“It’s not time that she’s being punished with; the boot camp experience is what the judge wants her to have,” he said.
So she waited over six months before they had a bed for her at the camp. In the meantime, they’d been sending her out to see a nephrologist for her renal failure. The day before she was scheduled to have renal stents put in, they shipped her out to boot camp. “Don’t worry,” she said. “At least now we know I’ll be home in 90 days.”
The boot camp was a couple hours away, and I was told I could bring Nicole some personal items: sundries, underclothes, some books, etc…. When I brought the items, they told me I could have a short visit, but the actual visitation would start a few days later.
When I arrived a few days later and signed in at the front window, the receptionist asked me to step over to another area and wait for the supervisor. I thought that maybe I’d placed an unapproved item in the care package, but when the supervisor arrived, she said, “Miss Stephan, your daughter has a lot of serious health issues, and we’re not equipped to handle that level of care; unfortunately, we’ve refused to accept her into our program. I’m sorry.”
“So do I just take her home?”
“She’s already gone. We notified them that we couldn’t accept her because of her health.”
“So should I just go back to the jail and wait for her there?”
“You should probably wait for Nicole to call you.”
As I walked back to the car, I thought what a waste it was that she had spent six months in jail to do a 90-day program that eventually refused to take her. I drove the two hours home and waited for Nicole to call.
Later that night, the phone rang and startled me out of a deep sleep. Before the operator connected us, I’d already concluded that Nicole was back at the jail, and she was calling to tell me when to pick her up the next day. But when the call was patched through, Nicole, whimpering on the other end, said, “Mommy, I’m in prison.”
I sat straight up in bed, “What do you mean you’re in prison?” Barely able to talk through the tears, she said, “They told me the prison had a full medical facility, so I have to do my time here.” I couldn’t believe that was true. Surely they can’t just take someone to prison. There’s a process; a person must be sentenced to prison, but she was insistent, and though I didn’t want to, I believed her.
Hearing Nicole cry was gut wrenching. Because she was a high-maintenance child, I’d always held her feet to the fire. As such, she was tough and had no problem paying the piper. I’d never known her to cry over anything. I tried to soothe her; I told her I’d get to the bottom of it first thing in the morning. I was up for the rest of the night.
The next morning I called the probation officer; he wasn’t available, so I spoke to someone else. “I was told that she was sentenced to boot camp for the experience and not for the time,” I told the person on the other end. “So if she’s too sick for boot camp, why was she taken to a prison to sit for 90 days when she’s already been in jail for six months?”
“If it wasn’t for parents like you,” the person said, “always trying to get their kid off the hook, the prisons wouldn’t be so full.”
I spent the better part of the morning calling different people who only passed me on to other people. When Nicole called, much to my relief, she’d made a complete turn around. “I’m okay, Ma. I don’t want you stressing over this.” Knowing that she was no longer crying was a huge burden off my shoulders. “I’m gonna go to the law library and see what I can do,” she said. I told her that I’d been making calls all morning but getting nowhere. “If they’re giving you the run around, just stop calling. I’ll do what I can do from in here.” My old Nicole was back. She’d found her footing and had pulled herself together.
Not making any headway with the probation office, I remembered that a friend of mine once worked for the prison; I gave him a call. “I can’t do anything to get her out, but while she’s in there, you won’t have to worry about anything,” he said. When I went for the first visitation, they couldn’t find Nicole in the system. “We don’t have an inmate by that name,” they assured me, but after looking through the computer and making calls, one of the officers said, “Oh, she’s here for medical.”
“Does that mean she’s separate from the other prisoners?” I asked.
“No, it just means she’s listed differently because she’s not one of our inmates.”
After that initial check-in, everything went smoothly. However, it was quite different from visiting Nicole at the jail, where I’d enter the building, go through a metal detector, and walk down the hall for my visit. Instead, I walked through a detector, was patted down, walked through a court yard, and passed through two tall electrified fences crowned with curly rows of shiny barbed wire. Visitation was held in the gymnasium. Visitors would stand against the wall until their loved ones came into the gym and sat down; the visitors would then join them.
Nicole was in good spirits. She insisted that I not worry because she was writing up some kind of appeal. I told her I would let her handle it even though I continued to call the probation officer and anyone else who would listen. My friend had told me not to worry about anything, but I was surprised that the guards made a point to tell me that Nicole was in good hands, one telling me to “Think of us guards as guardian angels.”
On my next visit, Nicole told me that the supervisor himself had come to check on her and that someone had placed so much money on her books that she could purchase whatever she wanted from commissary. “And the inmates are so nice to me; everyone looks out for me. My cell mates wake me up during the night to make sure my sugar hasn’t dropped.”
Nicole took in all the stories of these women who rallied around her and told her she should thank God for this experience because “not many get to see what prison life is really like without actually being sentenced to do time here.”
“This is it for me, Ma,” she said. “When I get out of here, you’re gonna see a whole new me.” Neither of us knew what was waiting around the corner.
