Posts Tagged ‘pathology’
March 7th, 2011 | Meera
Preface and Disclaimer: The following is an account of one family’s experience with a complex childhood malady. It is in no way intended to represent universal facts about anorexia nervosa, infantile anorexia, or the diagnosis known as failure to thrive. It is published here as a gift to Regina, whom I “met” last year when I was researching hunger and who opened her life to me with extraordinary generosity. Any errors in the science are mine; any truths you may find in it are due to her honesty. I hope you find Regina and Eicca’s story as compelling as I did, and that you approach it with respect.
You think of hunger as a panther with a step like snowfall, prowling at the edges of your sight. You think of hunger as an itch yawning across your skin, demanding to be scratched. You think of hunger as a man cracking a whip, and you its slave. The way you know hunger is the way you know pain, the way you know fear, the way you know love: as a force that inhabits the body. It lives in the spasming of muscles in your gut, the strange internal seething of gases and fluids. You do not think of hunger as something you must find—like a lost ring buried deep beneath a sofa cushion. Like a little boy gone astray.
The sensation we recognize as hunger is the result of a deft physiological machinery: invisible to us, but nevertheless highly efficient. Dozens of chemicals of varying importance are believed to be involved in the complex play of reactions that results in the arousal of appetite, not all of them yet identified by science. A few central pathways, though, we can describe with reasonable confidence—a few guides for those who seek to find.
Here is one, for example. Go long enough without eating, and cells in the gastrointestinal tract secrete a chemical comprising a single chain of 28 linked amino acids, first discovered in 1999 and known in the scientific literature as ghrelin (but immediately christened “the hunger hormone” because of the role it plays as a messenger for an empty stomach).
Ghrelin seems to work by stimulating specialized receptors at the end of an abdominal branch of the vagus nerve: a bundle of fibers that wanders a remarkably long and complex path through the body and connects, at its zenith, to the brain. With these receptors activated, a signal vibrates up the length of the vagus nerve until it reaches an appetite-controlling center in the hypothalamus. The message it carries is as simple as it is insistent: We’re running on empty!
And then, before you know it, there you are. Losing your train of thought. Feeling saliva prickling at your mouth like tiny bees. Arrested by the memory of a particular sandwich you once ate in a restaurant in Boston, sweet with cranberry chutney and salty with Havarti cheese that melts like cream on your tongue.
This is how it works, how it’s always worked. You are born with the blueprint for hunger tattooed onto your cells, an appetite for food that is inseparable from the appetite for life. This is how it works—until it doesn’t.
It is an icy January day in Oulu, Finland, on the eastern shore of the Baltic sea, when the most wanted child on earth is born. His safe arrival has been a long time coming—following, as it does, eight years of attempts to conceive, four intrauterine inseminations, two cycles of in vitro fertilization, one miscarriage, and 38 weeks of anxious pregnancy. The mother of the most wanted child on earth touches her son’s warm cheek: soft as a rising bun under her finger. She whispers his name: Eicca. She whispers munkki, my little munkki: the Finnish word for doughnut. She thinks: I have loved you from all time. She does not know that, in one way at least, this baby is incomplete: he has come into the world without his hunger.
When Regina is hungry, it is the junk food she grew up on in San Francisco that tugs at her thoughts. She dreams of Cheese-Its the crackling color of a neon traffic sign, Carl’s Jr. fries that leave a film of hot, delicious oil on her fingers. She has an especially fanatical affection for the sweet-salty taste of Reese’s Pieces. But because she has always been overweight, Regina usually tries to hold herself in check. In time, she will wonder about this. Could her own lifelong struggle to combat what sometimes feels like an immoderate hunger somehow have affected Eicca’s appetite? Could he have inherited a subtle, invisible disposition to quell his hunger? These questions, when they come, will be at once utterly absurd and completely irresistible. But that will be later.
