Books Discussed: Bonnie J. Rough’s Carrier: Untangling the Danger in My DNA (Counterpoint Press, 2010); Roland Barthes’s Mourning Diary, translated and with an Afterword by Richard Howard (Hill and Wang, 2012); Roger Rosenblatt’s, Making Toast (Ecco, 2010)
It was six months, almost to the day, from the time I finished chemo treatments, that my husband and I decided to try to get pregnant with our second child. Six months is the requisite time needed to allow the chemo to get out of your system, for all the traces and leftover hidden poisons to disappear. When we saw the plus sign on the test only nine days later we were excited but cautious; we’d had a hard year.
At the twelve-week ultrasound we were supposed to find out that everything was fine, and afterward we were going to pop the cork on the champagne bottle, and tell everyone the news. But it turned out that the baby was anencephalic—meaning it had a neural tube defect—which in our case caused the skull to not form properly to cover the brain. These babies, it turns out, don’t self-terminate, but are also not viable at birth. We chose to terminate instead of carrying the baby to term.
We had gotten pregnant blindly, believing the only health risk was to me, not to the baby. The next time we got pregnant, months later, we went into the process with the impending idea that we might have to terminate a baby again. Mothers who conceive one baby with anencephaly have a higher risk of conceiving another. And this choice, to get pregnant knowing full well you have a high likelihood of having to terminate the baby, is the topic of Bonnie J. Rough’s memoir, Carrier: Untangling the Danger in My DNA. Rough’s family members are carriers of a rare disorder called “hypohidrotic ectodermal dysplasia,” or HED. The main physical symptoms are “sparse hair, peg- or cone-shaped teeth, and the inability to sweat” with secondary symptoms of “dark circles around the eyes and a saddle-nose deformity.” The disorder is “carried invisibly by mothers and passed to sons,” thus weaving a pattern of motherly guilt through the narrative of Rough’s family tree. We see her grandmother feeling “guilty of something . . . [my grandfather’s] little wisp of a body daily broke his mother’s heart” and her mother sitting beside Rough’s brother crying, “I’m so sorry.” All this could make having a baby harrowing, knowing they were at high risk for HED, but what sets Rough on her journey to decide whether or not to become a biological mother, and by what means, is even more difficult: a test is developed during her lifetime that can tell her whether or not she is a carrier (she is) and a test is developed that can say whether or not a baby in utero is actually affected.
I cannot picture the loss of my children for more than a moment without my mind going blank, the possible pain of that situation seeming overly gratuitous even for my self-torturing imagination. It is a similar aversion, I suspect, that leads Rough to frame the question of whether she should have a baby with HED not in terms of: is my brother (who is afflicted with HED) worth it? Would I delete his life? But rather, would I terminate a baby with the affliction so that a different, healthy baby can come into the world?
The ethical vagaries, of course, are numerous, and this is the meat of her book. How is it possible to decide whose life is worth what? The ghost of her HED-afflicted grandfather haunts the family, and so she explores his life as a brilliant inventor “everybody liked” who falls into drugs, lying, bankruptcy, addiction. She reconstructs the narrative of his life, and in a way tries to determine if his fate was predicated on the disease or only a coincidental, exacerbating misery. She flies state to state “to interview [her] mother and [her] Grandmother Esta at the same table, to task them to tell and retell stories that, in one way or another, opened into [her] own.” Her grandmother “pulled out stacks of photographs . . . Her sister [Bonnie’s great-aunt] mailed more from Canada.” She writes that when her grandfather speaks to her through his life story, “Maybe he would tell me not, for any reason, to have a baby with the disorder. Maybe he would tell me to decide for myself; that every life begins untainted, despite lineage, despite flesh, despite the backward glances of parents.”
In many ways, though, the reconstruction of his life is not about the detective work of figuring out if her potential child could end up like her grandfather, if that child’s life would be totally miserable, because she has her HED-afflicted brother who is “smart, scrappy” and a “tender, practical soul.” She loves him, and he has said, “Bonnie, please. I wouldn’t want your kids to have this.” If the choice is to have a baby with HED or one without, even if it means aborting the first so the second can live, everyone who has seen the disease up close says, No HED. Of course, for the child you would choose less misery. She writes, “Dan and I knew that having a son with HED would mean we chose it for him.”
