Book Review: Blood Matters

36899154Review by Sarah E. Parker (Associate Professor, Jacksonville University).

This collection of essays, Blood Matters: Studies in European Literature and Thought, 1400-1700 (University of Pennsylvania Press, 2018),  explores the material understanding and figurative use of blood in the late medieval and early modern world. Bringing together the work of scholars in history and literature, this interdisciplinary collection introduces a conversation about the important and multiple roles that blood played in the early modern worldview. That said, the book’s editors, Bonnie Lander Johnson and Eleanor Decamp, are both scholars who focus on early modern theater, and that area of specialization informs much of the collection. The chapters explore in particular the liminal quality of blood; because blood typically hides within the workings of the body, the moments when it appears are laden with meaning.

The chapters are relatively short and grouped thematically. The first group of chapters deals with the blood’s literal and metaphorical circulation. The opening essay, by Margaret Healy, addresses the work of William Harvey, who discovered the circulation of the blood. Healy takes issue with Christopher Hill and John Rogers’ argument that Harvey’s late work on circulation signals a revolutionary and “vitalist” turn in his philosophy and politics. Instead, she argues, Harvey’s vitalism remains consistently Aristotelian throughout his lifetime. The next chapter, by Heather Webb, predates the discovery of circulation as we think of it, but she argues that medieval authors Dante Alighieri and Catherine of Siena nevertheless view blood as a dynamic entity in a constant state of circulation that connects the individual physical body to the body of the church more broadly. One of Catherine’s letters uses her own blood as a metaphor for the warmth and life that she believes her spiritual vigor could bring to a sickly church. Katharine A. Craik’s essay on Shakespeare’s Henriad is one of many essays that deal with Shakespeare and early modern drama in this collection. By examining the character Pistol, Craik draws attention to the class tensions in Henry’s famous lines in the St. Crispin’s Day speech that “he today that sheds his blood with me / Shall be my brother; be he ne’er so vile, / This day shall gentle his condition” (4.3.60-63). While Henry’s speech suggests that war can overcome class divides, Craik shows that Pistol and other characters belie that claim.

The second section groups essays that discuss wounds and wounding. Continuing the volume’s focus on Shakespeare, Hester Lees-Jeffries’ chapter considers the representation of wounds on the Shakespearean stage. Coriolanus is described as “mantled” in his wounds, a metaphor that Lees-Jeffries explores in terms of the material world of the theater where a blood soaked garment would have played the role of both costume and prop to communicate the various wounds in Shakespeare (Macbeth, Julius Caesar, etc.). Gabriella Zuccolin and Helen King shift the focus to the history of medicine and consider the ways that nosebleeds were specifically gendered in the early modern period. In contrast with Laqueur’s theory of the one-sex body, they focus on cases where women were believed to get nosebleeds because of the suppression of their menses, and explore this topic in relation to contemporary beliefs about the humoral system and the benefits of regular bleeding. Joe Moshenska’s final chapter for this section investigates the boundary between animal and vegetable by considering an odd trope in the epic tradition: the hero’s encounter with a bleeding tree. Medieval and Renaissance authors, including Dante, Ariosto, and Spenser, take up the story of a man trapped in a tree from Virgil’s Aeneid, and Moshenska connects the moment of violence in these stories (when the hero breaks the tree’s branch and prompts it to speak) to the violence of poetry more broadly.

The third group of chapters deals with the theme of corruption in the blood. Tara Nummedal offers a fascinating analysis of the relationship between blood and alchemy’s concern with the role that menstrual blood played in generation and corruption. This chapter considers the work of Anna Zieglerin, a German alchemist who claimed that her own body had been purified by alchemy, causing her not to menstruate. Ben Parsons discuses another corrupted demographic, adolescent boys. According to medieval pedagogical treatises, he argues, boys had an excess of blood, a fact that made them both receptive to learning, but also unruly and in need of discipline. In one of the best contributions to this volume, Bonnie Lander Johnson focuses on a specific kind of corruption in Shakespeare’s Romeo and Juliet, namely greensickness, which was believed to affect young people as they reached sexual maturity. She argues that the Nurse’s parallel references to Juliet’s weaning and her maturation “functions as a greensickness narrative” in the play (144).

