The Truth About Butterflies: A Memoir

by Nancy Stephan

  “Something’s wrong, Mommy,” she said. I could see that she was going to fall, so I stood behind her. Then she shrieked, “Mommy, something’s wrong.” She was gasping and trying to scream, but she couldn’t catch her breath. I had grabbed her under her arms and eased her to the floor. Her back was against my legs. I reached over her head and pulled the emergency cord just inside the bathroom door. When I turned, I saw that her eyes were rolled back in her head, the catheter that was in her neck was out and lying on the floor, and blood was pouring from her neck.

  I eased Nicole to the floor and ran into the hallway screaming for help. The nurse came out of an adjacent room and said, “What’s wrong?” I couldn’t answer; I just pointed down to the room. She ran into the room, and within seconds came out into the hallway and yelled, “Call a code!”

  Instantly after the code was called, swarms of people descended on the room. They were running, rolling equipment, they were on phones; they were talking to each other and over each other. The ICU nurse who had brought Nicole to the room less than an hour before was looking confused. I did the only thing I knew to do; I began to pray.

  I could hear the doctors requesting reports, lab values, recent tests, questioning the nurse. I felt an arm around my shoulder. I opened my eyes, and two chaplains introduced themselves. One asked me if I wanted to go sit in the family room. I told her that I didn’t, that I needed to hear and see what was happening. The very thought of being shuttled off to an empty room where I would wait for the doctors to come deliver the news gave me a cold, morbid feeling. “It’s quite alright for you to stay here,” she said. And someone brought me a chair and some water.

  Soon security officers came, and between them and the chaplains, they comforted me. They held my hand, rubbed my shoulder, and the chaplain prayed with me. “Is there someone I can call for you?” The chaplain asked. There was Eunice, but I didn’t want them to call her. Her sister Vivian was battling cancer, and that was enough to deal with. My friend Bridgett, who worked at the hospital, had just left about an hour before. She was seven months pregnant and certainly didn’t need the stress. “Surely there’s someone we can call,” she persisted, “just someone who can come sit with you?” I gave them Eunice’s number.

  Soon, the people in the hallway began to clear the way, and I saw the stretcher being rolled out of the room. There was a tube in Nicole’s mouth hooked to an air bag. She was covered toe to neck with white sheets. At a very rapid pace, they whisked her away, people followed in a horde, and the once chaotic scene became very quiet. “There’s a special waiting area right outside of her ICU room where you can wait,” the chaplain said. But I wanted to get her things out of the room first. The chaplain said she’d wait for me at the nurse’s station.

  In the room, all of the furniture had been pushed to one side; the floor and baseboards were covered with blood. Two nurses hurried in and told me to go with the chaplain and that they would gather Nicole’s things, but I wanted to gather her things myself. Nicole’s house slippers were splattered with blood, and I told the nurse that I didn’t want them. She dropped them in the trash.

  Then I noticed a towel on the floor completely saturated with blood. I was startled by how much of Nicole’s blood was in the towel. For some reason, I wanted to keep it. It was too much of my daughter to simply throw in the trash. I picked up the towel, and the nurse reached for it, but I pulled it back. She looked at me in a strange way and said, Honey, you don’t want that.” But I did want it. “Will it be thrown away?” I asked her.

  “We’ll take care of it properly,” she said.

  I insisted that I needed the towel, and the more I explained, the more disturbing it began to sound, even to me. She held open a plastic bag and told me to drop in the towel, but I couldn’t. She reached for the towel and tried to pull it from my hand. When I wouldn’t let go, she grabbed my wrist and began shaking it until I let it go. She turned to the other nurse and said, “Take her out of here.”

  I apologized and told her that I didn’t know what had come over me or why I wanted the towel, but she was no longer speaking to me, only to the other nurse, “Get her out of here.”

  When I made my way to the ICU, I was able to sit in a little cadre just outside her room. It was like her own little back porch. I could hear the buzz and whir of the ventilator and the doctors and nurses inside talking. Soon, one of the doctors came out and asked me to explain what happened. “Are you sure the catheter in her neck didn’t come out before she fell?” He asked.

