Head Above Water: Reflections on Illness
(The Feminist Press, 2023)
In her new book Head Above Water: Reflections on Illness, Dr. Shahd Alshammari provides a memoir of her journey through academia while battling MS. Diagnosed at eighteen, her doctor told her she would be dead by thirty, if not sooner. The assumption was that she would not go to university, she would become completely dependent on her parents, she would not have an independent life. To read Alshammari’s work is to be harshly reminded of the capitalist and Darwinian nature of academia and really, of many cultures including both English/Western culture and the Arabic/Bedouin culture Alshammari describes. People are only useful if they can compete, produce, and for women, reproduce successfully. To be female is, often, to live in a state of shame where others—usually heteronormative cis-gender men—create systems that both reject and control our bodies on every level. This includes the way we’re treated by doctors and healthcare systems in general. And yet, many of us live in a state of constant suffering. In 2021 the CDC estimated that an estimated 20.9% of the American population suffers from chronic pain—when split between genders, the numbers for women are higher.1 Of course, much pain goes unreported, particularly in a country where so many of us have inadequate access to healthcare and where so much pressure and reward is placed on productivity. If we’re sick or in pain, we are not producing and are, therefore, useless. Even when we do go to doctors, they don’t often listen—particularly if we’re female (or trans or queer or not white). As Alshammari says, when we’re in pain, “Sometimes we aren’t really looking for immediate solutions, only that your pain is valid. That it isn’t all in your head.” Sometimes we can’t find that validation in the healthcare system and have to look to each other, to build our own communities of care.
As Alshammari moves through her narrative, she explores the intersections of gender, disability, illness, and her own self-advocacy and building a community of care. This isn’t one of those easy-to-read illness narratives where the protagonist overcomes all odds, beats the illness, falls in love, climbs a mountain, or founds a successful company, and lives happily ever after—those are the books healthy people love to read because then they can continue living in a belief system where, if the sick person works hard enough to get better, they can become a healthy person again: a world where chronic pain, chronic illness, and disability don’t exist. That’s not to say that what Alshammari has accomplished isn’t absolutely seen as “successful” in the world of healthy people—she comes from a place where women don’t often go to university, especially not to an English university, and she has a PhD which, really is a nearly-unattainable goal for most women in the still-always misogynist environment of doctoral programs. She’s a successful academic and a teacher who loves her work and her students, and she’s a brilliant writer.
Alshammari doesn’t shy away from the horrors of MS or from her own fear and grief and frustration with herself, her body, and others’ inability to show compassion and understanding. The lack of effort toward compassion or understanding from so many appears in snapshots throughout the narrative—a professor who refuses to allow Alshammari extra time to get up the stairs to class, fellow students who tell her she shouldn’t use an elevator because she’s “not disabled,” and the people who simply don’t want to know or care or support a woman struggling to learn, and teach, and just live in a body that exists in a “state of randomness.” Because of the nature of MS, she’s not always experiencing the same symptoms: “I’ve termed it as ‘random disability’... There’s a lot to think about when you open your eyes and wonder if your fingers and toes still move. If you can actually brush your teeth in the morning or need to come up with a different way to do the same task.” Most people can’t even imagine living like this, much less getting out of bed to teach and write.
Because she is a feminist scholar, Alshammari isn’t just writing about her own experience with bias and/or with MS but she looks at the broader aspects of gender bias, of women’s bodies, and how we exist and sometimes thrive in spaces where the odds are stacked. She writes about friends who struggled with rejection and domestic abuse, and students who struggled to learn while facing intense bias, throughout balancing her critique with radical compassion. Disability narratives and feminist narratives are often connected: “Women’s bodies are different and of course, I know that disabled bodies are in general stared at and made to feel inferior. But think of how many women feel ashamed for being women. How many women fear rejection? How many small deaths happen every day as we continue feeling less desirable?” The disabled body, the aging body, the fat body, the queer body, the trans body—all are marginalized, legislated against, and deemed undesirable in the heteronormative capitalist state where to be desirable is to be productive in “the right way,” the “normal” way. And while oppression takes different shapes in different spaces—whether the white male-centered West mirrored in academia or in Alshammari’s Arabic/Bedouin upbringing—oppression is still oppression. In a recent panel on feminism in Iran, there was constant reference by the panelists to “white feminism” without providing a definition of what the speakers meant by “whiteness” and “feminism” and “white feminism” in the contexts of the Arab world (if one can generalize across Arabic-speaking cultures) and twenty-first century feminism(s). It was frustrating and reductive. Words matter and while of course, what is often referred to as “second wave” feminism was largely centered around the work and writings of European and American women and rhetoric was often too focused on more financially privileged white women ignoring and/or marginalizing the needs and issues of non-white and/or working class and poor women, hopefully, most of us have moved on from that blinkered lens. Feminism must always already be intersectional. And we can all learn a lot from Alshammari and how she writes about gender and bias and the possibility of hope.