When I terminated my pregnancy I knew that the child would not live very long if born, but we chose no breaths over a couple days of labored breathing. We chose it for our child, but more, we chose it for us. I hadn’t realized that so starkly until reading Rough’s careful questioning. What the book really seems to be contending with deep down is whether or not you can choose this—a healthy child—as a mother, for yourself. Are you allowed to say, I am bringing a baby into the world, but it may not be this one. This one will suffer, and I don’t want to watch my child suffer.
Weaving in the narratives of her mother’s life (in her mother’s voice from interviews) we begin to see the obsession with her grandfather’s life not only as a sadness for him but as a determining factor in constructing the narrative of her family’s lives. “It seemed each person in the family held a few pieces of the larger story and welcomed the chance to unburden themselves.”
The book, in fact, begins and ends with the image of Bonnie being lain in her grandfather’s arms for the first time, with the joy and nervousness that he experiences holding a new, healthy child. The story from her mother is a transcription of interviews, Rough’s own narrative is a work of memoir, but her grandfather’s story—when it is not told from these other perspectives—is told from the first person. These fictional accounts are a way for Rough to get into his head, to try to understand his life not just for its effect on others, but on himself. We see him as “a real child, not a research project.” As her mother says, “You are part artist and part scientist. Maybe you were meant to show us what happened.” It removes our prejudices and allows us (and Rough) to evaluate his life as a human being. This, along with all the other perspectives, are important for everyone’s stories, because they are all interlinked. They are a family: like it or not.
However, as she explores her grandfather’s life and paints his misdeeds she does not seem like she is saying, Earl Hickman was a liar and an addict and so too, would be my son. She is saying, this happened to him, and it was painful for everyone around him. Her mother, toward the end of her own teenage years, realizes that all her classmates were thinking: “Paula Hickman has a totally messed up dad. A psycho. A druggie.”
What is most interesting is that when she exposes the horrors of his life and its effects on everyone and we begin to see that this is not necessarily the work of the HED, and that a child born with this could be as fabulous as her brother, she still allows herself to say, I do not choose this for me or for the child.
I understand this, having chosen a healthy baby. Of course, my baby would have died and hers would have lived, but now, seeing my second child grow and laugh and become a person, how could I not be thrilled with the choice? He is who I brought into this world and I love him. Which is much of Rough’s point: we love our children no matter what. The question is how much misery should you knowingly force on them? And on you?
You do your best to choose healthiness and happiness for your child, but the control isn’t always where you think it is. At my post-termination visit the doctor said, Well, the tests are back and it was anencephaly. Which meant, I realized for the first time, that the pre-termination diagnosis had not been definite. I felt careless with a life. I felt like I had made the decision all for myself. In a way, it was about getting rid of the proof that my body had failed, that I, cancer-free, was not yet normal. Just as Rough thinks, standing in front of a mirror looking at her own body once she finds out she is a carrier, I, too, felt “defective.”
* * *
The six months during which I had to wait before trying to get pregnant was also the time when I was at the highest risk of the cancer coming back. The risk is only slightly diminished in the next year and a half, and so one of the things we need to decide is, If I am going to get cancer and die, do I want my daughter to have a sibling? Does my husband want two children to raise on his own? And then only in the very far reaches in a completely selfish and self-important way do I think: do I want to leave two children saddened, grief-stricken that they don’t have a mother anymore?
I forgot, until reading Roland Barthes Mourning Diary, the destruction the death of a parent can cause. This diary, translated from the French by Richard Howard (who also wrote the afterword), chronicles Barthes’s life after his mother dies. It’s taken from notes written on scraps of paper, small thoughts and philosophies, never intended to be published. But it was published, along with some photographs of Henriette Barthes, partially as a way to erect a memorial of the sort Barthes sought for her, and partially to illuminate Barthes’s works from the rest of his life. What makes the diary so moving, and so claustrophobic, is that the diary is not a recording of life with thoughts of death thrown in, but rather only a record of his thoughts about his mother’s death. We may know where he is and the date from the header, and we may get some scene information such as “Emilio’s dinner with FM Banier,” but the rest is Barthes trying to wrap his head around death. He recorded the small, crushing thoughts that pop into our heads when we lose someone. With only a date on an otherwise blank page, there is the sting of grief. This was written a few days after her death, “Every morning, around 6:30, in the darkness outside, the metallic racket of the garbage cans. / She would say with relief: the night is finally over (she suffered during the night, alone, a cruel business).” Or November 11: “Horrible day. More and more wretched. Crying.”
