She Did Not Speak

 

It began so quietly that no one could hear it.

How to begin a story that can never be told? For a long time, I started to tell the story by not telling it, by a series of stabs in the dark, writing a book of first lines going nowhere. To find a narrative with which to tell the story—the story of my mother, the story of my coma—can only begin as a first line among a multitude of possible first lines forever hovering in the possibility of becoming a story. 

I cannot know my own coma 

or 

I could never hear my mother’s French accent in English, no matter how hard I tried

or 

My grandfather spoke Esperanto 

or 

My childhood playground was a Cold War missile site

or

Il n’y a rien à dire

or

My mother did not want me to see. 

_____

My mother would not let me wear the glasses I got when I was seven. She had perfect vision and hated that I was so myopic. I was only allowed to wear my glasses in class to see the blackboard. I would secretly keep them on in the school hallways, and only take them off on the way home. I wonder how it is I was able to even find my way from home to school. I could not see a thing. 

I remember feeling confused when I first got my glasses, not sure which picture of the world was real: the one without my glasses that gave me the beautiful blur of shapes that I could conjure as an entire undersea world, or the one with my glasses in which the magical, watery blur became the clear lines of houses, faces, roads. 

My mother, determined that her daughters’ faces not be disfigured by glasses, insisted that we get fitted for contact lenses when we were in junior high. The appointment with the eye doctor was in the middle of the school day. When I returned to school that afternoon, my class was in the auditorium watching the film version of The Diary of Anne Frank. Seeing images of the Holocaust for the first time, without the protective covering of my glasses and with the contact lenses starting to sting my eyes, I felt as if I were watching something I was not supposed to see or know, with no screen or layer between my eyes and the haze of my mother’s submerged past. I was seeing into something that I knew, but it was blurred, undersea.

 

My mother did not want me to see. 

 

I first saw into my mother’s buried undersea world nine years ago, when I went to meet her half-brother in France for the first time, and I learned that my grandfather (divorced from my grandmother in the 1920s and estranged from my mother) was one of seven siblings. I did not know he had any siblings. My mother never told us. 

My mother had always told us that her family name had been changed in the war, to make it less Hungarian, less Jewish, more French. She never told us what the name had been, however. We never asked, not until after she ’d died. My sister and I were in Paris, and we decided to go to the city hall offices, the mairie, of the district where my mother had lived, to find family documents. After several hours of failed attempts to turn up anything, my sister, on a whim, gave the clerk the spelling of the old, unchanged name. And suddenly, with just the few vowels changed, we got it all: birth certificates, death certificates, marriage licenses, and, most interestingly, baptism papers. My mother, it turns out, was not baptized at the start to the war, as she had always told us, but a month after the Wannsee conference, in early winter 1942. We discovered that she had changed her name after the war, when she came to America. 

I now also have a picture of my mother in her baptismal outfit: a very white dress, an even whiter and more enormous veil covering her dark curly hair, and an enormous cross. She had just turned thirteen. The picture was taken in a studio in Paris, and is dated 20 March 1942. A document intended to save her from the darkness. 

And so, with the new knowledge that the name had never been changed, we were able within minutes to find our uncle, the half-brother of our mother, born after the war. We knew of him, but had not been able to locate him because we had been searching under the wrong name. He is a cardiologist in Burgundy, and his hospital website came up immediately in a quick internet search. 

_____

Several years later, I went to meet my uncle in France. It was in his house in Burgundy that I saw for the first time a photograph of my grandfather. My uncle pointed to the tallest of the young boys, in the back of the photograph: “That’s your grandfather.” 

I asked him who the other people in the photograph were. There was a long silence. My mother had never told us that her father had siblings. We always assumed he had been an only child. Of the seven children in the photograph, only three survived: my grandfather, in the south of France, one sister, and one brother. The others had been deported, with spouses and children, late in the fall and winter of 1944, from Budapest to Auschwitz, Dachau, Mauthausen, Bergen Belsen. I had been to all of these places without knowing.

