ALT 40

Front matter

African Literature Comes of Age

African Literature Comes of Age

AFRICAN LITERATURE TODAY 40

Contents

Notes on Contributors xi EDITORIAL ARTICLE African Literature Comes of Age 2

ARTICLES

Of Literature & Medicine:

Introduction

The representation of disease or illness in literature can be sobering, distressing, illuminating, pedagogic, relieving, or even controversial depending on what the writer makes of it or what the reader gleans from it. For writers seeking escape from loneliness, social isolation, or depression resulting from some pathology, writing about such an experience may be soothing and relieving. Medical personnel can draw illumination and pedagogic values from reading illness narratives, while a patient that is reading a story may be agitated by the contents of the story to the point of despair. Perhaps the multiplicity of benefits or responses to a single narrative embedded with multiple meanings is what makes fictions of illness or pathography a thing of interest in both literary and non-literary landscapes in recent times. In recent years, HIV/AIDS has been one of the main preoccupations of many fictional and pathographical works. Similarly, the on-going Covid-19 pandemic has received and continues to attract interrogations across the different genres of literature. Yet some critics believe that disease and illness have been under-represented in literature. One of the contemporary critics who subscribes to this line of thought is O'Rourke (2017), who laments about literature having so little to say about illness, and passionately argues for literature’s need to address ‘features of illness that still need explaining, that might help us recognize illness for what it is (a painful monotonous truth), that might materially affect our bloodless debates over healthcare’ (par.14).To emphasize her point, she recalls Virginia Woolfs (1926) surprise about why illness has not taken its place in literature alongside such great themes as love, battle, and jealousy. Indeed, while there is still a lot for literature to mine from conditions of illness, disease, as well as health and medicine in general, it has not done badly either. For instance, in the last two decades or so, the representations of HIV/AIDS in imaginative writings, including Africans, have been remarkable. In addition to joining in such representations, Nigerian literature has equally been exploring other diseases and illnesses. A few examples include Ogochukwu Promise’s Sorrow’ Joy (2015), which explores cancer; Remi Raji’s Wanderer Canto (2021), which is partly about Covid-19; and Ayobami Adebayo’s Stay with Me (2017), which deploys sickle cell anaemia as subject as does this novel under study, Olayinka Egbokhare’s Dazzling Mirage (2017).

Interestingly, the intersection of literature and medicine in general, long taken up by literary scholars in other parts of the world, has recently begun to gain the attention of scholars of African literature. No less than three doctoral studies have been carried out in this area at the Department of English, University of Ibadan.’ Scholarly essays in this evolving area of African literary scholarship are increasing. This chapter seeks to advance and deepen this scholarship. It engages with sickle cell anaemia, a disease that has probably been around since creation but discovered and given scientific formulation only in the early twentieth century. The objective is to examine the representation of the disease, particularly the shades of pain that come with it, in Dazzling Mirage, a recent Nigerian novel. This is with a view to demonstrating that despite the many grave challenges which usually attend the condition, it is still possible for those living with it to have a meaningful life.

The narrative is about Funmiwo, a sickle cell disease (SCD) patient who battles against massive odds in the form of physical, social, emotional, and psychological pain that almost render her lifeless. Born of an unmarried nursing student who dies during childbirth, Funmiwo is abandoned in the hospital for three weeks until Mrs Adebayo, a nurse in the hospital, is saddled with the responsibility of caring for her. She and her husband later adopt baby Funmiwo only to discover that she has sickle cell anaemia. They keep her nevertheless, seeing her as an answer to their own childlessness. As early as the first three weeks of her life, before moving to the custody and care of the Adebayos, Funmiwo starts her battle to survive the deadly disease.

However, instead of surrendering to defeat in instalments by the forces of pain and death, she embraces the warmth of family and friends, as well as other positive forces, to live a fulfilled and meaningful life. It is important to analyse the factors that make life meaningful and positively liveable for the novels protagonist in order to show the potential of literature to enact the possibility of a meaningful and joyful life for SCD patients. The analysis will also help to deepen our understanding of the plight of SCD patients. The chapter starts by seeking to unpick the phenomenon of SCD and its incidence and moves on to a narration of its fundamental symptom (pain), as depicted in the novel, and to the strategies of coping with it.