The fourth section of the book takes up the important role that blood played as a source of proof in legal contexts. Lesel Dawson discusses the bizarre medieval and early modern belief known as “cruentation,” according to which the body of a murder victim would bleed when its murderer approached. Dawson discusses myriad references to this belief in early modern drama. Eleanor Decamp’s important research into the distinctions between barbers, surgeons, and barber-surgeons in the early modern period informs her chapter on the appearance of a basin in the final bloody scene of Titus Andronicus. By showing the association between blood basins and barbery, Decamp unpacks the puns on, references to, and associations with barbery in the climax to Shakespeare’s most gruesome play. Elizabeth Dutton also wonders about blood on the medieval and early modern stage, considering in particular the material fact that it would have been difficult for the actors to get blood off of their hands. Her reflections on this problem cover the anti-Semitic miracle play known as the Croxton Play of the Sacrament, which features a dramatic bleeding host scene, alongside scenes from Macbeth. Patricia Parker’s essay comes back to the importance of blood as proof in an overview of the meanings of the bloody cloth in Cymbeline, which she connects to Sujata Iyengar’s scholarship on the influence of the Passion in Shakespeare’s plays.

The book’s final section, called “Signs and Substance,” is the most loosely connected group of chapters. Frances E. Dolan writes about the association between blood and wine in early modern arguments that England should embrace a domestic viniculture to avoid taking in foreign “blood.” Dolly Jørgensen’s chapter looks at changes in the medieval calendars, specifically the December representation of pig slaughter, which became more graphic in the late medieval period. Helen Barr’s final chapter offers a surprising reading of The Canterbury Interlude (a contemporary response to Chaucer’s Canterbury Tales) where she imagines a Pardoner who is beaten by a phallic pilgrim’s staff as a precursor to the appalling scapegoating that accompanied the AIDS epidemic.

Since many of these chapters focus on drama, the collection will be most useful to Shakespeare enthusiasts and students of early modern drama. The fact that the chapters are fairly short (between 10-15 pages) also makes them good candidates for anyone teaching early modern literature or history with an eye to the history of medicine and the important role of blood as metaphor and substance in the early modern world.

The book is part of a larger “Blood Project,” based at Oxford University. Though it is a bit dated, the website for the project has useful resources for anyone interested in learning more about the role of blood in the history of late medieval and early modern medicine. Readers of this journal might be especially interested in the recorded performance of the Croxton Play of the Sacrament, which is available on that website.

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A Kairotic Moment for Women’s Pain and Illness: A Review of Three Books

Review essay by Caitlin Ray

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery (HarperOne, 2018)

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch (Beacon, 2018)

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman (Nation Books, 2018).

I was diagnosed with a rare muscle disease, dermatomyositis, in 2010. I was 23. I am 31 now. In the intervening years, I have been told my disease is nothing but a nuisance (from an eye doctor who—perhaps—should focus on my eyes), that my pain is psychological and is best treated with antidepressants, that I am too young to be chronically ill, and, in part because of my age and gender, too emotional to talk about the my diagnosis and treatments.

I say this not only because it positions myself, and how I read the three texts I am reviewing, but because disclosing illness is also what each author does at the outset of their own work. Here, I am reviewing Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery (HarperOne, 2018), Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch (Beacon, 2018), and Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman (Nation Books, 2018). All three of these books, published between February and March of 2018, examine the legacy of women’s illness and pain, and historicize current healthcare issues, all while weaving in the authors’ own experiences of illness and the first-hand accounts of other sick women. In reviewing these texts in conversation — even disagreement — with one another, I hope to offer a fuller picture of what it means to be a woman in the current healthcare system.

