Advice for Future Corpses_and Those Who Love Them

by Sallie Tisdale

  I still find Jill’s odd missing day reassuring. It was a practical demonstration of what remains when the brain takes a hike. We may somehow still be present when we can’t control our bodies or take care of ourselves or make decisions. Attitude leads us—attitude, and habits of mind. I want to meet death with curiosity and willingness. What do you want to do? Do you want to meet death with devotion, love, a sense of adventure, or do you want to rage against the failing light? Cultivate those qualities now. Master them. Then you will have a deep and not even conscious attitude—a mastered reaction set, as it were, that stays with you even when the mind is going. When I find myself in a new situation, when I’m scared, I try to feel curiosity even in the midst of fear. I consider the bus sliding up onto the sidewalk behind me. I consider the heart attack. The meteor. Can I be curious about the meteor? Time is a plastic thing. If I experience curiosity in the midst of fear often enough, it will be there when I need it the most.

  Death will be full of surprises. Tibetan Buddhists practice dying through special meditations and visualizations, so that they will recognize the experience when it happens and not be caught off guard. They think of death as a long process, beginning before the body ceases to function and unfolding over days, weeks, even years. Tibetan Buddhism teaches that immediately after death, a person enters the so-called bardo planes, intermediate states after death and before rebirth. People who have been revived after clinical death do say they didn’t realize they were dead at first. The elaborate teachings given at the moments around death are partly devoted to telling a person that he has died. “Pay attention: you are dead!” say the exhortations. Pay attention! As peaceful as the dying body can seem, would we be surprised to discover this is a time of great chaos? We are undone. Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically. Being comfortable with surprise allows us to meet the unexpected, both in events and within ourselves. This curiosity will serve us well when there is nothing else to be done.

  ***

  When Perry was dying, a few people felt that he wasn’t competent to make important decisions for himself. In much the same way that we may think a murderer is insane by virtue of the act, a few members of Perry’s home care team felt that no mentally responsible person would do what Perry was doing. Why would you choose a death with, as one woman said with a grimace, such indignity? Why would you choose pain? We can think of a lot of pathological explanations for Perry’s choice. But most would be too simple. Illness has meaning, different for each person. It may be a punishment or a challenge or the natural way of things. It may be a terrible insult. Illness and pain always have meaning—sometimes dense and subtle meaning invisible to everyone else. The life leads to the death. What did pain and the unraveling of his body mean to Perry? I don’t know, but it clearly meant something important. He paid attention to it.

  Compassion means to suffer with another. To be at the bedside of a dying person means to suffer dying, in a way. But it also means witnessing while a person suffers their own suffering. We have the urge to act in loco parentis to the dying. We do this in big ways (“Of course you’re going to have surgery!”) and small (“Of course you want to eat lunch!”). We may ignore a person’s wishes, or label their wishes deviant when we don’t agree. I catch myself being parental in all kinds of little ways at the bedside. I want to turn off the television because I am not going to want to watch Judge Judy when it’s my turn and I think quiet is good for you sometimes. I don’t stop to ask if the person in bed likes Judge Judy. I want to open the curtains because I like sunshine. It’s easy to extend this to mood, food, pain, prayers. This urge can drive you to overwhelm a person with care. Do you just have to give that pill? Do you just have to serve that cup of tea? Are you trying, not to relieve a person’s suffering, but to take it from him? We can smother a person’s struggle with a cup of tea, and we can do it with opinions and ideals.

  My friend Carol spent a lot of time in the high desert of eastern Oregon, where herds of antelope live. Over many summers, she helped take down old barbed wire fences across rangeland. She saw that the antelope would come to a place where there had been a fence and stop. “It’s as though they assume the fence is still there,” she said. “Then suddenly they understand, and leap forward.”

  Carol and I talked on Christmas Eve. I had not seen her for more than a week, because a severe snowstorm had made the forty miles between us difficult. On our last visit, we had cleaned out her closet. She pulled on the skinny jeans she hadn’t been able to wear since college. “Nice to be thin again,” she said, “though I wouldn’t have picked this diet.” She spent a lot of time in bed by then. She loved the snow and didn’t mind watching the world turn white and clean. When I called, we didn’t talk for long, because she was having trouble swallowing again. “I’m very tired,” she said, and I could hear it in her voice. This was a new kind of tired.

  She had asked me to be her second health care representative after her husband. I went to her chemotherapy appointments with her and took notes when she met with her oncologist and got bad news. But when I asked her for details about the kind of wishes you would put on an advance directive, she wouldn’t answer. “It won’t be up to me,” she said. She was with Epicurus, in a way: chances were she wasn’t going to be aware that decisions were being made, so she wouldn’t tell me how to decide. I had to be satisfied with that. I did know her very well; we had talked about our lives and how we saw the world and nature many times, and I felt I knew what would be a good death for her. I could see her in the big bed in the bedroom in the house they’d built, looking out at the snow-covered fir trees that surrounded her. I could see her sliding into sleep. I knew it wouldn’t be much longer; I would have to visit as soon as the snow let me up the mountain.

