Division of Labor: When You Crave Order and Your Family Doesn’t

“And what are you here for today?” a nurse asked my mother.

My mother looked up from her hospital bed, eyes wide with a vague concern that indicated she thought perhaps she was in trouble. The nurse tried again: “You’re getting surgery in your . . . ” My mother lifted her arm tentatively and pointed to the part of her body she could recall was sick: her lungs. “No,” said the nurse. My mother’s eyes widened further. She slowly lifted her hand toward her head.

“She doesn’t know. That’s why she needs the surgery,” I said curtly.

“Of course,” the nurse said to me. “Sorry. It’s just protocol.”

My mom did, in fact, have lung cancer—that much she understood—but the surgery was for two cancerous tumors that had taken hold in her brain, both on the left side, one in front and one in the back. It would require two separate surgeries, a few days apart, to remove them both. Though her cognitive faculties were temporarily and severely impaired, her prognosis was good. “Two more weeks and it would have been terminal,” the brain surgeon had explained when he showed us the MRI. He said this calmly, right in front of my mother, who couldn’t comprehend the conversation anyway.

*

Growing up, I was always the good girl—the “Golden Child,” as my parents and brothers called me. In a family of people who didn’t like to follow the rules, I was the exception. My brothers were never expected to be so well-behaved, to do as well as I did in school, to be liked by teachers and other adults as I was. My parents were more like my brothers than like me, quirky and unbounded. Though they were the adults in our lives, they weren’t the true authorities—at least not in the way I thought other parents were. And so I made my own rules where I could: in team sports I played with stern but loving coaches intent on teaching life lessons; in the notes I took in school, with their little bubbles and boxes of information to memorize and digest; in the dresser of cubbies I kept in my room, each compartment filled with different cherished objects.

I loved the freedom afforded by my parents’ natures, but I always craved more structure than my loving home could provide. I remember I was grounded by my mother exactly once. I was dating a boy she didn’t like, and she imposed a curfew on me for the first time in my life. I liked rules but hated inconsistency, and so I resented the targeted nature of her sudden restriction, and revolted. When I returned home after curfew, expecting minor consequences if any at all, I found my mother in a fury fueled by her fears about my emotional safety with a boy she didn’t trust. She grounded me for all of spring break. While shocked and angry, I accepted my punishment with a strange feeling of comfort in its simple clarity; the newly imposed boundaries felt, in a way, like a firm and steady hug. I spent most of that week reorganizing our family linen closet, pulling heaps of accumulated fabrics from the shelves—pillowcases with holes and stains, blankets no one liked or used, crib sheets that had long outlived their use—and sorting them by size, shape, purpose. When all were stacked in the appropriate places, I stood back to admire my work, feeling pleased and accomplished.

Out of the vast expansive liberty of my youth, I tried to create discrete, ordered spaces to inhabit. When each of us moved out and eventually started families of our own, my brothers’ homes continued to be, like my parents’, loving but scattered. Mine, with the help of my like-minded husband, was organized in the way that had always brought me comfort. When my parents moved out of our childhood home and into a townhouse in the city, I took my old dresser of cubbies with me to Boston to use for my children’s toys.

*

One day last year, my younger brother called me worried about my mother’s increasing lack of control over her speech and lapses in memory. By then she had been receiving chemotherapy for stage-four lung cancer for two years, and had been doing remarkably well. While I’d noticed some strange speech patterns in our recent phone calls, I had assumed it was simply due to a slow recovery from an unrelated eye surgery. My brother, unconvinced, pressed his investigation, sending a family friend over to her house to get a sense of how bad it might be. When she asked my mother to sign her name, my mother froze: She couldn’t remember how.

My brother was the one who revealed the problem, but he was powerless to make her act. My older brother, who hated conflict, would be equally ineffectual, I knew. And so I got on the phone, the “Golden Child” to the rescue. First I called her primary care physician. Based on the information I gave her, she agreed with our concerns and promised to follow up with my mother after I spoke with her. Then I called my parents, my chest tightening as the phone rang.

When my mother answered, I asked how she was feeling. She began to respond with vagaries about how blessed she was—she was always looking on the bright side of things, even since her cancer diagnosis—but I cut her off before she could get very far. “You need to go to the hospital now,” I said.

“We’ll go in the morning,” my mother said.

“If I call tomorrow morning and you’re not at the hospital, I’m coming out there and taking you there myself,” I told her, in the same voice I use when disciplining my children.

It was a voice I had never before directed at my mother. Through the fog in her mind, she must have sensed the seriousness of my request. She promised to go to the hospital the next morning, and I promised to check to make sure she did.

In the morning, my father called from the ICU. “It’s a brain tumor,” he told me. “They said it’s a good thing we came when we did.”

*

I bought a plane ticket from Boston to Chicago and packed enough clothes for two weeks—including a black dress, just in case. On the plane, I vacillated between terrified that my mom’s life might be ending to furious that neither my father nor my mother had done anything about it until now. With an illness like this, I thought to myself, there were protocols to follow, signs to look for! Why had they been so careless? What would have happened if my brother and I hadn’t acted?

When I got to the hospital, my brothers were already there, grateful I had come to take over. The moment I saw and spoke to my mother I realized just how cognitively impaired she was from the pressure of the tumors on her brain. She had little idea why she was in the hospital, or why all three of her children had rushed to her bedside. I saw my father, too, now looking scared and helpless and old. He was clearly not prepared for this moment.

My parents had no power of attorney paperwork on file, no living will. My father was carrying his unfinished tax forms, due at the end of the week, in a manila envelope. Suddenly my fear and anger dissipated into action. I asked to see the MRIs and CT scans, introduced myself to the nurses, filled out forms, and got every piece of information I could from the various doctors assigned to her case.

