Between Two Kingdoms review

Challenging the Comeback Trope: The Illness Narrative as a Narrative of Vulnerability 

As consumers of popular culture, we are obsessed with the comeback trope. From Marvel movies to classic works of literature, we have been fed with stories where the protagonists face immense challenges, are humiliated but determined to improve their conditions, and eventually prove themselves as strong heroes of their own stories. These kinds of stories reflect the American cultural values of optimism and positivity, celebrating the change of fate through hard work and resilience. The trope also applies to illness narratives: people who survived cancer wrote memoirs about their journeys; athletes wrote about overcoming injuries and returning to the sports arena; and the list goes on. However, the nature of the suffering experience – the intolerable pain – presents a conflicting dichotomy with the hopefulness championed in the comeback trope. In Between Two Kingdoms, Suleika uses her narrative to explore the duality of hope and despair during her illness experience and seeks to break out of the traditional trope to show a more nuanced illness narrative that captures both the hope that she sought amidst pain as well as the vulnerability and weakness that were often ignored under the prevalence of the combat trope.

Throughout the novel, the influence of the comeback trope lingers in Suleika’s narrative. As she reflects on her journey fighting cancer, she recognizes that her voice of optimism came from outside expectations. As a patient, she saw in the eyes of others who visited her the general narrative of pain and suffering: the sugar coating of stories of pain. Suleika writes, “When people imagine dying, they seem to gravitate toward certain stories. In eulogies and obituaries, they invoke phrases like passed away, being called home, or gained her angel wings. These euphemisms make death sound so passive and peaceful, like drifting off into a midday nap.” (Jaouad 186) As she observes people coming to visit her with so much pity and condescension and consuming her stories with guilty curiosity, she comes to the understanding that people around her are “gravitating toward certain stories” – stories that they want to hear. Interestingly, the voice of optimism has been a part of Suleika’s voice even before her diagnosis, reflected by her unwillingness to succumb to weakness and its associations. When Suleika traveled to Netherlands but fell ill, she was unwilling to admit the severity of her condition as she writes that “I didn’t want to be one of those blundering tourists who traveled to Amsterdam, did a bunch of shrooms, and ended up in the hospital.” (Jaouad 38) Despite her fever, she was constantly gravitating towards a story of health and avoiding facing her physical discomfort.

As Arthur Kleinman argues on the social theories on global health, illnesses can be understood as social constructions of reality and reflect culturally unique values (Kleinman 2). A part of the social construction is the expectations for strength and perseverance, and vulnerability, a taboo. As a patient herself, Suleika was forced to fit the American social norms of optimism. As she prepared to answer the question on mortality posed by her interviewer, she asked herself: “Would I live or would I die? My survival had inadvertently become narrative suspense.” (Jaouad 136) Realizing that people are consuming her stories as a typical illness narrative, she became “determined to end the interview on a strong note” and “whispered unconvincingly” that she felt hopeful for the future. The hesitation in her voice and her determined response present the clash between optimism and the reality of uncertainty. While one voice in her prompts her to speak the answer of what others wished to hear, conforming to the expected illness narrative, another voice speaks the anxiety and fear that are often unheard. She writes, “As a patient, there was pressure to perform, to be someone who suffers well, to act with heroism, and to put on a stoic façade all the time.” (Jaouad 161) The line perfectly shows Suleika’s awareness of outside expectations imposed on her as a patient – the expectation to “stay strong” and “get well”.

However, Suleika also writes about the impossibility of conforming to the expected narrative. She writes about “growing accustomed to losing my dignity in front of strangers” and expresses her feelings of hopelessness and despair (Jaouad 103). In her memoir, she also speaks the voice of a vulnerable patient, someone who experiences feelings of fear, despair, unlike traditional heroes from comeback stories that embody the spirits of optimism. Suleika writes about her fear being alive, how she could “smell its wet fur in the room and feel the chuffing of its breath.” (Jaouad 121) She writes about being “engulfed by despair” – “the kind of despair that felt like drowning and made voices sound small and distant, as if underwater.” (Jaouad 140) She writes about feelings of anger, hopelessness, disappointment, never disguising these negative emotions and revealing the most authentic illness experience that is not simply characterized by strength and resilience.

