Wild and Precious Life

by Deborah Ziegler

  She selected poems written by Mary Oliver, her favorite poet, to be read to her in the minutes after she ingested the medicine.

  When we returned to the house, a hundred capsules were being broken open at the dining room table, and the powder was collected in a small glass. What little bit of hell it must have been to handle the medication. I hurried past, not wanting to see. I was grateful that I didn’t have to do it.

  Brittany was propped up high on pillows in her four-poster bed, writing cards. She handed me a card. I left the room to read it. This is the last thing my daughter wrote to me with her beautiful tapered fingers. The last thoughts that she shared with me.

  On the front of the card, there was nothing but the following quote:

  It’s not the years in your life that count, it’s the life in your years.

  —Abraham Lincoln

  Inside the card, she had penned these words:

  The quote on the cover of this card makes me think of the wooden sign in our Portland kitchen. They are words I truly believe to be true. Mom, I don’t have enough words to tell you how much I love you, how much of a huge loss we are suffering. Thank you for being such a wonderful mother. I love you with every cell in my body. I would do anything to make this pain go away and re-wind life . . . but that is not possible. So here we are coping like the strong, smart, caring women and family we are. MORE THAN ANYTHING I want you to be able to feel this pain but then let it go, travel, love Gary, seize each day of beauty on this gorgeous earth. I will find some way to be watching down on you.

  I will smile as your plane touches down in Peru.

  Love with every fiber inside me, your daughter

  Britt

  I wrote something for Brittany. I returned to her room and handed the note to her. People were carrying chairs into the room and talking in the background. In the note, I told her that I would find her . . . her light . . . that I’d know her spirit anywhere. I signed it “Godspeed.” Brittany read my note and carefully placed it in a giant Ziploc bag of cards and notes from friends and family. She looked at me quizzically and patted the area behind her on the bed. “Here, Momma.”

  I realized that this meant that I would have to sit with her pillow and head on my lap or chest as she died. She had talked before about Dan and me being on either side of her on the bed when she died. But Brittany wasn’t in the middle of the bed. I think my daughter was asking me to get behind her in a straddle birthing position, because the nightstand would have prevented me from having my legs to the side. I think she wanted her head on my chest. Maybe she thought it would be better not to see my face? I had never thought this through.

  I was not supposed to cry, but if I sat that close to her, she would feel me crying. Even now, I was praying that I could somehow cry silently, not wail loudly.

  If I sat that close, I wouldn’t be able to shudder, gasp, or tremble, or react in any way as my child left this world. I’d be sitting so close that she would be able to feel me disobeying her repeated order not to cry. I moved my head the tiniest bit, and my eyes must have answered. Brittany busied herself propping more pillows up and just said, “Help me write my goodbye on Facebook.”

  I nodded yes and pulled my chair a little closer to the bed.

  The blinds were open, and the late-afternoon sun shone through them. Five chairs were suddenly filled. Brittany looked around and said, “Where’s Gary?”

  “You told him he couldn’t come,” I choked out. “You never said he could be here.”

  “Go get my dad. We need another chair.” Brittany had invited several dear friends to be with her in her last moments. It comforted Britt to know that Maudie, a urologist, would know how to find her pulse and tell the rest of us when it was no longer there.

  Brittany wrote a goodbye post on Facebook, reading what she was typing out loud. We all listened.

  Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me . . . but would have taken so much more. Thank you to all those who have without hesitation helped me, been there, a shoulder to cry on (although rarely), it is more often a fellow smile to break into laughter with. The world is a beautiful place, travel has been . . .

  Brittany paused.

  “My greatest teacher,” I said.

  Britt nodded, typed, and repeated:

  . . . my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type. I love you Dan Diaz (my sweet, smart husband), my mother Deborah Ziegler (my selfless, giving example), Gary Holmes (best stepdad ever), . . . Goodbye world. Spread good energy. Pay it forward!

