Ellen has been sleeping away the hours, in the wheelchair, in the rocking chair, and on her bed, the bedroom couch, the office couch, and even her mom’s bed. When she’s awake, she’s often up and about, traveling in the manner we’ve previously described but no longer packing up. She’s also talking a lot less and we miss her wit. In addition, she came down with some kind of infection yesterday, with swelling, redness, and pain on the right side of her face and neck. The doctor, nurses, and Eric are trying to figure out how best to keep Ellen comfortable in the face of this new development.
Last winter, Ellen began asking her dear friend and colleague Shivani if she would be Ellen’s “death midwife.” During the spring, Shivani queried Ellen on what she imagined a death midwife would do. Ellen didn’t provide much guidance, but Shivani has done an incredible job feeling her way into this role. She creates and holds sacred the space around Ellen, she lifts up the beauty she sees in Ellen even as illness wreaks havoc on her body, she provides hands-on care of Ellen’s body, she prepares her emotionally for dying, she helps ease Ellen’s journey in any way she can, and she comforts and assuages fears and guilt not just for Ellen but for all of us. She is guiding Ellen’s way out of this world the way she guides many babies into this world. It’s so interesting to hear her and other midwives speaking of the similarities they notice in these two life passages. Early this morning, Shivani wrote:
… Yes the absence of her wit is different. I was just thinking how challenging it is that most of what she has to say is in some defense of her body. Don’t move me… No that way… Can we just wait a minute… I want so much for her to die feeling loved and held. But as with birth, and most things, sometimes it is our job to merely be witness and quietly shine our hearts like a steady light.
Ellen would want to provide you with more resources on this topic of death midwifery, but there’s not much available yet in the U.S. culture. More common is the death doula role – see Dying is hard. Death doulas want to help make it easier.