Commentary on writing ‘ We would like you to listen to our hearts’

In my writing I’m interested in exploring how humans and technology live alongside each other and influence each other. For example, I’ve written a short story about the way in which a lab robot affects its human colleague, and my novel explores the emotions engendered by operating a telescope.

Outwith these obvious ‘sciencey’ settings there is a whole world of people and technologies to play with in fiction, and this is what has been intriguing me about Gill’s work.

I chat with Gill about her project and she gives me a lot of information on the medical devices she is studying. I’m fascinated by the thought of having mechanical additions to your body that are outwith your control and that act autonomously. In particular, the ICD has the ability to act suddenly and without any warning by delivering what is called ‘shock therapy’ to the patient’s heart. What must this feel like? Does the patient spend their entire life waiting to be shocked?

We discuss and agree that having a mechanical device working inside you, turning you into an ‘everyday cyborg’ as Gill has termed it, doesn’t necessarily detract from your humanity. On the contrary, it may add to it because there is no sufficiently complex definition of being human that accounts for our experienced lives. For example, Gill says that the standard modern discussions fail to take into account the wider society. Can we be human in isolation, or do we need other humans?

I think of the Ubuntu saying ‘I Am Because You Are’ (which I have just used for an anthology of writing about general relativity I edited). Perhaps this emphasis on trying to define our humanity without other people is a peculiar modern and western phenomenon.

And I think of other aspects of being human, such as clumsiness. Can a machine be clumsy? The German author Kleist wrote a famous essay on marionettes showing how their mechanical precision marked them out as inherently different to us. This leads us onto the ‘uncanny’ – Gill and I discuss the fact that objects trying and failing to be human, such as prosthetic limbs with artificially pink rubber surfaces pretending to be skin, can evoke this sense of something that is not quite right. Whereas prosthetic limbs which are simply bits of steel are more ‘comfortable’, their form is obvious and they are not trying to mimic the look of a human. (I’m reminded of my recent trip shopping for furniture and seeing a dresser that was obviously machine-made, but that had marks on it designed to look like those made by a person. It was very off-putting.)

Gill and I return to the subject matter of her research; as well as ICDs we talk about heart valve replacements. These can be mechanical or ‘biological’, i.e. from an animal, usually a pig or a cow. When I google this later I note that NHS guidance for potential recipients of these valves simply says that the valves might be made from ‘animal tissue’, with no further explanation of their source.

The NHS guidance also says the mechanical valve makes a ‘quiet clicking noise which can be disturbing at first’. That word ‘disturbing’ is itself quite disturbing and reminds me of Edgar Allan Poe’s classic horror story ‘The Tell-Tale Heart’ in which the relentless ticking of the murder victim’s heart (as heard by the narrator-murderer) is beautifully echoed in the sharp rhythms of the story’s language.

Just as the ticking valve is invisible and inserted deep within the patient’s body, I think it would be interesting to ‘bury’ Poe’s scary story deep within another text, maybe online, so that the reader can click on the surface text to find something else. Perhaps that surface text could be constructed out of the NHS guidance.

But I want to start by writing about the experience of having an ICD implanted within you. I read Gill’s paper based on interviews of patients, and then I read more NHS guidance. The content is interesting but I’m more struck by the way this guidance is framed, ‘we’ (the NHS experts) give guidance to ‘you’ (the reader and patient). ‘You’ are repeatedly told what ‘you will feel’.  ‘You’ are also told that ‘your doctor’ will do this or that. There is a clear hierarchy – with ‘we’ who are the authors and experts at the top, and ‘you’ at the bottom. There is no question that ‘you’ will accept this guidance, because ‘you’ seem to have no option.

The guidance aims to cover aspects of living with the ICD, including the emotional impact. It states unequivocally;

‘It is only natural that you will feel anxious about living with the device. This is normal.’

So I realise that the anxiety associated with the heart condition may now be transferred to the ICD, and perhaps that anxiety is actually increased by the presence of the device.

I am also intrigued by the idea of the ICD transmitting essential information about the patient – and this information cannot be controlled or even accessed by the patient. The information is used to monitor the patient’s heart and the function of the ICD, and it allows the patient greater autonomy, they don’t have to visit their doctor so often. But who sees this information and how does it feel to know that you’re transmitting a coded version of yourself into the airwaves?

In writing a story (any story) the first and most important aspect for me is to establish the voice. Who is telling this story and why? The voice is constructed from its choice of language. I realise I can tell a story through the guidance, both real and fictional, as well as the patients’ responses to it. ‘We’ can be the voice of the guidance and then switch to being the collective voice of the patients which can perhaps subvert the view of the patients that is disseminated by the guidance. That way I can emphasise what the patients share – that sense of common humanity that goes beyond the individual. In this case, the knowledge that other patients also have ICDs gives rise to this collective voice; ‘we’ have experienced something together even though ‘we’ have never met each other.

I spend a bit more than a week thinking and scribbling, and then send a draft to Gill. She comments that perhaps the language could be made more generic so that it’s relevant to both ICDs and valves. I adjust the story and tinker… and then it’s done.

Next stop is the Edgar Allan Poe mash-up. Watch this space!