Knowledge, Trust, and Doing Harm

30653955Doing Harm by Maya Dusenbery, a journalist and editor of the website feministing.com, examines the ways that medicine has historically disenfranchised women and still discounts our experiences of illness and pain. Of the three texts, Doing Harm is by far the most traditionally non-fiction. While Dusenbery does disclose that she has been diagnosed with Rheumatoid Arthritis, this book keeps her experience in the background, which separates it from the other two texts that focus more intently on the author’s own experiences with illness and pain. While less deeply intimate than the other two books, Doing Harm is an effective introductory text to the ways that the medical system is biased against women.

Dusenbery offers a thorough picture of medicine’s historical (and current) resistance to women’s pain, illness, and experience. One way Dusenbery does this is by framing the problem through the “knowledge gap” and the “trust gap” (11). The knowledge gap, she writes, are the ways that we simply don’t know about women’s medical concerns. Women have historically been excluded from clinical trials and medical research due to hormonal fluctuations and potential pregnancy. As a result, much of what we know about medication dosages, chronic diseases, and symptoms of medical emergencies are based on studies done by men and simply applied to women in an “add women and stir” approach (33). While medical research is attempting to correct decades of a lack of research on women through legislation, like the 1993 NIH Revitalization Act, there is still a lack of progress and research on women’s health.  

Complicating the knowledge gap is the “trust gap” between women and medical professionals. The trust gap is doctor’s not believing in women that they are either telling the truth about their symptoms, or that their symptoms are physical in nature (as opposed to psychological). The trust gap is also the legacy of hysteria, and the double-bind that women find themselves in: that they are either too emotional to be trusted to report on their pain and illness, or (if women try to resist this stereotype) that they are not emotional enough to be as sick as they report. The trust gap manifests in several ways: diagnosing women as having psychosomatic or conversion disorders, prescribing anti-depressants or sedatives for pain management, or simply doubting a women’s account of illness until objective physical evidence appears (if it does).

Doing Harm speaks to the historical and current landscape of medicine  and the systemic ways that women are kept sick and in pain. It provides a thorough overview of the issue, but in its desire to cover a lot of territory, it is simply not as in-depth on specific issues. For instance, Part 2, “Invisible Women in a ‘Male Model’ System” discusses the under-researched issue of women and heart disease, bias against women in emergency rooms, the lack of research for autoimmune diseases, and the ways that women are often pushed into psychiatry and thus experience a delay in diagnoses, in the space of 34 pages. Invisible and Ask Me About My Uterus are much more thorough, but less of an introductory text than Doing Harm.

“Deathyness” and Invisible

33931697Invisible by Michele Lent Hirsch also discusses women who experience illness and pain, and touches on many of the same subjects as Doing Harm. Michelle Hirsch, a journalist specializing in science, gender, and health, brings her own experiences into this text much more than Dusenbery does in hers. Hirsch also focuses more on the implications of chronic illness and pain in young women. The result is a thoughtful and deeply grounded text that uses the author’s own experience as a springboard to discuss phenomena that she noticed herself about being a young woman with chronic illness. The very things that make the text effective for me (also a young woman with illness) may be less effective for other readers—those who aren’t in this demographic, or those wanting a more rigorously researched text that doesn’t depend so heavily on anecdotes may prefer a text like Doing Harm.

Hirsch divides the book into sections on dating and sex, beginning a career, having kids, maintaining friendships, and generally the experience of being in a (young woman’s) body that is ill.  Hirsch captures much of the stigma and difficulty of being a sick young woman through both her own experiences having cancer and a rare disease and through interviews of other young women with chronic illness. This closeness with her subject allows Hirsch to dig in deeply with her topics, and often will frame a chapter with her own experiences and then talk to other women to get a more complete picture.

