The diasporic experience of cancer: An inquiry into Anita Moorjani’s Dying to Be Me

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Renuka Shyamsundar Belamkar
Kristu Jayanti College, Bangalore, India
e-mail: rbelamkar6@gmail.com

AGATHOS, Volume 15, Issue 2 (29): 421-430, DOI 10.5281/zenodo.13954238
© www.agathos-international-review.com CC BY NC 2024

Abstract: The narratives of illness attempt to capture the well rounded experience of illness which include the patient’s life before and after the illness. They present the patient as an individual with a complex structure of their many identities that interact with each other. These narratives draw attention towards the effects and role of the patient's identity and environment in their experience of trauma and healing. They expose the nuanced and complex pathology of the illness experience which does not begin and end with the trauma of the physical body. In the context of prolonged experiences of chronic illness the changes it demands of the patient are life altering. It does not only affect the physical health of the individual but also impacts the various aspects of the personal and even professional lives. The layers of the patient-author’s identity such as their gender, ethnicity, religion, nationality etc. impact the experience of their trauma of illness. In this context the paper attempts to analyse the connection and role of the patient’s diasporic experience into their journey of illness through Anita Moorjani’s Dying to Be Me. The paper will employ frameworks from diasporic studies- Homi Bhabha’s work on the third space to analyse the impact of her diasporic identity on the experience of illness and healing.

Keywords: health/medical humanities, trauma, autopathography, patient-authors, cancer, NDE, identity

Anita Moorjani’s book Dying to Be Me is a popular autopathographical account about her experience with cancer and her unusual NDE (Near Death Experience) that led to her recovery and healing. The book does not limit itself to the parts about her NDE and subsequent healing but begins with her childhood experiences. Moorjani’s account is one among the many narratives of illness that came to the forefront in the last few decades. These narratives of illness put forth an experiential evidence of the encounter with illness which is often not part of the clinical records. They create a space for the patient to become the subject of their stories and not remain an object of the clinical records. The act of narativising their experience of illness allows them to bring together the various threads of their life which were disrupted by the illness.

 The narratives of illness attempt to capture the well rounded experience of illness which includes the patient’s life before and after the illness. They present the patient as an individual with a complex structure of their many identities that interact with each other. These interactions are affected by the illness which introduces the identity of the patient into the existing structure. The layers of the patient-author’s identity such as their gender, ethnicity, religion, nationality etc. impact the experience of their trauma of illness. In this context the paper attempts to analyse the connection and role of the patient’s diasporic experience in the journey of illness through Anita Moorjani’s Dying to Be Me. The paper will employ frameworks from diasporic studies to analyse Moorjani’s identity as an Indian Sindhi in Hong Kong and its impact on her experience with cancer and NDE (Near Death Experience).

 Moorjani’s narrative is divided into three sections which can be read as the three phases of pre-illness, illness and post-illness life. These sections are further divided into chapters which cover the overall arc of her life beginning with her childhood experiences. The narrative draws attention to the impact of factors such as culture and environment on her experience of illness. These influences also shape her identity and her belief system. Through the chapters a connection can be observed among the three phases of her life. It challenges the isolated lens through which the illness experience is viewed.

 In the first chapter “Growing Up Different” she explores the nature and nuances of her diasporic experiences. Her father, because of his business, travelled around the world before settling in Hong Kong when she was two years old. She was exposed to three different cultures and languages there. She says her “childhood was a mixture of the east and west” (Moorjani 2016, 12). In this chapter she traces the shaping of her religious and cultural identity as a child. She writes about her belief in the concepts of karma and nirvana because of her spiritual exposure to her roots, which also taught her about meditation and chanting. These methods, as she describes, help to “cleanse the mind of impure thoughts and assist us in our quest for enlightenment.” (Moorjani 2016, 15) She even addresses that meditation helps in developing awareness that each individual is more than their physical self. She relies on this philosophy during her NDE and subsequent healing phase. The impact NDE leaves pushes her towards a changed form of living which derives help from her past. She later revisits some of the learning she was exposed to during her childhood about spirituality. Her diasporic experience does not occupy the central focal point in her narrative. It lays in the background as a facilitator of the larger narrative of her life and provides an insight into the background of journey. The elements of diaspora can be read through her narration of illness and healing and not vice versa. This research does not look at the text as a diasporic narrative but uses the framework of diaspora to understand its influence on the experience of illness and healing.