At that instant I knew the undersea silence that lay just beyond the constant chatter of my childhood home. I was stunned into a new kind of silence and a new kind of darkness, and was left wondering how it is that one knows anything at all. My uncle did not know anything other than the basic facts: of my grandfather’s survival in hiding in the south of France, of the priest who hid him and saved his life, and of his siblings’ deportations and deaths in the camps. 

 

Through a photograph, darkly. 

 

Later, after I returned from France, I did some quick research in the U.S. Holocaust Memorial Museum in Washington, D.C., and learned what I already knew without knowing about all those deaths. 

Two of the children in the photograph survived: my great-aunt Lily and my great-uncle Pali Piszker, the furrier who had his shop in the Kiraly utca 34, the same address that appears in the documents I found, within just a few minutes, in the Holocaust Memorial Museum archives. During the war, the Kiraly utca, the so-called Jewish district of Budapest, was the ghetto. It is the last address listed for my grandfather’s brothers who died in the camps. 

All that I have of my grandfather are the photographs from my uncle. In one he is standing in the sunlight in an open field next to a Catholic priest wearing robes. They both look stunned, as if they had climbed out of a hole into the sunlight. This is the priest who saved my grandfather’s life during the war. 

 

My grandfather spoke Esperanto. 

 

After the war, after he had been hidden in France by a priest, when he became so quiet that he rarely spoke, my grandfather devoted himself to studying Esperanto, and was part of a group of Esperanto speakers in Paris. Was it another form of hiding? Did he, my grandfather, my avo, say that he was a judo and that he was speaking this secret language of a newly flung diaspora to drown out the lamentante? Did he speak Esperanto because it was a way out of the mallumo, the darkness? And are the lamentante found in the creases of the photograph I have of him, his parents, and his siblings—that first photograph I ever saw of him?

In fact, I did meet my grandfather once, when I was five years old. It was in Paris. Jardin du Luxembourg, and I am holding the stick as my magical horse and I go around the carousel, trying to capture the iron rings in the jeu de bagues. I remember my mother watching me as I caught the ring, triumphant. Was she triumphant watching me play at being the little French girl? I also remember waking up one morning in an enormously high bed with my eyes glued shut from conjunctivitis. I could not see; everything was dark. Somewhere on that trip we were taken to meet our grandfather. I remember being told I was going to meet him, but I do not remember the meeting. Were my eyes still shut? Did he speak to me in Esperanto? 

 

Stunned into the darkness.

 

Later, in the afternoon before I took the train back to Paris, my uncle took me to the cemetery to see my grandfather’s grave. A small cemetery in Paray-le-Monial, a tiny village in Burgundy. The graves, French-style, are all above ground, large crosses on each one. My grandfather’s grave was the only one not marked with a cross. By the time we left the cemetery, my grandfather’s grave was also the only one marked with two small stones. 

 

My grandfather spoke Esperanto. 

 

A year later, I made a trip to Budapest to meet the cousins I never knew had existed. One of them, an older psychoanalyst, had invited everyone to her apartment to meet me, their long-lost American cousin. I was in the kitchen, helping put the food on platters. I could see that my mother’s first cousin, György, was standing in the living room, holding a large box of what I assumed were old photographs of my grandfather and his family, photos like the one I had seen at my uncle’s house in France the year before and that first shocked me into knowing my mother’s story was not as it seemed. 

As I walked toward him, György took one of the pictures from the box and held it up to my face. Suddenly the room fell silent. Everyone was watching. But the picture he held up was not of my grandfather or his siblings or parents, but instead a baby picture of my younger sister. Silently, György held up picture after picture. They were all of my sisters and me: Nicole, age three, at her birthday party; Michele and Leslie doing a jigsaw puzzle in Brownie uniforms in the den of our house in Glencoe, Illinois; Leslie on the swing set on the playground. On the back of each photograph was my mother’s unmistakable handwriting, in Hungarian, addressed to her aunt Lili, the one sister of my grandfather who had survived.

 

Through a photograph, darkly. 

