Janet takes exception to that last sentence, observing that, while she can’t feel in her body what I feel in mine, my pain does affect her. She is pained by my suffering—she so wishes it were different, and her desire to make it so is baffled. She’s right. Pain does radiate out into the social world, because it changes the person who feels the bodily pain, which in turn cannot but affect those to whom she relates. I have no exact account of how pain changes my interactions with my students and my colleagues, but I know there are times when I don’t feel fully present. It’s not that the pain is so bad that it commands all my attention, but rather that it’s so chronic as to act like a kind of screen. I don’t talk much about the pain to anybody other than my therapist, who is not my lover, or my friend, or a member of my family, or my colleague. To her I will complain bitterly, but not to others. I won’t complain about the pain because such plaints become corrosive, and would eat at the ties that bind me to others. It’s not that I’m bravely suffering in silence, but rather that I know there’s nothing to be done.
5
Caring at
the Cash Nexus
“Ah Goddamn it—Jesus Christ, Jesus Christ . . .” I moaned and cursed the pain electrifying my body as I lay in my bed at the Hospital for Special Care. A CNA was by my side, and when I glanced up, I saw a small gold cross on a delicate chain around her neck. Miserable as I was, I thought that I must have offended her sensibilities, and apologized. Her voice was quiet and gentle. “You couldn’t have called on a better name.”
This simple affirmation of her faith relieved me of embarrassment, for Donna transfigured my oath into praise for her Lord. I decided then and there it would be better for me to stop swearing in company, reserving oaths and obscenities for my private relief. I now say “gosh,” “heck,” “darn,” “goodness,” the acceptable refuges of offensive language, and those words no longer feel foreign in my mouth. The only time that I really let loose as I used to do is when I’m alone and have dropped something for the fifth time, or have spilled something, or am troubled with a spasm, or the dog has made a mess—then my language is as foul as it ever was. Moxie Doxie, our alert little dog, doesn’t know I’m taking the Lord’s name in vain.
When Janet and I were trying to prepare ourselves for my return to our home, we were simply overwhelmed. I’d been hospitalized and under the care of aides, nurses, therapists, and physicians for more than five months, and the thought of managing my care alone was terrifying. Friends were an invaluable help, but I honestly don’t know how we could’ve managed that first week or the ones that followed without the help of a CNA. We needed someone to put on the compression boots and elevate my legs, bring me breakfast and feed it to me, and help me with the wretchedly painful work of stretching out ligaments, tendons, and muscles that had atrophied. We needed help getting me to a tub, because our only bathroom was on the second floor. Janet had gotten installed a chair that ran on a rail up the side of the stairs so that I could get up there, but my arrival felt like an epic achievement, every time. To get me to the tub and shower me, Donna had to transfer me (1) from the bed onto my wheelchair, (2) from the wheelchair onto the stair-lift chair that would take me upstairs, (3) off it and onto a folding wheelchair that was stored in a closet outside the bathroom, (4) from that wheelchair onto the shower bench straddling the toilet and the tub, and (5) finally onto the shower chair (like a commode, but without the bowl) in the tub itself. She and Janet together held me upright, played the water over me, washed my hair and my body, and then reversed all those steps to take me back to bed—without Donna to do those ten transfers, helped by Janet, I would have had sponge baths for months and months. Donna had been a steady, sure, skilled help to me, working the second shift every weekend of my long months at the Hospital for Special Care. I knew that I felt comfortable with her. Her mother had died right around the time that I broke my neck, so as I was crying over my broken body and upended life, she was in the first flood of deep, deep grief for her mother. We were both in mourning. Sometimes we talked, more often we were silent, and both were okay. So I asked, will you come to Middletown and work for me 8:00–12:30, Monday through Friday? To my enormous relief, she said yes.
