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Where Did You Go?

An interview with Maartje Nevejan about the inner worlds of absence seizures

Maartje Nevejan is an independent filmmaker based in Amsterdam, with a background in theatre and multi-media. We spoke about If you are not there, where are you?, her art and multi-media project that maps experiences of absence-epilepsy, something that she experienced as a child.

Maartje Nevejan: Absence Epilepsy is a few seconds of being absent; that what other people see. Sometimes it’s so short that you don’t notice it, but for the person who has the absences, it is much longer like one or two minutes and you can see that it’s longer than it appears if you put on an EEG.[1] It usually happens with kids and young adults and with 70 percent of the people it just disappears before you reach adulthood. And it is very frequently diagnosed; Some kids can have a hundred absences a day so usually what happens is that they are diagnosed when they are in a primary school because they miss a lot of information because they are ‘the daydreamers’, the kids who are dreaming. It’s also called ‘the dreamy state’ in the United States. It was called ‘petit mal’ for thousands of years.

Epilepsy, as a whole family of conditions, is the oldest disease ever written about it. Hippocrates [2] wrote about it and he called it ‘the sacred disease’. He operated on sheep’s brains to find out about it. So it is one of the oldest diseases ever written about, but still nobody knows exactly what happens. It can be genetic, you can fall and have an injury and get it because of that, you can also have it because of a very big emotional shock. And what we can do is, with an EEG, you put it on your skull so you can measure it from the outside – the electricity – but it is maybe much deeper than that. Nobody knows exactly what it is. People thought they were crazy, and in Britain, until 1971 a marriage could be annulled if someone had epilepsy.[3] It still has very heavy stigma associated with it and that is all because it looks very weird if you have the big seizure; you fall down and you start shaking and you might even pee your pants. That’s so frightening and the stories and the myths around epilepsy are horrible.

I talked to a lot of neurologists and they said that 120,000 people with epilepsy in the UK were interviewed and they found out that 80% of them were depressed. [4] And I understood 18%. And they said, “No, eight zero” so I went to a children’s hospital in London to talk with them. And I said, “Why are they so depressed?” And they said, “Well, because there is no language for this illness. We wish they had bald heads like with cancer or whatever, but they don’t, you don’t see it from the outside.” So what happens is the children, they have this inner experience which is very hard to find language for, so they shut up. And also with the absence seizures, it’s not terrible to have them. It can be dangerous, for instance, if you’re on a bike or swimming, and driving is impossible and very dangerous. But the main problem is the loneliness people are feeling. This is all what I found out later. When I started the project I was just very intrigued by this phenomena I had as a child. I was sitting on a rooftop here in Amsterdam with a few female filmmakers all turning 50 and we were asking ourselves, “”What is the film you didn’t make because you are afraid of it or you didn’t know how to?” And then I said, “I always wanted to do something with these absences I had as a child, but in all the books it says that there’s no consciousness so probably I’m weird because I remember them”. Also I felt that maybe I invented it, maybe I made it up. There was this very big feeling of shame and secrecy about it because neurologists always say, “There is nothing, you cannot remember anything. There’s nothing.” And I said, “But how can I remember something if there’s nothing?”

Hamish MacPherson: And what did you remember?

MN: I remember the fear. I remember vortexes, and feeling like I was being pulled away. I remember being first attracted to something; really attracted, like wanting to go there, and then suddenly feeling disgusted. And although I knew that I probably would be gone if I fell into it, I was still attracted to it. So that’s what I remembered. And then of course, being a filmmaker, I thought, “How can I film the inner lives of people?” So first I went to Oliver Sacks the neurologist. I flew to New York to meet him together with Jane Gauntlett. Do you know her? She’s a UK artist. So we were there when he was celebrating his 80th birthday and I talked with him, I said, “I think there is something, it’s not true that there is no consciousness.” And he said, “I can’t prove it scientifically, but I’m convinced this is the stuff that fairy tales and myths are made of,” which is typical of Oliver Sacks to say, him being a story maker. I thought, “Yes that sounds true for me, but how do I do this?” So I went to the Epilepsy Fund in the Netherlands and they connected me with child neurologists and I did an internship in a children’s hospital, sitting there for a few weeks just listening to all the stories the kids say, the very young ones. And then I made a plan to connect each child with his or her personal artist. So if they would see colours, I would pair them with a painter. If they would hear music, with a composer. If they were talking about dimensions and vortexes, a virtual reality person. So what we did, as I call it, this methodology is called ‘mapping the experience’. So what we did is in collaboration with the kids, we made the worlds where they went to when they were ‘gone’. And then we found out new narratives about absence seizures.

