Wild and Precious Life

by Deborah Ziegler

  I refuse that procedure because I want to live fully until I die. The rest of my body is young, fit, and retaining fluid, so I would likely hang on for days or even weeks before I died. I don’t want that.

  Also, palliative sedation usually requires hospitalization. I want to be sure my husband and mother are with me when I die. I want to leave this earth in my home, in the arms of my husband and parents.

  I can’t change the fact that I am dying, but I am living my final days to the fullest, spending time enjoying family, friends, and the great outdoors. And I am preparing to experience the best possible death. Achieving some control over my passing is very important to me. Knowing that I can leave this life with dignity allows me to focus on living. It has provided me enormous peace of mind.

  The inevitability of death is universal; the widespread support and overwhelmingly positive response to my story represents [that] our community is ready to have a new conversation about death.

  The decision about how I end my dying process should be up to me and my family, under a doctor’s care. How dare the government make decisions or limit options for terminally ill people like me? Unfortunately, California law prevented me from getting the end-of-life option I deserved.

  No one should have to leave their home and community for peace of mind, to escape suffering and to plan for a gentle death.

  For the vast majority of people, that is not even a remote possibility because of the cost of moving, the inconvenience to the family, and the time it takes to change your residency status, find new doctors, confirm your eligibility, and obtain the medication. This must change.

  Every one of us will die. We should not have to suffer excruciating pain, shame, or a prolonged dying process.

  The laws in California and forty-five other states must change to prevent prolonged, involuntary suffering for all terminally ill Americans. As elected officials, you have the power to make this happen. Please take action.

  Every terminally ill American deserves the choice to die with dignity. Let a movement begin here, now. Access to this choice lies in your hands; freedom from prolonged pain and suffering is the most basic human right.

  Please make death with dignity an American healthcare choice.

  Thank you.

  It was a cloudy, gray day, and Brittany was feeling so fatigued from the long previous day. Filming takes many hours, just to get a few minutes of usable footage. It was a short interview to watch, but it required grueling hours of having the house rearranged, lights set up, and so much film that wasn’t used. The one bright spot of the long day was when Brittany and I went back to visit Gary, where he was holed up in the small office with the dogs. He had the windows closed, curtains drawn, and music playing softly, trying to keep Bella and Charley quiet while filming was being done. Charley had had gas. All day.

  “Oh . . . My . . . God.” Brittany waved the air with her hand. “It smells terrible in here!” She bent to hug Gary. “You are the most patient, kind man in the world.” And then she started laughing, as only Brittany could. I started laughing, too. The film director came in to shush us, and she also started laughing. We needed that moment.

  The gloom turned into rain. After they packed their equipment up and left, I made banana pancakes for dinner. Brittany and I sat on the sofa, watching the rain slash at the windows.

  “Momma.” She reached for my hand. “With my diagnosis—this is as good as it gets. What we’re doing here in this little yellow house, is as good as it gets.”

  And for a little while, it was.

  The next day People magazine hit the stands, and Brittany was on the cover, with the title, “My Decision to Die.” There for the entire world to see was my heartache, my all, my only child—beautiful, clear-eyed Brittany staring straight at death.

  Brittany had mentioned in an interview that she would like to see the Grand Canyon before she passed, and a man who owned a helicopter tour company reached out to try to make it happen. Dan spent a great deal of time arranging this. Kind people were reaching out, trying to support my child. On October 19, we left for Vegas, where Brittany and Dan had been comped a gorgeous suite. Gary ordered room service the first evening, and we dined in the privacy of the suite.

  The next day, I received a kind email from Katie Couric, wishing me strength and comfort. I was extremely touched because Katie had lost both her husband and sister to cancer. She knew the pain of losing loved ones before their time. Katie, a mother of two daughters, shared that she could not fathom losing a child. It was a note from one mother to another.

  Our Vegas hosts treated us to dinner and Cirque du Soleil. The next day, we were picked up in a limousine, and Brittany was treated with the utmost care and respect by the helicopter touring company. Her privacy was guarded, and our pilot had been handpicked for not only his expertise, but his temperament.

