The Truth About Butterflies: A Memoir

by Nancy Stephan

When Nicole was diagnosed with kidney problems, Erma Lee insisted that I be vigilant in keeping an eye on the doctors and their treatments. This subtle suggestion that the doctors couldn’t be trusted was not lost on Nicole.

  Initially, when the prednisone wasn’t working, the doctor increased the dosage to 60 mg a day. Nicole’s face grew as big and round as a dinner plate. Also around this time, she’d begun volunteering at a nursing home doing hair and nails for the women.

  One afternoon when I went to pick her up, she was surrounded by three or four women whose nails she’d just done. One of the women said, “I was just tellin’ this chile to be careful of the medicine those doctors try to give her ‘cause sometimes you think they makin’ you well and instead they puttin’ diseases in you… and what kind of medicine they got her on that got her swelled up like this?” When I explained what was going on with Nicole’s kidneys, the woman said, “But Nicole said the medicine ain’t doin’ her no good.”

  “Well,” I said, “so far she’s not responding to the treatment.”

  “Then you go and get her pulled off that stuff; it’s killin’ her.”

  And as she talked, I wondered how I was going to undo the damage of her well-meaning words. I knew I couldn’t let Nicole volunteer there any longer. As we were leaving, one of the women said, “And get her a Black doctor; at least that way you know they ain’t usin’ the chile for tesses.”[9]

  It wasn’t long before the kidney doctor stopped the prednisone. Besides not helping her kidneys, the prednisone wreaked havoc on her diabetes. The doctor told Nicole that the shape of her face would soon return to normal. “And what about these?” Nicole asked, pointing to the deep purple stretch marks that had developed around her hips, under her arms, down her thighs, and behind her knees. “It’s called steroid-induced striae,” she explained to Nicole, “and it doesn’t go away.” Nicole was devastated, and it gave her one more reason to add a tick mark to her score sheet.

  Nicole was diagnosed with nephrotic syndrome and placed on blood pressure medication. Her kidney function remained at 60 percent until she was in her early twenties, but when she developed an extremely severe case of double pneumonia, the doctors were startled to find that her kidneys were functioning at less than 30 percent, and they told us we should start thinking about a transplant.

  Chapter 16

  From the time she was diagnosed with nephrotic syndrome to the time she was diagnosed with renal failure, Nicole was busy being a teenager. And like many parents, I often wanted to run through the streets screaming and flailing my arms like my hair was on fire. We were saved by one over-arching fact: we had an incredible relationship, and there was never a time when we were not friends.

  Ours was a relationship of cycles. She would travel down the road of life and often lose her way. If she saw a sign that said Keep Out, she’d usually go in. If there was a sign that said Road Closed, that’s the road she’d take. If there was a sign that said No Swimming, like her grandmother before her, that’s exactly where she’d spread her blanket. And on those occasions when she’d stray from her path, I was devoted to helping her find her way back to the road.

  I worked very hard at creating a balance of openness and respect. I wanted her to be comfortable enough to talk to me about absolutely anything but not forget that I was her mother and that there were certain lines she shouldn’t cross. This was especially important to me because we were so close in age. One thing I learned early on is that if you say to a child, “Ask me anything; I won’t get mad,” you’d better be prepared to follow through on your promise.

  I was driving when Nicole asked me a question that sucked the oxygen from my lungs. She had been sitting quietly, looking out the window, when she turned and asked, “Mommy, can a girl get pregnant from doing oral sex?” She was 11 years old. I didn’t know whether to rip my eardrums out or open the car door and throw myself out on the pavement. “No,” I said very casually. “It’s impossible.” And I waited for her to continue the conversation, which she did. “I knew that girl was lying.”

  “What girl?” I asked.

  “This girl in our class told me and Tasha that her sister was pregnant, but that she was still a virgin because she got pregnant from doing oral sex. We knew she was lying because she lies about everything.”

