She is holding her baby on her lap, straining to handle the size and weight of him. He smiles brightly, staring around the room with the expansive credulity of the very young. Seeing the light shine of my badge, he reaches for it, drool spilling from his lip. It is a sight both icky and delightful, the adorable inattentiveness of infants. He is far to large for his age, six months old and nearly 3 ft tall, with a healthy pudge besides. We are in the genetics clinic, and his mother is clearly worried.
I have been in this room so many times, seen Dr. T deliver so much bad news. I have seen the light die in the eyes of parents as they discover that their child, their almost normal, slightly off child, is afflicted with a disease of developmental delay. Their child will never be normal, never go to college, and never live a completely independent life. It is worse than the fatal diagnoses. The dreams inherent in the birth of a child die in this room, and in their place grows a child that they will struggle to care for, for whom their burden as parents never ends.
This is not one of those days. Her child, the giant, jolly rapscallion currently attempting to masticate my ID, is going to be fine. He has Beckwith-Weidemann syndrome, a genetic disorder of Chromosome 11, causing him to grow vastly faster than his peers. He will reach his full pre-pubertal height by age eight, but as time goes, his curve will approach normal. We will monitor him for heart disease, but once he clears that eight year mark, he will be just as happy and healthy as the next kid.
Her face collapses in relief, her arms tightening reflexively around the overgrown ball of exuberance in her lap. Thank you, she says, as she reaches to shake our hands. Dr. T smiles, the light dancing in her eyes, the weight of thousands of diagnoses removed for a moment. No problem, she says. Its our pleasure.
Wednesday, September 30, 2009
You Two
Epileptics suffer from storms of neural activity. From start loci, waves of energetic chaos criss cross the white matter, triggering uncontrollable tics and movements. We treat this with drugs, with pills designed to prevent these mental typhoons. For some unfortunates, this doesn't work. Their only option is a corpus callosum sectioning, a slice down the middle of their brain, isolating each hemisphere in its own universe.
This can work, breaking the communication lines used to spread the energetic disorder. Oddly enough, the complete isolation of a hemisphere doesn't really lead to much. Our brains are redundant, and one cerebral hemisphere is typically completely dominant. One side (typically the left) handles the speaking, the thinking, the general interaction with society. The other half contributes, but more subtly, and the dominant half can assume its responsibilities.
But the isolated half does not shrivel and die. Each hemisphere has the capacity to support a personality on its own. In the event of a hemisection, both often do. The right brain, marooned and isolated develops its own thoughts and activities, and can interact with the body without your conscious awareness. The right brain sees things you dont, interprets things on its own. It has first crack at sensory awareness from the left side, and its perceptions are subtly altered from yours. It is you, but split off, the moment of conception marked with the downward stroke of the surgeon's knife. It will draw things you cannot see, think things you don't think, and exist as an involuntary passenger in your body.
Our conception of self is a pillar of how we see the world. We are the individual, the observer, the center of our own universe How do we understand it then, when a simple surgical procedure can split us into cerebral siamese twins, two passengers stuck in the same body?
This can work, breaking the communication lines used to spread the energetic disorder. Oddly enough, the complete isolation of a hemisphere doesn't really lead to much. Our brains are redundant, and one cerebral hemisphere is typically completely dominant. One side (typically the left) handles the speaking, the thinking, the general interaction with society. The other half contributes, but more subtly, and the dominant half can assume its responsibilities.
But the isolated half does not shrivel and die. Each hemisphere has the capacity to support a personality on its own. In the event of a hemisection, both often do. The right brain, marooned and isolated develops its own thoughts and activities, and can interact with the body without your conscious awareness. The right brain sees things you dont, interprets things on its own. It has first crack at sensory awareness from the left side, and its perceptions are subtly altered from yours. It is you, but split off, the moment of conception marked with the downward stroke of the surgeon's knife. It will draw things you cannot see, think things you don't think, and exist as an involuntary passenger in your body.
Our conception of self is a pillar of how we see the world. We are the individual, the observer, the center of our own universe How do we understand it then, when a simple surgical procedure can split us into cerebral siamese twins, two passengers stuck in the same body?
How to Give Bad News
Turn off your cell phone (#1). We all do, ostentatiously hitting power buttons before striding into the conference room, med students playing doctor. We enter, pseudo-sad faces plastered over sheepish grins, learning how to deliver the news that our classmate's imaginary husband or wife had died from an imaginary coronary. Our partners sit at the table, five med students playing actor, knowing full well the "news" that is coming.