 Moorjani’s childhood experiences can be placed in the third space that Homi Bhabha explained in his work The Location of Culture. In the text he addresses the position of in-betweenness of cultural identity which according to him is not framed or defined under any one culture. But, is a hybrid space and an on-going process that does not assimilate under any fixed identity. “It is the inbetween space that carries the burden of the meaning of culture, and by exploring this Third Space, we may elude the politics of polarity and emerge as the others of ourselves.” (Bhabha 1949) Moorjani forms her identity at the intersection of the many cultures and religions she was exposed to during her formative years. “The idea of hybridity works for all kinds of subject positions: any place where you can cross categories, inhabit two subject positions at once, or find the space between defined subject positions, is a place of hybridity.” (Klages 2006, 159) Her identity goes through a constant change in the background of her larger narrative of illness. She experiences being in this point of criss cross because of the conflicting nature of cultures and religious beliefs around her. Her religious identity was at conflict due to the exposure to two different and contrasting schools of thought and beliefs.

 Moorjani lacked a definitive understanding of her identity due to her position as a diaspora. This pushed her towards the need to be assimilated in the host culture. Narrating her first day of getting ready for school she describes the new uniform which is a symbol of her complex identity which always made her stand out. The uniform provided her a sense of similarity to those around her, it provided her with a sense of belonging. It allowed her the ability to blend into the surrounding. Though she physically and visually assimilated, the questions about the religion made her feel differently. Her classmate asked if her family went to the church every Sunday, to which she responded by saying that they went to a temple instead on every Monday evening. This lack of assimilation which was a product of the cultural atmosphere around her which finds a parallel in her post trauma/healing phase where the adult chooses to not want to assimilate in her society. The healing phase that begins with her NDE also weaves a stronger sense of self and identity for her.

 The NDE provides her with a new purpose to live and a different understanding of the self. She begins to reject the social conditioning and recognise the self without any boundaries. She reevaluates her own belief system post NDE and questions herself, “Is it purely cultural and social conditioning? It might have applied to me at some point, but does it still hold true? … In some situations, maybe, but in a lot of cases, the answer was a definite no.” (Moorjani 2016, 114) Her NDE helps her chanelise her experiences towards the process of healing. Where the child in school wanted to be part of the surrounding host culture and share the identity, the adult post NDE did not feel the need to do so. Her experience post NDE delineates the wavelike journey of the formation of her new self and identity. Homi Bhabha in his text The Location of Culture talks about the formation of the self through an inward experience, he says that it is

... a measure of the ‘me’, which emerges from an acknowledgement of my inwardness, the depth of my character, the profundity of my person, to mention only a few of those qualities through which we commonly articulate our self-consciousness. (Bhabha 1949, 48)

The self emerges and grows post her NDE drawing from the strength of self she gains through the interactions she narrates to have had during that period. Though the frame of this experience is similar to the childhood journey of finding her identity it differs in the perspective through which she gazes at it. The non-linear nature of the healing process shows her struggle of finding herself post the illness and mirrors her childhood struggle of wanting to assimilate. While the struggle of childhood is directed outwards, the adult post NDE directs the gaze inwards, “I understood that true joy and happiness could only be found by loving myself, going inward… Previously when I felt lost, one of the first things I did was to search outside for answers.” (Moorjani 2016, 115)

 Moorjani’s identity is in a continuous process in what Bhabha (1949) calls the third space. He defines this space as that “which gives rise to something different, something new and unrecognisable, a new area of negotiation of meaning and representation.” Her struggle with her experiences as a diaspora passively influences the self. The identity of being a cancer patient adds to the existing multitude of identities that are in a dialogue with each other in the third space. They make room for a new identity of the patient-authors that is framed as a product of the interaction between the existing life experiences and the experience of illness. The personal and the socio-cultural aspects of the patient’s life influence and play an integral role in the journey through illness and healing, “... illness is the way in which an individual interprets his or her experiences with the use of cultural categories and the influence of social relations.” (Kleinman et al. 1995; Young 1982)

