It is his youngest’s birthday today. His oldest is in the military, like he was. Except he served in the navy, in Vietnam. He has a birthday soon, next month. He’d really like to live til then.
We talked while he awaited transport to the emergency department. He had come to Cardiology Clinic for an evaluation of palpitations, but when he arrived, his respiratory distress roused an alternative assessment; he sank slowly into a chair and struggled to breathe–his mouth open, his chest flung forward, and hands on his knees. His laconic speech expressed the extent of his hypoxia and the pulse oximeter confirmed it.
While we waited, he spoke. He told me about trying to get air, about his overwhelming search for a satisfying breath. He told me that when he feels his worst, he holds his face in front of the air conditioner. Sometimes he steps outside and buries his face in a gust of wind, especially in the winter. When he drinks orange juice, he has to pause between sips–his breakfasts take longer now. On auscultation, his lung sounds were silent–the air stagnant, incompatible with the motion of his striving chest. I understood, then, why he wanted to feel the air move.
The cigarette scars on his lungs alter the physiology of his breathing and, in turn, his experience of the world. Breathing shifts from being autonomic and automatic, an unceasing thoracic cadence, to the defining aspect of his life. Walking, speaking, and sipping change from silent and implicit to clamorous and challenging. His lung disease removes him from the realm of the familiar, of breathing without awareness, to an experience of the world that is now dictated by breath.
According to the phenomenologist Maurice Merleau-Ponty,1 human experience is fundamentally embodied. In other words, experience is contingent on physical existence. This idea arises from the observation that we do not simply possess a body; rather, the body is always present, implicit in every action. We inhabit the body; we live with it and through it. Such a view attenuates the cartesian understanding of the body and mind as distinct. More aptly, the mind and body coexist, consistent with the expression of neuroscientist-philosophers Shaun Gallagher and Dan Zahavi,2 “an embodied mind, a minded body.”
This perspective has several potential applications to medicine. First, it provides a unique framework for investigating the experience of chronic illness. The inextricable contribution of flesh to experience is followed by the corollary that changes to the body–such as those which occur in a disease state–result in radical changes to one’s lived experience. Put simply, an alteration of the body yields an alteration in one’s awareness and interaction with the world. As for the veteran above, emphysema induced a new awareness of breathing and breath.3
A second corollary to this framework, which follows from the first, is that an alteration in the experience or awareness of the world is followed by an alteration in action. In essence, a physical change is accommodated for, and a person remodels their life to assimilate a change in the awareness of the world. Such homeostatic mechanisms may fail to return a patient to their baseline of experience, but this compensatory response indicates something fundamental about the disease process. Returning to the veteran, we can see how routine actions like the time it takes to drink orange juice have changed, and how new actions have commenced: sitting in front of an air conditioner and going outside.
Therefore, two fundamental transmutations can occur in the experience of illness. The first is the change in a baseline, how a person’s placement on the continuum of “being able to do” and “not being able to do” has shifted. The second reflects how a person has had to adapt to a new baseline and how their actions have been amended.
Sartre expands upon Merleau-Ponty’s concept of the embodied experience. He breaks bodily awareness into three component pieces: (1) the subjective body—the body as a somatic mediator of experience, the lived-in body, the body through which we feel; (2) the objective body—the body that exists in the material world, on the same plane as dust and soil and subway cars. The third form of experience involves an awareness of the body as it is construed by others, where one considers their body from another’s perspective. Like in shame. Like in the medical office when a patient answers questions about their body.
It is this third perspective that is classically embraced as the place for patients and providers to unite. Here, we ask patients to forgo their lived experiences and attend to their bodies as we do. By doing so, we take a patient’s concerns out of context; we impose an artificial structure of experience. For instance, we often ask about broadly reproducible actions–“How many city blocks can you walk? How many flights of stairs can you climb?”–to establish a baseline that we, in theory, can comprehend. We use these questions to glean a number that we place on a generalizable scale, a way to compare one patient to the other. And we integrate these scores and scales with yardsticks to generate a clinical summary of a patient. Yet we do not understand everything else about the patient; we do not know the approximations they are making or which experiences they are invoking. We reduce their motions to nameless numbers; we sanitize away the subjective from illness experience. Ultimately, what we get is a contrived perspective of a theoretical action.
These questions rarely explain how a person’s life has had to change reflexively. The question “How does this impact your life” is sometimes asked, yet it is vague and intangible. Furthermore, this question does not attempt to tether these remodeled actions to a change in bodily awareness, or by the transitive property, to a change in the body itself. We see each change as a distinct repercussion of the disease process rather than as a cascade emanating from one fundamental change.
Perhaps we can learn to get a history grounded in the lived-in body. One way to do this is to evaluate habits. Habits are actions reproducibly performed by the patient. They reflect a baseline well known to the patient and are repeated frequently; they also reflect something vital to a person’s lived experience. The human reflex towards homeostasis suggests that these core actions are reconfigured early in illness.
Habits also reflect a link between the body as lived in and the body as an object. During the execution of a habit, the body is experienced in an embodied way, but it also approximates an object, a tool, or a material in motion. The body becomes an apparatus subjectively inhabited and embedded in the objective world. In this way, habits tether the physical body and perceptual embodied form, and they do this day after day.
In illness, the body also exists in the liminal space between the experiential and material. We subjectively experience illness as we become increasingly aware of the objective body in a new way. For example, in essential hypertension, a patient may, for the first time, consider their arteries: that they have a structure, that they distend and distort, that the endothelium that lines them is subject to shearing and torsional forces. The patient may then also learn how arteries harden and sclerose, that they sustain damage in the way that subway tracks distend under the weight of trains, and highways crack beneath rivers of cars. The structural isomerism between the human body and the material world is recognized–the objective body, its role as a physical object governed by physics, is finally seen.
Perhaps, therefore, we can ascertain a deeper understanding of illness by orienting ourselves around the structure of a habit; we can first establish a baseline unique and well known to the patient. We can learn how an illness experience has (or has not) affected a daily routine. Finally, we can learn the extent to which they have been able to accommodate and the extent to which a habit or routine has evaporated with the disease. From an assessment of habits grounded in a phenomenological perspective of the body, we can gain tremendous insight into the impact of illness.
Mercedes Fissore-O’Leary is a 2nd year medical student at NYU Grossman School of Medicine
Reviewed by Michael Tanner, MD, associate editor, Clinical Correlations
Image courtesy of Wikimedia Commons, source: File:Doctor showing form.jpg|Doctor_showing_form
- Merleau-Ponty M. Phenomenology of Perception. London: Routledge & Kegan Paul; 1962.
- Gallagher S, Zahavi D. The Phenomenological Mind. Routledge; 2007.
- Carel H. Phenomenological features of the body | Phenomenology of illness | Oxford Academic. OUP Academic. Published September 1, 2016. Accessed September 7, 2022. https://academic.oup.com/book/8662/chapter/154653061
- Sartre J-P. Being and Nothingness. Simon and Schuster; 1992.
- Ramm BJ. Body, self and others: Harding, Sartre and Merleau-Ponty on intersubjectivity. Philosophies. 2021;(4):100. doi:10.3390/philosophies6040100.
- Carel H. Invisible suffering–atmospheres of breathing. NCBI Bookshelf. National Center for Biotechnology Information. Accessed September 7, 2022. https://www.ncbi.nlm.nih.gov/books/NBK535570/