The Truth About Butterflies: A Memoir

by Nancy Stephan

  We met on the telephone during a huge misunderstanding, and as such, I had decided, sight unseen, that I simply didn’t like her. A week later at work, I met a woman in the hallway. We struck up a conversation, and it was one of those occasions where you feel like you’ve known someone your entire life. As she continued talking, I realized she was the one from the phone call the previous week. My expression must’ve changed because at that moment she raised her eyebrow and said, “Didn’t know it was me, did you?” We laughed, and our paths have been hopelessly linked ever since. Aside from our not having the same parents, we are sisters in every sense of the word.

  The nurse finished with Nicole and told me that I could go in and see her, but before I could go, the social worker came and asked to have a word with me. We went to a more secluded area where she asked me about my wishes and if I’d signed a Do Not Resuscitate (DNR) order. I told her that I hadn’t. “Do you want to?” She asked. I tried to answer but couldn’t. “You don’t have to answer right now,” she said. Then she asked, “What is it you want for your daughter?”

  “I want her to be healed.”

  “You’re a Christian?”

  “Yes, and I believe in healing.”

  “I’m a Christian as well and also believe in healing. I’ll keep you and Nicole in my prayers, but have you made plans for the alternative in the event she’s not healed?”

  “No.”

  “Have you contacted a funeral home?”

  “No.”

  “Do you have one in mind?”

  “No.”

  “Tomorrow, I’ll bring a list of funeral directors in the area. You want to take care of this now so you won’t have to deal with it when the time comes.”

  I opened my mouth to say that Nicole’s time would come when she was old, and her children would make the arrangements for her just as she’ll make them for me because that’s the way it’s supposed to be. Though these words were in my head, they never found their way to my mouth.

  By four o’clock that afternoon, the horrors of the previous night had caught up with me. I was sleepy and exhausted and things were more surreal than ever. Nicole was settled in and connected to a small table-top ventilator. Her room was beautiful. The plantation shutters cast lovely shadows across the floor. White chair molding separated the moss- and butter-colored walls. The oak chest of drawers matched the floor, and the sunlight beaming through the two windows brought life to the quilt that hung from the wall. Absent was the frenzied, fast pace of the hospital—patients coding, nurses rushing, families praying, machines blaring, walls, windows, and floors looking on in solemn silence, and the smells of life and death and everything in between making their hourly rounds. It was nothing like that here, and I felt it was calm enough for me to go home for a while and get some sleep.

  As I fantasized about how wonderful it would be sinking into my cool pillows and sheets, the nurse came in. “The medical director will be here around six, and she wants to speak with you,” she said. Six o’clock was less than two hours away, and the hospice center was 45 minutes from my home. There was no way I could make it home, rest, and be back by six. I wondered what was so pressing that she had to meet with me so soon after our arrival. I was completely depleted, and for once I just wanted to be left alone. I wanted nothing more than to lock the door, climb into bed next to Nicole, and cradle her in my arms like I did when she was little. That alone would’ve been a little piece of heaven.

  The closer it came to six o’clock, the more anxious I grew at meeting the medical director. I wondered if somehow she had been contacted by the doctors from the hospital, if they told her not to put up with any of my crap about giving Nicole time to wake up, that I should be made to sign whatever papers needed to be signed to get this thing over and done with. The last thing I wanted was another doctor telling me that Nicole was in a hopeless situation and that I needed to let her go, how keeping her alive was selfish on my part and frustrating for everyone involved. If that’s what she was coming to tell me, then I would play a nasty trick on her.

  She would barge into the room in her white coat expecting to stand over me, her lips dripping with some greasy, under-cooked speech, but I would be long gone. Irritated by my disappearance, she would search for me, checking the bathroom and the closets, but I would be at home picturing her desperation from the comfort of my bed. Distraught, she’d be forced to save her lecture for another day.

  When the nurse came in to check on Nicole and me, I asked her about the doctor. “What kind of person is she?” The nurse looked confused. “What do you mean?” She asked.

