“We have to tell Dr. A tomorrow that we’re ready,” I say.
David gets up to call his father and stepmother, his mother, his sister. In addition to talking about it with each other, Dr. A has said we need to find out how our family members feel before taking any action. I lie on the couch listening to David on the phone, explaining. When he gets off, he tells me everyone is in agreement it’s for the best. He says they sounded relieved that a decision has been made. David’s mother had to make a similar choice for her own mother a few years before. Awful as it is, we are in intellectual agreement.
My family, I know, will also be in intellectual agreement, but still I hesitate to tell them. My mother especially. I hesitate even though I know she was there for all those family dinner table conversations in the 1970s when Karen Ann Quinlan was lying in her coma. All through my grammar and high school years, Quinlan appeared in the paper, her sober smile and smooth brown hair parted in the middle, Quinlan held up as a reason not to get carried away at parties. Thanks to this girl whose parents fought for the right to remove her from a ventilator, I have been able to make this choice for Silvan. Thanks to her, I know that my mother also does not believe in pushing life beyond reason. My mother has even given me a copy of her own living will and granted me power of attorney and had me store these documents in case I need them in a similar situation for her someday. Still, I hesitate because I dread her suffering. “Pretend that you are Christian children,” my mother used to say in despair at our unwillingness to sacrifice, to suffer for our siblings. Her refrain was more confusing than my father’s line about nothing being fair in life – for we were Christian children; no matter how much we sinned, we had been baptized. But I know that somehow she equates suffering with love, and through her own suffering she hopes to carry ours.
In fact, her suffering for Silvan began before he was even born, when he was barely visible as a swelling of my belly. There we were on her deck having lunch – egg salad sandwiches and cucumber salad – and she was arguing with David about the baby. Though she had loved our wedding ceremony, though she’d found so many things that the renewal rabbi said reminiscent of Christianity, she was shocked that our baby would not be baptized; she even had a baptismal gown ready. Why did David’s Jewish background “trump” my Catholic? When David pointed out that it was possible to be a non-practicing Jewish atheist but not a Catholic one, that baptism is religious, not cultural, she said, “But what if the baby dies and ends up in limbo?”
“Maureen,” David asked, “why would the baby die?”
“Babies do still die, you know,” she said
“But the chances of that happening…”
“And what about David,” I broke in. “Do you think David will go to hell?
“Oh, no,” my mother said, shocked, “because David’s such a sweetheart.”
I want to call and remind her of this. I want to say that Silvan is a sweetheart. That he will go to heaven whether he is baptized or not. I remember how I used to add, as a child, the addendum to every prayer “… or whatever You think is best.” In this way, I’d tried to preserve my faith from the shock of not always getting what I wanted. Does she not know such tricks? She must be wondering how God can do this to us after all we have lost as a family. She must be hoping that through her own suffering she will be able to lessen my own. “It’s not fair,” I say out loud. It feels so good to revert that I say it again, shouting into the sofa cushions, “It’s not fair, it’s not fair, it’s not fair.”
A Choice
THE NEXT DAY FINDS US ALL TOGETHER IN THE HALLWAY, my mother, my brother Kim, David, and me. It seems as if my sister Katya must be there as well, but she is still far away in Brazil. Only five days have passed since Silvan’s birth, but it feels much longer. So then it is the four of us in a knot in the hall. I need to tell them. It’s a peculiar position, and yet not as uncommon in the modern era as one might think. Medicine, which used to be the practice of keeping people alive long enough for nature to heal them, became in the twentieth century a success story. Medicine can now cure people. And in the twenty-first century, medicine has progressed to a point that most people in the United States no longer die of a disease. Instead, most people die of a choice to stop treating whatever diseases they have. Difficult as it is to choose death, every day people have to choose – for themselves, for parents, spouses, siblings, and even for children.
So we stand there in the way of other parents going to scrub their hands free of germs, in the way of nurses and doctors, in the way of gurneys with babies on them being pushed from one room to another, feeling wrong. For though people are making this choice every day, hope is still what we expect from medicine, and choosing death seems a failure. So we stand awkwardly, trying to begin. Just then the social worker appears at my side. Ever since we met for the first time in the Bad News Room, she has seemed strangely ineffective, hesitant, like a passing stranger sucked unwillingly into someone else’s drama on her day off. “Couple treats each other tenderly,” she has written in her notes, so we know she’s watching us, making sure we’re equipped to deal, but we’re unsure how equipped she is herself. “Is there anything I can do to help?” she says now, looking scared because when we decline her help, as we always do, she will be at a loss.
But this time there’s something concrete she can do. We need somewhere to talk. Without her. Perhaps in the privacy of her office. She hesitates, then decides she can do this. We file in, settle in a circle. She leaves, closing the door behind her. Alone together, I tell them, “We have decided to remove Silvan from all life support: oxygen, food, liquid.” Everyone looks grim, gray, shocked, as if we ourselves are the ones receiving the death sentence.
