The chaplain rubbed his forehead and let out a long exhale. “Are you okay?” He asked.
“Yes, I’m fine.”
“Well, before I left for lunch, I wrote a poem for Nicole. Do you have time to wait so I can print it out?”
“Sure,” I said. As he disappeared through the doors, Eunice turned to me and said. “You know, Nicole did this for you because she loves you so much. She couldn’t have you sitting through the ventilator being turned off and then have you wondering for the rest of your life whether you did the right thing. This was her gift to you.”
The chaplain returned and handed me a poem entitled, “When I Get up to Heaven.” Underneath the title was written, “for Nicole Stephan.” I thanked him and promised that I would read it in its entirety, which I did… and sometimes still do. The three of us, Eunice, Cynthia, and I, climbed into our individual cars, and pulled out of the lot single file.
As I followed them, one thought consumed me: It’s over. The rituals of the past 18 years are over. The uncontrollable diabetes, the endless barrage of insulin shots and finger sticks, the unpredictable heart, the lungs that don’t work, the constant nausea, vomiting, and diarrhea, the headaches, the food and fluid restrictions, the aching joints, the dialysis 3, 4, and 5 times a week, the medical tests, the surgeries, the bad veins and central lines, the appointments, they’re all over.
No more listening to my daughter cry through the night, no more dread of wondering if she’ll pull through yet again, no more ventilators, no more fear about her future, no more panic every time the phone rings. No more trying to make a good impression or walking a thin line in the hopes of being approved for a kidney. Relationships with doctors, dialysis centers, pharmacies, paratransit, medical supply companies, home health agencies, and hospitals, relationships we were in but didn’t want are all over.
As I rode, another thought struck me. I wondered if Nicole knew how much I really loved her. When she was little, we played a game. I would say, “I love you,” and she would ask, “How much do you love me?” And I would stretch my arms as wide as I could and puff out my cheeks and squeeze my eyes shut, and she would giggle and clap her hands; “Tell me again, Mommy, how much you love me.” As an adult, at those random moments, she would say, “Mommy, I love you.” Trying to make her laugh, I would mimic her little-girl voice and say, “How much do you love me?” Instantly her eyes would fill with tears.
By the time we made it back to my house, the funeral director had called and left a message. He said I should bring clothes for Nicole and plan to sit down with him to discuss the arrangements. I agreed to come the next day, which was Saturday. I packed an overnight bag, and Eunice and I left for the 45 minute drive to her house.
The next morning, we went back to my house. Sherry dropped by, and the three of us searched Nicole’s closet for an outfit to take to the funeral home. It was difficult to find something that would cover the scars on her body. All of her tops had low-cut necklines, and the surgical scar from her thoracic surgery rested on the center of her chest like a thin, brown snake.
Eunice, Sherry, and I made our way to the funeral home. As we sat around the fine wood conference table, I couldn’t help but wonder where in the funeral home Nicole’s body was at that very moment. Was she in a cold place, or was she lying in an open room? Was she covered up or exposed? Was she really even dead?
The funeral director opened a file and passed me a document. “I know we talked briefly over the phone, and you expressed your wishes for the arrangements. I’d like you to review the document and make sure everything is to your satisfaction.” Nicole and I had talked about death often and in great detail, but it had always been my death that we discussed and how she should handle the arrangements.
I’d told Nicole that the last thing she needed to worry about while dealing with my death, was trying to make elaborate arrangements: paying for a funeral location, paying someone to officiate, paying for expensive flowers, paying for an outfit, paying for the programs. “Death is a money maker,” I told her, “and there will always be those ready to capitalize on your grief.” My instructions to her were clear.
I don’t want a funeral, wake, or public viewing. A simple graveside service will suffice. No embalming, and the least expensive casket will do. After all, what good is a $5,000 casket? Once it’s lowered into the ground, sealed in a vault, and covered with dirt, it’s no different than any other box. Afterwards when you purchase a stone, it should be small and simple, no Bible opened to the 23rd Psalms, no praying hands, no angel with wings unfurled, no cherub with a wistful gaze, instead, a simple stone with my name and dates.