  After my lung function resumed, we continued talking about “doing oral sex” until we’d said all we needed to say about the subject. I knew that if she could ask me a question like that as casually as if she were asking what we were having for dinner, I was doing something right.

  I told Nicole that I, too, had been slightly confused by how sex and pregnancy were connected. To her amusement, I told her that when I was in 7th grade, it never occurred to me that something actually came out of the penis that would make a girl pregnant; I thought the penis itself was the culprit. In fact, I thought anything at all entering the vagina would make a girl pregnant. So in gym class during swim week, when my friend asked why I wasn’t getting in the water, I said, “Because I’m on.”

  “Why don’t you wear a tampon?”

  “I’m not on the pill.”

  “What does the pill have to do with anything?”

  “Because I don’t want to get pregnant.”

  There was a long silence as she tried to connect the two apparently unrelated events.

  “I don’t get it,” she said.

  Since I was rather book smart and she was the class clown, I explained pregnancy to her in the simplest way I knew how: “You can’t just stick stuff up there if you’re not on the pill; you’ll get pregnant.”

  I was sitting on the side of the pool with my legs in the water, and she was in the pool with her arms folded over the edge. “Oh… my… god!” She gasped, and with a look of delight, she pushed herself away from the edge and swam over to the rest of the girls. Within seconds, the entire pool erupted in laughter.

  Nicole, shaking her head in disbelief, said, “Ma, even I know there has to be a guy involved for a girl to get pregnant.”

  This is the kind of openness we shared. Likewise, I knew if I asked her a question, she was going to give me the unadulterated, uncut answer. So I knew not to ask unless I really wanted to know.

  Having an open line of communication, however, didn’t erase the fact that Nicole was a teenager. She did typical teen things, but she did them in atypical ways. She continued, even then, to jump off things.

  She was 14, and I’d told her she couldn’t go out with her friends who had come by to collect her. Upset, she went to her room and closed the door. A couple of hours later when she didn’t surface for dinner, I went to her room but she was gone. The window was wide open, and because our apartment was on the second floor with no ledge, no trees, or anything that would break her fall, I was hesitant to look. It’s finally happened, I thought as I walked to the window. She’s lying down there with a “broke neck.” But when I looked, there was no sign of her.

  I went outside and walked around the building to the grassy slope beneath the window. An elderly man sitting on his patio asked, “You lookin’ for that tall gal what come out that window?”

  I was embarrassed, but I nodded, “Yes sir.”

  “Gone,” he said, and with sheer delight he detailed the event. “She couldn’t decide how she was gon’ do it at first, backwards or forwards. She sat for a spell thinkin’ on it, legs danglin’ out the window. Her two little gal friends was eggin’ her on. She finally come out forwards. Shwoop! Down she come. Then she dusted herself off, and the three of ‘em took off yonder way.”

  And as he laughed, probably tickled at hearing himself tell the story, he said, “Don’t whip her, hear?”

  Even though I often threatened to take Nicole to Funky Town, physical punishment was something I did very little of. Talking worked better; it produced better results, but I must admit that sometimes talking wasn’t enough. And there was one incident that Nicole would share with anyone who’d listen. It was the day, as she claimed, “My mot
her tried to decapitate me.”

  Every time she told the story, she did so with renewed passion. First she’d wave everyone to quiet down, and when she had their full attention, it was show time.

  I came in from school one day, and my mother was in the kitchen. Soon as I walked in, she started fussin’ about something; I can’t remember what. (Which was a lie; she knew exactly what I was fussing about).

  So I go in the kitchen and listen to her yap—blah, blah, blah. I thought she was done, so I turned to walk away. (Another lie, because I said to her “Don’t walk away from me when I’m talking to you.”) As I’m walking through the living room, something spoke to me—and I know it was the Holy Ghost—it said, “Nicole… turn around.”

  I turned around, and all I saw was the pointy end of the ironing board coming straight for my face. (Mind you, this is the same ironing board that I’d been telling Nicole to put away for the past three days. So when she walked away while I was still talking, the ironing board was like a gift from the Savior.)

