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Barn Building Holiday

September 4, 2014

I haven’t had a holiday for two years and there’s nothing on the horizon, but to be honest I’m happy at home on my smallholding. When you have land and animals there’s not the same desire to ‘get away’. My therapist, however, had two weeks in Crete. Whenever my therapists have had time off I’ve always had the intention of putting in more hours of my own therapy work, and this time was no different, but as always this never seems to happen. I end up going into holiday mode and doing less of my own work than when I have a therapist working on me for three hours a day. Never mind, we all need a break even if I don’t need a holiday.

My therapist’s trip to Crete coincided nicely with the summer’s big project getting into full swing, so I spent two weeks immersed in building the Goose Barn. I’ve kept geese for about twelve years, but they’ve always lived in a sectioned off part of my garden shed or log shed. The goose shed was on the original plans for my garden that I drew up in the year 2000 and the concrete base went down in 2001. The main structural timbers I salvaged in 2002, from some big chicken sheds that were demolished at an old farm down the road, and have had safely stored in my garden ever since, and the concrete blocks that the timber walls sit upon I collected a few years ago from the grounds of a local house that was bequeathed to the charity that owns the cottage I live in. This goose accommodation has been a long time coming and I was only really spurred into getting it built by a friend of mine who wanted to get involved with my goose husbandry and keep a goose to fatten up for Christmas.

By the time my therapist went away, the concrete blocks were laid, detailing the outline of the walls, and the main frames were constructed ready for erection. I had to buy timber for the cross members and cladding, which didn’t come cheap, and this had been delivered, so all was ready to get stuck in. My friend who was involved had to fit building sessions in between his shifts at work which suited me just fine. However strong I am getting, I have to accept my limitations; take things easy when I need to and rest when I need to. We also had an extra hand to help get the main frames in place and braced up and then again to fit the roofing sheets.

Despite my physical disability, I have always enjoyed physical work. I find it invigorating and uplifting, but when you are seriously disabled, as a paraplegic, it is extremely difficult to undertake physical activity in a manner that is conducive to strengthening the body. The danger is always that in struggling to do tasks you build imbalances into the system and further ingrain the changes. It is, however, important to stay active and so a balance must always be struck. Having lived with damaged legs for eight years before breaking my back, I learnt to operate within my limits and this experience served me well when it came to much more serious disability.

Considering the extent of the depletion of my body, physical work in the early years, and there was plenty of it building a home and a life out of a run down cottage, overgrown garden and unkempt field, was little more than a damage limitation exercise. Through my therapy work I have always made sure that my physical condition continues to improve and I couldn’t, and can’t, allow anything to impede this progress. Jobs in the past were not so much uplifting to the body as uplifting to my spirits, and we shouldn’t underestimate the importance of raising your spirits. As the years have gone by I have got stronger, but this is never a straight forward linear progression. There are always problems arising from the exposure of new weaknesses that take time, and sometimes a long time, to strengthen, but this is always a natural process that must be worked through and not a step backwards. Last years project was to rebuild the side wall of my workshop and this came at a time when we exposed a serious weakness in my left shoulder. I struggled and woke up several mornings feeling so stiff that I had to consider whether it was worth completing the job. After all I had achieved, over the years, in building a home, I became more worried than ever that my efforts may impede the progress of my rehabilitation. However, I kept my spirits up, soldiered on and got the job done. I took time to rest and once completed I put extra time and effort into therapy work and no real harm was done. By comparison this year has been very different.

For the first time since becoming a paraplegic, I have regained so much intrinsic capacity to my body that, physical work, if undertaken carefully and thoughtfully, is inputting into the system in a positive manner. Over the two weeks, I was putting in hard working days of physical construction work and yet waking up in the morning and feeling good about the previous days exertions. No aches or stiffness or any tell tale signs that I might have been overdoing it. We had lined up some more geese to join mine in the new accommodation and so I had a deadline to meet which piled on the pressure. I always had siesta, not an English tradition but it has been a good hot summer and I needed a couple of hours rest if I was to last the day, but days were getting longer and one night I didn’t finish until nearly midnight.

