Arthur Meijer 11283327 Arthurdm@planet.nl Dr. C. Skirke The Disintegration of Sense

(1)

The Disintegration of Sense

Arthur Meijer 11283327

Arthurdm@planet.nl

Dr. C. Skirke

(2)

Time is the sense of our lives –Merleau-Ponty

(3)

Introduction

Alzheimer’s Disease is a debilitating illness of which relatively little is known. Its impact, on the other hand, is not a mystery. In a way, we can speak of a “disintegrating Self” – the person struck by the disease will slowly lose their grip on themselves and their surroundings. This decline has given rise to a lot of speculation on what is going on within the experience of the patient.

A potent medium for exploration is art. There are plenty of artistic representations of Alzheimer’s, ranging from Uterhmohlen’s self-portraits after diagnosis, books, such as the Dutch Hersenschimmen, by Bernlef, or music. This latter might not be as familiar as the others, but may provide useful insights. In this work we will use Everywhere At The End Of Time, by “The Caretaker” as a lens to look through. On its own, this work will not answer any questions concerning the mystery of the disintegration, but it provides, as stated, a lens; a scaffolding for our theory.

Considering we are exploring topics such as Self, experience, and the attempt to understand another’s experience, we will use phenomenology, as this is the most encompassing theory when it comes to these topics. We will set out a framework of phenomenology, using only the aspects we need and leaving older, less useful, interpretations aside. Afterwards we will apply this framework to Everywhere At The End Of Time, giving us an alternative approach to the disease than given by medical research and caregiving practices. In doing this, we are giving a more comprehensive framework of empathy upon which better understanding of the patient’s experience can be build, which might result in the possibility of providing better care.

(5)

Part I

The Framework

(6)

Alzheimer’s Disease

Alzheimer’s Disease is one of many forms of dementia. It is caused by a build-up of proteins on the neurons in the brain, disrupting their function, and finally killing them. Its cause is unknown (though there are a few risk-factors that we are aware of), and it mainly occurs in the elderly.

In Alzheimer’s Disease, the body’s capacity to break down proteins (autophagy) is disrupted, causing a build-up of proteins on neuronal pathways (Nixon and Yang, 2011, 38 – 39). According to Nixon and Yang’s research, these proteins are part of a greater process, and are therefore present even in healthy brains. However, in healthy brains the breakdown rate is equal to, or exceeds, the rate at which they are produced (41). This, however, is not yet conclusive. This study states that the disfunction of the entire system is “uniquely extensive among late age onset neurological disorders”

(43), meaning that the exact workings of this system remain vague – there could be many more factors at play. However, the build-up of proteins and degradation of neuron functionality do seem to be consistent factors that are important for our research. For our purposes an extensive research is not required. We only need to find a link between bodily function and experience, if there is any to be found.

In another study, a link between chronic inflammation and Alzheimer’s disease was studied.

Here, environmental factors, such as obesity, increased the risk of Alzheimer’s disease, as the protein build-up that causes it, was more likely to occur due to a standard immune response in the body (inflammation), being triggered constantly (Heneka, et. al., 2015).

Aside from physical symptoms, a lot remains unknown about Alzheimer’s disease, and its development is very personal (Kollaard, 2012, 10); some patients experience a very gradual decline, others decline in great steps with pauses in between each. This experiential level of the disease makes it philosophically interesting. Although memory loss is the most well-known factor of Alzheimer’s, there are a lot more things disintegrating, ranging from cognition to perception and orientation (12).

In short, aside from memory loss, the patient’s entire frame of experience is affected. With this decline comes a decline of the sense of Self – a decline of the experiential framework that the physiological pathology does not, and cannot, explain.

All these factors give rise to both artistic and philosophical interest: What is going on in the experience of an Alzheimer’s patient? There are plenty of artistic representations of the decline of the patient, William Utermohlen being perhaps the most famous with his series of self-portraits after diagnosis. More recently there has been another project aimed at the representation of life’s decay.

This work is Everywhere At The End Of Time (hereafter EATEOT), by James Leyland Kirby, under the alias “The Caretaker”. It is a musical work, comprised of six stages, totalling to six and a half hours of music. Throughout the stages the cognitive decline becomes apparent through repetition, distortion, jumps, and cuts. The most interesting thing about this work, is that it was made by someone not suffering from Alzheimer’s themselves. Despite this, their work is seen by many as an accurate representation (comparing the feeling of the work to the loss of a relative to Alzheimer’s).

In this thesis I will explore the experiential framework of Alzheimer’s and how it differs from a healthy framework. Our focal point is EATEOT, asking the simple question: How? How can a healthy person create a musical piece representing a pathological frame of experience? In other words, how are we able to understand and empathise with an Alzheimer’s patient, considering how different their frame of experience is? If EATEOT is in any sense a representation of such a framework, there must be something primordial that, no matter how different the rest of the frame is, remains shared with other, healthy, people.

(7)

In order to find this out, we will set out from traditional phenomenology, focussing on the fundamental, ontological aspects of it. This will include a theory of temporality, the unity of consciousness, and the experience of “selfhood”. After this, an explanation of empathy and the experience of music will follow. Based on these theories, we can take a look at the framework of experience of the patient and its representation in EATEOT.

Phenomenology of Disintegrating Experience

In order to give a phenomenological explanation of the experience of Alzheimer’s disease, we will need to set out a framework first. This project will consist mainly of picking apart concepts that are well accepted within the phenomenological tradition. We will need to set out which of these are important for us, and how we will go about applying or dissecting them. The most fundamental, and most important for our purposes, is the sense of Self. This concept has many different explanations and versions, most of which are too demanding for our project. As most ideas of a human Self revolve around the unity of consciousness (the fact that there is something that endures among all different experiences that we are having), we will start with this. Since our project is an empathic one, we will need to take a look at what is different in the sense of Self, and unity of consciousness in a patient, and how a non-patient can connect with them.

The unity of consciousness is not something we can simply presuppose: Where does this unity in consciousness come from? Most phenomenologists seem to argue that “[t]ime is literally the sense of our life” (Merleau-Ponty, 2012, 454). This is where we will start. From this idea of a primordial temporality, we will move on to the idea of a unified consciousness, the ability to perform extases on an original unity, the positing of selfhood, and intentionality. As these ideas overlap and intertwine at various points, due to their ontological nature, we will take a more hermeneutical approach to them;

we will try to explain these topics separately as much as possible, but it will be impossible for them not to intertwine.

• Temporality and Temporal Experience

When we perceive, or otherwise have experiences, there is a logical unity to them – movement is not perceived as something comprised of individual snapshots only put together after realizing we’re witnessing movement. A melody is not heard as individual notes, but as an entirety. Better yet, the entire melody would be different if one of the notes were different. Yet the melody is not perceived all at once, there is duration and succession to it. In order to perceive such a melody (much like a movement) there needs to be something in – for lack of a better word – consciousness that ties the perception of one moment to the perception of the next moment.