 Moorjani fed into the guilt of being a patient due to her social environment. She thought of herself as a problem for the parents which prevented her from sharing the experience of illness at home; she pretended to be happy and adjusted well. It furthered the struggle to be accepted in the surroundings that she was a part of. She recollects the parts of her childhood where she craved a sense of belonging. Her diasporic identity furthers her anxiety and her sense of uprootedness. She longs for a space she can assimilate and fit within. She fights the feeling of an outsider which takes a toll on her mental and emotional self. She says, “I wanted more than anything to fit in, to be accepted and liked. I couldn’t change my skin colour or race, and it made me feel so helpless!” (Moorjani 2016, 20) Due to her diasporic identity she feels different everywhere. She does not feel the sense of belongingness in either of the spaces. She mentions not wanting to fit into the ideal image of an Indian that her parents wanted her to conform and mould into, “But I don't want to be more Indian! I want to be more like my classmates! I thought.” (Ibid, 21) Her struggle with identity spreads across religion and culture. She internally fought back the practices her parents forced her into. She initially did not want to attend the vedanta classes that she was supposed to attend with the others her age from the same community. But she began to enjoy the discussions about spirituality and became popular among the others; though she still wanted to be accepted by those in her school. She inclined more towards being accepted into the culture of her hostland, “How I wish I could merge everything and be as popular at school as I am with my Indian friends… Why can’t my schoolmates see in me what my Indian friends see?” (Moorjani 2016, 22) In Moorjani, the multifaceted identity initially causes confusion and lack of clarity regarding her beliefs and her own sense of self. The narrative traces her journey of finding the meaning through the NDE. It is through that experience that she finds and holds on to a reason to live.

 In the chapter titled “Seeking Salvation” Moorjani explores her response to cancer. She acknowledges and explains the intense emotions she felt as she began to accept the knowledge of her illness. She presents a detailed account of the ways in which she responds to the attempts of curing herself, she explores various types of healing. She goes to Pune, India to learn about Yoga and ayurveda. She spends six months under the guidance of a master following strict diets, trying herbal remedies with a routine practice of yoga. She acknowledges the improvement in her health. She begins to feel better and the master she was under also helps her ease her fears of cancer. By the end of her stay there, both her and the master were convinced that she had healed from cancer. This leads to her feeling positive and victorious. Even on her return she was told by many that she looked well. But not long after her return when they enquired about her treatment and stay at pune, her mode of healing was met with concern and negative remarks. Most remarks questioned the authenticity of the mode and denied the belief that cancer could be treated through this mode. These remarks and opinions begin to affect her own sense of positivity and healing allowing the fear to return and reside in her psyche. As a result of the responses she receives on her previous attempt at healing, she attempts to understand Traditional Chinese Medicine (TCM). But this mode was in direct contrast to everything she learned and practised at the yoga centre. This contradiction and confusion led her to try Western Neuropathy. The lack of inclination towards a fixed mode of healing can be viewed as a reflection of her own identity as a sindhi diaspora. The nature of heterogeneity in her Sindhi identity is reflected in her experience of healing. The confusion she felt identifying and choosing between two religions as a child resurfaces in her contradictory choice of healing methods.

“I worked on forgiveness therapy… I travelled through India and China, meeting Buddhist monks, Indian yogis, and enlightened masters, hoping that they’d help me find answers that would lead to healing. I tried being vegan, meditating on mountaintops, yoga, ayurveda, chakra balancing, Chinese herbal medicine, pranic healing, and Chi Gong. But despite all this, my cancer just kept getting worse. My mind was in a total state of confusion as I continued to lose myself further and further in different healing modalities… (Moorjani 2016, 135)

The various healing techniques and approaches that she explores are largely associated with the cultures that she was exposed to as a child. Hong Kong, being the hostland, was dominated by the Cantonese Cultural practices that exposed her to the knowledge of modalities such as Chinese herbal medicine and Chi Gong. Both of the modes trace their roots and presence in the Cantonese culture, Chi Gong is a part of an ancient chinese tradition which uses exercises and postures using the mind, body and the spirit to improve health and well being. Yoga, chakra balancing, meditation and ayurveda are often associated with the culture of her homeland, India. The influence of both the spaces contributes to the making of Bhabha’s third space where she embraces her hybridity in relation to her perspective towards life. The chapter dedicated to the narration of her healing journey post NDE does not weigh one culture of practice over another but instead presents an inclusive and hybrid understanding.