At 27 weeks, Regina is nervous. The time has come for her to take a glucose challenge test to see how efficiently her body processes sugar. Because of her weight, she is at a high risk of developing gestational diabetes, a temporary form of high blood sugar that only occurs during pregnancy. It doesn’t usually threaten a pregnant woman’s health, but if left unchecked gestational diabetes can lead to problems for the baby she carries, including jaundice, excess growth, or respiratory distress. The night before, Regina and her husband Marco sit together and eat an entire box of chocolates, piece by piece. If she fails the test, Regina reasons, this will be the last time in months she’ll get to indulge her sweet tooth. She had better savor this night while she can. The Finnish chocolates are no substitute for Reese’s Pieces, but she is nearly seven months pregnant and she is hungry and she is not ashamed to say that they are good. When the box is empty, Regina laughs. She puts her hands on her belly, full of chocolate and Eicca. Then she fasts for ten hours. By the time the little cup of glucose slips past her lips, she is starving. But she passes the test with flying colors.
For Regina, as for most of us, food is temptation and memory and indulgence and pleasure, all at the same time. This is how it works, how it’s always worked. This is how it works, until it doesn’t.
In retrospect, the signs that Eicca’s hunger is missing are present almost from the start. At Regina’s breast, he drowses instead of drinking. When he does suckle, it is slow and fitful, and very quickly he stops, turns his head away, and falls asleep. It is as if eating is a pointless tedium instead of what it should be: the central occupation of his life, the drive behind the doubling of his cells and the development of his brain, his heart, his reaching fingers.
Even when he has gone three or four hours without feeding—the length of time it takes most infants’ stomachs to empty to the point of discomfort—Eicca shows none of the behavioral marks of newborn hunger described in a set of child feeding guidelines issued in the European Union. No increased alertness or activity, no rapid eye movements, no hand-to-mouth and suckling motions, no soft cooing or sighing, sucking sounds, no fussiness. Watching Eicca as time stretches out since his last sip, the last second is the same as the first. At night, it is the sound of her alarm that startles Regina awake for feedings; Eicca never wakes or cries for food.
You do not think of hunger as something you must find.
Soon, Regina and Marco switch to feeding Eicca bottled breast-milk, supplementing it with a store-bought formula. Even so, at five weeks he is drinking less than seven ounces of food every 24 hours, a fraction of the recommended daily intake for an infant of that age. But since he is growing, if slowly, Regina puts aside her concern.
At seven weeks, a nurse comes to the house to check on Eicca and weigh him—standard practice in Finland’s universal health care system. Though all seems well at the appointment, the next morning brings a call—the voice on the other end of the line brooding and uneasy.
“I’ve been up all night worrying about your baby,” the nurse blurts out.
The word anorexia literally means “without appetite;” but for most adolescent or adult sufferers of the disorder the label is precisely false. What studies of women with eating disorders show is that ghrelin levels in the blood plasma of anorexics are significantly elevated compared to healthy subjects—and they don’t drop after meals as in normal controls. The findings help to explain why many anorexics, especially in the early stages of the disease, report feeling an almost constant sensation of hunger. Besides a distorted view of your own body, this might be one of the deepest reasons for someone to deliberately lose an appetite—to push it deep beneath the cushions—the fear that if you once began to eat, you would never stop.
It’s clear, of course, that this terror is groundless—pathology, not prescience—but it has an ancient precedent. We have lived for millennia with a dread of the hunger we harbor. In Greek myth, when the mortal Erisichthon strikes down an oak tree beloved of Ceres, she sends Famine to breathe herself into his veins, like poison, as he sleeps.
When he awoke, his hunger was raging…What would have sufficed for a city or a nation was not enough for him. The more he ate the more he craved. His hunger was like the sea, which receives all the rivers, yet is never filled; or like fire, that burns all the fuel that is heaped upon it, yet is still voracious for more….at last hunger compelled him to devour his limbs, and he strove to nourish his body by eating his body, till death relieved him from the vengeance of Ceres.
Inhabited by this ancient fear, anorexics train themselves to master hunger. Some even grow to love the painful, drawing sensation of an empty stomach for what it represents: a virtuous triumph over desire. One textbook on anorexia quotes a patient whose symptoms first began at 17. The immediate effect of self-starvation, she explains, “was a feeling of exhilaration verging on euphoria. The hunger was hell…but the hell was far outweighed by the reward.”
You think of hunger as a man cracking a whip.
