Tag Archives: illness

Meaning and Metaphor: Dispatches from the Front Line of an Illness and Disability

I have to confess to being somewhat neglectful in my blog posting of late. The truth of the matter is that having a close family member with cancer for a while became all consuming, our family has had its normal rhythm disrupted. Several weeks ago I came across an article in The Times about the different metaphors we use to describe illness. These it seemed were most often to do with war. I think for the individual affected by serious illness the war metaphors can become both descriptive and prescriptive, many people have described my mum as tough and a fighter. Both are true of her and in many ways appropriate as she attacks life in general with a type of military precision I have found nowhere else in civilian life. I believe it was Christopher Hitchens objected to this type of description, he felt that cancer was attacking him, not that he was battling the disease. I suppose having a positive mental attitude can improve your quality of life, but I am not sure how much impact it has on the progression of the disease.

Spending a lifetime living in this order and routine I now feel adrift, when cancer a strongly disruptive force unexpectedly landed in my wider family life. The strangest thing was that many things carried on as normal. Cancer is a word that makes you stop and take an involuntary deep breath, the surprise comes when you breath out and and find that all other aspects of life are the same, life it seems still happens. The paperwork generated by my disability, normally so deftly filed by my mother has piled up meaning that my once ascetically pleasing work top has all but become engulfed. For several weeks I felt like I was camping out in my own life, just as when you are on holiday, you get to the hotel, live out of suitcases and experience and do things you would not normally do, so to with the wider family experience of illness.

My life has been ordered and routinised by virtue of the assistance I require in order to live. Every day of my life has its own structure, different activity and mini plan. Cancer has disrupted things on every level. So used to being the subject of medical intervention myself it felt like an odd kind of out of body experience to watch it from another perspective. People are always telling me how much I sound like my mum, now I catch myself thinking she sounds like me. She uses medical lingo like a pro and would rival some of my friends from my special school days, comfortably using terms like PIC line and spiking a temperature. For all my adult life my mum has served me well as a clothing mannequin, while shopping she would try outfits against her body to see if the trousers would be too short as we are the same height. I never thought this role would reverse in the form of the loan of my spare wheelchair and pressure relief cushion, the latter becoming necessary because of a serious reduction in body mass.

We have a deeper and in some way better understanding of each other, perhaps that can only come via a shared experience. I have learned to be less idealistic and judgmental of those who make choices for loved ones based on the information given at the time, and we both know well that medicine can be both miraculous and cruel, tearing to the depths of ones soul on both counts.

Recently I was struck by media reaction to statistics that indicated that over 50 percent of woman and 43 percent of man took a drug that was prescribed to them, most “popular” were pain killers, cholesterol medication and antidepressants. The inference being that we could do without these if we just shaped up and pulled ourselves together. It saddens me greatly that even in the 21st Century it can be inferred that to experience mental ill-heath is a negative lifestyle choice that should be discouraged. Yes such drugs are costly, but like treatments for cancer and heart disease they save many lives and improve the quality of those lives.

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The Rules of this Sociologist’s Method

Last month saw the start of a new school year. All over the country there were transitions occurring, there were children commencing their primary school education, some were moving from primary to secondary school and others from school to college or university.

The last two decades have seen the increasing commodification of the education system. Newspaper articles are now full of comments about parental choice, school league tables and problems related to catchment areas. There have even been stories in the media about parents moving and converting to a particular religion, in order to obtain a place for their children in the school of their choice.

This was a far cry from my family’s experience with me. A few years ago I had an attack of curiosity about my early life, my diagnosis and how it had shaped the person I had become; I ordered a copy of my medical notes from birth to 5 years of age, I have to say that it made very interesting reading. I opened up the folder and discovered what read like an episode of Casualty, and yes, they really do write things like, ‘Crash called.’ I was quite surprised to discover that I had had an entire day with no breathing problems at all and that the crashes only started on my second day of life.

