Recently, I was diagnosed with a life-threatening rare disease. My efforts to obtain treatment and medical care, though not as difficult as my now daily struggle to survive, reflect the inherent challenges of navigating the U.S. healthcare system and more pointedly so as a woman of color who happens to be an African American. If my life did not depend on obtaining effective treatment, all of these experiences together might have merely proven to be an inconvenience, something I might have complained about as much as I would have complained about the ill-mannered driver who cut me off while driving the other day. And, if it were just a matter of turning to any one of the powerful online search engines that exist to find effective treatment, my ongoing experience would merely resemble an ambitious trek down a mildly interesting path. This was not the case.

Early on, I decided to document and interrogate my observations and experiences about this process in a somewhat happenstance fashion. That is to say that the idea for an ethnography recounting those experiences came later. Prior to this crisis, I could not have imagined knowing about the steps involved in being diagnosed with a life-threatening illness, followed by the desperate searching for treatment and care, and ultimately obtaining life-prolonging treatment.

From the beginning, I kept a small journal in which I recorded this process, highlighting the various situations in which I found myself. I did so because of the challenge I faced in remembering what any one of the doctors and specialists to whom I turned told me. It was all very overwhelming, and the only way I could process the information (sometimes contradictory) that I received was to dutifully record it for later and sometimes multiple reviews. My first entry and each one thereafter included not only what I was told but also my observations about the exchange and my reactions to the doctor. This journal and the notes recorded serve as a basis for this text.

There is a long-standing historical tradition within the realm of qualitative research for this approach to gathering information.

Throughout everything that I have described so far, my end goal has been kidney transplantation. Without it, my survival depends on dialysis. And, while peritoneal dialysis provides a certain degree of control and convenience well beyond the burden of thrice weekly hemodialysis, it is by no means easy. It is only a substitute for a well-functioning kidney, and while it enables me to approach a sense of normalcy, I remain some distance from it. My ability to travel, to go swimming, or to even take a bath (I can only shower) is either impossible or extremely challenging now. And, of course, there are the many dietary restrictions by which I must abide.

The amyloidosis and multiple myeloma will continue to exist as simmering threats that will in the best-case scenario remain at undetectable levels. Whether this will require regular “maintenance” (i.e., infusion) remains to be seen, but the doctors treating this are confident about the current pharmaceutical cocktail’s efficacy. They support and have encouraged me to pursue kidney transplantation.

In the United States, kidney transplantation was the first of the organ transplant procedures to be developed because of the availability of live donors and the critical technique of dialysis. In 1990, the American researcher and surgeon Joseph Murray received the Nobel Prize in Medicine for his pioneering work in kidney transplantation and the development of many new immunosuppressive agents, including drugs and monoclonal antibodies.

Since that time, transplantation has become the treatment of choice for those with end-stage renal disease (ESRD), and at the same time, an understanding of the molecular and cellular events associated with the transplant has expanded considerably.

Today, kidney transplantation is a therapy for ESRD with benefits that go well beyond dialysis treatment. Kidney transplant not only provides a longer and better quality of life for ESRD patients, but it is also less expensive in the long run. The current estimate for the complete cost of a kidney transplant is approximately $450,000. This includes physician fees, drugs, as well as hospital admission, procurement, and post-transplant costs, and while this fee of nearly half a million dollars seems expensive when one considers the accumulated costs for dialysis, it is clearly the less expensive option.

Christos Tsiolkas's gothic narrative tale, Dead Europe, uses confronting realism as well as a dark phantasy, and it incorporates many voices, imitating the carnivalesque poetics of Ancient Greek and Roman plays, while also drawing from Greek myth and folk culture. The varied ideologies represented in this text, however, are not in synchrony with these communal forms but instead reflect the psychic and social consequences when individuals are cut off from their societies and fellow human beings. So, in many ways, this tale can be read as a polemical, multi-voiced comment on human suffering, expressing the rancour and outrage found in the works of classical world writers such as Fyodor Dostoevsky, Victor Hugo, Vladimir Nabokov, Pablo Neruda and Gabriel Garcia Marquez, who had been influenced by various humanist philosophies.