The barn building holiday officially came to an end when my therapist returned to work and it was back to therapy in the mornings, but there was still some work left to do and a few more days to meet the deadline. I got it finished in time and now have a good gaggle of geese grazing out in the field. By the end I was very tired and definitely ready to concentrate on putting in the therapy hours once again, but I have to say that never did I feel I pushed myself too far and was very pleased with just how much I could comfortably put myself into physical work. It would be wrong to think that physical work is now the way forward and I must point out that progress can only really be made through continuing my ABR Therapy endeavours. It is, however, good to know that the therapy is paying off and that I’m growing that much stronger.

The goose barn is by far the most impressive structure I have ever built and all it needs now is a rocking chair under the overhanging roof so I can sit out there, whatever the weather, and read my book in the presence of wonderful, graceful creatures. What is more, there’ll be meat for Christmas and plenty of eggs next spring.

Goose Barn left Goose Barn front Storage Geese at home Geese in field

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Head Development

July 1, 2014

There was a time when I considered that our heads were ‘set in stone’, so to speak. I understood that it might be possible to improve your jaw muscle or put on a little weight and fill out in the face, but as for the cranium, the skull that contains the brain, well isn’t that made of bone. Bone being solid matter must be a part of us that grows slowly and then once we reach adulthood is set in shape. It is true that the skull is made of plates, but aren’t the plates joined together. After all, these are true joints unlike what we generally consider joints in the skeleton, the hip, knee, ankle etc., which are not joints at all but separation of bones. So surely the head cannot change in shape or volume.

Then I learnt to view the body in a different way. I learnt that it is not the skeleton that defines our shape and volume but our inner shape and volume that defines the skeleton. Our internal matter, largely the organs, have a density, volume and pressure and collectively our internal tissue is what gives our bodies their form. The curves of the spine are so because they follow the curves of our internal volume. It is the internal matter with its five sections, head, neck, chest, upper and lower abdominal cavities that gives our bodies their curvaceous form and is the bio-mechanical foundation of the structure and function of the body.

As a paraplegic I found my body drastically depleted in its inner volume with a collapsed shape and form. There was such depletion that my body no longer attained to a curvaceous form. The spine had become flat and my body board like. Without the inner volume there was no foundation upon which to base the use of the arms and so the exertions necessary to push a wheelchair caused compression of the depleted inner structure, further depleting that structure and deforming the rib cage around it.

Over the years we have directly addressed this primary inner structure and have enormously improved its volume, shape and form. The curves are back to my body and my spine once again follows those curves. My rib cage has come a long way in returning to the barrel shape it should be. In all this rebuilding of the inner volume and reforming of the skeleton around that volume, there will have been little change, if any, in the bones themselves. Bones are living tissue and will have a certain capacity to adjust over time to altered force lines, but it is much more a case of realignment of the bones due to improvements in the joints, as a consequence of improved inner capacity. So it is easy to see how our bodies and our skeleton can change in shape and form as we improve the bio-mechanics of the body, but it was still a shock to me when dramatic changes in my head began to materialise.

It was eighteen months ago that I first noticed changes in my head and it was a week of very dramatic change. To start with the top of my head expanded, almost opening up, but this seemed to bring the sides in leaving a narrow tall head with flat sides. The cranium then expanded giving me a large rounded head and an internal feeling of expansion, even buoyancy, and then all this was followed by a consolidation phase. It must be appreciated here that we are talking about very small measurements, although it feels like enormous change. If we were to take measurements, with a tape measure, during this process, we may not notice any difference; a millimetre maybe. However, the sensitivity of the hands and the sense of touch is truly staggering and extremely small changes can be perceived. We all know, when reading a book, that if we turn over two pages at once we immediately notice the difference in thickness even with very thin pages. Internal perception is also wondrous and although it is not always obvious what is happening, changes are always perceived.

