My Sister is Sick: A Gallbladder Story
Early January
It’s freezing outside. I wear my big heavy coat and scuttle into the building from the darkness of the early morning parking lot, coffees in my hands. I nod to the guard at the security desk as the elevator doors slide close, smile at the nurses at their computers, and carefully open the hospital room door. My black winter boots click-clack across the linoleum of the quiet room and I hand a coffee to my brother-in-law, Jon. My sister Lily lies on the hospital bed, her back arched in agony, her pregnant belly supported by pillows, eyes closed, fists clenched against the source of her pain – a gallbladder full of sludge that doctors can’t remove for fear of hurting her unborn son. They’re late with the pain medication again.
I’m immediately angry. I take my coat off, set my coffee down and leave the room. I find a nurse and start with civility: “Excuse me, my sister was supposed to have her pain medication an hour ago.” Eventually I’m in the hall, by the nurses’ station - anywhere I can be visible - with my arms crossed, tapping my boot, waiting. I’m not beyond a grand “Terms of Endearment” gesture. I can be Shirley MacClaine sweeping through the floor, tearfully demanding treatment, if that’s what it takes. But finally the nurse is there, albeit seemingly in slow motion, pulling the vial of Dilaudid from her pocket, asking my sister to rate her pain on a scale from one to ten, unscrewing the cap on the IV tubing, pushing the medication through. Slowly Lily’s muscles relax, the grimace leaves her face, and her fists unclench and move away from her side. My body language follows suit.
She begins to doze fitfully and Jon leaves for work. I listen to the beeps of her heart and oxygen monitors and look around the dark hospital room. It is strewn with the detritus of an extended stay. Blankets and pillows are bunched on the narrow couch that serves as a visitor bed. A sweater is draped haphazardly over the chair in the corner. A water bottle, a fast food cup, the essential oil diffuser we brought from home. The adjustable tray table next to Lily’s bed is a tableau of sick: a throw up basin, a washcloth, a Styrofoam cup holding a mouth swab to moisturize Lily’s dry lips, the alcohol wipes she presses to her nostrils to stave off her nausea, tissues, three kinds of chapstick stacked in a row.
I channel my nervous energy into organizing the chaos. I fold the blankets on the couch, refill the diffuser with lavender oil and water, and place flowers from our father in a spot where Lily can see them when she opens her eyes – thinking and rethinking their placement as if I’m staging a set (I sigh, longsuffering, from the corner when the nurse moves the vase back behind the trashcan the next time she comes in). I hide my snacks for the day in a nook where Lily won’t notice them. She’s not allowed to eat or drink anymore. Not until my nephew is born. Putting anything in her mouth will cause her gallbladder to flare, they can’t remove it until he comes out, and no one can tell us when it will be safe for that to happen.
The day inches by in three-hour Dilaudid dosage intervals. When Lily arrived at the hospital a week ago, in the infamously blinding agony of a gallbladder attack, there was a flurry of plans to induce labor and quickly remove her gallbladder. But with each shift change comes a new strategy, new doctors making rounds with new ideas for incubating the baby for as long as possible. We have to raise our hands and ask about Lily. What about her pain? What about her gallbladder? What is vitally important to one doctor seems to be of little consequence to the next. We are powerless as we try to decipher a picture from the puzzle pieces we’re handed from the rotating obstetricians, midwives, hospitalists and gastroenterologists that come by her room. The plan comes slowly – and it is a non-plan. Wait as long as possible. Don’t eat or drink so the gallbladder doesn’t flare. But what should she do for nutrition? IV nutrition. And pain? Dilaudid. Will it hurt the baby? No.
