Those Numbered Days: An Autoethnography on Living and Dying with a Cancer Patient

Introduction

Sk. Jabbar Ali died on 10 March 2006. It took me 12 long years to begin writing on the relationship between me and him. I met Jabbar at Barasat Cancer Research welfare centre as a 28-year-old terminally ill cancer patient, carpenter by profession and football player by heart. He shared his life stories with me during my work on terminally ill cancer patients at a suburban hospital in India. Jabbar was of considerable importance during my fieldwork in the hospitals of West Bengal, one of the 28 provinces in India. I was studying the changing identities of the ‘Self’, ‘Other’ and the world as a consequence of terminal illness (see Nath, Chakrabarti, & Das, 2011, 2015; Nath, Chakrabarti, & Sengupta, 2009). I used to talk to people and develop emotional attachment with many, and my work has resulted in inductive ‘discovery’ of dimensions human experience in the face of death (Richardson 2000). In this article, I reflect on broadly three issues of doing research on cancer patients: (a) Emotional nature of the relationship among the self and the other in ethnographic research as a life transforming event, (b) Evocative narratives of gruesome experience of dying in cancer and (c) Importance of context in shaping experience and building up of relationships. My experience follows in the form of a story in an autobiographical mood without interruptions for analysis. It is supplemented by a direct quotation with a ‘thick description’ (Geertz, 1973) of the context.

Autoethnography: Because I am the Field Notes

In social science, a method is often seen as the mechanism of ‘reaction formation’ inside the ‘self’ (Bochner, 2002; Denzin & Lincoln, 2000; Ellis, Adams, & Bochner, 2011). This is an important reason for which ethnographers often use first person narratives (Ellis & Bochner, 2000).

I felt that personal narratives ‘become the autobiographical narratives by which we “tell about” our lives’ (Bruner 2004, p. 694) as we ultimately reap our own biography (Nietzsche, 1994, p. 238). Through autoethnography, I can connect my personal experiences to the broad spectrum of life through concrete action, emotion and self-consciousness (Ellis, 2004; Spry, 2016). I associate myself in writing autoethnography with an intention of presenting what Ellis and Bochner (2000) calls ‘evocative narratives’ (Caulley, 2008)). It is a shift from traditional, scientific approach (Anderson, 2006) to a free-form style (Ellis, 2000; Ellis & Bochner, 2000) to reflect on the ‘emotional nature’ and self-transforming spirit of qualitative studies (Gilbert, 2001). These first person narratives are capable of evoking strong emotions in the reader through highly personal accounts of experience (Neville-Jan, 2003; Zhexembayeva, 2003). In my story, I intend to evoke this emotion by encouraging readers’ empathetic participation in my lived experience through co-constructed reality for a short term yet long lasting and ‘self’-transforming event (Saks, 1996).

This article is both an autobiography and ethnography. The autobiographic reflection is to focus on the left outs, things which has remained outside of my format of doing research. It is at the same time ethnographic, since the self has significantly discovered the other during the process of anthropological ‘methodological’ sharing. I wish to evoke undiscovered emotions which came out as I explored myself in retrospect. The depiction of narratives or stories (following Polkinghorne 1988, narrative and story are treated as equivalent concepts) shows the active selection of more reflective (with my bias!) part of my time with Jabbar. These are special moments; special because these moments moved me the most

The Context: Where Experience Embeds

I still remember the day when my father first recited the famous quote ‘to be or not to be’ from the Hamlet (Shakespeare, 2005). I was in seventh standard, hardly understood the meaning then, neither do I understand now. My confusion continues, especially after I have watched my father die of the same terminal disease, cancer in January 2018. Why do people choose to live despite having ‘arms against a sea of troubles’ (Shakespeare, 2005, p. 45)? Is it the uncertainty ‘The undiscovered country from whose bourn/No traveller returns’ (emphasis added; Shakespeare, 2005, p. 46) compels us to live? What if one feels the existence as the worst and death as relief from the ‘sea of troubles’? (Shakespeare, 2005, p. 45). I kept asking these questions when I was preparing myself to explore life of terminally ill cancer patients.

