Back at her bed, I climbed in beside her and read three stories. I slipped out of bed, pulled her covers up, and stroked her hair, the way Mary Poppins smoothed little Jane’s hair while singing the “Stay Awake” song, a tongue-in-cheek admonishment to not fall asleep.
When Brittany and I moved to a smaller rental home, I continued playing the role of the all-knowing Mary as I struggled to gain footing in my new life as a single mom. Eventually Brittany’s father stopped visiting her. His absence resulted in her idealizing him for some years. He became the absent but perfect daddy that would have solved all problems, had he only been there.
I tried to model myself a little after the marvelous Poppins. I didn’t have her uncompromising authority and confidence, but I did my best. Unlike Mary, I tried to explain the unfathomable: why Brittany’s father never came to see her. Both mother and daughter gleaned lessons from revisiting Poppins’s world so many times. Britt imagined herself in far-off and exotic places, and as a young adult, she made those journeys happen. In fact, she traveled alone like Mary, with a duffel bag instead of a carpetbag. I tried to imitate Poppins by being resourceful and taking Brittany on adventures: seeing plays, visiting museums, and going for walks.
Brittany carried Mary Poppins with her throughout her life. She exuded authority and confidence. She knew that if she truly listened to those who lived very differently, they had wisdom to share. Brittany became a nanny in her twenties while at Berkeley. Like Poppins, she instigated questions and then left it to her youthful charges to search for answers. The children adored her. She was matter-of-fact, trustworthy, and in command of just about every situation.
Mary had a knack for knowing when to come and go. She traveled on the wind, and she left when she had served her purpose. Leaving was hard—even for Mary Poppins. For the briefest of moments, we saw her blink back tears at the end of the movie, as she listened to the parrot head on her umbrella talk about how he wasn’t fooled; he knew how she felt about the children. Ever-efficient Mary just clamped the parrot’s mouth closed, snapped open her umbrella, squared her shoulders, and rose into the sky.
In many ways, I think my daughter followed suit. She closed the mouths of those who tried to muddle with sentiment her decision to die; she squared her shoulders and decided for herself when she would catch the next wind out of this world.
4
Not on the Same Page
January 3, 2014, the Night After Diagnosis
Everyone must sing from the same hymn book.
—Dean Lombardi
“Momma.”
I awakened in the middle of the night. In the dim light of the hospital room, I saw that Brittany was sitting up, pulling on her IVs. “Sweetie, what is it?” I sat up and reached for her hands, worried that the bed alarm would trigger.
Britt shook me loose. “I can’t breathe.” She placed a hand on her chest. “I’ve got to get out of here. I need to get to Oregon,” she said, throwing back the covers.
I got off my makeshift bed and leaned over her. “Brittany, we don’t need to go anywhere right now,” I whispered as I held her hands. “Please don’t pull your IVs out, darling. You hate them searching around for veins. You’re so bruised already.”
Brittany looked down at both arms. It seemed as if she was noticing the bruising for the first time. There were several knots on her hands, one protruding worse than the others, from previous insertion sites. At the bend of both elbows were large blue bruises where veins had blown or the IV cannula had migrated outside the vein.
“Brittany, you only make it worse when you pull out your IVs. You don’t want the doctor to order wrist restraints, do you?” I gently touched the knot on her right hand. “You already have a bed alarm.”
“Momma, I need to get out of here. This brain tumor is going to kill me in a horrible way. I don’t want to die like this. Please help me.” Panic filled her eyes. “They can’t do a damned thing for me here.”
“Let’s try to take this one day at a time. I think we need to get more information. I don’t trust this doctor.” I stroked her hair, and pulled her covers back up. “It’s cold in here at night. Let me get you situated.”
“I am cold.” Britt tried to pull the thin blankets higher. “I can’t sleep. I keep thinking about dying a horrible death.” She moved her arms around on top of her thin blankets. “My heart feels like it’s beating too fast.”
Mine stopped, then jolted back into a faltering rhythm. I wanted to crawl in her bed and hold her close to me, smooth her brow with my fingertips and draw circles on her back; simple things that used to soothe her as a child. But she wasn’t a child, and I couldn’t crawl into her bed. My mind raced, thinking of how I could calm her, redirect her thinking.
