Archive for December, 2014

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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’!

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