We record the movements of the doctors and nurses in a notebook in an effort to keep up, the handwriting changing from my sister, Tory’s all caps to Jon’s skinny scrawl to my half cursive and back again as we cycle through shifts at the hospital, noting medication names and dosages and times – misspelling Dilaudid a dozen different ways. Lily’s veins keep blowing from IV’s and blood draws so they insert a peripheral catheter by her heart to put everything through instead, including the nutrients that feed my sister and my nephew, a heavy bag filled with a white liquid that closely resembles a Pina Colada. We joke that it’s five o’clock somewhere. But it’s not. It’s 9:40am, Lily has a fever, the meds aren’t cutting it, and she thinks she might throw up. We try to distract her with DVDs on the tiny TV (the hospital Internet doesn’t support streaming) but she can’t focus. My sister, Tory extends her visit from Austin. My mom drives back and forth from Orlando. We wait.
Lily’s pain is excruciating when her pain medicine is late and yet she is worried about its effects on the baby. Lying in her bed in agony, Jon and I standing next to her, Lily asks an Ob-Gyn about the risk of constant pain medicine and its effects on the baby versus inducing labor early. We are more than a week into the cycle of terrible pain, pain medicine, daily discussions about when to induce and no real plan. She wants more information.
When I ask Lily to describe her story today, the details of the hospital are very cloudy to her, but there are a few things that stand out. Lily remembers her pain - what she describes as, “A vice crushing your ribcage and a fire coming up in the middle of your chest at the same time.” She remembers the way it felt to be treated by healthcare providers that believed this pain and by healthcare providers that didn’t. And she remembers this moment with the Ob-Gyn
Lily’s gallbladder doctor explained from the very beginning of her treatment that her pain would not improve until the baby was born. As a result, her treatment plan was pain management until the doctors decided to induce. There were a few nurses who adhered to this plan; they brought her pain medicine on time. They asked her to tell them what her pain truly was. “Now tell me the truth,” one would urge, making sure Lily wouldn’t understate her pain. But there were many nurses and doctors who didn’t believe her. “I continually got that question,” she explains, “Whether outright or with weird looks: Are you really in pain? Is your pain really that bad? And unfortunately the greater majority didn’t believe me when I said it was.”
There’s a unique indignity to being in an unbearable state of illness and agony and being pressured to prove it, not once, but multiple times a day, often when you most need relief.
And so Lily struggled in pain, Jon and I standing next to her, and she asked the doctor to compare the risks of inducing labor to the risks of constant medicine and its effect on her baby. She needed a plan. Lily remembers this because in this moment she tried to use her voice. And in this moment she was hushed. The doctor did not respond with an answer to her question but with a story. A story that communicated that she also didn’t believe Lily’s pain. Instead of accepting the level of agony that Lily was in and discussing options for moving forward the doctor gave an anecdote about a pregnant cancer patient who delayed chemotherapy, suffering so that she could bring her baby to term. Lily remembers this moment because here was a doctor who, despite knowing Lily’s diagnosis and treatment plan, despite assuring us that her medicine was not harmful and that we were pursuing the best course of action, was implying that Lily’s pain was not as bad as Lily presented it to be. If a woman with cancer could suffer through a threat to her life, Lily could suffer through a little discomfort. It was meant to be an inspirational speech, but it was missing key pieces – 1. Lily had communicated that her pain was insufferable. And 2. It was unclear why suffering was necessary. Jon and I stood there for a moment, holding these pieces, struggling to apply them to the story. Finally Lily broke the silence, using her voice once more. She slowly tried to push herself up on her elbows, attempting to bring herself out of her fog of pain and medication, “But…but I don’t have cancer!”
I see the anger, fear, exhaustion and confusion on my sister’s face and I finally find my voice again. I try to ask the questions I know Lily would ask. The ones she tried to ask before. Is the pain medicine bad for the baby? Again we’re told no. Is it time to induce? Again we’re told that we’ll revisit it tomorrow. The doctor asks Lily to try to take the medicine less and get her pain down on her own when she can. How or why is completely unclear. And then the doctor walks out; leaving the mythical cancer patient hanging like a specter in the room, a stronger and better woman whispering to Lily that she isn’t good enough because she won’t deny medicine and “suffer through.” It is clear to the rest of us, however, that suffering through is exactly what my sister is doing.
