By Flore BRUNET (M2 PEADID)
In this article, I would like to share a book that I recently read: Le courage des lucioles (literally “the courage of fireflies” in English). Itis an autobiographic story of Muriel Derome, psychologist in the pediatric intensive care unit of a Parisian hospital. She describes her arrival on the team, the place that she had to find and assert with her colleagues and her experience over the years. She tells about many cases of children or parents that had mark on her. It’s a book very concrete and accessible which helps to get a better idea of the job of psychologist in intensive care unit and with children in palliative care, through the interviews with families and the medical team.
It is easy to identify with the author from the first lines because she explains that she became in hospital, at her first day, with a knot in her stomach. She had the feeling that she was not credible, as we can all think at the dawn of our entry into professional life. Moreover, she was entering a world of which she knew little about, with a specific vocabulary and which is very intimidating because of beeps, machines, pipes, perfusions … It was hard for her to make a place among the team because they didn’t see the interest of psychology in this kind of service and that job did not exist at that time. The intensive care was considered as “the place of body, not psyche” (p25). She has been taught that her work can only begin if there is a request while in this unit, parents are often too disoriented to think to demand anything to the psychologist.
Her first case was a mother and her little boy who was in coma following a car accident. The father and the little brother died instantly. Ms. Derome worked with the mother on telling the truth about the accident to her son, even though he was in a coma. The doctors were against this idea, they thought it would be negative given the child’s condition. The mother decided at one point to do it anyway because she could no longer carry the weight. She told her son everything and soon after, he woke up miraculously. Many factors are involved in this awakening, it would be naive to believe that only the fact of having told the truth was decisive for the coma’s recovery. But this event marked the beginning of the psychologist’s career within the department and throughout the book, it is this notion of truth that emerges and acts as a guiding principle. It can be noted that in many of the situations described in the book, in which the truth is masked, people find themselves faced with a blockage. A girl who is slowed down in her school learning because she feels something is being kept from her (her mother had cancer but didn’t tell her about it). Parents who refuse to tell their child that she/he is going to die…For example, that girl who, because of a tumor, lost the ability to speak, walk and then breathe on her own. She fell into depression and attempted suicide because she felt that doctors and her family were avoiding her on the issue of death, even though she was aware of her situation and wanted to talk about it.
The psychologist’s job is often to get parents to listen to their children and not hide the truth from them. This also applies to siblings. She often works with siblings of hospitalized or deceased children, as parents do not always know how to approach the subject. Here again, she recommends never lying by omission and to try to have simple words, up to the level of children. When the brother or sister has died, she advises not to use too many metaphors and to explain as well as possible the irreversibility of death and the burial process. She recommends not comparing death to sleep, at the risk of disturbing the child and causing sleep disorders, and always stressing that brothers and sisters are not responsible for the child’s death, because they often tend to imagine that if they had been nicer, for example, things would have been different.
She tells of accompanying a boy to the morgue one day so that he could say goodbye to his little sister and see her one last time. She explains that this situation is not as strange as one might think, that children often represent death in a much more monstrous way and that when they confronted with reality, it helps them to de-dramatize what they had imagined.
Death is not the only theme addressed in this book and the author endeavours to show that it is not death that dominates in an intensive care unit but life. The strength of the children who live there, their ability to perceive optimism and hope as soon as they present themselves are very well described through the situations that are told. She relates the possibility of re-establishing attachment ties between a mother and her daughter, which was significantly damaged by the latter’s accident. On the other hand, her story highlights the remarkable work that medical team can do when they work together. She also recounts the first worrying information she had to provide and her subsequent appearance in court. Indeed, the medical team discovered that a child was being abused by his mother, who was forcing him to swallow pens and other things. This boy was covered with small wounds. As the psychologist was the first to whom the child confided, she was forced to testify at the trial.
In summary, Le courage des lucioles is a poignant and realistic account of the professional career of a psychologist working in a pediatric intensive care unit. It is difficult to synthesize it because all the situations described are important and touching. It is a good complement to theoretical learning because it opens a window on the reality of the profession and the hospital world and also allows us to make links between the cases presented and our academic knowledge.
Words I have learned:
- knot in her stomach: avoir la boule au ventre
- at the dawn of: à l’aube de
- guiding principle: fil conducteur
- burial: enterrement
- endeavours: s’efforcer de
- appearance: comparution
- swallow: avaler
- wounds: plaies