Later, waiting in the large open surgery waiting room with so many other families, I was struck by how quotidian my mother’s illness was to the people who worked at this hospital every day. The surgeries, frightening as they were to us, were rather straightforward, and both went well. I spent the days during and after sleeping at my sister-in-law’s house, arriving at the hospital by eight in the morning, hours ahead of my father or brothers. My mother moved in and out of sleep and family moved in and out of her recovery room as I managed the number and the timing and the volume of her visitors.

After three or four days, I knew I needed a break. An idea for how I could get one without feeling guilty came to me. “Mom and Dad,” I said one afternoon, when things were quiet, “would you mind if I went and cleaned out your fridge and kitchen cabinets so everything is nice for you when you get home?”

I knew their refrigerator had a tendency to get over-full and chaotic in the best of times, and with my mom’s recent impairment it had to be quite a mess. Cleaning it was a thing I could do in a moment that was otherwise entirely out of my control, a corner of order I could impose on a frightening and entropic universe. The linen closet all over again, I realized, a task with steps and a way to measure completion and success.

“It would be nice to have things clean when I get home,” my mother smiled. “Thanks, honey.”

When I arrived at their home, the kitchen was in the state of disarray I imagined it would be. I took out the overfilled trash, then emptied the refrigerator, methodically, as if I were weeding a garden with care. I threw out a bottle of carrot juice with an inch of liquid at the bottom, on top of which had grown a mossy archipelago. There were open, crusted-over yogurts with the spoons still inside. A bag of pre-cooked hard-boiled eggs that had expired months before, sitting waist-deep in a cloudy bath. Multiple packages of expired cured fish. Cooked asparagus drooping over the side of a clear plastic cup. Bottles and bottles of half-drunk spring water.

Each container I threw away made me feel cleaner, lighter, rid of a burden I didn’t know I was carrying. I took down each and every bag and box and bottle from the cabinets, swept away loose Jordan almonds and the piles of sugar and salt that sat like sandbars at the bottom of each shelf. Once every surface was clean, I put the good items back, carefully: the spices with the spices, the crackers with the crackers, the candy with the candy. As I did so, I noticed two pieces of paper taped to the inside of a cabinet door.

Upon examination, they seemed to be printouts of a webpage. One featured a photo of an old brownstone; the other had a description: The local historical society was opening the historic Charles Gates Dawes House to the public for a limited time, only ten visitors at a time. I wasn’t familiar with the significance of the house, but the second paper explained all the details of the opening, the cost, the location. In the middle of the page, scrawled over the top of the text, was a note.

It looked like a child’s handwriting, which meant it was my mother’s, developed over years of working as an early childhood educator who needed her writing on papers and posters to be easy for kids to read. It was a loopy block script I knew well, every letter somehow vaguely resembling a heart. What it said was this: “Please can we go tomorrow. Please.”

The paper was already curled at the corners and a bit dirty, with little grease spots and crumb clusters dotting the perimeter. It must have been there for months. Had they gone when it opened, like my mother asked? If so, why were the papers still up on the cabinet door?

I didn’t know the answers, but I was filled with affection for both my father and my mother—she still writing him notes like a childhood crush; he leaving them up long after they’d served their purpose. Maybe they never went. Maybe he’d forgotten the papers were even there, the way you stop seeing the knickknacks on your coffee table once you’ve grown used to them.

It was the first time I’d fully considered that my parents now had a life together without us, and that they’d had one together before we were born, too. They had a collective rhythm I couldn’t hear, a shared language I didn’t understand, messes I couldn’t always be there to tidy, promises to each other that weren’t mine to keep.

I flushed suddenly and closed the cabinet door, as though I’d lingered too long on an old love letter. My task done, I took the newly accumulated trash out to the curb.

*

Once they determined my mother was well enough to be transferred to the therapeutic wing of the hospital, my brothers made plans to go back home to their families. My older brother took me to dinner the night before he left. “Thank you,” he said. I tried to shoo his gratitude away with a wave of my hand. “No, really, thank you,” he repeated. “You know I couldn’t have done it, right?”

I told him I did know, that I was happy to do it. That I was just glad it had turned out okay. After my brothers left, I stayed in town to oversee the transfer and continued to check on our mother, bringing her ice cream from her favorite ice cream shop, picking up new clean clothes for her to change into, checking in with the nurses on her progress and making sure they knew that any new information should be shared with me as well as my father.

On Thursday, my mom and I were sitting in her hospital room chatting about her physical therapy session that morning. “It’s Dina’s birthday this weekend, isn’t it?” she asked.

“That’s right. That’s good, Mom!” I said, smiling. “Before the surgery, you didn’t know what year it was.”

“You should go,” she said seriously, touching the top of my hand with hers. “I’m okay now. Your father is here.”

I knew she was right. And I wanted to be home for my child’s birthday.

Before I left, I had a long conversation with my dad. I helped him finish their taxes, signed them up for Mint so it would be easier for him to keep track of their finances, and gave him the link to the meal-sharing webpage I’d set up for them. “Everything should be all set,” I said. “But I’ll call to check in, of course.”

“We couldn’t have done this without you,” he said affectionately, squeezing my shoulder.

It felt strange to hear him say that, even though I knew it was true. Perhaps I didn’t like how it sounded like a compliment—praise for something I knew I couldn’t possibly have done any other way. Still, I knew what he meant, and I appreciated it.

My husband often reminds me that my intervention might have saved my mother’s life. But what I think about most, now, is my mother and my father living happily together still—he a little older, she a little slower—just the two of them, like always, moving in rhythm together.

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