  As we hovered over the Grand Canyon, Brittany and I smiled at each other. Even Gary, with his fear of heights, appeared to be in a state of bliss. The ginger-, cinnamon-, and curry-colored striped bands of rocks perhaps 70 million years old lay below us, in contrast to a turquoise sky laden with cumulus clouds. Brittany took a photo of her shadow stretched across the antiquity of time, and I appreciated the symbolism. We, too, were trying to stretch time on this day, to slow it down.

  As shadows lengthened, the blue of the sky deepened, and time seemed to be the lesson we were there to learn. We live our lives thinking we have time. I looked back and realized that some of the time that I thought I’d wasted was actually the best time spent in my life. Giving someone you love your time, if you are really present with them, is the greatest gift. My girl and I had little time left, and the clock seemed to be ticking louder and faster.

  It was a day for pushing aside fear. At the Grand Canyon Skywalk, a horseshoe-shaped bridge with a glass floor, we walked above a vertical 800-foot drop to the ledge below. The muddy Colorado was 4,770 feet down. Gary even walked on the terrifying loop of glass. Death was near now, making its presence known no matter what we did.

  We all seemed to have a little bit of Brittany’s bravado. So what if death came a few days early, a few weeks early? Death had already enfolded Brittany in a clinging embrace—she was already gone. “Momma, I’m only living for others. I no longer live for myself. I just want to get to Dan’s birthday and then move on.”

  I thought of death all the time; Brittany’s and mine. The level of fear, tension, and sorrow I lived with was a servant to cancer. I imagined stress mutating and damaging cells even as I looked past my feet through the glass floor at the canyon. I felt that it would not be long before I followed Brittany. This thought neither frightened nor saddened me.

  What mother wouldn’t feel the same abject terror that I felt? The same helplessness and despair? The same desire to go with her child? All my friends assured me that they would be in worse shape. “At least you aren’t curled up in a fetal position,” one friend said. “That’s where I’d be if I were losing my daughter.”

  My sister and Gary arranged for me to see a Portland therapist who could assist me with stress using a technique called eye movement desensitization and reprocessing (EMDR). The technique, used with post-traumatic stress disorder, involved moving my eyes from side to side while thinking of disturbing situations. EMDR seems to create positive consequences with regard to how the traumatized brain processes information, especially moments that the brain has “frozen in time” due to shock or anguish. Eye movement can reduce the intensity of disturbing repetitive thought. Even though I only saw the therapist a couple of times, it was helpful to learn of this technique because I continued EMDR therapy with another therapist in San Diego after Brittany’s death.

  Not long after we returned to the hotel, Brittany had a seizure in her room with Dan. I was called down to keep her company, while Gary and Dan set about procuring food for dinner. Brittany shared a description of this seizure on Facebook, which thankfully didn’t occur in the helicopter above the Grand Canyon:


  I just had the worst seizure of my illness in this last hour. Felt it coming on like something different and thankfully sat down, tried to call for my husband Dan but couldn’t remember or say his name aloud. Then apparently lost consciousness, bit my tongue, bled all over the bed and shook and twisted. When I woke, I didn’t know where I was, had to ask why we were here in Vegas . . . That was scary, so much pain and confusion, tears. Life has really been unfair at times (for many I realize) but I have tried to be brave, embrace what is real and prepare, advocate for other terminally ill rights. How dare those who haven’t stood in the shoes of the terminally ill try to argue we deserve to suffer more physical and emotional pain, fear, and loss in the face of inevitable death? I can’t even dress alone right now and things will only get worse.

  Unfortunately, no one could keep Brittany from reading the hateful things that were posted online. I tried not to look at the comments, but I was like a crazed bird attacking a reflection in a mirror or window. I read horrifying, cruel statements. I couldn’t stop deliberately raking my talons at the image of my own religious past. I read hundreds of statements that made me ashamed to have ever been affiliated with such judgmental thinking, such small-mindedness. In the beginning it was a window collision, me accidentally banging into the reflection of childhood beliefs, but eventually I intentionally flew right into the ugly image, bloodying my heart in the process.