Jabbar: Beyond My Comfort Zone

I found Jabbar, a 28-year-old man who looked older than his years, with unkempt hair, sitting restlessly on the hospital bench meant for outdoor patients on 5 January 2006. He died on 10 March 2006, leaving a letter for me, and for this short period I was close enough to feel the loss forever. I have never been sure how to label this relationship with him. I always called him by his first name, and he reciprocated. Only once did he tell me his full name. If I refer to Jabbar as a ‘friend’ or technically ‘informant’, both labels would say either too much or too little and also leave out something important.

Everything that could be wrong was wrong with Jabbar. He had high fever, an unusual cough, spit with blood clots in it and an unusual lumpy underarm. To be honest, his blood filled spits created an image of fear. He was one of three brothers, was married and had a beautiful daughter of two years. He was a football player at the district level, a professional carpenter who for the previous three months had gradually become excluded from his regular life. This gradual exclusion from what he considered normal led him to believe that he was not going to recover.

His contention was without medical proof at that time, and I used this point by repeatedly telling him that he was going to recover. With my convincing assurances, we shared some joyous moments sitting on that bench. I talked about my friends at the University, our aims of becoming eminent anthropologists, and so on. However, I also told him that I had a specific purpose in talking to him. He somehow realized that our mode of conversations was never something ‘professional’: ‘But you are not asking me questions, how could you gather what you need?’ he asked me.

‘No, I am not going to do so. I like talking to you… but tell me what happened to make it necessary for you to come here for a test,’ I enquired, so that he could tell his story.

He reported his three-month-long venture with numerous doctors to finally arrive here.

I was introduced with Jabbar’s bhabhi (elder brother’s wife). Her face was reddish and was bearing the bad news. Jabbar’s biopsy report indicated cancer. I was silently looking at her. She broke down. Jabbar looked at me straight and shouted at me:

You were making false statements… can you tell me why? I never touched bidi ¹ or cigarette, what will happen to my daughter, how I would manage the money?

Those were his last words before he fainted. We admitted him to the hospital. I asked for bhabhi’s permission to visit Jabbar often. Bhabhi wanted me to come if I was able to manage time and I decided to do so. That was my work; I needed to finish my dissertation!

On my way home, I felt disgrace for my mistake. I was casually giving him fictional but positive assurance. The reality was something else, printed in black on white page that smashed my fiction. I was disappointed with my casual mind-set while dealing with serious issues in life. I felt that I was to be close with Jabbar to overcome my feeling of guilt. In that night I found myself doing something I stopped doing for some years. I started writing diary.

Next day morning, I went to the hospital. I found bhabhi standing with medical reports. Jabbar was living with small cell lung cancer at the stage IVB with virtually no point of return. He was suggested to go for chemotherapy and a medicine Geftinat. I purchased Geftinat and went upstairs.

Jabbar appeared in shaved cheek, fresh and handsome with a beautiful smile on his face. He was repetitively saying sorry as he shouted unreasonably yesterday.

I kept his feeling of guilt intact for a moment: ‘Yes, I never faced such an embarrassing situation’ —I looked at Jabbar; his face was all pale with shame. I continued, ‘Yesterday I was thinking about you. Do I have a bond with you? (Brief pause) And suddenly I realised I was spending hours, thinking of you, something which I never did before. Subsequently I asked myself with a pun why am I thinking of you?’ I paused. Jabbar was smiling. I started again, ‘…and this morning I have found the answer!’ I stopped. Jabbar was eagerly looking at me. I knew it was going to happen. Jabbar couldn’t hold himself and asked me, ‘What was that?’

I asked him, ‘What was what?’

Jabbar: ‘The answer?’

I took my time and told him, ‘Oh ho, the answer! It is simple, I realised that you are my friend.’

I still remember his expressive face. His eyes became brilliant and gave a tender look that made me feel that he could read me from within. For him, friendship is a tough task to apprehend and for me: ‘Wait wait! Let me think, don’t you want me as your friend?’ Jabbar started laughing and I exhaled, telling, ‘I am relieved, I don’t like unequal relationships!’ We both continued laughing….

