Wild and Precious Life

by Deborah Ziegler

  “Lie down on your side.” I tried to urge her to use the seizure protocol.

  “Stop telling me to do that. I don’t want to.” Her eyelid fluttered, and fear ran through the two of us, much like the uncontrolled electrical brain activity causing Britt’s convulsion. We were terrified of what a seizure might suddenly take away. Speech? Choice?

  Jen and I knelt beside her as the fluttering eye was followed by rippling facial muscles, the tensing of her body and curling of her hands. Thankfully, this time it was a mild seizure. Jen sat talking with Britt as I finished preparing the meal.

  We had a quiet dinner, and everyone headed to bed early. The next day, Britt and Jen were like children again, hiking through a peaceful rain forest to tide pools filled with purple and ocher starfish. Brittany called out, just as I’d hoped, for us to come. Come see the forest of delicate pink and green sea anemones!

  Our week in Washington turned out to be a time of beauty and acceptance. Each evening, I went outside and collected raspberries, listened to the birds, and felt grateful for these peaceful days with my child.

  The young video director from New York arrived soon after we returned from our trip. Her small crew filmed Brittany, Dan, and me talking about Brittany’s choice. The filmmaker seemed to have her heart in the right place. She wanted to find a nonprofit organization to finance the film. Britt and I thought she was spunky and bright, and might put together a film that could educate Americans about the need for terminally ill citizens to have choices.

  The next thing we knew, People magazine wanted to do an article. They sent a photo crew and did the interviews by phone. The photographer was gentle with Brittany, who now abhorred having her photograph taken. When Brittany broke down in tears, telling them she didn’t look like herself, that she felt fat and ugly, he told her that he, too, avoided being photographed. There was only one photo that he allowed his wife to post, of half of him—the other half behind a column.

  The photographer stood Brittany in the doorway. She was composed, and stared directly into the camera. He also took pictures upstairs near Brittany’s beautiful bed, sun streaming in. He photographed the four of us in the backyard. The day seemed endless, but Brittany felt the article would help to educate readers and policymakers.

  In mid-August, Brittany had another MRI. The Portland doctors expressed some good news (if you could call it that): Britt still had space in her cranium. Severe intracranial pressure was not yet an issue.

  Britt asked why her symptoms were steadily getting worse, her seizures more frequent and debilitating. She pointed out that she’d lost intelligible speech for over half an hour after a recent seizure, and she’d feared her speech would never return.

  “What if I lose the ability to self-administer the medication? What if, after a bad seizure, I have difficulty swallowing? I need to be careful not to wait too long, or I’ll lose what I’ve fought so hard for.” She looked around the room. “My right to die peacefully.”

  She pressed her eyes to emphasize the excruciating ocular pain. “I can’t sleep because of pressure and pain at night. I’m an insomniac.”

  Britt looked at the doctor. “If pressure isn’t an issue, why are my symptoms getting worse?”

  There was silence in the doctor’s office while everyone thought about the dichotomy. My heart squeezed into a hard ball of fear and pain.

  “I know, right here,” Britt tapped her heart, “that I’m getting sicker with each passing day. I am actively dying. I’m staying with the date to die that I penciled in with my therapist. November 1.”

  This visit to the doctor unleashed a steady flow of rage when we got home. Brittany became verbally abusive. The anger could be about who ate the last yogurt, or something someone said on Facebook. It could be over how long it took me to do a simple task. “I could do that faster, and I have a brain tumor,” Brittany said. “Do I have to think of everything?” she asked me. My slow, grieving brain irritated both of us. Although I knew the anger was at the universe, often my name was attached to it. She didn’t rage at friends; generally the anger was directed at her husband and mother. Didn’t that mean she could control it, that she was choosing to punish us? Only in researching this book did I find out that aggression, agitation, and combative behavior can be side effects of antiseizure medications.