  I sent Brittany articles written by loving, logical Christians. I couldn’t help myself. I didn’t want her to end up hating all Christians. For the first time in my life, I was ashamed to call myself a Christian, because there was nothing Christ-like in much of what I read.

  Brittany was raised in the church. She went to religious schools; we prayed together, and she had begged for God’s intervention and grace at many different times in her life. But as she faced death, many members of the church treated her unkindly. It was impossible for me to defend that behavior.

  Any mention of prayer, the church, or belief in God now enraged her. And why wouldn’t it? In a haze of pain and painkillers, she read the most odious hatemongering imaginable—from people who called themselves “Christians.” Who wouldn’t be angry? I certainly was.

  We returned to Portland on the 23rd, and surprise . . . it was raining. Gifts cheered Brittany in this gloomy weather, and flowers and a handmade CD of music from a middle school friend helped chase away the blues. The next day, she had a doctor’s appointment. If things went as planned, it would be the last appointment with the palliative care doctor. The mood was somber because it was a goodbye.

  October 24 was not just gray; it was dark. With nothing on the schedule, time seemed to tick forward as if someone had wound the clock too tight. Time whirred by, and yet it seemed frozen. As we faced the last week before Brittany’s death, it was like being on the edge of a black hole, frozen forever in a countdown of misery.

  Brittany cuddled in her bed. I joined her with the book we’d been reading and a warmed neck buddy. “It’s really raining,” I said.

  “Again? I’d hoped that we could go for a walk,” Brittany murmured. She sighed as the heat from the neck buddy soothed her. “Can you turn on the aromatherapy machine? It seems to help my headache.”

  I filled the basin of the diffuser with warm water and sprinkled in fragrant oil. Slipping back into the bed, I opened the Kindle and read to her until I was almost hoarse. The rain spattered against the windows louder, and trees swayed in the wind. I shivered as a lightning bolt lit up the dim bedroom. A low rumble was followed by a crash that seemed to shake the house. Another lightning bolt flashed. The lights flickered off.

  “Damn,” we said in unison. I got up again and lit some candles. We’d dealt with outages before, but not in cold weather. I decided to read to Brittany a little longer. There was nothing else we could do. Eventually I closed the book and Britt rolled over on her side, facing the window. Rain sluiced down the old paned glass. The house had grown dark and cold. I wondered if the electricity would be off all night. Gary and Dan were, I assumed, still downstairs.

  “It will be just endless blackness and towering stacks of dead babies, their stinking carcasses filling the air,” Brittany said.

  “No, Britt. Don’t say that!” The image struck close to the bone, re-creating an image I had been trying to erase from my childhood. I had been trying so hard to overcome beliefs that were implanted in my mind by my parents and teachers; attempting to unravel what I was told as a child. I’d sifted through and rebelled against the beliefs that I didn’t choose.

  I’d tried to undo almost sixty years of teaching to arrive at a place of acceptance. A place where I could resist the urge to cling to my daughter and beg her not to take the medicine. A place where a higher, wiser, kinder part of me could comprehend that what Brittany was feeling and planning actually made a great deal of sense. A place where I would sit and watch her die by her own hand.

  She and I had been on eggshells about this subject ever since the day of the diagnosis. I’d repeated over and over that I supported her, that I was not afraid for her. Just as I could spot her voice in a crowd of noisy toddlers, I told her that I would find her bright light and energy anywhere in the universe. I tried to stay away from specifically talking about God, although I couldn’t help but tell her I believed I would be with her again.

  But this was what I said. “I know that you have different beliefs than I do, but I do not believe in hell. I don’t believe in damnation.” I struggled to push the covers aside and sit up, but Brittany was already standing, facing me in the flickering candlelight.