  “You are loved, Brittany,” I said as she settled her head on her pillow. There was an immediate response of “yes, yes” from others in the room.

  Someone brought a small glass with the prescription mixed in water. Brittany took the glass, looked at it briefly, and drank the medication in one prolonged swallow. She grimaced and said it tasted bitter.

  She ate a small bite of ice cream and then said, “Wow. This is going to happen fast.”

  Britt rested her head again on her pillows. “Tell me a good story, babe,” she said softly to Dan, who lay on his side next to her. Before Dan could get even two sentences into a story, my daughter settled lower on her pillow and snored once, very deeply. Someone handed me a laptop, and I read several of Mary Oliver’s exquisite poems in a shaky voice. I kept reading through tears as if my voice could keep Britt here, keep her with me.

  At some point, Maudie, who held Brittany’s pulse point, tapped me on the shoulder and whispered, “She’s gone. Her heart has stopped.”

  I set the laptop down and ran to the landing of the stairs outside Brittany’s room. I turned in a circle. “No . . . no . . . no . . . ,” I said. One of the girls tried to reach out to me. I said, “No. . . . No. . . . No.” I ran downstairs and outside into the nearby woods. It had begun to rain gently. My husband followed me. We stood under the shelter of the trees, and he held me as I wept and screamed.

  The sky wept. Brittany, my beautiful brave girl, passed away purposefully and peacefully, just as she planned. Death was kind, graceful even, and spared Brittany a great deal of physical pain and mental anguish. But in this moment, none of that mattered. Because selfishly I wanted her back.

  “I . . . WANT . . . HER . . . BACK!” I screamed at the trees, the rain, and the sky. “I want my baby back!”

  Gary helped me walk down the short stretch of road to the house. I looked up at the sky once more and climbed into the car. I never went into the little yellow house again.

  30

  Dust to Dust

  November 2014—October 2015, the First Year After Britt’s Death

  No person is your friend who demands your silence, or denies your right to grow.

  —Alice Walker

  I don’t remember one thing about the day after Brittany died. Nothing. I know I was in a hotel. I know Gary and my friend Sherri were there. I know that, but I don’t remember it. I have no recollection of that day at all.

  On November 3, we flew home. I remember feeling angry that I had to fly so soon after my child’s death. People in the airport looked as though they were on the other side of a watery glass pane.

  On Nov 4, I posted this on Facebook:

  I went to the ocean today and stood on the end of a jetty. I screamed two words until I was hoarse. “Why?” and “No.” The waves crashed back and forth with such regularity that I eventually heard the answers in my heart. “Why not?” and “Yes, it is true . . . she is gone.”

  The next day I wrote:

  All day today I kept thinking, like a child, “I want . . .” I want to spin the earth backward . . . I want my baby back . . . I want to talk to her again . . . I want this to be a bad dream . . . The wanting is endless.

  I arranged to continue the therapy I’d started in Oregon for patients
who have undergone high stress. It seemed to have a calming and positive effect on my thinking. The eye movement desensitization and reprocessing therapy definitely interrupted the cycle of images that kept replaying in my mind, and allowed me to see where I was stuck in an unhelpful circular thinking pattern.

  One of Brittany’s friends offered to set up a celebration of her life.

  When we went to spread Brittany’s ashes in the redwoods, I dropped to my knees in the dirt and scooped a tiny bit of her ash up and held it. My friend Sherri knelt in the dirt with me as Dan sprinkled some of the ashes beneath a stately redwood tree. I read the Mary Oliver quote I’d been asked to read. It was about loving a corporeal being, and letting that earthly life go when the time came.

  When I got up to leave, out of the corner of my eye, I saw a red fox darting through the woods, its thick white-tipped tail twitching as it leapt over underbrush, its black-tipped ears swiveling as though it could hear my sobs. I wanted to show Gary and Sherri, but when we looked back, it was gone. Whether I imagined the fox or it was really there, I took comfort from the image.

