Posts Tagged ‘paraplegic’

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Music & Dance

September 5, 2021

Last weekend I went to Beautiful Days music festival at Escot Park in Devon. Three days of bands, beer tents and camping. For many years such weekends have been a damage limitation exercise. Looking after myself has not always been easy. The lack of home comforts and the demands of roughing it, together with being on the go for twelve hours a day tend to take their toll. This time was different though. Sleeping on a air bed in a tent is never the most comfortable, but I woke up each morning with no aches and pains. We’d head down to the festival around midday and not return to the tent until midnight and yet I never had trouble with a sore bum or aching lower back, nor trouble with my feet swelling up. In fact I’d never felt so alive for a long time.

Switching off from everyday life and letting your hair down is always a good thing to do for a weekend and never more so than after eighteen months without getting away. I lost count of the number of performers who did there ‘ good to be back after lockdown speech’. More importantly, my body is getting so good that I’m better placed for dealing with the rigours of such a weekend and being the first weekend away for a long time this was very noticeable. My whole body has improved, since my last camping trip, from foundation in the head and neck right down to pelvic quality and flow down into the legs. There’s a sense of wholeness to my body that hasn’t existed for too long.

Music is so intrinsic to who we are and there is nothing better than live music and a crowd of people to fill you with spirit. Dance, with its rhythmical movements, has got to be one of the best forms of exercise, although, when paralysed, exercise has to be treated carefully. When I was totally paralysed from the waist down it was good to feel the rhythm in that part of my body I could still use, but difficult to gain the full experience of dance. With so much more connection in my body, dancing can be truly wonderful again. Improved capacity to the pelvis and greatly strengthened lumbar sacral junction means I can move my whole body and I even discovered new strength in the hip joints, bringing the legs into play. One band got the audience swaying from side to side with their hands in the air. I tend to shy away from such antics, but they pulled it off well so I went along with it and was pleasantly surprised by my ability to move from one bum cheek to the other, with real strength of structure and muscular function in the buttocks.

The Levellers, whose cult following I’ve been a member of since the 90’s, put on the festival each year and always headline on the Sunday night. They’re a great band to sing along to and singing is another great exercise which can improve the capacity of the chest through the vibrations of the voice box. Clapping is also a good way of inputting into the structure of the body and it’s fascinating how our social ways can be so good for our health. I spent the weekend singing, dancing, clapping, meeting new people and hugging and kissing the girls; all that has been denied us during the pandemic. Despite the struggles of getting around the site, especially in the mud of a wet Saturday, I was uplifted by the experience of the whole weekend. I left on the Monday morning having grown in stature, and in spirit.

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The Last of the Mohicans

August 19, 2021

Twenty two years ago I stayed in a care home for six weeks following an operation to finally mend my broken collar bone. I can’t say I was really looking forward to the stay and never in my wildest dreams would I have imagined myself enjoying life in a home for disabled people. How wrong I was! I fell in love with the spirit of the place and the philosophy of its founder, Leonard Cheshire. Six months later I moved into the Lodge there; a run down old bungalow in desperate need of some TLC. I’d not just found a community to be a part of, but also an opportunity to put a roof over my head, for a price I could afford, by renovating and maintaining the Lodge and managing land. The combination of the opportunity of a life time and the love and care of an extended family was just what I needed to overcome a life changing accident that had left me a paraplegic. I’m not sure how I would have built a new life for myself without Heatherley Cheshire Home.

The Red Feather symbolises strength and vitality, courage and passion

Two world wars brought out the worst in mankind, but also the best. The camaraderie that Leonard Cheshire experienced led him to seek a new way of coming together in life and, having failed in his first attempt at setting up a communal living project, he set up the most fantastic movement to provide homes for disabled people. Many post war movements sought to capture the spirit of a new age, however, none were strong enough to survive the persisting onslaught of the ‘old order’. The hippies were far too hedonistic and wrapped up in drugs to last the test of time, but even the Leonard Cheshire homes, that were so grounded in a practical way, have fallen prey to an outdated social economic system, together with ever increasing legislation and bureaucracy.

