Anthropological response

“My breathing requires mental effort or concentration”, “My breathing requires muscle work or effort”. Why are these questionnaire items problematic? Is it because both raise questions on the boundaries between a sense of ‘me’, ‘my breath and/or body’ and a conscious ‘I’? Or what Analayo, writing from the meditative tradition, describes as the conditional interrelationship between physical and mental phenomena: “as breathing is a process that can take place either involuntarily or deliberately, it stands in a distinctive conditional position in regard to body and mind, and therefore offers an opportunity to contemplate the conditional interrelationship between physical and mental phenomena”.18

For this man living with COPD, the questionnaire items on muscle effort or mental effort trigger a reflective discussion on selfhood and the breath as he explores “who is breathing and who am I when I am struggling to breathe”. Pathology and breathlessness, like meditation, appears to offer its own doorway into contemplating the interrelationship between physical and mental phenomena.

He begins by noticing that as soon as he becomes breathless, the “normal” self he identifies with is absent: “he’s gone”. These two items are problematic in part because his respiratory limitation is not ‘who he is’ all the time. His pulmonary disease disrupts his biographical flow several times a day.19 He is fine when at rest, reading a book, but could not walk eight metres without getting extremely breathless. What we see unravelling in this extract is a contemplation of his two breath selves. Each breath self could complete its own respiratory questionnaire because experientially they are two separate persons who appear unreconcilable. There is resonance here with work on bodily doubt that distinguishes the state of bodily certainty, in which the possibility of actions is taken for granted, from bodily doubt, where the certainty is replaced by a sense of uncertainty about whether the body can be trusted to perform as before.20

Further on in the account, the interviewee mimics gasping breaths and asks “is that me? My muscles working or my brain telling my lungs to start working?” He separates out his sensory experience (gasping) from a sense of person (me), from his physical body (my muscles) and all three from his command body (my brain). We see in his statement “my brain is making me breathe” and “my lungs aren’t telling me to breathe” that there is an expressed sense of ‘I’ (selfhood) that is separate from his bodily organs (lungs and brain) and bodily processes (breathing). The organs are given agency, they can force action, they can ‘make’ and ‘tell’ or ‘not tell’ but underneath this experience is a perception of a fixed ‘me’. Why does this matter?

It matters because according to the logic of early Buddhist thought, what causes suffering is our attachment to the idea of a fixed self and a reification of perceptual and sensory experience as ‘mine’. This is not dissimilar to general tenets of therapeutic process which involves being able to stand back from the part of us that causes our suffering and see it differently. It “implies the conceptual division of the self” in which the part of us which causes our suffering, in this case breath or lungs, are “given a personality with [their] own needs and will.”21 Crucially, suffering is eased when there is a reconciliation of the divided self, “a reintegration of the self’s two parts […] a self which needs to become conscious of its internal conflicts to bring them into relationship and eventual harmony”.22 Elsewhere, we have explored how arts and health approaches may facilitate the journey from ‘breath as antagonist’ to reconciliation.23 Responding to even a short excerpt of textual data demonstrates that breathlessness is more than just a vital symptom, it opens up questions on ‘what makes a person’. As Faull and colleagues suggest, breathlessness needs to be treated as something more than pathophysiology: “the point is to view breathlessness as something that might not directly correspond to airway pathophysiology and which may need to be treated both in parallel and independently of the lungs”.24

Philosophy response

From a philosophical–phenomenological perspective, illness changes the lived experience of the ill person. It disrupts routines and habits and draws attention to bodily phenomena that are otherwise tacit.25 The body’s transparency, to use Sartre’s term, is replaced by an opaque, troubling presence. The body can no longer be taken for granted and bodily functions require attention, thus occluding the previous transparency. Within this framework, the interview excerpt reads like a lament for that lost transparency, accompanied by a sense of confusion, perhaps disorientation, as the interviewee tries to make sense of his disrupted embodiment. In this commentary, I’d like to point to the series of rifts that characterise breathlessness, which I have also analysed recently elsewhere.26