I sit down (#2), match eyes and keep an open posture (#3), and ask Frank if there is anyone he would like to join him to hear this (#4). I fire a warning shot (#5), informing him that I have some bad news. I tell Frank his wife has died (#6) We aren't supposed to use the words "passed away," apparently they sound too soft. Frank hams it up, histrionically shouting at me, before breaking apart into snickering. I struggle to keep a straight face. I explain what happened, and Frank regains composure, and starts playing along. An apt expression, "playing along," because we are playing, miming through one of the worst parts of life, and the discomfort of the moment expresses itself most handily as hilarious. Through that I try to remain empathetic (#7) to Frank's false misery, and answer any questions (#8) that Frank doesn't really have. I avoid medical jargon (#9), ask if he would like to see a chaplain (#10), and make arrangements for a follow up meeting that in real life (and our imaginary one) would never happen (#11). Finally I offer to take him to see the body (#12).
I've been on the other side of that table. I have heard doctors run through their checklist, the procedure of "giving bad news." In retrospect, I wonder if it has an ICD-9 code, so as to get reimbursed. But even with my perspective it was awkwardly funny, five fake tragic discourses at the same table. Awkwardly funny, until the moment walking out, when you realize that taking part in the worst moments of people's lives is now part of your job description.
Tuesday, September 29, 2009
Pancreatic Punch
Type I Diabetes is usually a juvenile onset. You don't produce enough insulin, you see, so your body reacts poorly, overreacting with a burst of signals to the delinquent cells, leading to further complications. Your cells starve in a sea of plenty, unable to absorb the sugars from your blood, like a starving man paralyzed in a bakery store room. As you can imagine, this is frustrating to your internal chemistry.
My friend developed Type I after a punch in the back ruptured his pancreas. The damage to his pancreas resulted in a leak of pancreatic lipase. His organ dissolved itself, bubbling with disintegrating fat, ultimately calcifying into a saponified white chalk. His islets of langerhans, the most scenic cell pattern extant, failed in their function, and production of insulin dropped off.
We fix Type I with injections of insulin. This used to be costly, the insulin harvested from humans or pigs, until we learned how to convince bacteria to make it for us. You inject the insulin with meals, or twice a day. The insulin opens the door, lets the sugar in, and your body stops its frenetic response. My friend had his insulin stolen once. In Las Vegas, the capitol city of excess, he was pickpocketed. He didn't notice until reaching for his shot. He stumbled into the hotel that night, disheveled and sweaty, reeking with the sickly sweet stench of ketones. His liver was breaking apart fat to feed his starving cells. His cells, starving in the midst of overabundance.
We didn't appreciate the metaphor.
My friend developed Type I after a punch in the back ruptured his pancreas. The damage to his pancreas resulted in a leak of pancreatic lipase. His organ dissolved itself, bubbling with disintegrating fat, ultimately calcifying into a saponified white chalk. His islets of langerhans, the most scenic cell pattern extant, failed in their function, and production of insulin dropped off.
We fix Type I with injections of insulin. This used to be costly, the insulin harvested from humans or pigs, until we learned how to convince bacteria to make it for us. You inject the insulin with meals, or twice a day. The insulin opens the door, lets the sugar in, and your body stops its frenetic response. My friend had his insulin stolen once. In Las Vegas, the capitol city of excess, he was pickpocketed. He didn't notice until reaching for his shot. He stumbled into the hotel that night, disheveled and sweaty, reeking with the sickly sweet stench of ketones. His liver was breaking apart fat to feed his starving cells. His cells, starving in the midst of overabundance.
We didn't appreciate the metaphor.
He Can Read Your Mind
The twelve of us sit there, hovering on the edge of our seats, wondering what the soft spoken man in the purple silk pajamas will do next. Vitiligo emblazons his eyes with a burning white, mirroring the discordant energy vibrating through his frontal cortex. He has schizophrenia, a bad case. But he is vibrant, and happy. He is a 3.5 billion year old supercomputer. 3.6 billion actually, he declares, having had a birthday last week.
Between admonishments to increase our daily quotient of vitamin C, we learn that he can also read our minds. Pointing at each of us, he declares our true names. Mine was Chad. In between fevered typing on an a keyboard only he can see, he exhorts us to stop thinking at him. His hands blur in fevered incantations, and he starts to laugh, happily.
His root problem is based on misbalanced brain chemistry. A neurotransmitter extra here, less there, and his perceptions have altered fundamentally. We can fix this, to an extent. It comes at the cost of a forced personality leveling, a demolition of the peaks of inconsistency. He is paranoid, but ecstatic. He is delusional, and delightful. He is sick, but should we fix him?
Monday, September 28, 2009
The First Cut
The strangest thing about walking into a room of 50 dead people is how completely not strange it was. A bustling crowd of twenty-somethings enters the room, gathering four or five to a corpse and staring at the bulging sheets with a curiosity that can only be described (with a cringe) as morbid. We had heard talks, hours of talks. This is our first patient, they told us. Treat them with respect. We had listened seriously, reveled in the concept of receiving such a gift.