  “I’m positive. The catheter was in her neck when she started to fall. It must’ve gotten pulled out when I tried to catch her.”

  “That doesn’t explain why her heart stopped, and none of the tests are giving us clues. She didn’t have a heart attack; her lab work is okay; she didn’t have a stroke; we’re just at a loss. However, if the catheter somehow came out and caused an air embolism, that would explain everything.”

  Then other doctors came, one by one, asking me to explain what had happened in the room. Each doctor said it was crucial for them to know if the catheter came out before or after she went down. Then each of them reminded me that if the catheter came out before she went down, it would explain everything.

  I relived the moment over and over, and I knew the catheter was still in place when she began to fall. One of the doctors was the head of cardiology, and he asked, “Did she say anything before it happened?”

  I was embarrassed to repeat what she’d said, so I told him that what she’d said didn’t mean anything.

  “You don’t know that,” he said. “What’s not relevant to you might be very relevant to us.”

  After a pause, I told the doctor about the gift.

  He threw his head back in laughter and said, “I love this kid already.”

  The doctor decided that just in case the catheter had come out and caused an air embolism, he wanted to send Nicole to the hospital downtown for treatment in the hyperbaric chamber. “It can’t hurt,” he said, “and it might help.”

  So on October 13, Nicole was transferred downtown for the hyperbaric chamber. I was so afraid that she would wake up while she was in the chamber that I asked the nurse, “If there’s an emergency, how quickly can you open this thing?” Nicole was claustrophobic, but I think it was my own claustrophobia that was bothering me. The nurse assured me that the propofol drip she was receiving would keep her soundly asleep.

  After the treatment, which lasted several hours, Nicole was moved to the ICU. It was well after midnight on the 14th, and I hadn’t slept or been home since the 12th. The family room was empty, so I turned off the light, used my sweater for a pillow, and curled up on the floor.

  Shortly after I’d drifted off, I was awakened by someone calling my name. When I opened my eyes, the lights were on, and all I could see were shoes. I rolled over onto my back and looked up to find myself surrounded by doctors. It was like I’d opened my eyes at my own funeral. “Miss Stephan?” I sat up. “Your daughter has suffered another cardiac arrest.”

  The chaplain helped me to my feet. I felt that if I stood up it might reverse what the doctor had just said. “She’s stable now,” he said, “but we can’t explain why this is happening, and we now know it has nothing to do with the central catheter coming out.” They told me I could go in and sit with Nicole if I wished, and I did. As sleepy as I was, I couldn’t close my eyes. I pulled up a chair next to her bed and stared and the cardiac monitor, almost afraid to blink.

  The next morning, the room filled with doctors, and one of them said, “We’re concerned about her brain function. She’s had two arrests, and we don’t know if she’s suffered a brain injury or to what extent. In a day or two, we’ll take her off the propofol and begin weaning her off the ventilator. You should be prepared for anything.”

  On October 18, she came off the ventilator successfully, but she couldn’t talk, she had difficulty swallowing, she couldn’t stand or grip anything in her hands. She recognized me but could un
derstand only very basic commands. I was devastated. “She’s very young,” the doctor said. “Her brain is agile. There’s no reason to believe she won’t improve with therapy.” So they moved her from ICU to a regular room.

  After a few days of therapy, she could stand momentarily with the help of a walker. She still couldn’t walk. She was swallowing well; her speech had improved, but by all other accounts she was like a three-year-old.

  One afternoon as she was sitting in the bed waiting for dialysis, her movement caught my eye. I looked over, and saw she was feeding herself lunch. She placed a napkin across her chest, cut up her meat, and buttered her bread. She ate, drank from her cup until it was empty, and then reclined fully content. I watched, while over a span of 15 minutes, she’d fed herself an imaginary meal. There was nothing in front of her: no plate, no food, no silverware, no cup, and no napkin. My heart sank.