  One of Britt’s girlfriends from middle school was coming, so I booked massages for them. I’d ordered heavier curtains for the kitchen to block the August sun. I continued to order T-shirts that said things like “I Am Love” and “I Am Peaceful,” hoping that if we wore these messages, we would somehow feel these feelings. I was trying.

  I kept the house clean, did the laundry, cooked meals, and suggested outings to amuse Brittany. But in the heat, window fans whirring, nothing appealed to her. Britt spent her time writing and rewriting her obituary and finalizing detailed plans for her funeral. She kept handing me new versions to read.

  I was hurting, and it was hard to keep standing like a donkey in the rain of insults. It seemed I could never do anything right, say anything right. It was as though my very appearance sickened Brittany. And damn it, there was still unhelpful, godforsaken hope pushing at the edges of my consciousness. What if the tumor is slowing? It was as though Brittany could read my mind, and it infuriated her.

  Gary, who’d flown home to check on things, called to say I was needed. Daddy was transitioning again. He now needed an electric hospital bed. He was so weak he couldn’t stand, and he was getting combative. I needed to put new resources in place. Gary had booked a ticket for me to go home on August 14. However, Carmen, Dan’s mother, fell in the night while caring for the dogs at Dan and Brittany’s house. She was taken by ambulance to the hospital, and they were checking her out. Dan felt that he needed to go home and check on his mother, and I agreed with him.

  At breakfast I said, “Go. I’ll change my flight and stay with Britt.”

  Brittany launched into a tirade. The things she said to Dan turned my stomach. I thought, Caring for Brittany, which in part means being her punching bag, is hard. We all need breaks.

  Finally, I couldn’t take any more. I stood up. “Stop it, Brittany. I will not listen to you talk to your husband this way for another minute.” I held out my hands. “Carmen is his mother, and she’s in the hospital. Let him go.” I turned on my heel and left.

  “Stay out of it!” she shouted. “It’s none of your goddamn business!”

  Gary spoke with Dan on the phone and encouraged him to go see his family. “Breaks are important. Take a few days. I’m going to be driving up a second car. That will give us more freedom. I’ll drive to Oregon while you’re visiting your mother.”

  Dan flew back to visit his mom in the hospital. We thought we had a good plan. Everyone was sure that Britt would come around.

  But Britt refused to budge. To her, one of us taking a break was the equivalent of abandonment. On the phone, I heard her giving Dan hell. “Why do you need to stay an extra day to take care of things? I’m dying! Why isn’t being here with me your first priority?”

  When she hung up, I said, “Brittany, right now you’re very angry. But you have little time left on this earth. Don’t use it up in this destructive way.”

  “I want you to take me to an attorney. I want a divorce,” Britt said while working on her laptop. “Momma, I don’t want to die married to Dan.”

  “You don’t mean that, Britt.” I sighed.

  “I’m so fucking tired of you taking his side on things.” She stormed up the stairs.

  I contacted the social worker at Oregon Health and Science University and described the level of animus that Britt was showing toward me and Dan. She wanted to set me up with a therapist. Now, in hindsight, I wish that a doctor, any doctor, had explained the many ways that a brain tumor can alter a person’s behavior.

  We live in a world where medical care is rushed. Death is not something most physicians are comfortable discussing, much less the journey the patient will take betwee
n diagnosis and death. In fairness, everyone’s passage from life to death is different. Doctors, even brain specialists, are trying to spend a minimal amount of time with each patient because there are more patients waiting in the lobby. Sometimes a complex health issue can’t be explained in a series of fifteen- to thirty-minute appointments. I found myself wishing that the doctors had more time, or that they had at least handed us literature about brain tumors, a CD to view on the basics about the treatments available, and a video about the possible side effects of common medications and how to best deal with them.

  Shouldn’t some sort of counseling and training be recommended and made available to families that are caregiving for a loved one who is terminally ill? In the medical model that we have now, the limited time that doctors have is focused on the patient, as it should be. However, this leaves families untrained and unprepared for their caregiving role. Our whole family was ill, not just Brittany. We all tried to care for Brittany to the best of our abilities. But neurocognitive changes are tricky. Brittany experienced negativity, depression, and anger, along with aggressive and impulsive behavior. In many ways, emotional changes in both Britt and those who loved and cared for her were the most difficult things to deal with. Seizures were frightening, but so were the emotional outbursts.

