Head Cases: Stories of Brain Injury and Its Aftermathby Michael Paul Mason
Head Cases takes us into the dark side of the brain in an astonishing sequence of stories, at once true and strange, from the world of brain damage. Michael Paul Mason is one of an elite group of experts who coordinate care in the complicated aftermath of tragic injuries that can last a lifetime. On the road with Mason, we encounter survivors of brain/i>
Head Cases takes us into the dark side of the brain in an astonishing sequence of stories, at once true and strange, from the world of brain damage. Michael Paul Mason is one of an elite group of experts who coordinate care in the complicated aftermath of tragic injuries that can last a lifetime. On the road with Mason, we encounter survivors of brain injuries as they struggle to map and make sense of the new worlds they inhabit.
Underlying each of these survivors' stories is an exploration of the brain and its mysteries. When injured, the brain must figure out how to heal itself, reorganizing its physiology in order to do the job. Mason gives us a series of vivid glimpses into brain science, the last frontier of medicine, and we come away in awe of the miracles of the brain's workings and astonished at the fragility of the brain and the sense of self, life, and order that resides there. Head Cases "[achieves] through sympathy and curiosity insight like that which pulses through genuine literature" (The New York Sun); it is at once illuminating and deeply affecting.
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Stories of Brain Injury and its Aftermath
By Michael Paul Mason
Farrar, Straus and GirouxCopyright © 2008 Michael Paul Mason
All rights reserved.
When the seizure comes, it hits him like an avalanche, enveloping him in a roaring fog. In a matter of seconds, it sweeps Cheyenne Emerick in its throes and slams him to the ground. The premonition is slight: a tingling sensation, a rushing dizziness, an emotional surge. In the midst of his daily routine, a wave of anxiety and stress overtakes him. Cheyenne's heart begins to thump in his chest and he starts to pace. Even though this has happened a thousand times before, each seizure is more frightening than the last. Cheyenne has survived all the others, but there is no guarantee he'll survive this one.
It could happen anywhere. It has happened in restaurants, in bed, in cars, and in front of dates, friends, and family. Anyone in Cheyenne's presence might bear witness to his most carefully guarded secret, a secret he half keeps in order to protect those around him and half keeps because seizures are the very inversion of physical grace, harmony, and beauty. Sufferers can foam at the mouth, make bestial utterances, and lose their continence. Seizures subject the human body to its most ugly, embarrassing, and chaotic contortions.
"I can only tell how intense my seizures are by the look on other people's faces," says Cheyenne as he wipes his kitchen counter. "They're always, always scared out of their minds. I've even seen Dragline shivering in the corner afterwards." Dragline is Cheyenne's English mastiff. On his haunches, he takes up half the small kitchen. It's hard to imagine him frightened of anything.
"Right before I go unconscious, that's when the hallucinations start up," Cheyenne explains. In the early stages of his seizure disorder, Cheyenne didn't hallucinate at all, but now the presence of hallucinations suggests that his seizures have strengthened in their severity. He hears a repetitive thumping sound, similar to the pulsing air from a nearby helicopter, and his mind goes delusional. He may back up to a corner, thinking that he is being surrounded by people who are not there. He may think that he is in another place having a seizure, a delusion of displacement. Recently, he had a seizure in his apartment and thought he was in a faraway city bus surrounded by strangers.
While his mind is elsewhere, Cheyenne's body is completely out of his control. His muscles tighten and his joints wrench themselves so violently that he has torn muscles, sprained ankles, and lacerated his skin.
"I've bitten my tongue so hard that, for several days, the act of eating brought tears to my eyes," Cheyenne says.
The extent of bodily damage depends largely on where Cheyenne is at the moment the seizure hits. If he lands near a wall in his apartment, he might kick through the Sheetrock or lodge his fingers in between a doorjamb. If he only gets a severe rug burn across an ear, it's a stroke of luck. Once he had a seizure while sitting alone in a car and repeatedly bashed his head against the dashboard. He awoke to "a fucked-up face" and a pool of blood in his lap.
