Spinalroots

I live in a little old square cottage. I reserve the front door for able bodied visitors and enter myself through the back door which goes into a porch between the kitchen and bathroom extension. The kitchen, bathroom, back yard and garden beyond is the first kingdom; the ‘Kingdom of Occupational Therapy’. Here I practise everything I learnt from that first accident that injured my legs; how to live well with a damaged body. Luckily the layout of the bathroom was perfectly suited to my wheelchair use, but the kitchen I have designed to best suit my needs. The garden I created, appropriately, from a wilderness and the field beyond I fenced in a way that enables me to manage it with sheep.

It is so important that all of us (regardless of physical condition) organize our lives to ensure that our occupation is therapeutic. Far too many people live lives that slowly grind them down. However, if you wish to heal a body that is as severely damaged as mine, then it is absolutely vital that your occupation is therapeutic. Every activity of daily living must encourage physical and mental well being. Much of this is a matter of simple alterations from the norm, lowering worktops in the kitchen and making sure there is space underneath to accommodate your knees, but without such alterations coping would be difficult and life would become too demanding upon physical reserves. The other side is about engineering life, be it work or hobbies, to provide for your spiritual well being. With me this is about land and animals; dogs, sheep and geese.

The kitchen is as far as I go in a wheelchair. Across the doorway is a bench which I clamber onto to enter into the front room. This is my therapy room and ‘Leonid’s Kingdom’. Leonid Blyum is my consultant and teacher of the therapy that is healing my body and here I follow, strictly, his exercise regime. Most of this involves five, three hour long, sessions a week in which my therapists, whom Leonid has taught, work upon my body. There are also active exercises that I do myself, but whether I am worked upon or active myself, I do as I am told in this kingdom.

From my therapy room I climb off the end of the bench into my living room in the other front corner of the cottage. This is my television room and I live on the floor in this room, with plenty of good cushions! For years, Leonid’s influence dominated in this room also, but I am pleased to say that I have finally conquered this quadrant and made it ‘My Own Kingdom’. It is, however, very much still a therapy room where I conduct exercises most evenings in front of the television, but they are exercises that are now driven by my own techniques. These are, of course, based upon ABR principals and all that I have learnt from ten years of Leonid’s tutorship.

Recently we have brought my pelvis back to life and created connection between the elements of the trunk, from the top of the head to pelvic floor. The connection is still very weak and there is much more work to do before this can translate into productive use of the legs, but it has created far greater stability to the trunk which enables me to use it in ways that can generate a mechanical input into the system. Without going into too much technical detail it involves the creation of quasi static movement by working against the air in soft therapy balls, oscillating between action and reaction to impart rhythmical stresses within the structural framework of the body and so working that structure to improve its strength and quality. To start with all ABR exercises were passive, being mostly delivered by a helper, and even those I could conduct upon myself were a case of using conscious effort at the hand to deliver an input into a passive part of the body. The active exercises that Leonid then introduced are far more physical (generally working in kneeling and creating a kind of bouncing motion upon an air cushion to deliver an input into the knees and up higher into the system) and impart a greater feeling for the way in which the input works into the body, but there is still that distinction between creation and absorption of input. The self exercises that I am now working at are almost as though the creation of the movement is the input. It is about connecting the body to the element of air so that the oscillating movements created by working against the air in the therapy balls are almost devoid of muscular action. I find these exercises have a meditative element to them and help in creating a higher conscious awareness of the structure of the body. They also help me wind down at the end of the day and prepare myself for sleep, but please be clear that we are essentially dealing with a mechanical input into the body.

From my television room I crawl into my bedroom at the back of the cottage and climb into bed. There is a saying that goes, ‘my body is a temple’, and it tends to be very misunderstood. People seem to think that it is about what you put into your body; treating it to only the purest of foods and avoiding any stimulants, but it actually has nothing to do with how you look after your body. When we sleep we leave our physical bodies and then return again to them upon waking to find them still living. Whatever you think of this statement, this is the origin of the saying. Our bodies are a temple because they belong to the Gods. The Gods look after them while we are asleep. For this reason I consider my bedroom to be ‘Gods’ Kingdom’. Don’t think, though, that the therapeutic nature of this kingdom is purely about sleep. Leonid invented a machine to deliver ABR therapy which can be used at night. I sometimes wish he had never invented it but since he has I feel that I would be cheating myself if I did not make use of it. Through the inflation and deflation of air bladders, strapped to the body in conjunction with foam air cushions, it delivers a mechanical input in much the same way as we do by hand. I use it on my knees and ankles to slowly improve their quality. I’m sure the Gods won’t mind me delivering therapy to my body while I’m elsewhere in sleep.