When I ask Lily now if she can think of a reason why her pain was so consistently doubted, why her description of her symptoms was so frequently questioned, I expect her to maybe talk about the opioid crisis in America; about the requirement for healthcare workers to be more careful with the ways that they deliver pain medicine. And to be sure that is an issue, but Lily does not believe that this was primarily at play in her experiences. A pain management regiment had been set up during her hospital stay– and when she brought up concerns about opioids, doctors advised that they were not worried. Lily also explains that the consistent doubts healthcare workers exhibited about her perception went beyond pain. A nurse who didn’t believe how badly Lily had to go to the bathroom, despite her insistence. It only feels like you have to go, the nurse told her. She wasn’t convinced until Lily peed all over the floor.
“So what was it?” I ask. Lily laughs when she gives her response, as we do when we think we might be saying something too radical. “The patriarchy.” She follows this with, “It sounds ridiculous.” But then she adds her explanation, one that goes beyond what some may see as unbelievable conspiracy to what is just a simple tradition of society, “It infiltrates into this insidious behavior where somewhere in it, both men and women alike are trained to question what a woman is telling them.”
She goes on, “When you’re not believed enough times you begin to question yourself. Any reasonable person who looks at something going wrong, presents that information, and gets back [a response that says] ‘Well maybe that’s not how you feel.’ Any person would say, well, if this many people are telling me that I’m not feeling this then maybe it’s just something that I’m making happen.”
Lily genuinely still wonders if she needed the pain medicine while she was in the hospital. Despite having her own horrific experience with the pain, despite objective imaging of a diseased gallbladder so bad they wouldn’t let her eat. She still thinks about it. She shakes her head, “You have scores of women being second guessed to the point where scores of women second guess themselves, often before they get any words out of their mouth.”
It’s a shy nurse that whispers to us in the middle of the night, “Be careful with all these meds, it’s going to make the baby shaky when he’s born. Very shaky.” “Really?” Lily asks. The nurse nods solemnly. “Don’t tell anyone I told you,” she adds ominously. She was the only one that did tell us, and she was 100% right.
And so we begin to push harder to induce. The baby is big enough. It was time. Finally, after two weeks, after pain and nausea, no food or water they do induce. And after 48 hours of labor on nothing but IV nutrition, reacting to labor-inducing drugs with relentless vomiting of green stomach bile, and after a cesarean section, my nephew was born. He was very shaky. And so was Lily - but because she was no longer pregnant her gallbladder pain greatly decreased, and after a few days so did his shakiness. And before long they were both home.
And then two weeks later she was not.
Late January
“Let me back. Let me back. Letmeback, letmeback, letmeback.” I stand at the door to emergency triage and treatment waiting for the woman at the front desk to let me in. Same arms crossed, same boots tapping, same coat on my shoulders, same powerless to help. My sister is sick. My sister is in pain. I need to get to her. Jon called me not a half hour ago; Lily was on her way here in an ambulance, Jon unable to follow because of the new baby.
The new baby. Lily had just drifted back to sleep after putting him to bed when the pain woke her. It was more intense than it had ever been before, radiating into her chest and gut and arm. She thinks blood clot, heart attack, gallbladder rupture – but mostly all she can think is to breath through the pain. She asks Jon to call 9-1-1. She’s terribly afraid she might be dying.
After what feels like hours the paramedics arrive. They find her breathless, leaning against the credenza in her foyer for support. They don’t ask her where it hurts. There is a home bar set up stylishly atop the credenza and so they ask her if she’s been drinking. “I just said no,” she tells me. I was angry; I was furious. But I just said no because I was like GET ME TO THE HOSPITAL, GET ME OUT OF HERE. I was terrified. My hands were tingling. I was in so much pain. I felt like I couldn’t breathe.” Through gritted teeth she tries to explain her pain and her fears, “I just gave birth, I just had a C-section, and I have a diseased gallbladder. Blood clot? Heart Attack?” The men exchange apathetic looks, shrug their shoulders, and explain that it would be easier to not bring the stretcher up her front stairs. “Can you just walk?”