 The response, that follows her denial and a refusal of the illness, is a sense of acceptance that pushes her towards attempting to heal herself. The contracting points of while she accepted the illness she lacked knowledge about the illness which, in desperation for life and health, forced her to research and try various modes of healing without staying with any one mode. In hindsight she wishes that she had gone back to Pune and resumed the same treatment when she was met with the same fear and negativity due to the kind of responses she got on her return to Hong-Kong. “In hindsight, when that began to happen, I should have gone back to India to regain my health again. Instead, I actually started to be influenced by the scepticism I was facing over my choice of treatment, so I remained in Hong Kong.” (Moorjani 2016, 51) As a result of the many contrasting healing modes she began to stress about and fear everything. Due to the contrasting diets that they all presented she stopped eating and feared food. The confusion further fed her deteriorating health. She began losing control over the mind, self and the body. The fears of the self began to affect the body negatively.

 The body began to define and affect her emotional and psychological self. She began to withdraw from reality and by extension from people and the conversations. She wanted to escape from every detail that spoke of or forced her to confront cancer. The truth haunted and forced her to rely on different reasons to make sense of the trauma that had begun to consume her. The cultural ideas that attempted to provide a reason and understanding to her illness heavily relied on the concept of karma. Moorjani, had also believed in karma due to which when people used karma to describe the cause of her illness she began to feel uncomfortable and ashamed that she deserved the suffering she was going through. This further took away any hope left within her exposing her to the illness furthermore. “It seemed as if I was being judged, and it also made me feel helpless. If this is retribution for something I did in a previous life, I wondered, how can I change it? What can I possibly do about it now? Thoughts like this would leave me feeling completely hopeless about my situation.” (Moorjani 2016, 52)

 The cultural belief systems made it difficult for her to look through the trauma into a possibility of healing. It coloured her understanding of the illness as a pathological condition. “Cultural beliefs and behaviours influence the individual’s perception of disease aetiology, illness and disease labels.” (Turner 1996, 717) She failed to see the anatomy of the illness and began to let abstract philosophical concepts consume and defeat her willingness to heal. She isolated herself into her own cage and refused to meet with the external reality that existed beyond her illness and trauma. She began to deny any kind of encounter with the external world, shrinking her life experience. This further led her towards a state of hopelessness and disillusion about life. She questioned the very essence of living and the reason behind wanting to heal and live a healthy life. She began to lose purpose in life and prepared to give up. The suffering, physical and psychological, caused within her an existential crisis. The suffering that she was faced with, began to make her question the very ground of existence.

 As a conclusion, Moorjani conveys through her experience the message of overcoming the struggle of illness. Through her process of healing she attempts to draw the attention of the readers towards the attitude of the ill person which plays an important role in the recovery. She talks about a more philosophical approach towards life. She is also critical of the society that teaches the outward rather than the inward look, it places the focus and importance on the outer reality rather than on the inner self. She says how society does not promote self-love, it instead tags it as selfish. And for Moorjani the NDE helps identify this flaw in the society. She says that there exists a certain cultural expectation within the society, specifically the social and the cultural beliefs and perceptions attached with the illness of cancer adds to the trauma of the ill people. The common belief that cancer is an incurable disease, she says, added to her own fear and negativity about her life after the diagnosis. After her recovery she finds it difficult to fit into the society around her. This world she says seems too superficial for her in comparison to the other realm that she experiences during her NDE. It becomes difficult for her to have the usual conversations with the people around her. For her the society lacks the depth that she finds and experiences post her recovery. She no longer finds the need to live up to the society’s expectation of ‘perfection’. She does not necessarily criticise the medical system or offer an alternate therapy but talks about one’s attitude towards life. She advocates self love and believes that healing in a way has to happen from within.

 The experience of illness cannot be viewed in isolation within the walls of a hospital. It can not be studied as a physical ailment alone. Autopathographies such as Moorjani’s challenge this notion about an illness; they force an in depth reading of the multiple aspects of the patient’s life that impact their trauma and healing. A patient’s identity is not a singular structure; it includes all the pillars that previously held the individual’s sense of self. The new formed identity of being a patient is added to the existing set of identities of the individual. These narratives bring together the many pillars together through the articulation of their illness experience. The accounts about illness separate the knowledge of a disease from the experience of illness, the knowledge of the doctor from the experience of the patient, the factual medical reports from the personal narratives. They contribute to the area of Medical/Health Humanities and facilitate a patient-centric approach towards treatment. They fight the dehumanisation of patients and provide an identity to the ill individual. Through the identity of the patient-authors they gain subjectivity and authorship over their story.

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