Full transcript
0:16Hello everyone. I welcome you to my
0:19course introduction to medical
0:20humanities. This is lecture 30 and today
0:23the title of my talk is robbed out of
0:25mind reflections on Alzheimer's in
0:28select Indian literary narratives.
0:30And for the purpose of
0:33mapping how the reflection of
0:36Alzheimer's take place in which one is
0:39in many sense losing one's mind. I have
0:42chosen two narratives, but before coming
0:44to that, let me quickly share an
0:47overview of what I'm going to do today.
0:49Now, for the purpose of this lecture, I
0:52choose two literary texts. I primarily
0:54discuss both. One is Anuradha Sharma
0:57Pujari's Jal Swabi and the second is
0:59Avni Doshi's The Girl in White Cotton.
1:02Uh
1:03I then deal with what I mean by
1:06cognitive decline and the loss of self.
1:08So, when the onset of Alzheimer's
1:11happens, how does this play out along
1:15with cognitive decline, stigma, and the
1:17erosion of dignity followed by
1:20persistence of personhood and the
1:22embodied self? And how the entire
1:25narrative is a shift from being
1:28patient-centered to person-centric and
1:30finally, how compassion works as the
1:34restoration of personhood.
1:37Let me first talk about these two
1:39literary text, Jal Swabi by Anuradha
1:42Sharma Pujari, which came out in 2018,
1:45and it's the narrative of an 80-year-old
1:49woman, Subarna Jyoti Devi, who already
1:53has a medical condition called
1:54hypochondriac delusions. This
1:58gets problematic when
2:00there is an onset of Alzheimer's,
2:02specially after the death of her husband
2:05and her eldest son. Now, this creates a
2:09kind of a spiral dependency and
2:11passivity that the book
2:15that the novel reflects.
2:17The second novel is The Girl in White
2:20Cotton, published in the UK as Burnt
2:22Sugar by Avni Doshi. And in this
2:26particular novel, you find the
2:28protagonist Tara and her relationship
2:31with her daughter Antara,
2:33how that gets
2:36very complicated when there is
2:39uh the onset of Alzheimer's for Tara.
2:42The novel traces the journey of this
2:44independent woman. She was extremely
2:47fierce and independent as a young woman,
2:50but when Alzheimer's happen, this
2:53changes how she perceives her own life,
2:56how she wants to make the meaning of her
2:58life. So, these are two uh books or two
3:02novels that I'll be dealing with on your
3:03screen. Let me first go ahead and talk
3:05about Jal Sobi. So, in Jal Sobi, you
3:08find that there is a slow deterioration
3:11of 80-year-old Subarna Devi who is
3:14suffering from Alzheimer's and
3:17hypochondriacal delusions. Now,
3:21when this happens, she starts
3:23forgetting. Now, you know about
3:25Alzheimer, how it is how this makes you
3:28forget everything that you have done in
3:31the past. It's a very problematic
3:34disease, so to say, in that sense.
3:36So, the narrative highlights a stark
3:39divide between people with memory and
3:41people without memory. Meaning that what
3:44happens to a person
3:46who starts losing
3:49the memory that
3:51constructs the person's identity. Now,
3:53we are what we are because what we
3:56remember, what our mind remembers. And
3:59if mind doesn't remember anything of
4:01what we can make out of our identity,
4:04how do you recapitulate that? How do you
4:07How do you identify yourself? So, your
4:10own identity in the loss of memory is at
4:14stake. So, this is the kind of binary
4:17she creates in the novel. Apart from
4:20that, you also find the normalization of
4:22infantilizing behavior towards the
4:25elderly with Alzheimer's. So, when
4:28uh there is Alzheimer's that happens, uh
4:31the person becomes like a child. And
4:33therefore, the elderly people who are
4:36whosoever are there, they treat the
4:39person like a baby because uh they can
4:41be uh
4:43other kinds of things that might affect.
4:45So, when you find this
4:49behavior, it's absolutely normal because
4:51delirium and forgetfulness are treated
4:54with impatience and indifference and
4:56reflecting a broader social sensitivity
4:58towards age cognitive decline. So, when
5:01aging happens, this can also come with a
5:04disease like this. And how does other
5:07people around you respond to it?