  After nearly 10 days of therapy, Nicole was walking without the walker. However, her legs were weak, and she’d often fall. Her mental capacity had improved to such an extent that she was able to speak and understand fairly well. October 27, she was released from the hospital.

  Chapter 19

  Even though Nicole was talking and could hold a conversation when she was released from the hospital, it didn’t take long to realize that something was wrong. When the physical therapist came to the house for her initial visit, Nicole told her that she was 23 years old. “Nicole,” I said, “you’ll be 26 in December.”

  “Ma, I think I know how old I am.”

  And the more I tried to convince her, the more upset she got. On another occasion, she told me she’d taken a trip to Chicago just the week before. When I told her she hadn’t been to Chicago in years, she tore her room apart trying to find the ticket stub. And then there were the people who’d passed away that she thought were still alive. Because she seemed perfectly normal aside from these chunks of missing memory, it was very disturbing when, during the course of a typical conversation, I had to explain to her that the person she was talking about was dead.

  Having spent time at the research hospital, which is where the transplant clinic is located, I decided to switch to one of their kidney doctors. Doing so would place all of Nicole’s care under one roof, so to speak. Generally, Nicole took public transportation to dialysis, and then I’d arrive from work halfway through her treatment. We’d watch TV, she’d eat her snack, but mostly we’d talk. When I switched doctors, the new doctor told me Nicole would have to switch to a dialysis clinic she worked at. I had no idea that the rules would be so different.

  On her first day at the new clinic, I took the day off work and had planned to stay with her during her treatment. But when they called her back, the technician said to me, “You can’t come back here.” I assumed she’d meant I couldn’t go back until the needles were in, but she told me I couldn’t come in at all.

  “Ever?” I asked.

  “No,” she said growing irritated by my insistence.

  It was two o’clock, so I said to Nicole, “Around four, I’ll bring you something to eat.”

  “She can’t have anything to eat during her treatment,” the tech said.

  “I was only going to bring her a snack.”

  “Ma’am, she can’t eat on the machine, period.”

  Nicole, who had been standing quietly, waved me away. “Just go, Ma. I’ll see you at seven,” and she disappeared into the treatment area with the tech.

  Before we moved to the clinic, I’d met with the administrator, but by the time Nicole started, he was no longer working there, so I didn’t know a single employee at this clinic. That, along with being excluded from her treatment, made me very uncomfortable. Because I could visit with her at her previous center, except when the needles were going in or coming out, and because she could have a snack at some point during her four hours on the machine, I knew at this new clinic, where all of these things were forbidden, that we were on thin ice from the start.

  Shortly after starting at the new clinic, Nicole started asking to come off the machine before her treatments were over. “If they can take me off before my treatment is done, why can’t I?” She asked.

  “When did they take you off early?”

  “Just the other day, they gave me a paper to sign saying I was coming off the machine against the doctor’s advice, and then they disconnected me.”

  I blamed this ridiculous story on Nicole’s damaged memory, but the next time we were at the clinic, I asked if this had happened. I was told that if patients arrive late, it’s the same as saying they don’t want their full treatment, so they’re taken down before the treatment is complete. This was absurd to me, but more importantly, Nicole hadn’t been late. On one occasion that she’d been taken down early, we had been upstairs in a meeting with the doctor. “But other than that,” I told the nurse, “Nicole has never been late. We live 30 miles away, and I always get her here by two o’clock.”

  “Her appointment is at two, which means she needs to be here by 1:30,” the nurse said. If she’s not on the machine by two, she’s late.”

  It was the first I’d heard that she needed to be there at 1:30.

  On one occasion, Nicole got off the machine to use the bathroom, and then decided to order a pizza. When the pizza came, she sat in the lobby and ate it. This might not sound like a big deal, but it’s very much like asking a pilot to land a 747, so you can grab a sandwich. She was reprimanded.