The first is the gap pointed out by the interviewee between normal (resting) breathing and pathological (on exertion) breathing. The interviewee states “I could do two sheets [questionnaires] of that, one when I’m exercising and one when I’m not”. This expresses the duality of his breathing experience: when resting, it is restful, easy, automatic, effortless, but becomes restless, stressful, difficult, explicit, on exertion. While normal breathlessness feels controlled, willed and often pleasurable, pathological breathlessness is felt as loss of control, frightening and distressing. I believe that pathological bodily experiences are not simply extreme forms of normal bodily experience but are underpinned by different qualitative and interpretative elements. Healthy breathlessness is temporary, normal and expected. Pathological breathlessness is chronic, abnormal (disproportionate to the task, eg, walking eight metres) and unexpected. It is out of the ordinary. I think that is what the interviewee means when he speaks of ‘two sheets’.

Another rift is revealed in the conflicting attitudes and emotions characterising the interviewee’s relationship to his breath. He is unsure whether muscles are involved in breathing; he is uncertain as to whether one can exercise one’s brain; he finds the difference between breathing at rest and on exertion baffling. The text is full of gaps, gasps, abrupt halts, question marks: ‘is that me?’ […] ‘my lungs haven’t got any muscles, have they?’ […] ‘I don’t think it, I don’t think it does’. It reads a little like a Beckettian monologue: full of about-faces, abrupt stops, gaps, unfinished sentences. The text itself is breathless. The interview performs the breathlessness of the interviewee. The interviewee tries to describe the experience of breathlessness, but language seems to fall short of the task. “… and you, then you’re trying to get, fill your lungs and calm down. […] you come back in again and you go… and you’re gasping for breath, you take deep breaths, as much as you can until it gets painful, to try and breathe…” The text is textured by sounds of breath: deep inhalations, throat clearing, gasping and sighing. These are all breath sounds, voiced exhalations. And they punctuate the text excessively, mirroring the continued yet failed attempt to tame, calm and understand the breath.

The final rift is that of failure(s). The rift between attempting to understand breathlessness and failing to grasp it. And between attempting to control the breath and succumbing to breathlessness. Given this internal turmoil, it is not surprising that breathlessness remains poorly understood by health professionals and those who do not suffer from it. This excerpt exemplifies how difficult it is to speak about breathlessness and how difficult it is to speak when breathless. The two difficulties intertwine in profound and complex ways, making breathlessness invisible. What the interview enacts is the difficulty of expressing this intimate yet overwhelming experience. It is hard to put into words and it is also hard to get the words out when one is so short of breath.

Literary response

References to breath, when they appear in literary texts, bear an uncanny resemblance to markedness.27 Markedness is a contested linguistic category that differentiates two forms of an utterance: its dominant, assumed form (unmarked), and its variant, whose deviation from the dominant marks it as different. When Nikolai Trubetzkoy developed markedness theory, in his groundbreaking work on phonology, he identified unmarked, or dominant, terms as those utterances whose sound features deviated least from normal breathing.28 In literary texts, characters are assumed to breathe. Any reference to breath is therefore marked: it plays some role, significant or not, in the development of a narrative, character or plot. A parallel concern with markedness emerges in the interview. “See”, he says, “you could write a book, like that, on how you’re feeling and everything else, but you couldn’t put it down on one simple form”.

The text challenges the interviewee’s continued, uninterrupted sense of identity as a sufferer of breathlessness by using different pronouns to refer to himself. He begins the passage by referring to himself as “I”, a person who looks fit for a 76-year-old, only to shift that identification to “he”: this person, “he”, is “gone”. At several moments, the interviewee will invoke himself in the first person, but go on to describe his experiences of breathlessness as the conditions of a second person “you”. If these moments of dissociation help the interviewee to address deeply affecting conditions in a clear and honest fashion by taking them at some remove, they are also stylistically significant since they also perform precisely that alienation from the self that seems to happen after the interviewee walks eight metres: “he’s gone”.