Three years to the day after breaking my back I moved into the Lodge at Heatherley Cheshire Home. Two years in limbo living in Brockham had allowed me to take stock, understand my abilities and think of where I could go in life. Now it was time to start building a life. I moved here for three reasons. For the community (or family) that stems from our founder, Leonard Cheshire, for the opportunity that the land provided and to live for a token level of rent in return for what I did around the Cheshire Home.

Funnily enough it was not so much a new life as a rejuvenation of the old life. I’d spent my twenties striving to find a better way of living and a meaningful way of employment, but never managed to escape the rat race. The extortionate cost of putting a roof over your head tends to lead us all to abandon our ideals and enter into long hours of employment just to enjoy the comforts that civilization brings. After years of endeavouring to avoid this trap I had all but resigned myself to doing just that, hence the work that I was doing that led to an accident in which I became a paraplegic.

It’s sad that I had to become paralysed to embark upon the life I’d dreamed of, but this is exactly what happened. I’d struck up a deal with the Cheshire Home. I suggested that I could get the woodwork shop going again, keep some animals around the place and do some gardening with the residents, in recognition of which, I got to live in the Lodge, not quite for free, but not far off. The opportunity to put my skills to good use, to help others, gave purpose to my life once more and the potential for a country cottage and smallholding was a dream come true!

My mother described the Lodge as ‘virtually derelict and unfit for human habitation’, but she wasn’t worried about me, she knew I’d survive and knew I was in my element. She wasn’t far wrong though. It hadn’t been touched much since the sixties, when a bathroom extension had been built, and it was badly in need of renovation. Looking back it amazes me how the charity ever allowed me to move in. These days the Cheshire Home comes much more under the central control of the charity and ‘health and safety’ would ensure that I didn’t have the opportunity; so I got my foot in the door just in time.

To start with it was tough. All my effort had to be put into making the cottage work for me and to stop it falling to bits any more than it already was. I didn’t dare ask the charity for help for fear of them wanting to charge more rent. However, as soon as the basis of a sustainable way of living in the cottage was established, I set to work on projects around the Cheshire Home. There was a ramshackle old shed that had been used in the past for woodwork and I soon sorted it out and embarked upon making things with a few of the residents. The greenhouse wasn’t being looked after so I tidied it up and started growing some vegetables. A girl that lived here wanted a pet ferret and, as I’d often fancied keeping ferrets myself, I agreed to go in on it with her. I built a two storey hutch and bought two young ferrets for it. Tracy loved it.

My garden at the Lodge was another big project. When I moved in the first half of the garden was three foot high grass. The back of the garden was an impenetrable mass of brambles and it wasn’t until I started to clear them that I realised they were hiding a huge rat infested rubbish tip. The old maintenance man had lived here for years and all the rubbish, building materials, car parts, you name it, it was there, he had simply thrown at the back of the garden. This one I needed help with, so I got some mates in with a mini digger to clear the whole garden, dig in the tracks for paths and start me with a clean slate.

Life went on in this fashion for a couple of years, but it wasn’t all going how I’d hoped. The majority of residents are very seriously disabled and it was proving difficult to involve them in activities. Despite completing some major building jobs to the Lodge, rescuing the porch from collapse and putting a beam in the kitchen to take out one side of the chimney breast etc, there was still so much to do and the project was daunting. On top of this, not only did the new manager lack the will to support me in my endeavours, but she denied that any arrangement had ever been made. As far as she was concerned I only paid a low level of rent for the Lodge because it was in need of renovation. And so began a long drawn out battle with management. At one point the regional director wanted me to move out so they could spend £25,000 on building work before charging a commercial level of rent! I refused, and finally, with the intervention of our trustee, I won and we did things my way.

Twelve years after moving here I’m glad to say the life I dreamed of has been built. There is still work to do to the cottage and garden, but it adequately provides for my needs. The smallholding is up and running with Soay sheep in the field out the back and geese keeping the grass down in other areas. I had to abandon organized activities with the residents, but there are those I look out for and help on a personal level and I manage the orchid meadow and its flower bed for the pleasure of all. My work these days is ABR therapy, primarily for my own rehabilitation, but also as important research and development work for the future of the spinally injured and health in general (hence the website and blog to make this work known). In terms of my rehabilitation, the importance of building a life cannot be underestimated. With such a long term approach to rehabilitation, I think I would go insane if my life was about nothing more than my physical health. The way of life I have developed compliments my physical rehabilitation so that I may grow in body and spirit.

Finally I have recently embarked upon a new venture. At the end of my lane is a secure unit for children. They’re not criminals, but are locked up for there own safety so that they may put their lives back on track. I was approached and asked if I would keep some animals in the grounds, in order to show the kids another side of life, and so this year I’m building a compound there to house a few sheep. This, essentially, is everything I was trying to achieve at the Cheshire Home, but it didn’t work with disabled people. Let’s hope it works with kids.