Anatomy of Agony

I have finally come out the other end of a period of chronic pain. Spending three weeks coping with a level of pain that meant sleep was impossible, driving would have been very inadvisable and even dressing became too difficult to consider has dramatic effects on both your physical and mental well being. Everyone who suffers from chronic pain has the same experience of this debilitating problem.

Now I have a usual level of pain, caused by a spinal injury, a dislocated right hip, trapped nerves and aging shoulders (one of the joys of using a wheelchair, your shoulders do much more work than they were meant to and so age more quickly). I am used to dealing with this, and have found ways of doing so. Yes, it can be annoying and can mean that I find myself less focused or easily annoyed on a day when the pain is a little more than usual. However, every now and then events conspire to create a massive spike in my pain levels, and then things really do go off the rails.

This time I fractured my ankle, tore a muscle in my back and thus caused a set of trapped nerves to become inflamed. This led to my sensation below my waist to become “hyper-sensitive”. Hyper-sensitivity is where all normal feelings and sensations are increased to an almost unbearable level. When it happens I find wearing socks and trousers an agony, so you can imagine what might happen when it combines with a fractured ankle. Stupidly I did all this when trying to find out if I might be able to go back into club DJ-ing. Proof that however much this government might be trying to get disabled people back to work, until the built environment is fully inclusive this ambition is going to be one hell of a struggle. Whatever this event meant politically, personally it was a period of hell.

It started as a niggle in my right ankle and within two hours had grown to a level of pain that had me screaming the house down. My poor neighbours, they must have thought someone was murdering me. It felt they were to me. Pain is strange. When it takes hold it almost has a physical presence. I know when I had broken my back for the second time in 1999, as my spine collapsed the pain took on a physical element. As the nerves to my toes where being crushed I was kept awake by what felt like rats gnawing at my feet. Of course I didn’t have rodents eating me, but what was happening was the brain read the different nerve impulses and tried to make sense of them. But not only do situations like this happen, but pain itself feels like a entity has taken hold of your body. Especially terrifying as I could not feel my feet at this time. I know have full feeling below my waist, but at times of extreme pain this is not a boon. Oh no.

I will admit I have a strange relationship with my body. It has been the cause of many problems in my life, and so I do tend to feel that “I” live in my body and we are at constant battle. It’s how I have overcome many illnesses and debilitating physical problems. I battle them and my body equally. It never wins. When this hyper-pain strikes it isn’t my body that is fighting me yet again, it feels like something else. Like an dark entity takes over and it is trying to break me using pain as a weapon.

All this might sound like it is taking on a spiritual element but it is more that the way the brain struggles to cope with situations like this are what has led to our need to find supernatural reasons and causes. I know there isn’t an evil spirit taking over my body, and that it is a purely physical function of pain, it does feel like you are battling something “other”. I am sure that this is something that evolved to enable us to fight back, by battling against this entity instead of our own bodies. And it is a battle. Many times in the last weeks I have found myself unable to continue. Yet continue I must, and did. I also won. I always have. I always will.

During the moments where I feel the battle is too much to continue, I have an insight into those people who want euthanasia. Yet I know in my heart I will prevail, and so it saddens me. During the huge internal battle against this pain monster, I regularly am struck with tragedy of those who want to die, and especially those who do. I know how easy it would be to bow out, and what a relief it would be too. But there is no way I will go without a fight. Once the battle is over I know I was right.

I don’t know why I felt I should write this blog. I just wanted to put out into the ether my thoughts on pain and how it effects you. Everyone I have spoken to who suffers from chronic pain has a similar experience of it. Those who have continuous chronic pain seem to cope better on a day to day basis, thanks to finding mechanisms of treating the pain via various ways, but they do find that the pain gets to them eventually, whether it is physically or mentally. I know I am lucky. I have these periods ever six months to a year, and while they are terrifying while they last, once they are over I can go back to my usual pain and my usual life. Yes even my usual pain does effect the way I live, but it doesn’t stop me dead.