Donna still cares for me, and will continue to far into the future, if I continue fortunate. I love her, and she loves me, for a decade of intimate care has created an intimate bond. We’ve talked about a world of things. She knows that I’m not a church-going Christian, though I come from a Christian family, and I’ve told her directly that I respect her religious faith and religious practices. I’ve told her lots of stories about my family life, and have gone on at some length about the evils of capitalism as we know it. She understands that Janet has become the chief executive officer of our home, and goes to her when medical supplies need to be replenished—indeed, when any household matter needs to be addressed. She knows me, what I can—and, as importantly, can’t—do. She knows a lot about my relationship with Janet and the terms in which we understand ourselves.
For my part, I know that Donna is a Pentecostal Protestant and has had the life-transforming experience of being saved. She actively studies the Bible and regularly attends the church to which her mother took her five children every Sunday. I know that her loving mother moved those children to Hartford from Brooklyn after her husband was robbed and shot dead in his cab. Donna was six years old. I know how hard Donna has worked to rear well her daughter and son, and now Kyla has graduated from college and Tyler has graduated from high school. I know that she looks to God every day—every hour—for help, and the gospels that she hums as she works suggest that her mind is often on her Savior. I know in a way that I never could have learned otherwise than through such an intimate relationship how bitterly, sometimes desperately, hard it is to be working poor. To have only the change from a twenty that you broke when you got gas, and you have yet to get groceries. To be indentured to the used car dealer who will sell to you even when you have lousy credit, only to trap you in a debt with compounding interest that will continue to demand repayment long after the car has been towed away.
Donna works harder than anyone else I’ve ever known, and still has constant, nagging, impossible-to-forget worries about upcoming bills. She picks up extra shifts at the hospital all the time, even as she is working a second job for me. She works “doubles,” sixteen hours straight through. Yet the bills keep coming. We’ve talked about how easy it is to get a “payday loan”—just google the phrase and you can see for yourself. Online or in person, the application takes but a moment, and will screw you for years. Check out CashAdvance.com. Here’s what you’ll learn about interest rates if you scroll down, down the page past the many smiling faces to the small print:
The APR on a short term loan can range from 200% to 2,290% depending on how the APR is calculated (nominal vs. effective), the duration of the loan, loan fees incurred, late payment fees, non-payment fees, loan renewal actions, and other factors. Keep in mind that the APR range is not your finance charge and your finance charge will be disclosed later on. [my emphasis throughout]
CNA work is hard and low wage, which means that in Connecticut and New York City many of the workers are African Americans or Caribbean immigrants, though here in central Connecticut, the working class also includes many immigrant Poles and Latin@s. Most patients in a rehab hospital are unable to stand without assistance, let alone walk. Many are simply dead weight. Aides must transfer them from bed to wheelchair and wheelchair to bed several times a day, and help people on and off the toilet, all day long. They have to lift and turn patients in bed, a task that will simply kill your back if you don’t do it right. CNAs everywhere now work short staffed as a matter of course—it’s called “enhanced productivity.” While profits as bright and light as digital numbers flow upward, bodies remain intransigently heavy. Donna’s in her early forties. She has a bulging disc in her neck, which radiates pain, and a knee badly in need of replacement. Frequent headaches are just a fact of life. Not a day passe
s without pain, though some days are worse than others. I’ll see her put a hand to her back or rub her neck, involuntary gestures that announce she’s hurting, and now and then she walks with a pronounced limp. Her doctor advises her to wait for surgery until she absolutely can’t stand the knee pain, because a mechanical joint lasts only fifteen to twenty years. Artificial joints wear out like the body parts they replace, and eventually the replacement has to be replaced, so best to push back the first operation as long as possible. Working in the hospital is also highly stressful. Short staffing requires that the CNAs on the job always have patients waiting for care, with their call lights reproachfully blinking. Aides and nurses are always behind. Donna keeps her responsibilities alive in her head, which is great for me—she remembers my schedule even when I don’t, and anticipates what I need. In the hospital, however, that organizational capacity of hers is wearing, because while she’s helping one person, she’ll have in mind the woman who needs to get from her bed to the toilet, the other woman who asked for pain medication, and the paralyzed man with a bedsore who has to be turned right on schedule, right now. That’s high-stress work, and a very hard way to make a living.