Time passed quickly. Nicole continued to work on her appeal, and I continued to make calls. Even though we both knew by then that our efforts were futile, the process kept us busy. Two weeks before she was to be released, I arrived for my visit. Altogether, she’d been incarcerated for nearly a year, and we were in the final countdown.
As I stood along the wall waiting for her to come in, the other inmates and their visitors, whom I had gotten to know, were staring at me in a most noticeable way, almost as if I were on stage. When Nicole finally came in, I couldn’t believe my eyes. Her left arm was bandaged and in a sling, there were bandages on her chest, and her face was swollen. As I rushed to get to her, she was reaching out to me with her good arm. “Look what they did to me, Mommy.”
“Who beat you up like this?” I asked. With her head resting on my shoulder, she said, “No one beat me up, Mommy. I’m on dialysis now.”
I didn’t know where to begin. How could she have had surgery and been placed on dialysis without my being notified? Nicole lifted her bandaged arm. “They rewired my veins and arteries to make a ‘fish’[10] for dialysis. Then they put this tube in my neck, and they’re gonna use it for dialysis until my ‘fish’ heals. Mommy, Tell them I don’t want the dialysis.”
By then, one of the guards was walking toward us, and as Nicole was crying and we were both visibly upset, I thought she was coming to tell us to quiet down. Instead, she told Nicole, “They’re ready for you.”
“Ready for me for what?”
“For your dialysis.”
“I don’t want it.”
“C’mon now baby girl, you need to get your dialysis so you don’t get sick.”
“I don’t need it; tell her, Mommy.”
“Nicole,” I said, holding back my own tears, “It’s okay; go ahead and do your dialysis. You’ll be home in two weeks, and if it turns out that you don’t need it, then you can stop.”
“But
what’s gonna happen to me when they drain all the blood from my body?”
And I realized she had no clue what dialysis was or how it worked.
“It’s not like that,” the guard said. “You just lay back and read a book or take a nap. Ain’t nothing to it; you’ll see.”
And so Nicole wrapped her good arm around my neck and kissed me. Then she followed the guard to her first dialysis session.
When I reached the parking lot, the reality of it settled over me, and I wept. She had gone through this with limited, if any, education and no support. Instead, she’d been taken to the hospital, in the company of a guard, with her wrists shackled to her waist.
Even so, I had very little time for grieving. Nicole was coming home on dialysis, and I had no idea how or where to begin with getting her set up; I had less than two weeks to figure it out. I called Eunice, and she helped me get the preparations underway.
The day of Nicole’s release, I was euphoric. I arrived at the prison after having picked up a bouquet of flowers. I had the day planned out, and I was ready to have my daughter home again. But when I arrived, they told me that Nicole was no longer at the prison. “She wasn’t our inmate to begin with,” the officer told me. “She was just here for medical. We sent her back to the boot camp; you’ll have to pick her up there.”
I made the two-hour trip to the camp where I waited another three hours for her to be released. I watched as she walked down a narrow, fenced corridor where a guard looked over her release papers and then unlocked the gate to let her out. She got in the car, and we embraced. As I held her close, I was aware of the central line catheter resting beneath her shirt. I was also aware of Dialysis, who had climbed into the backseat and tightened its seatbelt for the ride. “I can’t believe I’m finally free,” Nicole said as we pulled out onto the country road. But our silent backseat passenger would make it his business to ensure that Nicole would never really be free again.
Chapter 18
Dialysis was my daughter’s enemy, and, therefore, my enemy. I know Dialysis is a savior to many, which puts me in a precarious position. How can I put the screws to it like I want to when so many people depend on it?
I could talk about the first time I saw it done, how it reminded me of embalming or how the clinic always smelled like vinegar, as if people were in a back room coloring Easter eggs. I could explain that Dialysis is like a giant wizard that’s controlled by people working the ropes and pulleys. And to help you really envision what it was like for Nicole, I could ask you to imagine yourself sick in the emergency room; the nurse says to you, “You’ve come to the right place,” but then she finds out it’s your kidneys, and she says, “Oh, kidneys are a different part of medicine all together. You’ll want to get back in your car, and take a left out of the parking lot; then keep south until the sun disappears and the clouds begin to gather.”
I could also explain that Nicole was provided with manuals on what not to eat, what not to drink, and what not to do, but she was never given a single pamphlet on how to cope with the fear. I could tell you about the summer of 2006, but you wouldn’t believe me.
As funny as it might sound, I could tell you about the imaginary cue cards the kidney doctors carried in the breast pocket of their lab coats:
If the mother says: Nicole is always thirsty.
Your response: Your daughter drinks too much.
Rationale: The mother will think you’re talking about the same thing, even though you’re not. *Remember: the daughter doesn’t drink water because she’s thirsty; she drinks it because we’ve told her not to.
If the mother says: I’m telling you, Nicole does take her medicine.
Your response: How do you know? Are you with her 24 hours a day?
Rationale: Self-explanatory
If the mother says: What this doctor has reported to you is not true.
Your response: What reason does he have to lie? He doesn’t know you or your daughter.
Rationale: Our perspective is the reality, and it’s the only one that matters.