That day Jabbar’s acceptance was an achievement for me as I wrote in my diary. ‘At least now I can enter the hospital. It is a relief for me. The stupid hospital authority would have never given me the permission to do my work.’

I always knew that gaining trust and making friends were the most vital parts for the initiation of the project. I was told by my academia that it was important to establish relationships (‘rapport’) to carry on what I was doing. After that, by maintaining an analytical distance I would be able to return to my ‘home’. However, that never happened to me.

With two chemo shots in a small interval, I found Jabbar weakening and increasingly becoming closer to me. We started sharing our personal feeling more, than facts of the outside world. Once we were discussing about friendship. My concern was with problems and beauty of friendship and the network we had in the University. He asked me: ‘Suman is not it wonderful that you are always surrounded by friends and not strangers? I also had my friends from locality and football team. Now I am alone here. I am living in the middle of the strangers!’ I felt Jabbar is unhappy with the lonely hospital life.

‘Yes Jabbar, but it is hard to find a real friend within the world of strangers. Who knows you might find your best friend in this hospital! Don’t take this phase of life as total loss.’ I assured with a smile

Jabbar continued: ‘What do you feel about the real friend? Who is a real friend?’

‘For me’, I continued with a pause taking a quick preparation for the answer, ‘I feel that there are many people I feel being close. The interesting thing is I have my place in a very few hearts, fewer than we think. It is a reality we all need to accept!’ I quickly replied to make conversation continue. Jabbar remained speechless. He was blankly looking at the roof. He was lost in a deep thought about something I didn’t know. I continued energetically ‘You know, we do a lot of things at the University, like making ourselves frenzy, chitchatting, quarrelling, fighting, singing, eating together, roaming, flirting, making love, playing…’ I paused ‘well we also study when we find nothing more to do!’ I stopped as he was not listening. I felt, as if I was talking to a speechless object with all my energy. Jabbar’s usual smile was missing. I stopped talking but continued to look at his face. Slowly he started in a low voice.

‘My friends used to come daily when I was first admitted, but within a couple of weeks most of them stopped coming. When I started having blooded spit they started avoiding. May be they are afraid of me.’ (Pause) ‘Man fears death and I am dying….’ I was attentively listening to Jabbar’s words and was feeling his pain of living with isolation. He was already labelled: a man who has blood-filled spit!

‘My dear, I have hard that your friends are busily arranging funds to continue your treatment. You have a beautiful family to care for you. Your wife and others are waiting for the moment when you will be cured’ — I replied to make him understand that his friends were with him. Jabbar was silent and in-different. I continued by rejuvenating my energy: ‘After this tough time gets over you will be continuing what you like. You will continue creating wooden items, play football or whatever you wish to do. I will gaze at you from a distance or may be I will play with you. (Pause with a smile) Until that day you need to follow doctors’ instructions.’ I concluded with a smile. He reciprocated with a smile for a moment. His smile was conveying something unusual. There was no sign of relief on his face that I used to find while talking to him. He was preoccupied with something I didn’t know.

Spending few minutes with his silence and my uncertainty about his concern, I asked Jabbar, ‘What is it?’ He took few moments with silence before he smiled: ‘What is “what”? Nothing actually!’ As he concluded with a smile, I realised his unwillingness to share his thought. I stopped.

After some time—‘Yesterday I watched a film called “Final Destination”,’ I started again.

‘English movie?’ his voice filled with interest. I found that the spark of energy is back

‘Yes’

‘I always wished to see one but I never had an opportunity.’ With my relief, his smile was back.

‘I am sure you will, some day.’ My energy was back.

‘Tell me the plot! Would you, please?’

I took my time, ‘It was about death, in most unusual way, and it says that there is no escape from death. One cannot cheat death.’

Jabbar stopped smiling and looked at me, ‘Death is always unpredictable, and we are only deferring our death… this is what we call life…!’

Before he could conclude, I started loudly, ‘That is something I want you to accept and internalise. You know, after I am over with you, I have to go back. I may die on my way, may be, who knows, perhaps by an accident!’