Development of the head has continued throughout the last eighteen months and although it has never seemed as dramatic as the changes in that first week, it has continued with wave after wave of expansion and consolidation. It is worth bearing in mind here that all this development is the result of hundreds of hours of work on the head alone. I have lost count of how many waves of expansion and consolidation there have been, but it has often been on a weekly basis and this spring it all went crazy with, at times, waves of development happening daily! Through all this change my head has become slowly more ‘beefed up’. My jaw has strengthened and my face filled out. The other day someone looked at a portrait that was painted of me a few years ago and suggested that my face had been depicted too narrow. Considering the skill of the artist, I doubt this was the case and it is more likely that my face has grown considerable broader through all the head development.

The development of the head is of vital importance as we are rooted in our heads. A tree (as all plants are) is rooted in the ground; it is anchored to the earth providing the foundation for its strength. Its root system is also responsible for the absorption of water and nutrients. Above this are the leaves which are the tree’s digestive system and above them are the flowers, the reproductive organs. A human being is the other way up to a tree. We are rooted in our heads which are also responsible for the intake of food and water. Below is our stomach and intestines, our digestive system, and below that is our reproductive organs. An animal, incidentally, is a horizontal creature, a stage between the plant and the human. Just as the tree is anchored to the earth, you could say that we are anchored to the cosmos for our foundation of strength. It is as though we are puppets hung from the crown of our head, but let us stick here to a bio-mechanical understanding. Getting back to our primary core structure consisting of our internal tissues, our lower abdominal cavity is dependent, for its quality, upon our upper abdominal, which in turn is dependent upon our chest, which is dependent upon our neck and finally our head, or more correctly the internal quality of our head. Our skeletal structure is dependent upon our core pneumatic structure and our muscular structure dependent upon our skeletal. A weakness in the head will always be reflected in a weakness further down in the system and so the quality of our head is of vital importance in terms of the bio-mechanics of the human body.

Although the development of the head is a very exciting phase in my rehabilitation, it has not been an easy phase; change never is. Each wave of development comes with an expansion headache in the region between the temples. Occasionally I have to have a real rest day, but I usually manage to carry on with life, however, the headaches tend to make me subdued. All I can do is work through this and so I continue to put many hours of work into my head, which at the moment is done using gentle compression inputs with bare hands. Work is done across the head (essentially between the temples) and from back to front of the head, working on the occipital region at the posterior base of the skull. With a spinal injury, weakness extends into the skull upwards from and following the line of the spine. Much work is needed to expand the occipital region, drawing the occipital bone back out to created a greater anterior posterior depth to the head. I will continue with my endeavour.

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A Fuller Figure

February 15, 2014

It’s no good, I’m going to have to give up and buy some new jeans. I just can’t get them done up round the waist anymore! But whereas most people, with this issue, are becoming resigned to middle aged spread, I’m excited about the wonderful pelvic expansion and increased abdominal volume. I’ve been so scrawny for so long that I’m still wearing 30 inch waist jeans, but that’s all changing now and I’m going to have to furnish myself with a new wardrobe.

Over Christmas my father remarked that I was putting on weight and that, in his view, this wasn’t good and I ought to be careful not to get fat. I tried to explain that it wasn’t a case of ‘getting fat’ and that it was actually an exciting development, but he struggles a little to grasp the concepts behind the structural engineering of the body. Before all the years of pursuing Advanced Bio-Mechanical Rehabilitation and the continuous structural improvements we have produced, I lived with what now seems unimaginable depletion in the quality of my body. I had so little core volume that you could feel my spine through the front of my abdomen and feel the top of my shoulder blade by poking your fingers in above my collar bone. My chest had little more depth to it than the width of my arm and my back was simply missing, leaving a flat spine devoid of its curvaceous form. Over the last thirteen years we have made slow but steady progress in rebuilding the structure of my body, layer upon layer, and although walking still seems like a dream, I don’t resemble the person I was when I began this process and now live with an extremely strong, large, solid body by comparison. Walking is the icing on the cake, but despite this being some way off still, we are continuing to improve my condition after more than seventeen years of living with a spinal injury and are proving that paraplegia is not a permanent condition and that there is hope of recovery.