Many different phenomenologists have struggled with this question, and entire agreement does not exist. There are however a few fundamental notions that do reappear everywhere one looks.

To these we turn now.

As is clear from the example above, there needs to be a unity of time – which we will from now on call temporality, as some theories differentiate the two. Temporality is seen as primordial unity. The so-called “extases”, or “projections” of past, present and future are only secondarily derived from this unity. Of these extases, the past is most important for our investigation. In phenomenology, however, the future is often seen as primary. We will have a quick look at the future, in order to indicate some of its problematic aspects.

(8)

The future is often seen as the extasis that gives meaning to our life. Heidegger is the most radical in this approach, going so far as to say that it is only through knowing that we are going to die that we can live an authentic life, in which we take up projects that are truly ours (Heidegger, 2010, 228). Despite the future being the extasis towards which we are living, Heidegger’s statement implies that without the extasis of the future, which we would lose in the later stages of Alzheimer’s disease, our lives would not be authentic, or, more radically, simply not human. In this case, empathy is far away, which is exactly what we don’t want. What this extasis does show, is that we take up a perspective towards the primordial unity of temporality. In stating that we live towards the future in order to take up an authentic life, to take up projects that only we can do, it shows that these extases are important in the human capacity to make sense of time.

So how does one take up a perspective towards time, and what changes in one’s framework of experience once this capacity no longer exists? On top of this, if these extases are only secondarily derived from a pre-existing unity, what comes prior to it? Here we will move towards the ideas of protentions and retentions, and human being as the being of time and self-consciousness.

o Taking up a perspective in time

This “taking up of a perspective” is not as simple as it may seem, yet it is the distinguishing factor between human being (consciousness) and all other forms of being. In order to get a clearer idea of perspective, it is useful to have a closer look at “Being-in-the-world”, a concept introduced by Heidegger, and taken up in many different ways. For Heidegger it is the distinguishing factor between human being (Dasein) and other forms of being, in that all being is objectively in the world, while Dasein is existentially in the world (55). This means that, above simply being an object in a location related to other objects, Dasein takes an active relationship towards the world; it inhabits it. Dasein has a familiarity with the world through dealing with it (102).

This is not yet the perspective we are looking for, but it is an ontological presupposition we need, although Heidegger ascribes a role to it that we cannot maintain: Dasein is somehow familiar with the world, but this cannot be the being of Dasein – then Alzheimer’s would make the patient less than human. This sphere of familiarity is something that disintegrates in Alzheimer’s Disease. If we wish to maintain the personhood (the being human) of the patient, then we must look for it outside of this sphere of familiarity.

In order to maintain personhood in the Alzheimer’s patient, the being of human consciousness cannot consist in the awareness of death, nor in existential familiarity with the world – in short, Heidegger’s concept of Dasein is too demanding. What must the being of human consciousness be, if even a pathological consciousness can still be counted as human consciousness? There must be a more ontological level in consciousness than those Heidegger mentions.

Merleau-Ponty already noted that consciousness does not have degrees – every consciousness is a full one, even if it is pathological (Merleau-Ponty, 124). In other words, the content of consciousness can be changed by disease, while its form always remains the same. As we have mentioned before, according to Merleau-Ponty, time is the sense of our lives. In order to explain what he means by the form of consciousness, then, we must take a look at his idea of time, and our perspective on it.

There is a famous metaphor of time that consists of a flowing river. If one were to look at the flow of the water, which way is past, and which way is future? According to Merleau-Ponty, this is entirely dependent on the position of the subject – the witness (434). Time, according to Merleau-

(9)

Ponty, is not in things, but unfolds from the subject (433). This means that the future is always that which is “still to come” for the subject. In other words, the subject takes up a perspective towards time, but how does one do this? It cannot be simply because we have a body, as time is not in things.

The body needs to have a special place, or special form of being, in order to allow us this perspective.

However, time, unlike space, is not something outside of us – our body is not in time the way it is in space. Time unfolds from us. It is not an objective entity that, like a film reel, passes by (434).

Time, in fact, is nothing at all – that is why it needs to come from the subject. The world contains everything that is, there is no space left for non-being. All the things that are not, then, must come from the subject (434 – 435). Merleau-Ponty makes a move that is similar to the one made by Heidegger, and very reminiscent of Husserl: Time is something not constituted, but unfolding through horizons in the “field of presence” – every present carries its past and future along with it (437). In other words, we are time (445). Remembering that every consciousness is a full one, we can already allude to what we will discuss further in the section on music: even if an Alzheimer’s patient’s framework of experience is significantly altered, it is still a human experience – still an unfolding of time, only differently – the content of the field of presence changes, while it remains a structure of retentions and protentions.

Generally, the field of presence is the present together with the (distant) past and future (438). In this, we recognize the idea of time as a unity, not separate “nows” following one another. In this, there is a so-called “operative intentionality” – a primordial intentionality that precedes our thetic consciousness (intentionality towards objects in the world) (453). Operative intentionality is, in essence, transcendence. It is the fact that the present already contains both past and future – and thus exceeds itself – which makes it possible to have memories of the past and fantasies about the future (441 – 442). There is, however, a difference in how we experience the just past, and the past that we need to memorize – just compare listening to a melody with remembering an experience from childhood. Husserl discusses this difference in detail, focussing on the imaginary nature of recollection.

In explaining retentional consciousness and primary remembrance Husserl uses the example of a sound heard. The sound heard in the precise now is at its peak of intensity. After this, it will drown out and reverberate. The perception of both sound and reverberation are different in kind from primary remembrance (retention), in the fact that they are perceived – retention is a different kind of intentionality (Moran et. al., 2002, 109 – 110). Yet, it is closely connected to perception. Husserl uses the analogy of a comet’s trail (112) – the trail is not really a part of the comet, but could not exist independently of it. This becomes evident when he writes about melody. What is heard is the note in the now-moment, yet we say that we hear a melody, and the perception of the melody only ends when the melody ends. A melody, then, is an object of perception that has a duration – it is a temporal object (113). This means that, in retention, are the notes no longer heard, nor reverberating, but the notes past. This remains in Alzheimer’s; even though what is heard in the later stages is not even close to what we consider a melody, there is most certainly a flowing element to it – there is still a movement from the present towards the future, within this one moment already transcending towards its inevitable future.

Further different from retention is recollection. Here, it is not connected to a perception, rather, we are in the realm of fantasy. Despite this being a form of “as-if perceived”, it functions exactly the same as perception (ibid). Instead of following Husserl’s lengthy explanation, we could simply state with Merleau-Ponty that what is recollected is the phenomenal field, with its retentions and protentions (Merleau-Ponty, 2010, 438 – 439). The content of this phenomenal field plays out in imagination, just as it would if it were actually perceived – as operative intentionality has already shown us: it is an essential part of every form of consciousness (intentionality – whether this is

(10)

perception or imagination) to already contain its past and future. In short: the structure of consciousness is always the same structure of transcendence, only its content changes.

