In this moving and personal blog post, Wendy Stainton-Rogers explores her experiences of the meaningful everyday practice of getting her ears pierced. Wendy connects this with her experience becoming, and remaining, the medical subject and object due to serious illness and disability.
Three weeks ago I went into a jeweller’s shop in a busy shopping mall and got my ears pierced. It was on my ‘day out’ to celebrate my 71st birthday. Possibly a bit of a weird thing to do at my age, but not that big a deal surely? Actually, for me it was a very big deal. It was the first time in years that I had got something done to my body for a frivolous reason rather than for a medical one.
In 2011 during a biopsy to see if I had cancer, my bowel was accidently punctured and, a day or so later, I felt dreadful and my temperature skyrocketed, the alarm was called and I needed to have many hours of emergency surgery to deal with the septicaemia that had ensued. From that point on my life changed dramatically and I became highly medicalised. I was incredibly compromised, ill and weak and totally dependent. For several years after that, surgical catastrophes followed, one after another and my life became completely dominated by medical procedures. These ranged from the minor ones – such as regular ‘obs’ (observations – the taking of my temperature, blood pressure and pulse throughout the day and sometimes all night too), through constantly having routine cannulas fitted and being sent for all manner of Scans, X-Rays and Ultrasounds, to very invasive procedures, such as having a Hickman line fitted (more on this later). This powerful medicalisation of my body, my life and my consciousness was intensified in the weeks and days following two further lengthy surgical procedures attempting to get rid of the cancer. Each time I ended up in intensive and then critical care, linked up to a barrage of machines, with a dedicated nurse constantly looking after me.
As a health psychologist, ‘medicalisation’ is a word I had certainly read about and even written about, but it signified little to me of the enormous impact of what it can do to a person – that is, until I experienced it for myself. The days of horror are over (I hope!) but I am left disabled in some interesting ways, so my life is still dominated by medicalisation. The outcome of all that went wrong with my body is that my gut was destroyed and I have a condition called ‘total intestinal failure’. This means I have to have artificial food supplied through the Hickman Line – a tube that enters my body just at the top of my left breast and goes into my bloodstream near my heart.
Every night my line has to be ‘put up’; that is, attached to a ‘giving set’ (another tube that is joined up to a 3 litre bag of liquid food) via a pump, so that the food I need to keep me alive can be pumped into my body. The pumping takes about eleven hours. ‘Putting me up’ is a fine-tuned procedure that Robin (my husband and my carer) and I do together, following strict instructions to keep the line sterile (it took us three weeks in hospital to be trained to do this). An infection in the line is potentially lethal, and leads to immediate hospitalisation and what my GP calls ‘scary antibiotics’, so we are very vigilant to make sure we get it right.
These hours of food pumping rather mucks up your day! The eleven and a half hours of ‘putting up’, pumping and ‘taking down’ is an invariable constant that has to be built into my life. At first I spent all of the time in bed, but it’s much easier now that I have a smaller stand that is easier to manipulate. I can have my food pumped into me anywhere I can get it to so I don’t have to be in bed. At one conference I wheeled it into the bar, making life much more sociable.
This kind of intrusion into one’s time is one of the strongest downsides of being medicalised. It’s all too easy to talk blithely about people having procedures like, say, chemotherapy or renal dialysis and to not to properly realise the enormous impact the way in which it devours time for the person concerned. It is totally life-limiting and intrusive.
Medicalisation has many, many facets in addition to eating into time. Another is what it does to your identity. So – back to the earrings. They used, in the past, to be very much part of my ‘style’. I have a gargantuan collection of earrings – elegant ones to wear to job interviews, flamboyant ones for parties and dancing, deeply emotionally meaningful ones that I had been given to mark special days – the list goes on and on. But through all the horrors and tribulations of hospital treatment earrings were clearly not something I could wear, and even when I got home, for a long time I was just too weak and clumsy to get them in. So my piercings closed up, and for a long while I was so sensitised to the need to be sterile that I couldn’t contemplate having my ears pierced again for fear of infection. So my ‘birthday treat’ was, indeed, a really, extremely, fabulously and magnificently big deal. And now only a few more weeks to go and I can be as frivolous with my ears as I want. Hallelujah!
1 Picture kindly provided by Wendy Stainton-Rogers to accompany this blog post.