 

The world became silent. I hardly breathed. At the moment of seeing the box with the photographs—a box that had sat for fifty years with all the baby and childhood pictures of my sisters and me, a box passed on from the aunt I never even knew had existed to her son, with my mother’s handwriting on the back of each photo—I was stunned into a new kind of knowledge: that two truths had always co-existed. They knew about us, but for us, none of them had ever existed. 

Two days after my return from Budapest, I fell into a still-unexplained coma that lasted more than five weeks. 

 

Stunned into the darkness. 

 

CLINICAL OBSERVATION: There are no regions of restricted diffusion. Expected flow-voids within the cavernous carotids and basilar arteries.

 

Falling into a coma. I fell into a coma. And we all fall down. 

Falling into the darkness. 

_____

Here is the photograph to which the darkness of my coma can be traced. My coma world, the Old World, the darkness of both. It is the Ur-photo, the photograph that first stunned me into the knowledge that the story I never had been told was the story at the center of my entire childhood, and the one that led me to the photographs in Budapest: 

A line from Heschel about “the darkest night,” in which one is still “certain of the dawn,” flickers into my mind as I stare at the photograph now on my desk. The nine faces staring back at me remind me of an early Christian fresco of the Last Judgment that I had seen, years ago, in Rome, and of which I kept a postcard: a wall of solemn faces, floating, not yet grounded in pictorial space, just hovering like the angels my mother had on her walls, looking out at us with their faded, timeless faces. The nine faces in the photograph are looking out at the camera, not smiling, in a sepia wash of stillness, capturing the moment of night that is not certain of the dawn. The photograph is well composed, with the youngest three children draped at angles on the laps of their mother and father. My great-grandfather is wearing a military uniform. My grandfather is standing in the back row, looking expectant, his mouth slightly open, an expression in his eyes of knowing something beyond the sepia world that bathes the family.

 

IMPRESSION: Stable unremarkable MRI of the head. 

 

When my sisters and I were in high school, our mother would pack us into the car and drive to an apartment on the Upper West Side that had been transformed by four Hungarian sisters, all Holocaust survivors, into a makeshift spa. There was no sign, no advertising; you found your way there only if you were part of the secret society of female Hungarian survivors carrying out that most Hungarian of beauty rituals: waxing. In what would have been the living room of the apartment, women and girls were draped on ten lounge chairs, limbs exposed, waiting to be waxed. The Hungarian women would circulate around the room, carrying pots of hot wax, the tattooed numbers visible above their wrists. Everyone spoke Hungarian, and I somehow knew that our trips to this place were part of the persistent secret that was always hovering around our family. 

 

Leslie is now receiving apheresis for presumed limbic encephalitis. Specific etiology for all of this is vexing.

 

I sit and read the twelve hundred pages of my medical file, reading and rereading. It is the great unfinished text of my dreams, the novel that consists of first lines going nowhere, or in this case, all lines leading to the one that is the leitmotif of the file: “post-infectious encephalopathy of unknown etiology.” The file talks about a “very pleasant 51-year-old professor of German literature” who is, oddly, unresponsive; yet by about page eight hundred I have morphed into a history professor. As the story moves forward and my condition deteriorates, I become a character in a narrative, one I do and do not recognize.

 

ASSESSMENT: Neuro status unchanged. Porphyria ruled out. Hem/Onc input much appreciated. I am reasonably confident that we are dealing with an autoimmune process. I am less confident about the specific cause. 

 

The Medical File/Phile: to read it is to descend to the darkness of the place where I was and was not, and that I cannot know no matter how hard I try—somehow like my mother’s French accent that I could never hear no matter how hard I tried. After I was discharged, I put the documentation of my five weeks in the ICU and the three weeks of hospital and in-patient rehab afterward in two tote bags I had bought the year before at a performance of Cirque du Soleil. One side of the bag says, “Le rêve continue,” the other, “the dream continues.” 