I’ve read that certain populations in our country are given over to “slow death,” among them workers in the bottom-level jobs of the one reliably expanding industry in the United States, healthcare.1 The business section of the New York Times reports that “personal care aides will make up the fastest-growing occupation this decade[, and an] Economic Policy Institute study found that some 57 percent of them live in poverty.”2 That phrase, “slow death,” captures the endless process of wearing down, the enervating demand of small yet consequential decisions (Can I bring takeout home for the kids tonight? How much can I pay on the electric bill so they don’t shut it off?), and the quiet despair that can suffuse everyday life. Wellness programs, like the one directed at CNAs at the Hospital for Special Care, are just another reason to feel bad about yourself—why aren’t you going to the gym, with weight machines and elliptical machines and a heated pool, just waiting for you? Regular exercise, moreover, is just the beginning of what’s required for a healthy body. With Michelle Obama’s bright encouragement, you know you have only yourself to blame for making poor “choices” that undermine your family’s health, starting with decisions about food. Such decisions, however, can be imagined to be those of an autonomous and freely willing subject only if you abstract the embodied realities of grinding poverty into weightless ideas—it’s called “grinding” precisely because it wears you down and wears you out.
I smoked cigarettes in college, but gave it up years ago. No one I know at Wesleyan still smokes, though when I came in 1982 I could always bum a cigarette at a party. Now the people who smoke are the ones working low-wage, high-stress, physically demanding jobs. People smoke in order to take a break and hang out in the parking lot with their friends, and they smoke to schedule in the sharp pleasure of doing what their bodies desire in an otherwise dreary and repetitive day.3 Coke delivers caffeine and a much-needed sugar kick that feels good in the moment. Fried food tastes right and at McDonald’s reliably will taste right every time. You can pick it up at the drive-through and eat it in your car driving to your second job. If you look at the advertisements on daytime TV, you’ll see (1) personal injury lawyers asking if you’ve been injured at work, and (2) diets organized around prepackaged food that costs a lot just because it’s prepackaged, and (3) smoking-cessation programs. You may be on your couch watching daytime TV because you were hurt on the job, but you could, nonetheless, lose weight and quit smoking. You could make healthy choices—if you don’t, it’s your own damn fault.
I know a lot about Donna, yet her life remains, in many regards, unknown to me and unknowable. She works for me, in my home, and has to learn my ways and the ways of my household. It’s just a fact that black people know “the ways of white folk,” in Langston Hughes’s turn of phrase.4 Black people in this country have been taking care of white people in their homes as domestic workers for centuries, necessarily amassing many generations of knowledge about the oddities of how white people live. I listen to arias from Baroque operas that were written for castrati who sang in the soprano range, music now performed by countertenors, who are men singing in falsetto. How bizarre is that? Neither I nor the white women who are my colleagues will be taking jobs in the homes of black women, and getting to know their lives as only a caretaker can—intimately, every day, over time. Of course Donna knows more about me than I know about her. I know that we depend on each other. Our mutual dependence does not, however, bring me into her household, and there’s plenty I don’t know about her life, despite our personal closeness.
To rebuild our lives after my terrible accident, Janet and I turned to our families and friends. Their financial support made so much possible that otherwise would have simply been out of reach that first terrible year, and I continue to be actively thankful for their open-handed generosity. We’ve told Donna that if there’s ever a crisis she can come to us, and forgo the payday loan. Borrowing from us, she would be spared onerous interest rates. We can get our hands on money. She can’t. Our good intentions, however, can’t transcend the structural racism that has advantaged us so grandly, and disadvantaged her so wrongly. I am seriously worried about patronage, for which there are all too many precedents. The black artists of the Harlem Renaissance, including Langston Hughes, were patronized by well-off “white folks” who supported “their” authors, facilitated the production of “their” artists’ books, and then took the privilege money afforded them to suggest how “their” artists should go about their lives. What if Janet or I somehow patronize Donna? The prospect makes me ill. My delicate feelings, however, are no guarantee against patronage—our intimacy is very real, but it’s we who have the money.
