Nathalie Blanc

The disease occurs, struggling to say. Why? One hypothesis is that it makes no sense except to define it as it is: natural and makes sense out of us as humans (Merleau-Ponty, 1995). The difference with other type of natures is that it is our body, our own nature. Disease and pain are hard to name at all levels. They lack terms and it is necessary to find unpublished medical examples, or subjective and objective terms. This difficulty has a story, barely touched upon here. The assumption is that we talk of nature, and its fluctuations do not make sense. Disease – rare and chronic diseases especially – makes no sense for the patient facing others and himself; it does not make sense for writers who want to romanticize disease in poetry. The theme, despite its importance, has been little – or insufficiently – written about poetically or prosaically. Doctors also struggle to measure pain, to unravel the skein of sensory expressions; what are the terms? The patients themselves, grouped together in a room waiting for treatment, speak with difficulty of the disease. Yet they need that face-to-face community, because if the disease is rare, loneliness is great, and words are few.

Being sick is an art.
The characteristic of the disease is to mix you up, to refer to the impossibility of knowing where the person is, engendering a loss of reference points. It is not a matter for the occasion, a normal illness, accepted; I talk about these strange diseases that make up our daily lives, refer to the terrible uncertainty of our diminished lives.

True, it is frailty, the impossibility to say who we are, even the ignorance of our destiny, and the difficulty of projecting. These are chronic diseases, not those that can be cured or those with a fatal outcome, but those with which we live, willingly or unwillingly, and which refer to the idea of regular return, regardless of your will. These diseases dictate your fate. They operate silently. They are invisible, compelling, you are acting in reverse, without having the feeling of participating in their happening.

Disease is a constant reminder that you are not alone in your body and your nature takes over, that you weave your knowledge of actions and reactions. Indeed, the subject of this article is disease, not duly labelled as a pathology, but as it takes over command of the self, the self within, from the depths of these intestinal folds so difficult to describe.

It's hard to live. To accept one’s illness is to accept the inability to say, except to repeat like a parrot, what agitates you, despite all your wishes. Uncertainty is the key word, fear is an inescapable dimension. To elaborate about biopower, it is to reduce a sick person to the condition of patient, always expecting the body’s uncertain nature to manifest itself. Therefore, I stutter, I stir, I feel uncertainty. My word is not one, not mine, it is that of another, the other in my body, this third-being that makes me be. This third-being is nature, which does not require a representative. It makes sense alone, and talks in your place, also moaning some days. It is a solitary being who has chosen you as interlocutor. It is a way of thinking about pain, but not the only one.

Indeed, it is important to note that the disease is forcing you to be in spite of yourself, in spite of its nonsense, being foolish. You are tossed into the quicksand of what makes your pleasure, desire and suffering. You are led by that part of yourself that you have just learned to attend to ordinary occasions (maybe more if you are a woman than a man, being stirred up by the moon at monthly frequencies). In the disease, a new dimension of your being manifests itself, recalling that nature, could be addressed as being a bunch of signs which happen while you’re not even conscious of what is going on.

The patient feels dispossessed. This is not only due to being bounced between the hospital or the hospital institution. This is not to be reduced to a number on a paper folder in unskilled hands. No, the main reason is that doctors admit their difficulties, the limits of their knowledge. To be short, we have to admit that having a rare disease, is to be obliged to take into account all body symptoms as signs of what the body has to say. But what does it say and what is a body that says?

Therefore, treat the disease, but describing its meandering is managing an inner alterity which breaks you apart affecting your stability. To talk or write about the disease changes the language in both its expression in time and in its terms (what happens to the words and how to say one is ill?). A research program is required; what place should we accord to that sickness which is necessary in spite of us? The disease is a forced writing regime.

Keywords: Disease, sickness, pail, body, writing
Genealogies: early 14c., "discomfort, inconvenience," from Old French desaise "lack, want; discomfort, distress; trouble, misfortune; disease, sickness," from des- "without, away" (see dis-) + aise "ease" (see ease). Sense of "sickness, illness" in English first recorded late 14c.; the word still sometimes was used in its literal sense early 17c. Further etymologies here
Synonyms: sickness
Antonyms: recovery

Blanc, N., (2015), Malade, je suis malade, in : Blanc, N., Christoffel, D. (Eds) 2015, Multitudes 60: Dossier « Parler nature », Paris, pp. 51-63.
Merleau-Ponty, M. (1995). La Nature. Cours du Collège de France, notes. Paris: Seuil.

COST Action IS1307 New Materialism: Networking European Scholarship on 'How Matter Comes to Matter'.

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