A hospitalization diary
— Reviewed by
Hervé Guibert, Cytomegalovirus: A Hospitalization Diary. Translated by Clara Orban.New edition with an introduction by David Caron and afterword by Todd Meyers. New York: Fordham University Press, 2015. Paperback 96 pp., $19.95. ISBN: 9780823268573.
Cytomegalovirus – first published in 1992 and translated into English in 1996 – is the diary of the three-week hospitalization of Hervè Guibert, French writer, journalist, photographer, and important literary voice on the impact of AIDS in France. In this new edition, the relevance of this book is even more evident, thanks to the contextualization of Guibert’s work vis-à-vis the history of the AIDS pandemic provided by the introduction and afterword.
Written in 1990, shortly before the author’s death at the age of thirty-six due to AIDS-related complications, the diary consists of Guibert’s intimate observations of the hospital’s daily life while he was recovering from cytomegalovirus, a major cause of morbidity and mortality for HIV patients during the early days of the AIDS epidemic.
Whilst confronting his fear of AIDS as well as the cytomegalovirus that threatens him with blindness, Guibert remains a keen observer of hospital dynamics, accurately and critically recording the most intimate details of everyday life. He does this without explicitly relating his critical reflections to his particular status as a homosexual man living with AIDS. As the author acknowledges, writing this text – filled with humor, sentimentality, and complaint – was not only a way of giving ‘rhythm to time and a way to pass it’ (p. 78) but also a way of ‘preserving his humanity’ (p. 83). The influence of his friend Michel Foucault – ‘M.’ in the text – clearly surfaces in his criticism of the hospital as an institution of power and a battleground for supremacy. In this context, Guibert believed, respect was only attainable if equality was present. For this reason, during his hospitalization he would engage in extreme acts to achieve equal status with sanitary personnel in the hospital hierarchy.
In the introduction, David Caron draws the attention of the reader to emblematic passages in which Guibert emphasizes the importance of preserving his humanity. This was a crucial struggle, one that led Guibert to observe that the ‘hospital is hell’. His daily struggle for dignity is shown in the ways he copes with the poor hygiene conditions of his room – which, for an AIDS patient, presents a higher risk of contracting other diseases – as well as his constant requests for items that could ease his suffering (the table, the IV pole, the hep-lock). In the everyday minutiae, this sense of his struggle emerges even more powerfully. At first sight, for instance, his insistence on having two different spoons to eat soup and dessert may appear as whimsical, yet it expresses the key question: why should I be treated differently from you? This is also evident in his refusal to wear the transparent blue gown for a surgery: ‘The only way you’ll get me to accept it’, he tells the nurse, ‘would be to accompany me, in the same outfit, and I’ll authorize you to keep your bra, just as you authorize me to keep my underwear’ (pp. 55–56). Whereas the doctors were expecting a patient, they had to acknowledge a person. Here, clothing made the man.
As Caron points out, Guibert was often criticized by other French activists for describing his experience in a personal and apolitical way. However, we may argue that it is exactly his personal struggle to remain human and keep ownership of his own body and dignity – ‘you have to make them respect you’ – that is the strongest political act he could possibly have embarked on, at the end of his life.
The introduction to this impressive work also allows the reader to contextualize individual suffering within the history of AIDS. Caron highlights the totality and topicality of the problem through his personal story of seropositive diagnosis in the United States during the 2000s. For the author, AIDS is still treated differently from other illnesses insofar as prevention, rather than treatment, often remains the primary concern in American society. As Caron suggests, HIV is progressively being forgotten because nowadays society tends to ignore the existence of individuals infected by it. Moreover, rather than being treated as victims of a serious disease, these individuals are often ostracized. In this sense, the re-publication of this book is particularly important to reactivate interest in AIDS while remembering the history of the disease and the struggle of many individuals. As Todd Meyers writes in the afterword, through this short work Guibert has provided us with a precious reminder of an often-overlooked daily drama. Here lies the importance of reading such individual testimonies that emphasize the significance of being treated with care and dignity until the final moment.
In my view, Guibert’s testimony should raise awareness among organizations involved in the fight against AIDS about the more intimate sphere of suffering of its victims. During the period I spent working with people infected with HIV in Mozambique (2011–2012), I found that patients struggle for equality, dignity, and basic care in ways that Guibert did. The Mozambican health care system faces different challenges than did that of Guibert’s 1980s France – the system is stressed by decades of war and structural adjustment policies, rather than a new, unknown infectious disease – but the consequences for patients are similar. Management of chronic disease is not a high priority, and despite availability of prevention and treatment programs, people have difficulty accessing them. In many cases, patients died from AIDS-related complications while being deprived of basic care. Guibert’s story focuses on the importance of everyday, basic care for the dignity of those dying.
To conclude, the new translation by Clara Orban is clearer and allows for a more flowing reading, making the book accessible to graduate students in anthropology, health workers, and the general public.
About the author
Francesca Cancelliere is a psychologist and a PhD student in anthropology at the Institute of Social Science at the University of Lisbon. She studies themes related to activism and stigma about HIV/AIDS in Mozambique where she has worked with NGOs for more than two years.