If the mother says: Nicole is tired, I’m tired, and I don’t know how much more of this we can take.
Your response: Say nothing. Keep a poker face, and look down at your watch every 15 seconds.
Rationale: She’ll take the hint. Besides, the girl’s situation is ultimately the mother’s problem; don’t let her make this our problem.
If the mother says: Nicole hates dialysis.
Your response: If your daughter doesn’t like what’s happening to her, she can go see a psychiatrist.
Rationale: All the other patients are happy to be here, so obviously she’s the problem.
If the mother says: If I can just give you some context, maybe you’ll understand why this is so hard for her.
Your response: Nicole needs to do what she’s told.
Rationale: We don’t have time for this.
If the mother says: I’m sorry Nicole refused the procedure, please give her another chance.
Your response: The mother is desperate, she has no bargaining power, so you can pretty much do and say whatever you want.
Rationale: We’re the doctors, dammit!
Rule of Thumb: Whatever the mother says, always disagree!
I could talk about the day I received the letter from the transplant clinic two months after Nicole’s death, and the panic I felt in realizing I’d forgotten to tell them she was gone. I could explain my horror to find that the letter was not an approval for the transplant as I’d expected, but a rejection.
If I thought you wouldn’t judge me, I’d tell you what I considered doing to my own flesh after reading that letter and the shock and embarrassment I felt that such a thing had so effortlessly entered my mind.
I could also mention that with the arrival of this rejection letter, I began hating the doctors and how they had colonized every corner of our lives for two solid years, but now that everything was decimated, and shattered, and hanging off the hinges, they’d simply returned to their own pleasant countries, leaving me here alone to sift through the rubble.
If I had the stomach for it, I could tell you that after I read that letter, I immediately envisioned Nicole lying in her casket; her skin dark and dry; her face, swollen, the backs of her bony hands—which were folded in front of her—riddled with needle marks. I could describe the scab from the oxygen sensor staring up from the middle of her forehead like the eye of a Cyclops, or how the tape that had held the tube in her throat for over a month had left rope-like burns up each cheek, like she’d been slashed across the face with a whip. I could mention the lady at the funeral home who asked, “Was your daughter in an accident?” And how I wanted to say, “Yes, you could call it that.”
I could say all these things, but you might think I’m just bitter because my daughter is dead or that the grief has made me unreasonable. So instead, I’ll just say that Dialysis was an enemy my daughter didn’t want to fight and that those who worked the ropes and pulleys failed to give her the support all good fighters of this sort need, and that I myself am guiltiest of all because every time she was pummeled and lay bleeding on the ground, I insisted that she get up and keep fighting, and every time she cried and said, “Ma, I can’t do this,” I insisted that she could, that we could-together, and that she should keep fighting because it would all pay off in the end. But to reach "the end" and discover that there had never been a cavalry coming to save us, that those two horrid years had been for nothing, and that if Nicole weren’t already dead, this rejection letter would’ve killed her, was too much for me to bear.
I would like to tell you, though, that some of those who worked the ropes and pulleys did so with one hand so that they could hold Nicole and me close with the other. I can tell you that they went above and beyond what was required of them to make sure we didn’t get caught up in the machinery.
If I had the time, I’d tell you about the nurse, the same age as Nicole, who spent every lunch break at Nicole’s bedside, or the d
octor who said, “Nicole’s afraid, and she has every right to be. But I’m not going anywhere; when she’s ready, I’ll be here.” I could tell you about the dietician who gave me her daughter’s phone number so Nicole could have someone to talk to. I can tell you about the nurse from the dentist’s office who up and called me at work because “Nicole is on my mind, and I just wanted to see how she’s doing,” or the dentist himself who said, “Here’s my home number; give me a call if she gets into trouble during the night.” And I haven’t even mentioned the doctors and caregivers who, once this was all over, decided to stay on this journey with me and have become my friends and confidants. And it’s for all of these selfless, loving individuals that Dialysis should thank its lucky stars.
After a year of fighting Dialysis, Nicole took a blow from which she’d never recover. On September 14, she was admitted to the Coronary Care Unit (CCU) with chest pain and shortness of breath. She was diagnosed with pulmonary hypertension and stayed in the CCU for a month. “We’ve done tests to see what’s causing this,” the pulmonologist said, “but they’re turning up nothing. We’d like to send her to a specialist at the research hospital.”
They transferred Nicole to the research hospital on October 11, and the admitting physician there said that the next day, they would move her out of ICU to the regular unit so that the specialist could begin his evaluation.
The next day, October 12, I left work early and went to the ICU just as Nicole was finishing lunch. They moved her to a regular room, and within minutes of taking a shower, she collapsed on the floor.
I was sitting in a chair behind her as she brushed her hair. She had been off the oxygen for about 45 minutes and seemed to be doing okay. Just as she put the final pin in her hair, she turned to me and said, “You might not want to sit behind me. I’m getting ready to give the gift that keeps on giving.” I giggled, and just as I did, she stumbled a little as if she were losing her balance.
The Truth About Butterflies: A Memoir Page 13