How to measure the desire for infinity? The quality of life
It will have happened to you, too, to feel the shock of meetings like this with Pierre Mertens, who in speaking of his daughter born with spina bifida (the pediatrician declared she was doomed to live only a few hours), says with a big smile: “… The most beautiful thing I that has happened to me in life is my daughter Liesje.”
Witnesses like this make us experience at one and the same time a deep joy and a strange disquiet: real joy, of the kind that makes you live in the instant after looking differently at your anxieties and fears. But at the same time disquiet because it undermines what we do day in day out. If this is life, and we feel that it is true life, arduous yet corresponding to the essence, then why do we give it so little space in the laws that we pass, in the decisions we take and the acts we perform every day? Why do we continue to let our hands, hearts and heads be possessed by a superficial appearance that seems overwhelming but is insufficient and ultimately inadequate to the infinite desire of man?
The exhibition stems from an attempt to accept this provocation not only personally but also in our medical work. Everyone recognizes that improving the quality of life is an integral part of medicine, yet today in the name of a purported inadequate quality (compared with what?) the most inhuman actions are perpetrated or proposed in our so-called civilized countries (suspension of nourishment and liquids to the seriously ill, abortion, euthanasia, failure to reanimate premature babies, but also equally serious though less extreme therapeutic decisions made every day). You need only read the chronicles of the falsehoods published daily in our newspapers.
The layout of the exhibition follows the questions that we progressively asked ourselves and is divided into a number of rooms.
•Visitors enter a “medical” room where they see in brief the history of the study of the quality of life in medicine. Taking the quality of life as our theme is a sign of attention: we are not only concerned to increase life expectancy but also the kind of life we make possible. A lot of studies have been published, but much remains uncertain and is being continuously revised. If it is important to make a careful choice of the parameters for approaching as closely as possible to the truth, at any rate not all of man (and certainly not the essence!) will ever be measurable.
•Then follows the second room “of knowledge.” What do we mean by knowledge (and therefore also by science, by knowing)? There is an immediate kind of knowledge, dictated by recognized evidence (this is bread, it is raining…), but most things are known indirectly through others (the fact that America exists, that someone else loves me, the whole of culture and history…). Besides some things are measurable, others not, but even these are knowable, though by using another method: that of indirect knowledge, through the experience of others. When the Other conveys his experience to me he enables me to know something new. A witness makes reality transparent for me.
•For this reason it is worth listening to these witnesses to a life of quality in circumstances which are not easy. So the third room opens onto the stories of a number of witnesses: Pierre Mertens tells us of the experience he has lived with his daughter Liesje. Other testimonies come from Hospices, or from other difficult situations: AIDS, prisons, Gulags. They reveal not ways of surviving but of living full and undiminished lives.
•How is this possible? What makes for the quality of life? It is only by truly knowing what the quality of life is that we will be able to help improve it. There is nothing automatic about it: there is a movement of freedom. In short, have to make a journey, we have to launch ourselves on the open sea, towards the unknown.
•The exhibition enables us to continue this journey, which becomes personal (it becomes our journey), and at the same time it enables us to reflect on the places of care by enabling us to see things through the eyes of an artist (Marie Michèle Poncet), who has fixed the observations she made while hospitalized in drawings and watercolors, which form a “carnet de voyage” of her time in hospital. From the shock of diagnosis to the discovery of the meaning.
•At the end of the visit we return to the medical theme and question ourselves whether the questionnaires in use are not sadly inadequate to embody the quality of life.
We conclude by inviting visitors to use this knowledge through witnesses in the gestures of care, in the construction of places of care and the drafting of laws, so that man will not be reduced to what most characterizes him: an infinite desire which seeks in reality for an answer to his expectations of goodness and happiness.
Curated by the Associazione Medicina e Persona