Wild and Precious Life

by Deborah Ziegler

We met Gary in the lobby. I wrapped an arm around Britt and pulled her close.

  “Momma, he was only thirty-two. We grew up like brother and sister, and now we’re dying in the same year,” she said.

  When we got home, Brittany said, “I can’t stay here for a funeral. I just can’t. Today . . . what happened . . . it’s exactly what I don’t want to happen to me.” Her voice rose in panic. “I don’t want to be on a gurney. I don’t want to be intubated. I don’t want people trying to keep my organs going with machines. Promise me.”

  Scenes from Tyler’s life flew through my head like an old-fashioned sprocket 8mm film on a rickety old projector. A grinning little boy holding up a fish. Easter egg hunts. Tyler singing Sinatra on his karaoke machine. A lanky kid riding my saddle-shaped purse through the airport, pretending he was on a horse. Whitewater rafting. Faster. Faster. The film chattered in my brain. A tattooed back. A cigarette dangling. A sheepish grin. Tyler looking up at me as I told him, “You are loved.” A fleeting movement in those brown-flecked eyes, letting me know “I’m listening. I hear you. I’m dying.”

  Britt and I took showers, and she went first. While I was in the shower, we had our first really big thunderstorm since we’d been in Portland—angry, loud cracks that immediately followed bright flashes. I shut off the water and ran to Brittany’s room dripping wet, a towel wrapped around me. She was combing her long hair.

  Crack! We both started.

  “Tyler,” we said simultaneously. Brittany’s slight smile was forlorn. “He was always so naughty, even when he was little.”

  “It sounds like he’s enjoying some new power in the beyond.” I smiled, thinking that he had been given thunder privileges pretty early in his new place.

  “Momma, if there is anything after this life . . .” Britt paused. “If you’re right about that. Go to Machu Picchu—I’ll meet you there.” She reached for my hand and squeezed it.

  “I’ll meet you there, darling,” I whispered.

  Gary had made an appointment for Brittany with a doctor in Texas. Once again, we were still clinging to hope. This persistence on our part was painful. It was our way of covering up the nakedness and helplessness.

  “I’m not going to Texas,” Britt said the day Tyler died. “I was only doing it for you.”

  It was discouraging to know that hope could still hurt me so badly. I couldn’t even begin to imagine how much my hope hurt Brittany. And yet a little voice inside of me asked, What will it look like when we’ve beaten hope into submission?

  Would that place be acceptance? I couldn’t imagine what that would feel like. I didn’t want to know what that would feel like. I was starting to feel submission, which seemed like a passive, reserved word for what I was experiencing. “Submission” was a word with room for bitterness. I was not ready for “acceptance.”

  On June 17, Dan and Brittany flew back to the Bay Area, and Gary and I flew home. We offered Sherri and her husband the yellow house in Portland. We knew we couldn’t stay or help them, so we offered them our refuge. From there, she and Larry would plan Tyler’s funeral.

  In Southern California, I problem-solved with the staff where my father lived. He didn’t understand why I wasn’t there to see him regularly anymore, and his dementia was worsening.

  I continued to work on acceptance. Not just bitter acquiescence; I was trying to do better than that. I wrote Brittany the following letter in an email.

  My Darling Daughter,

  Today your grandpa asked about my mountain climbing girl, and I told him stories of Alaska. There was so much joy in the telling . . . the boom of calving icebergs, the bear’s glossy hair parting in the wind, our wild and wonderful boat captain . . . Dad sat spellbound. At the end he said, “You know what you’ve got there? A slice of the best of life.” We talked about how you’d inspired me to take that adventure. He said that there are three kinds of people. People that explore and find beauty in all the wild places in the world. People who can’t imagine going anywhere or seeing anything more wonderful than their own backyard. And people who can’t see beauty, no matter where they are.

  I want you to know that I will go to Machu Picchu with Gary. We will sit and think big thoughts. . . . I still fight denial every single day. This morning I told myself that two very educated doctors in Portland have looked at your files and agreed with you—that you might want to plan things. How much more tangible can the evidence be? But my heart just won’t accept this. Even as I type this note to tell you that I will explore the world more because of the impact you’ve had on me, I resist saying that I’ll be waiting for you to join me in the silent wonder of Machu Picchu. I’d rather have you fly there with me.