 When I was standing I was 5 foot 8 inches and my father was a good 6 foot and so he was always a bigger man than I. My father is now 80 years old and by his own admission is shrinking. At the same time I am gaining more stature than ever and for the first time I sat at the dinner table and felt like I towered above him. I also felt that there was a small element of truth in his notion of ‘getting fat’. I seemed to be at a stage where it took effort to hold myself well with the increase of bulk. That stage has now passed and the increase in bulk has consolidated to be an increase in inner quality and rather than taking effort to hold myself it now allows for a greater ability to simply be, without effort.

 This stage that my body has gone through in the last couple of months is only one of many phases of development that has been increasing the bulk of my body over the last thirteen years of therapy work and although I have never been concerned, for one minute, about ‘getting fat’, it has led me to ponder the notion of ‘getting fat’ and ‘putting on weight’ and our perceptions of this. There is definitely a correlation between food on the one hand and the size, weight and shape of our bodies on the other, but this is in no way as simple as the equation the scientists would lead us to believe of, ‘calories in equals calories burnt plus fat stored’. It is true that if you don’t eat you’ll get thin and if you eat excessively you’ll get fat, but then there are plenty of thin people who eat like a horse and plenty of fat people who eat very little in comparison. I have a husky and in autumn she gets fat for winter and in the spring she slims down for summer and yet she eats the same amount of food all year round. Part of this is extra fur, but it is mainly the fleshy layers of skin that are thick and blubbery in the winter. I also keep geese and they look much the same all year round and yet they eat more in the summer than they do in the winter. Geese are grazers and not only is there much more grass in summer, but they desire more supplementary food in summer. Of course a good diet is important, but trying to understand the bulk of our bodies in terms of food alone is unhelpful and misleading. It is far better to gain an understanding from a physiological viewpoint.

 I am certainly no expert in physiology, but through my therapy work I have grasped a great deal of the basic concepts, particularly with regard to the bio-mechanics of the body. However, the understanding I have arrived at that I wish to discuss here, comes more from my own perceptions than from intellectual knowledge. I have noticed that a typical scenario in a stage of increasing bodily bulk, is that it first begins with a fold of skin. That fold is indicative of missing internal volume and is the first stage in attainment to that volume. The fold will then develop a fleshy aspect in a manner that many would consider putting on fat. That fleshiness will then be taken into the body as the true volume develops, leaving the skin taught. So what begins as outer resources in the form of fleshy layers, becomes inner resources in the form of volume. In my case this is a process that is being, not just encouraged, but engineered through successive mechanical inputs delivered into the body and in the case of the able bodied could be induced through conscious physical exercise.

 We then have to consider the quality of these resources and in particular the quality of the inner resources. Our inner resources, or intrinsic capacity, is not just volume, but a volume that has a density and pressure. Once that inner volume has been attained, in me, it tends to be initially of low density, but as the process continues and consolidation occurs, the density will increase while at the same time the new found volume will decrease slightly. The more we build into the system the denser and more solid I become.

 When looking at the able bodied who find they can no longer fit into their jeans and consider themselves to be undergoing middle age spread, we must consider the various scenarios in terms of both inner and outer resources. Is it an increase in inner volume due to a lapse in quality of that inner resource or is it an increase in the fleshy layers of outer resources? It would be possible for someone very fit with a high intrinsic capacity (ie. good quality inner volume) to build up fleshy outer resources, but they would have to over eat in order to do so and someone fit and strong is likely to be too well balanced to do so. Far more common is that people allow the quality of their bodies to lapse. We all tend to be more active when we are younger and as we settle into a comfortable lifestyle we often allow the exercise levels to drop. The body is not then inclined to stay wound up tight. The density of our inner volume declines and the pressure increases the volume. People consider this ‘getting fat’, but it is not getting fat at all, it is a lapse in quality. Once the inner quality has declined and if the exercise levels stay low, then there may well be a build up of outer resources that don’t get taken up into the body. When we look at those considered to be obese, we see that there is almost always substantial structural deficiency. The lifestyle of such people tends to be so poor, with a lack of exercise, lack of fresh air, limited social interaction and an excessive diet of low quality food, that it is impossible for the structural deficiency to be built up naturally. For those who have been this way from a young age it is unlikely that their bodies ever went through the proper processes of development in the first place. These people are in a situation where it is extremely difficult for them to function normally and so inevitably the excessive diet of low quality food results in the piling on of poor quality outer resources that can never be taken up into the body and so the improvements in inner resources, that are so badly needed, are not achieved.