When anorexia occurs in infants, its rewards—if they exist—are much harder to understand. First described in detail by pediatric researchers Irene Chatoor and James Egan in the 1980s, infantile anorexia typically makes an appearance when a child reaches 3 to 6 months of age, a critical point of transition between bottle-feeding, spoon feeding, and self-feeding. The disorder originates, Chatoor has asserted, in a pattern of maladaptive interactions and conflict between an infant and his or her caretaker, and reflects a young child’s growing struggle for independence. “The infant refuses to eat in an attempt to achieve autonomy and control with regard to the mother,” she wrote in 1989, “a maneuver that serves to involve the mother more deeply in the infant’s eating behavior and to meet the infant’s need for attention. Mother and infant become embroiled in a battle of wills over the infant’s food intake. The infant’s feeding is directed by his emotional needs instead of physiological sensations of hunger and satiety.”
While this description doesn’t fully explain the source of Eicca’s troubles—which start much earlier than those of the infants in Chatoor’s studies, and seem almost congenital—its dour pronouncements seem to grow more accurate over time, as a vicious circle of insistence and refusal forms. The more preoccupied Regina becomes over her son’s lack of interest in food, the longer and more fraught mealtimes become, until she is literally trapping him into his chair with one stiff, outstretched arm while she spoons carrots and peas into his mouth with the other. While he screams. They are on vacation in Hawaii, the air coming through the windows fragrant with frangipani, and every morning it is on the schedule. Force-feeding Eicca in paradise.
Though infantile anorexia is considered a psychiatric disorder, it is not infrequently associated with physical conditions like gastroesophageal reflux disease, the abnormal tendency for stomach acids to flow backwards to the gullet and cause food regurgitation. By the time Eicca is six months old, he is vomiting as often as ten times a day, sometimes several times an hour, despite being on Zantac: a powerful ulcer medication designed to block acid production in the stomach. The air in the apartment acquires the sharp, sour smell of vomit; you can smell it as soon as you walk in the door. At last, driven by a kind of exhausted pragmatism, Regina begins feeding Eicca in the bathroom, watching him closely in the mirror for signs of an imminent purge. When he throws up, she holds him over the bathtub, tears streaming down her face as the hot milk splashes onto the sleek porcelain. Then she wipes him clean and tries again.
In early 2009, just before Eicca’s first birthday, he and Regina move into a tiny room at the hospital—Marco, who has to work, sleeps there with them at night. Every day, five times a day, for three weeks, three pediatricians, a gastroenterologist, a speech therapist, and a bevy of nurses orchestrate Eicca’s feedings. They film him eating. They time his meals. They measure and record what he consumes. And all the while they watch him for signs of hunger or aversion, like wildlife biologists encountering a new species. Some days are good: once, Eicca consumes 100ml of milk, 50ml of blackcurrant soup, 80 spoonfuls of pureed mango yogurt, meat, and potatoes, 20 spoonfuls of porridge, a few bites of cheese, and the corner of a piece of bread. Regina cannot believe her eyes.
But mostly, meals are just like they are at home. The very next day, he eats nothing except for a few bites of pear, a few bites of bread, and a few sips of milk. At the end of three weeks, Eicca is still turning his head away from food. He has lost one kilogram.
Sharman Apt Russell, author of Hunger: An Unnatural History, explains that motherhood made her searingly alive to the improbability and injustice of a hungry child: “I gave birth to my daughter and fed her my body. Later, I had a son and he, too, drank from me. I was feeding the world. This was not aggrandizement so much as myth. At the center of our life, we are Eve or Prometheus or Odysseus. At the center of my life, I fed the world, and yet children were dying.” At the center of her life, Regina offered her son the world, and he refused it—would, if she hadn’t fought with him, have died for lack of all she had to give. The improbability, the injustice of this.
The Oulu University Hospital doctors who counsel Regina and Marco about Eicca have a mantra. They will repeat it over and over through the months and years of hospital visits, say it so many times that hearing it will make Regina want to scream. You must let him find his hunger, the doctors insist. Just give him a chance and he will find his hunger. As if Eicca’s appetite has been accidentally misplaced, forgotten in a corner like one of the toy train cars he loves to race around the house. As if sooner or later he will simply realize that he needs it, this hunger of his, and go looking. As medical advice, it borders on the magical. But—at least for the moment—it is all that science has to offer.