In her illness narrative, Suleika explores the dichotomy of the two voices, one that tells her to be strong, and the other that reminds her of the severity of her pain. When she encouraged Will to pursue his career instead of taking care of her all day long, she experiences two conflicting voices, one that understands that “it was unfair of me to resent him for going,” and one that narrates, “but an anger unlike any I’d experienced before was building inside me, contained for now, but threatening to consume everything around me.” (Jaouad 98) Later in the memoir, she explores the clash between the existence of the two voices more explicitly, writing that “A kind of sundering was taking place within me: There was the good-natured patient, young and spunky and cheerful, who raged courageously against her disease, determined to make the best of her terrible circumstances, and this new version, envious, short-fused, sleeping sixteen hours a day and rarely ever leaving her room.” (Jaouad 98) The former version is that version that popular culture champions – the comeback hero celebrated by society, and the latter falls more closely with reality – a vulnerable, suffering self in need of care.

The power of Suleika’s illness narrative underlies in its ability to deconstruct the sugar coated optimism that dominates illness narratives. In “Thinking Through Pain”, Dr. Wailoo urges the community to pay attention to the “micro and macropolitics of pain care” and urge those who “judge people in pain to look critically at themselves – at their own values, agendas, and attitudes.” (Wailoo) In Between Two Kingdoms, Suleika has sought to recreate a narrative of pain beyond blind optimism and encourages her audience to not conform to similar narratives. She directly dismantles the optimistic narrative and writes that although she has always “believed in a world where love could overcome anything,” she has begun to lose faith in her previous conviction (Jaouad 190). Similarly, she “grew allergic to the looks of pity and the positivity pushers” and their “get-well cards and their exhausting refrains of ‘stay strong’ and ‘keep fighting.’” (Jaouad 207) To her, they were just symbols of the narrative that pressured her and lacked meanings. As she directly presents the dichotomy and uses emotional depth and vulnerability to show a version of the illness narrative not captured by slogans of “staying strong” and “keep fighting.” 

Instead, Suleika constructs her own version of an optimistic narrative and does not turn her illness narrative into a patient’s whining. As a part of her 100-day project, she began to reimagine her survival as a creative act and used writing as a tool to regain mental health and positivity. Suleika has shown that optimism and positivity do not have to be universal or conform to the predominant comeback trope but can be different for everyone. Each patient can empower themselves by writing their illness narratives and defying the narratives that society imposes. 

Date: April, 2023

The Narrative of True, Forbidden Emotions: The Emotional Narrative of Pain and Suffering

Beyond a book about cancer diagnosis, treatment, and recovery, Between Two Kingdoms is a human narrative of the suffering experience: the experience of living with illnesses and fighting against illnesses as not simply a physical journey but as an internal, emotional quest. It is a narrative of wrestling with complex emotions that are difficult to articulate and understand, and an honest account of the mental journey under suffering that is characterized by anger, loneliness, shame, guilt, despair, and a lost sense of dignity, as well as a fight to regain physical and mental health. The book is a human account because it does not portray the illness experience as a linear experience from bad to good, but rather offers a nuanced story of subtle feelings and inner voices that lurk inside the patient’s mind. The traces of vulnerability, honesty, and sensitivity all make the illness narrative a powerful emotional journey that reveals the softest inches of the author’s heart. Ultimately, the illness narrative is an internal journey of rediscovering the Self and confronting, embracing, and combating the inner desires and sometimes the darkest demons.

For any patient, pain is more than a physical torture. Between Two Kingdoms challenges the general narrative of pain that focuses on the physical realm and argues that much of pain and suffering happen within the mind. The pain of hurting, as Jaouad puts it – how “everything hurt, even breathing,” is multiplied by the pain of despair and hopelessness – as the pain of “being poked and palpated and locked in a room for days on end without a release date was maddening” (Jaouad 78). The physical pain coupled with the constant dread, loneliness, and confinement can drive the patient crazy. As Wailoo clearly puts in his essay, pain is “political because it is a microcosm of deeper social questions that often swirl around disease recognition and care—questions about compassion for suffering, citizenship, belonging, and social welfare” (Wailoo). The emotional experience is an important part of the social aspect of illness and renders suffering beyond just physical pain.