Corresponding to these moments of stylistic transfers in identification are those moments when the interviewee reflects on the apparent autonomy of his organs. The interviewee describes his brain as “telling” him to breathe, as if this most central of organs were not fully incorporated into his self. This site of control is contrasted with the lungs, which “aren’t telling me to breathe”. These are linguistic parallelisms: semantically and/or syntactically similar phrases whose similarities highlight conceptual continuity or discontinuity. In this case, different body parts are paralleled through an instance of personification. In general, personification is the ascription of human qualities to nonhuman entities; here, it is the ability to speak. In this case, the parallel emphasises the interviewee’s understanding that the locus of control for breathlessness is the brain.

However, on closer analysis of this parallel against other references to control, the emphasis shifts from determining the locus of control to rendering it indeterminate. When imagining connexions between breath and the body, the locus of control is difficult to identify. While “my brain is controlling my breathing, making me breathe”, he reflects that “I’m not making a, er, a conscious effort of using muscle to work or, or effort”. He immediately contradicts this assertion—“I suppose I am…”—precisely because “that’s your diaphragm working”, he muses, “not your lungs working, isn’t it”. If parallel phrases about control helps to track the way in which its locus shifts, the consequence is to repeat those identification transfers already mentioned: “is that me? my muscles working or my brain telling my lungs to start working, but that’s not muscle effort, well I don’t think so anyway (sighs), to me my lungs haven’t got any muscles, have they?” The interviewee’s repeated reference to “muscle effort or work” frames a problem that exceeds its terms. “Doing work” may be repeated through the passage, but it fails to describe, consistently, the experience of breathlessness, an experience that seems to unmoor subjectivity and agency in language as much as in life.

Clinical response

The process of completing the questionnaire appears to prompt the interviewee to reflect more closely on their control of breathing. Intuitively, this feels like a good thing. However, this can lead to overinterpretation of the questions. Clinical questionnaires often prompt the person completing them not to do this and to go with the most instinctive answer. In general practice, breathlessness questionnaires are not used to assess the patient. This potentially gives the patient more opportunity to express their experience of breathlessness in their own words. However, in the absence of routine questions about breathlessness, it means that GPs rarely ask about this experience and end up with even less information about the impact of breathlessness on the patient’s life than that (imperfectly) captured in a respiratory questionnaire. In this interview, the patient expresses profound, repetitious loss. He has lost the “normal” man he was before his COPD severely limited his ability to walk more than a few metres without the onset of breathlessness. The interviewee expresses frustration with the questionnaire “I could say 10 to every one of them if I were exercising…”, “I could do two sheets of that, one when I’m exercising and one when I’m not”. It is almost impossible for a questionnaire to capture breathlessness in every situation. He goes on to articulate clearly the limitations of questionnaires in capturing lived experience: “You could write a book, like that, on how you’re feeling and everything else, but you couldn’t put it down on one simple form”. Clinicians, particularly specialists, can be justifiably criticised for being too focused on the physical, ignoring the psychosocial and by interpreting symptoms through their particular clinical interest (heart, lungs). However, patients often bring similar prejudices into the clinic. Demonstrated, we think, in this case by assuming that all the experience of breathlessness relates exclusively to the lung, ignoring the role of the muscles of respiration. Many passages in the transcript focus entirely on the lung, often detailing the anatomy, disconnecting this from any other part of the body.

In critiquing the question about mental effort or concentration being required for breathing, the interviewee recognises the subconscious automatic control of breathing, but dismisses the role of conscious control, not sharing the experience of some patients with chronic breathlessness who speak of having to make a conscious effort to take deeper breaths. Clinically, we know that there is both subconscious automatic control of respiration, taking place at the level of the brain stem, driven by physiological feedback from the lung and cardiovascular systems. The conscious control of breathing takes place in the higher cortical centres, often sharing pathways related to emotion and the processing of pain. it is interesting to observe that the interviewee conflates muscle effort with conscious control of breathing: “My breathing requires mental effort or concentration, no, it doesn’t. It just happens. My brain is telling me that. My lungs aren’t telling me to breathe”.

“Um, you take deep breaths—well, as much as you can until it gets painful”. We often neglect to actively enquire about pain when we meet people in clinic with lung disease. Perhaps incorrectly leaving this exclusively to the cardiologists pursuing the diagnosis of ischaemic heart disease or heart attacks. However, there is empirical evidence that people living with advanced COPD report chest pain as one of the most frequent symptoms. In general practice, we do ask about pain in relation to breathlessness, but exclusively to consider the possibility of angina. Reading the transcript was a reminder to me that I do not enquire about pain in the context of chronic breathlessness.