As he gets older and continues to show almost no interest in food as a source of pleasure, Regina and Marco sometimes resort to spooning butter into his mouth, letting him dip both hands into a jar of pure sugar and smear the grains onto his tongue. The rules of healthy childrearing that normal parents set for themselves—give your child lots of proteins and vegetables, keep them away from junk food—are nothing but mythology. When Eicca is two years and seven months old he falls briefly in love with a particular brand of Finnish shortbread cookie, stuffed with a hazelnut cream filling and sprinkled with chocolate chips. Regina is overjoyed.
Love, of course, is relative. Falling in love, for Eicca, means he will cry to have a package opened, then eat one tiny corner of one cookie before turning his head away. And yet it is a blessing. A glint, perhaps, of some lost bright thing that might someday be found.
June 16th, 2009 | Meera
I don’t know what it’s like for you, but there are days when it feels I’m like meeting someone for the first time. Her features seem foreign to me, and that, in its way, is not so far from the truth.
I don’t know what it’s like for you: there are days when I am most comfortable if the sight is brief. Best if I have a specific task, like brushing my teeth or plucking at the ragged curve of my eyebrows until one bends to match the other; best if I can file the required report and move on, before too much is seen: Go ahead and wear that shirt. It looks well on you. No, there is no scratch on your cheek. It must have been a momentary twitch of a nerve… Yes, you look as tired as you feel. More tired. There it is. It’s not that I am ashamed, understand; my self-esteem is not a dress that has fallen and must be tugged back up. It’s not that I never stare; oh, stare I do. But there’s something unnerving about it.
I don’t know what it’s like for you. For me it’s a question of manners. Too direct a gaze creates an impossible challenge: which pair of eyes will drop first? I know that both are mine. Yet how strange is what I perceive—that I am at home inside one set of arms and legs, and at the same time these very limbs are hanging quite happily on a separate frame. That I am twinned.
I live quite comfortably with this contradiction, of course; but I suppose I haven’t always.
Babies aren’t born with what psychologists (somewhat ploddingly) call “mirror self-recognition.” It takes many months before they’re able to draw an unfaltering line between their reflections and themselves, to comprehend that the stare that meets their own so fearlessly does not belong to another human being. It’s not just a question of waiting until certain inevitable developments take place in the brain, either—though that is important. A light bulb doesn’t just blaze on one day and transform stranger into self. No; in fact, developing the ability to recognize one’s own body in the mirror seems to be a surprisingly rational undertaking, and one that builds over time.
In 1979—the year I was born, naked of a sense of self— two scientists named Lewis and Brooks-Gunn tumbled a series of burbling 12-month-old babies in front of a mirror, to see what they could see. The vast majority of them, the experimenters observed, engaged in something they called “contingent play”—so named because the movements of a reflection are contingent upon one’s own movements.
Having noticed that there was a being opposite them in the glass, and having perceived that the behavior of this being seemed oddly familiar, the babies would proceed to carry out clever studies of their own. Staring at their reflections, they would perform the same series of movements over and over again, each time watching intently to see if the strange creature in front of them would follow their lead correctly. They bobbed their heads up and down, bounced their chubby bodies enthusiastically, carefully waved their arms back and forth, all the while with eyes growing wide as they began to clarify and confirm the fact that they possessed a perfectly synchronous imitative partner who would do all that they did at just the same moment. These early play sessions seem to be a necessary first step towards claiming one’s reflection as one’s own.
(They are not sufficient, for it is possible to recognize that your movements dictate those of another without recognizing that the two are one and the same. The full understanding that the face opposite you in the mirror is your own does not generally arrive until late in the second year of life, according to subsequent studies. When that understanding comes, it can truly be described as self-consciousness. One common test of mirror self-recognition is to dab a spot of rouge on a child’s nose, then place them in front of a mirror. A sheepish, or frustrated, rubbing at the spot is the positive indicator researchers are looking for.)
But listen; am I the only one who is astounded by the canny, systematic tests those children conducted? Am I the only one who went straight to the mirror to reenact them, nursing a tiny thrill and half-hoping to catch my other self shifting her neck just a heartbeat too late? Because I’ll tell you what the Lewis and Brooks-Gunn study says to me. It says that seeing yourself does not come easily.
