A brain injury caseworker, Mason has written a collection that features tremendous variety and is extremely engaging, emotionally and neurologically.
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 injuries as they… See more details below
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.
A brain injury caseworker, Mason has written a collection that features tremendous variety and is extremely engaging, emotionally and neurologically.
The New York Times
The New York Times Book Review
Traumatic brain injury (TBI) has been brought to the fore by the war in Iraq, but not only soldiers experience it. Mason, a case manager in Tulsa, Okla., for people living with TBI, writes with passion and urgency about the unheralded but compelling stories of Americans injured in car accidents or through a miscalculation while snowboarding. Their lives are disrupted by seizures, memory loss, psychosis. One of Mason's clients is an ambitious former air force officer who now goes into waking trances in which he thinks he's dead, as a result of a herpes virus emerging from its hiding place to invade his brain. Mason lays out a damning indictment of the health-care system's failure to provide facilities and services that millions like his clients need. He also tells stories of tremendous courage and perseverance as survivors and their families work to re-establish the everyday skills they had before their injury. The strange effects of neurological damage will draw fans of Oliver Sacks, but Mason's poignant and caring accounts of his clients' lives are sure to touch the hearts of a wide range of readers. (Apr.)Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
“Powerfully written . . . Head Cases sounds an alarm bell for our healthcare system.” Oliver Sacks
“Mason deftly conveys the frustrations and inequities of traumatic brain injury . . . [He] performs a valuable service by calling attention to the plight of the brain injured . . . I had come to think of neurological dysfunction as an almost fanciful affliction, its victims like characters in a work of magical realism. Mason has provided a needed, and sobering, account of reality.” Mary Roach, The New York Times Book Review
“One of my recent favorites . . . A sensitive and intelligent work.” Jonah Lehrer, author of Proust Was a Neuroscientist
“Vivid, heartbreaking [and] movingly written.” Irene Wanner, The Seattle Times
- Farrar, Straus and Giroux
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Read an ExcerptHead Cases
By Michael Paul Mason Farrar, Straus and Giroux, LLC
Copyright © 2008 Michael Paul Mason
All right reserved.
The first thing I tell her is that I cannot help. Her son Jake is thirty-four, my age. His gray, bruise-flecked limbs are splayed out on a bed before me; his mouth is dry and agape. I know I cannot help him. I cannot file a lawsuit against the insurance company, I cannot conjure a way out of this dead-end nursing home, and I cannot sucker punch the aloof neurologist or throttle the ignorant psychiatrist. I hold no sway over the waiting list in my own hospital. I explain to her that I can do nothing at all, and she sighs. She is desperate to see Jake in a program where there is a sense of progress and direction. She knows that the rehabs and specialty hospitals are as inaccessible as the moon. She has called them herself, and she knows that nobody can help. She knows I cannot help, but she asks me anyway. She asks, in all earnestness, to do the impossible and find her son a bed, and in my weakness, I agree. It's my job to agree.
Jake turns his head toward me and I suspect he can hear me. If he can respond, no matter how minimally, then he meets the most important criteria. He closes and opens his mouth arbitrarily, but not a sound comes out. I ask him to lift his head and I wait. Nothing. His mother is quiet and nearly in tears. I ask her to turn off thefluorescent lights and shut the door, and when she does Jake exhales faintly. It sounds like relief, like the hint of a response. I ask Jake once more to lift his head. A good fifteen seconds later, his head slowly raises an inch off the pillow, and then drops back down. That's criteria enough for me. His mother grins at me proudly, as though her son just won a marathon. In a sense, he has.
The next two hours find me thumbing through a thick notebook of Jake's medical records, trying to decipher the scribbled progress notes and lab reports, then interviewing nurses and aides and doctors. I spend the last half hour of my evaluation explaining to Jake's mother that this will take months at a minimum, but most likely a year or two-if anything happens at all. She will be my best resource through all of this, I tell her, as I hand her a list of administrators to call and a few forms to fill out. She tells me she will do this and anything else I ask, but she doesn't need to say a word. If she's been through this much already, paperwork and phone calls aren't going to stop her.
Before I leave, she asks for my business card, not because she doesn't already have my number, but because she wants to know my title, she wants to know what kind of person drops everything to go to look at a bedridden man four hundred miles away. I hand her my card and tell her I am a brain injury case manager, and there is the hint of a smirk because we both know that brain injuries cannot be managed any more than a thunderstorm can be managed. They can be endured, accepted, and integrated, but not managed. She clasps her hands around mine, and I say goodbye, and I get back in my car. I am forever back in my car. I turn the ignition and hope for home, so I can lie down next to my wife and rest my hand on the warm crest below her navel.