Tsiolkas contributes to modern and contemporary literary voices on the world stage who speak against injustice and suffering, but he does so through anti-art, using a poetics that seems to scream against inequality. Together with his heightened tone, he uses the modern construct of the mediated lens of his protagonist, Isaac, a bicultural, Greek Australian artist journeying throughout Europe and recording what he sees on his camera. Instead of following the well-trodden path of landmark tourist sites, however, Isaac spe-cifically searches for and shows Europe's dark spaces, which are historically associated with the gruesome deaths of crimes against humanity.

Christos Tsiolkas shows the ugly face of human trafficking, exploitation, anti-Semitism and misogyny and focuses on the scars imprinted on human bodies and souls because of hate crimes inflicted upon powerless members of society. For this reason, he can be read not only as a multicultural writer but also as a writer of world literature who speaks for what Appadurai refers to as ‘cosmopolitanism from below’, indicating he is part of a cosmopolitan movement of transnational, underclass migrant communities in the arts, who seems to speak from both the North and the South:

Translation is, quite obviously, in between. It is in between languages, cultures, people and time periods, among other things. A number of different theoretical concepts and discussions regarding translation explore this in-betweenness, from a variety of angles, that is fidelity, equivalence, domestication/foreignization (in other words, distance) and visibility. Fidelity and equivalence are considered so essential to the work of translators that they are even codified in a number of translators’ association's guidelines and codes of conduct, although some scholars suggest that they do not belong there or perhaps should be considered ethical matters (Bennett 2021, p. 46). Some of the relevant questions are as follows: How ‘faithful’ must a translator be and to whom or what? How equivalent must the source and target texts be and what does equivalence even mean in this context? Should a translator bring the text to the reader or encourage the reader to approach the text? How visible should the translator be and who is responsible for the visibility? All of these issues are on a continuum, although some translators and scholars insist that one binary position is more correct than another.

In this section, I explore the betwixt nature of translation. I also adapt an idea from the world of sexology to suggest that being a little less ‘vanilla’ in our approach may be a way forward and could help us get out of the position where we are ‘stuck between a rock and a hard place’, and instead into one in which we may be comfortable between the two, with a hand resting on either side. That is, I believe that allowing ourselves to slide along the continuum works better than trying to rigidly choose one side, even if having a more black-and-white/right-and-wrong approach might seem easier and more appealing, because it implies that all a translator needs to do is to figure out the correct option.

3.1 Fidelity

One of the most common concepts in translation theory is fidelity or faithfulness. The Oxford English Dictionary offers an initial definition: ‘Of a person or animal (esp. a dog): constant in allegiance or affection; loyal, true to (one's friend, master, etc.).’

Introduction

‘Connectivity’ is one of many buzzwords in contemporary queer migration studies. Queer migrants are often portrayed as having a special affection for digital connectivity, which they use to stay close to their loved ones and the queer community, as well as using the safe and egalitarian online space to speak back to the mainstream society that marginalizes them. But what does ‘connectivity’ mean or refer to? In this chapter, its meaning is threefold. Firstly, it refers to a material condition brought about by the rise of digital media. In the context where information and communication technologies (ICTs) have become a crucial tool in contemporary society, existing studies argue that digital media is now an intrinsic part of today's social infrastructure (Retis and Tsagarousianou 2019). ‘Connectivity’ therefore refers to the status of ‘being connected’ through the digital infrastructure, that we now live in a ‘transnational habitus’ (Nedelcu 2012), and that our daily experiences are constantly digitized (Everett 2009), connected (Diminescu 2008) and mediatised (Hepp et al. 2012).

Secondly, ‘connectivity’ also means the creation and maintenance of various emotional, cultural and sociopolitical ties through digital media. Ever since the emergence of the internet in the 1990s, scholars have been exploring how the digital means of communication enables people to feel connected with their loved ones, their ethnic and racial roots, as well as their social and cultural heritages, despite being physically distanced from their homelands.