  In the end, it seemed to me that each family was left to deal with death essentially on their own—no matter how their loved one was dying. My father was on hospice care for a year, and I felt just as alone and in the dark with him—though in a completely different way. It occurred to me that no matter how we die in the American medical system, not enough is being done to educate us on that process.

  If I’d spoken up to Brittany’s doctors, she would have shut me out of attending any future medical appointments. If I’d dared to say anything about her rage, it would have been viewed as the ultimate betrayal. Of course, doctors were not really at liberty to speak to parents of adult patients in secretive phone calls. And there was little on the Internet about the behavior of brain tumor patients as their tumors grew. Those who knew probably didn’t want to relive it by writing about it. Gary and I did a great deal of reading, but we were still ill-equipped to deal with our daughter’s complicated health problem.

  After Brittany’s death, I read an article written by the husband of a cancer patient who described his wife’s behavior near the end of her life when Dilaudid, the medicine Brittany was taking, many times stronger than morphine, interrupted signals between his wife’s mind and her body. I wept as I read his open and honest account of lying down next to his wife and having her tear into him for hours, her rage fueled by fear, drugs, and disease. He wrote of how she only wanted to eat mayonnaise, of how he feared he would end up worn-out and dying himself while she screamed at him for more mayonnaise. I cried for him, his wife, and their devoted friend; but I also cried because it was the first account I’d read that captured some of the chaos and pain I’d experienced in caring for Britt. My tears were an odd combination of sorrow and relief. I wasn’t alone (http://www.esquire.com/lifestyle/a34905/matthew-teague-wife-cancer-essay/).

  Before I could set up an appointment with the therapist, Britt’s friend Maudie flew in. It would be a quick visit, as she needed to get back to her urology practice post-honeymoon. I was happy to have her company. Perhaps Brittany would stop cursing at me for a few days.

  Britt rode shotgun. Maudie sat in the backseat when we picked her up. The two girls chatted away.

  Britt jabbed my arm. “Mom, where the hell are you going?”

  I pointed at a sign telling us we could get on the highway.

  “Make a damn U-turn. After all this time of going back and forth to the airport, you still don’t know where you’re fucking going?”

  “But the sign says . . .”

  “Fucking turn around!” Brittany shouted at me. “Fucking turn now!”

  Tears burned my eyes. I was so humiliated. “Welcome to Portland, Maudie,” I said, looking over my shoulder. I drove home without saying another word.

  Although I needed to stay in Portland to look after my daughter, I decided to take a break while Maudie was there.

  When we got to the house, the girls wanted to go out to eat. I told Brittany, “Here are the keys. Maudie can drive.” I added, “I won’t tolerate being cursed out anymore. From now on, if it happens, I will remove myself from that environment.”

  “Oh yeah, let’s make this all about you, Momma. That’s a good one,” Britt yelled at me as I climbed the stairs.

  While the girls were gone, I moved my desk upstairs to my bedroom. That way, I could email without crossing paths with Brittany. I was hiding from the rapier-sharp edge of my daughter’s tongue, at least until her friend had to leave.

  The next morning, the girls took a hike on nearby trails. That afternoon they invited me to join them for dinner, but I passed. I stayed out of sight, giving them the run of the house.

  On the morning of August 16, the girls went to Trillium Lake. The news was all about Robin Williams, who had committed suicide five days earlier. I couldn’t imagine a person who brought so much laughter into the world being so very sad.

  I had no car, but I had a quiet house to myself. I decided to do all the laundry. When I went to get clothes from the dryer, I found myself studying the huge beams in the basement. I thought about how they’d been there for almost a hundred years; how perfect they were for someone to hang herself from. The thought just popped into my mind, along with wondering what kind of wood they were made from. Just an ordinary thought.