We did an exhibition of all the artworks.

The children were very afraid to tell these stories because we all felt that we were talking about a secret. They never told anyone. They never told the parents or the grandparents. So they said “We are afraid of the audience.” So what I did, I skipped the audience. I said, “Okay, let me just do it for your parents, grandparents and siblings and the neurologist.” And that’s what we did. There was a lot of crying from the parents, you know, there was a lot of shame with the parents because they said, “We’ve been to hospitals and never once asked ‘Where are you? Nobody asks these questions’” and the children never said anything because you already feel that there’s something wrong with you. And probably out of the best intentions sometimes, for instance, there’s one girl who sees this wolf and of course with the best intentions the parents will say “No, there is no there is no wolf.” So the child thinks, “Okay, so nobody else sees this wolf, so I must be crazy.” So they shut up about it. So for the first time we had all these stories and then the neurologist said, “This is crazy because this is new knowledge”, which is something I feel an advocate about.

Because I think to map the inner world, you need this cooperation between science and art. You cannot do it only with science because science is just measuring the outside. But the experiences is all the way inside us. So art is very good to work with. That could be dance, could be music, it could be anything that expresses what the experience is about. So then the neurologists became very interested and I met kids in New York and in London and every time it’s the same experience. Every time the parents start to cry and then the kids first say, “Yeah, it’s very strange. But what I see…” and then there is this very specific story with a lot of details. Like if I would ask, “Okay, so this person you are seeing, do they have short hair or long hair?” they will say, “Well, something in between.” They know exactly what they’re seeing. And I ask, “Where do you see it?” They know where it is; usually it’s in the periphery that they see the wolves or the creatures or whatever they see. So then I wrote a script about it, we worked with a VR company to see what are the variables in all these experiences and work out whether we make a VR experience of that. Then there’s a book written about it now and I’ve been filming this documentary [Are You There?] which is a poetic, essayistic film because I had it as a child and my son had it as well. It starts from me, and then you see all the other young people who have them. I said, “It will only work if I can find a way to go from absence seizures all the way to the stars and back because it is related in a way to this dark energy. And what is there.” First there was nothing then it was dark energy but nobody knows what it is and this feels a bit the same. A lot of children use these metaphors as well about the stars and about the dark energy. And they use the metaphor of film, like “It’s like somebody is editing my life all the time,” or, “Bits are missing all the time.” So the film has a lot of layers of epilepsy, art, science and the universe.

HM: Was it important to find the right kind of collaborators who could make real the elusiveness of these experiences?

MN: We had these artworks of course, and we use them as the inspiration for the film. So what happened was that they were working together and then the artist worked on their own. For instance, if you have a virtual reality person, they would work on their own for a few weeks and then the child would come in again and they would ask say, “Okay, is this it more or less?” and the child would say, “Yeah, yeah, it’s almost there. But then also I taste this and this, or…” Because it’s multi sensory so were never really there. It’s like a metaphor almost, but a very personalised metaphor. So it’s not a representation, it’s an intuitive art form. We call them ‘pheonomenogical expressions’. At last they have a story now that they can tell so they feel less lonely. And it was the first time somebody said to them, “Oh, that’s interesting what you see. What kind of black do you see? Is it really black or is it velvety or is it shiny black?” and then the perspon with absence epilepsy would get interested in what they actually experience. So this is how we came further and further in the research. And for the artist it was very interesting to find this. So for instance, Anish Kapoor is of course working with the blackest material of the universe.