Next, following the argument in this edited book, connectivity may have a third meaning. As has been argued elsewhere (see Issen 2022), ‘connectivity’ also involves the fusion between the online and offline realms. It refers to the reality that the connection between the digital and the physical is ‘not disengaged and separated but intertwined in daily practice and event’ (Ponzanesi and Leurs 2014, 11), that individuals’ daily experiences are now situated in the ‘online–offline intersectional co-constituency’ (Candidatu et al. 2019, 40).

In the summer of 1841, the poet John Clare made a four-day journey on foot from Epping Forest, Essex, to his home in Northborough, Northamptonshire, and wrote of his experiences in a short account now known as the ‘Journey out of Essex’. Unlike the pedestrian journeys of some other Romantic-period writers, Clare's ‘geographical mobility was not’, as Robin Jarvis explains, ‘the ready expression of […] personal freedom’. It was, instead, an urgent, ‘reconnitered’ [sic] escape from High Beech asylum where Clare had been a voluntary patient since 1837. Tom Paulin describes the way the ‘Journey’ has ‘entered literary folklore’ and Jonathan Bate labels it ‘one of the most remarkable autobiographical fragments in the English Language’. Certain elements of the narrative have been told and retold, and it has prompted a number of second journey or footsteps narratives in recent decades. This chapter argues that Clare's ‘Journey out of Essex’ is also important as a complex example of microtravel because it exposes the limitations of a clichéd association of slowness with leisure travel and the ‘making of conscious choices’, or with ease, intimacy and insight. There is a lot of pain, and a lot of harm, described in John Clare's journey account. The un-Romantic slow journey of John Clare deromanticizes pedestrian microtravel.

Clare's ‘Journey out of Essex’ was begun on the road, worked on further the night he arrived home in what must have been a state of exhaustion, and redrafted and finished in the days that followed. It was never published in Clare's lifetime and amounts in total to under 3,500 words. It illustrates the complexities of ‘microtravel’ as a concept, because it holds in tension textual features that seem paradigmatic of what we might call slow or decelerated travel, and elements that complicate what those terms mean because, in Clare's case, slowness is caused by illness of mind and body. James Whitehead confronts what he describes as the ‘difficult topic of the place of the asylum in Clare studies’ and draws attention to the dilemmas posed for readers of Clare's works produced in his ‘asylum’ years, which constitute a significant portion of his life: ‘to what extent do we need reading practices or expectations that allow or compensate for Clare's mental health and situation in the asylum, and how should we develop these?’.

Legendary Chicago newspaper columnist Finley Peter Dunne once quipped that a newspaper “comforts th’ afflicted, afflicts th’ comfortable” (2002). Dunne was referring ironically to newspapers in a physical, tangible world in the late 19th century. Yet, even in a 21st century virtual world such as the Metaverse, the sentiment Dunne expressed still pertains. One difference is that the public to be comforted, or afflicted as the case may be, is virtual. They may have real-world counterparts, but for Metaverse journalism, the focus is on the virtual. This means the users who enter, populate, and shape the Metaverse use its applications, share virtual experiences, and collaborate in digital activity, including remote work, learning, and more, including building spaces within it, even possibly news entities operated by user-reporters.

This chapter examines the nature of the virtual public that exists or may develop in the Metaverse. Moreover, the chapter articulates how journalism will relate to that virtual public. There are some parallels to the real world. Users may be consumers of Metaverse journalism. They may be sources of stories and they, or their data patterns, may be the subject matter of those stories; they may even act as citizen-user journalists. This chapter considers user rights, from privacy to safety, as well as how those rights intersect with the actions and policies of those in power within the Metaverse, and how they may shape or define Metaverse journalistic practice.

Users are essential to the development of the Metaverse. Early indicators are that Metaverse users likely will follow an adoption and diffusion model of innovations and possibly a technology acceptance model (Davis, Bagozzi & Warshaw, 1989). Some early adopters will come quickly, but then usage may climb more gradually as the Metaverse matures or takes a more defined shape. If users respond favorably to their experiences inside the Metaverse, acceptance is apt to climb and more users may join. Assuming users do enter the Metaverse, it also will be important to its development that users continue to use it. If usage is merely an experiment and not frequently repeated (i.e., there is a low rate of acceptance), the Metaverse likely will become little more than a niche media environment.