Let’s put it this way: to know an apple, say, is straightforward. Hold it in your palm; take in its dangerous crimson; scrutinize its glossy skin. It is entirely self-contained. Its apple-y nature is self-evident. To know your own face in the mirror is different. You have to slide into the apprehension sideways, gather together a body of physical evidence and reason your way towards the truth:
When I nod, she nods. When I stare, she stares back. Her arms follow my arms; her legs stretch as far as mine. This plant does not move when I move; it is not part of me. This other person moves without my say-so; he is not part of me. Only she, with her skin so brown and her feet curling under her like frightened mice—only she moves with me. So. This is who I am. These are the things I am made of. These are my boundaries in space.
I don’t remember collecting those proofs. I don’t remember building my sense of self like this, brick by brick with my baby-brain. But I believe that I did, and you as well. And I’ll tell you something else: I believe that we’re in good company. Elephants, apes, and dolphins can learn to see themselves through contingent play, too.
Also, robots. Robots can learn to see themselves. Are you smiling yet? Listen, at the very least, one robot can that I know of—its name is Nico. I read about Nico in this charming paper, published last year. In it, two Yale computer scientists show how, with the help of three algorithms that deftly compare data to experience, a robot “can learn over time whether an item in its visual ﬁeld is controllable by its motors, and thus a part of itself.”
First, Nico spends some time—four minutes, to be precise—waving its arm back and forth and carefully noting the shape of its own movements. Then, it’s ready to look itself in the eye, so to speak. Nico is placed in front of a mirror, whose contents are captured in a streaming image by a wide-angle lens embedded in what would be Nico’s right eye. Carefully monitoring that video stream, the robot continues to motor its arm around in random directions, checking for precisely contingent movements in the reflected scene. It consults the algorithms in its memory, calculating the probability that what it sees is really Nico. Very quickly, then, the robot is able to accurately determine whether it happens to be looking at itself, an inanimate object, or an animate other.
Once it has understood the form of its own arm, learned the way in which its joints shift position—once it has traced the essential outline of its own metallic body—Nico can be said, in a very real sense, to recognize itself. And after that understanding has set in, no one (not even a sly researcher insinuating himself into the scene and painstakingly mimicking Nico’s movements) can fool it. Nico knows exactly what it is.
But achieving that knowledge demands two things, both of which are clearly spelled out in the title of the Yale paper: time and reasoning.
Seeing yourself doesn’t come naturally; it’s not fundamental to your understanding of the world in general. And it can’t be accomplished simply by having someone else tell you who you are in the glass; it’s not a fact you swallow, but a judgment you come to. At first—ask a baby; ask a robot—it’s not at all silly to narrow your eyes at that odd-looking stranger and wonder why they’re copying what you do. At first, surely it’s right and proper to be suspicious of the shade in the mirror.
When it comes right down to it, I mean, you might be wrong about the whole thing.
Here’s the thing: When I think of myself, what comes to mind is less a single clear and shining image of my own face than a shifting sensation of me-ness: a complex amalgamation of memories, ideas, and sensory impressions. I am the one around whom my husband’s arms wrap, the pressure of his musculature against my own clearly defining the shape of my body. I am the one who lay at the foot of my parents’ bed as a child, listening to the hum and click and drip of their ancient air-conditioner and imagining the sounds growing larger and larger until they merged with my own heartbeat. I am the one who frets for hours before phone calls, sweaty and pale, who dances while she cleans, who hates hair in her face and still remembers the sharp, dusty taste of the whiskey sours she used to drink because she liked the way they made her tongue twist up inside her mouth.
I am the one who feels the way I feel, thinks the way I think, not—or not just—the one who looks the way I look. And how do I look, anyway? No matter how many tests I run, no matter how much I grow to trust the image before me in the glass, the sight of my own face is always mediated through layer after layer of tin, silver, glass, copper, paint. I’ve never seen it without a mirror as middleman, without a bender and broker of light. What if the person I’m seeing isn’t who I think it is at all? Why should their mere resemblance to me be sufficient identification?
I live quite comfortably with this suspicion, of course; but not everyone does.
People with a extremely rare disorder known as Capgras delusion come to believe that those whom they love have been replaced by impostors. These strangers are identical to my mother, my sister, my brother, Capgras sufferers say, but they are not them. They are different people entirely. Their features—remarkably similar! The close resemblance is uncanny! But no; they are certainly not the ones I know. They are frauds. I do not recognize them.