David tries to explain the diagnosis and prognosis. Even if Silvan survives his coma, he will be damaged beyond what they’ve ever seen, bedridden day and night, unable to control his limbs, his saliva, his mind. He might grow to look as if he has an inner life in the way he writhes and moans, but the brain scans suggest he won’t actually have a life beyond his brain stem. I explain that, if we kept him alive now in the misplaced hope that somehow he might regain more of his brain function, we’d have to cross this bridge over and over each time his body tried to die. Kim is nodding and fighting tears. He will tell me later how the shock of this loss seemed to enter him and join to all his other losses and begin to shake him to pieces.
But my mother doesn’t seem really to have heard us yet.
In addition to the distant look in her eyes, my mother is wearing a windbreaker so worn, so scudded with white, so threadbare and diaphanous, that its original color is a mystery. In clothing such as this, she was mistaken once at her church for a homeless woman instead of a volunteer come to help the homeless. She still dresses well to teach, but she is slowly retiring, and every few months it seems, she threatens to leave us all for the nunnery where she can do “more good” praying for the world than she can by living an ordinary life amongst us. How she suffers on behalf of others. How generous and not materialistic. How strong she has always been, raising four children, foster parenting, teaching full time, nursing the ill, grieving the dead, not at all afraid of death for herself; and how weak as well for not being able to bear the pain of others – as if it is her job to bear it for us. What is she thinking now with her eyes on the middle distance? Is she praying for some sort of miracle? What miracle would that be?
YEARS LATER, MY mother will explain. “No one was helpful to me. Everyone had a story for me, but they were all stories of hope,” and she will give me a few examples from letters sent by friends: “He was not expected to live, but now he’s a strapping young man going off to Oxford…” or “Caretakers come to learn something from such damaged children and feel that they are here for a reason…” Years later, she will say she still sometimes wonders if she could’ve prayed hard enough for a miracle.
My mother is at a loss. With no one to talk to her about accepting the death that she has been worrying about since b
efore Silvan was born, she doesn’t know how to talk to me about it. I know she will accept my choice. My mother, for all her suffering, is entirely supportive. It is not that she is meek or overindulgent. She certainly speaks her mind. It is only that she knows where the line is between loving and controlling her children. Perhaps she only wants to make sure I am solid in my choice. Perhaps she wants to make sure David and I have considered more than one opinion, just as she has, allowing herself to be buffeted by opinions, trusting that only out of confusion can a solid choice come. As her eyes return to the room, she begins to pepper us with questions.
“How do you know the prognosis is right?” she asks first.
We tell her we can’t know for sure, but for us to gamble otherwise seems unfair to Silvan.
“And what if someone else were willing to care for him?”
“Like you?”
“Like me,” she says, “though I don’t how long I’ll still be alive.”
“If I thought he should be kept alive, I would do it. He’s my son.”
“Of course he is,” she says.
“If Daddy were here,” I say, “he would agree with this choice.” Kim and my mother both looked startled by this entry of the dead, but it feels just right to me. Here comes my father, deep with feeling but strong and calm. If only he were here, he and my mother could go home together and talk this out together. Instead, I explain on his behalf. “You and Daddy always said you’d never want to live as vegetables.” Kim looks surprised. I suppose that, being ten years younger than me, by the time he was ready for adult conversation at the dinner table, the topic was no longer Karen Ann Quinlan and the line between life and death; or the conversations he remembers are the ones that have been useful to him as an adult. As with all siblings, our stories of growing up in the same family are different. Or perhaps it’s simpler than that. Perhaps additional dead family is more than he can handle right now.
“But that was us,” my mother says now. “We wouldn’t want to live that way.”
“So why should Silvan have to?”
She looks abashed.
“You could even say God called him and we are preventing him from going,” I say. “After all, he was revived after birth. Maybe that was playing God when God really wanted him to die then. In fact, he’s been revived several times. He keeps trying to die and we’re preventing him.”
“You could say that,” she says, but she still looks worried. She chews her nails so loudly I can hear it across the room. I say, “Stop chewing your nails,” and she looks up startled, then laughs. She takes her duty to do good very seriously but she does not take herself too seriously. David thinks this means she will eventually laugh at her own “neurosis” about Silvan’s soul, but I don’t. I know that if she can’t save Silvan’s life with prayer, she will at least want to save his soul.