After listening to this, Nicole had insisted that she wanted the same thing when she died, but I wasn’t convinced.
A few years before, we were having dinner with Eunice and her family. As I fixed my plate, I asked Eunice, “Did you put maws[2] in this dish? Because you know I don’t like maws.”
“I did,” she said. “I forgot you don’t eat them.”
Nicole stopped eating and looked down at her plate. “Are there maws in mine?”
“What difference does it make?” I asked. “You’re on your second helping.”
“Because I don’t like maws.”
Eunice laughed. “Just because your mother doesn’t eat them is no reason for you not to like them.”
Doubting that she even knew what they were, I asked, “What are maws, Nicole?”
She took her index finger, put it on the rim of the plate, and slowly pushed it to the center of the table before answering, “I don’t know what they are, but I know I don’t like ‘em.”
Knowing that she often liked or disliked things simply because I liked or disliked them, I was a bit skeptical when she insisted on final arrangements like mine. But she insisted that, “for all the reasons you just gave, I want arrangements just like yours.” As such, I signed the document and gave it to the funeral director. As Nicole and I had discussed, there would be no funeral or public viewing. That Monday, we would have a graveside service, and she would be laid to rest.
When we arrived back at my house, the cemetery folks called and asked me if I had other children or if I was married. I didn’t understand why she was asking, but before I could even inquire, she said, “I hate to bring it up at a time like this, but if you don’t already have a plot and vault for yourself, you might consider purchasing a double plot with your daughter. You can get it at the same rate you paid for hers, but you can pay for yours over time, with no interest.” It sounded like a good plan, but I wasn’t sure if I was in the right frame of mind to make an on-the-spot decision. “Can I give you a call after I think about it?”
“Well, I need to know by tomorrow.”
“Why tomorrow?”
“Because that’s when we’ll open the ground for your daughter’s burial. If you buy a double, you’ll be buried on top of your daughter, so they’ll need to dig a little deeper to accommodate both vaults; we need to know before we start digging.”
I told her I’d call her back within the hour.
When I hung up the phone, I thought about how it would work out with my being buried on top. I can hear it now, Nicole tapping on the bottom of my casket asking me to come down there so she could show me something. And once she got me down there she’d say, “Since you’re here, you might as well spend the night.” And then one night would turn into five nights, and then she’d say, “You might as well just stay.”
I called the lady back and gave her the okay on the double plot even though I knew it would be a waste of money. After I die, the best option would be to simply open Nicole’s vault and drop me in with her. We all know that’s where I’ll end up anyway.
On January 14, a little before 2 p.m., we arrived at the cemetery. The cloudless sky was a pristine blue. Nicole’s white casket rested beneath a green canopy that was decorated with palm fronds. The wind was so gusty that at one point I thought the whole canopy would lift off the ground and blow away.
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We gathered and took our seats, 15 or 20 of us. My two friends Calvin Tibbs and Ricky Hunter would eulogize Nicole. Both had watched her grow up. Calvin spoke first; smiling as big as the day itself, he said the peace and culmination of joy that we all longed for, Nicole had finally attained, that we would miss her but that we shouldn’t be sad for her. Then Ricky spoke; his words brought me a sense of tranquility.
I’ve known this little girl for many years. I’ve watched her grow up. She’s beautiful, runway beautiful, a model. There’s one word that sums up who Nicole was. Nicole was a stalwart. When she did something, she gave it all she had. If it was the right decision or if it turned out to be the wrong decision, she put every bit of herself into it. She never did anything halfway.
