Learning How To Tell

"Perhaps the only way to overcome a traumatic severance of body and mind is to come back to mind through the body. We recall how voice dries up, and chokes its way out again."
Geoffrey H. Hartman, "On Traumatic Knowledge and Literary Studies"
New Literary History 26.3 (1995) 537-63, p.541

March, 1997; Claire is four months old. My mother-in-law is staying with us until May so that we can get through the semester. Andrew and I are working; Emma is at daycare three days a week; we are all learning how to take care of Clairey. We are "going through the motions"; hardly an original phrase but an apt one. Nothing seems particularly motivated anymore. I know I need to take care of Claire and Emma; I know I'm not doing a particularly good job of it. Oh, they are both fed, and clean, and warm; they are held and kissed. The motions we are going through are the right ones. And yet there is a roaring blank space just outside of our little sphere of motion that threatens to destroy me.
Two months ago-though it already feels like years ago--Claire was diagnosed with lissencephaly. The doctors told us that her brain was smooth, something that was the result of a neuron not migrating from one developing hemisphere of her little brain to the other when she was a fetus of about 8 weeks. Like a smudge on a blueprint, someone says. It feels much worse than a smudge: she will never walk, or talk, or even really recognize us. She will have constant seizures, some tiny-just a subtle twitching-but many of them big and bad, intractable, impervious to drug treatment. If we shun “heroic medical intervention” she will live perhaps a year or two, the doctors tell us.
I don't sleep much anymore; I eat sporadically. Some days I am ravenous, but there are days and days in a row when all I can eat is a little breakfast. It's not quite that I'm not hungry; it's that I can't stand to have anything in my mouth, in my throat. I can't swallow. Uncanny, given that this is precisely the problem Claire is beginning to have--she is starting to aspirate, just as they said she would when those protective little fat pads start to recede from her cheeks and the musculature starts to change in her throat.
The way I remember it, I am actually thinking about how uncanny this is when my muscles start to twitch. I'm sure the two are not so coincident, but the fact of the matter is that my body is starting to do what Claire's does. And it's not going away. In fact, what started as twitching in my left foot has now become a twitching in my legs and sometimes in my hands. There is a muscle on the left side of my face that thrums ever so gently but won't stop; my right eye--the good one--starts to spasm when I am tired. It's not noticeable to anyone but me; it doesn't interfere at all with any of the deliberate things I do with my muscles. But it bothers me, and it does begin to occur to me that my body is imitating Claire's in a very subtle, but unmistakable sort of way.
I imagine all the horrible things it could be. I’ve never been a hypochondriac, but I’m so steeped in the epistemology of diagnosis at this point that I spend almost all my time diagnosing myself. It’s MS, I think for a while. In fact, I’m pretty convinced of it. But then there’s an article in the paper about Jacobs-Kreutzfeld syndrome-mad cow disease as it manifests itself in humans-and I’m sure that’s it. Or maybe it’s ASL-Lou Gehrig’s disease.
I call my doctor, who I haven' t seen since my last physical, about 2 years ago. I tell him about the twitches and he asks me if I've been taking any "funny drugs." The question is so completely absurd to me that it sits outside the range of my comprehension for a few seconds. "Oh good god, no!" I finally respond, laughing, trying to imagine what all this would feel like in an alternative reality. And so he asks me to come in for a visit.

