Monthly Archives: October 2014

Only When I Laugh

A few weeks ago I was reading The Times Newspaper’s ‘Spinal Column’, a regular feature written by the columnist Melanie Reid who became quadriplegic a few years ago following a horse riding accident. Her column has provided a much needed window into the disability experience. It is raw at times; written in the moment. Melanie shares with we readers the ups, downs, farcity and at times utter hilarity of life with disability.

I was surprised and saddened when she related that some readers thought she was making light of the problems people with disabilities face. Personally I have always been a great believer in the power of laughter. The ability to laugh at myself has been a saving grace in the last ten years, it has helped me to deal with unimaginable loss. It has saved me from becoming a moaner, I can discuss my problems and not feel weighed down by them. People think I am eccentric when, for example, I say that I have become convinced that my garden shed has a contract out on my life as bits of its construction seem to keep wedging themselves under my wheels at the most inconvenient times.

For me, humour is a way of deflecting my mind from my personal vulnerability, the precarious nature of the limited independence I have. The last few months have given me precious little to laugh about apart from 2 things: our family have now developed a communal sock fund; men see wardrobes very differently to women.

First the communal sock fund, because I have very swollen feet I have to wear men’s size 8 to 10 socks. This is, coincidentally, the same size worn by my dad. He has now taken over laundry duty with the result that recently we discovered we were in fact wearing each other’s socks, as they had somehow got swapped in the process of him doing the laundry at his house and returning it to me.

Secondly, men and wardrobes. My dad has developed a hatred for plastic coat hangers, as he says there are too many of them in my wardrobe and they take up too much space. He also struggles to tell the difference between nighties and dresses, pyjamas and leggings. This makes it really interesting when I come to get dressed each morning and reach into my wardrobe. He did help me the other day when I tried 3 times to fasten a shirt up, got frustrated as I was always left with a button at the bottom and he explained that it was the spare button.

If we both stopped to think about why these things were actually happening we would probably end up in the deepest of depression. However, the ability to laugh in the face of adversity has, to this point, saved us from that.

This week I came across a quote by Robert Kennedy that summed up how I feel about dealing with sadness and adversity, “Tragedy is a tool for the living to gain wisdom, not a guide by which to live.”

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Too Much of a Bad Thing

One Sunday night about 18 months ago there was a knock at my door, I opened it to be greeted by a smartly dressed young man. He proffered his badge and informed me he was working to collect donations for a cancer charity. He gave me a statistic that one in three people will be affected by cancer during their lifetime and went on to ask if I would like to donate money regularly to fund research into cancer and its treatments. I responded that I would give money regularly to cancer charities when neurological disability such as cerebral palsy got the same level of publicity and financial backing.

I have to confess, it had been a bad day. I was coming to the end of my battle with Social Services to obtain support to enhance my quality of life, give me a purpose and help me achieve some life goals. Whatever I did, I felt like I was falling through the cracks. I felt very vulnerable with only family members and a bit of private support I was able to fund with my Disability Living Allowance. It exasperated me that people grasped the need to provide good support services and treatment for cancer but seemed to be blind to my situation.

However, three months ago now my political stance regarding cancer charities came back to haunt me in the very worst possible way. My mum, who had been ill for some months, was finally diagnosed with a rare form of cancer. You see the adverts on TV of people falling backwards having been hit by the tsunami of their diagnosis, that’s exactly what it was like. Cancer has always been in the background, like the mist and fog which comes with the onset of winter. The women in my family carry the predisposition to develop breast cancer, lumps, bumps and breast changes all of which were openly discussed. I was almost blasé, when my mum told me that a breast biopsy had revealed a high risk of malignancy and she had decided to undergo a mastectomy.

I have to say mum sailed through the whole thing; applying the same logic and fortitude to her recovery as in the past she had to my physiotherapy, that good old ‘no pain no gain’ ethos. Within a month she was back to helping me with physical tasks and even lifting my wheelchair in and out of the boot of the car, not medically recommended. I have to confess to breathing a sigh of relief as the risk, in my eyes, was gone and the panic was over.

Two things are interesting about the current situation: one, the cancer was a type that was entirely unexpected and two, the diagnosis has led to some odd conversations with my mum. For example, immediately after announcing that she had cancer she told me not to worry as my dad would be able to epilate my legs. This was the first of my personal care issues that she reassured me that dad was going to learn to support me with. I find it fascinating that of all the things she could worry about, leg hair was a priority.

I have now found myself judging mum’s health and wellbeing by whether or not she comments on my posture. Historically she has been like a human spirit level when it comes to how I sit and stand, whether my clothes are on straight and if my trousers need pulling up. When she has been really poorly, this level of awareness disappeared and I thought I would find it restful, but found that I do not. I have resolved never to internally whinge about this ever again.

Similarly, now dad has taken over many of the household chores he has begun to apply his engineering training and logic to various scenarios. He has a complex spreadsheet to help him organise the weekly food shopping, column headings are: item; need it; got it. Despite this he managed to forget the milk recently as they fell off the end of his sheet. Interestingly, mum has noticed that the food bill has inexplicably gone up.

Mum has developed more of an understanding of the necessity for television, the lack of which created a 2 day stand off when she was allocated the 1 bed in hospital where the TV did not work. She had been in there for 7 weeks and felt isolated from the outside world. It proved to me that the little things really do matter.

Once someone close to you has this diagnosis, you feel that it is everywhere. Dad and I went to the canteen at the hospital and the lady at the till asked if she could interest us in a cancer awareness badge, I told dad that I thought we were aware enough of cancer without the need for a physical reminder.

Dad’s car previously used to be an engineer’s mobile office and now routinely carries 2 wheelchairs. It has begun to resemble a patient transport ambulance. Dad is now becoming as conversant with the lingo of hospital as mum and me and has to work out what to do when both mum and I have a hospital simultaneously, which has happened more than once.

Dads are much less tolerant of NHS idiosyncrasies, he will ask the question, “Why is that desk so high?” and “Why are all the bins in this hospital foot operated when half the people in here lack the use of their lower limbs?” Compare this with mum’s perspective that yes, in an ideal world there would be a low counter but we have more pressing issues so, we have to pick our battles wisely.

The transition of moving from mum’s care to my dad’s is taking some adjustment for me. Dad and I are not so polished as my mum but, like many British institutions, we get there in the end.

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!