On my desk I have a bottle of Wite-Out. I read and erase, the Wite-Out a light snow-cover that does not ever fully erase, but instead leaves the breath-traces of the words that describe the me I cannot remember. To white-out the darkness is the task. 

In the middle of the file I find, suddenly, the one line I cannot get out of my head: the final line of a long observation by one of the many doctors who examined me and made an entry in the file: “She did not speak.”

 

A manifesto of incompletion, a desire for what lingers in the air between speech and silence, moving from darkwords to darkwords.

 

As the exam progressed, tone increased markedly in her lower extremities with her knees basically locked and her ankles immobile. Her shoulders had a little increase in tone. Neck also a little increase in tone. DTRs were unremarkable. She did not speak. 

 

The fall into my prolonged state of unconsciousness was gradual. It took about thirty-six hours from the first odd neurological symptom—a sudden numbness in my limbs that woke me in the middle of the night—to the full loss of consciousness. I am told that I became gradually unable to turn over or to speak, although I had not yet fully lost consciousness. The neurologist who saw me in the ER later told me that all I could say was that I felt like Gregor Samsa. He did not know Kafka’s story of Gregor waking one morning as a giant insect, unable to turn over or navigate his sudden insect body. He thought my muttering about Gregor Samsa was simply one more neurological symptom, rather than the precise description that it in fact was. 

 

Encephalitis—most likely has limbic encephalitis, which is an autoimmune and sometimes paraneoplastic process. He requests apheresis. Discussed rationale for removing antibodies in attempt to reduce pathologic antibodies in CSF. No guarantee of success was discussed.

 

In the months after I woke up, I felt at times like Primo Levi’s figure of the Muselmann. People would look at me as if I had some knowledge of what it is to descend to the depths of the unconscious. Levi describes the Muselmann as the only possible witness to the camps, yet being unable to narrate what happened: caught in a paradoxical position, hovering between death and life, the Muselmann is the one whose proximity to the darkness of the Holocaust, to death, marks him forever as “knowing” what others cannot know—knowing the inexpressible. I could see the look on people’s faces as they watched for signs that would mark me as having emerged from an unknowable place, from “the undiscovered country from whose bourn no traveler returns.” I felt trapped in the role of the oracular patient who was there to help them navigate their own deepest fears of their own darkness. 

Her progress has been astonishing. In less than a week she is awake, talking, standing, cognitively intact. Interestingly, from a psychological standpoint she has been preoccupied with emotional trauma predating and resulting from this event. Providers have found it difficult to redirect her, and she essentially states that she has a hard time redirecting herself. 

 

I was called to the darkness, and the darkness called to me. And once in a darkness we have only dark words to say. And beyond the first line there is only the darkness. 

Wir sagen uns Dunkles. We speak dark things.

 

It began so quietly that no one could hear it.

 

Post-infectious, does not fit Guillain-Barré with no weakness, do not feel directly related to travel to Europe which seems benign; issue of botulism raised—no wound or bite, no bad food we are aware of, potentially could have had some bad food in Europe though presentation does not fit botulism in my view.

 

When I first woke from the coma, I had no memories; however, I did have a persistent sense of having been trapped in a place, and the name my unconscious gave this place was “the Holocaust.” I told the doctors that I had been “in the Holocaust” and that I had been desperately trying to emerge out of the darkness of that underworld. I am told they tried to stop me from locating my comatose self in that place, and urged my family to steer me away from that memory and back into the present. Yet I persisted (I am told) in describing my weeks in the coma as “in” the Holocaust—not as a witness from a distant place, but there. Although the doctors are certain that a virus caused the first neurological symptoms, they also do not rule out the role of the traumatic shock, physical and visceral, of learning that my mother had whited-out her, and my, entire extended family, both the living and the dead. 

 

Coma persists. No significant clinical change from a neuro perspective. The normal brain MRI is very good news, and the EEG is good relative to her clinical state. Discussed with the attending for neuroimmunology at Mayo. He is thinking it could be NMDA receptor antibody syndrome or a non-specific post-viral encephalitis. 