This text is not only a deeply important exploration of illness and the body but also an exploration of narrative—how and why we tell stories. Alshammari loves books and found escape and a successful academic career through English literature. As she says, “Stories are who we are. Stories make up our most vulnerable moments, and in storytelling we have the power to gain a sense of agency over our lives.” For a woman living with the daily challenges of MS, to tell stories, to form and shape and speak or write down words is an act of agency and an act of rebellion: “Stories have been the pulse that allows me room to breathe around my ribcage as it pushes against my heart, threatening to suffocate it.” For Alshammari, the idea of the suffocated heart isn’t just a well-wrought metaphor but a reality—a graphic illustration of the symptoms of MS. Writing with an urgency that is sometimes found in prison writing or cancer narratives (Alshammari references Audre Lorde), there is always the physical challenge of creating the narrative: “Tremors never let me finish a sentence without traumatizing the pen, any pen. I had trained my left hand to write, but it could never do a good job. Lately, neither of my hands are doing the job I imagine they had once been able to do.” As I read these lines, I felt a rising grief at the knowledge that eventually this powerful voice will be silenced, and oh, what a loss that will be! But Alshammadi is persistent: “The ending is not what I am interested in. The outcome of recovery is what society wants to hear, but recovery is not the ending I pursue, neither in my life nor my writing. What I am interested in is the healing of the soul from the traumas that are accumulated over the years of the body being damaged.” And while she writes about teaching her students to “think of a beginning, middle and end” she acknowledges that “Writing offers an illusionary structure to narrative. But in illness there is no apparent structure. Days and experiences of pain overlap. It becomes hard to locate a clear beginning.” Structuring her memoir as a conversation with her friend and graduate student Yasmeen, sections begin with past diary entries weaving a non-linear narrative that serves to illustrate the non-linear nature of her illness: “I look at these bits and pieces as a bridge between that which I know to have happened, that which I think happened, and that which I fashion out of a big belief in narrating the self.” The choice of non-linear structure, of shifting back and forth from diary entry to conversation to direct narrative creates a text that reflects the experience of her illness.
Writers and academics—particularly women writers and academics—often lead relatively solitary lives. In many cultures, including the supposedly “liberated” West, it’s often impossible for a woman to build a family and an academic and/or writing career. It’s even more (or differently) difficult for a disabled person to build a “normal” family. As Alshammari writes, “For many people like me, we live alone. Disability has always been a part of my life, as far back as I can remember. Companionship isn’t as easy when your body fails you.” Kudos to those who can, but in a system that always sets up anyone who isn’t a fully healthy cis-gender white male to fail, many of us have to choose. And so we build our families in non-traditional ways—including beloved furry companions. (My cat is staring at the screen as I type this—always helpful, always interested.) For Alshammari, the loss of her beloved dog-companion is devastating. She is unsurprisingly met with a lack of compassion: “People told me ‘it’s just a dog’ and I stopped trying to defend that love. People always want to simplify death … how do we quantify grief?” And I want to thank her for writing these words because, yes, it’s a real loss and even more so for those who have no one else, and it’s a lack of compassion to fail to acknowledge this.
Across these two hundred pages, Alshammari writes of trauma and triumph but mostly about writing and teaching and being human with a strength that should inspire compassion and respect. So many of us struggle silently with chronic pain and illness in our struggle to be seen as “normal” hiding what we are told are failings. In a country where only the privileged few have access to adequate healthcare, we need to acknowledge that to be “whole” or “healthy” is not the norm for many of us. For Alshammari, new definitions are needed: “I am finding new ways of being and becoming, a status among the margins, living between boundaries of illness and wellness, constantly finding new definitions of embodiment and living. I have to learn to exist in this grey area and resist falling into dualistic thinking of good/bad, healthy/sick, successful/failure.” There is no easy ending to Alshammari’s narrative, no trite pull-quotes we can all use for daily affirmations, instead, she’s ragingly honest, and for that and so many other moments across the pages, this text is a necessary read. And to let her have the last word: “If illness is to be feared and has contagion as its constant shadow, then may this book be contagious.”