HM: Vantablack. [5]

Yes, it’s now called Kapoor’s Black. He has the same fascination with his black as we have with our black, so that’s why we met in his studio in London. And we had this marvellous conversation about being there and not being there at the same time. How does it work? He’s trying to make objects that are also non-objects that are there and not there at the same time. How does it work? So you have this philosophical sort of phenomenological conversation which was very touching actually for everybody.

HM: And with the families, after the tears, after they’ve seen this world, does it change the way they talk with their child?

MN: Yes, it does. The families would say, “For first time, it’s a story in our family. It was always this thing we didn’t talk about, which you just gave medicine to. And now we have a story and we talk about it every day.” It just opened up this whole loneliness of the child but also from the parents. And then what we saw with the children is they are less afraid. It’s a frightening experience. It’s not that the fear totally goes away, but they are less afraid because at least there’s something interesting about it now. But the most important thing is they are less lonely.

HM: And is there a way to kind of approximate the work you’ve done without these resources? For people that don’t have access to these kind of artists. Are there simpler or quicker ways or cheaper ways to do similar work?

MN: It was supposed to be just to film right now because of the research and because everything that is happening with it now we are suddenly giving lectures all over the world. People are writing us letters asking “Can I join?” I don’t know yet. I mean the film is not out…it doesn’t take a lot of money, but you need, you know, a place where the kids can go to, you have to pay the artists. So it would be fantastic if we could do it somewhere else and maybe train people how to do this because it’s very simple methodology. We just have to ask the right questions, which is true for science as well. It’s all about whether you dare to ask other questions. Like, “Do you taste anything? How does it taste? Is it sweet?” To ask for details brings out the details. It’s almost like a dream, right? If you have a dream at night and if someone asks you then somehow you remember it. Sometimes it feels like that.

HM: Would you be able to say something about your own experience? I’m interested in how did you know it was a thing and it wasn’t just…Because if it’s mostly with children, it might be  easy to ignore.

MN: While working with the people in the film I found out that my story….The story in my family is…I don’t know how old you are, but there was a TV series in the 70s called Policewoman with Angie Dickinson. And this policewoman was called Pepper. So my family said when I had a seizure, “My, she sees Pepper again,” because somehow this Pepper person from the TV and my seizures, were connected. I connected them later on, I think, because I had absences since I was two and we didn’t even have a TV then.

HM: You mean they were happening at the same time or something?

MN: I don’t know what happened, but I think…the gaze of Pepper was so frightening for me that also when people were looking the same way as Pepper, I said, “Oh my God, there’s the Pepper gaze” and I was gone. I would freeze or something. So it became that story. And I see that with more kids that somehow there’s this abstract fear and one of the girls in the film says, “I think I had a fear as a child that was so big and so abstract that in order to talk about it or to relate with it, I had to give it a shape and I gave the shape of a wolf. But I know is not a wolf, but it is a wolf.” And for me, even now if I see Pepper, I get this feeling of…I do not have seizures anymore but I can still feel the vortex in my belly, like [makes tensing sound] and I have to tell myself, “Okay, this is not real.” So somehow the story stays in your head. It’s always the same story. It’s not like dreaming that it’s every time a different story. Every child has one story over the years. And it stays with you your whole life. There’s one story and I think you make the connections somehow. But how we understand it can change because we have a one boy in the project who first saw a hyperbolic space and one object in it that would shift size. [7] And then later when he was studying mathematics, he could connect his experience with certain hyperbolic formula. It changed, not so much the experience, but how he could talk about it. He said, “Yeah, I can now talk about in a mathematical way as an interesting dimension.” But that says something about us as human beings because we are storytelling animals and we need a story in order to understand what is going on inside us. If we do not have a story and people say, “There’s nothing, there’s a short circuit,” and you feel inside you all these abstract, strange feelings. People only see that you are totally still and you freeze and they will say, “Oh, you were gone for a while,” but you know, you were not really gone, but how could tell it? You need a story. So I think what’s happened is that we take the stories in order to survive this.

HM: You say often it kind of goes with adulthood. Are there any thoughts about how that happens or why that happens?

MN: 70% of people grow out of it. No one knows why.

HM: Are there people who experience it, and for whom it is never recognized?