For the first time Jabbar held my hand tight. I felt the temperature and the anatomy behind the fatless flesh of his fingers. ‘You are not going to die! Not before me.’ He shook my hand gently and held it for some moments. He continued when I was wondering at him. ‘Yes Suman you are right. The only difference is that I know the time is near. You wouldn’t understand. You all are happy working normal people.’ Jabbar gave me a ‘you won’t understand’ smile.

I was becoming deeply associated with Jabbar largely in an unaware process. I knew my proximity would be painful. Watching Jabbar dying might haunt me forever. Yet it was impossible to make myself uninvolved; to undone what has already been done. As we continued sharing our personal spaces, I encountered problems of adjustment in my personal life. I was transforming rapidly. I was preoccupied with Jabbar’s thought. My close friends were thinking me as become introverted and more self-centred. Most of them asked me about the reasons since usually I am very loquacious and enthusiastic. My best friend thought I might have engaged in a secret love affair. The affair was taking her share of my time. In those days I became silent than I was ever before. I constructed a shell thinking that these experiences were hard to share with others. Even when I tried, I found it hard to articulate words that could make others understand my inner feelings. In turn, I found that they either didn’t have the time, or were not interested to listen to my depressive experiences. As days were passing by, my feeling of anxiety gifted me sleepless nights. I used to lie awake, watching the dark ceiling of my bedroom. I knew this was going to end with his life (or might continue in other shape). According to doctors, Jabbar’s life was standing at the margin. We all prayed for something miraculous.

‘Your wife is beautiful, soft-spoken and has a lot of inner appreciation for you,’ I told Jabbar in the next morning. I was wondering why he never spoke about his wife who was taking care of a lot of things.

Jabbar smiled at me, ‘I know’. He gave me a brief concluding remark.

‘Your wife loves you a lot. Her love will help you to continue breathing. With her love, you don’t need others to care for you!’ I smiled, ‘Not even me!’

Jabbar took a few moments; his face reflected he didn’t like the issue, ‘May be you are right, but I don’t think so.’

I remained silent as if I wanted to know more about it.

With a brief pause, Jabbar continued, ‘She is so monotonous, she appears with the same boring queries how am I feeling? Did I take medicines in time? And the same nagging words what will happen if I die?’ Jabber took a pause, and as he spoke loud, he needed some time to breathe. ‘I don’t like these at all. What am I suppose to do? I need a break, I want to die alone.’

We both kept silent for some moments. Jabbar closed his eyes. After a few minutes he looked at me straight, ‘Suman, have you ever been in love?’

I was confused. The answer was never straight for me, ‘I fell in love several times and none of those took any final shape. People call them infatuation but I know those were love. My feelings were true for those moments. Yes, falling in love is one of the best feelings!’ I smiled and talked casually, but Jabbar was serious.

He continued, ‘I was in love only once and she is not my wife. She is Pamela.’ Jabbar gave me a ‘should I continue?’ gaze.

‘Tell me about it then. I would love to know that. It happens. Love is always divine. Did she leave you?’ I gave him a welcome smile so that he could initiate.

Jabbar exhaled; his way of talking reflected sorrow.

‘And?’ I paused, ‘Why didn’t you marry her?’ I asked excitedly.

‘The rest is a very common story. I had no job when her father wished to let her daughter marry. Of course, I was not a desired groom. She asked me to marry her immediately. I was not in a position to think of marriage. I prayed to the Allah to make some miracle. I wished death of her would-be husband. Perhaps Allah had different intention. He didn’t wish to make Pamela sad. As I am dying early, she would have broken down watching me dying. I am thankful that no miracle took place,’ Jabbar started breathing heavily.

I was silently looking at him: an apparently happy family man, with a daughter, and a beautiful looking wife but he was still crying for the past relation.

Jabbar continued, ‘I am happy that Pamela will not have to suffer my loss.’ His voice was choked, eyes wet. He wiped his eyes with fists and bit his lips. I gave him some water.