It wasn’t long after joining the community at Heatherley that I realised all was not roses. Head office were starting to take control and the nature of the home was changing from a local community affair to a managed business. In many ways the change was necessary in order for the home to survive, however, you can argue that it hasn’t survived. It has been swallowed up by the old order it sought to replace and the spirit of the new age simply cannot flourish in such a climate. The volunteers are all but gone, friends and relatives are no longer embraced as members of the family and in fact there is no extended family left, no community. All that is left is a business that provides for existence. This is not life and not what those early pioneers began and if it continues we must fear for the future well being of disabled people. It’s not about blaming anyone or being angry, it’s about understanding what has happened so that we may have hope for the future.

The last remnants of spirit remain in the fabric of the place and in those disabled people strong enough to uphold that spirit. I feel like the last of the Mohicans waving the banner of a dying way, a way that I will continue to fight for until it is reborn, and reborn in a way that will last. The ‘old order’ must be defeated and not just in our Cheshire Homes. We must all find a new sense of coming together in community throughout this land and we have those wonderful post war movements of Leonard Cheshire, and others, to show us the way. This is the challenge of our time.

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Paradoxical Shoulder

July 8, 2021

When I moved into my cottage there was a garage / carport / workshop in the backyard. The roof, a heavy boarded felt roof, was held up with 2 x 2 uprights. For those of you not English, or too young to know inches, that’s 50 x 50 mm lengths of wood, incredible flimsy for the job. The whole thing was leaning so I anchored it to the Laurel hedge, winched it upright and braced it up. Years later in 2015 it was time to replace the uprights and build a decent side to my workshop. I laid a footing and a row of blocks, inserted much stronger wooden posts, built in a window and then came the job of cladding. I used 16 foot lengths of 8 inch feather edge, not too heavy until you have to hold them up with one hand to get the first nail in. The following morning my left shoulder was in agony.

Before
….and After

When I broke my back I also broke my collar bone to which the consultant’s answer was that collar bones mend themselves. The two halves were so overlapped that it was only possible for them to join fibrously and the more active I became the more the two halves moved. Two and a half years after breaking my back I finally persuaded a surgeon to bolt the two halves back together, but the damage was done. Having to use a wheelchair with catastrophic collapse of the core structure of your body is bad enough. Top that with a broken collar bone and you end up with serious weakness and deformation of structure. Amazingly, for nearly 20 years my left shoulder rarely troubled me, until I built my workshop wall.

The body has an incredible capacity to compensate and had locked in the weakness using the outer muscular shell to provide the necessary stability for the use of the arms. The shoulder blades, that should play a substantial part in stabilising the arms, were sunk into the body and floated around playing no functional role and yet I could use my arms for strenuous activity, albeit not in a good way. As we slowly but surely improved the structure of my trunk we opened up the collapsed structure and exposed the weaknesses that had been buried for so long. The alignment of the structure was improved but the connections so weak that all of a sudden I had to be so careful as to how I used my upper body. Nailing up the cladding to the workshop wall was too much for the newly exposed weaknesses.

Since then my shoulder has gone through so many stages. We have worked deeper into the body exposing and strengthening level after level, little by little getting to the core of the problem. Strangely, the more we rebuild the structure the more strength I find to lift my weight and move my body around while at the same time small movements can become difficult. At one point I struggled to lift a dinner fork to my mouth. The shoulder blade is so much better anchored these days and we are now exposing weakness in the connection of the humerus, at the ball and socket, and the upper arm. Although stronger than ever sometimes when sitting still my arm will lock at the shoulder joint and I physically have to lift it with the other hand to free it off. The paradox of improving strength on one hand and difficulty with gentle movement on the other is fascinating, but the great thing is I continue to improve and one day my left shoulder will cease to trouble me.

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Workout

April 5, 2021

I went for a walk with a friend the other day in the Nower in Dorking; it’s public woods and grassland. We used to go sledging there as kids so as you can imagine it’s on the side of a hill and not very wheelchair friendly. I enjoyed the walk (or wheel), enjoyed the company and it was great to be trekking around my old stomping ground again. At the end I was exhausted and it was remarked that I’d had a good workout, but was it really good for me?