SCD & ITS INCIDENCE

SCD is a genetic blood disorder that is usually inherited from birth parents. It is characterized by an abnormal tendency for red blood cells to distort and take on the shape of a sickle under certain conditions (Midence and Elander 1994). Though more prevalent among people of African ancestry, it is also found among people of other parts of the world, such as Latin America and parts of Asia. Recent research findings have established its global spread, tracing the same to intercontinental migration (WHO 2006; Ola et al. 2013; Angastiniotis et al. 2013; Piel et al. 2013a). In terms of spread and density, sub- Saharan Africa has the highest incidence of the disease, with Nigeria in the lead due largely to the size of its population. Nigeria has about 200 million people, and has been listed as one of the three countries that account for nearly 90 per cent of the world’s SCD population (Piel et al. 2013b). According to these researchers, Nigeria alone, as of 2010, had at least 91,000 newborns identified with SCD, with the potential to increase to 140,800 by 2050. This high prevalence of the disease, unfortunately, has not been met by corresponding remedial efforts by the state or health authorities in Nigeria.

In his study of SCD in sub-Saharan Africa, Williams (2016) states the obvious when he observes that the disease is a common and growing health problem in the region. He adds that at least 240,000 children born with the condition die every year. Worse still, the disease is ‘widely neglected on the continent, where an estimated 50% to 90% of those born with the condition die undiagnosed before their fifth birthday’ (343). Of the burden of SCD in the subregion, Nigeria accounts for not just the greatest, but for up to 15 per cent of mortality in children on the continent (WHO 2010). Also, the official document of the Nigerian government on SCD, Nigerian Guideline for the Control and Management of Sickle Cell Disease, affirms that the country is ‘the most sickle cell endemic country in Africa with an annual infant death of 100,000 representing 80% of infant mortality in the country’ (Federal Republic of Nigeria 2014,1). The document also estimates about 24 per cent of Nigerian adults as having sickle cell trait. All of these point to how frightening the situation is in the country.

In spite of this scenario, there is little evidence to show that the Nigerian government is committed to reducing the incidence and prevalence of the disease in the country through modern state-of-the-art facilities and therapies. Apart from establishing prenatal SCD screening at some tertiary health institutions, not much has been done to radically improve the situation. Because there are no specialized centres for lifelong medical care for chronic diseases such as SCD, the management of the disease is often left to ill-equipped primary health centres or the efforts of patients’ families. However, public health education, partly sponsored by government and partly by NGOs and medical professionals in private capacities, has greatly improved awareness of the disease, as well as attitudes towards those living with it. Comparing the results of surveys carried out in 1970 and 2001, Ohaeri and Shokunbi (2001) trace this improvement to increased literacy level and greater societal sophistication. Nevertheless, they draw attention to the challenge of attitudinal change in the public by noting that about 5 per cent of parents of SCD patients who participated in their 2001 study had known about the possibility of SCD before marriage, while a third of the participants in the study had not yet determined the genotype of their children.

While there have been sustained, even if inadequate, efforts at engaging with the disease in terms of public health concern, control, treatment, education, and enlightenment from clinical and diverse health perspectives in the subregion, it is very interesting to see that creative writing on the continent is slowly but steadily contributing to engagement with the disease.

A CONSTANT WAR WITH PAIN

Physical pain is a major symptom of SCD, as people with SCD experience a life of morbidity that is continually and mainly characterized by pain. In common biomedical parlance, ‘crisis’ is the word used to define the regular struggle with pain to which the SCD patient is sentenced from as early as age two. The pain is said to be caused by vaso-occlusion or ‘avascular necrosis of active bone marrow’ (Serjeant 1997, 727) which, in non-specialist language, means the narrowing or blockage of the bone marrow in such a way that blood-bearing cells are trapped in the blood vessels, causing a reduction in oxygen supply. While it is relatively common knowledge that the pain SCD patients experience is caused by genetic factors, the novel Dazzling Mirage insightfully provides information about the multiplicity of causes, such as cold, dehydration and stress, all of which are highlighted as trigger factors. These factors are implicated in the novel in the incidents of pain crises experienced by Funmiwo, the protagonist, and Deolu, a young schoolboy.