5:09Probably this happens that they start
5:10treating you like a child. So,
5:13Suvarnajyoti's life also
5:16gets conditioned in which her diagnosis
5:21is leading to the erasure of her
5:24identity and gets and it gets deepened
5:27in in due course of time. So, her life,
5:30which was once in control of her,
5:31doesn't feel like her own any longer.
5:34And the illness of Alzheimer's strips
5:38her of her agency, dignity, and
5:41decision-making power. So, she comes
5:44from a traditional Assamese family, and
5:47she's conditioned to believe that a
5:49woman's life is expendable. So, when all
5:53these reflections
5:55or when all these characteristics of
5:58Alzheimer's starts playing out in her
6:01life, she just loses her identity, and
6:04there is absolutely no decision-making
6:07power that she has.
6:09And therefore, we see in the novel how
6:13there is a reshaping of her body and
6:17mind, not just that, but also how the
6:20household
6:22entire emotional architecture is going
6:25forward. Now, she was the strength of
6:28the family, and now
6:30the entire equation of the family is
6:33changing because
6:34the home that she once occupied as
6:39the a member full of strength is now
6:42becoming a site for medical routines,
6:45emotional strain,
6:47and also strange when people just leave
6:49and go because it's very difficult to
6:51cope up with a person who just doesn't
6:54remember anything.
6:56In The Girl in White Cotton, you find
6:58Tara,
7:00and many pages of Tara are
7:04many pages of Tara is dedicated
7:07in underlining how Tara was once upon a
7:11time a very fierce lady.
7:14And at 70, almost when she's nearing 70,
7:17she's diagnosed with senile dementia.
7:21Now, haunting aspect of the plot is
7:24Tara's awareness of her own collapse.
7:27So, it's very gradual watching memories,
7:31language, and bodily control all slip
7:34away from her. And therefore,
7:37when she meets her daughter, Antara,
7:40who's the primary caregiver for her and
7:43also the narrator of
7:45this particular novel, we find that
7:49the inability of daily things that Tara
7:53once did, even she forgets that. And
7:57that leads her to a state of
7:59helplessness. She's unable to
8:01kind of come to terms with. She forgets
8:04how to speak, control her bodily
8:06functions, and even breathe
8:08independently. The body
8:11she once knew once upon a time
8:14is not known to her any longer because
8:17now the identity of her body, what she
8:21knows about her body is also negotiated
8:25through how her daughter paves it
8:27through.
8:30The first theme that we can discuss in
8:33the context of be both these novels is
8:36how cognitive decline is a loss of self.
8:40Few points I will make here, like how
8:43when you look at Alzheimer's through a
8:46biomedical lens,
8:48it equates cognitive decline with the
8:50erosion of death of personhood. So,
8:53there is no more the person left in you
8:56when there is no memory, when mind
8:59chooses not to recognize you as a
9:01person, it's not just the decline of
9:07the person physically in some sense,
9:10it's a cognitive decline and that
9:13erodes
9:14the person in you.
9:17The other thing that is important here
9:19is how the individual's distinctiveness
9:22and sense of continuity are seen as
9:25fragmented. Because you remember your
9:28life in fragments. So, one of the
9:31prominent features of Alzheimer is that
9:34you completely may forget at some time,
9:37but then you might just remember
9:38something. So, what happens? It's a
9:40fragmented two and fro kind of a
9:42situation. So, the sense of continuity,
9:45the chronology in which you think of
9:47your life is gone, and there are only
9:50fragments in bits and pieces that you
9:52remember.
9:54Also, the speech and coherence part,
9:56because language
9:58is something for by which you remember
10:02what has happened. This cognitive
10:04degeneration risks stripping the
10:06individual of social recognition as a
10:09rational subject. Now, interaction, how
10:11do you find how do you form a social
10:13community? It is through language. So,
10:15because cognitive degeneration is taking
10:17place, even that leads to the loss of
10:20language, hence loss of self.
10:23In the medicalized model, it reduces the
10:26person only to biological condition. So,
10:30the
10:31onset of Alzheimer's is more than that.