 Finally I would like to consider the part that fashion plays in this. It is the fashion these days to be slim and women especially can take this to extreme. Female models are often scarily lacking in inner resources and yet this lack of quality is considered by many to be beautiful leading others to aspire to a state of being that is fundamentally weak. A strange fashion, but the way of our world nonetheless. This has not always been the case and when we look at the art of Roman times we see that women are normally portrayed with a much fuller figure. Personally I am pleased to be growing in volume and stature and aspire to more and more growth. It is not the volume of our bodies and the fleshiness of them that we should be concerned about, but the dense quality of that volume and flesh that we should seek.

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Normal

December 18, 2013

I’m not sure I’ve ever been normal and we could argue as to whether there is such a thing as a normal human being, but the fact remains that there is nothing normal about serious disability. However, when I became disabled I realised there was this desire amongst disabled people to feel ‘normal’ and I have not been immune to this feeling.

People with spinal injuries deal with their life as a disabled person in many different ways. Some get back to work as soon as they can. I was in hospital with a telephone engineer who broke his back falling from a telegraph pole. He was offered a position in the company, behind a desk, as soon as he was fit enough to work and he left hospital with the intention of pursuing that aim. He was a proud man and the ability to hold down a job to pay the bills would allow him to feel a normal member of society. Not all have the same pride and whilst in hospital a paraplegic came to talk to us about life after injury. His way of dealing with the condition he found himself in was to sit around on benefits and save up for the next holiday. Going on holiday was what made him feel ‘normal’. Others enter into what I have heard referred to as ‘the disabled world’. They spend a substantial amount of their time entering into activities with other disabled people. Some do this as a nothing more than a leisure pursuit, but some take it up as a full time occupation. Sport is a large part of this; anything from bowls to wheelchair racing or rambling to water-skiing, you name it it’s out there.

Three months after leaving hospital as a paraplegic, I went on an adventure holiday in the Lake District with a charity called ‘Back Up’ who organise sporting events for the spinally injured. I had the most fantastic time canoeing, sailing, abseiling, climbing a hill, swimming in a lake and camping out. It didn’t make me feel normal, but it did make me realise that life wasn’t over. I enjoyed being with other disabled people in the same boat as me and I understand why people say this makes them feel normal. It certainly helped me come to terms with my life-changing situation. For a couple of years I pursued organised activities with other paraplegics and although I enjoyed every minute of it, I began, in the end, to feel that I was moving into an alternative social scene that was one step removed from normal life. I had always kept up with my mates and still went rafting down the river with them, camping and cycling, so I really didn’t need to enter into the ‘disabled world’ for leisure pursuits.

The notion of feeling ‘normal’ seems to be about being on a level playing field with those around you and maybe that is not very different to the way all members of society work. After all do we not all tend to mix with people of like minded interests and abilities? Big burly men join the rugby club, retired women the spinners and weavers group. I apologise for the stereotypes, but who we are tends to define the people we mix with and so maybe it is perfectly normal for paraplegics to enter into activities with other paraplegics. However, another problem I had with this approach was that, although there are many disabled people in society, paraplegics with the same interests are actually few and far between and so it is generally a case of travelling some distance to meet up. As someone who has always enjoyed a local social scene this was rather alien to me and I found travelling around on a regular basis to be unrealistic and unhealthy. Maybe if I lived in a big city it would be more realistic.