  “Is she nice?”

  “Oh, she’s very nice. Let’s see… she’s probably in her 40s; she’s from Africa, very friendly, easy to talk to. I’m sure you’ll like her.”

  I thought to myself, I’m sure I won’t. I thought about leaving. What’s the worst that could happen? At best she’d have to wait until the next day to see me, which would’ve suited me just fine. Besides, by then I would’ve been well rested and better able to deal with her. While deciding whether to leave or stay, I once again fell victim to sleep.

  I was startled awake by the door opening and realized that the doctor had arrived. She came in, pulled up a chair directly in front of me, and sat down with her knees touching mine. She was casually dressed with no lab coat. “I’m Dr. Anedi Eme-Akwari.” She looked over at Nicole. “She’s a very pretty girl; you’re both very pretty.” I thanked her… and I waited. “I asked to meet with you tonight to answer any questions you might have and to find out what you expect from me.” Still a bit shaky from being awakened so suddenly, I couldn’t think of one single question, and I had no idea what I expected from her. “Let me ask you this,” she said. “What do you want for Nicole?” I wondered what kind of answer she was fishing for.

  It has been my experience that some physicians do not believe that faith and reality can coexist. Once a doctor says, “The reality is, your child is going to die,” and the parent says, “I believe God can do anything,” immediately it’s seen as nothing more than denial, an attempt to avoid reality. Speaking of God and faith during times of medical crisis is the acceptable, even admirable thing to do, but taking a stand on faith when medicine has declared a poor prognosis is seen simply as avoidance or a tool of procrastination.

  What is faith, though, if not exercised during times of impossibility? Even so, because medicine is rational and faith defies all rationality, conflict arises when the two face off. Denial most certainly exists for those facing a loss; it’s part of the natural process, but it has absolutely nothing to do with faith. When denial has run its course, faith, ideally, persists unscathed.

  For what it was worth, I was going to tell this doctor exactly what I wanted for my daughter. She could either take it or leave it. Either way, I had nothing to lose. “I want her to get better. I know what her prognosis is,” I said, “but even now I don’t think that her healing is beyond God’s jurisdiction.” I waited for her lecture, which would be filled with words like denial, realistic, and false hope. Instead, she reached for my hands. “My dear, I’m a born-again Christian, and I know God can do anything. If He wants to heal Nicole, He certainly can. I don’t know what He will do in this case, but in any event, you won’t go through this alone. I’m here to make sure you get through this with your faith intact.”

  If there was indeed a balm in Gilead, her words had been steeped in it, and for a moment I was speechless. For once, there was no concern over whether Nicole had adhered to her fluid restrictions, no undertones that she somehow deserved this, or that she was rebellious and angry and got what was coming to her. The only thing under consideration was that in all likelihood a daughter would be dead very soon, and a mother, who in 27 years had never been without her daughter, would have to learn how to keep living. That’s all that mattered. She explained a little more about what changes to expect in the coming days if, of course, God didn’t heal Nicole.

  I made it home by 9
p.m. As I lay in bed completely spent, I began to hatch a plan. Unbeknownst to this Nigerian doctor, she and I would join our faith and force God’s hand in this matter. We would march over to His place unannounced. She would take the front door, and I would take the back, and we would beat relentlessly. He would cover His head with His pillow, but our pounding would echo in His ears like a muffled heartbeat. He would turn on His music and blast the volume, but He would be unable to drown out our wailing. Finding no peace, He would acquiesce and come out to us. Having His full attention, I would speak first.

  I would explain that if He took away my only child, I would have nothing. My entire being would become hollow; my lungs would fill with dust, and I would be useless. Then the doctor would chime in. She would compel Him with impressive jargon and woo Him with her medical prowess. She’d tell Him how this miracle wouldn’t be lost on her because she was fully aware of the improbability of it all.