We are here, however, confronted with the notion of fantasy: Recollection is not perception, but something that comes from the subject itself. Does this mean that it holds no value, or no reality at all? Then what does it mean to recollect? In order to explain this further, we must take a look at the Ego, or, the sense of Self; we must answer the question “Who is recollecting what?”

• Self

Despite recollection happening within the subject, and therefore being part of fantasy, it is not entirely the same as fantasy. Recollection needs a preceding perception, otherwise it would not be a recollection, but simply a fabrication, or, fantasy. Who is the subject that perceives and remembers?

The idea of a Self, I, or Ego, is one that is disputed within phenomenology. Whether the Ego is something that comes about in reflection, or is the prerequisite for consciousness is something we will have to discuss.

o Secondary Ego and Past

Starting with the first idea; the Ego as something secondary, we follow Sartre’s The Transcendence of the Ego, in which he disputes Husserl’s idea of the Ego as “inhabitant” of consciousness (Sartre, 2004, vi). In this conception, the sense of an “I” comes about only when we reflect, or remember an act done. When we are doing the act and are absorbed in it, there is no “I” (8). The “I”, rather, is something fabricated by consciousness onto which we can project states, activities and qualities – in short, it is the answer to the question “Who am I?” Sartre sees this as a false representation (28), as the standpoint of an Other, which is necessarily false (22): we are pretending we ourselves are different from that “I” we posit. But is this so bad? Sartre’s idea of the Ego as objectified consciousness has been taken up by others in a positive light, and that seems to be the more useful interpretation for us here. The Self as narrative is even used as a therapeutic method in treating Alzheimer’s patients.

Among the methods of reminiscence is the so-called “life-book”, which is somewhat of a memoir for the person themselves; a narrative of their life, something they can look back on, talk about, which will perhaps help them remember (Kollaard, 98).

However, reminiscence is focussed on the past – the part of time in which Sartre indeed allows a static “I”. In the present there is only the radical freedom of consciousness aimed towards the future.

But in aiming towards the future we are aiming towards an “I” that I am not yet – is this not equally a

“falsified representation of consciousness”? Perhaps the static “I” is something we cannot get around easily, which is certainly not a bad thing. It might even be central when dealing with Alzheimer’s patients.

Let’s have a look at an interpretation of the Self as narrative, before moving further into Sartre’s ideas on self-consciousness and temporality. Lior Levy argues that the Self as narrative is imaginary, but allows for real existence (Levy, 2013, 101 – 102). Just as we get invested in fictional stories, while knowing that the people in those stories are not active subjects, but passive objects designed by the writer (active subject) to seem active, so we constitute an Ego through reflection (ibid). The experiences in the past we reflect on never contained a Self when they happened. Rather, they are ascribed a Self through reflection in order for us to make sense of them (104). It is this “making sense through the construction of a Self” that Levy sees as fundamental to having a meaningful life. In order to further argue for this, Levy invokes a statement Sartre makes in Being and Nothingness,

(11)

concerning the past. According to this statement, the past serves as a prism through which our present and future make sense (106). It is through memory that we create habits, dispositions, etc. And it is through memory that we confront experiences in the present and future.

A closer look at Sartre’s idea of the past as who I am is useful here, as we seem to get closer to an idea of self through the temporal extases. We have seen up until now that our past can only be reflected on from the present, while past and present are both temporal extases that originally do not contain an “I”. Yet, through reflection, we cannot help but constitute this “I”. Sartre devotes some pages to the concepts of past and reflection in his Being and Nothingness, at which we will take a brief look.

According to Sartre, every past belongs to a certain present and future – the past is originally the past of this present (Sartre, 2003, 134). It is not some isolated being, or a form of non-being, but entirely related to the whole of temporality. This means that there must be something in our being connecting both present and past together, otherwise we would not be able to remember (ibid).

Sartre gives an example of someone who was a student in the past. In order for them to state that they have studied, they must refer to themselves in the past tense (was), as the only time that they were studying there was while that was still the present. In the current present the person is no longer a student. There must, then, be some connecting sense between these two tenses in order to have both these experiences united in the same person. Sartre states that the “pasts” of a person are all part of the same Erlebnis (135). Simply put, a person still is their pasts in the mode of having been.

This person would not be this person without these pasts. However, these pasts are not owned in the sense of a possession, but they are an essential part of our being – we are our pasts (137).

Here, Sartre invokes a central claim of his phenomenology: the human being (for-itself) has to be conscious of itself, as it can only be the things it is insofar it is conscious of being them (if one is not conscious of being sad, one is not sad) (ibid). The same goes for the temporal extases – if I am not conscious of my past, I cannot be it, therefore, I have to consciously be my past in the present. This is where Sartre plays with the word “was”. According to him, this word belongs to neither the present, or the past, but indicates the “ontological leap” between them. Making of the word “was” this temporal bridge, as it were, one can easier explain what Sartre means by being one’s past in the present. Making a statement in the present about one’s past affects one in the present: it makes one happy, sad, etc. It is the feeling experienced through an event that is not, for the world contains only what is, that makes us be our past (138). I can only distance myself from this past after having a feeling through it that I no longer wish to feel. Upon death one can no longer distance himself from his past, and is forced to be it entirely, like an object (in-itself).

Thus, in the past, we are what we are. Here Sartre’s famous statement of “being it in order not to be it, and not being it in order to be it” returns (140): we are the past in the mode of “was”, therefore, we are our past in a different mode of being than what we are, yet we are not entirely separated from it – we are still our past. In other words: “The past is the in-itself which I am, but I am this in-itself as surpassed” (141). Here Sartre connects it with facticity: the necessity of being this being (ibid). Facticity and the past are two words designating this same necessity: the necessary contingency of being this in-itself. In short, the Self is, for Sartre, something that we both are and are not. It is not entirely the Ego, as this is simply an object, which we are not. Nor is it entirely freedom, as we are our past and cannot separate ourselves from it. The Self, then, is something passively undergone (facticity of the past) and actively produced (distancing from this past towards the future). Sartre, however, focusses on his existentialist account of radical freedom, which means that he does not spend too much time on the concept of memory – a concept that is foundational in the literature on Alzheimer’s.

However, we do not need to put Sartre aside in the same way we did Heidegger. Although his

(12)

foundational idea of human freedom would undermine our presupposition of the humanity of an Alzheimer’s patient, both his ideas of Ego and self-consciousness are fundamental for our purposes.

For a more useful account of both of these, we turn to Zahavi.

o Minimal Self and Narrative Self

Zahavi agrees with the idea that the Self is something active, produced, achieved (Zahavi, 2014, 11).