My doctor is a gentle man who I’ve known for a long time and who is properly sympathetic about my situation, even truly compassionate. He takes a lot of time in this visit just to hear me talk. He then does a bunch of rudimentary neurological tests (close my eyes and touch my nose; close my eyes and hold my arms out to the side; balance on one leg and then the other), asks me how much I’m sleeping, how much I’m eating, and reassures me that I almost certainly don’t have a degenerative neurological disease. “What you have,” he tells me without a trace of condescension or dismissal, “is stress. What you need to do is go into a corner and cry for about a week, and you can’t do that because you have people to take care of. Your body is behaving in a perfectly normal way-it’s telling you that you need to take better care of yourself: you need to sleep more, eat more, and probably let yourself cry a little more.” He tells me to try to get more exercise: endorphins will make me feel better emotionally, and the physical exertion should start paying off in better sleep patterns. I leave feeling listened-to; listened-to and hopeful.
But the twitching doesn’t go away. And now I’m feeling light-headed a lot of the time, like my brain is not quite attached to the rest of my body. The only time I feel well is when I’m running-I’m up to about 30 miles/week; I never, ever, skip a day. And yet, in spite of my now obvious physical fitness, I remain obsessed with my own health in a way that I know is not healthy. I can’t help it: I am convinced that I am going to die. “Whatever got Claire has gotten me,” I think, feeling sure that some environmental poison has attacked us both. My fear is almost entirely private. I reveal just the edges of it to my doctor, who I begin seeing in follow-up visits every four or five weeks at his insistence, but I am intensely aware that I am already asking for and receiving more from all the people in my life than any one person could expect. And Andrew and I are just barely holding on to our lives as it is-I know I can’t burden him with a whole new set of fears and worries.
The third time I see him, my doctor wonders whether it might not be time for me to consider getting a little pharmaceutical help. At the very least, I need to try to break the cycle of night-waking that I’m in: I go to bed and fall immediately asleep, only to wake at 2 or 3 AM to hours of sleeplessness. At first this happens only sporadically, but by the time Claire is 8 months old, I am sleeping the whole night through perhaps only one night out of ten. Desperate, I agree, and he prescribes a very low dose of anti-depressants. The first ones we try are supposed to help specifically with the night-waking, but not only are they ineffective in that department, they make me feel like I’m on speed-my body is just sort of buzzing. I want to stop taking them right away, but he tells me over the phone that such a sudden ceasing would likely bring on seizures. Seizures--the coincidences just keep on coming. There is a careful weaning after which he prescribes Klonopin-a “homeopathic dose” he says. But it doesn’t matter how little I’m taking, the only thing that I can think is that this is exactly what Claire is on for her seizures. I can’t ignore the coincidences anymore. And the twitching is not going away.
A few weeks later I am sitting in an examination room rehearsing yet again my symptoms when this man who has been so tremendously patient with me suddenly seems to lose his patience. “Lisa,” he says sharply, surprising me, “Is there something really bad happening to you?” I look at him in confusion. “That’s why I’m here,” I say, “You’re the one who’s supposed to tell me that.” “Lisa,” he repeats, and he pronounces each word a little too forcefully, like some people do when they’re speaking to someone whose native language is not their own, “Is there something really bad happening to you?” “Do you want me to tell you?” I ask, grappling for some footing is this odd exchange, thinking that maybe he’s come to the end of his diagnostic powers and is asking me to intuit what it is that I’m suffering from. Again, he repeats his question, each word fenced off from the others. Confused and a little scared, I can only stutter, “I don’t know, I just don’t know anymore.” And then the sharpness is gone and he says to me, as though he’s resigned to the futility of this exchange and maybe even a little sad about it, “Lise, something really bad is happening to you . . . but it isn’t this.” And I sit there in a kind of paralyzed silence as he gets out a pen and writes me a referral to a neurologist. Handing me the referral, he tells me to schedule my regular follow-up for 4 weeks out, and he walks out of the exam room, shutting the door quietly behind him.