  Each time I made a trip to the basement, I thought a little more about the beams. They weren’t that high, but high enough. I looked at some rough rope that was stored in the basement. What about leather? These thoughts arrived without my feeling a faster heartbeat, without sweat beading on my upper lip. When I put the clothes away, I looked in Gary’s closet at his belts. Gary called. I told him that I was letting Britt have time with Maudie, and that I was staying in my room when they were at the house.

  “I’m on my way, sweetheart. Hang in there,” he said.

  I hung up, thinking how funny his statement was, given what I’d been thinking about. I decided to take my little CD player outside to listen to music while lying on the picnic table bench. Sunshine might do me good.

  I didn’t hear them arrive.

  Above the music, I heard Britt’s voice yelling at me. I turned the volume down and sat up. She was standing on the back porch with a glass in her hand.

  She started telling me what a psychotic bitch I was. How embarrassed for me she was that I wouldn’t join in meals or activities with Maudie. “My friends think you are completely losing your shit,” she told me, now pacing the length of the porch. I let her rant for a while, and then I spoke loud enough to be heard over her grinding insults.

  “The truth of the matter is that I’m your mother and I love you, will always love you, but I won’t tolerate your abuse.”

  Brittany stopped walking back and forth, and looked at me as though I was the vilest creature she’d ever set eyes on. “Well, yes, motherhood. We all know you didn’t knock that one out of the ballpark.”

  Wow. That was a knife to the gut. I lay down again, my face turned up to the sun.

  “Get out! Get out! You cannot come to my death! You will not be on the list for my funeral!” I heard her screaming, but I could no longer see her angry face. Tears rolled into my ears, creating a horrible sensation. Strangely, all I could think of was my ninety-two-year-old father singing a country song about “lyin’ on my back, cryin’ over you.”

  “I don’t want to see you until October—if ever again at all!” Brittany raged on. “My friends think you’re psychotic. And by the way, you are never allowed to correspond with my friends. Get your own fucking friends!”

  Gary would arrive later that night. I told myself I could make it until then.

  Gary had no sooner stepped in the front door than Britt jumped on him.

  “Why ha
ven’t you been answering my texts?” she snapped.

  My husband held up his hand. “That tone of voice may work with everyone else in your life, but it will not work with me, young lady.” He went to find me upstairs.

  “Why didn’t you answer my texts?” she asked again more loudly.

  Gary stopped and turned around. “I don’t ask how high when you say jump, Brittany.”

  “You’re just a frickin’ enabler!” she shouted at Gary’s back.

  After listening to me recount the last few days, Gary got out his laptop and booked me a flight home the next day. “You’ve got to get out of here. I’ll take Maudie to the airport and stay here with Brittany.”

  My husband’s expression was grim. I touched the side of his face, looking into his blue eyes.

  “Honey, I think Britt would like you to get so depressed that you decide to go with her,” he said.

  I bent my head and sobbed. I admitted my thoughts about the rafters.

  Gary pinched his nose, and his eyes watered. “Look. I’m not a psychiatrist, but it seems to me that the people she loves the most are also the ones she hurts the most. Maybe it’s a way of detaching from you. If she’s angry with you, it won’t be so hard for her to leave you.”

  That night, I wrote my two sisters the following email:

  I have been kicked out. Told to “get out” repeatedly. I am “probably disinvited from her passing.” Strangely, this latest intense level of verbal abuse was instigated when I took umbrage at being cursed out in front of company. I did not back down. I expected an apology and some indication that these cursing binges leveled at me would be controlled. I know they can be controlled because ONLY Dan and I get this level of abuse. I received no feeling of remorse, no indication that there would be an attempt to change the behavior. When I removed myself from the open shooting range, I was told that Britt’s friends had diagnosed me on the verge of a psychotic breakdown. So, I leave tomorrow. Gary will stay until a friend or Dan arrives.