As I spoke, people looked at me worriedly. The kindness in their eyes was mixed with curiosity and concern. Rather than answering me, they turned to each other to discuss something beyond my grasp. I had aphasia and my incoherent stream of words was puzzling to the people around me. I spoke, I thought, in perfect sentences but communicated without conveying meaning at all. Yet, though I was unaware of my affliction, I registered that people were reacting to me in a different manner than usual. I was, you may say, oblivious to the brain damage but mindful of the social distortion it caused.
I had just been released from hospital. My recollection is sparse from my time there. I remember being in a semi-conscious warm haze in the intensive ward, having dinner with a guy who was (literally) trying to eat soup with a fork in the neurological ward, and then sharing a room with an old man whose brain cancer made him throw up at 20-minute intervals around the clock. But time had lost specificity and the unlikely presence of more profound reflections was forgotten.
After I came home, the aphasia eventually waned, and I am no longer terribly troubled by the disorder. Fragments of it have stayed with me as a nuisance rather than an impediment. I still struggle to find words and am persistently poor at getting proverbs right – the latter being related to the metalinguistic difficulties characteristic of aphasia. Mixing proverbs up does not make one sound bright, and with my vanity intact I try to avoid them, but except for that I have generally been able to leave the most troubling cognitive effects of the brain damage behind.
What remains at this later stage in my social-cognitive journey is a periodic situational and relational unease tied to doubt and distortion. Heightened levels of social doubt are – I have lately come to realise – a commonly shared predicament among people with brain damage. Or rather, being self-consciously aware that one is brain-damaged makes one uncertain of how much of a difficult situation one has actally fathomed. It produces an eerie feedback loop in which people become mindful of the change or malfunctioning of the faculty with which they are mindful in the first place. For me, it was an uncanny experience, a situational dismantling that made me critically contemplate the way I contemplate. The result was akin to a stutter, an intersection of practice by reflection that affected the ongoing flow of things as a hesitant, awkward engagement in social life.
While I have currently regained a comfortability in my understanding of abstract thought, I still worry and over-ponder my understanding of situations where there is something at stake. I remain nervous that something obvious to others might evade my grasp of the world and the unease inserts hesitation into interaction. It makes self-monitoring a state of hyper-vigilance, and produces a feeling of being slightly yet persistently off-kilter in relation to my social surroundings. There may as such be a sense of loneliness to brain damage as a realisation of no longer inhabiting the social world in the same fully shared and in-flow manner as before. It gives way to a feeling of only peripheral or conditional participation. It leads to an experience of being simultaneously a part of, as well as apart from, social life.
In this piece I wish to look back at the period in question and ponder how to approach some of the social effects of brain damage anthropologically. I will spare you the details of my trauma, and merely mention that though I do not have dementia and no longer feel terribly troubled by the five haemorrhages I suffered a handful of years ago, the affliction leaves me able to approach the experience of brain damage as more than an abstraction or a foreign state and mental territory. The trauma-induced damage I suffered is obviously different from the decline in mental capacity associated with dementia. As a progressive affliction, as a process of ‘dementing’ (Saunders 2017), it affects people differently. Yet even as a gradual deterioration of thinking skills the way it impacts upon people’s relations and participation in social life may resonate with my experience. In what follows I will try to capture how this happens through the concepts of social distortion, displacement and nullification. Distortion refers, in this perspective, to the unlooked-for course of change that brain damage signifies; displacement to the state of becoming foreign to what was formerly familiar that it may entail; and nullification to a loss of relational worth and centrality that it may bring about.
From the initial puzzlement of minor cognitive change to ‘memory’s last breath’ (Ibid.) dementia stands as a process of change that is social to the core; of being and becoming progressively more incapable of participating in the way one used to in social life. However, unlike the shock of a profound and swiftly induced brain damage, dementia allows people to reflect upon their unhinging as it happens. Not only are its sufferers able to fathom the early stages of the disease, they are, until a certain stage, capable of anticipating its progression and of monitoring the way it affects their social being and relationality.
In my case the damage opened up a space of uncertainty that was prospectively defined. Where I formerly took my bearings and where I imagined my life trajectories to be heading were no longer valid vistas and visions. It was simultaneously a change in being and becoming as the impairment not only changed how I saw myself, it influenced the way that I imagined my future relations to and with others would unfold. For people with chronic and terminal diseases the loss of relational viability can be brutally traumatic. It is ontologically unsettling. How we see ourselves as becoming within a relational landscape is a defining aspect of our present understanding of ourselves.
In similar terms, dementia can be seen as a process of distortion (Rapport 2016). From the perspective of a life lived and imagined along various horizons it induces a slow process of alteration whose outcome might be certain but whose relational manifestations and consequences are as yet unknown. In other words, the question of who I am, as specified in terms of who I will be, is cast into doubt.