The fact that I couldn’t answer what was, in fact, a very simple question with a very obvious answer hounds me for days and days, but then the obvious begins to dawn on me: the fact that my symptoms have imitated Claire’s has nothing to do with an external event. The body has an amazing way of “thinking” for itself. And my body is doing the only thing it can do to connect me with my child-it is imitating her. There is also, of course, a deeply narcissistic side to this imitation. In the three years I’ve been a mother to Claire’s big sister Emma, I’ve tried very hard to respect and honor the fact that she is not me, that she is a separate human being with her own desires and dreams. But I know that I’ve also depended on the maternal nourishment that arises in the moments when I recognize in Emma some of the unmistakable features of my own emotional landscape. I treasure these flashes of recognition as I do not because I think I’m so wonderful (in fact, I often worry that she resembles me), but because I have a visceral need to know her, to know her in a way that goes beyond simply knowing things about her. Even before Claire was diagnosed, I would spend hour after hour just trying to get her attention and feeling terrified about the yawning space that was opening up between us, a space of unknowability. When she was diagnosed, I remember feeling stabbed by the recognition that I would never be able to know what my own child was feeling, that every door to her lived, everyday reality was completely locked to me. My incapacity to accept that situation is now made manifest in what my body is doing. I will know her, my viscera is insisting, even if it means leaving the conscious mind behind.
But part of this act of knowing that my body is performing is also, I realize, an act of narrative. In the class I teach on literary theory, I have many times introduced my students to narrative theory through Freud’s famous story of fort-da from Beyond the Pleasure Principle. The story is of an 18-month-old boy, greatly attached to his mother, yet who, Freud tells us, “never cried when his mother left him for a few hours” (13). “This good little boy,” writes Freud,
had an occasional disturbing habit of taking any small objects he could get hold of and throwing them away from him into a corner, under the bed, and so on.…As he did this he gave vent to a loud, long-drawn-out ‘o-o-o-o’, accompanied by an expression of interest and satisfaction. His mother and the writer of the present account were agreed in thinking that this was not a mere interjection but represented the German word ‘fort’ [‘gone’]. (13)
Watching the boy one day, Freud sees him take a wooden reel by the string and throw it over the edge of his curtained cot, uttering, as it disappeared, the expressive ‘o-o-o-o.’ For the first time, however, Freud witnesses the completion of the game when he watches the boy pull the reel back into the cot, declaring joyfully as it reappears, ‘da’ [‘there’]. “The interpretation of the game then became obvious,” says Freud. “It was related to the child’s great cultural achievement-the instinctual renunciation (that is, the renunciation of instinctual satisfaction) which he had made in allowing his mother to go away without protesting” (14). The young boy had mastered the traumatic disappearance of his mother with a narrative-something is lost, something is found. It is the shortest story ever, but it is, even in its brevity, a kind of creative compensation both in act and in language-fort and da being among the very first words the child speaks-for something that clearly caused him a great deal of emotional pain, the most pain, perhaps, that a healthy toddler can feel.
My inability to recognize my own story in the doctor’s office is witness to my inability to pronounce da, to tell, to imagine, the whole of my and Claire’s story as I am living it. “Gone,” I have said, “she is gone.” And I have said it, or its equivalent, over and over and over again. I have said it ceaselessly, so that there has been no room for da at all. Unable to sustain the relentlessly fractional nature of this narrative event, my psyche, through my body, has started to assert its own version of da: Claire will not be gone if I can become her. It is, to be sure, not a healthy way of telling the story. I need to find a better way to pull the reel back in.
I cancel the appointment with neurologist. Maybe I really will need it eventually, I think, but for now I want to believe that my discovery of the missing half of my narrative might be telling me more than any CT scan can tell me about my symptoms. I start writing, slowly at first-just occasional little scribbles in a sort of journal-but then little essays and then-and still-a book. On the page I am teaching myself to say “da.”

“I think I was mean to you last time.” It is the first thing my doctor says to me at our next appointment. I tell him that his cruelty, if that’s what he thought it was, seems to have been necessary for I feel as if his question has quite literally saved my life. My symptoms don’t go away overnight (in fact, they don’t go away entirely for a very long time), but as I find new ways of telling my story--as I learn to grieve--I begin, very slowly, to feel better.

In a wonderful book called Doctors’ Stories, Kathryn Montgomery Hunter talks about "narrative incommensurability" a fancy way of saying that often doctors' stories about our illnesses, and our own stories of our illnesses don't match. In seeking out my doctor’s advice and help I was in quest of exactly this difference. Almost certainly I knew that my physical response to being Claire’s mom was ineluctable, but the narrative that made it so felt too painful and way too unresolved for me to embrace. In seeking a “diagnosis”-terrified as I may have been about that-I was looking for another story, one that I could own even if I couldn’t control it. Most doctors would, I think, have gladly cooperated with my quest; it is their job, after all, to name and treat illness. And indeed, the few people who knew about my health concerns were at times alarmed that my doctor was not ordering tests for me-blood work or CT scans or muscle biopsies. But what made my doctor a healer, and not just a diagnostician, is that he resisted transforming my story into his own narrative. I was ill-neither he nor I were in any disagreement about that-but he refused to objectify me as a specific illness. Admittedly, he took a risk in not ordering those tests, but it was not a blind risk-it was a risk based on his own compassionate investment in what was happening to me.
"Patients need more than the medical facts of their case,” Hunter says; “they need to be able to translate that knowledge into the terms of their lives" (146). In my case, it was always and only about “the terms of my life”-that was the whole diagnosis. And, amazingly, despite his considerable skill as a conventional practitioner of modern medicine, my doctor recognized that. Hunter would probably say that he gave me my story back, that he “re-storied” me. But I suppose I would say that, in my case, it was even more basic than that. He was a part of a growing chorus that I was just starting to hear in my life reminding me that there was a story, and that as unthinkable as that story sometimes seemed to be, my own survival depended in large part on not only learning how to think it, but on learning how to tell it.

(Claire Margaret Schnell Barnaby died at home on June 1, 1998. She was 18 months old.)