The Shape of Care

A Phenomenological View of Living with Illness

My philosophical preference wasn’t popular in grad school. The field of philosophy had become more specialized, as all disciplines have, and the name of the game was dissection, disaggregation, break down structures into their granular components and figure out what those things are. Can we rebuild the whole from the summation of the particulars?

Here’s an example, and I can already hear my wife rolling her eyes. Is this a table, or are these atoms arranged “table-wise”? What would it mean to understand solid objects as an organization of their atomic pieces? The analytic philosopher takes this a step further, and they may wonder, maybe there’s not even the “stuff” of the world at all, but we perceive how things are bound by relations and that’s what makes them “real.” Imagine a net, or a spider’s web, the organization of the thing seems to give it its shape, structure, and capacity to catch and sustain flying insects for the spider’s dinner.

Molecular bonds, structures, and the physical laws that govern them—that's the real 'stuff' of the world. What we perceive as 'medium-sized dry goods' are no more, and certainly no less, than intricate and definable relations binding the small things together to form the large.

Does your head hurt?

Think of the table that supports the laptop onto which keys I press. We call it a table, sure, because in our taxonomy, in our experience of the world, given our sense perception and the narrow  band of visible light spectrum that we take in and process as sight, it’s useful for us to call this thing a table.

A fly would likely not so name it, should flies be able to name things.I guess that doesn’t make us wrong or the fly correct, it’s simply that we take it all in as sense data. But it's our lived experience that has always truly captivated me, getting us closer to my interests.

Sure, atoms, springs, quantum fields, whatever, those things are super cool and interesting to learn and speak about. I had fun writing these few paragraphs, likely more fun than you had reading them! But our lived experience? That was always what drew my attention.

Phenomenology is the study of sense of experience as a medium through which a person relates to the world. It’s not a structural treatment of vibrating springs in a quantum field. Phenomenology is the way my left foot tingles as though it is asleep because the tumor in my right parietal lobe presses on the somatosensory cortex. See, here again, like the table and its constituent parts, we have a mechanical story available to us about neural pathways and the brain’s processing ability, but the real story, as far as I’m concerned, is the tingling, the weakness, the missteps, the stubbed toes, and the foot drop.

My story is about the rails our friend welded and drilled into the bricks leading up and down the stairs leading from exits in our home to the outdoors. That could be a story about small things bound by structure, but for me, it's about the freedom and safety they offer, and the ability of a friend to manipulate a physical world, extending from their inner life.

What this post is, is a story about my ability to type at this desk, look at the Rose of Sharon bush off our back porch, and the mama bird that was happy enough to build her nest on an outdoor ceiling fan blade after we removed her nest from a ladder in the back last year.

Imagine a tree in your yard–hell, look at one, if you’re near a window. That tree looks like something to you, but it does more than look. It may stir up emotions; memories. Do your kids climb that tree? Does it offer shade where you sit and read in the summer? Look closer, the tree does something else, too, or you do, I’m not sure which. You may find yourself thinking about how you fit to the tree. Phenomenology, when you’re locked in, as our thirteen year old says, “Let him cook, chat,” presents itself to you in a way that you imagine yourself grasping it, leaning on it, resting against it.

Phenomenology isn't just what you experience, but how you lean into that sense experience, acknowledging that the world isn't merely 'atoms arranged table-wise,' but a reality you actively create and shape through your engagement.

Your senses give the world a shape.

The world is the world to the squirrels, bees, birds, chipmunks, and leaves, but you shape it into something that has a lesson for you.

The shape of care gazes upon the suffering and finds a shape that you create with the scene you observe. Without you, the scene exists as it is, likely still in pain, grief, and suffering, but with you, it is not grief arranged people-wise. Your dedication to witness is a movement toward suffering. You fit yourself to it. But it costs you. It is painful, distressing, even coercive at times to bear witness to a scene that forces you to move. You could look away, but you sense that your witness is a type of honoring.

The tree does not need you to rest against it, but when you do, you’ve managed to create a union between two independent systems. You acknowledge and the tree responds. You say, my care and your existence introduce new possibilities in experience.

What if we were to gaze upon each other as independent systems that hold potential for new possibilities in experience.

We had people over to recognize my nine-year anniversary (craniotomy + anniversary), and those gathered bore witness to my suffering, brain tumor more advanced, impairments worsening, an undercurrent of distress dotting my i’s and crossing my t’s. And around the porch where we gathered, we fell into the possibility of deeper relation–not between our granular pieces, but through the form we make gathered together.

That is the shape of care.