The invisibility of breathlessness at rest is a theme emerging from this interview. It reminds me of the times that I have not seen how burdensome chronic breathlessness is when the patient is sitting comfortably in front of me. I think the interviewee might be telling the interviewer about the invisibility of breathlessness, particularly at rest: “I mean you’ve seen what I’m like after exercising: you come back in again and you go (breathes deeply) and you’re gasping for breath”.

The body historical response

The participant experiences his most “natural” and effortless breathing to be like that of a baby, entirely lacking in any kind of painful intention or reflexivity: “I mean a little child when he’s freshly born, he doesn’t make any specific effort to breathe. I mean it’s a natural thing to breathe”. The participant seems to feel that all is well when breathing happens of its own accord, “naturally”, under control of the “brain”, and not the “muscles” (which he associates with volitional breathing or breathing of which he is painfully aware). Both current physiological models and forms of common sense, as expressed by the breathless interviewee, take breathing to be fundamentally involuntary, governed by the central pattern generator of the brainstem. But this way of experiencing the breath has a history. And that history reveals something about how much freedom is imagined to be possible for the human body and, therefore, for a human being.

Much like the interviewee, the Roman physician and philosopher Galen thought of the muscles as “the instruments of the will”, an imagination of the physiology of human autonomy with profound implications for many other aspects of body and self.29 Kuriyama argues that making the muscles the embodied source of the human will was tightly linked with anatomical thinking itself; the idea of the body as a collection of tools or “organs”. Galen recognised that breathing could manifest “automatically”, but he also thought of volitional breathing as deeply rooted in the human organism; an apocryphal story he first told would reappear in various forms well into the eighteenth century: slaves, lacking any other tool of protest, foiled their masters’ plans by holding their breath until they died.30 Breathing was taken to be such a volitional thing that it gave any breather ultimate determination over their own life or death.

But by the late nineteenth century, long unquestioned modes of human uniqueness including the faculty of “will” were under threat from new forms of materialism, and mechanistic and reductionistic models of body and self, including certain interpretations of Darwinism.31 When it came to human breathing, in the 1889 edition of Charles Darwin’s The Expressions of the Emotions in Man and Animals, a work in which he approached apparent human emotional and expressive uniqueness from an evolutionary perspective, he wrote that breathing was fundamentally, and ideally, not wilful: “Respiration is partly voluntary, but mainly reflex, and is performed in the most natural and best manner without the interference of the will”.32 Breathing was “mainly reflex”, much as the interviewee described.

Having closely studied both Charles Darwin and Charles Bell’s anatomies of expression,33 in 1905 R. Tait McKenzie, a Canadian professor of the new discipline of physical education, and, as it happened, an amateur sculptor, created a series that illustrated the stages of the peculiar fatigue of breathlessness; it was, he wrote, a composite of Charles Bell’s work on the “anxiety associated with bodily distress” together with the addition of “gaping mouth and expanded nostrils”.34, 35 He anatomised breathlessness in the following way:

“In this mask (no. 2 in figure 1) we have the typical face of the breathless man. The smoothness of the forehead is broken by wrinkles spreading out from the inner end of the updrawn eyebrows, where the general direction is just the reverse of that seen in violent effort; they are drawn upward and inward by the corrugator supercilii, the muscle of pain, which always acts in grief, mental distress, anxiety, and bodily pain”. (p.53)36

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Figure 1

The Facial Expression of Violent Effort, Breathlessness, and Fatigue53

It is interesting that for the earliest of McKenzie’s sources, the early-nineteenth-century anatomist Charles Bell, the corrugator supercilii muscle was “a muscle peculiar to human expression”.37 Though Darwin would later argue against this view, for Bell human facial expression was a matter of human uniqueness, and one of the key muscles at play in the peculiarity of human pain was a central feature of the pain of breathlessness, the corrugator supercilii: “The most remarkable muscle of the human face […] it knits the eyebrows with an energetic effect, which unaccountably, but irresistibly, conveys the idea of mind”.38 Before breathing became a reflex, or perhaps, in the case of breathlessness, a reflex gone wrong or pushed beyond its reasonable limit, the pain of breathlessness wasn’t just any pain; it was a kind of pain with a particular human element. It conveyed “the idea of a mind”.