Jabbar smiled, but his eyes were red. I recalled people say eyes speak your mind. Jabbar continued ‘…and this is not the end Suman! Now I miss her more than I do my wife.’ He stopped for a moment. His eyes quickly scanned my face. I was deeply sunken in Jabbar. I placed myself in his position and did not notice him looking at me. He told me with urgency, ‘I am sorry; I mean this is wrong; please don’t misunderstand me. After marriage I should be loyal to my wife. (brief pause) I am loyal. With this bodily weakness it is Pamela whom I miss more. Suman, am I wrong?’

I nodded with a smile,‘I can understand whatever you have said and unsaid. This is life. I am glad that despite your mental coercion you are speaking the truth. It is always right when people speak the truth, no matter how strange it may seem.’

Before I could conclude, Jabbar started, ‘I don’t have much time. I will die soon. Everybody knows; don’t tell me that you don’t. Could you please do me a favour?’ Jabbar stopped as if asking permission to speak about the favour.

I assured him that I will do anything for him.

Being assured he asked, ‘Please bring her back before I die, I want to see her at least once… before I die.’ Jabbar’s big and wet eyes portrayed the helplessness. He continued, ‘This is something I can’t ask anybody.’

I was shocked. On the one hand I made a promise to a man who was rapidly dying; on the other hand, I had something that we call society. Jabbar’s life demand was something beyond the structured sense of the world. I knew even if I try, people would misunderstand Jabbar and me. I was uncertain and replied, ‘I will try.’

Next few days I was disturbed. Jabbar’s eyes kept asking me ‘please bring her back before I die’. I found his bony face, half-bald head in my class notes and computer screen. I tried to become busy in telephone conversations with my friends, discussing about the latest movies and attractive first year girls, but I failed. I was losing concentration in my studies. Though I had a bunch of unread class notes, pages of materials on computer screen, burning cigarettes, steamy coffee on my study table, but my mind stayed beside Jabbar’s bed. I was searching for an opportunity to visit him soon.

Five days later, I went for another meeting. In between, I had hours over the phone with Jabbar. He was anxious to meet. He told me about the short span and fragility of our life. He was mentally giving up. This time I had a gift for Jabbar: a bunch of Raktakarabi flower. When I gave the bunch to him, he was spellbound. He managed to say ‘after a long interval!’ He was smiling, smelling and kissing the bunch like a child. His expression made me happy. I never knew that a simple gift can make a man as happy as Jabbar was. I arranged the bunch in the empty flower vase and like every day I sat beside him and clasped his hand. He closed his eyes.

A few minutes later, I found Jabbar’s wife with her daughter standing beside me.

‘Jabbar’ I asked in a low but long expression. ‘Look your Nasima and her mother is here’.

Jabbar tried to bend himself with the little energy he had left in the body. I helped him to hold himself half straight with pillow. With a smile and bright eyes, Jabbar wanted to hug his daughter but Nasima refused to recognise her father.

‘He is not my abbu ³ ’—Nasima uttered strongly and sharply. We failed to make her recognize Jabbar as her father.

I had a brief phone conversation on that night. Jabbar was deteriorating rapidly. Doctors were to deliver the last chemo of the first series on the very next day. Jabbar was crying over telephone for Nasima:

I am so hopeless. I can not even ruffle her hair, pinch her downy neck, and clasp her smooth body. But I rejoice watching my daughter and my wife live, move and laugh… I feel you and I met just yesterday! We met about a couple of months now. Perhaps this is the longest one month than I ever had… After I die, tell others about the friendship that we have. Tell them that you had a Muslim friend… a football player in mind, a Carpenter for food, obligated and dutiful man who loved to live.

I never knew that it would be our last conversation. Jabbar died on 10 March 2006. The day when he was striving to write something for me with hand shaken, mind frozen and chest blasted, I was busy with my career, attending my daily classes at the university. After an exhaustive day when I returned home, the phone rang and I got the news. I realised about an hour later that I was on the top of a newly constructed bridge near our house. I still cannot remember how I reached there. I returned home, locked myself in my room and was lying still on the floor. Words cannot explain the grief that engulfed me. For the next few days, I used to be seated anywhere. Look at something. With each cramp down my heart, I felt being hollow. I didn’t cry, I silently offered my last goodbye. I am fortunate enough to find a friend: a hospital staff who gave Jabbar’s last letter to me. A letter filled with his secrets, which are best kept secret. I still have contact with his family. I am watching his little Nasima growing. She is growing without father. Life goes on.

