Waiting, strange: transplant recipient experience, medical time and queer/crip temporalities

Abstract

People who receive a ‘solid’ organ transplant from a deceased person may experience imaginative challenges in making sense of how the transfer impacts their own past and future, as shown in existing scholarship. Building on such work, this article considers how the temporalities of medical encounter itself may also become temporally ambiguous, posing representational challenges both pre-transplantation and post-transplantation. The dominant narrative of transplant in transplantation journals and hospital communications, both clinical and patient-facing, presents surgery as a healing moment, yet the recipient’s experience of hospital, pharmacology and daily self-monitoring may be disorienting in multiple ways which resist conventional conceptions of medical temporalities of cure. Examining memoirs by Robert Pensack and Richard McCann, this article suggests the transplant temporalities may be fruitfully approached through scholarship of ‘queering’ time and ‘crip’ time. While the medical narrative of transplant focuses on the event of transplantation, these texts construct post-transplant time as still profoundly structured by waiting, expectation and suspense, the transformed body less healed than permanently contingent and fragile in different ways. I do not purport to uncover the ‘truth’ of bleak survival hidden within a story of the miraculous. Rather, I am reaching for a critical practice to recognise subtle entanglements of medicalised time, and identify a tension and synthesis between miracle and the chronic, an insight which may also be of service for other critical approaches to memoir of heroic medicine.

Perspectives of Kidney Transplant Recipients, Transplant Candidates, and Living Kidney Donors on the Role of Patients’ Self-Narratives and Experiences of Creative Writing Workshops: A Qualitative Study

“…We have demonstrated that significant moments in the transplant or donation journey are multiple, highly emotional and associated with uncertainty. As shown by Wasson, the transplant experience does not correspond to medical temporality, where the procedure is described as a “healing moment.” 28 Transplantation is characterized by a non-linear temporality, “post-transplant time as still profoundly structured by waiting, expectation and suspense, the transformed body less healed than permanently contingent and fragile in different ways.” 28 As our participants reported, the experience is also perceived as lonely. We can assume that the high intensity, uncertainty and loneliness of the lived experience of transplantation or donation lead to a search for experiential learning and support from the self-narratives of peers.…”

“…As shown by Wasson, the transplant experience does not correspond to medical temporality, where the procedure is described as a "healing moment." 28 Transplantation is characterized by a non-linear temporality, "post-transplant time as still profoundly structured by waiting, expectation and suspense, the transformed body less healed than permanently contingent and fragile in different ways." 28 As our participants reported, the experience is also perceived as lonely.…”

“…28 Transplantation is characterized by a non-linear temporality, "post-transplant time as still profoundly structured by waiting, expectation and suspense, the transformed body less healed than permanently contingent and fragile in different ways." 28 As our participants reported, the experience is also perceived as lonely. We can assume that the high intensity, uncertainty and loneliness of the lived experience of transplantation or donation lead to a search for experiential learning and support from the self-narratives of peers.…”

Psychological care of patients during the pancreas transplantation process: issues and prospects

“…Whilst the pre-transplantation evaluation phase is often experienced as a particularly exciting, dynamic and constructive process, the concretization of the therapeutic plan in the case of eligibility is often followed by a period of distress. The indefinite period of waiting for the operation, feelings of impatience, discouragement and anxiety, including worries about the donor’s death, the graft’s engraftment and the necessary post-transplant medical regimen, create uncertainty and raise questions about the healing effect of the transplant ( 31 , 32 ). Communicating these concerns and uncertainties to members of the transplantation team is often hampered by patients’ fears that such discussions will affect their eligibility for transplantation ( 33 ).…”

Jean-Luc Nancy and the Hospital: Imagining Clinical Environments of Strangeness and Multiplicity

“…For Wasson, Nancy's L'Intrus moves beyond a linear narrative of illness and cure in that it '[conveys] the unfinishedness of transplant'. 26 Wasson explores how the patient's experience of time and of waiting involved in transplant results in the space of the hospital itself becoming warped: 'the times of medical intervention, too, may become strange. Recipients' experiences of hospital, pharmacology and daily self-monitoring may be disorientating and resist conventional conceptions of temporalities of cure'.…”