  But, that is not likely to happen is it, baby girl? This is me trying to say that I’m going to do a better job of staring death in the face. . . . Brittany, I’m trying to be present. I’m trying to feel what it is like to be hiking in the woods with you, to be cleaning and decorating a house with you, to be shopping for minutiae, to be watching a comedian, to be eating a meal—but my worries and my fears keep pulling me out of this moment into the fear of a moment that might happen tomorrow or next week. I am going to try to be in each moment with you. This is what we have. The rain. The hail. The sunshine. A cup of cocoa. Holding your hand and having people think we are a couple. These are the moments that we have. We have to live in them. I want to be “with” you.

  I hope you know that I love you as much as a human being can love another human being. That is what mothering is. You would’ve been a good mother. I would’ve been a good Mimmi—or whatever the hell we settled on as my grandma name. I am cut to the core that this is not in the cards for us. I don’t know who I will be on the other side of this. Everything I ever identified myself with was so wrapped up in being your Mom. Who will I be when you are gone?

  Will this new woman be bitter and angry? I hope not. I want to still be full of the love that fills me every day when I think of you. Like the feeling I woke up with today. I want to still feel love and kindness. I want to take on a new role because the one I planned is evaporating before my very eyes. My promise to you is that I will find purpose. I promise you that you will be proud that I evolved into a new and purposeful woman. I will not curl up in a ball and become bitter, angry, and so wrapped up in my loss that I can’t empathize and help others. I don’t know if I’ll have accomplished all of this by the time I meet you in Machu Picchu, but I’ll be working toward it. Because you make me want to live a bigger life—not a smaller one. You make me want to help others. You make me want to be brave and fierce. Fierce in a good way—not an angry, resentful way. Fierce in a way that advocates for what is good, right, and fair.

  I don’t know who you will meet in Machu Picchu. But you’ll recognize her. You’ll be proud of her. I know that you don’t like it when I talk about a Divine Spirit or Supreme Being. But I can’t end this missive without saying that with all that I am—I know that God loves you more than I do. And that thought always floors me. Because I can’t imagine a love bigger than the love I feel for you. A love that big. Eternal love.

  That is why I know I’ll meet you in Machu Picchu. A love bigger than anything our feeble minds can conceive will get us through whatever comes tomorrow. Today I just need to be present with you—in this moment. And though at present we are miles apart, I am with you. Loving you. Doing the best I know how to show it.

  I also want to apologize for the wrong-headed things I’ve done throughout my life as your mother. I can’t undo dumb things I’ve said and done over the years. And unfortunately, there is a great likelihood that I’ll make more mistakes. But I can tell you that you turned out wonderfully in spite of my insufficiencies or maybe even because of them. I am in awe of you sometimes. I am proud of you. Most of all—I love you eternally. I will be there. I will be present. I will be available. All of me.

  Love,

  Momma

  On June 30, Brittany came to visit us for a few weeks. She had given Gary and me a sa
il on a private boat for Christmas as a gift. Ironically, I gave Brittany an aerobatic ride in an open biplane over the vineyards of Sonoma. We had laughed at our similar lines of thought.

  As Britt, Gary, Pamela, and I lounged on the boat, enjoying the sound and smells of the bay, it was impossible to comprehend that when I had received this gift six short months ago, we didn’t know Brittany had a brain tumor.

  On July 5, we celebrated Gary’s birthday, and Brittany made him her famous homemade fudge. Britt’s high school friend Colette came over for a barbeque and swim in our backyard. The presence of someone who had known and loved her for so long was calming for all of us.

  Brittany also visited her grandpa for an unofficial goodbye. We took him on a long walk and he played his harmonica for us. When Brittany leaned over to kiss him goodbye, I heard her whisper, “See you soon, Grandpa.” Britt and I shoved sunglasses on to disguise our sorrow, and headed out as he fell asleep.