10:34How? Because
10:36it requires constant supervision,
10:39limited autonomy through
10:40micromanagement. There is somebody who's
10:42a
10:43caregiver, that that that person is
10:45required, and in this sense, uh we find
10:48that the whole network of caregiving is
10:52is uh crucial to the caregiving aspect
10:57of Alzheimer's patients.
10:59Disability studies
11:01challenges this reductionism, because
11:03they argue that embodied habits,
11:06emotions, and relationships continue to
11:08sustain personhood despite the cognitive
11:11failure, which means that
11:13even if there is Alzheimer's, even if
11:15there is
11:17a loss of memory, still that person,
11:20because the person is there,
11:23that becomes important. Like, it's not
11:25that the loss of memory is also the loss
11:28of self. So, there is a debate over
11:31there in the medical and social model.
11:35If you look at how the textual
11:37references take place in Girl in White
11:40Cotton, Tara's painful awareness of
11:42watching as things slip away reflects
11:44the fragmentation of self-consciousness.
11:47I explained earlier that she remembers
11:49her past in bits and pieces, and that
11:51for her is a fragment of
11:53self-consciousness.
11:55In
11:57similar line, life isn't hers anymore. A
12:00very powerful sentence, if you see. Uh
12:03we don't realize the importance of our
12:06memory until we start losing it. A clear
12:09indication that how just the absence of
12:13one component from our body, which is
12:16mind, and within mind also one
12:19component, which is memory, if Subarna
12:22Jyoti is losing that in Jal Sobi, how
12:25she thinks
12:26it's the loss of entire life and marks a
12:30rupture in her sense of ownership over
12:33her own existence.
12:36Additionally, we find that Tara is
12:39unable to perform everyday tasks like
12:41using the phone, paying the bill, and
12:44recalling her address. This signals the
12:48rational cognition, how to make meaning
12:51out of your daily existence, where to go
12:55when you want to take bath, where to go
12:57when you want to have a cup of tea,
12:59where to place the book that you are
13:02reading, how to remember the alphabets.
13:04All this, when you forget,
13:08how do you go through your life?
13:10Similarly, in Subarna Jyoti, her
13:12hypochondriacal delusions and
13:15disorientation illustrate how reasoning
13:17faculties weaken, destabilizing coherent
13:21uh selfhood. So, same with Subarna
13:24Jyoti, even her reasoning faculties have
13:27weakened. And these things lead to the
13:29loss of agency in Tara, in the girl in
13:32white cotton, Tara becomes dependent,
13:35described as a battery operated doll.
13:37So, as much as Antara will do things for
13:40her, that much Tara will move, though
13:42Tara is the mother and Antara is the
13:44daughter. In Jalsaghar, Subarnajyoti's
13:47life becomes structured around medicine,
13:49supervision, stripping her of
13:52decision-making power, and
13:56means that you be there, but you remain
13:59passive. From being active
14:02person in the family to being passive,
14:04it's a difficult journey, but that is
14:06how
14:07she starts losing her agency in the
14:09family.
14:12Additional
14:13textual references if we take up, then
14:16both the novels show how cognitive
14:18decline entails loss of social
14:20authority. So, even in society you do
14:23not have any power because you don't
14:26remember
14:28your identity in that society. So, Tara,
14:32like I said earlier,
14:33there are several pages dedicated to how
14:36fierce a woman she was, very
14:38individualistic, but now there is
14:40nothing left. So, she sees that
14:42indignity in her daughter's eyes because
14:45when she was very
14:47young
14:48and
14:49she was expecting Antara, she just
14:53leaves her husband and goes to live in
14:55the ashram.
14:56And Antara doesn't have good memories of
14:59her mother from that ashram. So,
15:02initially when we look at
15:05Jalsaghar, Subarnajyoti raised within
15:07patriarchal codes experiences
15:10intensified erasure. So, patriarchy in
15:13many ways because she comes from a
15:15traditional family, so there were many
15:18codes she was assigned to do and now
15:21because there is Alzheimer's she is
15:25I mean
15:26erased out of all the spaces where she
15:28was extremely important.
15:31Now, this also leads to strain in
15:33relationships and in Girl in White
15:36Cotton we find Antara's description of
15:39her mother as a rotting vegetable
15:42reflecting emotional alienation and the
15:44breakdown of relational reciprocity.