  Our brave niece, Erica, was still fighting for life. She was in the middle of what she called her “everything but the kitchen sink” chemotherapy treatments in Illinois and had already undergone multiple surgeries. Erica was in her thirties, and had two beautiful daughters. “Aunt Deb,” she wrote, “I’m going for quantity of life—not quality. I’ve got girls to raise.” (Erica fought valiantly at great personal cost, and thankfully she is living and loving her girls at the writing of this book.) On January 9, Gary’s brother had an emergency heart transplant in Dallas (and he is also doing well).

  I will never again ask the universe, “What more can happen? How much more can this family take?” I keep those words locked in my throat, or at worst jammed behind clenched teeth. When life falls apart, sometimes we cannot solve or surmount the problem. Sometimes the falling apart is not our problem to solve. Sometimes when we feel that we “deserve” an answer, that we “deserve” a miracle, we make everything worse for ourselves and others who are hurting.

  When the ground shakes beneath us, when answers evade us, when we hold out hope when there is none, we rob ourselves of the moments that we do have left. If I could do anything again, it would be to try to have more of those seconds, minutes, and hours with Brittany where we both quietly accepted the script that life had given us and just softly lived with that knowledge. When we just looked about ourselves and soaked in the beauty around us in those precious instants of time that we were given, instead of wasting precious life with worry, terror, and false hope.

  I’m amazed and proud that we were able to grasp any of the love and joy in her season of death. It is only because of my daughter’s brilliance, stubbornness, and wisdom that we did. She planned the last months of her life. She tried valiantly to experience times of harmony and beauty in the midst of fear and terror. She requested that we visit places in nature that would allow us to get used to the idea of her death and would provide a distraction so we could focus on texture, color, light, and movement. We could feel flashes of unadulterated joy. All of this was possible because of the Death with Dignity law in Oregon. We were able to appreciate some respite from the never-ending thoughts of death because Brittany had a plan. She had options that made her feel safe enough to enjoy some parts of her remaining days. Without this law, we wouldn’t even have had those fleeting moments of peace.

  In this time of mourning, the wonder of Brittany’s determination did not escape me. Even with a giant tumor, in the face of death, she was able to do such careful planning. I marveled at her resolve, her fortitude, her capacity for understanding—even as her brain was being altered by both disease and medication.

  Only two days after Brittany’s death, the Vatican’s top ethicist, Monsignor Ignacio Carrasco de Paula, condemned my daughter’s death. “Assisted suicide is a reprehensible absurdity,” said the man from a religion my family didn’t adhere to, who knew nothing of my daughter’s diagnosis or struggle. “Brittany Maynard’s gesture is in itself to be condemned . . .” Ignacio said to Ansa, the Italian news agency. Then on Saturday, November 15, Pope Francis threw out his two cents’ worth, saying that the right to die movement was a “false sense of compassion” and a sin against God and creation.

  This was a tipping point for me. It wasn’t just the Catholics; other religious institutions had made inappropriate, cruel, and harsh statements about Brittany’s choice. I wrote a general response:

  I am Brittany Maynard’s mother. I am writing in response to a variety of comments made in the press and online by individuals and institutions that have tried to impose their personal belief system on what Brittany and our family feel is a human rights issue.

  The imposition of “belief” on a human rights issue is wrong. To censure a personal choice as reprehensible because it does not comply with someone else’s belief is immoral. My twenty-nine-year-old daughter’s choice to die gently rather than suffer physical and mental degradation and intense pain does not deserve to be labeled as reprehensible by strangers a continent away who do not know her or the particulars of her situation.

  “Reprehensible” is a harsh word. It means: “very bad; deserving very strong criticism.” Reprehensible is a word I’ve used as a teacher to describe the actions of Hitler, other political tyrants, and the exploitation of children by pedophiles. As Brittany Maynard’s mother, I find it difficult to believe that anyone who knew her would ever select this word to describe her actions. Brittany was a giver. She was a volunteer. She was a teacher. She was an advocate. She worked at making the world a better place to live.

