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The blows and amazements of a lifetime

- or how to see fireflies on a dark night

Indeed, the disease erases, but it underlines; on one side it eradicates, but only to extol on the other. The essence of the disease is not only in the void that is created, but also in the positive fullness of the substitution activities that fill it. (Michel Foucault)

Dementia processes, like fragments and scribbles of a lifetime, unfold between blows and amazements, laughter and crying, delusions and affections, learning and losses. They are tales of horror, drama, thriller, comedy, romance, adventure. Some sci-fi scenes. In the fluctuations of the disease, there is advice: “You have to do what the heart wants”, there are mysteries: “Nature is vodka”; “The river is big-headed” - there are findings: “I'm blank”; “I’ve swallowed a piece of the sentence”; and there are wisdoms: “Brazil does not take care of the poor”; "We are not this nor that, we are a lot of things". If it is in the darkness of the night that the fireflies shine, how do we see flashes and apparitions in the middle of the blur, in the middle of the fog that is Alzheimer's disease?

For these people forget, remember, imagine, write, sing, cry, laugh, embroider, refuse, wish. They invent a life, despite everything - or precisely for that reason. To see them, to hear them, to speak of them is to turn the blur into a drawing, it is to realize that the dissolution of a world can be the creation of other ways of being and living. It is to perceive that language, memory, the person her/himself does not simply disappear, but is transformed, reinvented, overflowed into other dimensions. If a word doesn't come out, the finger points at something, the eye shines, the gesture describes: a hand that holds a blanket, a hand on the waist, a hand on the head, a hand that covers the eyes. As in a treasure hunt, you need to collect the clues, the traces, the remains: the dripping water after a bath, the coffee grounds in a cup, a saved photo, a joke, a walk, a dance, a song, one smile. The face remains with its marks and distortions.

If it is possible to see fireflies amidst fog and darkness, the faces in front of the mirror show us that it is also important to see the blurs - the blurry view, a lost look, a speech that does not come out, a not moving body, the bathroom that is not found, the portrait and the mirror that reveal ghosts, the coffee, the bath, the food that one can no longer make. To see the fireflies and the blurs, in the midst of the losses, is to see the glimpses that show the constellation of an experience, of a narrative, of a memory, even if it is in a disease that erases them, in which the threads are gradually loosened.

Ultimately, it is not a question of denying the terror of the disease, but of seeing it beyond that horizon. It is to see that, in the middle of confusion, João uses humor and makes up words when they seem to have been lost, Maria sings with such joy and ease, Eunice lovingly meets with her mother.

They do forget, but they imagine. They get confused, delirious, but they also create. If we are willing, they teach us to see differently, to move words and things around, to invent with life. The tractor moves like a house. The monkey in the soap opera will invade the room. We will learn, at the end, that not everything needs to make sense, not everything can be explained, and in this incomprehension we can simply let ourselves be, adrift. If it is not possible to reach through words, let us reach through other means: a silence, a touch, a noise, a look. Perhaps the non-word, the non-reason, the non-sense, although painful, might, at last, liberate us.

We can learn to see that it is about another world, a world in reverse, with other coordinates, another reality, where anything is possible. Why, instead of bringing them into our world, which has become alien to them, showing them how wrong, confused, forgotten and repetitive they are, we ourselves do not try to enter their world? There, we will see the rules are different: the slipper changes the TV channel, the food in the refrigerator can attack, the shiny cookie packaging is a butterfly, the detergent is the cooking oil. If you cannot deny the tragic aspect of the situation, it is also possible to see poetry when we open our eyes to see further, to see beyond.

Acknowledgments and support:

This site is the result of my doctoral research in Anthropology - "Between blows and astonishment: aesthetic and experience in Alzheimer's disease" -, at the State University of Campinas (Unicamp), under the supervision of Guita Grin Debert, and of my post-doctorate research - "How to narrate the loss of narration: autobiographies of people in dementia" -, held at the Visual Anthropology Group (GRAVI) of the University of São Paulo (USP), under the supervision of Sylvia Caiuby Novaes, both funded by the São Paulo Research Foundation (processes no.: 2012/09116-9; 2017/14740-7). The Anthropological Laboratory of Graphic and Image (La’Grima)/Unicamp, coordinated by Suely Kofes and Fabiana Bruno, was also fundamental for the development of the questions and inspirations outlined during my research path.

For 7 years, I followed people in a dementia process in different places: in neurology and geriatric psychiatric consultations at a university hospital, in meetings of the support group of the Brazilian Alzheimer's Association (ABRAz), in blogs, autobiographies and home visits to the families. The interest was to go through the composition of the disease not only as a diagnosis, but also as aesthetics - herein understood as a visual, sensitive thought - and a way of life - or another possible world.

I am deeply grateful to all the people who took the time to tell me their stories. 3 out of the 8 families I chose to accompany were more present: João and Ana Paula; Eunice and Sílvia; Maria, Ivan and Neuza. I shared with them homes, coffees, cakes, lunches, walks, cries, laughter, worries, affections, sorrows and hopes. Not only have they taught me what it is to live dementia processes, they made me see the blows and the amazements of every life.

A while ago, Paula, João's daughter, sent me a message.

Oh, Dani, I have to tell you something. Since yesterday, this's in my heart. For you, it may be a study that you are doing, a research, it's part of the project you have for your professional life. But that's not all, you see? What you're doing to my dad is much bigger than that, you can be sure. I don't know if you believe it, but it's a very spiritual thing, you know. I believe that God had already written this for my father's life, for us to meet you... It has been, you know, healing moments for my family, healing in the soul, healing of wounds. As I said to you, what happened at my brother's house had never happened before [the hug between father and son]. It was something that I'm sure my father's spirit received. Thank you so very much!


When research is no longer just research, that is when it happens and gets where it has to go. For it is I who am grateful for having learned so much.


Daniela Feriani is an anthropologist graduated from the State University of Campinas, with a master's and doctorate degree at the same institution and a postdoctoral degree from the University of São Paulo. She is a researcher at the Anthropological Laboratory of Graphics and Image (La'Grima)/Unicamp and at the Visual Anthropology Group/USP. She is interested in the following themes: visual anthropology; health/illness; (auto)biography and ethnography; memory, time and image; language, delirium and body; notions of person, disease and reality.


Currículo Lattes:


Site Credits:


Daniela Feriani

Development and digital arts:

Matheus Hass

Stop Motion with collages:

Anike Laurita

Stop Motion with lines:

Marina Cunha

Translation of texts:

Mariana Musa de Paula e Silva

Video subtitles translation:

Paula Salla

Video edition:

Ana Carolina Rocha Andrade – Laboratório de Imagem e Som em Antropologia (LISA) / USP

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