  I don’t know how I moved so fast, but I ducked just in time. The board sailed past me and went through the patio screen. When I stood up and turned to look at her, she was standing in front of me with the broom, which she held to my throat, and then she pinned me to the wall with it. And y’all know I’m taller than she is, so she had me up under my jaw. I couldn’t get away, and I couldn’t breathe.

  When the laughing stopped, someone would always ask, “Nicole, what did you do that made your mother so angry?” And she’d say, “It doesn’t matter! The woman tried to kill me.” And since she never could “remember” exactly what she’d done, it was left up to me to explain how she’d run the phone bill up to nearly $1000.

  I wish I could say that I gave Nicole a time out that day, or that I had a civil, mature chat with her. Instead, it happened just like she said, and it’s probably the closest I’ve ever gotten to actually taking her to Funky Town.

  But then Nicole grew up. Overnight, it seemed, she’d gone from a lanky beanpole of a girl to a tall, statuesque goddess. When Nicole walked into a room, people stared at her. Even though she was over six feet tall, she always wore heels. She was thin and olive-skinned, with silky hair, hazel-green eyes, very high cheek bones, and a face full of freckles. She was a lot to take in.

  Most people would break the ice with one of two questions: “Where’d you get all them freckles?” And without skipping a beat, she’d say, “Wal-Mart.” If they didn’t ask about her freckles, they’d ask, “Do you play basketball?” Nicole didn’t like being asked that question. “There are two kinds of tall,” she’d say, “basketball tall and model tall. So what is it about this fabulous body that makes people think I run up and down a basketball court?”

  Because of the cut and angle of her eyes, some people would ask if someone in the family was Asian. Older Black people would simply say, “That chile’s got a little Cherokee in her.” And because there’s absolutely nothing exotic about me, people would look at her, then look at me, and then look back at her, and I could see them desperately trying to put it all together. Nicole loved every minute of it. She was beautiful, she knew she was beautiful, and she expected the world to sit up and take notice.

  Along with her beauty, Nicole was a deeply spiritual person. Because it was a struggle for her to stay on track, she was overwhelmed by God’s redeeming power and His grace. Where some might ask, “If God is so great, then why does He allow bad things to happen to me?” Nicole would ask, “If God is so great, then why does He put up with me? How can He still love me when I can’t seem to do anything right?” It’s true that she did some things wrong, but she also did some things right, and when she did things right, she did them very right.

  When Nicole was around four years old, we had gone to a function in a local park. As we walked among the crowd, she said, “Mommy, I wanna go home.”

  “Why?” I asked. “We just got here.”

  “Because my skin feels wiggly.”

  Even though she didn’t have the vocabulary to express that something was not quite right about the environment, I knew exactly what she was talking about. We left, and as we were driving away, I asked her if she felt better. She said, “Yes,” that her skin wasn’t wiggly anymore.

  Though seldom, this happened again a few times through the years. Whenever she would say, “Let’s go; something here is not right,” I wouldn’t ask questions or hang around to investigate. But shortly after her 21st birthday during a trip to the mall, I did hang around after she’d said, “Let’s go,” and I was sorry I did.

  We went to this particular mall usually twice a month. We’d window shop for a while, and then stop by the food court for lunch. As usual, we entered the mall through Rich’s department store, and as we walked through the store and into the mall, Nicole began to fall back a bit. Then she said, “Ma, I’ve changed my mind; let’s go,” and she turned around and headed back toward Rich’s.

  I’d already reached the leather goods store and was admiring a pair of $400 boots when I became acutely aware that someone was behind me. I turned around and found myself nose to nose with a conjure woman, for lack of a better term. There was an un-good presence about her.

  The woman began chanting, and I was startled, for the most part, because she was standing so close to me that we were almost touching. Before I could respond to her, however, Nicole was standing next to me. She pointed and said to the woman, “Go!” And immediately the woman stopped chanting and walked away.