  But. But Carol died two days later at the hospital, while a team tried to resuscitate her. She had difficulty breathing that morning, and asked her husband to get her help. David somehow got her through the snow, down the hill, to town. Her heart stopped in the emergency room and they started CPR.

  A quote from my giant palliative nursing textbook: “The use of CPR negates the possibility of a peaceful death. This is considered the gravest of poor outcomes.” Her death didn’t look the way I thought it would, the way I thought it should. For a long time, I felt that her death was unfortunate, emergent, and invasive. I was angry that she had died in bright lights and noise, away from home. It hurt, too, that her death had been away from me. For a long time after, I felt the wound of not having been there, of her not having the death I wanted her to have—that I wanted me to have with her.

  I do believe that CPR, like all kinds of supposedly life-supporting treatments, interferes with a peaceful death. But perhaps that is not true every single time. Is it possible to have a good death in the midst of desperately trying to stay alive? Once upon a time, I would have said no, not possible. And now I think: maybe, sometimes. I learned a lesson with Carol. Oh, what a hard lesson. I was selfish. I felt wounded by her death until I accepted what I already knew: Carol wanted to live, even when she was just about ready to die. It was her choice to go to the hospital. She knew she was dying and she chose to ask for help, to ask for everything. I had a fantasy about how Carol would die, a fantasy I didn’t recognize as such until it was extinguished by reality. But it wasn’t Carol’s fantasy. What she wanted was to live and she died trying to do that, and how can I say that wasn’t good? She chose it.

  She always said she planned to come back as a dolphin, but I think of Carol as an antelope now: stopping where there used to be a fence, and then seeing the way clear.

  All these deaths I’ve described can be called good deaths. The motorcyclist, who I discovered had gone to my daughter’s high school, who died the day before my son’s birthday in front of my house and more or less in my hands, was racing down a hill on a cool spring evening with his frien
d. He was riding his good bike. Afterward I read everything I could find about him. He had owned a construction business, he had loved to fish, he had really loved to ride that bike. They had climbed on their bikes, they had crested the hill, and in a second he was dead. Was this a bad death? I doubt he had seen it coming. He was here and then he was not, all at once.

  By most definitions of a good death, Perry didn’t have one. He was in pain and surely had unrelieved sorrow. Those who witnessed it—those who formed both the professional and the social components of his death—were in distress. He had almost no autonomy. But I think that what Perry was trying to tell us by refusing our well-intentioned care was that he had no other power. No power in the most fundamental sense; his was the molecular powerlessness of the body. He understood that death was making the decisions. The one choice that mattered most to him was the one he didn’t have: he had to die.

  All the planning and support and advance directives in the world won’t give you control. These are the things we cannot control: we are animals, our bodies fail, and we cannot stop dying. Perry saw a force much greater than himself. So I call his a death claimed, a death unhidden. A good death.

  4

  Communication

  A few months before Carol died, when she could no longer walk more than a few steps, she asked me to help her choose what she would be buried in. I found a small store that sold biodegradable coffins and shrouds. I went shopping, talked with the clerk, compared prices and decomposition times and delivery schedules. I brought back pamphlets. We talked about a muslin shroud versus hemp. Or maybe the willow coffin. Maybe the cardboard, because her friends could write on that one. Carol settled on a muslin shroud and a cardboard bier. They arrived a short while later in neat packages.

  I write that so calmly. I wasn’t calm. I hated that conversation. Carol was in a wheelchair in her living room, in the log home she and her husband had built by hand, beside the piano I sometimes played. The house was familiar to me, its smells, the sound of the dogs’ toenails on the floor, the creak of the staircase. We sat together and looked at the tall pines and the autumn sky. She, who had been invincible, was pale and cold. “I want the shroud,” she said. We talked quietly. No drama. Just one conversation among thousands. But I knew better and I think Carol knew better. Larry Hjort, an AIDS activist, gave counsel to people who were overwhelmed with the needs of their dying friends. “Everyone is perfectly adequate,” he said. “There are just some impossible situations.” How can we accept that we will die? It’s impossible! How do we prepare to lose those we love? The entire experience is ridiculous, hard to comprehend at times.

  She had not wanted to talk about any details since she’d finished chemotherapy. After all we’d done and said together in decades of friendship, we shied away from the pain of details at times. That day, we were talking about the world. About everything. We had different vocabularies, but we knew each other’s language fairly well. Such moments can take your breath away, moments when all excess and decoration is removed. I was in an altered state for hours. And Carol, of course, was in an altered state all the time. She was dying.

  If you are dying, you can say anything you want. You can say it when you want, and to whom you want. And you don’t have to say anything at all. Most of what I offer here is for the visitor, the companion, the helper. You have to follow some rules.

