Mary Ellen MacDonald
Come autumn, I spend a lot of time thinking about ghosts.
The fall marks a number of deathiversaries for me. Ten years ago, I missed my young daughter’s Halloween excitement because I was on a train to the funeral of the mother of Nadia, my best friend. Nadia’s mother had to be removed from life-support after a fall in a nursing home. Then, a few years later, the doorbell of trick-or-treat-ers pierced the silence of own my family’s grief, raw after my mother’s death from ovarian cancer. And last fall, the day after the memorial service for Nadia, dead at 48 after three decades with Wegener’s Granulomatosis, I had to bury my 16-year-old cat.
What do the bereaved have left, after the death? Memories, certainly. But what is memory? When I walk by someone wearing Chanel No5, I’m a child again, ready to wrap around my mother as she leaves for an elegant evening with my father. When my cat died, my arms ached for the phone to call Nadia, the only person who really could comfort me. Our bodies remember and enact our grief.
We also have the magical thinking that journalist, Joan Didion, wrote about after her husband’s sudden death. Didion resisted throwing out his shoes because he might need them when he came back. I have had those magical moments. Even now, six years after my mother’s death, I still keep her shoes. However, I no longer keep them because I know she will need them; I keep them because the space her absence takes up is a space that I want to protect and maintain. What do the bereaved have left, after death? We have the “presence of absence” (Bille, Hastrup, Sørensen 2010) of our loved one. That is, we have their ghosts.
For over a decade, my research in pediatric palliative care has questioned normative models of grief. My team’s interviews and internet-based research have uncovered how bereaved parents endeavour to keep their deceased children present in their daily lives. In one of our studies, a mother told us about a rabbit who hopped through her yard, stopping at the back window to look in. This rabbit was her deceased son, she told us, checking to make sure she was okay. When the neighbour’s child came to shovel her snow, she knew he was sent by her son. In another study, bereaved parents used the technologies of Web 2.0 to create virtual neighbourhoods in which they could set up playdates for children in Heaven, and through which they could implore their deceased children to wear warmer clothing when the seasons changed.
In our hospital-based study, a mother described to us her experience at the children’s hospital memorial service commemorating deceased patients. During the service, a candle was lit in memory of each deceased child. This mother watched carefully for her child’s candle to be lit. But, despite the chaplain’s best attempts, it simply would not light. “I can just see her. This was [her] personality. I can just see her…” she laughed. At this point in the interview, the mother was making a blowing sound, pretending to be the child – her “little trickster” – blowing out the candle. Her child was with her at the service, with one last trick.
These stories disclose how the bereaved are comforted when they keep their ghosts nearby. By ‘ghosts’ I am not referring to popular horror film depictions of the paranormal, nor to religious idioms of spirit or soul. I am drawing on Avery Gordon’s sociology of haunting to think about “ghostly matters” as signifiers of what is missing and what must be examined. I depart from Gordon, however, in that I am not focused on haunting; instead, for me it is the ghosts themselves who are of interests, and especially their presence in the holes left behind by those absented, the deceased.
Our normative grief models try to force the bereaved to give up these ghosts. Our scientific paradigms beget the methods we use to produce knowledge, and these paradigms and methods favour the empirical. Our science is “hyper-visual,” as Gordon puts it. We have a bias towards an ocular epistemology. In other words, we really do need to see it to believe it. And ghosts, we believe, we cannot see.
Every view literally and metaphorically obscures other ways of seeing and knowing. My work asks: What harm may be done when we delegitimize what our frameworks will not allow us to see? Through our positivist lens, these ghosts must be explained away as ‘attachment bonds,’ and pathologized into different kinds and stages of grief. In so doing, I worry that the ghosts are erased and silenced.
And yet, the bereaved insist on keeping their ghosts nearby. To do so, they must stay outside the gaze of professionals and other naysayers. Unfortunately, this can have costly results with many bereaved parents living in entrenched social isolation. One mother described how she would close the door to her deceased child’s bedroom when outsiders came into the house, so that she didn’t have to explain – and deal with the judgement and incredulity – that the bedroom is still inhabited by the presence of her child. She also described the pain of watching her neighbours cross to the other side of the street to avoid having to speak to her. It was like she felt contagious while the neighbours gave their own little prayers: There but for the grace of God go I. Another parent spoke of how her family physician insisted she start taking medication to still her ghosts: “But I want to feel the pain!” she told us. In one of our studies, we heard stories of how an Indigenous community kept their grieving practices hidden from colonial authorities.
It is no wonder many bereaved create their own peer-led support groups for help. Choosing who is in ‘the club’ allows the bereaved to keep the ‘grief police’ out (Walter 2000). Grieving is an intimate lonely affair, by definition. For bereaved parents, social stigma and insensitive grief therapy models can compound this isolation. Sometimes I think they feel that their ghosts may be all they have left. They give their ghosts intimate space in their lives and homes, and these spaces can be deeply embodied. Communications scholar, Paige Toller, writes of a father who walks differently now that he is bereaved: “Lots of times, walking through a store, I make room for her beside me, as I’m walking and I share the moment as if she was there. I kind of feel like she’s there, so you know, I make that adaptation” (Toller 2005, p.57).
The bereaved know how comforting ghosts can be. I imagine that the fall will forever have a certain pall for me. Autumn, falling leaves, Halloween, dark afternoons. But I’ve got my ghosts, and they’ll keep me comforted.
Bille M, Hastrup F, Sørensen TF. An Anthropology of Absence: Materializations of Transcendence and Loss. Springer; 2010.
Gordon AF (2008). Ghostly Matters: Haunting and the Sociological Imagination. Minnesota, USA: University of Minnesota Press.
Toller PW (2005). Negotiation of dialectical contradictions by parents who have experienced the death of a child. Journal of Applied Communication Research, 33(1), 46-66.
Walter T (2000). Grief narratives: The role of medicine in the policing of grief. Anthropology & Medicine 7:97-114.
Hordyk SR, Macdonald ME, Brassard P (2016). End of Life Care for Inuit Living in Nunavik, Quebec. Montreal, QC: Nunavik Regional Board of Health; 2016.
Macdonald ME, Liben S, Carnevale FA, Rennick JE, Wolf SL, Meloche D, & Cohen SR (2005). Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics, 116(4), 884-890.
Mitchell LM, Stephenson PH, Cadell S, & Macdonald ME (2012). Death and grief on-line: Virtual memorialization and changing concepts of childhood death and parental bereavement on the Internet. Health Sociology Review, 21(4), 413-431
Mary Ellen Macdonald is a medical anthropologist at McGill University, Montreal, Canada, where she is an Associate Professor in the Division of Oral Health and Society, Faculty of Dentistry. She is Program Head of the Palliative Care Research Program at the Montreal Children’s Hospital where she did her postdoctoral training. Her research program in pediatric palliative case focuses on socio-cultural analyses of child death and parental bereavement. She is currently working with a Canadian team (led by S Cadell) exploring meanings and practices around memorial tattoos. She is also a member of an Expert Panel exploring Medical Assistance in Dying legislation for mature minors, commissioned by the Canadian Parliament.
Ninoska Enriquez, PhD Student, Division of Oral Health and Society, Faculty of Dentistry, McGill University