Confirmation
THAT AFTERNOON, I CALL FATHER B FROM HOME WHILE David stays at the hospital with Silvan. What we are doing for Silvan feels compassionate, what we are doing is not euthanasia, but I wonder if my mother feels the distinction. This is important because I know the Catholic Church agrees with the government: it is against euthanasia. I know this with all the visceral weight of discovering it on my own, one foggy afternoon in San Francisco when I was in high school. For some reason, I had chosen euthanasia as my topic for a school report. Because of Karen Ann Quinlan and those dinner table conversations, I knew there was controversy about what Quinlan’s parents had done. I thought what they had done was euthanasia. I assumed this meant the church was for it and the legal system against it and I was feeling righteous about the church’s loving stance. Certain of my case, I set out after school for the Catholic bookstore to research my topic. A middle-aged woman in a gray cardigan helped me to a slim pamphlet, and back out on the street, I caught my bus where the only thing I gleaned from the dense pages was the Church’s condemnation of what I’d thought they would champion. I sat there in my itchy, wool school uniform in shock. The church was against what I thought of as linked with only positives: compassion, acceptance of the inevitability of death. In my dictionary, the first definition seemed to agree. “An easy death,” the dictionary said, as if anyone could argue against that.
I soon had a chance to argue the issue beyond the abstract, to experience its true complexity. A girl in the youth group I attended Sunday nights at my church had an accident and fell into an irreversible coma and her parents chose to remove her from life support. At the end of the week, the breathing tube would be removed. The novitiates who ran the youth group presented this as a reasonable and loving option, a Catholic option, and this confused me. Hadn’t I just done a school report in which I had to say that the church was against euthanasia? I still hadn’t understood the distinction between euthanasia and allowing someone to die. Even more confusing was the fact that until this day, I’d never liked this girl. Kirsten had swishy blond hair, giggled constantly, and attracted every boy in the room while never once looking at me. But hearing she might die, I wondered if God were testing me. Perhaps Quinlan’s parents had been wrong after all, perhaps Kirsten’s parents were wrong. Perhaps the church was wrong. Perhaps they had all lost faith in the miracles of saints.
The week Kirsten was in her coma I struggled towards the peak of my religious faith. I wondered if this was God calling me at last. Each night in bed, I ran through my fantasy: running past hospital security, reaching Kirsten’s bed, putting my healing hands on her. But always I felt the same discomfort when she opened her eyes. If I didn’t even like her, how could I hope to heal her better than the parents who loved her? At last the day came, life support was removed, Kirsten died. That night, we gathered in youth group with unusual solemnity. Kirsten’s peals of laughter were absent. We gathered in a great circle with the lights off and passed a candle from hand to hand. In that golden silence, we could hear each other breathing and I understood. The call I’d felt was not the call of God after all. It had been the call of guilt, the call of vanity, whereas here in this room was real love. Kirsten’s parents had made this choice because they loved her. And as I had this humble thought, the candle reached me and something beautiful happened. I felt Kirsten’s soul and my soul joining and rising up towards God together.
Thinking to preserve this heady sense of souls in union, I wrote to the Bishop of Oakland and asked to be confirmed early into the Church. I was fifteen and didn’t want to have to wait until his next visit to our parish two years later. I’d felt God’s presence, I told him in my letter. But the Bishop was busy. He wasn’t impressed with my plea. And two years later, as I lay on the rug in a little room off the sacristy during confirmation class listening to an old priest drone on about the Holy Spirit, it occurred to me that this beautiful thing – this Jiminy-Cricket-like conscience that would sit on my shoulder as a stand-in for God, part of his mysterious trinity, to help me choose right from wrong – was something only a priest could confer through the sacrament of confirmation, and I didn’t like that fact. “That’s right,” the priest said when I asked him to confirm this. Dignified and silly, the priest rocked back and forth on his heels, hands resting on the round belly beneath his cassock, and he seemed too ordinary an intermediary between me and the transcendent love I yearned for.
Father B, on the other hand, is a priest I like. Father B is smart, reasonable, kind. He is no longer a priest at our parish – I’m no longer a member of any parish – but he has a long history with our family. He came up to the house when Mark died, he conducted the “laying on of the hands” when my father was first ill, he blessed our wedding rings. Even David likes Father B. My mother thinks that if Father B had conducted my confirmation class, I’d still be a member of the church. I don’t know if this is true, but I do know that removing life support is an uncomfortable act, and I sense Father B will be able to speak about it to my mother in a way that is supportive. Mostly, I want him to talk to her about heaven. After all, my mother has turned in torment to Father B with questi
ons about Mark’s soul. People who commit suicide are guilty, the church believes, of a sin as grave as murder, punishable by hell; our modern understanding of mental illness has only just begun to soften that condemnation. And yet Father B has told my mother that Mark is in heaven. If Father B has said this about Mark, surely he must believe that an unbaptised baby will go there as well. Despite Saint Augustine’s condemnation of such babies to limbo, the church must generally be softening in favor of a heaven more comforting to grieving parents. But Father B surprises me. When I tell him I am calling on behalf of my mother, he says, “Do I sense that a part of you is worried about Silvan’s soul, too?”
“IS THERE?” DAVID asks me now. I am back at the hospital and we are standing over Silvan’s little bed together. Our hands run over his body as if our constant touch is as necessary to keep him here as his blood’s circulation, or his breath. I have just told David about my conversation with Father B. “Is a part of you worried about his soul?”
Holding Silvan Page 5