Such distortion may be experienced as a process of displacement, not in terms of becoming foreign to one’s physical surroundings but dislocated in one’s relational landscape. In contrast to ‘emplacement’, displacement can be seen as an unwilling imposition of social distance. In my own case I came to fear that the damage done would cause a change in my relationship with significant others and my ability to maintain relations in worthy ways. It was, first of all, a process of distortion as an unanticipated decay of the way that I was able to grasp and participate in social life and a shift in in the way I stretched out toward proper and valued personhood. But equally profoundly, it was disturbing in terms of the related uncertainty of how others would place and perceive me.
The initial period following my brain damage was not spent worrying about the handicap. It was spent worrying about my intimate and close relations, and if they would remain close if my impairment changed their picture of me or my ability to engage in a proper manner. I was afraid of the relational change that the damage could trigger. It was a disconcerting experience of somehow having become foreign to myself as I became different to the people around me and, consequently, distant from who I was and wanted to be. Much the same can be the case with dementia. Getting a diagnosis may generally trigger a shift from person to patient, yet the progressive decline of dementia may equally lead people to reimagine who they will become in relation to family and friends, as the disease makes them drift away from the social responsibilities and abilities that they used to hold. While the brain damage led me and may lead others to being displaced physically – moved to hospitals, clinics, nursing homes, and hospices – it carries with it an underlying relational displacement, which travels with people out of the institutions and into what is considered ‘normal’ and ‘home’.
Becoming brain damaged thus generated a certain uncertainty in terms of my social ability and positionality. Not only did I feel changed from within (distortion), the impairment made me anxious about becoming distanced from where I wanted to be socially and relationally (displacement). Taken together the two left me concerned that I would be and become of lesser significance for those I desired to be of importance to. I feared that the haemorrhages would leave me less of a husband, father, researcher, etc. in my wife’s, children’s and umwelt’s perspectives. It was a concern centred on becoming of lesser worth in the eyes of the other – of becoming, we may say, socially nullified (Vigh 2017).
Nullification is, in this perspective, not to be understood philosophically as an analytical reduction bracketing out the actual world to arrive at the phenomenological (see Husserl  2012) but rather as the process of becoming socially unsubstantiated through the bracketing out of one’s social capacity and centrality. Similar to displacement it is defined by the drifting away from being a constructive part of the social landscape, yet specifically captures the experience of becoming a different and lesser version of oneself – or of being treated as such.
In the case of dementia, the disease may be felt as a flow towards null, that is as a hollowing out of one’s personhood, yet the angst is probably a more common one among people with brain damage and centered on how it changes who one is in terms of what one is and can be for others. If dementia is a cognitive deterioration that affects people’s social participation, then at times this will most likely translate into a qualitative change in interactional terms. The ‘peripheral participants’ of being afflicted and a patient often result in an experience of what we may term ‘translucent presence’. That is, of being present yet concurrently external to the social situation – of people ‘seeing right through me’ or ‘being treated as if I were not there’. The phenomenon is described in a range of ways in everyday language, but common to most of these is the experience of being someone whose opinion and knowledge is disregarded and circumvented as irrelevant or problematic in the situation. Being reduced to a patient can in many ways lead to a sense of nullification as a hollowing out in interactional terms, the opposite of which is social substantiation, the experience of ‘being somebody’ whose presence is recognized. The point may be banal, but while having a valued social being indicates the aspiration that guides many people’s actions, it equally hints at the sting of dementing into the opposite.
My impairment was a relatively temporary one. Brain damage was sudden and hefty, yet I found myself moving toward regaining my cognitive abilities relatively quickly. In contrast, dementia often has an inverse movement as a state of regression rather than progression. Despite it being a trajectory, it becomes, however, its own condition, framing social life in particular ways. I have no way of knowing how it does so in all its multitude and variability, but I know brain damage and hope to have captured a few of the possible dynamics at play with the piece at hand.
Rapport, N. (2001). Communicational distortion and the constitution of society. In: An Anthropology of Indirect Comunication. Hendry, J. and C. W. Watson eds. London: Routledge
Rapport, N. (2017). Conceptualising the ‘Distortion of Social Life.’ In: Distortion: Social processes beyond the structured and systemic. Red. N. Rapport. London: Routledge
Saunders, G. (2017). Memory’s Last Breath: Field notes on my dementia. London: Hachette
Vigh, H. E. Vigh, H. 2017. Caring through Crime: ethical ambivalence and the cocaine trade in Bissau. Africa, International African Institute 87 (3): 479-495
Vigh, H. E. (2017). Contorted Environments and Distorted Being. In: Distortion: Social processes beyond the structured and systemic. Red. N. Rapport. London: Routledge
Henrik Vigh is Professor of Anthropology and head of the Centre for Cross-Border Criminology at the University of Copenhagen. He is the author of Navigating Terrains of war (2006) and has written extensively on conflict, crisis and crime. He has researched issues of youth and conflict in both Europe and Africa and is currently researching the intersection between war and crime focussing on the trans-national movement of cocaine through militant networks.
This post is a contribution to ‘Daily life’ in the Somatosphere series ‘Thinking with dementia.’
Read the next story in the series here.
Read the refraction of the theme here.