Sobbing and in screaming pain, she kissed Jon and her two-week-old baby goodbye, scared to death that she might never see them again. And, like the badass she is, she walked down the fucking stairs to the ambulance because the paramedics didn’t believe that she was in the pain that she was telling them she was. They didn’t believe her when she said that something was wrong with her body.
When I am finally let back into triage and treatment, I hear Lily before I see her: moaning, crying, and alone on a gurney in an empty room. In the time following I try to help her breathe through her pain, chase down nurses and directly call her established doctors. Finally an ER doctor comes in. He listens, he has a calm presence and he asks a question that makes Lily cry,
“When was the last time you weren’t in pain?”
She realizes it’s been months. He turns to me. “You’re so supportive.” And then we both watch as he slides his hand onto my knee. A beat. A squeeze. Oh boy.
The patriarchy. Did he believe her pain? I think so. But, whether he was consciously charging it or not, there was a price.
I carefully calculate my response. I consider the past month. And then I smile and in my sweetest voice I tell him the pain medicine Lily needs and the doctors he needs to call and the tests that he should run. He leaves and returns quickly, with the pain medication, and the test orders, and apple juice, and seeing if either of us needs anything – the most attentive doctor I’ve ever met. My sister’s pain is relieved, and two days later she is in surgery finally having her gallbladder removed. I smile real sweet when we see him at discharge.
Illness can be especially silencing, even for the most powerful among us. Pain, disease, and trauma often rob us of control of our own bodies and put us at the mercy of the healthcare system. When we are not believed, when we are treated with skepticism or judgment - when your sister has to fix her hair and order the ER doctor around to get you the treatment you need - we often begin to doubt our own agency, mistrust our own perception, and misplace our power. We can feel lessened by disease and by the individuals who wield care, medication, tests, and treatment. You can cross your arms, tap your toes, stomp your feet as loud as you want. The wheels turn, as they like. Our bodies lose power to illness; our illness loses power to industry.
And yet within this we still find hope. There were so many frustrations along the way with my sister’s treatment. But there were also wonderful caretakers. Incredible nurses who reminded her of her humanity again. Lily named her son after her gallbladder doctor, a kind elderly man who dressed in three piece suits and calf-length camel coats and listened closely and explained things slowly every time we had a question. It was a tech who comforted me after my dog died in the middle of Lily’s hospital stay. Lily attributes her pain-free breastfeeding journey completely to what she learned from her nurse in the maternity ward.
You will lose power with illness. This much is assured. How do you find it again? For Lily it was in the small moments. In the courageous questions she managed to lob at rushed and jaded doctors. In the digging-deep agony of taking steps paramedics should have carried her down. In the 48 hours of labor after having nothing but IV nutrition for two weeks. It was in the scrawling, misspelled logs in the bedside notebook that she found months later. The moments when she knew that the people she loved were standing next to her, trying to funnel some power back her way. Maybe fixing their hair and ordering the doctor around a little bit, losing a point for feminism, paying the small price.
Lily spent the last phase of her pregnancy and the first phase of her motherhood in incredible pain and powerless to stop it. But through this she found a sense of her own strength, “My body created a person,” she tells me five months later, sitting on her couch in Atlanta, nursing her son. “It’s providing food for that person. It’s getting up every day. It went through withdrawal [from pain medication after surgeries] twice. And so sometimes I feel good about my body, I feel like I can trust it again because it took it care of me through all those things. And even when it felt like it wasn't going to work anymore, it still kept me alive.”
How do you find your power again? With practice, with courage, often as a part of the healing process - even, maybe especially, when we are not cured. It’s any moment when you remember that it’s your body and you are the ultimate authority on its symptoms and its care. It’s any moment when you remember that you are more than your illness, that your body is capable of many different things. And it’s now, understanding that whether you are sick or well, we are capable of receiving and sending strength to one another. That’s pretty powerful.