Through contrasting himself to authors who focus solely on the Self as social construct, Zahavi wishes to pose something of a minimal concept of Self – a more fundamental aspect of Self that goes before the social construct of it (ibid). How tenable is his conception of Self, seen from our phenomenological framework, and aiming at pathologies of Self, such as Alzheimer’s?

Zahavi goes back to the idea of self-consciousness (pure reflection), which makes recollection (impure reflection) possible (ibid). Simply put, it is essential to the structure of consciousness to be aware of itself as consciousness (for if it were not, it would simply be an object) – this consciousness of self is the abovementioned “being what it is not, while being not what it is”, meaning that the structure of transcendence is the very structure of consciousness itself (Sartre, 2003, 101). It is this essential part – pure reflection – that makes impure reflection possible – which we’ve already discussed: instead of following the essential structure of consciousness itself, it can also pretend to be an object and reflect on that. After describing several trivial parts of phenomenology (different forms and contents of intentional acts: fantasy is a different form of intentionality than perception), Zahavi focusses on the permanence in the experiential field: Every intention, no matter how their form or content changes, contains a “what-it-is-like”, and this what-it-is-like is always first-personal, it is always like something for me (19). This can be summarized as follows: This first-person perspective that experience necessarily entails not only states that experiences require someone to experience them, but that our awareness of our own experiences is vastly different from our awareness of the experiences of others (24).

Within the idea of a narrative self, this becomes problematic: Does the narrative shape our Self, as Levy argues, or is the Self a required pre-existence upon which we can build this narrative, as Sartre argues? Zahavi puts it succinctly when he mentions the first-person perspective again: in order to tell a story from this perspective, the perspective must first exist (59). This guides us closer to our empathic process based on EATEOT: even if the narrative Self is so important for understanding our lives, and is indeed lost in Alzheimer’s disease, this might not be the loss of Self itself – the Self might already be lost, causing the narrative faculty to become impossible as well, implying this difference between a minimal Self and narrative Self (60), or, the Self remains untouched, and only the narrative capacity disintegrates. We must take a look at whether the narrative capacity not only changes the what of experience (We can follow Zahavi in granting that better language and concepts change the content of experience), but also the how of experience (62).

According to Zahavi, the how of experience cannot be changed by narrative faculties, as this would imply that people without them would suddenly not have a Self anymore. As luck would have it, he uses Alzheimer’s Disease as example: although the patient in later stages cannot form a narrative of his own life, he certainly still feels a Self – he still feels as an experiencing entity (60). In other words, we must find a different core of selfhood – one that is not a posited Ego upon which we can hang a narrative, because, as Sartre himself also stated, this first-person perspective must first exist.

However, this first-person perspective on its own is not enough to explain human selfhood (90), for the same reasons as argued by Levy. In the end, Zahavi proposes a multi-dimensional account

(13)

of Self, as it is “just as much made as found” (ibid). In this, we have to think about Merleau-Ponty’s bodily idea of Self, in which we come from a pre-communicative anonymity, from which the individual arises only through the boundaries of its body (80), but also Husserl’s idea of a primal I, which is very much like the discussed first-personal experiential consciousness – the I that cannot be compared to any other I, simply through being the I of this particular consciousness (84).

If we compare this idea to what we have already explained from Husserl and Sartre, we see similarities in the primal I and the perceptual field, the historical, social I, and Sartre’s idea of past. In other words: there is the primordial unity in consciousness that allows us to have experiences spread out in a temporal flow (such as a melody), but there are also the extases we can make of this primordial unity, and ascribe meaning to. We are inevitably thrown back upon the problem of memories: arguing that the social Self is the Self that objectifies our consciousness, makes of the past – and therefore of memories – something social and secondary. In this sense, memories are not primary in our constitution of Self, but only necessary for our sense of a social, or narrative Self. Being secondary, however, does not mean that it is of no importance, as we have seen in Levy’s account of the narrative, and Zahavi’s own conclusion that the minimal Self is not sufficient to explain human personhood.

However, by making human personhood dependent upon this narrative, social, sense of Self, one comes dangerously close to the same idea that made us disagree with Heidegger: losing the faculty of narrativizing one’s life would then mean that one falls below the boundary of human personhood, and is left with only the minimal Self, or primal I – which is essential to consciousness, but not sufficient for being a human person.

This seems to leave us with more questions than we started with. If the Self is such a complex concept (with or without real existence), how can we ever compare the Self of me and Other, let alone figure out the differences in experiential framework? It seems that we have to take a turn towards intersubjectivity. In what follows I will give an account of intersubjectivity and empathy, and their influence upon the Self. Is empathy possible due to the narrative Self, or is there a primordial I or anonymity that we recognize in every human being, no matter how pathological?

• Intersubjectivity and Empathy

So far we have not been able to pinpoint the part of consciousness that is essentially human. In order for us to argue for a pathological consciousness to still be human, we must have a look at how we live with others, how we empathize with them, and what this is based on. If Merleau-Ponty is correct in stating that every consciousness is a full consciousness, no matter how pathological, then we must find this permanent form of consciousness, and see how empathy is dependent upon it. This is where the concepts of familiarity and the primordial unity of temporality will return as well.

A first thing we need to realize, is that when we are listening to EATEOT, we are not empathizing with a person – there is no human being on the other side whose emotions we perceive and understand. There is only the musical work. However, after our explanation of empathy, we will see a close link between it and listening to music. Another aspect that is important in our research is the narrative aspect. Even though the patient might no longer be able to form a narrative of their own experiences, which would perhaps make them less human in demanding theories, their narrative does not suddenly disappear. As long as we know that this narrative is connected to a person – in the same way that Sartre states that we are our past in the mode of having been – we can empathize with both it and the person we’re seeing now, who is so far removed from that narrative. In short, we will have

(14)

to explain the foundational level of empathy and subsequently what role a narrative (or context) plays in the different ways in which we can engage with people.

Just as the concept of Self is multifaceted and complicated enough to warrant multiple plausible interpretations, so is empathy a concept of multiple interpretations. Depending on whether one sees the Self as primarily first-personal, or a social or narrative construct, one’s concept of empathy will change as well. Zahavi discusses multiple possible interpretations of empathy, coming not to any conclusive idea. However, there are a few notions that seem useful to our work.

Starting with Scheler, who is a central figure in theories on empathy, one must distinguish clearly between empathy and other other-directed emotions, such as sympathy. Whereas sympathy is an emotional response to someone else’s emotion, empathy is more primary, and less involved.

According to Scheler, if one is to respond to someone’s distress, this distress must first be given (Scheler, 2008, 8 – 11). It is this givenness that he calls empathy (Zahavi, 115). In his The Nature of Sympathy Scheler sets out this primacy of empathy in detail. Important for our purposes is that he places it in a fundamental position: every emotional creature is capable of, and subject to/of empathy (Scheler, 130). An interesting distinction – one that will prove vital to our purpose – is that the further another emotional, living, being is removed from human being, the harder it becomes to empathize.