There’s a constitutional amendment forbidding slavery, and indentured servitude has long since been a thing of the past, but as of the early twenty-first century, white people with money too often still do not honor the workers who labor in their homes or compensate them fairly. Were wages calculated on a different scale, according to how dearly loved are those in need of care, domestic labor would no longer come so cheap! Righteous anger may be some relief, but there’s no ethically safe solution for me, or for any employer of caring labor. Political action is the only effective response to systematic injustice. My contribution as an educator has been teaching Valuing Domestic Work, the fifth in the Barnard Center for Research on Women’s series New Feminist Solutions.5 It’s a report “based on a three-year collaboration with Domestic Workers United (DWU) and the National Domestic Workers Alliance (NDWA),” which lays out the political groundwork required for transformative action. I don’t confuse putting this report on my syllabus with the work of organizing. Teaching the report is instead a way to name social reproduction as an object of knowledge consequential to feminist thought, and to link my dependency to a broader vision of caring labor and reproductive work. It is to see the political in the personal and the personal in the political.
I must simply admit, however, that my personal relationship to Donna is an irresolvable contradiction. We meet at the cash nexus, the labor market. Donna brings to that market her bodily capacity for work and her imperative need for money, while I bring money and my imperative need for help with my bodily incapacities. Donna can’t live without money, and I am glad to pay her what I owe. Yet money cannot begin to measure the value of her work. Money cannot calculate what Donna’s presence does for me or how she goes about the profoundly intimate work of helping me manage my body. I value her for who she is, the beautiful, gentle, skillful, kind, sad, singular person that I love.
6
Lost
in Space
By the time I was discharged from Hartford Hospital, I was skeletal. I didn’t know that startling fact because I didn’t know anything, really, about my body. Muscle atrophies at an alarming rate, especially when you’re on an IV drip of glucose soluti
on for three and a half weeks. Later, when I was in the Hospital for Special Care, I was fed through the gastrointestinal tube that snaked from a machine beside the bed and then disappeared under the covers. I would get hooked up every night before the lights went out at 9:30, and would hear a faint hum as puréed goop went through my abdominal wall into my stomach. I wore a johnnie, of course, when in bed, one of those curious hospital garments of indifferently printed fabric that tie behind your back, ensuring hospital personnel easy access to your body. I intentionally chose not even to try touching my body underneath that fabric, and turned my mind away from my flesh. I was afraid of the tubes, one putting food into me, the other a catheter that took urine out. You could see it dripping yellow into the Foley bag hung on the side of the bed, that big bag necessary to collect the urine flowing from the catheter inserted into my urethra.
When I would get stripped and then rolled over onto the shower gurney and wheeled into the shower, I couldn’t hold my head up to see my body. I never asked for a mirror, and when I came upon one now and again in the physical therapy room, I would assiduously look away. Not only was it very difficult, quite literally, for me to see my body, but also I was afraid to know. I had no sense of what all the metal in my mouth was about, vaguely imagining I had braces, since I didn’t understand that bars were arched over the roof of my mouth to keep it from collapsing. Nor did I grasp how the plastic surgeons had worked on my face. I have a scar under my chin where, incomprehensibly, the surgeons pulled the skin up—like turning a glove inside out—so as to repair as best they could the shattered bones thus revealed. Grasping the enormity of the injuries that I had suffered was too hard. I could not tell with any exactitude where I was in space. In the first months when I was in the hospital, two aides had to work to position me before lights out, using pillows behind and between my legs to keep me lined up just right. The instructions for this positioning were drawn by my physical therapist and posted on a bulletin board above my bed, and I had been present when Dr. Seetherama discussed with the nurses the importance of so arranging my body to minimize my pain. Janet told me repeatedly all that had happened and was happening to me. I simply could not take it all in. My body was alien to me, and lost in space.
A Body, Undone Page 4