In March 2015, I went for a routine pacemaker check and discovered my pacemaker’s battery was about to run out and I needed a battery change straight away. I had been feeling extra tired for a while, but battery failure had not occurred to me, as it was supposed to last about ten years and I’d had the pacemaker fitted in 2009. So, all of a sudden I was going to be staying overnight in a hospital in London, about 2 hours away from home. My mum was at our house, looking after our then just–turned-two year old daughter, so I called her, and luckily she was able to stay a couple of days longer. My main concern at the time was that we were due to fly to Glasgow for my brother in law’s wedding on the Friday (this was Wednesday, if I remember rightly), and I wasn’t sure I would be able to so soon after having my battery changed.
A few hours after my original outpatients pacing check, I found myself on a trolley going to the theatre/lab where they were going to do the battery change. When I’d had my pacemaker put in I had a general anaesthetic, but this time, as it was only a battery (or, as it’s called, box) change, it would only be a local and some sedative, so I would still be awake for the procedure. It reminded me a bit of when I gave birth and they administered the spinal block – in the way the doctor kept checking how numb I was in the relevant bits of my body. It was all a bit weird. A bit like at the dentist, although it didn’t hurt as such, I could still feel the rummaging around (there is no other way to describe it) in my chest trying to get the old pacemaker box out. My original one had been put in quite deep and in an awkward place, apparently, so it almost took longer to find and disconnect the old battery than it did to implant the new one. It was uncomfortable, and sometimes it was a bit painful. I squeaked on several occasions and the doctor thought I was too anxious (you’d be anxious if you were being cut open and a strange man had his hand inside your chest cavity) so the anaesthetist gave me some more sedative. I’m not sure how much difference it made.
It occurred to me afterwards that in no other situation would it be OK for someone to lie awake and be cut open and have objects removed and implanted into their body. It did hurt – obviously not as much as if I had had no anaesthetic and sedative at all but it was an unpleasant experience. In The Wounded Storyteller, Arthur Frank talks about the “…troubling analogy between torture and medical treatment”, and indeed it is scary how similar these two things can be. If it was not for the medical setting, what I and many, many others have been through would be classed as torture. It is only because it’s seen as being for our (own) good that it is seen as a positive experience as opposed to a serious crime.
But the effect on the body and mind is/can be the same as if it really were torture instead of treatment. The body, and especially a child’s mind but also any human mind, at a basic reptilian level, can’t tell the difference between torture and treatment. Hence there are lots of people out there with PTSD as a result of medical procedures. I once read that having open heart surgery has the equivalent effect on the body as a serious car accident – and I am sure this is the case in terms of the effect on both the body and the mind. But, although the situation is getting better, there is still very little support out there for people who have gone through heart surgery, or long term medical treatment/interventions.
Although we, patients, are being helped by the doctors performing the interventions we experience, the reality is that there are times, for some of us many times, when we are not in control of our own bodies. I expect it is easy to read these things and not really realise the whole sense of them, especially if you have been fortunate enough never to have had a serious illness/condition/injury. Patients experience a massive lack of control over their own bodies and, perhaps to a lesser extent (or perhaps not), over their life choices. On an incident by incident basis, there are times when they literally have no control over their own bodies – they may be unconscious, or they may be sedated, or they may be awake and physically able but they have to submit to the medical treatment for their own good. There is no choice – the patient’s body and life have been colonised, both by their illness and by ‘Medicine’. I’m not sure it is possible for a healthy person to fully understand how this is, what this is like, because I don’t think it’s like anything else. In a medical setting we stop being people and start being ‘patients’ – a word I have overused here, but I don’t know how else to call us. Dan Gottlieb says that “we become their patients and live in their hospital” – we are colonised.
“Body-selves are unmade in all sufferings”.
Arthur Frank
Even when the ill person is cared for this does not necessarily lessen their suffering – indeed the treatment can be the cause of the suffering. Of course it helps if we are given treatment by people who really care about us, and, more importantly, demonstrate that care (in ways other than by giving us medical treatment). We need to know we are valued as human beings with feelings and minds, we need to be spoken to as if we are people, as valuable as doctors, as valuable as anyone else. But more importantly we need to be listened to and ‘heard’. This kind of care, this chesed (lovingkindness), might not lessen our physical sufferings, but it might do something to ease our minds.