Spinalroots

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’!