One key theme throughout the book is captured in Hirsch’s use of the term deathyness: “the state of having a palpable connection to [death]—the reminder that you can be young and yet seem, to some people, decrepit.” She further describes this phenomenon as when she “walked around feeble, hollow version of myself… I suddenly felt twice as old” (34). “Deathyness” pervades much of the challenges Hirsch writes about. For example, when she experiences discrimination in the workplace (where she was told to check her cancer “at the door”), she uses that as a jumping off point to discuss ways that women face discrimination in their careers and how wanting to fit in with other young professionals but physically (or mentally) being unable to causes frustration. Hirsch also brings her insights into a discussion of friendship and pressure for young women to fit in despite illness and pain. She highlights here much of the particular challenges facing young women who are “off-time,” that is, the stress and isolation that occurs when someone experiences culturally expected events, like sex, childbirth, marriage, careers in a different time in the life cycle than peers (93).

While Doing Harm talks about the systemic issues of women and illness, and Ask Me About My Uterus is more of a memoir with research woven throughout, Invisible blends research and experiences so that each section is both connected to the author’s own experience of being a young woman with illness and to interviews the author has done to gather data on the issues Hirsch is exploring. As a result, the book offers excellent insight but resists a self-help tone that other books that explore young women navigating life with illness might utilize.  

Home, Hope, and Uteruses

35605474Ask Me About My Uterus by Abby Norman is less about the systemic problems surrounding women and health and is instead a memoir about the author’s experiences with endometriosis and a neurological condition. Norman, a science writer and patient advocate who started a blogging space called Ask Me About My Uterus [link: https://medium.com/ask-me-about-my-uterus] on Medium, is writing about not only illness, but about childhood trauma, abuse, and her desire to find a place she can call home. For those wanting a deeply felt, experiential text about women’s illness and pain, particularly about endometriosis, this is an ideal text. For those that want a broader view, or a more deeply researched text, Doing Harm or Invisible might better fit the bill.

Norman goes between past and present, considering how her tumultuous childhood masked and made more difficult the health traumas she went through in her late teens and early twenties. Her story begins during a semester at Sarah Lawrence, when she experienced “a stabbing pain in my middle, as though I were on the receiving end of an unseen assailant’s invisible knife” (2). This set off a chain of events that would introduce Norman to the frustrating world of ERs, the pain scale, doctors who don’t know what to do, doctors that are sure that her pain is psychological, and doctors that completely discount her experiences. In trying to understand her pain, and the pain of others in similar situations, Norman sets out to research all she can about her illness, the health system she is ensnared in, and the historical and cultural meaning of pain like hers.

Where Doing Harm provides a Boeing Jet’s view of the terrain of women’s health, and Invisible is perhaps a helicopter landing and taking off in that same wilderness, Ask Me About My Uterus is what it’s like to hold a microscope on the landscape of illness and pain in women. Norman wrestles with the same phenomenon as the knowledge and trust gap, the isolation of “deathyness” and being off-time from peers, but it does so in a much more personal and intimate way. However, its close focus on Norman and her experiences sometimes seems to elide her childhood traumas with her illness experience, and thus doesn’t do as effective of a job as Doing Harm or Invisible of digging into the complex history of women’s trauma and physical illness and how they are often mistaken for each other.

Building a Community of Women’s Voices

These three accessible texts should be of interest to those looking to understand women and illness, pain, and disability. I hope that researchers and scholars in pain, medicine, and disability will pick them up, and consider teaching out of them. However, these books are perhaps best suited to other women who experience pain and illness, as each book focuses on the ways that women coming together, talking with one another, sharing experiences has been one of the most effective ways of advocating for patient-centered research and creating community for those with illness.

It is worth noting that there are obvious limits to these texts: While each addresses the complications of race, transgender identity, and class, these books are still written by cisgender white women. While Doing Harm and Invisible do make sure to have space for interviews and research from the perspective of trans women and men and women of color (and Hirsch identifies as a queer woman), they still are written from a position of privilege. Ask Me About My Uterus, being a memoir, focuses more on Norman’s own experiences, although absolutely addresses class and difficulty she had in affording care and maintaining health insurance. Despite this shortcoming in these texts, there is much value particularly in the importance of sharing stories to build up community.

Each text concludes with the realization that the best strategy to begin healing the ways that women have been ignored, excluded, and made sicker by the medical system is to speak out and find others who share similar experiences. In my own quest to understand my illness, pain, and the ways that women are disbelieved and discounted in medical spaces, I hope to take this lesson from these books and continue to connect the voices in my own community to the broader coalition of women with chronic illness.