15:47In Jal Sobi Mani's horror at her
15:50mother's transformation exposes the
15:53painful divide between the memory of the
15:56former self and the present decline. So,
15:59she's unable to map what the mother was
16:03earlier and how she is now clearly
16:06indicating that one doesn't remember the
16:09person that one is.
16:12If you look at how this cognitive
16:14decline is also associated with dignity
16:18the erosion of dignity and stigma, you
16:20find that there are
16:22two core identity markers, self-worth
16:25and autonomy, and both
16:29face a sharp decline when when the loss
16:32of cognition happens.
16:34So, awareness of Alzheimer's stigma
16:37produces shame and social withdrawal.
16:39So, she doesn't remember. So, it's more
16:42than the public shame, it is the
16:43internal shame, the individual shame
16:46that has been internalized. So, you we
16:49find that uh Subarna Jyoti desires to
16:52return home from her daughter's place
16:55reflecting a longing for independent
16:58identity, but she is reminded she's now
17:01a responsibility and she cannot stay
17:03alone. On the other hand, Tara's illness
17:06strains her relationship with Antara
17:09because dependency of Tara on Antara
17:12disrupts the family equilibrium. So, we
17:14find that there is intense
17:18sense of dependency burden and prolonged
17:22suffering in old age.
17:25Uh when we talk about embodied uh
17:28selfhood vis-a-vis cognitive loss,
17:31uh one theorist that we cannot forget is
17:35Maurice Merleau-Ponty, who argues that
17:38self is not confined to rational
17:41thought, but is grounded in the lived
17:43body.
17:44Very contradictory idea to how it is
17:49perceived. So, it says that self is not
17:51just about rational thought. It's the
17:54habit. The body remembers.
17:57So, the body remembers what all it has
17:59gone through. So, even when memory and
18:03cognition decline in Alzheimer's,
18:05embodied presence like
18:08posture, tone, and gesture continue to
18:11express the person that you are.
18:16The body, according to Ponty, retains
18:21sedimented habits. How one folds hands,
18:24reacts to music, prepares food, or
18:27responds to affection.
18:29Which means that there are certain
18:32things that we have been doing for the
18:35longest period of time, and
18:38they are so much part of our mental
18:41makeup that they do not need very active
18:44rational thinking to do it.
18:46And hence, these activities just can be
18:49remembered.
18:50Now, these habitual patterns persist
18:53even when explicitly memory fails. And
18:56that is why, by grounding identity in
18:59the lived body,
19:00the one
19:01which is experiencing life every day,
19:04rather than only rational thinking,
19:06Ponty challenges the idea that cognitive
19:09generation completely erases the self.
19:12In fact, that this is the other way
19:14around.
19:17Quickly I will take up the persistence
19:19of personhood and embodied self in
19:22both the novels. If you look at Girl in
19:24White Cotton, we find that Tara forgets
19:27the language and daily tasks. She
19:30continues to express emotional
19:32intensity, guilt, and longing. So,
19:35she doesn't know the language and
19:37doesn't remember what to do, but what
19:40she remembers out of that in the process
19:43of remembering
19:45what
19:46she does is that she expresses
19:49intensity, anger, and guilt.
19:52In Jalsaghar, Subarnajyoti's reaction is
19:55of suspicion, hurt, and pride, signaling
20:00that her emotional core remains active
20:03despite confusion. So, you see how both
20:06the characters are responding
20:08differently.
20:09Now, in
20:11Body Subject Action by Ponty, we find
20:14that Tara's habitual gestures, her tone
20:17of authority, her instinct to advise.
20:21Now, this remains, and Antara
20:24demonstrates embodied patterns that
20:26endure beyond rational coherence.
20:28Similarly, in Subarnajyoti bodily
20:31disposition, her firm temperament and
20:33resistance stance reflect sediment
20:36habits of one's self-reliant woman. So,
20:38she remembers that at one point of time,
20:41she was the self-reliant woman,
20:43definitely.
20:44And therefore, even while aware of her
20:47decline, Tara urges Antara to focus on
20:50her own life. So, she remembers in some
20:53way
20:54how fierce she has been because she
20:57says, "You please take care of your own
20:59life, to focus on your own life."