MN: Yes, a lot of them. And the problem with that is that you miss so much information at school. You can imagine that a teacher says, “Okay, get your books………………Today………….in the spring…………..backwards….” And children are like “What?!” because you miss all these pieces of information. A lot of neurologists tell me that these are the kids that teachers would tell to clean the board because that was seen as their level. But when they are put on medication, they suddenly are very good students.

HM: Does the medication removes these absence seizures?

MN: Yeah, it can but it also have a lot of side effects. For example I had medication as a child but when my child had it we didn’t give medication, we just let him grow out of it. The medication can cause children to feel like they’re not there all the time so a lot of kids decide not to take them.

The question is of course, “Is it a disease?” So I went to a child neurologist and they said, “I never say it is a disease. I say it is a condition.” If this condition is bothering you, yes, there’s medication. If it’s not bothering you, no medication, just you know, you have this thing and get used to it and we have to find how to live with it. More or less like people who stutter or people who are short sighted, you have to get used to it. What is special about it instead of what is horrible about it?

HM: The project sounds like it is shedding new light on questions about what we think we know or think we sense in the world, the nature of imagination. It seems to ask questions about different kinds of mental states that we experience.

MN: And then very much in terms of location. So, the question was, “If you’re not there where are you?” So in one sentence this is what the whole project is about; asking ‘where?’ instead of ‘how does it feel?’ or ‘why do you have this? And then suddenly all these stories come out.[6] So the whole thing of location is very important. That it is a space where you go to. For instance, the reasons why we were invited to Anish Kapoor’s studio is because he’s working with his black and he said “This black, it is not a colour, it is a space,” and I totally get that. So also this condition, it feels more or less like a space and in this space things happen and we make a story out of that. But there is a space where you fall into, it’s not into nothingness. It’s not that you are nowhere, you are in a space, but the space is very new to give words to or to give a shape. So this is what we are discovering and that just changes the whole idea of looking at it including for the neurologists. Just this weekend, I had to give a lecture for pediatricians in the Netherlands. They saw clips of the film and they would say, “Oh my God, we never thought you can look at something like this. How can we use this for other conditions?” And I don’t know, I’m just interested in this because I know this and I am interested in the philosophical idea behind it; that you can ask when you dream, “Where are you? What is happening?” We don’t know anything about consciousness yet. To say there’s nothing is not helping I think. And I mean, I don’t know what it is, but I do know that to get this balance between art and science – we work together with the Academy of Science in the Netherlands and with three hospitals – it really creates new knowledge about these inner states that we don’t know anything about yet actually. We know much more about the universe than about our, inner states. Because I don’t know if consciousness is inside actually. It could be inside, but it could also be outside and with your senses sort of tapped into it. We don’t know where it is. It’s very exciting.

[1] Electroencephalogram is test used to find problems related to electrical activity of the brain. Small metal discs with thin wires are placed on the scalp, and then send signals to a computer to record the results.

[2] Hippocrates (c. 460 – c. 370 BCE) was a physician who lived in Classical Greece, considered one of the most outstanding figures in the history of medicine.

[3] The The Matrimonial Causes Act 1937, stated that a marriage could be annulled if “either party to the marriage was at the time of the marriage …subject to recurrent fits of insanity or epilepsy”. In 1971 the Nullity of Marriage Act removed epilepsy as a ground upon which a marriage could be voidable.

[4] Source unknown. According to Epilepsy Action around 1 in every 6 people in the UK will have depression but for people with epilepsy the chances are around 1 in 3. A 2018 metaanalysis of 27 studies found that 22.9% of people with epilepsy had depressive disorders: Scott, A. J., Sharpe, L. , Hunt, C. and Gandy, M. (2017), Anxiety and depressive disorders in people with epilepsy: A meta‐analysis. Epilepsia, 58: 973-982. doi:10.1111/epi.13769

[5] A super-black coating made of tony carbon tubes  packed so close together that light goes in, but can’t escape.

[6]. At the time of interview. The film’s world premiere was in Copenhagen on 26 March 2019.

[7] Hyperbolic geometry is a type of geometry that does not conform to all the rules of traditional – Euclidean – geometry.

Images from Are You There? courtesy of Maartje Nevejan.