However, the most vital emotions (terror, anguish, etc.) will always be recognized in their expression (48). This bridging between human and animal alludes to another central point (into which we will dive deeper when discussing Stein’s theory): if I am to genuinely empathize with an Other, there must be a presupposed difference between me and Other, otherwise I would simply be feeling my pain (55).

In short, when we experience the expressions of the other, the emotions underlying those expressions are given to us, directly. In stating this, we are summing up quite a bit of discussion, so let’s look at a few of the important points, such as the link between expression and emotion, what it means to experience something directly, and experiencing emotions that are not ours.

We will start with the last – experiencing other people’s emotions. This can take on multiple forms, such as so-called emotional contagion, in which one is feeling the same emotion as perceived in the other (Zahavi, 101), or through projection, where we pretend we’re in the same position as the other and asking ourselves how we would feel (102). However, all of these accounts seem to presuppose that there is something directly perceived in emotional expressions – we can see the anger, sadness, or joy of the other (104, 107). Not entirely unexpected, the rest of Zahavi’s book discusses different perspectives on this givenness of the (emotions of) the other. It is, just like the concept of Self, a multifaceted phenomenon, one that ties in to multiple ontological ideas of human existence. It is beyond the scope of this work to explain this even in small detail, but one conception stands out among all of them. This is the idea of a primordially shared life-world, or, the fact that we live in a world in which our intentionality is not the only possible one – there are always other perspectives possible.

When it comes to perception – the actual seeing – this is not difficult to imagine: one can move around an object that one is seeing, taking up a different perspective oneself. It is through this possibility of our body to move around that we see other people as people like us (158). In this sense, one could state that empathy still consists of projection: it is because I know that I pull a funny face when stubbing my toe, that when someone else does this, I can imagine that they are feeling pain, simply because what they are doing is something I can do (and, sadly, have done) with my body.

There is, however, a fundamental difference between projection and the concept of a shared life-world. Projection is often ascribed to neurological processes, such as mirror-neurons (154;

Rizzolatti et. al. 2004; Thompson, 2007, 394 – 395), meaning that there is a causal relation to empathy.

(15)

What is more, this idea presupposes a Self, prior to others: I first learn of the Self before I can learn that others behave similarly. The idea of a shared life-world sees these two in tandem – I always exist among Others, and it is through this intersubjective existence that both my sense of Self and empathy develop. In her On the Problem of Empathy, Edith Stein says something similar: It is through empathy, through seeing how Others value things, that we can become aware of deficient values in our own life – it is through seeing someone else doing something worthwhile that we can recognize our own deficiencies that before were invisible (Stein, 1989, 116): we gain a better understanding of ourselves through the behaviour of Others.

It is in the later stages of Zahavi’s book that he discusses scientific findings that back these ideas. To put it bluntly, there are too many factors at play to clearly state where the Self ends and the Other starts (or the other way around), nor is there any conclusive evidence for either a neurological causality for recognizing Others, or a developmental aspect in which we can ascribe a clear boundary – one where a child realizes it is not alone (Zahavi, 231 – 234).

These problems are useful for us, as they allow us to choose a middle position between the concept of Self as first-personal, and the Self as narrative. As stated before, the first one is very much focussed on my experience, fully disconnected from any possible contagion of the Other. The narrative Self, on the other hand, was very much a social-oriented concept of Self. With the concept of empathy complicating the social aspect (does it develop out of a Self, or does it develop the Self?) we have seen that we cannot clearly state either: The Self is as much found as made. Zahavi himself introduced the idea of a interpersonal self by Neisser (238). This notion introduces another dimension of Self, namely self-other-consciousness (ibid), which focusses on the relation between me and Other. As the term interpersonal already implies, this puts us between the social, narrative Self, and the first-personal experiential Self. In fact, the Self consists in any case of a little bit of both. Neisser himself articulates this notion together with the ecological self: the being in its environment recognizing the possibilities in that environment (Neisser, 1991, 201). Much like this ecological self, the interpersonal self is primary and based on perception (204).

This idea of self-other-consciousness is relevant for the idea of empathy by Stein and Husserl as well. Neither of them discusses this relationship as such, but their idea of empathy is very much focused on the intentionality of another. Simply put, empathy, according to Stein and Husserl, consists on the most fundamental level of recognizing the Other as a living, sensing body – as someone with a perspective on the same world as you (137). In short, even though the experience perceived lacks the first-personal quality of one’s own experiences, these perceived emotions of the Other are actually perceived. They are not imagined, or in any other way represented, but directly apprehended by the one who empathises (126). This direct perception relies on a concept of the other person as an embodied one: it is not the case that the body is an indirect representation of a mental state, but it is as irreducible a part of the person as their mind is (127 – 128). In stating this, we are making of empathy a direct (though far from first-personal) experience of another’s emotions (130). Simply put, we experience the sadness of another not as sadness we experience, but as their sadness, respecting the gap that exists between us.

We’ve already mentioned Merleau-Ponty’s earlier conception of intersubjectivity through the body. In terms of empathy this causes problems, as the pre-personal anonymity seems to disregard the essential gap between persons. This pre-personal anonymity is the pre-reflective, sensing body (Merleau-Ponty, 223). As stated, it is through recognizing the bounds of our own body and the comparability with other bodies that we realize there are other bodies, who, deduced from their behaviour, must also be conscious bodies (364). This is the exact inverse of what we’ve been arguing.

According to Merleau-Ponty’s earlier theory, it is the body that is central in recognizing another as an

(16)

“I”. Yet, this body only refers to that pre-reflective, pre-subjective anonymity, meaning that we are closer to emotional contagion than to empathy. In his later writings, Merleau-Ponty drastically changes his conception of this pre-reflective sphere and its implications; there, it is exactly through the pre-reflective, alien, nature of the body that the gap opens up in which the Other can appear, rather than the Other itself. We’ll go deeper into this conception in our section on music.

All of the above explanations assume an interaction between healthy persons. We need to look at interactions with a pathological framework, an experience in which the shared life-world might not be a presupposition. For if we cannot look at the Other as someone undertaking actions or feeling emotions that we can also undertake and feel, how can we empathize? We might still have a direct perception of them, but might be entirely unable to actually interpret them. In order to explore this notion further, we will take a look at a more in-depth article on Stein’s concept of empathy and the concept of “radical” empathy.

o Radical Empathy

Svenaeus undertakes an analysis of Stein’s “directness of empathy” in his “The Phenomenology of empathy: a Steinian emotional account”. He does argue that empathy is a direct apprehension, but might not actually be a perception, but more on the side of imagination (Svenaeus, 2016, 236). On top of this, his account focusses more on the pre-reflective body and the concept of a shared life-world.