We remove the sheets, exposing the skin of the chest to our prying eyes. It was grey, with the consistency of cold wax, wrinkled and molded into sharp creases by the processing these donor's had endured in order to be with us on this bright and sunny day. We sit there, clinically eying the rubberized flesh of one of our former compatriots on this earth, wondering who was going to open up the newly purchased dissection kit and take the first whack at our patient.
I'll do it, I think, and as I open my mouth a small girl grabs the scalpel, and tentatively slices the congealed flesh under the nipple. She is trying to expose the pectoralis major, and with the imperfect confidence of a newly minted anatomist, she is being defeated by her care for the integrity of the structures. She sits there, delicately peeling back layers of fascia and fat, engrossed in the act of perfect invasion we have all conspired to create.
A proctor walks by, and laughs. At this rate, she says, we will be here all day. She grabs the knife, and slices deep. Reaching in with her tools, she roughly separates the skin and fascia from the chest muscles, and slices off the insertion point of the pec major. She holds up her prize, greasy and covered in bits of what had once been, as Mr. Heston said, People. She holds up the muscle from our first patient, for all the world to see.
Start skinning the arm, she says. So we do.
Agnoscosis
There is a disease to learning about disease. A creeping sickness of the mind, a pathological invasion of your connection to normality, health, wellness. It is unavoidable. They tell us in medical school, we will lose our empathy. With 100% infection rate, this disease creeps into you with every deconstructive factoid you memorize about how the living, breathing, working thing you call your body is actually just a massive cooperative machine running on the knife edge of failure.
The disease is spread by books. You carry these books with you. These books full of stories of pain and suffering. Demographics of disease, people like you, like your parents, and incidence statistics that add up to well over 100% (everyone has, or will get, something...). These books are full of pictures of things that are so obviously wrong. Pictures of organs, once functioning vital parts of a person, of a life, now sectioned, exposed, isolated diseased and alone. The heart, the lungs, expanded, lesioned, granulated, fibroid, decayed, enlarged, or necrotic. These things happen you learn. They happen to everyone. All the time. Every part of your body can, and will, go defunct, fail, and disintegrate.
I traveled this weekend. I flew to visit my girlfriend, to reconnect with my humanity, with the happy parts of life, the hubbub below the skin diminished in importance. But I carried my books with me, and I saw my disease reflected in the revulsion of the flight attendant and the woman sitting next to me. As I studied, as I intently focused on learning the precise etiology and cell patterns of usual interstitial pneumonia, these poor women avoided glancing at the pictures. The disincarnated lungs idly waiting on the page, blackened from coal, crystallized with silicon. Silicosis, Anthracosis, the dry names and concepts associated with death by dust of quartz or coal. I can identify them from their pictures now. But this exposure, a memetic equivalent of coal or quartz dust, flying through and calcifying the pathways of the mind, comes with its own risk. This disease of knowledge is shown in its disconnection, its clinical obsession, and its reduction of the human condition. This disease presents macroscopically in the eyes of others. In the eyes of my fellow passengers I saw disease. Agnoscosis, the sickness of knowing.
The disease is spread by books. You carry these books with you. These books full of stories of pain and suffering. Demographics of disease, people like you, like your parents, and incidence statistics that add up to well over 100% (everyone has, or will get, something...). These books are full of pictures of things that are so obviously wrong. Pictures of organs, once functioning vital parts of a person, of a life, now sectioned, exposed, isolated diseased and alone. The heart, the lungs, expanded, lesioned, granulated, fibroid, decayed, enlarged, or necrotic. These things happen you learn. They happen to everyone. All the time. Every part of your body can, and will, go defunct, fail, and disintegrate.
I traveled this weekend. I flew to visit my girlfriend, to reconnect with my humanity, with the happy parts of life, the hubbub below the skin diminished in importance. But I carried my books with me, and I saw my disease reflected in the revulsion of the flight attendant and the woman sitting next to me. As I studied, as I intently focused on learning the precise etiology and cell patterns of usual interstitial pneumonia, these poor women avoided glancing at the pictures. The disincarnated lungs idly waiting on the page, blackened from coal, crystallized with silicon. Silicosis, Anthracosis, the dry names and concepts associated with death by dust of quartz or coal. I can identify them from their pictures now. But this exposure, a memetic equivalent of coal or quartz dust, flying through and calcifying the pathways of the mind, comes with its own risk. This disease of knowledge is shown in its disconnection, its clinical obsession, and its reduction of the human condition. This disease presents macroscopically in the eyes of others. In the eyes of my fellow passengers I saw disease. Agnoscosis, the sickness of knowing.
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