At the seizure's most extreme, even breathing is bound and labored. The contortions and the writhing and choking last several minutes, then the seizure fades as quickly and mysteriously as it first arrived. Immediately, Cheyenne starts gasping. The hyperventilating is a gift, a sign telling him that he has survived. After a minute or two, his name comes to him and he begins to piece his reality together again. He becomes aware of his surroundings and of the gaping jaws of bystanders and paramedics. It takes a full fifteen minutes for everything to come back, assuming everything does come back. Cheyenne isn't quite sure what the seizures are costing him neurologically, but he and his mother have a very clear idea of their cost on a personal level.
Most of us have had only a fleeting taste of what a seizure feels like. In the initial stages of sleep, as our mind begins to form hypnagogic phenomena, the fragments of dreams, we creep slowly toward unconsciousness. At some point, our bodies might jerk suddenly as though we've lost our balance. Your arms stiffen, your torso heaves, your legs jump out. The fleeting electrical catch in your frontal lobe that shot your body rigid is the same type of dysregulation felt by people who suffer seizures, only they are suspended in that spasm for minutes at a time, and their "twitches" might occur in any given part of their brain, with hundreds of times the intensity.
Anyone who suffers from repeated seizures, regardless of whether the cause is hereditary or due to injury, has epilepsy, the falling sickness. In 1602, the French physician Jean Taxil made a curious observation. In every case of demonic possession he studied, the possessed individual also turned out to suffer from epilepsy. Taxil did not use the observation to dispute the reality of demons; he merely offered the insight in hopes that others might notice the devil's penchant for epileptics. We have since learned that God and his angels also consider epileptics a hot property.
"Something divine can be observed in epileptics," wrote the surgeon Fabricius Hildanus, "for very often, something lies hidden in the bodies of epileptics which is above our power of comprehension." Sacred literature is replete with prophesies, mystical texts, and holy visions that were contributed by such assumed epileptics as Mohammed, St. Paul, St. Birgitta, Mechthild of Magdeburg, Hildegard von Bingen, and St. John of the Cross. It was William James, a prophet of a different sort, who most eloquently defended the epileptic's supernatural states in his seminal work, The Varieties of Religious Experience:
To plead the organic causation of a religious state of mind, then, in refutation of its claim to possess spiritual value, is quite illogical and arbitrary ... Otherwise none of our thoughts and feelings, not even our scientific doctrines, not even our dis-beliefs could retain any value as revelations of the truth, for every one of them flows from their possessor's body at the time.
James goes on to suggest that atypical physiological states might actually operate as gateways to unique, legitimate insights and that to conclude otherwise is obscenely reductive. "If there were such a thing as inspiration from a higher realm," he says, "it might well be that the neurotic temperament would furnish the chief condition of the requisite receptivity."
For years, Cheyenne's ictal experiences gravitated more toward the demonic than the heavenly. Where others sense a cosmic oneness, Cheyenne gets gypped with conflict and despair. Some epileptics achieve a nearly orgasmic euphoria; Cheyenne gets a migraine. He thinks that the dark visits are a type of karmic retribution, a payback for his proclivity toward self-destruction, as though a seizure opens up a personal Pandora's box of pent-up emotions. While few neuropsychologists would side with him, Cheyenne blames a misguided childhood, followed by a reckless adolescence, for his more nightmarish seizures. Only recently have Cheyenne's seizures undergone a transformation.
The lush palm trees covering Cheyenne's place are misleading. His apartment is a shithole, a tiny flat lodged atop a dilapidated house not three hundred paces from Hollywood Boulevard. The thin, chipping planks leading up to his door groan with each step I take, and the swaying handrail only compounds the guess that I might drop through the staircase at any moment. At the top of the flight, the metal screen door is propped open, and Dragline stands in the doorway and affectionately swathes my corduroy pants with a brown, grainy coat of drool when I call Cheyenne's name.
"Be right there," he calls from around the corner.
In a long-sleeved white shirt and blue jeans, Cheyenne looks unassuming and kind. His features are soft and his frame is still boyishly thin, an echo of his past as an athlete. I don't see much California in him, not with his pale skin and unkempt thatch of blond locks, but I do notice the multiple nicks and healed-over scratches that pepper his neck and face and hands. He looks like a man used to being roughed up, which makes it easier for me to see the playwright in him. Without looking up at me, Cheyenne grabs Dragline by the collar and pulls him aside to make room for me to walk in. After a few mumbled apologies about my pants, he hands me a dish towel to soak up the dog slobber and begs me a few steps farther inside.