 

I live under the planes. More precisely, I live directly in the flight path, less than ten miles from the Minneapolis–St. Paul airport. Until the newer Airbus 330 replaced them, I used to be able to tell time from the struggling sound of the ancient dc-10 evening flight to Amsterdam, the mid-morning arrival of the 747 from Tokyo, and the 12:20 arrival of the 747 from Amsterdam. My internal clock is tuned to the rhythms of the great machines bringing travelers from Europe, Asia, and other parts of the U.S.

When I spot the Airbus 330 to Amsterdam and then to points refracted like the spray of the stars and the Milky Way—Bombay, Delhi, Dhaka—I am only able to say, haltingly, “there goes Amsterdam,” or sometimes simply “Amsterdam,” that one place standing in for everything absent, unspeakable, irretrievable, mourned: my mother, Europe, languages that are not English—sound wrenched from meaning, my mother’s French accent I could never hear, my mother, my mother, my mother. 

My mother had her own way of navigating American geography: the places of the United States were held in the compass of her mind, connected by dots of her own fabrication, and breathed into the chambers of our brains and hearts so that the names of certain states—Massachusetts Illinois Wisconsin Alabama Kansas California—meant not only a given place on a map, but a point on the ever-shifting emotional map of my mother. She had divided the United States into zones and regions whose moods and colorations changed with hers and shifted over the years. When I was young, the entire east coast could do no wrong, while the Midwest spaces of my childhood were reviled as the very antithesis of Europe. And yet, by my early twenties the east coast had fallen from its Edenic condition and the Midwest became the lost Arcadia. California was a word always uttered with contempt. 

Of course, nothing of any consequence lay between Illinois and California, no places that could even be named, but the people who actually lived in these mythical places were what my mother referred to as “real Americans.” Now, when I hear the pilot speaking from the cockpit I, too, am thrilled by the sound of the “real American” pilot’s voice as he intones the names of the places we will be flying over: “Well, folks, our flight today will take us over Lake Michigan to the outer edge of Lake Erie, through Pennsylvania and the Finger Lakes of New York, on down to LaGuardia.” The litany of places spoken in an “American” voice was the reminder of everything we were not—and of the darkness from which my mother was always in flight, the darkness of the world on the other side of the ocean.

 

IMPRESSION: Stable unremarkable MRI of the head. 

 

And it was for my mother, and therefore for me, a darkness. A darkness that was never spoken but that slowly encroached on my world, in childhood fears—of the dark, of the cavernous spaces of our basement, of airplanes, of separation from my mother, of the housekeepers I was convinced were burglars in disguise, dressed in the customary maids’ uniforms of the 1960s. For much of my childhood we had Hungarian women housekeepers who lived with us, who fed us and got us ready for school. These women who lived with us and who knew my fears of the dark—did they know the darkness my mother knew and was not talking about? 

 

Concern for acute porphyria. Transferred to ICU for closer monitoring given deteriorating course. Heme, ID, neuro all following.

 

Six months after I woke up, I went to the Mayo Clinic for yet another series of tests, still trying to figure out what had happened. The lead doctor on my case was a neuroimmunologist, a large Irishman who told me, at the end of the week of tests (with the same inconclusive results as earlier), that he had one piece of advice: “Don’t look back.” 

 

Thank you for the opportunity to consult on this interesting patient.

 

I “fell” into a coma. But a coma is not a thing, it’s a no-thing, a descriptor, or a symptom, not a diagnosis. And yet it’s the word, the shorthand, for where I vanished those many weeks six summers ago. I cannot know “my” coma. The consciousness I remember is a projection onto no-thing. 

 

The initial exam of feet and legs: she had only mild increase in tone and at one point appeared to respond to my request to push down on her foot by moving her toes down that I felt, and also that the nurse observed in her other foot. 

 

When I first went to Germany, I kept collapsing; the doctors had no idea what was wrong with me. I didn’t associate it with being in Germany. I just kept collapsing. 

