When my daughter got cancer, I began hoarding ketchup packets and digital thermometers.
Gillian was 11 when we learned the lingering knee pain was osteosarcoma in her right femur. The treatment protocol for this rare bone disease was a nine-month course of aggressive chemotherapy. Each of the almost-weekly infusions required at least a three-night hospital stay.
My husband, Kyle, and I took turns sleeping by her side. Her 13-year-old sister, Allison, gave up time with friends to have dinner with her. Sharing a room with another patient’s family meant twice as many late-night awakenings and no privacy.
Gillian was the model patient. She endured painful blisters on her feet, and when she had to throw up she made sure to use a bin so nurses wouldn’t have to change her sheets. She entertained herself with books, origami paper and sketchpads. This wasn’t surprising. Even as a toddler, she had designed independent projects so I could build my life coaching practice. Once while I worked, she manufactured a pair of spectacles from Kleenex and water.
But, when I crawled into her hospital bed to snuggle and kiss her good night, she regularly sobbed quietly in my arms. As much as I tried, I couldn’t stop my tears from trickling down my cheeks onto her soft bald head.
I had been raised not to complain, but to “always give thanks” and cherish the little we had. My parents were Korean immigrants, a Presbyterian minister and a teacher. If I couldn’t finish dinner, my father would tap his chopsticks against the edge of the table to a slow timed beat.
“Every few seconds, a child dies of hunger,” he would say.
Feeling guilty, I cleaned my plate.
Perhaps this is why I had taken up an obsession with hospital waste. For each overnight stay, we received two brand-new digital thermometers, a stethoscope, a pulse-ox finger band and a blood pressure arm band. Watching the maintenance staff clean half of the room after each of Gillian’s roommates was discharged, I saw these and more go into the garbage — even new items with packaging untouched.
I asked one of the head nurses, “Why not reuse unopened items?”
“Once supplies leave the ‘clean room’ they can’t go back.”
When Gillian was too nauseated to touch any food, I tried to stop the kitchen aide from tossing items on her tray. I suggested she return the sealed milk, yogurt and Jell-O.
“I can’t. I’ll get into trouble!”
The wastefulness irked me. Ignoring advice I often gave my clients — to go easy on oneself in times of stress — I took up the fight to conserve. I started taking things home.
As soon as I arrived at the hospital, I swapped the pair of new thermometers with saved used ones. When my shift was over, I took home cartons of milk and packets of condiments.
I was embarrassed that I was becoming my parents. They couldn’t waste any scraps because of haunting memories of hunger during the Korean War. To hide the evidence, I squeezed out 18 packets of Italian dressing into a jar. I made rice pudding with the milk. I gave away hand sanitizer. I hid grape jelly packets in a brown bag in the back corner of the crisper drawer.
I knew that what I was doing was probably a reaction to stress, but was I turning into a hoarder? I later asked Dr. Carolyn Rodriguez, the director of the Stanford Hoarding Disorders Research Program. She said, “Not all collecting behavior is a hoarding disorder.” While she couldn’t diagnose me over the phone, she explained that those suffering from the psychiatric condition usually have “difficulty parting with possessions and clutter that impairs living in their homes.”
Meanwhile, friends complimented me on how well we were managing. But I knew otherwise, even though the accumulation was not in plain view. I might not have been doing the kind of hoarding that creates a fire hazard, but it clearly wasn’t healthy.
Then one night near the end of Gillian’s treatment, my daughters broke into their most explosive fight.
“Do you know how hard it is to be YOUR sister?” Allison asked. “No one cares about me. People only talk to me to ask about you!”
“At least you can go to school,” retorted Gillian. “You don’t have to worry about sepsis.”
“Shh, c’mon girls. Settle down. You’re disturbing our neighbors,” I pleaded, conscious of how sound traveled in our apartment building.
Growing up, my brother and I had never had heated arguments in front of our parents. As “Pastor’s Kids,” we had to be exemplary. My dad enforced this with his weekly opportunity to shame us for our misdemeanors in his sermons.
My kids ignored me. Their rage transformed them into creatures I couldn’t recognize. Gillian screamed curse words I didn’t know she knew. Allison stood over her frail sister to intimidate her. This stance reminded me of the one she had taken years ago when she chased down a boy on the ice rink until he fell. Hovering over him, she berated him for calling Gillian a “weirdo.”
“I’m sick of people bossing me around, ‘Take care of your sister,’ ‘Be good to your Mom and Dad!’ They don’t see how I go to that smelly hospital carrying all your heavy books,” said Allison.
“It’s a good thing you don’t have cancer. You’d never survive,” Gillian said.
I begged them to stop, looking to Kyle for help. That’s when I saw how calm he was. Having lost his father at 11, he was raised by his gentle Japanese-American mother. I could see her peaceful face as he simply listened to our daughters’ fight.
From his reaction, I realized that our girls were not attacking each other. They were taking turns expressing their pain, jealousy and anxiety. He was creating a safe place to air their grievances.
I saw my powerlessness in new light. Even if I could shut down the fight, I couldn’t stop how they felt. I had no choice but to allow the medical machine to aggressively treat Gillian. The medicines intended to heal were so toxic that nurses wore protective gloves to administer them. They made our baby sick, which hurt us to watch.
Unable to save my family from the horrors of cancer, I had been rescuing Band-Aids and apple sauce from the trash. But instead of hoarding as an attempt to exert some control, I needed to experience my feelings.
Three months after the chemotherapy ended, Gillian got her first scan. When her oncologist informed us it was clean, I cried with relief. I couldn’t stop so the doctor held me. In the cab home, I began to sob again. This time, Gillian took my hand.
When we got home, I retrieved 13 untouched bottles of leftover medicine stowed away in my closet. Mixing the pills into coffee grounds, I buried them deep in the trash. I peeled off every label bearing Gillian’s name and tossed the plastic containers into the recycling bin.
“We don’t need you anymore,” I whispered aloud, then cried some more.
Stacy S. Kim is a social scientist turned life coach at LifeJunctions.com.