Cheyenne lives minimally, but not by choice. The few items in his apartment are either donated or found objects: a small television, a twin mattress, a Mr. Coffee coffee-maker, a metal oscillating fan, and a few dumbbells. A relic from former days, an abused snowboard, leans in the corner. Cheyenne feels lucky to have a landline telephone; they didn't check his credit when he called for service. Six steps into his doorway, and you can count the sum of Cheyenne's possessions.
In such small quarters, Cheyenne appears tall enough to divide a room, but his unobtrusive manner retracts the space around him. It's a practiced effect that many brain injury survivors achieve, sometimes to the point of invisibility. Cheyenne, however, has a restless quality that's hard not to notice. After he offers me a seat, he flips open his cupboard and asks me whether I want coffee or water, and although I rarely drink coffee, I ask for it so he'll have something to do. It gives me a chance to watch his motor skills and check out his initiation and sequencing. It takes a certain cognitive level to make coffee, and Cheyenne does it like you would do it, only when Cheyenne does it, it's a relief to me. I like to see brains working well, especially when they shouldn't.
"I've been tired all day, so I just had some iced tea to help wake me up a little," he explains. His hands have a caffeine tremor, as opposed to a marked palsy. He continues talking to me as he makes the coffee, and the complex tasking is another sign. Already, he's in the upper fifth percentile of people I evaluate. It's a pleasure to see him moving and acting so fluidly. Clinically, he presents well, which is another way of saying that it's my guess he's hiding a lot. The only way I'm going to get a good read on Cheyenne is by letting him do all the talking, but I already know the end of our conversation is going to consist of apologies and downcast eyes.
We sit down together at his kitchen table, and Dragline parks himself in front of me and looks at me eye to eye. This is Cheyenne's confidant, I think. He sees the real Cheyenne, day in and out, and he's not afraid. Like so many other people with brain injuries, rage is a part of Cheyenne's injury, but I don't see any signs of it when Cheyenne reaches out to pet him. Dragline leans a little into Cheyenne's hand, and Cheyenne is surprisingly gentle and affectionate with him. I take a cue from Dragline and lean back in the chair, hold the coffee mug in my lap, and cross my legs in a therapist's pose.
"So what's snowboarding like?" I ask him.
Sugarloaf Mountain in Carrabassett Valley, Maine, is a breeding ground for world-class skiers and snowboarders; it's one of the few mountains in New England that garner respect among West Coast aficionados. Known for its slick, icy runs and its steep vertical drops, Sugarloaf lures snowboarding extremists hell-bent on speed and more speed. As early as the late eighties, Cheyenne was regularly hitting sixty miles per hour on the mountain's trails.
"Back when I started, snowboarding was still in its infancy," says Cheyenne. "People used to stop me and ask what I had strapped to my feet."
He earned his chops carving the slopes of Sugarloaf in the late eighties, but as a sport, snowboarding had few real fans and even less respect. Cheyenne and his pack dismissed local competitions as pointless and demeaning, preferring instead to build their own jumps and improvise their own runs along the mountain's uncharted side.
"Because we didn't compete, we had no idea what kind of skill level we were riding at," Cheyenne says, "until we got a visit from Boardrider."