  Brittany met two friends at the beach. Both were now married and had babies. “I love them and I wanted to say goodbye, but Momma, it’s so hard to be around children.” Tears rolled down her face. “I wanted to be a mother.”

  My slow, stubborn mind finally grasped that my beautiful daughter was saying goodbye to many people. She was preparing to die in Portland. She was doing what one does when one is leaving and won’t come back. This realization struck me hard as I pulled her into my arms. “I know, darling. I wanted that for you. For me.” My voice shook.

  I tried to plan fun things to do, to keep everything clean and comfortable. But I was aware that I needed skills I simply didn’t have. No matter how hard I tried, I was failing at being upbeat.

  Maudie met Brittany at home in the Bay Area, and was with Brittany when she experienced another seizure. They seemed cyclical in the beginning, coming in a somewhat predictable pattern, but the in-between periods were getting shorter and the seizures were growing stronger. Clearly they were changing, getting worse in every way. Brittany had officially switched her medicine management to her palliative care doctor in Oregon. He recommended that she increase her antiseizure medication, explaining that the metallic taste was indicative of temporal lobe seizures.

  Brittany also met with the mom she used to nanny for, and got to see her former charges, now high schoolers. Brittany said it was “emotional but good.” The entire family made Brittany feel appreciated and loved.

  I flew up to be with Brittany at her and Dan’s house for a few days. From there, we would meet Gary in Carmel for Maudie’s wedding. The weather crept into the hundreds. Brittany was taking antibiotics for bronchitis. She was miserable, but determined not to miss her dear friend’s special day.

  Brittany was also having difficulty sleeping. When people with large brain tumors lie prone, the pressure builds inside their cranium and pain wakes them up. Brittany was also unhappy with the corticosteroid side effects, as anyone would be. Suddenly she had acne again, and the medicine caused her to gain weight. It was heartbreaking to watch her struggle to try to take long walks in an attempt to control her weight and keep endorphins flowing to help with the sadness. But outdoor temperatures in the hundreds and a case of bronchitis meant that she couldn’t go on walks. It was important for her to feel some sense of control of little things, like exercise and diet, because the big things were completely out of her hands.

  In addition, Brittany was covered in bruises and was retaining water. Her hands and feet were swollen. It hurt to wear her wedding ring. She would be taking the meds for the last months of her life, so the side effects would only get worse. She tried to keep a good attitude, telling me to order her Spanx for the wedding. “Get one that I can cram all of this fat in,” she joked.

  But when we got to the location on the coastline, Britt was inconsolable about the dress she’d picked out to wear. She didn’t like the way she looked in it, feeling that the dress emphasized the weight gain from the drugs. She decided not to be a part of the bridesmaid photos. She wanted to wear something comfortable, and “no photos.”

  At the reception, in the glow of the setting sun, her mood changed, and my daughter whirled and danced with her dear friend Amber. They spun around like children on the grassy lawn. I was washed with happiness and relief as Brittany’s Berkeley buddy loved her, danced with her, and hugged her so hard she spilled champagne. Watching them, Gary’s arm around me, I felt incredibly old. I said a prayer that Britt’s friends would still care for me, share with me, when my only child was gone. I felt selfish thinking about this. At the same time, I realized that acceptance was what I’d been working toward for so long. So this is what it feels like? I thought. Lonely.

  In contrast to my premature loneliness, Brittany flitted from person to person, mingling and talking. She met a young woman who worked in the media industry in New York. She was blown away by Brittany’s clarity, coherence, and eloquence in articulating the reasons she was proceeding with her course of action. This young woman insisted that Brittany must tell her story. She must write an article. Her parting words were that she would be putting Britt in touch with various people.

  Brittany and I flew to Portland immediately after the wedding. She had an appointment with her palliative doctor on July 23. He adjusted her medications, answered all of her questions, and took time with her, something we hadn’t experienced in California. He also referred her to a therapist who specialized in working with terminally ill patients. In order to stop thinking about when she would need to plan to die, the therapist suggested that she pencil in a date. Just a flexible date that could be pulled in or pushed out. Something to stop circular thinking about that day. Britt chose November 1, 2014—after Dan’s birthday, and before her thirtieth birthday.