Death, therefore, becomes much the influence we believe it to be, wrecking everything about life, numbing even the most pleasant moments, so that even these become about the death. He notes, “The desires I had before her death (while she was sick) can no longer be fulfilled, for that would mean it is her death that allows me to fulfill them . . . I no longer desire what I used to desire.”
Barthes is a philosopher, obsessed with the nature of language and words, and therefore tries to understand maman’s death not just emotionally, but linguistically. He parses the meaning of terms like “never again,” “she’s no longer suffering,” and “duration,” concluding: “And then one day it is no longer an event [death], it is another duration, compressed insignificant, not narrated, grim without recourse: true mourning not susceptible to any narrative dialectic.”
He’s clearly trying to create emotional distance, even going so far as to diagnose whether he is experiencing things emotionally or psychologically. He notes, “It is said that Time soothes mourning—No, Time makes nothing happen; it merely makes the emotivity of mourning pass.” Even he recognizes that “what is remarkable about these notes is a devastated subject being a victim of presence of mind.” In other words, he knows what he’s doing is a way of coping. And this could seem cold and more self-obsessed than mourning oriented. But he tells us that “the most painful point [is at] the most abstract moment.” Meaning, when all the analyzing and thinking fails. This is inherent in the form of the diary, which is solely dedicated to thoughts of the death of maman. The juxtaposition of this form and his attempts and failures of analyzing soon create a “monument” to his mother. Somehow the pathetic attempt to understand the pain of loss so academically magnifies the pain itself and makes it more emotional. He writes: “Now, from time to time, there unexpectedly rises from within me, like a bursting bubble: the realization that she no longer exists, she no longer exists, totally and forever. This is a flat condition, utterly unadjectival—dizzying because meaningless (without possible interpretation).”
He tells us, like Rough does, “[I]t’s impossible (meaningless, contradictory signs) to measure how much someone is afflicted [by bereavement].” But it is safe to say that Barthes seems rocked to the bone by his mother’s death. Even in moments of relief he says, “Sometimes, very briefly, a blank moment—a kind of numbness—which is not a moment of forgetfulness. This terrifies me.” And later, on November 28: “Does being able to live without someone you loved mean you loved her less than you thought?” In many ways it seems that he does not want to move on.
This is a constant, unrelenting pain that you do not wish for your child.
* * *
When you are told you have a disease that can kill you, and you have an overactive imagination, you—at least I did—struggle with this possible-death. When I was first diagnosed, I spent time picturing my motherless child, imagining her watching video clips of me so that she could understand her own facial expressions and hear the echo of my voice in hers. I imagined not just her pain—in Barthes’s way—but her asking again and again for stories about me. I pictured her going to kindergarten without me. I wondered who would know how she likes her peanut butter and jelly. I wanted to know, I guess, who would care for her.
I anxiously searched for answers in Roger Rosenblatt’s memoir Making Toast—a book detailing the loss of his daughter Amy when she was only thirty-eight years old and his move (with his wife) to Amy’s house to help her husband, Harris, raise their three children, Jessie, Sammy, and James. I hoped it could tell me how my family would exist without me. Who would bring them to school? Who would be their mom?
Rosenblatt writes in restrained, almost unemotional prose about the months after Amy’s death. Even in moments of sadness he pulls back. He writes, “Road rage was a danger in those early weeks. I picked fights with store clerks for no reason.” This is exactly the right mood for the book, which is dripping with sadness by its very subject matter. Sometimes he piles stories about Amy one on top of the next without even a paragraph break, just simply sentences telling us of her life. On one page stories appear about Amy’s jealousy at catching her mother “with another child in her lap,” a “dwarf rabbit” Amy had as a pet, a Mother’s Day breakfast in bed Amy prepared for Ginny. It reminds us that the moments of life are piled atop each other and there are thousands of stories that can be told about any given life. This reporting of moments, both happy and sad, is also what gives the book its strength. This is all just life, Rosenblatt reminds us: taking the kids to school, making them toast, reminiscing about a dead mother, teaching the children a made-up anthem called “Boppo the Great.” Once someone has died that is a fact of your life. As their psychologist tells Rosenblatt, “One of the delusions of people in grief is that once a year passes, things will start to look up.” She says, “You, Ginny, and Harris are now realizing the hard truth that this is how life will be from now on. One year is no time at all.”