The extent of the delusion is such that, confronted with their own reflections, Capgras patients are apt to startle violently. Why, I’ve never seen this person before! they may exclaim, in horror and disgust. Some engage in the same kind of contingent play that babies do, pinching themselves and waving their arms, keeping a chary eye on the ghoul in the mirror—but unlike babies, they will not be satisfied by the paltry evidence of their own eyes. And when repeated gazes into a mirror call up the same disagreeable stranger again and again, people with Capgras may accuse their likenesses of deliberately appearing in their lives solely to stalk and torment them. Capgras delusion steals a person’s ability to see their own true selves, and replaces it with an uninvited guest who cannot—will not—leave them alone. I confess, I sympathize.
But how exactly does this happen? Capgras patients are otherwise, for all intents and purposes, normal—whatever that means. Their vision is not impaired, and neither is their cognitive functioning; nor are any aspects of their memory. Their negative emotional response to their loved ones and their own reflections is bizarre, to say the least, but in some sense it’s also perfectly lucid and reasonable. It matches, after all, precisely the way you would expect someone to react if everyone in their inner circle of intimates had been replaced by an impostor. (And wouldn’t you yell if your beloved reflection suddenly turned into someone you knew, deeply and profoundly, wasn’t you at all?)
So what causes this extraordinary disconnection between vision and belief, between seeing a person, recognizing their features, and correctly identifying them as someone whom you know and love? The inimitable UCSD behavioral neurologist V.S. Ramachandran has a lovely theory about this. Look, he says: Sensory information about objects the eye sees is transmitted from the retina into visual centers in the temporal lobes. Here, the object is identified: This looks like a teapot, this looks like a poodle, this looks like my sister. Capgras patients can accomplish this part of seeing perfectly well.
But after an object has been identified, the brain continues to work. It sends its decoded information to the limbic system, which is a complex network of brain structures that enables the perception and expression of emotions. One of the first places this visual information passes through is the amygdala (the name means almond-shaped, which it is). Ramachandran explains that the amygdala is responsible for labeling the emotional content of what the eye has seen. This object is beloved, the amygdala concludes, and should trigger affection; this one is despised, and should trigger hate.
This visual data, then, becomes colored with a layer of emotional interpretation; it travels on towards other structures in the brain. At its final stop, what began with a glance at a face sets in motion at last the physiological responses that enable a person to actually experience the appropriate emotion: things like a speedier heart rate, higher blood-pressure, and a light film of sweat covering the skin. (For what is emotion but the brain, talking to the body, talking to the brain?)
You might imagine that a rather odd sensation might occur if this process were disrupted somewhere after the point where an object is decoded and before the point where the emotion that ought to be associated with it is actually experienced. Ramachandran did. He asks:
Is it possible that in this patient there has been a disconnection between the face area of the temporal lobes and the part concerned with the experience of emotion? Perhaps the face area and the amygdala are both intact, but the two areas have been disconnected from each other. When (the patient) looks at his mother, even though he realizes that she resembles his mother, he does not experience the appropriate warmth, and therefore says ‘Well, if this is my mother, why is it I’m not experiencing any emotion? This must be some strange person.’
I think of a person like this, and how they must feel when they stare at the mirror, eyes fixed full upon their own faces and hearts as hard as stone. Do they never, now, experience the comfort of being alone with themselves?
It hasn’t been proven, so far, the hypothesis that the Capgras delusion is caused by the neurological disconnect that Ramachandran describes—but its elements catch at my heart. It’s not enough to simply identify a person in order to truly know them. The brain needs more. It’s not enough to match the movements of a reflection to your own in order to recognize it as yourself. The brain needs more. Seeing yourself does not come easily. It requires time. It requires reason. And, beyond all that, it requires some measure of affection.
Knowing this, I return to my counterpart in the mirror—the one who still seems so strange to me sometimes—and am moved to tenderness. I look on her for a long moment, studying the shape of her lips, the brown of her eyes. I forgive our separation, forget the times when her eyes have challenged mine or mine hers, and gaze.
Because if I do not see her, how will I love her?
And if I do not love her, how can I see her?
If you’re fascinated by reflections, I can do no better than to recommend the deep and intricate treatment of the subject in Mirror, Mirror: A History Of The Human Love Affair With Reflection. I found my copy in the stacks of Powell’s Books in Portland, OR, on my honeymoon.