The hope is false; a singular voice mail from my director asks me if I can drive two hours north to Sioux Falls to assess a woman with brain damage due to a viral infection. Either I drive the two hours today, or I drive back home to Tulsa and drive ten hours up to South Dakota on Monday. I head north and can already hear the disappointment in Christy's voice. When I call her from a filling station outside of Omaha, she doesn't answer and I leave her a message. My marriage unfolds in messages.
On my way up to Sioux Falls, I think about Jake still lying there in the nursing home, and how he has been lying there throughout the past year while I was buying a house and mowing the lawn and attending parties and traveling. He has been lying there long enough for his wife to have given up hope and file for divorce, and he hasn't seen his son in months. Jake is trapped in an awful sense of nowhere, and yet he is still present, still responding, still human. I may not be able to help, but I can act. I can act for Jake, which, right now, is more than he can do for himself.
I don't look for cases; the cases find me. They catch me in airport terminals and waiting rooms, they crowd my inbox and voice mail. A single phone call can send me to Wyoming one day and Indiana the next. During a tough week, I might wind up in a dozen different cities. When I first started traveling, I would forget what city I was in when I woke up, so I would leave a phone book by the nightstand to orient me in the morning. I still forget the city I'm in, but now I leave the phone book in the drawer. The city comes to me sooner or later. Where I am at doesn't matter so much; it's the catastrophe that sets me in motion.
Medicine reserves the term catastrophic for a handful of conditions, and the term fits. Spinal cord injuries sever and parse a person's ability to move and control their limbs and basic body functions. Amputations disintegrate any hope of feeling and sensation. Full-body burns inflict a fierce pain only pharmaceutical amnesiacs can forgive. But chief among the catastrophic conditions is the traumatic brain injury, commonly called TBI. It is an upheaval of physical, psychological, social, and spiritual proportions.
The wry eighteenth-century haikuist Issa wrote, "In this world / We walk on the roof of hell / Gazing at the flowers." Those familiar with brain injury are familiar with Issa, if not by name, then in sentiment. Spend an hour in a room with someone who struggles to maintain eye contact with you and whose limbs are flailing as a result of a simple fall from a ladder, and soon enough a sense of your own vulnerability finds your legs less steady, your mouth a little dry, and your hand slow and cautious. Traumatic brain injury strikes with the concussive ferocity of a bomb; woe to those near its epicenter.
A tap on the head, and anything can go wrong. Anything usually does go wrong. You may not remember how to swallow. Or you may look at food and perspire instead of salivate and salivate when you hear your favorite song. You may not know your name, or you may think you're someone different every hour. Everyone you know and will ever know could become a stranger, including the face in the mirror. When you tell someone you're sad, you may shriek; your entire vocabulary may consist only of groans or hiccups. A brain injury can shatter your notions of the future, splinter your past, and send your sense of time whirling in any number of directions. And that's just the beginning.
A brain injury is never an isolated incident; it affects nearly everything associated with the survivor. It can collapse a family and flatten a business, evaporate friendships and allegiances, overburden a community, and buckle a state's healthcare system. Thanks to antiquated legislation and massive cutbacks, few states are capable of providing even the most minimal level of specialized care for brain injury patients, forcing most survivors to find treatment hundreds of miles from home, if they can find it at all.
Brain injury is a quiet crisis; the numbers are almost too large to make sense. As many as 5.3 million Americans are living with a permanent disability resulting from a brain injury, a full 2 percent of the population. The Centers for Disease Control and Prevention reports that 1.4 million Americans sustain a brain injury each year, and that fifty thousand people die from that injury. Almost a quarter-million people are hospitalized; the remaining number are treated and released from the emergency room. Some of the released go home comforted, only to discover that they no longer have a sense of smell or taste, or that their sleeping habits have changed, or that they can't seem to do their job anymore. There are more undiscovered head injuries in this world than are dreamt of in our medical journals. Only now are we beginning to understand something about the number of known brain injuries.
Reframed, the numbers nauseate. In America alone, so many people become permanently disabled from a brain injury that each decade they could fill a city the size of Detroit. Seven of these cities are filled already. A third of their citizens are under fourteen years of age. Currently, there are at least ninety thousand Americans with a brain injury so severe that it requires an extended stay in a post-acute brain injury rehab, but there are only a few thousand specialty beds, and upwards of 90 percent of them are already occupied. The severely brain injured are not getting the treatment they need-they're getting mistreated through neglect, misplacement, and isolation.
Numbers, however, are not lying in hospital beds, nor are they languishing in mental health asylums and prisons. A brain injury has a way of exposing humanity at its most vulnerable, fragile, and determined. Because the brain is composed of a million billion synaptic connections, each injury to the brain is as unique and complex as the life it affects. No matter how much detail a person's medical records indicate about their injury, the record is only a shadow, a small hint, at the human behind the injury. In the leveling world of TBIs, soccer moms grow heroic as soldiers, drug addicts transcend to the holy, the holy lose hope, and great egos give way.