  Think about how you explain ordinary information: the washing machine is on the fritz, we’re out of milk, I got a parking ticket today. Then think about how you communicate more urgent news: I wrecked the car. The power’s out. It’s different. Consider how you react in an argument. That’s different, too. Do you shut down, stop thinking? Do you start to cry or yell or leave the room? We all have a pattern for difficult conversations. If you are going to spend time with a dying person, know how you handle emotional scenes. What scares you? What makes it easier? Make a list. Practice!

  Listening isn’t that complicated. It’s hard, but it’s not complicated. Few of us communicate really well. We think explaining ourselves is key, but listening is the most important part. Half the energy of caring for a dying person is listening, really listening. We are driven to think of ourselves first, and spend half the time appearing to listen while we prepare what we are going to say when it is our turn to speak. So: Listen. Say: This sounds very difficult. Say: I can tell how much thinking you’ve done about this matter. Say: Um-hmm. Tell me more. Keep bringing your mind back to the present moment when you stray. Invite detail. Ask questions and make it clear that you want to know. Anxiety makes it difficult to remember information, so repeat yourself if necessary. Speak in a calm and unhurried way. Reflect what you’ve heard, because you might have heard wrong: It sounds like you are saying you are afraid. Clarify, because you might have heard wrong: Let me make sure I understand. I think you are saying— If you can do these things, you are almost there. Be calm. Be nonjudgmental. Repeat.

  If you are spending time with a person who is dying, you become a protector. You are the defender of modesty, privacy, silence, laughter, and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.

  You will become a gatekeeper. Everyone needs a gatekeeper! Be the one who can say with a smile, Goodbye, Aunt Lucille. The one who can reach out a hand to the visitor and say, Time to go. We’ll call when we’re ready for another visit! while walking to the door.

  Visitors come in many forms. Lots of friends will just drop in for a cup of tea and a few innings of the baseball game and take the garbage out when they go. Hurray for those friends. But you may also meet what the writer Glennon Doyle calls the Fixer. This is the person who “is certain that my situation is a question and she knows the answer.” The Fixer is on the edge of her seat, ready with the solution. Doyle went through a difficult breakup, and so she also knows the Comparer: the visitor who only appears to listen, who is just waiting for the chance to explain how his experience, or his nephew’s experience, or his aunt’s boyfriend’s cousin’s experience, compares to yours. Sooner or later a visitor arrives with what I think of as one-downs-manship: the person with the sad face who spends their entire visit explaining why their troubles are worse than yours.

  Set boundaries—for visitors, but also for yourself. Start with setting the boundaries for the visit, and do this every time. Say, I can stay for an hour, or I’ll be here until dinner, when Mary arrives. Before you leave, tell the person when you will be back. This removes the uncertainty, the unbounded edges that can make for a stressful conversation. A boundary gives both of you a space in which to be together. If you’re going to be coming regularly, you might offer a frank contract: when you will be there, for how long, to do what. If you can’t stand daytime television, can you watch Days of Our Lives anyway? If you don’t like cigarettes, can you sit easily with someone who smokes? Don’t say: I told you to quit smoking.

  There are lots of ways to help besides making soup and sweeping the floor. (Those are often good things to do.) You can help people write letters or arrange a meeting. Offer to buy groceries or do the laundry, drive to an appointment or organize the bills. Offer only what you can deliver: I will stay with you through the night, or I will mail these letters for you. Be specific. (Then do what you say you will do. Not to put too fine a point on it, but you only get one shot at this.) Write all these things down and put it on the refrigerator. Your friend has enough to remember without keeping track of the calendar. Don’t say: Be sure to keep me posted.

  Ask permission for everything. Be aware that you have the power here. (Be willing to discuss this fact.) Ask permission until your friend says, Quit asking for permission. Ask if a person wants to talk before you plunge in with news of the day. Would they rather listen to music or play checkers or watch The Walking Dead? Do they want to take a shower? Do they want to eat something? If so, be clear. Vanilla or chocolate ice cream? is easier to answer than Is there anything you want to eat? Always ask for permission, but give permission,
too. Permission to be sad, to be angry, to be sleepy or bored. To be something other than dying. To die.

  Ask about privacy and confidentiality, favorite foods, how they want the room to be set up. Lights up, or down? Door open or closed? Music on or off? Agree on a signal for ending the visit. Know when to leave. Know when to be quiet.

  You have to be honest with the dying person, but above all with yourself. There is nothing else worth doing here. Honesty is generosity, because when you are honest, you offer what you can truly give. Be honest about your own emotional state, without burdening the sick person. Defend against your own impulses, your need for consolation, your wish for power, your urge for denial.

  Know your limits. You have to grieve, and that means you have to go away sometimes. If you are hungry or need a rest, take care of yourself. If you’re anxious or worried, admit it. (Just don’t ask your friend to fix your feeling.) There’s a tricky balance between keeping your feelings in check and being authentic. You may try to downplay things, especially tears and anger, but you don’t have to hide them completely. On the other hand, you may be surprised by jealousy, irritation, and loneliness, and these are really yours to sort out elsewhere. Don’t say: Why didn’t you call me first? Why did you tell her before me?