  While she spoke, I would render my own soliloquy so that there would never be a moment when our cries were not ringing out. We would continue back and forth, nothing short of a filibuster, until He threw His hands in the air and said, “For their own sakes, give them what they want, and send them away.” It never occurred to me that Nicole might be nestled inside bathed in bliss with no intentions of ever coming back to this place. At some point during my strategic planning, I fell fast asleep and slept soundly until morning.

  Chapter 3

  The next day, Nicole’s breathing was noticeably worse. Even with the assistance of the ventilator, her shoulders shrugged slightly with every breath. Her face was becoming puffy; it had been five days since her last dialysis. I asked Dr. Akwari how long Nicole could survive without dialysis. She caressed the back of Nicole’s bony hand and said, “Even though she’s not eating or drinking, her body is still producing toxins that are not being removed.” I remembered the hospital dietician explaining it to me once.

  When the body doesn’t have food, it begins metabolizing its own muscle, and the byproduct of muscle breakdown is potassium. “If your kidneys work, you just pee out the extra potassium,” the dietician had said, “but if not, the potassium builds up in the blood and can be very dangerous to the heart.”

  I’d had the conversation with the dietician because the month leading up to December 6, the day Nicole’s heart stopped, Nicole had been in and out of the hospital with cardiac complications due to high potassium. The doctors believed she was intentionally eating high-potassium foods with no regard to her health. I insisted that she wasn’t because I had rid the kitchen of potassium-rich foods, and I was the only one buying groceries. Nicole was hardly eating anything anyway and was spending most of her time in bed. “Then how come when she’s in the hospital a few days, her potassium comes down?” The nurse practitioner Reba had asked. I couldn’t give her an answer because I had no clue why it was happening. This seemed to further validate her claim that Nicole was doing it intentionally. I guess it was possible that when I left for work each morning, Nicole would throw back the covers, call her friends over, and have an all-out potassium party, but it was highly unlikely.

  The situation had bothered me, so when the dietician came by to see Nicole, I asked her why Nicole’s potassium would be high at home, but stabilize once she was in the hospital. “What does she eat at home?”

  “Hardly anything. I’m lucky if I can get her to eat some crackers.”

  The dietician thumbed through Nicole’s chart. “It looks like she’s at least eating a little bit while she’s here in the hospital.” She turned to Nicole. “You’re not eating at home?”

  “No, when I eat my stomach cramps really bad.”

  “It doesn’t cramp when you eat here?”

  “Yeah, but I get dilaudid in my IV, so even though my stomach hurts I can tolerate it.”

  “Well, that would explain it,” the dietician said. “If she’s taking in nutrition here at the hospital, her body is no longer metabolizing its own muscle. How long has she been not eating?” I told her that it had been a gradual process.

  The previous January, the endocrinologist had diagnosed Nicole with gastroparesis, a complication of diabetes that makes digestion difficult and painful. Nicole’s last attempt at a meal had been Thanksgiving. From November 22 until December 6, she had refused almost all food. Her thin, tall frame was nothing more than a skeleton with a layer of flesh. Regardless of what the doctors believed, I knew that Nicole wasn’t eating potassium by the fistful.

  As Dr. Akwari explained that the toxins would continue to strain Nicole’s respiratory system, I knew that Nicole’s struggling to breathe was not a threshold I was willing to cross. When Nicole and I had talked about either of us being in this situation, she had said, “Mommy, I don’t know if I could let you go. How would I know when to do it?” We’d had this conversation as Terri Schiavo’s[1] case unfolded in the media.

  Like we had on so many occasions, we sat in the car in the driveway after coming in from dialysis. At dusk, rabbits would come from their burrow, and we’d count the pairs of ears we’d see bouncing through the tall meadow grass that grew in abundance along the edge of the property. We’d sit and talk, sometimes for hours, on different subjects, each of us raising the philosophical bar for the other. But that particular spring night, we talked about Terri, who had passed a few months earlier, and we talked about letting go.

  I was unable to give Nicole a definitive answer on when to let go. But I do believe there’s a place on the brink of suffering where all of one’s emotions gather like great philosophers. They reason amongst themselves on the best course of action. But it is only when love stands up and decides when and where the line must be drawn that all of the other emotions fall silent in agreement because they know that love is never wrong. It’s in that moment of pure love that decisions and actions become clear.