Our imaginations of the body matter. Most poignantly, as we see behind the account of the interviewee’s breathlessness, they instruct us in how to suffer and determine the nature and meaning of that suffering. History reveals that these models change across time and place, and yet they are so intimate as to be hardly distinguishable from our very selves. But there is indeed a tiny gap, a niggling suspicion: “‘gasps gasps’, is that me?… my lungs haven’t got any muscles, have they?” To look historically at the body is to look into that space of possibility. When we consider the multiplicities of human breathing, we are at once considering the possibilities for human autonomy: which of many possible views gives us the most freedom to face the inevitability of breathlessness?

The anthropologist’s gaze

AM: The anthropological discipline shapes my approach to analysis through its prioritisation of three things: the thick description of the lived experience, the interpretative nature of analysis and the importance of the encounter of the researcher and the participant in the production of knowledge and ‘data’. Prior to joining the Life of Breath project, my work had explored mindfulness based approaches to supporting those living with breathlessness. Mindfulness comes from a Buddhist epistemology in which the breath is used as an object of meditation because it is seen as a doorway into self-observation. As a direct encounter with the ideas and work of OW through the Life of Breath project, I became interested in how breathlessness (as opposed to a meditative breath) may also lead someone to explore personhood. I approached the data with ideas about how we breathe life into personhood and with these ideas in mind, subsequent encounters with the data inspired an enquiry into how we differentiate (if we do at all) between ‘me, my breath and I’.

The philosopher’s gaze

HC: Philosophers are interested in concepts and ideas and how these shape our understanding of the world. The approach offered here, a phenomenological approach, has much in common with qualitative research. It aims to describe, not explain. It views the person as part of a complex web, and hence as situated within a world and engaged with other people. First and foremost, it views the person as embodied and her terms of embodiment as the foundation and structure of her experience. My textual analysis is an example of a philosophical approach to a text. I was looking for key words and ideas that could then be abstracted into a more general theme. In this case, the theme of ‘rifts’ emerged from my reading of the text.

The interdisciplinary research practised by the Life of Breath team has been profoundly significant for me. We set up the project with the belief that if we want to shed light on a phenomenon such as breathing, that can only be done using a network of disciplines and approaches. Being able to learn from colleagues from other disciplines gave me a critical perspective on my own discipline, as well as being deeply edifying in ways that are very different to engaging with others within my own discipline.

TW: As a philosopher, approaching breathing and breathlessness from the philosophical tradition prepared me to delve into historical accounts of the breath as pneuma in the pre-Socratics, for example, through to presentations in contemporary philosophy. However, the paucity of such explorations in Western philosophy revealed that not only did the breath need to be re-covered and drawn forth, but that the work uncovered within this multidisciplinary group were vital for this. I found myself holding my breath when reading the data excerpt, echoing Levinas’s reflection that the lungs may be the truly ethical organ: it is through the breath in the encounter with the Other that we can be summoned to put our own agency and interests behind those of the Other.40 And what could be more ethically demanding than watching another gasp for breath? When someone is in such distress, struggling for breath, that demand is certainly undeniable.

The literary scholar’s gaze

AR: My response is conditioned by my training as a literary scholar who focuses on rhetoric, style and critical theory. I read the text first and foremost as a language object, conditioned by narrative coherence, linguistic parallelisms and metaphor. I encounter the interviewee primarily as a character, whose materiality and weight derives from descriptive language, mediating this abstraction by recalling that the interviewee is a real person describing real experiences. This mediation allows me to temper a first-order formalism, treating the passage as text, with a second-order ethical imperative, to remember the person behind the text. This play between the formal and the ethical is complicated by two further concerns: identification and context. I am trained to reflect on the ways in which readers identify with characters. In relation to the transcript, I am interested in the textual cues that provoke us to empathise with the ‘character’, and, by extension, the interviewee, as part of a language world. I am also trained to respond to language as context specific. Since I generally work with language objects that are crafted over time, my critical tools are ill-adapted to analysis of an interview transcript since I grant the precise meaning of the words a greater significance in developing context (narrative coherence), linking ideas (linguistic parallelisms) and figurative imagining (metaphor) than might be intended in an interviewee’s spontaneous reactions to interview questions, no matter how long they might take to consider this response. Working with the LoB team, where the patient voice is granted a centrality, has pushed me to reflect more on the pragmatics of everyday usage of breath language than is commonly suggested by literary scholarship on breath as a figural device.41

