Narrative Inquiry in Bioethics

It all began gradually about five years ago: the diagnostic tests, the acetylcholinesterase inhibitors, the prognosis, the inversion of my role as her daughter.

I expected most of these things from her diagnosis. As a healthcare practitioner, I knew to expect the embodied consequences of amyloid plaques and neuronal degeneration.

But I did not expect the embodied lessons on love that my mother would teach me over the next several years.

In caring for my mother and watching her progression of Alzheimer's disease affect her speech, I have learned that while my mother can no longer speak of love, she communicates it to me every day. Her love is embodied in unexpected smiles, laughs, brief glances, and momentary eye-contact. Her love is communicated through the nourishing gestures of feeding and being fed, of bathing, and being bathed. Her fundamental kindness is expressed in her gentle disposition and these habituated bodily gestures. Since we are no longer able to communicate verbally, I pay much closer attention to her body now.

I look at the lines across her face and think about how I never noticed them before. I never really took time to notice her hair, her skin, her eyes, her legs, her feet. And now I can't stop noticing. Without words to dictate my impression, I rely on her body for signs of comfort. And I wonder, was she comfortable before? What have I missed in my overreliance on her mind as the site of her self?

We often rely too heavily on conceptions of the self that privilege cognition over the body, as if the mind is somehow separable from our bodies as we live them. My mother is no longer able to articulate a sense of who she is, but she exhibits familiar characteristics that I recognize as fundamentally her, as fragments of herself that still exist and often show up as bodily memory. This bodily memory is offering me food when I am feeding her, running her hands through her hair to help me wash her, reaching out to me across a table, catching my eyes, and smiling suddenly, fleetingly. In these moments, she reminds me to stop being a disembodied body, to check in with the bodily aspects of our relationships with ourselves and others. I hold on to these embodied fragments of my mother, but I cannot pretend that I decipher them fully. Nor can I ever claim to speak for her, only of her. And I am often left wondering [End Page E17] what she would say if she still used words rather than this vocabulary of movement.

Kristin Zeiler's analysis of embodiment in dementia care has been essential in helping me think through my experiences. Writing about them, however, has been another challenge. I struggle so much with language in writing about Alzheimer's disease. I use the word "recognize" above, from the Latin recognoscere, to 'know again, recall to mind,' as well as the word "remind." Surely knowledge and memory are not relegated to the mind. The limits of our language highlight how difficult it is for us to conceive of concepts like our sense of self and memory as embodied phenomena. There must be a better way to talk about this. Alzheimer's disease shows us that the self is embodied, even if this self only comes to us in fragments.

More recently, I have begun to imagine that my mother's fragmentation is the result of her newfound ability to move seamlessly between the present world and a future world in which neurodiversity and disability are valued as integral aspects of human experience. This future world is reminiscent of what Alison Kafer refers to as the elsewhere-elsewhen in her work, Feminist, Queer, Crip. We place so many normative demands on our cognitive and bodily abilities that it often prevents us from treating ourselves and others with compassion when we cannot meet these demands. In the early stages of her diagnosis, I remember how nervous my mother used to get ordering meals at restaurants or asking others for assistance. She would often forget her request halfway through and become...