Wild and Precious Life

by Deborah Ziegler

  All I said was “Lay on your back, sweetie. I’m going to do your head and face.” I helped her straighten the IV lines again, made sure they weren’t tugging, and dabbed her cheeks dry with a corner of the sheet.

  “Momma, please help me. Brain cancer isn’t like other cancers. The glioma on my MRI is going to become a glioblastoma. That’s the most malignant, fast-growing tumor. My brain will turn to mush. My eyes will bulge out of their sockets.”

  The image of my child’s eyes, the window to her soul, protruding from her sockets from so much intracranial pressure, was hellish. My stomach churned. Rubbing her temples, I remembered what I’d read about the brain becoming softer and darker.

  God in heaven, help me . . . help us.

  “I promise,” I whispered. “I promise I will help you, darling.”

  A vivid image of hell flashed into my mind. Every sermon I’d listened to in Texas had a little bit of hell built into it. My minister had taught me that hell was as real as any other geographical location; that Jesus (who I grew up loving) believed in hell and routinely sent people there; and that people I had known were now in hell. There was an unquenchable fire in hell. People in hell were eternally thirsty, everlastingly tortured by flames, their mouths stretched wide in agony while horned winged creatures tormented them day and night.

  As I gently smoothed my daughter’s forehead, I prayed for a miracle. Please God, heal the brain that is beneath my fingers. Only you can help us now.

  Brittany gazed up at me, locking eyes. “Promise me. I need to know that you will help me die, that you won’t let this tumor slowly torture me.”

  I looked down at her precious, worried face and promised again. “I will not let this tumor torture you. I will do whatever I need to do.” As I said those words, I realized that I would have to keep this promise, no matter what. I’d break the law, I’d take her to another country. I’d do whatever I had to do.

  The terrible thing was, at that moment I didn’t know how I could help her. I just knew that I wanted her to stop talking about dying. I wanted her to sleep. I wanted to sleep. I wanted to wake up and find out that this had all been a bad dream.

  “Go to sleep, darling. I’m right here at your side.” I stroked her face and returned to my folding chair. Still praying for a miracle, I pushed thoughts of hell away. But that night I dreamed that Brittany and I were there. We couldn’t walk; we could only crawl through the flames as we tried to escape from horned creatures that pierced our skin with their three-pronged pitchforks as Brittany screamed out to me.

  I awakened when a nurse whispered in my ear, “I’m so sorry to have to ask you to do this at this hour, but we need to move you to another room.”

  “What time is it?” I sat up, disoriented. I looked over at my daughter. “Brittany, are you all right?”

  Before Britt could answer, the nurse said, “Oh yes, she’s fine. We’ll get her a gurney. I just thought you might like to start gathering your things.” She handed me some plastic bags with handles.

  So this was the abrupt end of the sacred brain injury protocol that we’d been following for days. Brittany was rolled into the brightly lit hall. I stumbled behind her, carrying our belongings as we traveled through a portion of the hospital that seemed to be under construction, with empty rooms and furniture in the halls as if they were readying for a thrift sale.

  Finally, Brittany was wheeled into an odd-shaped corner room where we heard a loud television next door. This wing seemed crowded, and all the doors were open. There were no drapes on the windows. It was as though the hospital had washed its hands of us. We were now in a noisy area of the hospital with minimal nursing staff—a far cry from the ICU. Rest was impossible.

  For the next twelve hours, Brittany talked almost nonstop in ever-tightening circles. The main gist of the circle was: Life sucked; life had been particularly unfair to her, to us; she’d worked hard all her life to be a healthy and good person; there was no God, because no God would let this happen; the universe was just a gaping maw of darkness and death; she knew deep in her soul that she was dying; she knew that the death would be a torturous process of loss upon loss; she loved me, but she needed me to help her get to Oregon; she deserved a peaceful death; she had done nothing to deserve the death that her brain tumor had in store for her; no one was going to stop her from seeking asylum in Oregon; she was afraid that she would lose the ability to speak and she would be stuck in her body; she would lose the right to advocate for herself; would I please be her advocate if that happened; knowing the way she would die was hell. What did we do to be given this hell?