Book Review: How to Survive a Plague

34472704Review by Katelyn Smith 

David France’s How to Survive a Plague: The Story of How Activists and Scientists Tamed AIDS (2016) documents in detail the grassroots movement of patient advocates fighting for their lives against AIDS in 1980s and 1990s America. The same title as his 2012 documentary, France uses his insider access as a New York City activist from the time to explore and reveal the impacts of individuals and groups that formed to combat the crisis, such as the AIDS Coalition to Unleash Power (ACT UP).

The book follows the chronology of the disease’s progression through America’s population, touching on the worldwide impacts as well. From his time in New York City, the initial epicenter of the disease, France details the political impact of what was initially dubbed a “gay cancer” following the 1970s, a time which France writes “produced the fiercest round of anti-gay legislation the nation had ever known” (14). The book’s four parts cover the naiveté surrounding the initial impact, as many believed AIDS to be an isolated disease; increasing fear and government resistance to support research during the disease’s spread; hurdles and minor victories achieved by activists by the late 1980s; and the eventual divisions among activists amidst increasing deaths. While the book ends soon after the success of antiretroviral drugs against the disease in the mid 1990s, allowing many people infected with HIV to live normal lives, France avoids an overly positive ending, instead claiming there were “heavy burdens of survival” (514). Indeed, the book’s realistic ending mirrors the prologue, which follows a 2013 memorial service for Spencer Cox, credited with initiating drug trials which led to FDA approved treatments for AIDS.

France intersperses positive scientific developments and political influence with personal stories of friends and fellow activists succumbing to the physical and psychological effects of the disease. While generally sobering, France does briefly mention that daily life continued for most of the 1980s, and it was not until the later part of the decade and the increase of the seemingly unstoppable flow of deaths that many activists began to reach their breaking point.

France stresses the impact of AIDS activism in America’s history of medicine, documenting the success and influence of these patient advocates, self-proclaimed experts, on governmental bodies such as the FDA. Formed by attendees of ACT UP, the Treatment + Data Committee informed themselves of all available medical literature on AIDS and through the efforts of members like Iris Long, a trained chemist, eventually helped impact the direction and regulation of scientific research.

Though activist protests were characterized by “carnival-like theatrics and symbolism,” members of ACT UP were eventually called upon to present testimony at international scientific conferences on AIDS and consulted by government officials such as Anthony Fauci, appointed director of the National Institute of Allergy and Infectious Diseases in 1984, on how to pursue AIDS research (413). By the end of the 1980s, scientists, government officials, and even drug companies seemed to recognize that they were on the ‘same team’ as AIDS activists. France reflects, “global pharmaceutical companies succumbed to their demands, at first out of fear of guerrilla protests and later out of respect for their minds” (6). Partly because activists were willing to compromise some of their original zest for speedy delivery of “drugs into bodies,” the initial chant of ACT UP, the group successfully worked within established hierarchies to impact AIDS treatment. 

Part of the book’s success stems from France’s careful balance of personal anecdotes, prose descriptions of archived film records, and records of the many protests, kiss ins, and meetings held by activists. Further, attempting to remain impartial, France expertly presents the many characters of the story: scientists, activists, and public figures, as both heroic and flawed. Larry Kramer, perhaps the most recognized AIDS activist and founding member of ACT UP, is described as both a galvanizing leading figure of the movement but also as a radical sometimes at odds with advancement attempts within medical communities.

France’s book is set apart from other AIDS histories, including Steven Epstein’s Impure Science: AIDS, Activism, and the Politics of Knowledge (1998) because of his personal, passionate engagement with the AIDS activism story, drawing in the reader to the tragic loss of many lives and setting the sober tone which characterized the interactions between politics and science at the time. While not a light read, the book is a definitive and engaging narrative of AIDS activism, an appreciated and in-depth account that moves beyond the scope of France’s award-winning documentary.