After graduating from college, I left to spend a year in Germany. My first day in Europe, having landed in Luxembourg and spent the night at the youth hostel, I set out to see the city before leaving the following day for Germany to begin my studies. Within several minutes, I began to feel dizzy and disoriented, as if I were about to faint. I looked up and noticed that I was standing in front of a Catholic convent. I knocked on the enormous door, and a nun in full habit answered. I told her, in French, that I was feeling faint. Without smiling or saying more than a few words, she led me inside to a small room with a bed. It was cold, spartan, and I felt a frightening sense of the inevitable, as if I were being pulled to another world. After I rested for a few hours, I felt well enough to get up and continue my sightseeing.

Why, at the moment of feeling ill and oddly stunned to suddenly be in Europe, that place of elusive mourning and mother-need and memory, did I stop at the convent? I could not know that knocking on that door was the start of my odyssey to Germany, one that would lead me back many years later—after I had become a professor of German literature and written books about Jewish memory, buried memories, post-memory, and what I have called post-memoir—to my mother. I had not yet seen the photograph of my grandfather with the Catholic priest who hid him during the war. I did not yet know that despite the constant chatter, my mother was not speaking about her past. As the nun led me to a room to rest, it was as if I were walking back in time to the war years, to my mother and her pull to Catholicism. 

 

DDX remains complex and not clear.

 

My first collapse happened a month after arriving in Germany. I was studying German at a language institute in Göttingen, and I fell in love with the city, with Germany, with the language, with the smells of the woods outside the city and the spiced wine and candies at the Christmas market, and with what felt like a life in which everything was not only orderly, but knowable. I fell into the German language feverishly—the mathematical beauty of the grammar, the way words could be built from more words, the pure sound of a language that was so fully removed from my mother and the French and Hungarian of my childhood. It was mine. 

At the time, I had a vague idea that in moving into German, in becoming a nomad stunned into a new language world, I would finally be able to write in English. I framed, however shakily, this voluntary exile to German as a way of pledging allegiance to English. I had a persistent sense that I needed to write something and that it had to do with my mother and her past, but I did not know what it was. I thought of immersing in German as a way of going underground, of using German as a front in order to do the clandestine and more important work of writing in English. German was the illicit affair, it was the architectural hiding place, and I was head-over-heels in love with it. I gorged on the sounds of German and reveled in the magic of a grammatical structure that was not mine. I was finally separated from my mother and being force-fed French. My plan, at age twenty-one, was to inhabit German for my life above ground, and to use English for the subterranean task of writing the secret, the one I still did not suspect, of my mother. I would live and breathe in German and, in my youthful fantasy, what would come out would be a kind of coded English that would be touched, mysteriously, by the presence of German. What was the code to be? Again, I knew and yet did not know. But I knew that I had a pull to Germany that I could not explain. 

And yet, those first months in Germany, I kept fainting and losing consciousness. I would awaken in the middle of the night with overwhelming nausea, as if I needed to vomit. I would get out of bed to make my way to the bathroom, and would find myself, minutes later, coming to on various floors. “Ich bin in Ohnmacht gefallen,” I would tell the doctors, thrilled that I had mastered the past tense of an intransitive verb, and marveling over the noun in German that means to fall into a faint, Ohnmacht—without power, an antiquated form of the prefix of negation of Macht, or power. The body falling is powerless to the fall—the mark of the intransitive—yet my falls out of consciousness had the power to lead me to the story that I still cannot know. Ohnmacht. 

The German doctors were mystified. One neurologist concluded that I had the brain waves of someone with a permanent migraine, even though I have never had a migraine. 

These persistent falls out of consciousness were finally diagnosed as neurocardiogenic syncope when I was in my thirties. Syncope is defined as a transient loss of consciousness, with loss of posture (i.e., falling). Syncopation in music is the off-beat, the unexpected. Syncope also means the omission of a sound or syllable from the middle of a word. And then there is the very heart of the term, the medical meaning: a brief loss of consciousness, an abnormal or exaggerated autonomic response to various stimuli that involves reflex mediated changes in heart rate or vascular tone. 