  “I don’t think you’ll know until the moment comes,” I told her, “but when it does come, you’ll know for sure.”

  Nicole always trusted me to make the right decisions, but it was her own words that would help me when the time came. “Ma, don’t let me go until you’re satisfied in your own heart that I won’t wake up. Don’t listen to the doctors either; they’ve been trying to kill me since I was little.” From the time she was nine years old and first given an insulin needle, Nicole believed that doctors had it in for her. I asked the nurse when Dr. Akwari would be coming. “She’ll be in later this evening, six or seven-ish. Would you like to see her?” I nodded.

  The social worker came and gave me a list of funeral homes. There were over 40 of them on the list. Only one was familiar; it was a funeral home about a mile from my home. I called the number, and the funeral director said he’d fax over a list of services. When I got the list, I went down it with a pencil, very much like I would a grocery list, placing a check mark by the services I would need.

  Early that evening, Eunice’s niece Tye, her husband Jay, and their two girls came for a visit. We laughed and talked and alternated between watching TV and watching the children play. I wanted to scream and beat the walls, but instead I smiled and asked Jay for the recipe to his steamed asparagus he’d fixed at Christmas. Wanting to play hardball, he said an outright gift of the recipe was impossible, but he’d be willing to barter for my cranberry cobbler recipe. I looked him up and down. “My cobbler is easier to make than you think.”

  “So is my asparagus,” he shot back.

  We narrowed our eyes, glared at each other, sneered a little. No recipes were swapped that night, but I would’ve given him my recipe on a silver platter if it meant that Nicole would wake up. We both knew that cobbler and asparagus had nothing to do with our Nicole, but we used the mock standoff as a temporary release from the stifling reality that hovered over us.

  During our visit Dr. Akwari came in, and I asked to speak with her out in the atrium. Tye insisted that the doctor and I stay in the room while they waited in the atrium, but my not wanting to talk in the room had nothing to do with t
hem and everything to do with Nicole. I would try not to, but I knew I would cry when I started talking to the doctor. I didn’t want Nicole to hear my crying or sense my anguish. It would serve only to make things more difficult for her.

  She had often told me that she feared for me when I was home alone. “What if someone breaks in, and I’m not there to protect you?” She’d asked. On the many occasions that she was hospitalized, she would call me at odd hours of the night to see if I was okay. “Did you lock the back door? Keep my baseball bat near your bed.”

  Regardless of her need to feel like my guardian, Nicole always trusted me to make the right decisions no matter how difficult the situation, and so I sat down with Dr. Akwari and made the decision because, as Nicole had admonished, I was satisfied in my own heart, without any external pressure, that the time was right.

  I’m sure Dr. Akwari knew why I wanted to talk to her. Even so, she didn’t bring it up or even suggest it. She just sat quietly, held my hand, and listened as I choked out the words. “I think you’ve made the right decision,” she said. “Please don’t second guess yourself. Just think of it: no more diabetes, no more shots, no more kidney disease, no more dialysis, no more suffering. It will simply be goodnight, and then heaven. It will be so beautiful.” The tone of her voice, mellowed further by her British accent, made it impossible for me to feel anything but peace. So the decision was made; at four o’clock the next afternoon, we would remove Nicole from the ventilator.

  As my guests prepared to leave, I walked them out. Tye stayed behind for a moment. I knew she was whispering something sweet into Nicole’s ear, caressing her cheek, telling her that all was well and that her mother would be taken care of. We all gathered out in the parking lot. It was dark and cold and had begun to rain. It would’ve been a good time for me to cry, but I feared that somehow they would discern between the teardrops and the raindrops on my cheeks. Maybe they would question my strength, my ability to square my shoulders and face this storm head on. I had been a no-nonsense handler of all things difficult my entire life. It was important for me to keep up that appearance no matter how hard my insides were buckling.