  Nicole grabbed my hand and started walking. She was good and upset, so I had a hard time keeping up with her long strides. Before we made it out of Rich’s and to the parking lot, she abruptly stopped walking and said, “When I said, ‘Let’s go,’ why didn’t you follow me? And what was she saying to you?”

  “She wasn’t saying anything,” I said. She was mumbling.”

  “What did she give you?”

  “Nothing.” By then I was getting agitated with the mother-child role reversal, but when I held out my hands to prove that the woman hadn’t given me anything, I was holding a card on which were printed some kind of symbols. I was speechless. I hadn’t remembered the woman giving me the card, but it was in my hand, so, obviously, she had.

  “Drop it!” Nicole said, and I dropped it right on the floor. We resumed our walk with Nicole fussing under her breath, but when we reached the stillness of outdoors, I realized that she wasn’t fussing at all but repeating, “No weapon formed against us shall prosper.”

  People who know us knew that I prayed for Nicole, but they probably didn’t know that she also prayed for me. They know I am a soldier, but they likely had no clue that Nicole was a warrior. And as strong and capable as I knew she was, I didn’t know that the day was coming when she would lose confidence not only in her weapons, but also in her ability to fight.

  Chapter 17

  Once it was quite clear that Nicole needed a transplant, I immediately spoke with my own doctor and told her I wanted to be tested. “There’s no way,” she said. “Even if you’re a match, your hypertension will keep you from being considered.”

  Nicole’s aunt volunteered to be tested. Nicole’s paternal grandmother had already gotten a kidney from one of her daughters, and now another of her daughters was willing to be tested for Nicole. Somehow, Nicole will get a kidney, and life will go on. This is what I thought.

  During the time we first began talking about the transplant, Nicole had moved out, but her mail was still coming to the house. When a letter arrived bearing a court stamp, I called her. “Don’t be upset, Ma, but I’m on probation.” She asked me to open the letter and tell her what it said.

  The letter detailed the conditions of her probation, which included paying probation fees, restitution, and routine visits with a probation officer. Her offences included: following too closely, driving without proof of insurance, and damage to public property. Nicole explained the details of the car accident that led to her probation and the events that prec
eded it. “That’s not all, Mommy.” And I felt the angst gathering in my ribcage as I braced myself for what she might tell me. “Moe had this good idea to make some quick money… turned out not to be such a good idea after all. I’m on probation for that, too.”

  We had a long talk, similar to the many long talks we had when she’d gotten off course. “I’m not in a good place right now, Ma, and I want to come back home.” She moved back in, and I was happy to have her home so I could do for her what I did best, shore up her foundation and get her back on track.

  One afternoon when I arrived home from work, the front door was unlocked, and Nicole wasn’t home. Within the hour, she called and told me that she’d been arrested for probation violation. “I was in my room sketching when they knocked on the door,” she said.

  As she was talking, I went into her room and saw her large sketch pad and sketching pencils scattered on the bed. Interested in fashion design, she’d recently gone to one of the art universities for an open house. “How did you violate your probation?” I asked.

  “Missed my last two appointments… behind on my fees.”

  She said she’d call me the next day after she went to court, which she did, telling me that the judge had ordered alternative incarceration.

  “What does that mean?”

  “Boot camp. I have to go for 90 days.”

  “When do you go?”

  “I’m on a waiting list. I have to wait ‘til a bed comes available.”

  “How long will that take?”

  “Who knows!”

  Nicole’s attorney requested that she be sent home on a monitor because firstly, she had been charged with probation violation and not with committing a new offence and secondly because she had kidney problems, high blood pressure, and was an insulin-dependent diabetic. The wait for boot camp, he said, was too long. The request was denied.

  After waiting for over four months to do her 90 days in boot camp, Nicole asked me to contact her probation officer. I called the PO and told him, “Nicole was sentenced to 90 days in boot camp, but she’s been waiting for four months just to go.”