21:01Attempting to perform maternal care,
21:03Subarnajyoti resists the disabling gaze
21:06by invoking her dignified past. So, both
21:09the characters, in case of Girl in White
21:12Cotton, Tara is concerned that Antara
21:15should focus on her life. In Dal Subha
21:18Subarna Jyoti, she's resisting the
21:20disability gaze, in which she's
21:22dependent completely on somebody, uh and
21:25she remembers her dignified past, which
21:27was very full of autonomy.
21:29Now, both women, through gestures and
21:32emotional insistence, resist the erasure
21:36of selfhood.
21:37Now, broadly speaking, when we think of
21:40person-centered care and preservation of
21:43personhood, it means that the self is
21:45not confined to rational thought, but is
21:48grounded in the lived body. The body
21:52uh remains, and therefore, even in the
21:54absence of rationality, the person is
21:57there.
21:58The body retains sedimented habits, all
22:01these things that I spoke of earlier,
22:03but what I I primarily want to point out
22:06here is that Ponty challenges the idea
22:10that cognitive degeneration completely
22:12erases the self. Instead, he suggests
22:15that personhood changes, it becomes more
22:18emotional, bodily, and fragmented, but
22:21it does not disappear. So, there is a
22:23sense of dependency, there is a sense of
22:26uh memory loss, there is a sense of
22:29vagueness, there is indeed a sense of
22:33helplessness, but within all these
22:37supposedly chaotic characteristics that
22:40you can note down, the person doesn't
22:42disappear. The person is definitely
22:44there. It's a person-centered care that
22:47one starts giving.
22:51Therefore, four quick points I will
22:53make. The care triad framework, which
22:56means that the division between self in
22:58health and self in illness often results
23:01in focusing on disease rather than
23:04identity. So, how does that operate
23:06within the care triad framework? And we
23:09must refrain from biomedical
23:12reductionism. So, Alzheimer's patients
23:15often risk being uh reduced to just
23:18their symptoms. Uh and that can threaten
23:21their dignity and personhood, who they
23:23are.
23:24In practice, both the novels
23:27highlight
23:28difficulty in seeing the person first
23:31and the illness second. So,
23:32automatically you see the symptoms of
23:35Alzheimer's first. And
23:37in both the novels, we also find how
23:40caregiving generates guilt, exhaustion,
23:43and fear as daughters witness the
23:45gradual decline of their mothers.
23:47Now, this is very understandable also
23:49because when it comes to your parents,
23:52you just don't know how much caring is
23:55enough.
23:57And
23:58the caring for parents happens in such a
24:00way where you are also aging and the
24:03parents have also sort of aged. So,
24:07even your body is on the verge of
24:10accepting the
24:12decline that's happening. And therefore,
24:15there is exhaustion and guilt, but there
24:18is also a sense of responsibility. So,
24:20there all these emotions
24:23put together create an emotional anxiety
24:25for the caregivers, something that I
24:27will also discuss when I discuss the
24:29caregiver fatigue.
24:31Compassion then is restored as
24:33personhood. You find that Manju in
24:36Jasubhai, uh she moves from being
24:38impatient to being empathetic. She
24:41becomes empathetic towards her mother,
24:44recognizing her mother's enduring
24:46spirit, and promising compassionate
24:48care. Whereas, Antara in Girl in White
24:51Cotton, despite not being in great terms
24:54with her mother, she assures Tara and
24:57assumes responsibility of the caregiver
25:00role.
25:01In both the novels, we find the role
25:04reversal. So, mother was once upon a
25:06time looking after their daughters. Now,
25:08it is the daughters who have taken the
25:09role of their mothers.
25:11So, despite the memory fading away, one
25:15values what remains, the emotional
25:18connection, affection, and patience
25:21reaffirm the dignity of the person who's
25:24losing the memory. And finally, when we
25:27see that person as a person, you find
25:30that there is compassion,
25:31emotion-centered care that sustained the
25:34person
25:36despite the memory loss.
25:38Thank you so much. That is where I will
25:40end, and we take up another unit in the
25:43next week.