  My sister Sarah, her husband, and their daughter came from their home in Georgia to Portland to be with Brittany for a week and to support us. Two of Britt’s friends, Mina and Darcy, also flew in at the same time.

  The girls tromped around in the woods exploring Wildwood Trail and Forest Park in Portland. Brittany was happiest when walking on these trails, and her friends indulged her in a very long hike. Afterward, Britt took a shower and I hovered nearby as I usually did, worrying that she would fall or have another seizure. Brittany had documented every experience since they started in April. There had been a dozen, and over time they had gone from tingling and eye fluttering to full-on seizures.

  “Momma.” With that one word, I knew she needed help. Britt was naked, save for a towel, and her hair was dripping wet.

  “What is it, baby?” I touched her wet shoulder.

  “Don’t feel good. . . . It’s happening.”

  I pulled the bedcovers back. “Lie on your side.”

  “I don’t want to lie down.” She sat on the edge of the bed, shivering, her eye fluttering.

  “Brittany, please lie down on your side.” I’d read the protocol for helping a person experiencing a seizure. For me, the seizures were terrifying. The surge of electrical activity in Britt’s brain caused the muscles under her facial skin to tremble and her hands to curl inward. There was a short period while her body tensed and then the violent jerking began. Sometimes people had difficulty swallowing during a seizure and they drooled. I’d read that it was best to lie on one’s side so that fluids could drain out of the mouth. Some people thought you were supposed to put a spoon in the mouth of people who were seizing to keep them from biting their tongue. This was not true. You could cause a person to break teeth, even swallow teeth. In light of all this, why wouldn’t she ever do as asked? “It’s safer if you’re going to have a seizure.” My heart was pounding as I watched the left side of Brittany’s face ripple like the surface of water under hard wind.

  “Bad one coming . . .” Her body stiffened.

  “Baby, lie down. Don’t fight it. I’m right here.” Before the words left my mouth, I was busy trying to keep Britt’s flailing, jerking body from falling to the floor as all the muscles in her body contracted at the same time. Even the muscles of h
er chest wall contracted hard, forcefully pushing air out of her throat in the most frightening sound I had ever heard. The moan sounded as though Brittany was deeply sad and afraid.

  Blood flew because she had bitten her tongue. The towel, bedspread, and sheets were splattered. It seemed like such a lot of blood because she was jerking and convulsing. One of the girls handed me something to put on her. Water ran down Britt’s back as I pulled a T-shirt over her head and helped her lie down. Someone handed me a pair of Brittany’s panties, and I worked them up her legs and asked her to lift her pelvis. I was given a cold washcloth to place on her punctured tongue.

  Brittany talked gibberish. The three of us spoke in soothing tones. I gave my phone to Mina and asked her to call my sister, who was staying in a hotel nearby; my hands were shaking too badly. When I heard Sarah’s voice, I just said, “Come now. Brittany’s had a bad seizure.”

  Britt’s first words that made sense were about pain. “Head. Eyes. Hurt.” We placed a cool cloth on her eyes.

  When Sarah arrived and clattered up the stairs, she felt Brittany’s pulse and spoke gently to her. Darcy and Mina looked how I felt. Shaken to the core. Gutted. Hollowed out. I gave them my credit card and told them, “Take the car and go to Zupan’s Market.”

  They looked at me wide-eyed. I continued, “If you need to pull the car over and talk and just process this . . . it might be a good idea. Take your time. Pick out some fresh foods.” I tried to be the adult in the room, when I wanted to fall apart.

  When the girls left, Sarah and I kept cool washcloths on Brittany’s eyes. “How did I get clothes on?” Britt asked.

  “I dressed you,” I said softly.

  “Oh.” I suspected she hoped that she didn’t flail about in the nude in front of her friends.

  For some reason, not remembering how she was dressed disturbed Brittany a great deal. “I lost consciousness. I bit my tongue. I could feel it was going to be a bad one.”