Conclusions: Healing Discourse

In several academic and non-academic discourses I mentioned Jabbar several times. Jabbar has become a part of my life. I left the place which I call field. Jabbar left me with memories and hallucinations. Jabbar’s death and later his memories helped me realising my transformations, both as an academic self and as a social subject. I had a purposive acquaintance then and I saw myself transgressing the purposive boundary to become emotionally involved. It is still continuing with this writing. I came to recognise how I held emotionally close relation with people I met in my fieldwork and some became more meaningful. It is this relationship that often occupy the central stage of doing ethnographic research and are often least explored and written about. One could easily see the dimensions of fear, pain, isolation and loneliness, nostalgia, and helplessness rapidly developing in Jabbar in his last few days. These dimensions of life with terminal illness seek an avenue to vent out. While Jabbar was living with these dimensions of his life, our discourses both verbal and non-verbal have created a different realm of existence. We could transcend the apparent context of moaning sound, dimmed light, phenyl and medicine smells of the hospital background and dwell at a different realm of love and friendship and celebrate life. I have never been sure about my role in Jabbar’s life, but the hospital context shaped our purpose and interactive components. Following Kleinman (2007, 2010), my role in Jabbar’s life began with caregiving medicine to something even deeper.

While anthropology talks about key informants to use them as an information hub, my experiences at the hospital, especially with Jabbar, made me feel the importance of the nature of the relation that I have with my ‘informant’ in doing ethnography. We tend to develop emotional attachments especially while dealing with relatively more sensitive issues such as terminal illness. It is more pertinent to explore the emotional nature and basis of relationships that we have with people we call informants. As we need to build a relationship, we also need to take responsibilities and finally treat them as special human beings beyond every boundary, who were nice enough to let us in! Now about 12 years later I look at myself in retrospect: I am living with a letter, memories, and guilt of not taking quick initiative to fulfil my friend’s wishes. I started with rapport building in a technical sense but ended up doing something else. It is victory of the relationship, something beyond the purposive boundary of ‘rapport establishment’. I feel many social scientists have similar experiences, but it is important to focus on our field relationships, and unmask our precious experiences, which is not part of ethnography but ethnography in itself. Moreover, these rich experiences are mutually influencing and contributing, otherwise a post graduate student of anthropology would have never become so important to receive a person’s last letter from the deathbed.

Relationship is always context dependent. I am reasonably sure, if it was not a context of hospitalization due to terminal illness, Jabbar and I would have constructed a different relationship, with different issues to discuss. Our constructs are fragmented and momentary. To understand the tacit and expressive process of rapport making, the fragmentary and momentary constructs need to be [re]cognised. The construction-alteration-construction in the dialectical process of building relationship while doing research needed to be well stated. It is essential because of two reasons: first, it helps contextualize and uncover the process of data collection and, second, it is itself a research that the fieldworker continuously does through communication and relational construction and adjustments. After the death of Jabbar, I came back to the place I belong. It was a silent comeback. My best friend stopped questioning me. I was back. However, moments we shared together have transformed me. I regularly spend time thinking about Jabbar. I have become more tolerant. I am less talkative and a patient listener now. I have seen desires and compromises with desires that people make even in the terminal situation. Jabbar made me realise the tacit dimension of life; the need of a listener and a non-judgemental friend. As I transgressed the purposeful boundary, I also transcended my internalized ‘self’ and ‘programmed’ ethnic construction and boundary. Even after 12 years, I feel myself in a challenge with the contradictory and painful nature of participatory research. While I could uncover several dimensions of life in the face of death, I have also experienced contradictions between stranger and friend, involvement and detachment. As I made a stranger friend, I found myself on a one-way street. The street leads to increasing involvement, even if only with memories. No U-turn. No comeback. Detachment and a return from the field might be theoretically possible, but it is an impossibility for me.