Gazebo at the top of the Nower

If I did it too often it wouldn’t be good, but now and then does me no physical harm and worth it for the other benefits, although to think of it as a workout would be wrong. In terms of improving my physical condition there is absolutely nothing to be gained by struggling in a wheelchair. To overcome paraplegia you have to be a lot cleverer than that. When my body was terribly depleted, physical exertion was definitely counter productive in terms of ingraining the changes and further deforming the body. In the few years after injury (before the ABR years) I did much damage in taking my body in the wrong direction and much time and effort has been invested since to reverse this. These days I am much stronger, and more capable, while at the same time I am more sensitive and tuned in to the counter productive nature of using my body beyond its limits and I tend to shy away from such activity.

When you live in a body with insufficient structure to support certain functions it is important to improve that underlying structure rather than struggle with function that abuses the already weak structure. The work we do is all about improving the underlying structure through external mechanical inputs, building it up to the point where function becomes possible. Only then, once the functional ability is achieved, does a workout become sensible. Such an approach should not only be adopted by the severely disabled, but also by the significant number of able bodied people who find themselves out of shape.

We get many joggers down our lane. The occasional one is in good shape and it’s a joy to see a body so capable of effortlessly moving at speed, although for most it is painful to watch their misguided attempts to improve their fitness. The other day there was a women with a distinct weakness at the lumbar sacral junction. Instead of a strong trunk supporting the pelvis and allowing true articulation at the hip joints, the hips were rigid and the body twisted at the waist with every step. The inputs into the body, from the reaction of each step against the ground, could ascend no further than that weakness and could only build up bulk around the already immobile hips. I see many joggers with hunched up shoulders, and head sunk down into the body, locking up the weakness in the neck and shoulder girdle in order to gain the stability to support the lower trunk and legs. Again no inputs can work up into the weakness, it’s too locked up.

One day I’ll teach people how to strengthen their structural weaknesses and get in shape to the point that they’re then in a position to jog with ease and have the capacity to build up their fitness.

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Years of Practice

October 14, 2020

Before I broke my back and became disabled ‘for real’ I had a previous accident. At the age of twenty I was knocked off a bicycle, left unconscious in the road and then run over by a car. It nearly tore my right foot off, damaged my left knee and my head and body went underneath the car with what must have been the sump hitting me in the side of the head. That’s three quarters of a ton of metal travelling at speed! The driver never stopped.

Being young, and thinking I was invincible, I soldiered on and threw myself back into life thinking it wouldn’t bother me. For two years I did well, at least well in terms of keeping my spirits up. Physically I tended to overdo things and my ankle, especially, would swell up at times and lock solid. I got back to college after only a term off and the following summer I moved to Wales to work for a year as part of the course I was doing. I had a fantastic year, although coming back to London after the wilds of Wales was a little depressing and physically I was starting to struggle. The reality of living with injury was starting to press home.

I finished the year at college and obtained my degree, but it was tough and I had little desire left to get a job in engineering product design that I was trained for. Manufacturing industry had come to symbolise all that I despised about our industrial civilization. Maybe I should thank the accident for ensuring that I don’t now go to work in a suit and tie and have never become another pawn in the machine. As it was I returned to Dorking, my home town, exhausted both physically and mentally. There was work to do to overcome what had happened to me three years previously.

I never lost my thirst for life and my twenties were good years. Motorcycling with a dog that rode pillion, camping, rafting down rivers and a great deal of partying. They were, however, tough years mentally. If I had spoken to a doctor I would easily have been diagnosed with depression. I drunk a lot and rarely went a day without being stoned. My twenty fifth birthday was one of the lowest days of my life. I arrived at a friends house for dinner, late and a little drunk and I remember saying to him that surviving quarter of a century deserved a month off, and that’s how I felt. It was also a turning point.

I didn’t have the month off. I got back to physio, joined a yoga class, took to walking barefoot and dramatically improved my physical condition. I restored an old lorry, had a go at running a business with it and really began to get my head round life. Three years later, though, I sold my lorry and was labouring to try and pay my way having no real idea where life was going and then fate decided for me. I had an accident with a dumper truck, got crushed underneath it and broke my back.

While I was lying in hospital paralysed from the waist down a friend came to see me and said, “That first accident was just preparing you for this one”. In many ways she was right.