I also had the problem of how to get the right balance of ‘work, rest and play’. Serious disability inevitably enters complications into the basic elements of day to day life. On one hand the routines of daily living that you once took for granted, getting washed and dressed, getting in and out of a car, become tasks that take longer to perform. On the other hand the need for rest is more important and true rest is harder to find. The nature of physical disability induces far more tension into the structure of the body than any able bodied person lives with and tension that is difficult, if not impossible, to find relief from. What is more, wheelchair use often means being in one position from the time you get up to the time you go to bed. The able bodied person who spends a great deal of their day sitting, walks around for a rest and the person on their feet all day sits down, but the wheelchair user stays sitting regardless. Before I drastically improved my physical condition, I regularly used to long to get home to lie on my front in an attempt to stretch out and find relief from tension. So the paraplegic who returns to full time work may find that his entire week has to be devoted to holding down a job. Similarly, the paraplegic who pursues a sporting hobby may find it impossible to also fit in a job and he who endeavours to properly rest the body may find little time for either work or play. Finding the balance between work, rest and play is therefore not easy, but is it not normal to have all these elements in our life and in the right balance.

After eight years of living with damaged legs and hearing loss before breaking my back, I’d had much experience of seeking this balance and so when I embarked upon life as a paraplegic I instinctively knew what I had to head towards, although getting to the point of really achieving that balance has taken a long time and much fortune in the opportunities that have come my way. I have never concerned myself with seeking paid employment. Not because I couldn’t work but because doing so would not allow me to pursue the way of health that I have always believed is important in order for me to best contribute to society. If I do not put my health first I will only become more of a burden on society and not less. My primary goal has always been to conquer spinal injury by healing my damaged body and even before I understood that this is possible, I never gave up hope and considering the progress I have made, I now, more than ever, believe I will succeed. My efforts in the pursuit of health have become the largest part of my work. Thirteen years ago I teamed up with Leonid Blyum and his way known as Advanced Bio-Mechanical Rehabilitation and I am the research project in which the future for spinal injury rehabilitation lies; a research project into which I put at least a thousand hours a year. However, being a therapy geek is no good. Somehow it is a very introvert way and I have always felt the need to balance that with something more extrovert. I used to fulfil this need through my involvement in the Cheshire Home at which I live in the Lodge, but the Charity no longer seeks to promote such a way and so I now give my voluntary time and effort to wayward teenagers in the Secure Unit for Children at the end of my lane. I like to feel that I contribute to the social fabric of the local community. I also maintain the cottage I live in together with its garden and the field beyond, with sheep and geese as a land management strategy, which is part and parcel of what puts a roof over my head. All I seem to do these days is work, but I enjoy every minute of it and still find time for a reasonable social life. Despite the hours I spend working it is actually quite a restful life and very conducive to health and well-being. I have settled into it well and it is a rather old fashioned way tied to land and animals. A way that is good for the soul. I do drive but rarely have the need to, as I don’t often venture far from home. I seem to have everything I need on my doorstep including a pub down the road and several more in the vicinity. The life I have built for myself seems so ‘normal’ that it actually allows me to forget that I’m disabled.

There have been great strides made over the years to have disability accepted within society and I believe the degree to which disabled people are integrated is a measure of a civilized society. We should never consider a disabled person any less human than anyone else, but at the same time there is nothing normal about disability and there is a danger in thinking of it as so. I once had someone tell me that everyone is disabled, as there are always things that able-bodied people can’t do. I found it quite insulting that he could compare trivialities with the serious nature of spinal injury, but I’m sure he was trying to make me feel good. The danger is that the more we consider disability as normal, the less we appreciate that it is actually an unhealthy condition that we should seek to address and this brings me on to my last point.

The real advances in bringing normality into my life have been in the steps I have made to improve my physical condition. When I left hospital my body was totally paralysed from the waist down and existed as dead weight that I had to carry around with me. Now I have substantial control over my legs and they are much more a part of me. There was a time when I would wake up in exactly the same position as I went to sleep in. The only way to turn over in bed was to sit myself up, lift one leg over the other and manhandle my lower body onto its side. Now I toss and turn in bed like anyone else. I once had so much tension ingrained in my body that I often suffered bouts of striking pains down my leg on my weaker left side, often known as phantom pain, but we have now brought my body into sufficient balance to live without such pain.

The more we rebuild the structure of my body, the more it returns to normality and the more normal I feel. I have no doubt that I will get there. I will stand on my own two feet again, both metaphorically and literally, but I doubt I will ever be ‘normal’!