“Here’s what we’re going to do.” I recalled the mindfulness recordings on my iPad. “First, I’m making sure all your IV lines are straight, okay?” I straightened the lines, careful to ensure they weren’t tugging the injection site. “Then I’m putting one blanket lightly over the top of everything, so your arms and hands have some warmth.” I pulled a blanket off of my makeshift bed and fluttered it over her still body. “Then I’m going to turn on my mindfulness recording.”
“Oh, Momma. I don’t do that meditation stuff.” Britt started to lift her head.
I smoothed Brit’s braids on either side of her face. “If you hate it, I’ll shut it off. My mindfulness teacher has a really soothing voice. It’s better than lying here worrying.”
“I’ll try. But you have to promise to turn it off if I don’t like it.” She sounded drowsy.
I sat cross-legged on my bed so that if Brittany opened her eyes, she’d see me doing the breathing exercises. I pushed “play,” and closed my eyes.
A flute and violins sounded softly in the quiet of Britt’s dark ICU room. Karen Sothers’s beautiful voice read a quote from Thomas Merton about there being places of peace in the midst of noise and confusion. Merton said that in this place, love could bloom. I felt my heart loosen and let go. Hot tears rolled down my cheeks.
The voice on the tape continued. “Serenity is the quality of being calm, clear, quiet, composed. Equanimity is the spacious stillness that accepts things just as they are unfolding moment to moment.”
How, I wondered, would we be able to ever achieve this state of mind? Karen’s voice asked us to settle into a relaxed posture. I saw that Brittany had placed her hand on her belly.
Good.
I mouthed the whispered words “in” and “out,” just as the tape directed me to do. For the first time in days, I let go. As I breathed, I prayed that Brittany would feel some calm.
I sat upright and listened to the voice talking about being in the present moment, as if my life depended on it. In a way, it did.
Once Britt was asleep, I shut the recording off and climbed under my covers. But she awoke three more times before breakfast. Each panic attack was as bad as the one before. Each time she wanted to unhook her IVs and leave the hospital. “Momma, please get me out of here. Nothing good will happen here. We need to leave.”
During one of those times, the nurse and I brought the portable toilet to the side of the bed and I held her lines while she peed. “Momma, I’m dying. There is nothing to be done about it. Please help me get to Oregon.”
I handed Britt some toilet paper and looked at the nurse. His back was toward us as he tried to give Brittany some privacy. How many times is my daughter going to stab me in the heart with this sentence? Don’t we still have some checking out to do before we accept this diagnosis?
“We need to wait and get a second opinion.” I helped her straighten her hospital gown and hold it up.
I knew the nurse was listening, but he stayed occupied with paperwork, his back to us.
“I need my computer. Why hasn’t Dan brought my laptop?” Britt asked.
“The doctor doesn’t want you looking at the television or computer. They want to bring the swelling down in your brain first. I know it bothers you, but t
here will be time later for doing research.”
Once she starts researching her illness, she’ll become a walking encyclopedia of information about it, I realized. She will see some of the disturbing things I’ve already read. But how can I protect her from the pain of that? I’ve always told her knowledge is power.
“I don’t care what the damn doctor wants. There isn’t a lot of time. Mom, I need you to get this.” She held both of my hands as she prepared to sit on the bed. “Did you hear what the doctor said? I have a big-ass, fucking brain tumor!” She sat down and turned to swing her legs up. “It’s going to kill me. You do get that, don’t you?” She tugged at my arm, eyes full of terror. “I need to plan.”
Gary and I are planning. We are not giving up. There is a doctor somewhere in the world that can buy us time. Gary has some ideas already. But this isn’t what Britt wants to hear right now.
My child grasped at me like she was being sucked down in quicksand. The nurse helped me get her covers pulled up and her pillow placed properly. He turned on the pressure pad beneath her, and put the pneumatic compression devices on her legs.
This is not real. I know that we’re going to get a second opinion that makes a liar out of this cold fish of a doctor. I was focused on getting better news, a path forward, a treatment plan that would buy us time. My daughter isn’t going to die. She can’t. I won’t let her die.