The clinician’s gaze

JD: As a specialist respiratory physician working in a busy teaching hospital, I supervise the care of acutely unwell patients admitted to hospital with lung disease and meet people in outpatient clinic sent to me by their GP and other healthcare professionals for assessment and advice about lung disease and breathing problems. While medical school and specialist training are grounded in traditional sciences such as physiology and biology, a good clinician appreciates that much of what we do is to synthesise subjective and ‘objective’ evidence accumulated through listening to our patients. We supplement this through physical examination and investigations including imaging and physiological measurements. It is the synthesis of this information, applied in the psychosocial context of the person sitting in front of us, that has long been considered the ‘art’ of medicine. Much of what is asked of me requires pragmatic output, in the form of diagnosis, advice on further investigations, monitoring and treatment. My clinical gaze in reviewing this transcript recognises the tension between the clinicians who develop these questionnaires, in an attempt to quantify breathlessness in a clinically meaningful way and the almost impossible task of capturing the truth of an individual’s experience of breathlessness at any given moment.

GF: As a GP working in a community-based practice, I am involved in an initial assessment of new-onset breathlessness, often making a diagnosis and starting treatment. I also encounter patients living with chronic breathlessness from lung disease (particularly COPD) or heart failure, as well as patients whose breathlessness is not based on any structural or physiological pathology. The general practice gaze, developed in postgraduate training, is explicitly biopsychosocial and this is applied to patients with new-onset or chronic breathlessness. This means that when patients present with a problem, my clinical gaze moves back-and-forth between their symptoms and signs, their emotional state, what I know or find out about their past experiences and their current living situation. The biopsychosocial gaze that I try to apply in my clinical practice has helped open me to the diverse perspectives on breathlessness shared and elaborated in the Life of Breath collaboration. Despite my attempting a biopsychosocial understanding of my patients’ condition, the languages of the medical body, human emotion and social context are not integrated—I switch between them in a consultation. Through my involvement in the Life of Breath project, I have become more aware of the epistemological and ontological leaps that this involves, the contingency of many breath-related diagnoses and measurement, and the potential for addressing breathlessness directly through enhanced understanding of biopsychosocial interactions.

The body historian’s gaze

OW: There are good reasons for keeping clinical practice and the writing of its history separate. One compelling reason for boundary keeping is that historical thinking can be powerfully destabilising. Histories of medicine do not reassure practitioners that they stand on solid ground or that the trajectory of history leads from a benighted past into a knowing present. Is there a way to use interdisciplinarity, including history, to make clinical practice even better—more effective, more humane— than it already is?

As an historian of medicine and the body, my approach to this problem is to consider the many different bodies that are found in historical sources. To set these many modes of experience side by side, following Polish-Israeli biologist, physician and philosopher Ludwik Fleck42 in what he called comparative epistemology, allows for a recognition of the ways that our own experience—usually taken to be the simple fact of the matter—is precisely situated. Taking seriously both the nature and existence of different modes of being a body affords us a form of what David Bohm has called “proprioception of thought”, bringing contingent givens out of the shadows and into awareness.43 We don’t take “other” models and experiences of the body seriously for antiquarian interest, for the construction of a cabinet of curiosities, or even because inclusivity is the right thing to do. We take the actual diversity of ways of being seriously—be they bodies and body models, institutions, clinical practices—because they are the logic from which all that seems given follows. Holding multiple perspectives need not entail a kind of groundless relativism; instead, comparison brings hidden limitations to light and points the way to new and unexpected possibilities for human flourishing.