The Boardrider writers were taken aback at the sight of Cheyenne and his friends ripping across ice-packed terrain in their baggy T-shirts and ski goggles (at the time, helmets were considered laughable). They wrote a few sentences about the pack of renegades, commenting on their penchant for risk taking. Cheyenne and his buddies joked about the modest mention they had in the magazine, but soon they found themselves fitted in the newest gear from a sponsor, even though they maintained their anticompetitive stance. As the buzz around them grew, they sensed the time was drawing near. For years, they had set their sights in the same direction: Snowbird. It was the most daring, dramatic mountain the West had to offer, and it was a magnet for the most magnificent snow in the states. When other surrounding mountains got inches, Snowbird always got feet of dry, brilliant powder that padded the entire slope. After the hard-packed slams Sugarloaf dealt him, Cheyenne reckoned that it would be impossible to get hurt anywhere on Snowbird. Flatlight is a type of blindness feared by mountaineers and skiers alike. The high, gray-white sky fuses with the icy terrain, and from certain angles, ground and sky cancel each other out. In flatlight, hilltops vanish, crests and valleys disappear, and the ground ahead looks like an incandescent blur. All sense of depth perception is lost. Hit the slopes at the wrong hour of the day, and you may not see any moguls, tracks, or other telltale signs of the uneven terrain ahead. Because flatlight is a standard hazard for New England riders, Cheyenne and his friends had become overly familiar with the phenomenon. Flatlight never slowed their runs back home, and it certainly wasn't going to interrupt Cheyenne's first run at Snowbird Mountain.
The approach to Snowbird was a sacred moment for Cheyenne. He had already singled out all the right gear the night before. He woke to an alarm clock, the first time in years, and peeked outside. The red morning sun was receding into the cloud cover, hinting at the gray day to come. Cheyenne stretched his legs back while his friends dozed on couches and sleeping bags. He showered, collected his gear, and crept out the door without disturbing anyone. Outside, he paused to listen to the avalanche cannons booming across the valley.
As he rode up the lift, Cheyenne studied the descent, just like he had done a million times back home. He noted that he might want to veer left at that tree with the broken branch, so that he could clear the small patch of boulders below. The drop just beyond the tree looked like a creamy spread, and the landing below like a pillow. From the lift, the jump seemed like a lark — twenty, thirty feet at best. It had snowed several feet the night before, so the landing would be soft and forgiving. The rest of the slope opened up like a six-lane stretch of highway, perfect for bombing.
With a small hop from the lift and a few digs past the skiers, Cheyenne locked his other foot into the binding and eased onto the slope. His board sank deep into the loose powder and the feeling of snow up to his waist was heavenly, like wading through feathers. As he picked up speed, the acceleration levitated Cheyenne up toward the surface of the snow. Until that moment, he had only heard what snowboarding in deep powder felt like. Now, on the powder's edge, Cheyenne became the focal point of balance and grace. The snow billowed out behind him like a jetstream as his body swayed to the contours of the mountainside.
On the horizon, he spied the tree with the broken branch. He was approaching it so fast he hardly had time to remember to adjust his path ten or so feet to the left, to hit the drop-off just right. He tucked and shotgunned it toward the pine, cranked his board ever so slightly to the right, and shot off the cliff in a burst of snow and ice.
If riding at top speed elicited singularity, then flight is the vanishing point. Here, soaring above the treetops, was absolute liberation. There was no thought, no worldly connection at all. In that moment, he was the mountain, the sky, the snow, light and lightness, all of it happening at once.
"When you're going thirty to forty miles an hour and you fly over a cliff and you lightly touch down on a bed of snow, it's really an incredible sensation," says Cheyenne. "There's no other feeling like it on earth."
He cleared the jump effortlessly and watched as the run widened before him. The slope ahead was clear and unobstructed by skiers — it demanded full speed. Cheyenne tucked down on his board, aimed his left hand directly above its nose, and positioned his body for minimum wind resistance. He rocketed down the slope, picking up speed as the ground rushed below him.
Excerpted from Head cases by Michael Paul Mason. Copyright © 2008 Michael Paul Mason. Excerpted by permission of Farrar, Straus and Giroux.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Meet the Author
MICHAEL MASON (born 1971) is a brain injury case manager based in Tulsa, Oklahoma.
MICHAEL MASON (born 1971) is a brain injury case manager based in Tulsa, Oklahoma. He is the author of Head Cases: Stories of Brain Injury and Its Aftermath.