  I tried to pray with her or talk to her about hope, to encourage her to listen to the meditation tapes, but this only infuriated her and precipitated another full circle. All I could do was promise that I would support her. I said that I understood, but in reality I didn’t. I said that I would do whatever she needed me to do, but deep down, I didn’t know if I could. I said whatever I thought might make her stop fretting.

  Aunt Sarah was already researching the death with dignity law in Oregon, finding out what Brittany needed to do to qualify. She was the right person to call. Her husband had had a bad heart all his life, and he and Sarah had talked about this very subject. She said that yes, she could do the research without losing her mind. My brother-in-law, Charles, was a smart and thoughtful man, and he had gone there in his head. This thought comforted me the tiniest bit.

  Hours ticked by. Dan and Gary joined us after breakfast. I was reading out loud to Britt a book that she had been given for Christmas. The title was David and Goliath, and I loved Malcolm Gladwell’s lean writing and provocative ideas. It was perfect for Britt, an inspiring book about looking at obstacles and disadvantages in a completely different way. “I’m David,” Brittany said when I paused. “The tumor is my Goliath.”

  Twelve hours after we’d been transferred out of the ICU, a nurse finally came to remove Brittany’s IV lines. I rode with Britt in the critical care transport unit to UCSF, a trip that was made more miserable by getting caught in rush-hour traffic. I’d specifically told the critical care ambulance nurse that my daughter had just been taken off of all intravenous meds and a saline drip and was urinating frequently, and yet there was no bedpan for Britt to use.

  When we got stuck in traffic, the nurse and I told Britt it was all right to just wet herself, and we’d clean her up at the hospital.

  Brittany answered, “Nothing is all right. I am fully aware that life will never be ‘all right’ again.”

  7

  Sweet Pea

  1990—1994, Ages Six to Ten

  What would it be like to feel so attached, so intrinsically bonded, so protective of one’s own best connection with time and the ages, of generations past and future, of another human life, of their time?

  —J. R. Tompkins, Price of the Child

  One day when I picked up six-year-old Brittany after work, Cheryl, her warm and loving sitter, handed Britt her backpack and reminded her that she had homework.

  “Oh no,” Brittany complained, her face collapsing from joy to complete dejection.

  “Well, you want to grow up smart and get a good job like your mommy, don’t you?” Cheryl said.

  “I never want to be like my momma,” Brittany answered. “I want to be like you and stay home with my children.”

  Pangs of regret, guilt, and sadness braided together, twisting at my heart, but I quickly recovered. Looking at Cheryl’s stunned face, I said, “I understand that emotion. I wish I could stay home with you every day, Sweet Pea.”

  The sales job had grown by leaps and bounds. I’d never received any training, but maybe selling science to middle schoolers prepared me for the job. Whatever the case, it turned out I was quite good at it. I carried a briefcase, wore a beeper, and had one of the first cell phones on the market. None of that looked glamorous to Brittany, though. She knew how dead tired I was when I got home at night.

  Within six months, I was the number one salesp
erson for my company. All of this success came with stress, from competing companies and within my own office. At least I was socking away money for Brittany’s college. My goal was to be able to give her the gift of graduating with no debt. I put the money into savings, and pretended it didn’t exist.

  In first grade, Brittany made a smeared mess of her homework with her dirty pink eraser. When I suggested that she start afresh with a clean sheet of paper, she howled in agony.

  “No! I won’t! This is good enough,” she yelled from the kitchen table.

  I quietly picked up the paper, wadded it up, and threw it in the trash can.

  “How can you be so mean?” she wailed.