The preceding chapter referred to the Institute of Medicine's (IOM) 2002 groundbreaking report that documented poorer well-being and health outcomes for African Americans and other ethnic and racial minorities relative to Whites.

The IOM report noted that African Americans are sicker and have shorter life spans, and this is not simply a result of income or access to insurance. Instead, what the report made painfully clear was that “racial and ethnic minorities receive lower-quality health care than white people—even when insurance status, income, age, and severity of conditions are comparable.” According to the IOM report, Black people within the United States were less likely than White people to be given appropriate cardiac care, to receive kidney dialysis or transplants, and to receive the best treatments for stroke, cancer, or AIDS. According to the report, “Some people in the United States were more likely to die from cancer, heart disease, and diabetes simply because of their race or ethnicity, not just because they lack access to health care.”

Within the United States, structural inequities that exist result from the various systems of oppression that have ensured the continued maintenance of the status quo. The status quo in the United States is one that has historically privileged Whites relative to all others, men relative to women, the rich relative to the poor and working class, and the able-bodied relative to the disabled. Although the definition of who is considered White has varied over the centuries of America's existence, far less mutable has been the belief in White superiority and the right to White privilege. Current discourse about White privilege has focused on inequity in healthcare, racism and justice, education, employment, intimate partner violence, and wealth.

Most people today who are inclined to think about these issues accept this as a reality. In many ways, it has come to be viewed as a part of the “tax” of being a person of color and, in particular, a Black person in the United States. Much like the “tax” that is a part of law enforcement traffic stops for Black drivers, the healthcare and well-being tax is another given.

Multiple myeloma (MM) is an incurable blood cancer that occurs when malignant plasma cells grow uncontrollably in bone marrow. It is not curable, but doctors have made remarkable strides in treating it. As much as I wish that this never happened to me, I feel very fortunate that it did in a time when these pharmaceutical advances were possible. Whereas MM was a death sentence as recently as 10 years ago, it can be treated with a far greater life expectancy than was previously possible. AL amyloidosis is a rare disease that occurs when an abnormal protein, called amyloid, builds up in your organs and interferes with their normal function. MM and AL amyloidosis are similar diseases resulting from clonal proliferation and dysfunction of plasma cells and have likely outcomes in the kidneys because of protein deposits.

The advances in the treatment of MM have been valuable for patients who suffer from AL amyloidosis.

In an earlier section of this book, I described the challenges of illness associated with a rare disease. Because fewer people are afflicted by rare diseases, they garner less research and investment from the pharmaceutical industry, which is driven by potential profits. Developing safe, disease-curing and life-saving medicines requires considerable time and money. According to the Tufts Center for the Study of Drug Development, the cost of developing medicine from invention to pharmacy shelves is $2.7 billion over an estimated 10 years.

The primary expense of developing any drug into something that consumers can safely use is the cost of conducting the research, including clinical trials, that will show it is safe and effective and ultimately able to secure regulatory approval. These expenses can range from $10 million to $2 billion, depending on what the drug is for. Importantly, it is not just the outright costs of the research that burden drug developers, but it is the loss sustained because a majority of drugs developed never make it to the market. According to one science writer, at least 90 percent of medicines that start being tested on people don't reach the market because they are unsafe or ineffective. The $2.7 billion figure includes the cost not only of these failures but also of not putting the money spent on them into something that would give a more reliable return.

In 20 years of marriage, I only remember 4–5 arguments among us. One of the last was her treatment strategy, but it was her body and I eventually understood her rationale later (wanting to get back to normal). Kellina was an elegant, stunningly beautiful, brilliant woman who was extremely humble, yet very intense. She wanted the most out of each minute life had to offer. She was Lois, I was the Clark Kent persona; she was an awesome wife and mother, whom I deeply miss.