Funwimos first crisis in the novel is triggered by stress associated with her work; the second by emotional turmoil due to being jilted by Sanya, her first love; and the third by stress associated with pregnancy and childbirth. Perhaps because it has been argued that pain defies expression through language (Woolf 1926; Scarry 1985), the narrator of Funmiwo’ story, consciously or unconsciously in agreement with this position, exploits paralinguistic resources to articulate not just the pain the protagonist goes through, but to also depict the severity of the pain in images that are simultaneously and variedly auditory, kinaesthetic, and tactile. Speaking of the agony experienced by the young woman during one of her pain crises, the narrator observes: ‘She gritted her teeth. Her knuckle cringed. Pain shot through her marrows, rendering her bones sore and soft’ (12). He goes further: “Her features contorted as tortured gasps escaped her lips. She bit her lower lip and gripped the bedside harder’ (12). As she struggles with the pain racking her being and crying uncontrollably, Funmiwo screams ‘Hun-un-un! Yeh-eh-eh! Oh-h-h! Somebody help me! P-l-e-a-s-e h-el-p-m-e-e!’ (12). These are extremely grave, if fictive, renderings of the plight of people living with SCD.

Indeed, while the above rendering may appear a bit too frightening for those who have never seen an SCD patient in pain, it is a realistic one. If Funmiwo takes her experience of a pain crisis triggered by workrelated stress, as above, in her stride, she wishes for death in a more serious episode that occurs while she is pregnant. In this case, the pain experienced is both psychological and physical. Unlike the auditory, tactile, and kinaesthetic imagery deployed to inscribe the physical pain resulting from the work-induced stress, the physical pain experienced by Funmiwo on this occasion is powerfully conveyed through visual imagery incited by the way she pines for death to end the excruciating pain ravaging her body. Because she does not wish to cause unnecessary worry for her family, she struggles so much silently that ‘[s]ometimes she felt as if her whole system was falling apart and that her stomach would rupture as pain laid siege to it’ (132). While Funmiwo’ experience here may not be too surprising because the pain is connected to a state of pregnancy, it is not exactly labour pain. However, the distressing corollary here is the complication wrought by the addition of a bone pain crisis which activates soreness in her bone marrow.

As noted earlier, the pain that attends Funmiwo’s pregnancy-induced crisis is not only physical, she also suffers grave emotional and psychological pain. As she struggles with the physical pain, wishing for death, she also ponderously wonders over the emotional pain her death might cause her loving parents. Yet much as she wishes for death, she finds it emotionally painful to contemplate having a child she would not be available to care for as a mother. These dilemmas and struggle clearly underscore the degree of agony that people living with SCD have to grapple with, but they could also provoke a spirit of compassion and fellow feeling in caregivers and others. Given the anxiety Funmiwo exhibits here, she becomes vulnerable to another round of distress, as much as it also prefigures the possibility of anxiety neurosis. With all of these, the novel underscores the cyclical and endemic nature of the pains that often dog an SCD patient's life.

People living with sickle cell disorder also struggle with emotional or psychological pains that result from a number of other factors, the deadliest of which are stigmatization and social alienation. Funmiwo, the protagonist, and the young schoolboy, are victims of these sad realities in Dazzling Mirage. As noted earlier, one of the major psychological pains suffered by Funmiwo in the novel results from being jilted because of her sickle cell condition. That people with SS genotype, the biological condition responsible for SCD, are often stigmatized in social intercourse in Nigeria has been noted by Ola et al. (2013). In the case of Funmiwo, the attitude is summed up in Mrs Fadipe’s ireful remonstration with her son over his interest in marrying the girl. She chides her son:

Now, listen, my boy, if you choose to be irrational about this, I'll not let you off easily. I don’t want a sickler for a daughter-in-law, understand? If you think TIl spend my old age taking care of a sickly daughter-in-law who may not even be strong enough to give me children, then you must be joking. I want your wife to be an asset, not a liability! (Egbokhare 48)