  Her face contorted, twisted with fury. She screamed, “You fucking selfish cunt!”

  It felt like she had slapped me, hard. I was confused. Shocked. What had I said or done to deserve this?

  I jumped up. “What did you just call me?” I said, fists balled at my sides.

  “You heard me. You are a fucking selfish cunt.” Brittany swiped at me with her arm, pushed past me, and left the bedroom.

  I followed her, trembling in anger and hurt. “Why are you talking to me like this? You haven’t wanted to talk about religion. I’ve tried to respect that.”

  “Oh, really.” She turned at the top of the stairs. “You’ve fucking tried?” She started down the stairs for the kitchen, and I followed.

  Someone had lit candles in the hallway and the kitchen. Brittany filled a glass at the sink faucet and drank a swig. “You fucking selfish cunt! Always thinking of your fucking self.” My daughter’s bellicose face was half in the dark, half lit by the flickering candle. Thunder clapped as if to punctuate her sentence. She slammed the glass down on the counter. She paced in the dark of the kitchen.

  Suddenly, I knew that Brittany wanted to hit me. I knew that she needed to hit me. What have I done to deserve this level of rage? I thought. I looked steadily at my child and said, “You want to hit me, don’t you, Brittany?”

  She lunged toward me and cuffed my head. “Fucking bitch!”

  The words hurt so much more than the cuffing. “You’re not finished, are you? Do you still need to hit me?” I asked.

  “Bitch!” she screamed. I saw her come at me with both fists balled above her head. I took the pummeling, not moving my arms.

  “Do you want my head to hurt as bad as yours does?” I asked as I bent my head, almost as if in supplication, and this time I covered it with my arms. I was still asking my daughter questions, thinking she was capable of lucidly answering them.

  The blows came like the rain. I started crying. “Help me. It hurts.”

  Gary and Dan arrived simultaneously, and Dan pulled Brittany off me.

  “Brittany, you can’t resort to violence. You cannot hit your mother,” Gary said, taking me into his arms.

  Brittany lunged at us, this time swiping at Gary. Dan was having a hard time holding her back. “You always stick up for her, no matter what.”

  I watched Britt struggle in Dan’s arms. “Look,” I said as though I were noting scient
ific evidence. “She still wants to hit me.” Britt continued to try to lunge. “Go ahead. Hit me.” I looked straight at her when I said this.

  Brittany broke free and started hitting me again.

  “Hit me again,” I said through my tears.

  Britt flailed so wildly, it took Dan a couple of tries to grab both of her arms and pull her off. I remember thinking how strong she was.

  “I never struck her or called her a name,” I told Dan through my tears as I turned to climb the stairs. “She really hurt me.” As I started up the stairs, I realized I had to get out of that house. It was dark and cold, and I was trembling from head to foot. My head throbbed, and my heart was ripped to bloody shreds.

  “She asked for it,” I heard Brittany tell Dan.

  Gary and I packed quietly in the dark. I called my sister, one hand cradling my head, and described what had happened.

  “I was worried, Deb. Remember she called me a ‘fucking selfish cunt’ when I was last there? It’s the tumor, honey, and the meds.” Sarah cried softly on the phone.

  I couldn’t stop sobbing and shaking. My sister’s logical words didn’t erase any of what had just happened. Gary took the phone from my hand. “Sarah, we’re in a blackout. Can you call around and get us a reservation at a hotel that’s not in the blacked-out area of Portland?”

  Sarah called back with a reservation, and once again I tiptoed past my daughter’s door and down the stairs with my suitcase. I wept like I would never see my child again. I truly didn’t know if I would. This might be her way of severing the cord. Maybe between the meds and the brain tumor, this seemed easier than a tender goodbye. Whatever the case, she had hacked the invisible cord that bound us into a bloody stump.

  We loaded the car in the cold rain and drove to the hotel. The next day, we flew home to recover our sanity and decide how much, if any, of the last week of Brittany’s life we would be a part of.

  28