  I picked her up and carried her to the hall, where I had hung a collection of sepia-toned family photographs dating back to my great-grandfather. The pictures spoke of poverty, of the Dust Bowl and days of endless work. The photos spoke of desperation, aging before your time, and dying too soon. I carried her down the hall. “This is your grandpa,” I said, pointing at a little boy in a wagon in front of the lean-to tent. “This is your great-grandma,” I said, indicating a white-haired woman holding up a dead wild turkey by its spurred feet. “These are your grandma’s sisters, eight of them. They all died of tuberculosis before they reached the age of thirty.” I pointed to a family photo with eleven children grouped around their parents. Heavy on my hip, Britt calmed down.

  “You come from these people, Brittany.” I watched her eyes widen as she examined the photos. “These are your roots. This is your family from way back.”

  Brittany reached out to touch the picture of my father. “Grandpa?”

  “He lived in that tent. His family never quit. They just kept going.” I tucked her hair behind her ears. “In the dirt, and in the wind, with no money. They weren’t quitters.”

  “They don’t look happy,” she said softly.

  “No, Sweet Pea, they don’t. But when Grandpa talks about these days, he calls them ‘the good old days.’ ”

  “Why?” she asked. “They don’t look like good days.”

  “Because they did the best they could with what they had. And that felt good to Grandpa.” I smiled as she wiped her tears with the back of her hand. “Doing the best you can feels good.”

  “It doesn’t feel good! It feels sad that I have to start over.”

  “I know it feels sad now, baby.” I kissed her cheek. “But wait until you see how great it feels when it’s finished.”

  That July, we traveled to Dallas to see my parents and my sister Donna, who’d flown out several times during the divorce to help with caring for Britt. Closest in age to me, Donna had been a source of calm strength during the emotional divorce proceedings.

  Nanna, Grandpa, and Auntie Donna all climbed in the car with Britt and me, and we explored the Fort Worth Historic District. Britt also got a taste of my mum’s strictness, which did not go over well. Later, I took Brittany to the creek than ran near my childhood home. I showed her the school I’d attended, and the stable where I’d boarded my horse. It was an important trip, as Brittany was old enough to see that I’d grown up quite a bit differently than she had.

  Brittany’s first grade teacher had told me that my daughter was gifted and would do well in a private school with smaller classes. So Brittany started second grade at St. George Academy, where there were only fifteen or so children in her class.

  In the third grade, Brittany was chosen to sing a solo part of Jasmine, with a little boy in her class singing the part of Aladdin. My friend Sherri and her son Tyler came to see Brittany’s amazing performance. I couldn’t believe children so young could step forward with such confidence and sing their hearts out. By this time, Britt was becoming less likely to say we needed a daddy, and more likely to brainstorm with me about ways to solve problems. She was into girl power, and she definitely wasn’t happy when I decided to marry for a second time.

  By that point, my daughter and I were as powerfully bonded as the neutrons and protons of an atom’s nucleus. Our temperaments were quite different, but we balanced each other out. We were interdependent, but we’d learned that we could live happily without a man in our home. Unfortunately, the man I’d been dating for three years and who ultimately became Brittany’s stepfather did not bond with her. From day one, the odds were stacked against us surviving as a married couple. Ultimately after six years of working at it, we separated and divorced.

  At ages eight and nine, Brittany and her best friend, Jennifer, zoomed up and down the street on inline skates, their legs becoming more muscular with every stroke. Brittany organized practical jokes on the phone, head thrown back, mouth wide in laughter. Britt and Jen went to equestrian camp, climbed trees, did cartwheels, performed chemistry experiments, and danced like no one was watching. They put on plays, modeled in pretend runway shows, and went on nature explorations on nearby walking trails. Fearless and courageous, they were an absolute joy to watch. These two little girls, on the tender edge of blooming into preteens, wrote a note to their future selves full of whimsical wisdom.

  Always believe in yourself. Always be friends. Stick together no matter what. We believe in you girls that are ladies now succeed through everything in everything. You are now 21 and probably in a good collage. Stay out of drugs and alcahal. Don’t ruin your life that you have ahead of you. Remember all of your good and bad times through your childhood and always remember god is with you and loves you. Remember that poem, footprints in the sand! Love yourself and be confident!