The sequence of events goes something like this: the brain gets damaged, and two months later, the million-dollar insurance policy is depleted and the patient is shuffled out the door with a shrug of shoulders. A course of treatment that should have lasted years is cut short before it even starts. Bereft, the family starts mining libraries and websites and social service agencies for anything and anyone who can make sense, who can act. Meanwhile, the TBI survivor gets bumped from nursing home to psychiatric ward to emergency room to homeless shelter to group home and elsewhere. They subsist in a medical purgatory. For all their determination and perseverance, the caretakers and the patient wind up shortchanged with me. I show up as embarrassed as a fireman late for a fire.
Case managers number in the tens of thousands, brain injury case managers number in the tens of dozens. According to the Case Management Society of America, case management is a "collaborative process of assessment, planning, facilitation and advocacy," but the definition is genteel. Case managers are troublemakers and vigilantes. I became a brain injury case manager through a series of career miscalculations; I had accrued an uneven set of skills that included writing and mental health work, and found myself a misfit in most clinical settings. The job not only required a familiarity with medical facilities, but also demanded an exacting level of observation, one that could be translated into a comprehensive evaluation of a complex injury and eventually used as a powerful advocacy tool. My ears remain mine, but my voice belongs to the patient.
Of all the medically challenged injuries, traumatic brain injuries require the most involvement and cost over time. A hospital finance director in Boston once told me that he had never met a family that was financially prepared for the cost of a brain injury. It takes, on average, four million dollars over the course of a lifetime to treat a TBI. One person may require two medical caretakers around the clock, indefinitely. Another may benefit from a simple standard treatment lasting three months. But at a cost averaging a thousand dollars a day, most people can hardly endure the financial burden of one week's worth of rehabilitation, much less a stay that should last months or years.
* * *
The goal is to get a survivor unstuck, to move them from a stagnant setting into a life of greater independence. If the severity of their injury warrants it, their best chances for recovery lie in brain injury rehabilitation, a specialized form of care usually available only to the affluent or the tenacious. My job is to assess a person's needs, explore their available resources, and create a means for them to obtain the resource. The biggest obstacle I face is that there are usually no resources and no means available. Sometimes the only choice I have left is to pick a fight. A proper, legal, diplomatic fight, but a fight nevertheless.
After an initial contact-usually a phone call-I accumulate medical records and I review the case for validity. If a person doesn't have a documented brain injury, then the first step is to get it documented, usually through the help of lab reports and a neuropsychologist. Once the extent of the injury is measured, I review the records in detail, trying to enter the person's life as intimately as possible. Through further conversations with their family members or social worker, the rent images of the injured person collect and intensify in my mind. Within the course of days, I become an involved companion, though the survivor may not even know I exist. Once I feel familiar enough with the case, I start in with the phone calls to facility directors, admission coordinators, doctors, state officials, and attorneys.
The phone calls turn into e-mails, the e-mails into faxes, the faxes into plane tickets and gas pumps. The cycle from initial call to in-person evaluation can take two years or two hours, and still the evaluation is only a preliminary step. It occurs, mainly, to reconcile the survivor with their paperwork. I see for myself whether the person seeks help or has succumbed to hopelessness. I find out if their guardian or caretaker wants them better, or just wants them gone. Most important, I am there to listen. Much of what I am told in confidence never appears in a medical chart.
Over the years, I've found myself moving in the background of certain stories that challenge the very assumptions we make about being human. By going deeper into the aftermath of brain injury, we eventually reach an earnest sense of awe about the brain and its mysteries. The survivor's life emerges as an ongoing pull between the changes that occur within an altered brain and the outward repercussions that follow. It is this tension between being and becoming that begs the intimate, soulful questions posed by every brain injury. What are we other than our brains? Is there a part of me that can't be changed by a brain injury?
My boss, a veteran of the brain injury rehabilitation industry, warned me that most of the people I meet won't be able to find help. Even though it is one of the few brain injury rehabs within hundreds of miles, Brookhaven Hospital has only nineteen rehab beds. Waiting lists are the standard in every brain injury program. If I can't get a patient into Brookhaven, I'm determined to get them somewhere. Somewhere, in my experience, is better than the nowhere they inhabit.
Because of the bureaucratic tangles and the inconsistency of insurance companies, my schedule is a peculiar mix of the arbitrary and urgent. I know that six months from now I will probably be in Dubuque, Iowa, but I don't know if tomorrow morning I will have breakfast at home or next to a truck driver in San Antonio. My schedule is urgent because brain injuries are a matter of life and death. On occasion, the worst happens, and the patient dies before we ever have a chance to meet. Cases close silently, and new ones arrive in their place.
Excerpted from Head Cases by Michael Paul Mason Copyright © 2008 by Michael Paul Mason. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
MICHAEL MASON (born 1971) is a brain injury case manager based in Tulsa, Oklahoma.
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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!