In his interpretation of Stein’s idea of empathy he states that we have affective schemas, much like Merleau-Ponty’s body schemas; the pre-reflective postures of our body that give significance to our movements (231). Affective schemas are similar, and can be compared to moods: the way we feel influences how we perceive the world. In short, our feelings contain significance (228). Even though neuroscience is better capable of explaining what is going on inside our brain, the way meaning is attached to the causal effect of feelings, remains unknown (231).

This is important to mention, for in Svenaeus’ idea of empathy, this pre-reflective account of feeling, and recognizing feeling in Others, plays a huge role. As stated above, empathy works on this pre-reflective level, yet instead of a more scientific account of mirror-neurons, Stein and Svenaeus argue that our feeling-with, our emotional involvement with the Other we are empathizing with, cannot, and does not have to be, similar to the feeling of the Other (240). In fact, their account of empathy respects the fact that there are insurmountable differences between the experiences of people (very similar to the account given above: our first-person perspective is always unique). This also means that our concept of what the Other is feeling is partly based on imagination – even though there is a pre-reflective access to the Other’s feelings due to recognizing their body and its schemas in a shared world, their first-personal experience of those feelings remains unknown to us, and can only be supplemented by imagination. In Stein’s account, this is only a subsequent step, and not necessary for empathy as such (which is simply the recognition of another’s intentionality), yet it does help in our understanding of, and sympathizing with, the Other. Empathy here is simply the recognition of intentionality; the “perceptual-imaginative feeling towards and with the other person’s experiences” (243).

But what happens if the Other’s schemas are not that recognizable – when their actions do not contain significance for us in the sense of being possibilities in the same world that we share?

What if the Other’s frame of experience is so different that we cannot assume that the world they see is the one shared with us? This has been a topic of discussion as well, and a possible solution is what Ratcliffe calls “radical empathy”.

(17)

Many of the topics remain the same in this concept of empathy, with the exception of a crucial one: the assumption that our world is a shared one. According to Ratcliffe, even in mundane empathy we have to let go of our own first-personal perspective in order to realize that the emotion felt is not ours, but the emotion of another (Ratcliffe, 2012, 478). It is here where he introduces Husserl’s reduction, or, epoché; the famous suspension of belief in the world, but simply focussing on one’s experiences thereof. Ratcliffe wishes to use this same concept in order to be able to empathize with people whose frame of experience is so different, that we cannot rely on the presupposition that our world is shared (479). Ratcliffe argues that there can be changes to the kind of experience, not just its content (483), with this he means that the habitual life-world, which is our sense of reality and belonging (real objects are intersubjective, unlike fantasized ones, which are purely first-personal), is not shared: the patient has a different world, simply because the so-called world-horizon is altered due to their illness. In short, the Husserlian idea of a world-horizon, the irreducible source of possible experience, cannot always be taken for granted (482). A psychiatric patient might lose their possibility for experiencing certain things that we take for granted. As long as we take these things for granted in our concept of a “human experience”, we cannot empathize with a patient, making their already isolated existence even worse – if your world is not shared with everybody else’s, whose worlds do seem to merge, this will only add to the misery (484).

To recapitulate what this account assumes: In standard experience there are always things that have meaning, some things more than others. It is this baseline of meaning that Husserl calls the

“world-horizon” (482). Yet, just as breaking an arm can change our content of experience, since we cannot use that arm anymore and things in the world need to be approached in a different way;

changes in the baseline of experience, where things are simply not experienced anymore, are changes in kind of experience. Instead of approaching the same world differently, people with a different kind of experiential framework approach a different world.

Although Ratcliffe’s explanation focusses on depression and schizophrenia, a few topics return that are useful for us. The change in kind of experience is also explained through the moods mentioned above. Every experience is coloured by the mood of the experiencer, also in a patient. However, these moods themselves, which are pre-reflective, are fickle and can change from one moment to another, meaning that even familiar and comforting things can come to appear as threatening or meaningless (485). Radical empathy seeks to empathize with these patients in realizing that the presupposition of a shared world cannot be held (491). Interestingly, even though we have physical, neurological explanations for certain psychological illnesses, such as Alzheimer’s Disease, we cannot treat them the same as other illnesses with purely physical causes.

If we look at serious physical injuries, for instance, we cannot say that their world has changed in the same manner as when someone suffers from depression, schizophrenia or Alzheimer’s Disease.

One could argue that someone who has lost their limbs lives in a different world from someone who still has all of them, but their sense of reality and belonging need not suffer under this – even though one might need assistance with tasks that they before never even thought about, they can still communicate this, and they can still ascribe a certain salience to the objects around them. It is only when we are talking about illnesses that affect our mental states, or pre-reflective schemas, that we can talk about changes in kind of experience, where the ascribing of salience is itself affected. We will return to this later. First we will clarify the need of a habitual life-world further.

In her “Towards a Phenomenology of Empathy”, Nissim-Sabat goes even further, and claims that empathy is impossible without phenomenology (Nissim-Sabat, 1995, 170). She does this by arguing against a positivistic account of empathy, in which experience is conceptualized similarly to a paradigm (167). Similarly to phenomenology, this account seeks to minimize the amount of

(18)

assumptions of reality in order to get a clear picture of the framework of the one empathized with.

However, this account has no clear boundary: exactly how much needs to be given up (165)? Nissim- Sabat argues that phenomenology, with its epoché, solves this problem. By suspending all belief in a world that might exist independently of mind, one focusses merely on experience itself, which is something we cannot doubt (166). Similar to the accounts of empathy above, this epoché also makes being human among other humans evident – just as our experience of a world cannot be denied, the fact that empathy is a perception cannot be denied either (168). This is more radical than Ratcliffe’s approach in the sense that now the task of empathizing with another person consists of making them realize that they are part of a human world. To compare it to Ratcliffe’s account, empathy, for Nissim- Sabat, is always radical, as it is, by definition, the phenomenological reduction. Granted, this article is from 1995, and is written as a response on an article from 1988 (163), meaning that most of the more neurological theories of empathy did not exist in the way they do today.

Aside from showing the complexity of existing together with other humans, this overview of different theories should also serve us somehow. Let’s recapitulate and see how this sense of self, together with the concepts of empathy, can help us in understanding a pathological experience such as an Alzheimer’s patient has.

We’ve started the discussion on Self and empathy because we wished to argue that the patient is still human – something that more traditional phenomenological theories cannot easily allow for. In more modern theories we have found a multitude of interpretations of the Self, all of which contain something that we can use. Neisser’s concept of the interpersonal Self is the most promising – it allows for both the idea that the Self is first-personal and the idea that the Self is a narrative. As we’ve argued above, this narrative Self is social, and therefore not limited to the first- personal Self. In other words, even though a patient may not be able to form a narrative of their life, their narrative is not gone – it is intersubjective, much like Sartre’s concept of the past. On top of this, they can still have first-personal experiences, as Zahavi already argued. Taking a closer look at Levy’s idea of this narrative, we can argue that it does indeed allow us to make sense of our lives, but is not the sense of our lives, since the first-personal experience is still there.