I was resuscitated a scary number of times, to that end I am amazed that I am only this brain damaged. Almost 2 years later I was eventually diagnosed with cerebral palsy, coming after a ridiculous battery of tests, the paediatrican insisted on ruling out other conditions, metabolic in nature. This fascinates me as Theodore Woodward, Professor at the Maryland School of Medicine in the 1940s once said , ‘If you hear hoof-beats, think horses not zebras.’ and cerebral palsy is most definitely the horse associated with premature birth and oxygen starvation.

A little over 12 months after my diagnosis my parents were told that it would be best for me to attend the local special school. There was no particular discussion about any other options and obeying medical advice meant you were perceived as a good parent wanting the best for your child. I have friends whose parents questioned advice, or who didn’t follow it and they were talked to as if they were failing in some way. It seemed aspirations had to be kept realistic. My mum once told me about a conversation she had with my then headmaster, he related a story about a pupil who had expressed a desire to become a professional footballer when he was older. The headmaster thought that to collude in such a dream was to be ultimately cruel. However, I can’t help but think that this was a very black and white view, after all there are many children who express desires to become astronauts, nurses, train drivers, etc and who never ultimately become these. These childhood dreams are a way that we explore possibilities and parts of our personalities. To rob a child of this was I think equally as cruel.

When I became an undergraduate sociologist and began learning about Emile Durkheim, I was struck by his idea of using deviance as a form of social measurement. The use of ‘deviance’ to construct ‘the good parent’ was a prominent feature when I was younger; names of parents who did not conform with medical advice would be “hinted” at in conversations between staff, both teaching and medical. The progress of us children would be compared. I for example had a heel strike, this seemed to be a comparatively rare, but desirable phenomenon, most of my fellows walked up on their toes due to tight hamstrings. I can remember my walking being described as beautiful in this regard. The heel strike was apparently an indicator of my parent’s compliance with my physiotherapy regime.

Actually, I have admiration for my toe walking contemporaries, as for the last three months of my walking life, I became one of them; stiff and sore, every step was truly agonising. A lifelong friend with CP, herself a confirmed toe- walker however, tells me that your feet get acclimatised to an extent when you have done this from a young age. Yes, there is soreness but somehow she keeps going. At the age of 15 she was offered an operation to flatten her feet and turned it down, because in her mind she wasn’t broken and did not need fixing. For me it was different, I was always in pursuit of “normal” it obsessed me in many ways and when my grip on it faltered, I confess to throwing every intervention and drug at my body to make me better, or at to least arrest my decline. This is something that I regret in many ways as I often feel like I have become so defined by what might have been, that everyone seems to have missed what was.

I think a lot about my early life and the way my parents were almost manipulated into making choices for me to retain the good opinion of medical professionals, even if this meant going against their own parental instinct. Physiotherapy was the be all and end all of my early years and mainstream education was off my agenda because of this, despite mum and dad thinking integration was a good idea.

My parents frequently say I could have been a doctor had I not had cerebral palsy. This is due to my ability to recognise certain medical conditions easily and understand the treatment and monitoring of them. My dad commented on this recently, when I was discussing some of mum’s medical tests and cancer treatment, to which I responded, ‘I think I would rather have been a journalist than a doctor, and I am only good at medicine because I have been around it so much.’ Sometimes it is like being in the shadow of a ghost or an older sibling; it can feel like you are spending your entire life trying to emulate or outrun them and put your own mark on the world. One of the big problems I have found is the scarcity of people like me. Growing up I had few role models and nobody I could particularly relate to, the only successful disabled people I remember from my childhood were paralympians, whilst I was a keen rider and swimmer and competed in both arenas I never saw myself as sporty, nor did I want to be like them.

In my last term at school, a physiotherapist asked me what I planned to do when I left school. I responded, “I think I’ll be a writer Miss”. She must have been very sceptical. It is the one dream I clung to through everything. Today I am a writer, journalist and sociologist although, not the foreign correspondent, flying off to troubled regions that I might have been. I have to think that on reflection I am, as the late Christopher Reeve said, still me!