When Words Fall Short
I often think about how we all experience pain in different forms, and yet can never quite explain what we feel with complete accuracy. Pain is deeply difficult to communicate. When you are burning with fever, there is no way to fully share with someone you love how much it hurts. When a child falls and scrapes their knee, their parents cannot take on that pain for them. When chronic pain becomes part of a patient’s life, a doctor may empathize, but they can never fully know what it feels like to inhabit that particular body.
In The Body in Pain, Elaine Scarry captures this gap between experiencing pain and hearing about it when she writes, “to have pain is to have certainty; to hear about pain is to have doubt” (13). For Scarry, the difficulty of communicating pain is also a difficulty of believing it. We know our own bodies with a kind of certainty that we can never extend completely to another person. We can listen, empathize, observe, and imagine, but there is always a distance between what someone tells us about their experience and what we ourselves can know.
I found myself thinking about this tension while listening to Dr. Naila Kuhlmann’s Art/In Forum talk, In Vitro & In Vivo: Bodymind – Working at the intersection of circus and neuroscience. Over a hundred people around the world signed up for Dr. Naila Kuhlmann’s In Vitro & In Vivo talk on Bodymind. The following is a reflection on the session. For those who missed the talk, you may wish to review this PDF takeaway.
Kuhlmann’s work with Parkinson’s disease began in a traditional ‘wet lab’ environment, conducting laboratory experiments in neuroscience. Eventually, her inquiries led her toward a different question altogether. Rather than asking only what Parkinson’s does to the body, she began asking, what it is like to live with Parkinson’s?
What does the disease feel like from inside the body? And what kinds of knowledge become possible when we take that question seriously?
That shift stayed with me because it suggests that the problem may not simply be that we lack the right words. Perhaps some experiences require us to rethink what we mean by communication and even by knowledge itself.
This became particularly apparent in learning about the project, Piece of Mind, where movement became both the subject and the language of the research. People living with Parkinson’s worked alongside artists, researchers, and caregivers to develop choreography from the movements associated with the disease. Those living with Parkinson’s were not simply subjects whose experiences were being translated by others. They helped shape and revise the choreography according to their own understanding of how their bodies moved and responded to symptoms.
During a Zoom session with collaborators, Kuhlmann recalled a participant reflecting on the experience of watching everyone move and realizing that they “no longer knew who had Parkinson’s.” That moment struck me. The distinction between researcher and participant, patient and observer, became less certain through movement. No one had suddenly acquired the embodied experience of Parkinson’s, but something had nevertheless become perceptible to one another that could not have been communicated through explanation alone.
I kept thinking about what it means to recognize something in another person without fully knowing it.
Kuhlmann described this approach through the idea of a “symmetry of ignorance”. Everyone involved brought some form of expertise, but everyone also encountered things they did not know. Someone might understand Parkinson’s through their own body, another through research, another through performance, and another through caregiving. No single person possessed the complete picture. Instead, the process became a shared attempt to make sense of something that could not be fully understood from any one position.
This feels especially important in medical research, where expertise can so easily become hierarchical. The clinician may have a scientific understanding of the disease and the literature, but it is the patient who knows what it feels like to live with it. Scarry writes about how physicians can come to treat patients as “unreliable narrator[s]” of their own bodily events, noting that when the patient’s voice is bypassed, we “by-pass the bodily event, to by-pass the patient, to by-pass the person in pain” (7). Dr. Kuhlmann’s collaborative approach challenges this hierarchy by treating lived experience as a form of expertise in its own right.
Her project Living Rooms: une pièce partagée pushed this question further through immersive artistic and technological experiences. Using the prompt, “if my body were a house…”, participants were invited to think about the body not simply as an object of medical knowledge, but as a place in which experience, identity, and relationships unfold.
One element involved The SymPulseTM (Klick Health) tremor-simulating armband, allowing people without Parkinson’s to experience something resembling a tremor in their hands. Of course, a simulated tremor cannot reproduce Parkinson’s, or the uncertainty, involuntariness, fatigue, frustration, or accumulated experience of living with the disease. Yet I found the imperfection of the simulation interesting. Perhaps its value is not in making someone else’s experience fully accessible, but in creating a small disruption in the distance between knowing about an experience and encountering something of it.
This brought me back to Scarry’s observation that pain “either… remains inarticulate or else the moment it first becomes articulable it silences all else” (60). If, as she writes, “the most crucial fact about pain is its presentness” (9), then perhaps the challenge is not to find a perfect translation of another person’s experience. There may be no such translation. Instead, the challenge is to create conditions in which another person’s experience becomes harder to dismiss.
Kuhlmann’s discussion of a sub-project in the ongoing art-science-community initiative “Diagnostic Imagings” offered another way of thinking about this problem. Metaphors can constrain how we understand illness, shaping the narratives through which bodies become legible. But they can also create bridges between forms of knowledge that otherwise remain separate. I was especially interested in the possibility that metaphor might allow clinical knowledge and lived experience to move toward one another without requiring either to become the other.
This raises a question that seems larger than Parkinson’s disease. How can patients communicate what is happening inside their bodies when the language available to them does not quite capture it? And how might clinicians learn to listen for forms of knowledge that do not arrive in the vocabulary of diagnosis?
The questions from the audience extended this conversation, particularly around whether performance and embodiment might have a place in medical education. I found myself wondering what it would mean for doctors to encounter these forms of knowledge before entering clinical practice.
What stayed with me most from Kuhlmann’s talk was the possibility that understanding another person does not always begin with finding the right words but with recognizing the limits of our own knowledge.
We cannot take another person’s pain into our own bodies. We cannot completely inhabit another person’s experience. There will always be a distance between what someone feels and what another person can know. But perhaps that distance does not have to mean disconnection. Movement, metaphor, performance, technology, and shared creative practice can create new ways of approaching one another across it.
The goal is not to eliminate the distance between bodies, but to become better at meeting each other there.
Leave a Reply