I have quoted at length the above in order to call attention to the language and, possibly, the mindset of those who, in this case a provisional mother-in-law, oppose marriage to people with sickle cell. Whereas Mrs Fadipe may not be faulted in seeing some illogicality in her son’s obstinate resolve to marry a person living with SCD, her language clearly reveals a mindset that is extremely prejudiced, insensitive, and self-interested. While it is also pertinent to note that her position raises an ethical question about the role of African parents in their children’s choice of marriage partner — albeit a culture that is dying out — the woman’s reaction must be understood as one driven by the instinct of self-preservation. Contrary to the impression that she wants to protect her son, she is actually trying to protect herself against the vulnerability of an old age which a weak and sickly daughter-in-law portends for her. In Africa, there is still a heavy reliance by the geriatric on physical, psychological, and economic supports from their children and grandchildren. To underline the gravity of this ethical conundrum and a possible case of selfish interest, the son, Sanya, also queries: ‘Are you saying because of medical incompatibility, two people in love should not get married?’ (Egbokhare 48). He is mentally agonized. However, his own pain pales into paltriness when compared to Funmiwo’s in terms of its intensity and her capacity to endure the pain. In fact, as soon as the altercation between him and his mother is over, nothing in the rest of the narrative suggests that he feels further pain. That he thereafter breaks his relationship with Funmiwo with indifference further validates this.

Paradoxically, while the other emotional and psychological pains experienced by the protagonist are induced by physical pain, the emotional pain in this instance catalyses the physical one. After receiving the psychological and emotional blow of being jilted, Funmiwo is distressed and depressed. Anger, frustration, and even hatred have promptly supplanted the emotions of love that hitherto resided in her person. The result is organic disequilibrium in her physiology, with physical pain dominating. According to her, she became not only sick in spirit following this, her body was starved and she ‘ached all over’ (108).

To further illustrate the intensity of the psychic pain and disequilibrium this kind of development can cause, the novelist tells an anecdote ofa lovely girl who attempts to commit suicide following a break up with her partner due to genotype incompatibility. After being jilted for the fourth time on the same grounds, the pain incited by the rejection and stigmatization has become unbearable; it is comparable to the kind of psychological pain described as traumatic by Adebiyi- Adelabu and Aguele (2017). Indeed, sickle cell disease has generally been noted to attach a taint to people living with it. Jenerrette and Brewer (2010), Dyson et al. (2010) and Dyson et al. (2011) have all observed that health-related stigma is a challenge for young adults with SCD. They further note that the experience of stigmatization may even hinder care seeking for acute pain by the patient, thereby worsening their condition. Although these studies draw data and insights from

Canadian and American SCD patients’ experiences, the findings are no less true of Nigerian SCD patients’ realities. In fact, in a study of attitudes toward peers with SCD among secondary school students in Nigeria, Ola and colleagues (2013) observe a significant level of negative attitude by students toward SCD.

If stigmatization imperils a happy life for people living with sickle cell anaemia in their quest for marriage, then social isolation or alienation also brings them psychological pain, especially at younger ages when they are more mentally and emotionally vulnerable. For instance, during moments of loneliness after one of her episodes of crisis, Funmiwo recalls how she was always socially isolated as a child. As a child, she was never allowed to play the way other children did, never allowed to attend parties, and never allowed to host any party, even at the landmark ages of eighteen and twenty-one. Obviously, these are borne of the parental sense of responsibility to protect their child from harm, especially the frequent crises; the experience is nevertheless psychologically tortuous for her. Although this parental protection might minimize the incidence of a physical pain crisis in children with sickle cell anaemia, it also inflicts psychological pain on them. Funmiwo laments, ‘no rough play, no bathing in the rain, no ice creams or fan ice. Nothing’ (Egbokhare 21). Indeed, these are some of the things that make life exciting and fun-filled for children. As adults, memories of such experiences are also heartwarming. To deny children such a life is, therefore, akin to robbing them of a real childhood.

Unfortunately, this parental tendency to overprotect is extended to public spaces, where people who lack knowledge of the capacity of sickle cell patients not only deny them agency in matters that directly concern them, they also even feel obliged to treat them with a mixture of pity and sympathy. This tendency innocently but easily undermines their confidence, and makes them feel handicapped and hurt. Adeolu, the young schoolboy living with SCD, and a friend to Funmiwo, provides a perfect example. He is excluded from a school play by his teacher on the grounds that he lives with sickle cell anaemia. Pejoratively, he is told that he is ‘different from normal children’ (72) and that he may fall sick anytime. The boy is stung, and the stinging remarks eventually trigger psychological and emotional imbalance in him, ultimately contributing to the bone-pain crisis he suffers later the same day.