But he doesn’t harp on the idea that the children are motherless or that they don’t have someone to sing them the same songs. He tells of learning to lock the doors and how to operate the dishwasher and thermostat. Then he simply says, “Ginny handles most of the essentials. She lays out the children’s outfits for the day, supervises the brushing of teeth, braids Jessie’s hair, and checks the backpacks. There is hardly a moment when she is not on call.” He reminds us that “something about the momentum of our lives is good for us, keeps us from sinking. Given the choice between confessions of sorrow, however cathartic, and the simplest act of getting on with it, we’ll get on with it.” This isn’t meant as nasty, of course, it is more about keeping busy, not drowning in sorrow. And as the book progresses it begins to allow in more and more moments of sadness, both from the present and right after the death, showing us, perhaps, how you have to keep moving, sometimes, before you can take the time to be sad.
I was particularly interested to see how Amy’s youngest child, James (called Bubbie), who was not even two at the time of her death, would react, how he would even remember her. After all, if the cancer comes back, I have a one-year-old. But Rosenblatt doesn’t give me the satisfaction. He has created the picture of a loving, sly, witty daughter with a lovely marriage that was “like a solid tennis doubles team. Neither one had to look where the other was standing.” I fall in love with Amy, hearing stories from her friends, her relatives. What I begin to see is the mourning experienced at the loss of an adult child. He writes, “The trouble with a close family is that it suffers closely, too. I stood with my two sons in the cold and put my arms around them, feeling the shoulders of men.” Here he uses the strength of his grown children to mourn the loss of another. The shock of losing an adult child is that it happens when you have taken a deep breath and think all your hard work is finished. I wanted to know who my children would replace me with, and instead I realized how horrible it would be for my parents to lose me now, or how painful it would be to lose my children in the future.
Rosenblatt writes about visiting Amy’s grave with his wife two days before the anniversary of his daughter’s death. He says, “We say nothing, and remain standing for five minutes, perhaps ten. ‘Tell me when you are ready to leave,’ I say. Ginny turns away and says, ‘Now.’” There is nothing in this moment but pain. “While there may be strategies that help Ginny and me feel a little better rather than a little worse, we will never feel right again.”
For days after reading the book I shut my eyes to sleep thinking of two-year-old Bubbie asking “‘When is Mommy coming home?’ He has never said such a thing. He was just starting to talk when Amy died. All this time, has he been thinking she was simply away?” I wonder, too, if my one-year-old would remember me. It unnerves me to think that he might not. And so this moment, in all its dramatic sadness, is a bit heartwarming.
It’s not just those of us who have had cancer who fear losing our children. I am only three-and-a-half years cancer free, but I don’t believe Hodgkin’s will get me in the end. I think it might be another cancer later in life. Or a car hitting me as I cross the street, or a murderer breaking into my house. I imagine my death constantly, no longer as I did as a child on long car trips, staring out the window, sobbing at the thought of my own funeral, but now thinking, And who will take Gray to preschool? And who will know how to talk to Thatcher? And who will tell them about me, so that they’ll know me? I find some comfort reading that “few things make Jessie and Sammy happier than stories of Amy as a girl.”
When I’m honest I think: but I love them, and I’ll miss them. I don’t want my children to feel pain, but as a person I want to be mourned, and as someone who has given in to defining herself with motherhood—at least so far as I’ve given up my single-minded focus on myself as I raise my children—I want someone to remember me as their mother.
Motherhood is about loving your children, raising your children, and about raising them to love you and eventually others. It’s about wishing the best for your children even when it pains you. At least to me. Not all the time, but most of the time. As Bonnie Rough spares her unborn child a life of pain, as Maman brought her child happiness and devotion, as Roger and Ginny Rosenblatt give up their late, child-free lives to take care of their grandchildren for their daughter. The question all parents want to know the answer to is: which pain is the worst? Can we quantify pain? Losing a parent early or late? Never living at all? Should I have let my child—the anencephalic one who would not self-terminate—take a few days of breaths, or should I have spared it the pain? Barthes says, “Maman taught me you cannot make someone you love suffer.”
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Jena Salon is the Senior Editor of TLR. This review originally appeared in TLR’s Fall 2010 issue, Refrigerator Mothers.