“I’m right here at your side, baby. We’ll get a second opinion. We’ll research every avenue, I swear.”
“A second opinion. That’s a good idea,” echoed the nurse. “For now, you need rest.”
“Do you want to listen to the mindfulness recording again?” I asked.
“I’m not into this meditation shit.” Agitated, Britt rearranged her pillows, tangling her IV lines again. “I’m utterly terrified. I can’t believe it. How out of all the people in the world did I get a brain tumor?”
I was wondering the same thing. Was it the traveling to foreign countries? The stress of trying to excel at everything she did? The stress of losing her father when she was so little? Could this have all started when she hit her head on the windshield as a teen? Was it genetic? Her paternal grandmother had died of a metastasized melanoma on her head. Over time I mentioned all of these things to doctors, but received no answer as to whether any of them could have caused the tumor.
“I know, but for now, all you have to do is just breathe.” This is all I have right now. This mindfulness tape is all that I have in my Mary Poppins carpetbag. It’s all that lies between me being here for you and me running down the hall screaming. Please, please . . . listen to it with me.
“It helped you go to sleep last time, sweetie,” I said.
“We can listen with the volume down. I don’t need to hear what she’s saying; I just want to hear the rhythm of her voice.” Britt allowed her head to rest and closed her eyes. The recording continued. “Each moment that you reconnect to the still point within your breath, you connect to the sacred sanctuary of peace and calm that lives inside of you.”
I knew that I needed to find this sanctuary, but in that moment, there was no safe place in the universe, much less inside of me. I had no peace; no calm. I was a tangle of panic and fear. There were many times in my life when I’d been afraid, but I’d never experienced terror at this level. I’d never felt this powerless as a mother. Never this vulnerable as a human being. Never this alone as a spiritual being.
Brittany had been the center of my life for so long. Unacceptable emotions—despair and hopelessness—were beginning to prevail, but I was determined to hide them. I had to make sure Brittany didn’t give up.
I needed Gary to find someone who could buy us time. I asked this of him because when I’d tried to read about Brittany’s diagnosis, I couldn’t take it. It made my stomach hurt when I read about star-shaped astrocyte cells dividing and multiplying. When I read that healthy astrocyte cells were long considered the “glue” or supportive tissue of the brain, and are now known to be integral to sophisticated brain processes, I involuntarily shuddered. My gut churned when I read that brain tumors formed from cancerous astrocytoma cells were called “diffuse astrocytomas” and were typically diagnosed in young adults between twenty to thity-five years of age. Oh my god, this sounds like the specific type of glial tumor she probably has. The worst part for me was the description of tiny, microscopic, tentaclelike fingers invading healthy tissue in the “thinking” part of the brain.
Unfortunately, this research stripped me of my naïve belief that the tumor was just a thin layer of abnormal cells floating on or draped across the top of Brittany’s brain. After reading just a fraction of the information, I knew, although I recoiled from the knowledge, that the tumor had infiltrated her brain and taken over some of the surrounding healthy tissue. The brain and the tumor had entwined as one. Worse, most of the MRI images in the literature showed small distinct areas lit up by the contrasting dye. Brittany’s MRI showed a huge portion of her brain fuzzy and softly glowing. I’d read that a complete resection or surgical removal of a diffuse astrocytoma was impossible because of the insidious penetration of a tumor’s tentacles into normal brain tissue.
The information I had absorbed tormented me, even when I closed my eyes and tried to rest for a few minutes. Inside my daughter’s beautiful head—in her frontal lobe, the part of the brain responsible for the higher functions of thought, memory, and judgment—function had been moving around over the last ten years. I marveled at the plasticity of her brain, which had adapted as best it could to being invaded by small, star-shaped cells. For some reason, it was important to me to envision what the tumor looked like. Perhaps creating an image in my mind made me feel as if I had some sort of control; as though I would be better able to look for medical hope if I could somehow create a blueprint to work from. I’d read that the infiltration of the brain by astrocytes made the brain matter firmer and ivory-white. I’d also read that as the tumor advanced, the brain took on a softer consistency and even created its own blood supply by mutating into blood vessels.