  Love

  Us

  Meanwhile, Brittany grew steadily in height, social skills, and scholastic ability. She needed vertical support, just as the flowering sweet pea’s vinelike stems needed something to climb. Her tendrils twined around me for structure and sustenance.

  Sweet peas are hardy flowering plants, with enchanting delicate flowers in a wide spectrum of colors. They need rich, well-drained soil and sun. With proper support, the canes can grow to fourteen feet. According to the pediatrician, my little girl might reach a height of nearly six feet.

  Sweet peas grow heartier when their heads are in the sun and their roots deep in cool, moist soil. Britt’s face was sunny and happy, and I felt that she was putting down a strong root system fertilized with my love.

  I adored the fact that when I picked Brittany up from school, she jumped into my embrace and twined her arms and legs about me. I couldn’t wait for each workday to end, so I could hear her latest joys and sorrows. I loved being Brittany’s trellis, her support.

  The image of Brittany as a climbing cane of delicate flowers stayed with me throughout her childhood, into her teens, through her illness, and right up to her death. Robert Kirkland Kernighan’s poem, “Sweet Peas,” captures my feelings perfectly, although I still cannot read it aloud without breaking down. He writes about his loved one dying, and planting sweet peas around her grave. He imagines the sweet incense of their scent floating up to God.

  There are sweet peas in my garden now.

  8

  Craniotomy

  January 6—10, 2014, the Week of Surgery

  When push comes to shove we can afford to lose an arm or a leg, but I am operating on people’s thoughts and feelings . . . and if something goes wrong I can destroy that person’s character . . . forever.

  —Henry Marsh, consultant neurosurgeon at Atkinson Morley/St. George’s Hospital in London, author of Do No Harm

  The decision had been made. Dr. Mitchel Berger, professor and chairman, Department of Neurological Surgery at UC San Francisco, was out of the country. His protégé, Dr. Edward F. Chang, would perform a craniotomy on January 10, 2014. Brittany was fine with this substitution, as Dr. Berger had indicated in a personal phone call to her that she was part of his patient family. He added that when he returned, they would schedule another surgery and try to get more of the tumor. But for now, to reduce the pressure, Dr. Chang would do a conservative surgery and get as much of the tumor as he could without risking the loss of any of her
eloquent skills.

  Young and fit, Dr. Chang inspired confidence in Brittany and yet she repeatedly warned him, “I don’t want you going into my brain and riding around like a rodeo cowboy.”

  Dr. Chang smiled at the unlikely image, and assured her that he was aware of the risks. Edward Chang specialized in and excelled at neurophysiological brain mapping to safely perform neurosurgical procedures in the eloquent area of the brain. He knew his way around the hospital, and he knew his way around the human brain. Dr. Chang looked Brittany directly in the eyes and patiently listened to her as she told him about her plans to move to Oregon and use the laws there to facilitate a peaceful death.

  “I need to know just how fast this son-of-a-bitch tumor is growing, and I know that means surgery to collect tumor tissue.” Brittany was talking fast. “I also need a DNR form.”

  Chang looked down at the floor, then back at Brittany. He asked why she needed a DNR now.

  Britt’s statement had felt like a knife wound to me. I wondered what it had felt like to him.

  “Because if something goes wrong and I flatline during surgery, I want you to let me go.” Britt’s voice was steady and firm.

  Dr. Chang shifted his weight and said that, in his opinion, having a DNR during her craniotomy was not a good idea.

  “I think it’s a great idea. If for some reason fate gives me the chance to die earlier rather than later in this process of dying from a brain tumor, I don’t want anyone intervening.”

  Dr. Chang studied Brittany for a few seconds. Then he asked what she would think if he could buy her five years of time.

  My heart fluttered. This was the most hopeful thing anyone had said so far.

  “Can you tell me with certainty that you can do that?” Britt stared at him, her eyebrows arched.

  The doctor said he would know more after the surgery. The tissue would tell them a lot. But he felt that she should hold off on plans for a DNR. He held Britt’s gaze for a moment, then asked that she not tie his hands during the surgery. He asked that she trust him.