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Illness as the Way of the Body

S. Kay Toombs

Toombs is a philosopher who has written The Meaning of Illness (Kluwer, 1992), an insightful phenomenological account of the strikingly different understandings of illness held by physician and patient. For over 20 years, Toombs has lived with multiple sclerosis‑-an incurable, progressively disabling disease of the central nervous system. This illness has, among other things, affected her ability to see, to hear, to sit, and to stand. She must now use a wheelchair because she can no longer lift her legs to walk.
    Many of Toombs' scholarly works, including the following selections, use her illness experience as a foundation for phenomenological inquiry. The first selection below is the first part of a paper, "The Way of the Body: Embodied Practice as Therapeutic Intervention," presented at the 1996 annual meeting of the Society for Phenomenology and Human Sciences (SPHS) in Washington, D.C. The second part of the paper, not included here, examines "the therapeutic value of embodied practice as a means of achieving a renewed sense of connectedness and harmony."
     The second selection below [not included in this Web version] is from "The Lived Experience of Disability," an article originally published in the journal
Human Studies. This article is a vivid, heartfelt phenomenological account of the human experience of disability. © 1997, 2003 Kay Toombs.

On July 16, 1995, I suffered a serious accident as I was returning home after attending a professional meeting in Canada. As I boarded a bus at an airport, I flipped straight over backwards in my wheelchair as I moved from the elevated wheelchair lift into the interior of the vehicle.

Although I sustained injuries to my head, neck, shoulders, back and hips, the most devastating result of my accident was‑-for the most part‑-invisible. Diagnosed several weeks later as post‑traumatic stress disorder, my most serious injury was an immediate, and all‑encompassing, uncontrollable terror of being in my wheelchair. Recovering from this trauma has taken many months but it has been a transformative experience in unexpected ways.

In this essay, I explore this lived experience and suggest that paying explicit attention to embodiment can be an integrative practice that results in a renewed sense of personal wholeness. In describing what it is like to live in the aftermath of this kind of physical trauma, I briefly discuss three manifestations of terror: first, an immediate and profound transformation of the surrounding world; second, an acute sense of separation between body and self; and, third, a strange and disordered experience of sensory awareness with respect to bodily movement and spatial location.

******

In my previous work on the phenomenology of illness and physical disability (Toombs 1992a, 1992b), I have detailed a number of changes that occur in the surrounding world. To give one example: loss of mobility causes one to experience physical space as unusually constrictive. When one is sick, the world shrinks to the confines of one's house or to the limits of one's room. What was formerly regard­ed as near (work, the neighbor's house, the doctor's office) is now experienced as far.

Moreover, body and world are so interrelated that dimensions of the sur­rounding world change according to the range of possible movements (­Toom­bs, 1995). From a wheelchair, for instance, most shelves in the grocery store have the characteristic of being impossibly high, beyond attainable reach. A problem with the body is concurrently a problem with the environment

My accident transformed the sur­rounding world in a different but startling‑-and intensely disturbing‑-manner. It was not simply that certain physical features of the environment presented themselves as problematic but rather that the world as a whole threatened in a myriad of ways.

Instead of being at home in a relatively safe and predictable landscape that I had learned successfully to negotiate in my wheelchair, I now felt constantly endangered by my hostile surroundings. Flat surfaces menaced since they concealed hidden obstacles, modest curb cuts were breathtakingly steep (so much so that just imagining wheeling up the ramp literally took my breath away). Uneven surfaces were inherently treacherous.  Indeed, so ominous was the surrounding world that I found it impossible to venture outside the house in my wheel­chair.

The terrain inside my house appeared only slightly less hazardous. Every time one of my wheels went over an insignificant bump such as a door threshold, or I unthinkingly shifted my weight so that my spine pressed against the back of the chair, I was immediately overcome by the terrifying sensation of falling‑-reliving again and again a gut‑churning sensation of flipping over backwards.

"It is like walking through a mine­field," I wrote in my journal, "forgetting for a moment that there is jeopardy and then tripping on a stone and knowing it could be a mine that will blow up in your face." It made absolutely no difference that I had installed stabilizers on my wheelchair, mak­ing it virtually impossible to overturn, or  that I knew, in my heart of hearts, that my fear was irrational.

******

Many months later, in a moment of reflection about my experience, I recognized the importance of Sartre's (1948, p.91) observation that in true emotion the world is apprehended as "magical"‑-a global transformation that renders inoperative common sense knowledge and interpretation.

In discussing this transformation, Sartre gives the example of catching sight of a grinning face flattened against the window pane. On seeing the face, Sartre notes, "I feel invaded by terror" (ibid., p. 82)‑-a feeling "that destroys all the structures of the world that might reject the magical and reduce the event to its proper proportions" (ibid., p. 86). The window is perceived as the frame of the horrible face rather than as "an object which must be broken." Its loca­tion is menacingly present rather than ap­pearing at "a distance of ten yards."

In this act of consciousness, the world is coherent but stripped of its instru­mental quality: "The face that frightens us through the window acts upon us without instruments. There is no need for the window to open, for a man to leap into the room and walk upon the floor" (ibid., pp. 87‑90). I apprehend my surroundings through the lens of my emotional state. I experience the world as fearful because I am afraid.

Following my accident, the surrounding world was also transformed in the sense that I no longer trusted my tacit "knowing how" to negotiate space. As Merleau‑Ponty notes, with habitual use objects such as a wheelchair are incorporated into the body becoming an extension of bodily space.