Of course, I wanted to know what caused this hideous monster that had attacked my child, but all I found out was that for some unknown reason, there had been a change in the genetic structure of her brain cells. Only a minuscule percentage of people inherited this deviant genetic structure. Researchers thought that environmental factors might cause brain tumors, but there was no conclusive evidence. It appeared that people exposed to petrochemicals or pesticides (Brittany hadn’t been) were at higher risk. Studies about high electromagnetic fields had been conducted, too, but no one really knew what caused brain tumors.
Earlier in the day, I had turned my iPad off and gone to the bathroom to throw up. I’d told Gary that I couldn’t do any more research. “Maybe later,” I said. “Right now part of me wants to know, but part of me can’t know.”
None of these reality checks stopped the plan that was forming in my mind. We would find a way to buy some time—probably surgery to remove some of the tumor—and during that borrowed time, a cure would be found. This popular cancer myth was the one we hung onto, and it gave us an emotional buffer. Unfortunately, translating the latest pivotal research into real-world advances is an agonizingly slow process in the United States. Gary and I hadn’t yet grasped that cancer research is a grueling marathon (approximately three decades from lab discovery to FDA approval), not a quick sprint. Britt, on the other hand, had already comprehended that she didn’t have that kind of time and stared death squarely in the eyes.
5
The Two of Us
1987—1988, Ages Three and Four
Children will not remember you for the material things you provided, but for the feeling that you cherished them.
—Richard L. Evans, Richard Evans Quote Book
After the divorce, Brittany and I moved to a modest one-story home I’d bought in Orange County, California. I turned it into a girl house. The walls were painted the palest hint of pink. We had beautiful flowe
red wallpaper in our tiny dining room. It was about a fourth of the size of the home we’d lived in with her father, but it was peaceful, and it was ours.
My parents drove all the way from Dallas, Texas, to help us move into our tiny new home. My mum, Iris, whom Brittany called “Nanna,” commented with typical candor, “You need Barbie furniture for this house. Your furniture looks oversized, as though we’re stuffing sardines in a can. It’s all out of proportion.”
“It’ll have to do.” I tried not to snap at my mum; after all, she’d driven all this way to help. But, honest to God, if there was a way to make me feel worse about a situation, it seemed she knew how to do it.
My father, who was raised in Oklahoma during the Dust Bowl, was quiet as usual. He mumbled something and took his tools outside to build Brittany a little playhouse with a real shingled roof.
I grew up in Dallas with this odd pair, an Okie and a Brit. My mother said tomahto and my father said tomayto. Mum spelled it “colour” and Daddy spelled it “color.” They were as different as two people could be. Even as a child, I knew that Mummy couldn’t have picked a place to land that was more barren for her spirit. At Sunday school, I learned about sowing seeds on fertile ground. I pictured my mum as a British seedling landing on the clay-and-alkaline soil of Texas. Mum was named Iris, a flower born in rich, loamy soil; but here she was in an environment where soil was thin with a solid layer of limestone beneath it.
Mum’s crisp British accent couldn’t have been more different than my Daddy’s drawl. My Oklahoma/Texas relatives were huggers, cheek pinchers, and “bless your little heart” kind of folks. Mum and her family were a reserved, penny-pinching, “stiff upper lip” kind of crowd.
Mum made sure we had the fear of God (and her) put into us, and that we were clean and well fed. She found the hugging in my dad’s effusive family “a bit queer.” Iris was no shrinking violet and enjoyed, indeed thrived on, a good confrontation. Mum and Dad fought loudly and even physically all of my life. I made a rule that if they wished to be around Brittany, they couldn’t quarrel in front of her. My siblings, two sisters and a baby brother, and I grew up practically living on the buckle of the Bible Belt. I learned conservative religious values, while at the same time observing that the folks who talked the talk sometimes didn’t walk the walk. At my house, what you saw was what you got. My parents weren’t strangers to giving a good whipping, and Mum could shriek our names loud enough to be heard a block away.
Wild and Precious Life Page 4