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In the past number of months, I have been a sponge for information related to head injuries. In May of '08, our 30yr old daughter was critically injured in a car accident. She suffered a severe TBI, in addition to other injuries. She spent 3wks in ICU (coma-Glassgow score of 3) followed by 5wks in a rehab hospital. After pushing back against a system that is eager to rid itself of these vulnerable and difficult persons (I cannot call them patients-they are often are not treated as such), she came home to a family, as most do, that was not prepared financially or emotionally to meet the needs of our injured loved one. Additionally, we are left to fumble through unchartered waters as a family, striving to maintain some sense of normalcy with regards to jobs, relationships, balance--while caring for, researching, and striving to best meet the needs of our daughter.
Michael Paul Mason does a great job of expressing some of the very issues we live with every day through his stories about real people living real lives. Of the many books I've read, this has been one of my favorites. "Head Cases" provides insight, through stories of various head injuries, and expresses heartfelt compassion for not only the injured, but for the moms, dads, siblings and friends. It helped to hear from this author about his frustrations with a system that falls far short of meeting the needs of those who've suffered traumatic brain injuries. I don't feel so alone in our quest, nor do I feel so inadequate. We are doing the best we can within a system that desperately needs improvement, not only in understanding, but in providing individualized care and opportunity for those, our loved ones, with serious head injuries.
Our daughter is truly a miracle. She is working hard in her recovery. My heart goes out to all families that walk this way. It is not an easy road. Perhaps someday, with help from the Michael Paul Masons of the world, there will come a time when the road won't be so hard, the journey so long. Reading this book has helped this mom on her road.
Author Michael Paul Mason spent years observing the effects of traumatic brain injuries (TBI) on people while working as a brain injury case manager. He even traveled to a hospital in Iraq, where he was surrounded by wounded patients from both sides of the war. Mason¿s often-futile attempts to obtain assistance for TBI survivors opened his eyes to the plight of this growing population, many of whom who are met with societal misunderstanding and neglect. His experiences also served as a fascinating resource from which to draw while writing Head Cases. In the introduction, Mason presents statistics illustrating the number of people affected by TBI. One such statistic aptly puts the enormity of the situation into perspective: ¿In America alone, so many people become permanently disabled by a brain injury that each decade they could fill a city the size of Detroit. Seven of these cities are filled already.¿ Mason then takes it down to a more personal level by delving into the case studies of 12 TBI patients, including how the injury has affected their loved ones. Among the patients are a snowboarder who experiences more than 120 seizures every month after a catastrophic crash and a former Air Force officer who believes he is dead as a result of encephalitis tinkering with his brain. Even focusing on only a dozen TBI cases, it is evident that the symptoms caused by brain injuries are myriad and not easily treated. Through this journey into the lives of TBI survivors, Mason conveys not only the fragility and complexity of the human brain, but the fact that America is already far behind in the race to adequately treat those suffering from TBI.
Most science books can be dry and textbook-like. This book, written by a skilled writer who knows how to weave a story, tells the story of 12 people who acquired their brain injury through multiple factors 'i.e., auto accident, brain tumors, etc.' and what their life is like now, and how it has affected their and their families' lives. As a sister of a brain-injured brother, this book is truly a testament of what the brain-injured and their families go through. You think you have problems? Read this. You'll never look at your life the same again. Trust me.
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An amazing and touching read. This book is a compassionate look inside the lives of individuals with brain injury. Well written and engaging.
Anyone who has either experience with a TBI either directly or indirectly will appreciate this book. Also anyone with an interest in medical or neurological can benefit from reading Michal Paul Mason's first hand experiences with not only the TBI patients but their families heart wrenching experiences as well. The book puts into perspective where we are today as a society and in the medical study of available help to those who are afflicted with a TBI. The book does suck you in case by case!
This book was definitely a great perspective into the lives of Traumatic Brain Injury patients. There are many different types of brain injuries, which are covered in this book. It is a story of a case manager and his experiences. Intertwined are facts about the brain injuries, how they are caused and how the person is affected. A very interesting read.
...even if you don't know anyone with head injury. It will change the way you view helmets and seatbelts. I've never thought much about head injury until I read this book and realized how quickly and dramatically everything can change.The stories included in the book have transformed both the way I look at brain injured people and how I value my own health. Wonderfully written, can't put down kind of book.
Best book I read in a long time, the writer captivates the reader with his writing style and his compassionate, genuine care for the patients. A must read for any person in the medical field!