All of us that has pain as part of their disability knows how little that is considered by the greater public. No one looks at someone like me and even thinks of pain. In fact feeling isn’t normally something people associate with paraplegia! Many conditions that are hidden disabilities have pain within them. One day I hope that the public, and especially the government, understand how pain effects ones life and might even start to find ways of helping us fight the spectre of pain.

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A visit to Cambridge – what a difference a day makes.

This week my wife Diane and I spent a day in Cambridge. We went there to have a look round as it is one of the places Diane would like to study for her doctorate in Physics. It is a lovely city and we had a great time wondering round it’s historic streets and strolling through it’s colleges. One of the high points for me was the Fitzwilliam Museum. It’s funny, that while it is a smaller museum than many of the ones we visit here in London, the quality of it’s exhibits are superb. The Egyptian rooms were especially great, filled with wonderful artefacts that gave a real insight into what life was like back then.

While we were walking around the pottery and ceramics rooms we met a friendly and charming guide called Sam. We started talking and he gave us a real insight into what studying at Cambridge would be like. He had studied there for his degree into Philosophy, and he was about to go to Durham to do his masters. Funnily Diane had just come back from studying up there and so the conversation deepened. At some point Sam asked me what I did, more out of courtesy I think as I had obviously less to say in this conversation of academics – being the “blonde” in my relationship – and so I gave him a potted history of Mik. Of course he had never seen me on TV, but then I guess that at no point in his studies did he feel the need to combine Philosophy with kids TV or disability magazine shows. However when I started talking about my writing we found that his Philosophy studies and the subjects I wrote about crossed over.

Eventually we got to the big Philosophical subject of the minute for disabled people, assisted suicide, euthanasia and mercy killing. We chatted about what society seemed to think, what I felt and what Sam’s studies and beliefs had led him to believe about the issue. He was very anti-abortion, and while both Diane and myself are pro-choice, we soon reached an agreement that the problem with this issue of terminating life was lack of information. Sam thought that abortion was like destroying beautiful objects, like the ones we were surrounded with. While the status of a foetus could be open to debate, it was still something to be cherished, and so should not be destroyed. We felt that while this was correct, the person carrying the foetus should have the choice. I brought up the problem of aborting disabled foetuses, and how I believed that this was wrong, and realised that I might be arguing for both camps. This made me see that maybe my stand point might be wrong, and that I needed to re-examine where I stood on abortion. I hope that our discussion made Sam revalue his more pro stand on euthanasia too.

The main thing to come out of this exchange was the realisation that disability and it’s ramifications are not part of academic study. While there is the subject of disability studies, and it is included in some other subjects, there isn’t enough literature on the topic to ensure that any discussion around disability can be carried out from a position of knowledge. I know from my own experience that some subjects are still teaching theories about disability that are years out of date.

Up until earlier this year I was taking a Psychology degree, but when we got to the area of the psychology of identity I found I had a problem. The way identity was explored was using the identity of disability. Ha, I thought, this will be an easy module. As I began studying however, I found that the only model of disability being used was the medical one. Time and time again, disabled people were described and described themselves via their medical conditions. While I understood how a subject like Psychology would have an interest in the medical aspects of disability, I could not see why the social model and how society makes our physical differences disable us was totally excluded. Surely when exploring the psychology of identity the two models were of massive importance, especially as they have changed how disabled people see themselves, which is pretty much what identity is. When I raised this issue with my tutor, well lets just say I am no longer of uni.

But of course, if there are a small number of publications that explore disability at an academic level, how can academia start to understand how disability colours so many areas of study? Not just the obvious but everything. So many historic figures had disabilities, yet we hear little about that. Julius Caesar was an epileptic, and his desire to hide this from the Roman people led him to form close bonds with all who worked for him. Hence why he treated them so well, and why they felt such a bond with him. This was one of the reasons why he rose to be the leader of the Roman Empire – and he is just one figure of many. (Any TV producers out there, I have a TV show I have researched on this subject that would be a fantastic show). How has disability influenced the world and how we are?