This is where Zahavi would have problems – the first-personal Self is not uniquely human, and therefore not enough to warrant a “human personhood”. However, we are not isolated Selves either – something Zahavi also makes clear – so perhaps we need not rely on such demanding accounts. In fact, a significant part of the treatment of Alzheimer’s Disease is centred around empathy and intersubjectivity, so a theory of Self that focusses solely on the individual’s first-personal experience will always be lacking for projects as these.

That’s all good and well, but we’re not dealing with a face-to-face interaction with another person here. Instead, we have a musical work that is either interpretive, or representative. How are we supposed to empathize with an actual patient through this work? Or must we be content with an imaginative empathy – having some sense of the confusion, giving us a better idea of the patient’s experience?

• Musical Experience

In order to answer this question, we must remain on the same level as empathy – the pre-reflective part of experience. There are multiple possible phenomenological interpretations of music, all of which build off of Merleau-Ponty’s theory of the body. We will have a look at a few of these, and then see how the level at which we experience music might help us in empathy. We remain in this realm of

(19)

philosophy, as most theories on music seem to link it either with aesthetics, culture, or politics, or all of these, see for instance Adorno’s Philosophy of New Music (2006). Phenomenological theories of music are also used for similar explications of culture, such as Cimini and Moreno’s “Inexhaustible Sound and Fiduciary Aurality” (2016) – neither of these theories focus on the individual’s frame of experience, so we’ll need to be more specific.

In Cimini’s “Vibrating Colors and Silent Bodies” she discusses how Merleau-Ponty’s idea of immersed embodiment can help in understanding our way of being in the world in a more musical fashion. Over against a Cartesian idea in which we would grasp objects around us, in Merleau-Ponty’s phenomenology we are immersed in a world that houses objects that enter us, without revealing everything (Cimini, 2012, 359). Merleau-Ponty describes this relation as “harmony”: When we are in a familiar situation, we simply know how to use the objects around us, without having to perform any cognitive act. This knowledge is somehow bodily, pre-reflective (361). Merleau-Ponty does not explain this idea any further though, choosing rather to leave this pre-reflective consciousness in the dark, as something that we cannot actually understand, but have to believe to be magical (366). In less obscure terms one could argue that we simply cannot understand it due to its pre-reflective nature – understanding is reflective, and so cannot access the pre-reflective level, as this simply does not answer to its call.

At first sight, this might, therefore, not seem very useful. However, Merleau-Ponty’s mysticism concerning pre-reflective life can help us understand our own project. Cimini draws out a few examples in Merleau-Ponty’s writing that explain experience and perception in musical terms (such as the idea that pre-reflective consciousness is silent (ibid), or that the performer is possessed by a piece, rather than interacting with it (368 – 369). In short, there seems to be a close connection between bodily knowledge (habit, harmony, familiarity, pre-reflective consciousness) and music. We will need to take a closer look at the experience of music in order to explain how this insight helps us in our project.

If we recall how Husserl explained time-consciousness through listening to a melody, we can better understand how Merleau-Ponty describes it in his later works as well. Initially, Merleau-Ponty argues that music “is too far on the hither side of the world and the designatable to depict anything but certain schemata of Being—its ebb and flow, its growth, upheaval and turbulence” (360). But it is exactly this “ebb and flow” that becomes important in his later writings on it. In her article “Waves of Being” Wang compares this idea of music depicting the ebb and flow of Being to an idea from psychoanalysis, namely Bion’s idea of the unknowable O – an ultimate Truth that we can only see in its manifestations (Wang, 2015, 211). In this sense, music is seen as a manifestation of such an ultimate Truth, namely that of a primordial, unknowable Being from which everything arises. Or, to put it in Merleau-Ponty’s terms: the silence from which meaning is born (213).

Despite this description being very psychoanalytical, it does mention a few things that are fundamental to our account as well. Similar to Cimini’s idea that music is on a magical pre-reflective level of experience, Wang’s account states that music is somewhat primordial. In fact, music is on exactly the same level as temporality, as we shall see in the next idea by Wiskus.

There is a reason that Husserl explains his idea of protentions and retentions through the example of listening to a melody – the fact that we can listen to a melody, that we retain something of the past and expect something from the future is the posing of the problem of succession (Wiskus, 2018, 136). As we know by now, this experience of time is one of unity – there is not an explicit past or future, there are only the horizons, which are “simultaneous” to the present (131). We have already explained this in detail, but there is one interesting notion in Wiskus’ article: the fact that this quality

(20)

of music has become prevalent in Merleau-Ponty’s later writings, exactly for its close connection to temporality (138). In his earlier works, Merleau-Ponty was more concerned with the role of perception and the body – things we could argue to having being only in the present (129 – 130).

In his explanation of the body becoming aware of itself through the reciprocity of visibility, Merleau-Ponty relies on a concept of simultaneity. Time, however, is not a form of simultaneity, but of succession (not of “nows”, but involving a transcendence). This is something that music can express, while vision cannot – as vision does not extend beyond what is. In his later works, Merleau-Ponty’s idea of time therefore changes (133). Based on the same explanation of temporality given by Husserl that we mentioned above, Merleau-Ponty’s idea of time-consciousness and music changes as well (136). It is the melody that evokes the understanding of succession – every note played in a melody

“lingers”, instead of disappearing. We have already explained how Husserl calls this a retention (the keeping present of an actually absent past). It is here that the notion of simultaneity lacks its explanatory power – the past and future are not simultaneous to the present (otherwise we could reduce consciousness to the present sensation). We need a transcendent notion – the horizonal structure; simultaneous, but transcended. Just as Sartre characterizes the past as transcended being (we are the past in the mode of not being it), so the past and future are for Merleau-Ponty ever present absences that are only there due to the movement of the transcendental subject: “[I]t constitutes its sense – its unity – through its dynamic movement that always slips away” (137).

There is, however, not a shift from simultaneity to succession. Instead, Merleau-Ponty comes up with a new concept: “flesh”. Instead of just the body within the world, the flesh is also the subject in time (139). Above we have seen that the subject is something dynamic, yet also fixed – it moves through time, yet has a sense of unity. It is this sense of unity that Merleau-Ponty characterizes as the flesh (137). In other words, the idea that there is a permanent subject underlying the experiences it has, is something Merleau-Ponty found expressed in music. Now, contrary to the idea that this unity is a form of an essential Self, it is more of a transcendent subject – a subject that experiences in the present, but always experiences the horizons of past and future with it as well, as expressed by the melody. Merleau-Ponty sees this transcendence not only in temporality, but also in spatiality: through the idea that the body’s awareness of itself is not something that actually happens, but a potential (the example of touching your hands together is explicative of this; you know you can switch between touch and touched, but this switch never actually happens), also shines the idea of flowing, of never coinciding with Self (or, as Wiskus puts it, always just missing the Self (ibid)), in which a space opens up in which the Other can arise.