Nicole had been sick for a very long time. We consider a person lucky if he dies and is revived, but Nicole died and came back not once, not twice, but three times or more on separate occasions. The doctors would say, “We don’t think she’s gonna pull through this time,” and again Nicole would pull through. But there comes a point when one discovers that what’s on the other side is far better than what’s on this side, and this last time when her heart stopped and she got a good look at what awaited her on the other side, Nicole said, “I’m not coming back this time.”
His final words, “I’m not coming back this time,” resonated with me because of a turn of events that, although they involved others, was seen as a whole only by me. I had prayed for Nicole endlessly. On previous occasions when she’d suffered cardiac arrest, I would stand in the hospital hallway praying, not that God’s will would be done, not even that Nicole’s will would be done, but that Nicole not be taken from me. Each time, she was given back. But this last time, with the situation much graver, I prayed a different kind of prayer.
I remember the day very well. It was the Thursday following Nicole’s collapse. I was driving home from the hospital to shower and change when I felt a familiar and undeniable invitation. Trying to explain what it feels like to be wooed by the Spirit of God, is like trying to explain the Grand Canyon at sunset. It defies language and is only fully fathomed when people experience it for themselves. The call is an irresistible one, and I had already begun praying as I turned into the driveway.
Barely inside, I lay on the floor stretched out before the presence of God. As I poured out my whole heart, there was intentionality in every word I spoke. I told God Nicole’s prognosis, and then I reminded Him of what He said: With faith, we could command insurmountable mountains, and they would crumble into the sea. Because I believe that with God the impossible is possible, Nicole’s simply waking up was not enough. Only a complete healing and restoration would do. Improbable I know, but faith doesn’t rely on odds or statistical data. God only requires that we have faith; the rest is up to Him. I knew that God’s ability to communicate with Nicole was not hampered by the coma, so, notwithstanding my own prayer, I wanted Nicole to know that the ball was entirely in her court; the decision had to be hers.
That same day, Calvin came to the hospital. I was feeling exceptionally well because of my prayer. Our visit was very pleasant and light-hearted as we stood at Nicole’s bed, one of us on each side. I told him about the events of the previous Friday when her heart had stopped as well as the prognosis that had been given. However, I didn’t share with him my prayer. To discuss it, I felt, would somehow diminish it.
Calvin said that on his way to the hospital, he had asked God what His will was in this matter so that he would know how to pray. “As I was walking into the hospital,” he said, “God told me what to say, so if you don’t mind, I’d like to talk to Nicole now.” He then turned to Nicole, grasped her hand and said, “Nicole, the doctors have said that you will not wake up, but the doctors are not God. God said that if you choose, you can wake up and continue this battle. He’ll be with you no matter what, but it has to be what you want.” I struggled to hold back tears as I listened to him repeat to Nicole exactly what I had said to God in prayer.
And as I sat at the graveside listening to Ricky’s words, the truth of the whole matter came full circle. I had asked God to honor Nicole’s desires in this matter; God in turn spoke this to Calvin who in turn spoke it to Nicole. For the first time, the ball was completely in Nicole’s court; she could either throw it back and continue the game or keep it and go home. She chose home, “and I’m not coming back this time.”
Chapter 6
The next day was overcast and cold. I lay in bed looking out the window at the bare trees when Eunice tapped on the door. She pushed it open and asked, “Are you awake?” I nodded without turning over to look at her. I didn’t want her to see my moist, swollen eyes. “I’m going in to work today. Will you be okay by yourself?” I wanted to say something, anything, but the pressure was building in my chest, climbing toward my throat. Opening my mouth would’ve been loud and messy.
Through 15 years of friendship, she’d learned how important it was for me to keep on my game face at all times, even for those with whom I was close. She didn’t press me; instead, she walked over, placed her hand on my shoulder and said, “I know you’re heavy this morning. Call me if you need me.” She walked out and quietly shut the door.
I showered and dressed and systematically went through the house looking out windows. Stark trees against a gray sky; brown, wet leaves packed into tight places; a smattering of small birds hopping about; the quiet road with an occasional car scooting along. I went outside and stood in the driveway. The ground was scattered with acorns and pine needles.