  This word was used publically at a time when my family was tender and freshly wounded. Grieving. Such strong public criticism from people we do not know, have never met—is more than a slap in the face. It is like kicking us as we struggle to draw a breath.

  People and institutions that feel they have the right to judge Brittany’s choices may wound me and cause me unspeakable pain, but they do not deter me from supporting my daughter’s choice. There is currently a great deal of confusion and arrogance standing in the way of Americans going gently into the good night. I urge Americans to think for themselves. Make your wishes clear while you are competent. Make sure that you have all the options spelled out for you if you are diagnosed with an incurable, debilitating, painful disease. Do your own research. Ask your family to research and face the harsh reality with you. Ask your doctor to be brutally honest with you. Then make your personal choice about how you will proceed. It is YOUR choice.

  The “culture of cure” has led to a fairy-tale belief that doctors can always fix our problems. We have lost sight of reality. All life ends. Death is not necessarily the enemy in all cases. Sometimes a gentle passing is a gift. Misguided doctors caught up in an aspirational belief that they must extend life, whatever the cost, cause individuals and families unnecessary suffering. Brittany stood up to bullies. She never thought anyone else had the right to tell her how long she should suffer. The right to die for the terminally ill is a human rights issue. Plain and simple.

  Debbie Ziegler

  Brittany’s Momma

  The letter was read in its entirety on The Last Word with Lawrence O’Donnell on MSNBC. Then other media sources picked up the story. The message must have struck a chord with some people. Headlines with words like “Mother Lashes Out at Vatican” or “Mother Delivers Sharp Response to Vatican” spun the story further.

  On November 18, the day before what would have been my daughter’s thirtieth birthday, my sister Sarah and I decided to get tattoos in honor of Brittany. They would be on the instep of our right feet and say, “Be soft.” Mine would have Brittany’s birth date, and Sarah’s would have the day of her passing. It was our way of honoring Brittany.

  I had to remind myself every day not to let Brittany’s death harden me and turn me into a bitter woman. I knew that she wouldn’t want me to let losing her destroy my love for the beau
ty of the world.

  Sarah came again with her husband and daughter for Christmas. Christmas without Brittany. It seemed all the joy had been sucked out of the holiday. Brittany, who only last year had decorated her house to the nines, was so very, very missing. My child had chosen three Christmas gifts for me before she died. I opened them, and then ran into the hall to lie on the floor and cry.

  The first gift was a pair of shoes with “live your dream” printed on them. Brittany wrote a note with the shoes, telling me that she hoped that I’d wear them to Machu Picchu one day. The other gift was a long, soft pink shawl. Woven into the fabric was white lettering that said, “Dear Mom, I love you more than words can express. Your love and devotion has made me who I am today. Thank you for not only being my mother but also my friend. I feel so proud and blessed to call you MOM. I love you today, tomorrow and forever! XOXO, Me.”

  The third gift that Brittany selected took a while for me to understand and accept with joy. She ordered one year of “fruit of the month” to be delivered to Gary and me. The first time I found a box of fruit on the porch, when I saw that it was from her, I dropped to my knees. Inside the box, nestled in separate compartments, were pears from Oregon. Our trip along the Columbia River Gorge came rushing back to me. Each pear was huge, and one of the nine pears was wrapped in gold. They looked like giant pink-tinged tears. The fruit inside was so juicy, you could eat it with a spoon. I couldn’t swallow the fruit. It was still too alive with her touch. My girl didn’t want to be forgotten—as if that were possible. Her gifts stretched forward into the future, bringing her love in such a tangible way to my door every month.

  From mid-January onward, Gary and I did what we could to testify on behalf of California’s proposed End of Life Option Act, drafted and championed by two amazing Californians, Senator Lois Wolk and Senator Bill Monning. We donated money and time to the cause.