It is also worth noting that the agony that comes with sickle cell condition is not limited to vaso-occlusive crisis in the patient. The primary caregivers partake of the pain psychologically and emotionally. Parents of children with the condition are usually distressed to see their wards in pain. One of the participants in the pain management study carried out by Booker et al. (2006) says this about his plight:

When I am in crisis sometimes, it makes my parents very depressed. And sometimes I try to hide if (sic) from them, because if my father knows I am in crisis he feels he is the one who should be feeling it. (original italics, 46)

A similar thing is observed in the case of Funmiwo’s parents, especially her mother. Even when she does not know that her daughter is undergoing a pain crisis while away from home, she imagines it, becomes agitated, restless, and distressed. During Funmiwo'’s pregnancy-induced crisis, both father and mother also vicariously share her agony. The submission by the participant in the above cited study not only serves to authenticate the vicarious pain suffered by primary caregivers, especially parents, it also underlines the sense of guilt that may be experienced by both parents and their children who live with SCD. Guilt, in mental health studies, has been linked to some internalizing disorders, with depression being number one (Bybee and Quiles 1998). This suggests that caregiving parents and child-patient are at risk of psychological turmoil.

In spite of this, whether by accident or design, Funmiwo’s story inscribes a vision of hope and possibility. Though due to her medical condition she suffers the pain of rejection at the hands of her lover of around six years, she ends up marrying a more deserving man: the chief executive of a high profile company, Adverts Merchant, who is highly understanding, loving, lovable, rich, and responsible. With this plot, the story not only offers a symbolic positive vision to people living with SCD in terms of conjugal possibilities and achievements, the success of the marriage, despite many challenges, also makes concrete the hope of a meaningful and fulfilling life for those with SCD who desire marital union.

MANAGING & COPING WITH SICKLE CELL DISEASE

In consonance with the earlier two-dimensional exploration of the challenge of SCD, this section examines how SCD patients cope with both the physical and emotional or psychological ordeals they live with in Dazzling Mirage. Like most health challenges, SCD is managed with the use of drugs. Although non-curative, many prescription and non-prescription drugs are available to manage the pain that comes with the episodes of crisis which characterize the life of the patient, and to build the blood in their body. However, much as painrelieving drugs are available, they may not be within the reach of the rural or poor victims of the disease in Nigeria. Indeed, the kind of medical attention received by Funmiwo in the novel is hardly the type available to the typical SCD patient in the country. Her parents are medical professionals: the father a physician and the mother, a nurse. Besides their professional expertise, they are also financially well off. This characterization raises some questions. Is Funmiwo'’s successful management of her condition due to the status of her parents? Could the situation have been different if their status had also been otherwise? To be sure, their professional experience and relatively high economic status assist in providing Funmiwo with many of the things that help her to cope with the bone-pain crisis that dogs her life. However, it is the warmth, love, and care from her parents, professional caregivers, friends, and others, that play the most crucial role in the management of the condition: love and care from her parents; care, compassion, and empathy from colleagues at work; and, love, understanding, and encouragement from friends. All these, together with her determination and positive outlook on life, make life meaningful and fulfilling for her.

The novel also hints at the potential of traditional or non-orthodox medicine to mitigate the effect of bone-pain crisis in SCD patients. We learn of a certain sixty-year old grandmother who, in addition to receiving orthodox medical treatment, ‘uses herbs and a particular type of chewing stick known as Orin Ata’ (Egbokhare 138) to manage her SCD condition. The grandmother not only lives a full life, she also ‘enjoys everything life has to offer (138). While this information is provided to encourage Funmiwo to see beyond the pain and other discomforts associated with her condition, and to embrace life with optimism, the fact is that many poor or rural people living with SCD in Nigeria either rely wholly on herbs or use them as complements to orthodox medicine. This patronage of herbs may well inform the bold but spurious claim by some herbalists or traditional medicine personnel that they can cure SCD, as also seen at the Sicklers’ conference in the novel.