  Some months later, she placed another pizza order. This time she wasn’t on the machine. I’d started getting her to the clinic much earlier to make certain she wasn’t late, so she’d ordered the pizza while she was waiting. It really didn’t matter whether she was eating during her treatment or before her treatment. What mattered was that she was eating after they’d told her not to. So the doctor told me to come and get her, I should take her to the hospital to dialyze, and that she should find somewhere else to go.

  The very week that this happened, Nicole and I had been sitting in a coffee shop when an old acquaintance walked in. She came over and said hello to both of us, and then began catching me up on the goings on in her life. Almost as an after thought she asked, “How’s Nicole?” Immediately, Nicole’s eyes swelled with tears. At the horror of her mistake, our friend apologized profusely. But there was no way to unsay what was painfully obvious: Nicole had become unrecognizable.

  Whatever flicker of light Nicole possessed, it was extinguished that day in the coffee shop. And as she sat with the sunlight streaming in, and I took a good, long look at how her skin had darkened, how all of her hair had come out, and how her clavicles were showing through her emaciated flesh, I wondered how we were ever going to get back to how we were before.

  So when the doctor told me to come and pick up Nicole, and I pulled in and saw Nicole slouching in the doorway, I knew that we were never going to get back to where we were before, and regardless of what I told myself every single day, there was no cavalry coming to save us.

  Chapter 20

  December 5, we signed Christmas cards. It’s the last thing we did together the night before it happened. Weeks prior, Nicole had been in and out of the hospital with high potassium levels and cardiac complications. But she was home, and our Christmas cards, which were usually in the mail the day after Thanksgiving, could finally be sent.

  I signed first and then passed them on to her. I noticed that she was signing so closely to my name that our signatures partially overlapped. “Don’t sign so close to my name,” I said. But if I’d known that Death had sneaked into the house, was hiding under the bed, and would spring out and make its move the very next morning, I would’ve kept my mouth shut.

  I fixed dinner, but again she’d refused to eat. What started over a year before as severe stomach pain after a few bites of food had evolved into a complete loss of appetite. After we signed the cards, Nicole took a shower and asked, “Do you mind if I sleep with you tonight?” Her wanting to sleep with me wasn’t unusual. She said that
since she’d been sick, everything was worst at night; pain, nausea, fear, loneliness, all of it intensified at night when, as she said, “the world goes to sleep and leaves me to face this by myself.”

  She was up and down most of the night, and every time she climbed out of bed, she climbed over me. Frustrated, I asked, “Can’t you get out on your side and walk around?”

  “No,” she said. “It takes too long.” So every time she got up, I was awakened by a knee in the groin or a hand in my throat. I watched as her tall, slender silhouette disappeared into the darkness of the hallway.

  I woke up at about 4 a.m. with my head flat on the bed. Nicole had taken all the pillows and created for herself a nest. Pillows cradled her head, arms, and the left side of her back. I was thankful that she was finally sleeping soundly. At 5:30, Nicole’s moaning woke me. “What is it,” I asked.

  “My muscles are aching.”

  I turned over and rubbed her back and shoulders until she drifted off again. At 6:30, as I got up and dressed for work, Nicole sprang up suddenly and said, “I can’t breathe.” I ran for the concentrator to make sure the tubing hadn’t become kinked or disconnected. Once she was sitting up for a moment, though, her breathing recovered. It was her dialysis day, and I asked her if she felt well enough to go by Para transit, which picked her up right in front of the house, or if she felt that I should take her. “I can make it myself.”

  As I prepared to leave, I told Nicole that I’d call her at nine to make sure she was up and ready for the bus. As I left the house, a substantial heaviness settled over me. It seemed that even my tongue became heavy. I pulled into the driveway and went back in the house.

  Nicole was still sitting on the side of the bed grimacing in pain. I sat next to her on the bed and tried to think of why she could be feeling so terrible. I decided that since she had given up eating but was still taking the medication that lowered her potassium, her potassium level might’ve been too low. “Get dressed,” I said. “We’re going to breakfast.”