In the book, Jaouad creates a rich narrative of emotions that often reveal her inner demons and selfish but honest desires that many people are unwilling to admit. In the narrative of anger and rage, Jaouad confronts her feelings of jealousy with courage, delving into her subtle emotions and understanding the gap between how she genuinely feels and how morals and norms expect her to feel, navigating the right things to do under the gap. Jaouad writes, “suffering can make you selfish, turn you cruel. It can make you feel like there is nothing but you and your anger, the crackle of exam table paper beneath bruised limbs, the way your heart pounds into your mouth when the doctor enters the room with the latest biopsy results” (Jaouad 102). Jaouad does not present herself as simply a strong fighter against cancer but admits her selfish thoughts and feelings. She does not attribute her anger and intense negative emotions to the illness but understands that it is a complex product of the drugs as well as her mental health that has been largely affected by the physical pain. The emotions are there, and instead of finding excuses or disguises, she embraces them and tries to dissect them to better understand herself. Her reflection on her relationship with Will – how her selfish desire to hold him close and her need to give him freedom – shows the maturity she puts into constructing the illness narrative. When she writes about her internal experience after Will returned to Hope Lodge after midnight, she instills her conflicted emotions about him in the line: “As he scooped me into his arms and carried me to the shower, I felt two competing emotions duking it out in my heart: I hate you, I need you” (Jaouad 138). The complexity in her construction of her emotions is the power of her illness narrative as she admits both the dark, selfish side of “hating” Will for leaving her alone, having a stable job, and being able to live a normal life and the side of her that loves and understands him unconditionally.

The illness narrative is also filled with loneliness and alienation, and writing has become Jaouad’s channel of expressing these emotions. To the narrator, loneliness transcends the physical absence of others and is more of a desperate mental state of helplessness. Since the official diagnosis, Jaouad expresses feelings of loneliness frequently, from lines like “I had never felt so alone” to “It was the realization that I was in this alone. In a sense, I always had been” (Jaouad 148). Jaouad emphasizes that despite the company of others, including her parents and boyfriend Will, she still feels isolated and alienated from everyone else who represent a life of normalcy. She feels alone because of the extremity and uncertainty of her case. Jaouad writes that “I knew how lucky I was to be surrounded by such love—many patients in the ward had no one to visit them at all—but even with my parents and Will by my side, I felt achingly isolated” (Jaouad 192). Despite the support, she still feels lonely because no one has gone through the same physical and emotional pain to truly understand her state and experience. As she prepares for the bone marrow transplant, she reflects that the biggest challenge is not physical but is “the boredom, despair, and isolation of being sick and confined to a bed for an indeterminate length of time” (Jaouad 117). It is impossible for her not to think about the two kingdoms that she traversed and all the limitations that have been imposed on her ambitious self because of the illness.

Jaouad’s illness narrative is also one that screams the longing for dignity and respect from a patient’s perspective. Since Jaouad’s diagnosis, she has been othered as the sick and weak, becoming especially sensitive to the looks of others, her self-respect largely shaped by others’ gazes. As Arthur Kleiman argues in his social theories of global health, social suffering entails not just the individual but also the family and social network, where a group of people are affected (Kleinman). Jaouad observes that “When you are facing the possibility of imminent death, people treat you differently: Their gaze lingers, recording each mole, tracing the shape of your lips, noting the exact shade of your eyes, as if they are painting a portrait of you to hang in memory’s gallery” (Jaouad 136). The attention makes her uncomfortable and deprives her of self-worth, and the “disaster tourists” who come to visit her only make her more sensitive and anxious. Sensitive observations of others’ treatment of her are essential in her illness narrative and reflects the social construction of suffering – showing that others’ involvement can have negative outcomes, too. As a result of her sensitivity are heightened feelings of guilt and shame. Jaouad describes guilt as her “secret companion” as she feels indebted to her parents, brother, and Will and considers her health as a burden for them as well. Like Kleinman argues, the entire family is involved in social suffering. The guilt that others sacrificed so much to take care of her further developed into shame. Jaouad beautifully summarizes it in the line: “Along with the chemo, an ugliness was coursing through my veins. Small violences. Swallowed resentment. Buried humiliations. Displaced fury” (Jaouad 162). The line reveals her brutal honesty about her emotions and her confrontation with the negative emotions.

From outrage, frustration, disappointment, sadness, helplessness, to humiliation, Jaouad tackles every emotion through her journey with grit and determination and eventually turns her narrative into one of self discovery and growth. From being “too impulsive and reckless with the emotions of others,” not knowing “how to control my moods, which swung and swirled, making me shout from frustration one minute and leaving me euphoric the next,” Jaouad shows herself and her audience that through the narrative, she took perfect control over her thoughts and feelings by making sense of them, embracing them, and trying to explain them from a comprehensive perspective (Jaouad 169). Although she understands that “to be a patient is to relinquish control” of the body, from creating her illness narrative, she gained agency another time by not letting her emotion control her. From the narrative of emotions, she demonstrated full control over her emotions as she learns and reflects on them to reach a better understanding of herself from the experience.

Date: April, 2023