A hybrid of feminist memoir and cultural critique, my book in progress ALREADY TOAST: CAREGIVING UNDER PROTEST is a timely exploration of the unpaid, often invisible labor of caring for the seriously ill, emphasizing the perspective of the younger caregiver. When my husband was diagnosed with aggressive lymphoma two years ago, and subsequently endured a risky and near-fatal bone marrow transplant, I was entirely unprepared for how heavily the burden of caregiving would fall on me—and how thoroughly it would take over my life.
As I struggled to cope with the strain of my partner's rare and severe illness and all responsibility for formerly shared childcare and household management, I found I had no time, and no sustained attention, for my work as a freelance writer. I also had little time for reading, a favorite pursuit, though in odd moments I returned for comfort to old favorites: Little Women, Jane Eyre, and more. I found them to be full of forgotten caregivers, many of whose challenges looked surprisingly familiar to my modern eyes. The book, which employs a creative-nonfiction style, offers a raw look at the challenges of caregiving and engages critically with the contemporary culture of cancer and illness, especially the rah-rah think-positive memes that push women in particular to sugarcoat their experience, framing it as a “journey” or glibly telling sufferers “you got this!” Throughout, I weave in discussion of classic books that depict caregiving, using these to structure the book thematically around issues ranging from my and my husband’s appearance changes to questions of duty and equality in modern marriage. I argue throughout that the modern medical establishment takes the hidden work of family caregivers, particularly women, for granted—but that that work comes with a serious emotional cost for the women involved, as it did for me.
For an excerpt from the introduction, please see below.
If I type “caregiver” into Google, the first auto-filled suggested search is “caregiver burnout.” I discovered this dispiriting fact just after a miserable day in my husband’s oncologist’s office. The news we received there had not been any more grim than it had been over the preceding year and a half of his cancer treatment, which included a debilitating stem cell transplant. But on that day, I was so exhausted by the grind of caring for him that I was at the end of my ability to cope. I cried silently throughout the appointment, to my embarrassment, and the oncologist chided me for not taking good enough care of myself. If I didn’t, he said, how would I be able to take care of my husband? The plain implication—that the only point of me, as a human person and not coincidentally as a woman, was to care for him—angered me deeply. It made me feel, as I said to my husband, like acceptable collateral damage in the fight to save his life. And yet I dutifully went home and googled for resources to help myself. This act of so-called self-care felt like yet another task I resented, yet another obligation I had to fulfill to hold everything together during the cataclysm of my husband Brad’s extreme illness.
The top search result was a quiz to determine whether the caregiver taking the quiz is burnt out. I took it. At the end, the page gave me the oddly breezy result, “You’re already toast!” illustrated with a stock photo of a burned piece of bread. The quiz result recommended taking more time for myself, getting a massage or taking walks, arranging for care so I can have an hour to myself, or an occasional night away. But it said nothing about what to do when you already were doing all that and were burnt out anyway. In more than two years of caring for my husband, I many times considered simply turning around while driving to the pharmacy or the grocery store, heading to the airport instead, and buying a ticket on any plane going somewhere semitropical, preferably Hawaii. Of course, I never got far enough with this fantasy to think through the actual fallout that would ensue: Abandoning or alienating everyone I’ve ever loved, everyone who has loved me. Shocking our friends. Further traumatizing our already fragile children. Producing a lifelong load of guilt, by becoming a person who abandoned my husband at nearly his lowest point.
And yet I too have been at a low point, emotionally if not physically. I didn’t get ill, but my suffering—emotional though it may be—was and is real. But nobody is thinking, “If I left, what would happen to her?” And so I feel duty bound to soldier on. I am fortunate in that my husband seems to be recovering. (I say “seems” because, even though he has been getting better, his cancer could return at any point.) But his cancer and the few ups and many downs of his treatment have taken an enormous toll on us both.
My manuscript in progress Already Toast is the story of that toll, and of how heavily the burden of caregiving can fall, especially on women. Above all, it’s the story of how it fell on me. But it’s also a story of caregiving in our culture, of the ideals and norms of how this often hidden but crucial task is written and read. The longer I acted as a caregiver, the more I started to remember and revisit caregiving relationships in literature: Jo tenderly nursing the dying Beth in Little Women, Grace Poole drinking and neglecting her mad charge in Jane Eyre, Dorothea Brooke refusing to promise her ill husband Mr. Casaubon her allegiance after his death in Middlemarch.
Caregiving implies love, caritas (the same root as charity). Care that has been given, voluntarily. In the UK, the equivalent word is carer, which I prefer—it feels less dishonest, or perhaps less like sugarcoating. Nobody asked me to give my care; it was, instead, demanded by necessity, by exigency. Nobody in the medical profession saw the cost, for me or for my family. Although I had help, and I was and am grateful for it, there was nobody else to ensure that all the things that had to be done were done: nobody to ensure that Brad’s life was saved, that our family had a chance of recovering itself. Nobody to pay the bills, fill the prescriptions, be our children's parent.
My work, my time, my self, my sex life, my priorities, my essential being: with Brad's cancer diagnosis, all these became an acceptable price to pay for keeping my husband alive. Not just acceptable, expected. Assumed. His doctors have never asked if it was okay with me to put my entire life on hold to help save his. The people who schedule his medical appointments have never asked if times of those appointments worked for us, conflicted with anything, might be inconvenient. It is assumed, utterly and completely, that I gladly and willingly lay down my life—not the actual breathing in and out and heart pumping blood but nearly everything else—for others, for this cause. That I will subsume myself. That I gladly become unseen. That my husband’s cancer will expand out to swallow me, take me whole, even as it takes him. I don’t have cancer but it sure as hell has had me. I became collateral damage. I became always already toast.
For an excerpt from the manuscript, please see my essay "Leslie's House of Nightmares," which appeared on Avidly.
Kate Washington is at work on a manuscript about caregiving in her life, our culture, and literature. She holds a Ph.D. in Victorian literature from Stanford University.