With this question in mind I am planning to research and write a book exploring disability and it’s many facets. I want to cover the many issues surrounding disability and gather views and experiences of disabled people through out the country and of all ages. I want to create a reference point that can be used by everyone to explore how disability effects the world we live in, and how it effects us. So if there is anyone out there who would be prepared to be interviewed by me could you please contact me via my website? The book is in the planning stages but if you feel you would like to contribute, please just drop me a line and we can take it from there.

www.mikscarlet.co.uk

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Here we go again… or watch out for the slippery slope.

Yesterday’s ITV national news at 6.30pm ran the story of Tony Nicklingson, who, after having a stroke, suffers from “locked in syndrome”. This means while is mentally he is fully functioning, physically he is only able to move his eyes and head. He cannot speak but communicates via a spelling board. The story revolved around the fact that he is going to court to try to get the law changed on mercy killing. Not assisted suicide as he is too disabled to be able to do anything himself, and so can play almost no part in his suicide. This would make helping him to die a mercy killing, which would be murder as the law now stands.

The presenter and the item reporter talked about how Tony had been a keen rugby player and the life and sole of the party but now could do none of those things, their voices trembling with emotion. His wife read out a statement that Mr Nicklingson had written with her using his spelling board. In it he told how he was “fed up with his life” and how he was not thankful to the doctor who saved his life.

Now at this point in the blog I originally went off on a vitriolic rant but have decided to try be more measured, both to make sure I get my point across and to avoid legal action. However if moments of anger do creep into what I write, please forgive me as this is a subject very close to my heart.

Every time I see one of these people campaigning to be killed, whether it be assisted suicide or mercy killing, I am stunned. Stunned and then filed with rage. Are they so selfish that they cannot see the bigger picture? Do they care so little for anyone else, or know so little of history that they can only see their own discomfort? Of course people like Mr Nicklingson have been handed a crappy hand in life, and I totally understand how depressed he must get. But there is a much more at stake than one person’s life when we start to go down this road. Once we do say it is OK to allow mercy killing then the slippery slope will lead to a world that snuffs out anyone who is serious ill or disabled.

Neither my wife, who was seriously burnt at the age of 6 months, or I, who had cancer at birth would still be here. In fact my wife’s father, who has epilepsy would have been put down after his first fit when he was a young boy, so she would even have existed. Or would her two sisters, or their sons. So already, that’s seven people taken out of existance. OK that’s a bit dramatic, but this is the result when you start making decisions around life and death on something as intangible as quality of life. What is a good quality? How do you decide? Will it come down to a list of conditions that we as a society see as just being too much to bear? But who says what is a terrible illness or disability?

Once we have eradicated everyone with these serious conditions, surely won’t people with lesser problems, things like dyslexia, poor vision, weight problems and maybe even the elderly, start being considered to live lives with no quality? Once you start, the goal posts will keep changing as society starts to see any condition as being unbearable. Another outcome would be the gradual change in medicine. No longer would doctors and surgeons strive to cure disease. Instead they would just kill their patients, as an act of mercy. Slowly all research would cease and eventually all illness would be seen as something that merits death.

But whatever your beliefs on this issue, the way it is reported on TV is disgusting. No balance, no examination of the subject. Instead we see an editorialised piece filled with words and phrases like “tragic”, “suffering”, “die with dignity” and “right to choose”. Tonight’s item on Tony Nicklingson was given the leader line “Trapped inside his own body”. Well aren’t we all trapped inside our own bodies. That describes being human, surely? There was no exploration of his condition, and if there are ways of allowing him to live with his disability independently and with dignity. Let’s not forget that Mr Nicklingson has a similar level of disability as Stephen Hawking, a man who has changed the way we see our world and who has written loads of books while being “trapped inside his own body”.

Instead of focusing on how this man wants to die, which is common when people are at the early stages of a new disability, the news should really have explored why this man has not been given the services and support that he and his family obviously need. It also should have looked deeper into the history of mercy killing, the truth behind what it means and why some people believe it is something we should avoid at all costs. At the least it should have been a measured piece and not shock news that played on people’s fears of illness and disability.

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