Just as the person on two feet unreflectively judges how high to lift a foot to clear a curb, so the person in a wheelchair unthinkingly performs physical movements and intuitively allows for the dimensions of the chair in navigating the environment.

My accident compromised this embodied knowledge. Since I had unexpectedly flipped backwards while performing a rou­tine maneuver (one that I do every day when I get into my own van), I no longer trusted my senses. Nothing had alerted me to the possibility that I might overturn. How could I now judge correctly when it was safe to move and when it was not?

This loss of confidence ruptured the embodied connection with my wheelchair. I no longer experi­enced my wheelchair as an integral aspect of my embodiment. Rather, I viewed it with suspicion as an object that I was forced to use, knowing that it could cause me great harm.

******

My experience of terror also manifested itself through a particular kind of bodily alienation‑-an alienation that reveals another aspect of the dynamic relation be­tween body/environment. Not only does a problem with the physical body engender a problem with the surrounding world, but it is equally true that a transformation in world results in a transformation in bodily being.

In responding to the world‑as‑threat, my body was its own barometer. It reacted, it assessed the situation, it judged when and how to respond to perceived danger or possible threat. Without warning and with­out my conscious involvement, my lungs would become suffocatingly short of breath, my heart would develop a rapidly escalating and erratic beat, the muscles in my shoulders, back and neck would become taut, the pit of my stomach would constrict, and‑-as a kind of crescendo‑-my body would endure the terrifying physical sensation of flipping over backwards. Although I could predict these bodily responses in certain situations, such as closing my eyes and imagining that I was wheeling up a slope, on most occa­sions my body reacted to a perceived danger of which I was not consciously aware. Conse­quently, I experienced my body as separate in a particularly disconcerting manner. Not only did it seem Other‑than‑me with its own physical nature but it seemed overtly to have a mind of its own, deciding when and how to react.

******

As this description makes clear, another manifestation of my accident was a strange and disordered experience of sensory awareness. My tactile and visual senses no longer provided accurate information with respect to bodily movement and my body's location in space.

Under normal circumstances kines­thetic sensation and proprioception give one a sense of where one's body is in space. If, for example, I reach for a glass of water, I know the position of my arm as it moves towards the glass. I am also implicitly aware that my body is facing in a certain direction and occupying a steady, and balanced, seated position at my particular place at the dinner table.

I also know that if I perform certain movements such as bending towards the floor to retrieve my dropped napkin, or leaning backwards so that the front legs of the chair no longer have contact with the floor, my sense of stability, motion, and direction will change accordingly.

My accident severed my moorings in space. I felt adrift in a completely unpredict­able and terrifyingly unstable environment. I might, for example, be seated motionless at my desk with eyes focused on the computer screen in front of me when a sudden, inexplicable shift of bodily position would initiate the visual, auditory, tactile, and visceral sensations of catapulting backwards towards the ground.

******

Many months later, as I reflect back on this traumatic recurring sensation of falling, I am struck by the fact that such experiences appear to involve what Husserl described as primary‑-rather than se­condary‑-memory. That is, as lived through, the sensation is a pre‑reflective originary experience rather than a reflective "as if" presentation that involves recollection.

In other words, my experience was not a "flash­back" to the actual incident of falling in the bus at the airport but rather an immediate sensory awareness that my body was moving rapidly backwards through space in the present moment and at the present location. This means that the perceived danger remains vividly present, losing none of its potency despite the fact that these recurring experiences result in no actual physical harm.

Moreover, the present traumatic event is experienced as a temporal unity in Husserl's sense that the "now" moment includes an anticipation of the embodied experience that is to come and a retention of the embodied experience just past.

This process of retention and anticipation contributes to an escalating feeling of terror that is integral to each recurring episode. Since each episode is a pre‑reflective originary experience (and not a recollection), it is important that therapeutic intervention is explicitly directed towards relieving the lived immediacy of embodied distress.

The experience of fear is a temporal unity in another respect. The present mo­ment of terror not only incorporates a reference to meanings derived from past experience ("last time I fell, I hurt my­self," or, in my own case, "since I take anticoagu­lants it is dangerous to hit my head") but fear is also future directed ("what will happen if this occurs?" "if I hit my head will I bleed into my brain," "what will my future state be now that this has happened?") Therapy must address the temporal meaning of the trauma, recognizing that this meaning will be differ­ent for each individual.

******

I have described my experience in some detail to emphasize that emotions are concretely embodied. Post‑traumatic stress disorder is not simply an illness that is "in one's head" as opposed to "in one's body." It represents a crisis of being‑in‑the‑world.  Living with this crisis has involved (and continues to involve) learning to reconnect with my body, to rediscover or remake the world as a habitable dwell­ing place and to pay explicit attention to deeply seated feel­ings.

REFERENCES

Sartre, J.P. 1948. The Emotions: Outline of a Theo­ry (NY: Philosophical Library).

Toombs, S. K. 1992a. The Body in Multiple Sclero­sis: A Patient's Perspective, in D. Leder, ed., The Body in Medical Thought and Practice (Dordrecht, the Netherlands: Klu­wer).

______ 1992b. The Meaning of Illness: A Phenom­enological Account of the Different Perspec­tives of Physician and Patient (Dordrecht, the Netherlands: Kluwer).

______ 1995. The Lived Experience of Disability, Human Studies, 18: 9-23.