Over the years, I have broken my nose, had two concussions, and suffered other bruises from these falls. I lose consciousness with such suddenness that I am not aware it is about to happen—it is not a slow melodramatic cinematic faint. But it is the return to consciousness that haunts me the most. Over a matter of minutes, I come to gradually, but always with the sensation that I am submerged under water. I move my arms as if I’m trying to swim to the surface. It looks, I am told, as if I am having a seizure. What I experience is the great struggle to regain consciousness, to return to the surface of life as we know it. 

My syncope episodes usually happen at three am. On the dot. No doctor has been able to explain this. 

Oddly, on the first day of falling into the coma, I had a syncope episode, with complete heart block; this is, I am told, why I was moved from the neuro floor to the ICU, where I then stayed for the next five weeks. 

 

Events: telemetry picked up brief period of ventricular standstill. 

 

The Ur-tale of me and my mother: my first collapse in the sandbox on Marine Drive at age two. My mother would narrate the story of what I now know was my first neurocardiogenic syncope episode. She would tell the story again and again, as if I were a character in a drama starring her: how I suddenly collapsed and went limp while playing in the sandbox in the playground on Marine Drive, in Chicago—or is it that I went limp and then collapsed? She grabbed me, she would say in a voice quivering with emotion, and rushed with my still-limp body in her arms, across the many lanes of traffic of Marine Drive, to the hospital. In my mother’s telling and retelling of this event, it was as if the road she crossed with me was the Atlantic Ocean, an eternal crossing back and forth: my body still limp, my mother frantic, stopping traffic to get across. My mother, who had arrived by ship to my parents’ first apartment on Marine Drive and who then crossed Marine Drive with me, limp in her arms, would tell this story again and again: how she reached the hospital gasping for breath, how I came to in her arms, how the nurses and doctors grabbed me and took me from her, and how the next two weeks were spent with me in Children’s Memorial Hospital, my mother at my side. (In her words: I would not let her leave me, so she stayed day and night in the hospital with me.) They were not able to discover what was wrong, and I was eventually discharged. 

My mother told this story of crossing Marine Drive but never told the story of her own life, of how it is that she ended up with two children at a playground in Chicago in the early 1960s. 

 

I fell. Falling into a coma. I fell into a coma. I fell into a coma and we all fall down. 

 

If improvement in her level of consciousness over the couple of days, then a trial of IVIG. IV Solumdrol 1000 mg weekly now. The clinical course is likely to be long, and EEG monitoring may need to be done again. 

 

I have scars from the many medical procedures during the coma, including a second “navel”—i.e., the scar that remains where my feeding tube once entered my body. 

 

There has been no consistently identified primary etiology for her current clinical picture.

 

When I first awakened, I could not speak. I had no control over my vocal cords because they, like all muscles in my body, including my eye muscles, had been frozen for the weeks of the coma. I listened to the sound of my voice, disembodied, flying over my head and trying to make the sounds that I could hear in my head but could not reproduce. 

My memory is hazy for the initial days after waking. I knew that my return was momentous, but I did not feel the momentousness. I had little idea how I had gotten there. What I remember is the hum of the machines in the room and the contraption that lifted my weak, still nearly immobilized body and flew me from the bed and into the bathroom. 

 

The clinical presentation is more characteristic of what is probably even more rare than limbic encephalitis, namely Bickerstaff’s brainstem encephalitis (BBE), which is considered a variant of the Miller Fisher variant of Guillain-Barré syndrome (ophthalmoplegia, ataxia, and areflexia). 

 

The darkness of the coma. And then, the enormously bright sunlight the day I first emerged from the cocoon of Abbott Northwestern Hospital’s Rehabilitation Clinic. I had awakened four weeks before, and had been in the inpatient rehab for roughly ten days, when my physical therapist suggested that we go outside. I panicked. I had not been outdoors for nearly two months. We went down the stairs—I had recently learned how to walk again and was trying to master stairs—and into the mid-August, midday sun that was so bright it scorched my eyelids back to darkness. Disoriented and unsteady, I stumbled into a single line from a poem by Ingeborg Bachmann: “and sometimes a splinter of dream-saturated marble pierces me in the eye, where I am most vulnerable to beauty.”