However, while drugs may relieve the patient of the physical pain, the psychological and emotional pains can only be soothed by love, care, counselling and the like. As observed during banter between Funmiwo and another character in the novel, ‘tender loving care’ is emphasized as one of the things a sickler needs in order to wade through bone-pain crisis whenever it occurs. This phrase, used jokingly by Lanre, one of Funmiwo’ colleagues at work, articulates the best non-drug means which the protagonist takes advantage of to overcome the episodes of crisis she experiences. From her parents, her physician, fiancé, friends, and family members, no energy is spared to show love to Funmiwo during crises, and even when she does not have crisis. Living her conviction that what a person with SCD needs are love and adequate medical attention, her mother not only provides the ‘software’ of love to Funmiwo while under her wing, she tries to continue along this track even after the girl has grown up enough to work and live independently of her parents.

This is further evident when her mother insists that though she could not make the physical pain of Funmiwo go away, holding her daughters hand, stroking her aching brow and sharing words of comfort with her always help. Indeed, as a sickly abandoned three-week-old baby, what brought Funmiwo back to full life was the love and care of Mrs Adebayo, not drugs,. As further evidence of the potency of love and care in mitigating the effects of pain in SCD patients, we witness an instance where Funmiwo shows little concern for the pain ravaging her body simply because Sanya, her lover, is around to support and dote on her. She also composes a poem where she passionately notes that the love she gets from those around is the strength that keeps her going.

In addition to love and care, encouragement and counselling also play some role in attenuating the challenges that come with SCD. The most significant in this connection, as far as Dazzling Mirage is concerned, are words of cheer, inspiration, and reassurance from husband, a caregiver, to wife, the patient. This is particularly so during the crisis triggered by pregnancy and childbirth complications in the latter. Dotun repeatedly assures his wife of his love and the love of the people around. He assures her that no harm is coming her way, and that she should be optimistic and never be scared. He makes no pretense of being a sharer of the agony his wife is going through. All of these inevitably buoy up Funmiwo’s spirit and enable her to cope with her medical challenge.

Beyond the familial and spousal words of encouragement, the novel also makes use of stories of people who are living positively with SCD to encourage Funmiwo and, by implication, others on the imperative of optimism to not only survive the sickle cell condition, but to also enjoy their lives. Besides the nameless grandmother referred to earlier, Chief Sodiwin, an elderly man living with SCD, is held up as a model of not just positive living, but also of active life in spite of his health status. Both are profiled as agile elders who can easily pass for ‘the so-called “normal people” (120). In fact, the reference to their elderly status significantly undercuts the assumption that a person with SCD is fated to die young, an assumption so widespread that it has almost become a truism about the condition. It is even particularly disturbing because it is responsible for engendering unnecessary anxiety in both patients and caregivers. Such ordinary anxiety, as we are informed by Secer et al. (2019) can lead to adverse health challenges such as anxiety disorder and depression. Although the mortality rate of SCD patients is generally below that of those who do not suffer from SCD, the fact is that there are other diseased, social, economic, and cultural conditions that also increase the mortality rate of people in any given society.

In the novel, prayer is also, but uncertainly, offered as a means of coping with the challenge of SCD; uncertainly because the victims of the disease themselves are not seen to cultivate prayer as a means of mitigating their pains. Nevertheless, we see instances of others praying for them with a view to achieving the same. The nameless grandmother prays for Funmiwo while hospitalized at Dr Ayodele’s clinic. The physician himself encourages Funmiwo’s husband to pray during the treatment of his wife’s pregnancy-induced crisis. He admits that he is also ‘consultating with God in prayers, asking Him what to do every step of the way’ (131). While it may be difficult to establish the efficacy of prayer scientifically, as Funmiwo’s husband also seems to acknowledge, its placebo or soothing psychological effect cannot be dismissed. Adebiyi-Adelabu (2021) has, for instance, noted the balmy effect of prayers on a mind that is psychologically troubled. Similarly, other studies (Ohaeri et al. 1995; Uwakwe et al., 2001; Anie et al., 2010) have shown that religion and spirituality are part of the psychosocial strategies used by Nigerian SCD patients and their familial caregivers to manage the illness.