To understand how Kellina helped others is simply to contact the National Science Foundation or Google, “NSF mourns Kellina.” She had a profound impact on so many people. She encouraged me to publish, to pass on my cybersecurity knowledge to others in order to help develop others and to make strives for cybersecurity best practices. My first publication was “Security Architecture and Models” chapter within Krause, M., & Tipton, H., 2003, Information Security Management Handbook, 5th Ed. This was a collaboration with Kellina. She was a social psychologist, and I asked her to write a section on social engineering for cybersecurity practitioners, not her fellow academics or students. I read her social engineering piece and handed it back to her. Kellina thought something was wrong by the expression on my face I suppose. I stated it was an outstanding technical writing on the subject and I had nothing further to add. At the time, Kevin Mitnick was the sought-after thought leader on social engineering. Kellina addressed the subject from the academic side yet in layman terms for cybersecurity practitioners.

I wrote several other publications afterward with her encouragement (all edited by her). She would invite me to National Science Foundation's (NSF) computer science open discussions or public presentations. She told me, for example, research states not to allow a toddler to watch TV before the age of two. That aggression of computer games on developing adolescence minds is harmful. She made me a better father. I can honestly state, Kellina is probably a cofounder on the science, technology, engineering and mathematics (STEM) to what it is today and within the federal government. Her other signature task was broadening the participation of minorities in STEM.

Introduction

This chapter aims to explore female Taiwanese international students’ experiences of living and studying in Western countries (Australia, Canada, France, Germany, Switzerland, the United Kingdom and the United States). It focuses on how, in the digital age, these women define, negotiate and transform themselves and their identities in different ways in the offline daily reality of life abroad and in the online reality of long-distance communication with their parents. Transnational mobility exposes people to new social contexts in which they get to know, appropriate and navigate through new gendered norms and practices while simultaneously reframing and being influenced by the ones they learned in the society of departure, in this case Taiwan. While women's international migration for the purpose of studying abroad has been increasing in recent decades, little is known about their overseas experience or the link between gender, womanhood, parental expectation and international migration. Hence, the purpose of this chapter is to explore the subjective experience and the readjustment process of these Taiwanese international students. Given the inevitable geographic distance between the women and their parents, this chapter locates and examines their communication in the virtual space. Therefore, it pays close attention to the role of digital platforms in the communication between female international students and their parents and, most importantly, how the use of digital social media platforms creates various kinds of digital intimacy and a tension between the online and offline worlds.

I argue that female international students try to negotiate two heterogeneous offline realms of practice, namely the different norms of Taiwan and their host countries. As this chapter will show, the negotiation between these two different offline cultural worlds has a significant impact on their online digital performance. Using qualitative research methods through in-depth interviews for data collection, I document and analyse how women deal with two different offline cultural worlds, how the tension between these two different offline realities affects women's online communication with their parents, and how the women create a singular synthesis of these competing discourses from Taiwan and Western countries.

As a result of the cumulative effects of the illness and noticeable weight loss, my appearance changed in yet another way. Whereas my complexion had previously been “light,” it was now somewhere closer to a medium, darker brown color. I was frustrated when I first noticed this because no one, not even Dr. S., the African American physician who currently treats me, could tell me that this was a direct result of amyloidosis or multiple myeloma, or that it was a direct result of kidney failure, or that it was some kind of outcome resulting from the cumulative effects of these maladies. Even now, some 20 months into the diagnosis, I continue to struggle with a true understanding of the effects on my complexion. I regularly grapple with any number of unanswerable questions. For example, will my skin tone continue to get darker with additional treatment? Alternatively, will sufficient treatment reverse these effects? Will my skin tone return to the shade it once was?

For me, as an African American woman in a racialized society like the United States, the matter of skin color (i.e., complexion) is very real. While I was aware of my shifting skin tone and noticed it most times when I looked in the mirror, I did not become sensitive to the change until greeting my mother at the airport after not having seen her for close to a year. She actually gasped and stopped in her tracks as she approached me, immediately questioning whether something was wrong. My mother, who has always had a medium brown skin tone, immediately sensed something was off given the change in my skin tone.

This was nearly a year before I would be diagnosed with amyloidosis/multiple myeloma. Unbeknownst to me, the disease was progressing largely undetectably. Whereas others who saw me daily did not notice the change in my skin tone, my mother, who lives outside of the United States and who had not seen me in months, noticed the change right away. I was not terribly alarmed, but I did become concerned.