In brief, the subject is something flowing, rather than fixed, however, this flowing is itself a unity – a horizonal structure which transcends its absences, which are therefore not quite empty. In his later writings, Merleau-Ponty found this flowing aspect of the subject to be central to both the experience of time and the experience of empathy. It is this flowing experience that cannot be explained simply by (present) perception. Rather, it has to take recourse to an experience of succession, of which music is the most primary expression.

• Summary and Context

For a theoretical path that is focussed on experience and its differences, phenomenology, especially in its more traditional, holistic variations, tends to be too demanding. We have seen how theories tend to make a strict distinction between human being and all other form of being, basing it on a single, fragile aspect of consciousness. If we, however, wish to maintain a more humanitarian and

(21)

existentialist standpoint, we’ll have to filter out these demands, and look for a more ontological, perhaps more mysterious aspect of consciousness.

We have seen that theories of authenticity and the positing of projects were from the outset too demanding – they did have useful aspects, but lost sight of integral differences in pathological frameworks of experience. Merleau-Ponty offered a way out of this by stating that even pathological consciousness is a full consciousness. In order to argue such a thing, however, one must step away from practical approaches towards human life, and look for more structural aspects. We found such an aspect in the concept of “flowing”, the movement of time that we can never quite catch, similar to the fountain in which every single “moment” is integral to the whole – isolating one would destroy the entire fountain (Merleau-Ponty, 445). In short: the extases of past, present and future are secondary interventions upon a singular flowing of temporality. When we state that “time is the sense of our lives” this does not mean the narrative idea of Self; it is not the story we construct through these extases, but the primordial flowing itself. As long as a theory does not centre around this flowing it cannot account for differences in the experiential framework through pathology.

We will need to explain this flowing in greater detail – that is why we had to introduce the link between empathy and music: as the melody flows from note to note, so temporality flows from moment to moment, so does empathy consist of a flowing, a transcendence from me to another. In Scheler we have already seen the primordial nature of this empathy – much like the temporal extases are secondary interventions upon the primordial flowing, so is identifying with another secondary upon the primordial flowing of empathy. The Other needs not be like me, needs not be understood by me, needs not understand me, in order to be empathized with. Their consciousness is, no matter how different from mine, still a consciousness. This will be better explained when we turn to EATEOT.

We will compare our view of empathy to a medical and practical approach towards the patient, problematizing both, and the radical empathy view as well – we simply do not need it once we take the primordial flowing for what it is.

In this analysis, we see how music and empathy partake in this same, primordial, flowing of consciousness. Based on the descriptions given of each stage, we will explore this mysterious realm of flowing. As we’ve compared empathy and music already, we will focus on the schemas; affective and bodily – as these are equally pre-reflective, and can be stated to be “the silence from which meaning is born”.

(22)

Part II

Everywhere At The End Of Time

(23)

Everywhere At The End Of Time

As is already clear, we are diverting from the more traditionally known artworks related to Alzheimer’s. A lot has been written on it, and Utermohlen’s self-portraits are among the most famous representations of the disease. More recently a musical collection has been made that is supposed to represent the decaying mind of an Alzheimer’s patient. This work is Everywhere At The End of Time (2019), by James Leyland Kirby, under the alias “The Caretaker”.

The project is made up of samples from ballroom music (mainly 1910-1920 era). As Kirby started the Caretaker as a fan project for Kubrick’s The Shining’s haunted ballroom scene, we cannot say for sure whether the music was chosen because of the age of most patients, or whether it just worked out that way (since, quite frankly, it does work really well). The first three projects under his alias “The Caretaker”, A stairway to the stars, Selected Memories From The Haunted Ballroom and We’ll all go riding on a rainbow are clearly related to The Shining, later works, such as Persistent Repetition of Phrases, Theoretically Pure Anterograde Amnesia, and An Empty Bliss Beyond This world are focussed on amnesia, though not specifically Alzheimer’s. They also diverge from the ballroom- theme.

Everywhere At The End of Time was the final work Kirby published under “The Caretaker”. The theme of his works had already shifted from The Shining towards memory and its failings. In this final project he took it to the extreme: the alias he had been working under would itself suffer from dementia, and all the works made previously under that name would serve as memories now distorted (Doran, 2016). As the work is divided into six stages, the most predominant interpretation is that The Caretaker is suffering specifically from Alzheimer’s Disease, which is usually divided in seven stages, of which the first is a stage without symptoms, which would have its musical representation in the original works.

Throughout the six stages the cognitive decline worsens, which is musically represented through distortions, cuts, abrupt transitions and repeating patterns. A melody might return in every stage, but so distorted that it is not recognized as the melody heard earlier. The contrary happens as well: a melody might return vividly enough to clearly recognize it, but not to know exactly from which stage, let alone which piece. Through these confusions we, as listeners, are drawn into a web of tangled melodies and sounds, some of which seem nostalgic and soothing, while others range from annoyance to disturbance. Because of this, many listeners seem to experience empathy, or even sympathy, with this representation of a possible patient’s mind. Listeners who know the disease from a loved one sometimes claim to recognize certain feelings of dread and confusion in the music.

Based on the framework set out above, we will explore Everywhere At The End Of Time, asking how it is able to evoke these feelings (if it is not simply something people can project these feelings upon), and through this question ask how we can empathize with a patient better by adopting a phenomenological framework, instead of a more practical, medical and causal one. As the work is clearly divided into six stages, each with its own description, we will follow this structure, offering a triptych-like structure to each: What would a medical/causal explanation be for these symptoms?

What would a practical approach towards the patient advice? (As a caretaker, what do you need to keep in mind?) How can our understanding of empathy and phenomenology explain these approaches, or add to them? Is there something this work can offer when seen through our framework, that a more practical approach might miss?

As we have not been able to explain the topics of (a healthy) Self, intersubjectivity, empathy, and musical experience to any conclusive point, this analysis of Everywhere At The End Of Time will only complicate matters further. However, we do not need a full understanding of Self – we have

Arthur Meijer 11283327 Arthurdm@planet.nl Dr. C. Skirke The Disintegration of Sense

The Disintegration of Sense

Contents

Introduction

Part I

Alzheimer’s Disease

Phenomenology of Disintegrating Experience

• Temporality and Temporal Experience

• Self

• Intersubjectivity and Empathy

• Musical Experience

• Summary and Context

Part II

Everywhere At The End Of Time