 

Ein Splitter traumsatten Marmors. 

 

She did not speak. 

 

One night, in the rehab wing of the hospital, in the ongoing dream-state in which I stumbled my way through those strange post-darkness days, I had a nurse from Senegal. I could hear the slight French inflection in her voice as she was helping me get ready for bed. I spoke to her in French. I don’t remember what I said, but I remember hearing her accent made me yearn to reach out of the darkness to be cradled by her voice. After she left the room, I cried for the first time since I had awakened from the coma. 

But what is odd in this is that, no matter how I tried, I could never hear my mother’s French accent in English. 

 

The prodrome of an ascending sensory loss is particularly suggestive, and the rapid progression to coma is characteristic. 

 

I am ten years old, and we are in Martinique for the winter—hot sun and smells of sugar cane. I am not sure how we fit into the slow life there, the luxury and brutality, with black people inhabiting white houses as cooks and maids, entire black families living with entire white families in the same house. I am told that things are different here than in Chicago. We drive in old Citroëns and Renaults through the island, to St. Pierre, which used to be known as the Paris of the Caribbean until the volcano erupted in 1902 and took all the fine china with it. My mother and the other women talk about how all the inhabitants, white and black, had beautiful china and it was swallowed up by the volcano. This is the fairy tale of the island, the eruption of the volcano giving the island a past and a history so white people can continue to live in houses with black people. 

One year, after our second winter there, an earthquake with a tidal wave destroyed the beach. When we returned the following year, the white sand had turned black with ash and debris. 

Traces of the tidal wave haunted me for years. The enormity and violence of the natural world seemed to fold over our lives, like the silence in our family, its enormity and violence. 

 

My childhood playground was a Cold War missile site.

 

Mornings in Martinique, I eat a baguette with butter and slip into the patois more easily than into the forced French that I am fed in Chicago. The sounds of French are inside of me, yet never as whole sentences. I begin to speak but cannot finish; the French sentences promise to deliver some truth but instead can only hover. I walk around my house, find myself thinking, “il faut que je . . .” but I don’t know what it is I need to do, and then “j’ai envie de faire . . .” but what is it I want to do? The answers remain closed to me, just outside my reach—until my coma, when French was with me in the darkness and I was enveloped by conversations between my mother and grandmother. To want French now is to want my mother fully, to take in the sound of her voice, to hear the accent I never could hear no matter how hard I tried. 

 

It began so quietly that no one could hear it.

 

I fell. Falling into a coma. I fell into a coma. I fell into a coma and we all fall down. 

 

She did not speak. 

 

Through a photograph, darkly.

 

Neurologic: Mental status exam: closes eyes frequently, complains of fatigue. Alert and oriented to self, place, month, year. Follows 1 and 2 step commands. No word finding or naming difficulties. Recalls 1 of 3 words at 5 min. Can recite months forward. Cannot state backwards. No neglect. Able to read sentences but with some difficulty, closes one eye, needs glasses.

 

When I woke from the coma, I had trouble moving my eyes. The muscles had atrophied over the five weeks and had become frozen, so that I could not move my eyes from side to side. After the weeks suspended in the underseas of unconsciousness, in a space known in Arabic as the barzakh—an isthmus, a narrow, liminal place between being and nothingness, life and death—I had emerged from the hazy world of the coma into the bright sunlight. It was as if, with the muscles fixed in place, I could see both back into the darkness of the coma and ahead into the light upon which I had stumbled.

_____

About a year after I had recovered, I was in the same hospital to have lab work done. On impulse, I decided to find the ICU where I had spent most of the previous summer. I asked the lab technician where the ICU was. She looked at me blankly, as if I were speaking a foreign language. I asked again for directions to the ICU. Suddenly, as I was saying it, I heard myself asking her where to find the “I see you.”