I thought about sweeping up or emptying and stacking the flower pots or hosing something down. I wondered why I was even there and thought I should go home and when Monday rolled around, I should go back to work. I thought maybe I should go to the cemetery to see what the grave looked like now that it was filled in. I wondered if Nicole was cold. I regretted having had her buried in a skirt. What was I thinking? It was January. She hated being cold, so I imagined her thin, bare legs wrapped in a heavy thermal blanket. I wondered if the casket lid was too close to her face. Like me, she was terribly claustrophobic. If the satin lining was touching her nose, she’d go bananas. I wondered about worms. It was too cold for worms; I wondered if there were worms in the flower pots. I went back inside.
There was nowhere for me to be, no hospital to run to, no dialysis center to go to, no prescriptions to call in, no doctors’ appointments or transportation to schedule. My cell phone rang; it was Calvin. He said I’d been in his thoughts all morning and he wanted to see if I needed anything. I didn’t. “Have you made peace with it, or is it still quite surreal?”
“Surreal.”
“And it will be for a while.”
“I’m okay, though.”
“Are you?”
“Yes.”
“Hmm. Two things I want you to remember. One, your only child is gone. I can’t even imagine the pain you’re feeling. But if you survive this, and you will, your heart will never break like this again. And two, don’t cheat the process. Don’t feel like you have to rush through this. Allow yourself the time you need to get through this properly.” We prayed.
Eunice called and asked how I was doing.
“I’m good.”
“Feeling a little better?”
“I believe so.”
“It’s gonna take time, Nancy.”
“I’m going home today.”
There was silence for a moment. “Why are you going home?”
“It’s time for me to go home and get on with it—and I’m going back to work Monday.”
“Well, only you can decide what’s best, but I think it’s a little too soon.”
“I’ll be fine.”
By that afternoon, I was home. It was my first time in the house alone. Nicole had gone into the hospital on December 6, and I had been in the house alone, but this was different. She was dead now, and everything looked and felt different. Even the silence sounded different.
I dropped my
overnight bag by the door and stood looking around trying to get a feel for the space. Her bedroom door was open, and from the hall I could see the clothes Eunice, Sherry, and I had left on the bed. I walked down the hall and into my room; I sat on the bed exactly where Nicole was sitting when it happened. I imagined I was her. I wondered what she saw, what she felt, what she was thinking the moment it happened.
I put the tea kettle on and drew a hot bath. As I lay there soaking, I thought about what I would do when I got out of the tub. Of course I would make a cup of tea, but that would only take two or three minutes, and what would I do while I was sipping the tea? Every moment I was consumed with what I was going to do the next moment because without something to do, I had nothing to do, and if I had nothing to do, I would start thinking.
That night I lay in bed staring at the ceiling. Unable to sleep, I threw the covers back, slid down to where she was sitting when it happened, and again I imagined that I was her. I let myself fall backwards onto the bed just as she had. I tried to imagine at what point she lost consciousness. I wondered if she knew I was running toward her, if she felt me pull her from the bed to the floor, or felt me pumping her chest, or heard me screaming her name or praying for God to help me. I wondered what her last moments of consciousness were like and if she had the presence of mind to know she wasn’t alone.
Nicole’s greatest fear was being alone. I learned this one afternoon when she asked me what my greatest fear was, “…and I don’t mean snakes,” she said. Everyone who knows me is well aware of my fear of snakes.
“I’m afraid of losing you,” I said.
“Why would you lose me?”
“I don’t know; it’s just a haunting fear that someday you might be gone.”
She snubbed the idea that I would ever be without her, and she often teased that, to the contrary, I’d never get rid of her. I followed by asking what she was afraid of. Because she often talked about her dread of having diabetic children, I was sure this would be her answer. Instead, without even pausing, she said, “I’m afraid of being alone.”
The Truth About Butterflies: A Memoir Page 4