Practicing an ethic of care on Twitter

When I was researching an article on caring about, for and with women who’ve had abortions in late 2011, I started coming across various sources that discussed how people are using twitter for health care. Then, last December, I found an article on Jezebel about Xeni Jardin and how she was live-tweeting her first mammogram. During the live-tweet, she was diagnosed with breast cancer. I marked the article on my Safari Reading List and promised to come back to it after I finished my article on live-tweeting abortion. This morning, I came across a tweet by Maria Popova that reminded me of Xeni Jardin’s use of twitter and her current situation living with breast cancer.

I checked out her twitter feed and found that she has continued to tweet about her experiences. I decided to create a storify in which I archived many of these tweets. The last tweet I archived was particularly striking to me:

Since I’m thinking a lot about cancer this week (with my mom’s birthday yesterday; she would have been 70 if she hadn’t died from pancreatic cancer in 2009), I was particularly moved by her tweets and her efforts to make some sense out of her cancer and to provide others with care.

She tweets a lot about chemo and her experiences going in for treatment. I only accompanied my mom once in her second round of chemo–the round that really ravaged her body and eventually killed her. Would she have appreciated a network of others experiencing the same thing on twitter? Probably not; she didn’t use social media much. But I think having access to more information and insight on how people experience cancer and chemo might have helped me to connect with her more in those last few years.

I think my mom might have appreciated one aspect of Xeni Jardin’s social media ethic of care, her Pinterest board. Ever since I first saw Pinterest, I thought my mom would have enjoyed it. Here’s a board that Jardin is experimenting with in the documenting of her experiences living with breast cancer.

 

The 3 Judiths

If you have been following my blog recently, you may know that I am currently writing about my experiences of working through/making sense of/troubling my mom’s illness and recent death from pancreatic cancer. This entry is the third in a series (here are part one and part two) in which I document my writing/thinking process. In the second part I wrote about my plan (which was developed as I was writing that entry) to expand my manuscript beyond living and grieving with J Butler to include two more Judiths–my mom, Judith Puotinen and my daughter, Rosemary Judith Puotinen. Since then I have been writing (first in word and now in Pages on my iPad) my manuscript (to be submitted for consideration in one journal’s special issue on mothering, grief and loss). Here is what I wrote yesterday afternoon and this morning:

In many ways, Judith Butler has been a part of my living with and grieving beside my mom. It is not so much that her work has comforted me (although it has), or allowed me to fully make sense of my mom’s illness and death (what could, really?), but that her work has always been a part of this process for me. When my mom was diagnosed I was reading and writing about Precarious Life. When my mom died I had just completed but was unable to give a presentation on Butler, Undoing Gender, and the virtue of staying in trouble. And for much of the time in between those years of diagnosis and death I was reading and thinking about Butler in relation to my own ideas about making and staying in trouble.

But just as Judith Butler has been a part of my living and grieving beside my mom, my mom and her terminal cancer has been a part of my living and grieving beside Judith Butler. My reading of, and subsequent teaching and writing about, Butler has been informed in many different ways by my mom, her illness and my experiences of struggling with her impending death. When I was in the waiting room as my mom’s tumor was being removed and I was writing about the livable life, I wasn’t only thinking about how Butler’s articulation of the livable life would shape my ideas about what was happening to my mom (and to me and the rest of my family); I was thinking about how what was happening to my mom would shape my ideas about Butler’s articulation of the livable life and her larger project about grief. My mom, and her experiences living with and dying from pancreatic cancer powerfully shaped how I read and think about grief and life and the ways in which loss and life undoes us.

To complicate this even further, my living and grieving beside Judith Butler and Judith Puotinen, have been shaped by my experiences as the mother to a third Judith, Rosemary Judith Puotinen. Throughout the past four years my daughter was beside me. I was pregnant with her when my mom was diagnosed with stage four pancreatic cancer and while I was writing my dissertation on Butler. I was breastfeeding and staying up with her almost every night while my mom was recovering from her first round of chemotherapy and as I was teaching about the ethical turn in Butler’s work. I struggled with her frequent (and very typical for a three-year old) “I hate yous” while my mom started falling down too much and as I taught a graduate class on grief and being undone in Butler’s Undoing Gender. And I marveled at her feisty and troublemaking spirit while my mom’s weak body revolted against her almost (but not quite) indestructible spirit and as I began writing about the virtue of troublemaking and troublestaying for an upcoming presentation and on my blog.

…And here is one more excerpt from that same manuscript:

This essay is an experimental attempt at juxtaposing my experiences of living and grieving beside three different Judiths: my mom, Judith Puotinen; my academic subject of study, Judith Butler; and my daughter, Rosemary Judith Puotinen. The purpose of this essay is not to connect these experiences or my narratives of them in any easy or seamless way, but to put them beside each other in the hopes of presenting one person’s tentative and unfinished account of grief, loss, motherhood and the livable (and not so livable) life.

BEING BESIDE: AN ACCOUNT
I will use the notion of beside to organize my juxtaposition of these various narratives. But, what do I mean by beside and how does it speak to my own experiences with my mother’s diagnosis of and death from pancreatic cancer? Perhaps the most obvious way in which to understand my use of beside in this essay is this: Throughout the past four years (the liminal years in-between diagnosis and death), all three Judiths have been a central part of my life. They have literally been beside me, and beside each other, as I have struggled to make sense of and endure grief and impending loss. My engagements with each of these three Judiths occurred at the same time, all in the span of these four years. I was reading and writing about Butler’s notions of grief and the livable life at the same time that I was witnessing both my mom’s awe inspiring display of resistance to and persistence against death and my daughter’s insatiable (and infectious) desire for life. All three of these Judiths–Judith, the author of Undoing Gender; Judith, the mother struggling for a livable life and against death; and Rosemary Judith, the daughter filled with joy and the desire to engage with life–happened in the midst of each other and in the midst of my own engagements with them.

Beside suggests more than the literal meaning of being next to or in the midst of, however. I am currently experimenting with some other meanings of beside and how they might help me to organize my thoughts and this essay. Here are a few other ways I want to think about the beside in my title, “Living and Grieving Beside Judith”:

  • to display intense or excessive emotion, to be beside oneself with grief
  • to keep vigil or persistent watchful care over someone or something–to always be beside or along side of
  • to be next to but not the same as, to exist alongside someone or something that is in proximity to you but to whom you are not reducible
  • to be in addition to, to function as a break from, to be to the side of
  • to be at the edges of something, to be alongside of it but not fully inside or outside of it