Floyd Skloot, a novelist, a poet, and an essayist, acquired a brain injury from a virus; he now contends with serious physical, cognitive, and emotional deficits. Yet, he found a way to continue writing and has won prestigious awards for his work.

In the Shadow of Memory

By Floyd Skloot

University of Nebraska Press, 2003

ISBN: 978-0-8032-9322-9

A virus targeting his brain left Floyd Skloot “geezered” overnight. Like many people living with a brain injury, Skloot has memory and attention deficits that severely limit his ability to recall a novel idea, construct a logical argument, craft an elegant sentence, locate the perfect word, and stay focused on his work. His book, In the Shadow of Memory, is a thoughtful, critical, educational, and honest account of how the author came to accept his injury and create habits that allow him to continue writing at the highest level. Skloot should be an inspiration to other brain injury survivors who are intent on coming to terms with their disabilities and finding new ways to compensate for them.

Unlike many books written by brain injury survivors, In the Shadow of Memory goes far beyond the writer’s brain injury. Skloot places his injury within the context of not only his lifestyle, his career, and his relationships, but also his childhood. We learn how the physical and emotional abuse the author endured as a youth may have transformed the neurological makeup of his brain and left him vulnerable to the virus that struck him years later, reshaping his life. Skloot’s account of this connection is troubling, fascinating, and enlightening for anyone interested in brain injury.

Skloot neatly ties together the major events of his life—his brain injury being just one of many—with stories of how he gradually adapted to his brain injury. This adjustment was eased considerably by the love and devotion of his wife Beverly who appears to have mastered the difficult task of knowing when and how to offer assistance without impinging on the author’s independence. Everyone living with a brain injury should be so fortunate to have such an understanding and compassionate partner.

My newest recommendation, Professor Cromer Learns to Read, easily meets these demanding criteria. Janet M. Cromer has written an informative, enlightening, evocative, candid, and easy-to-read account of her life after her husband’s anoxic brain injury.

Professor Cromer Learns to Read

A Couple’s New Life after Brain Injury

By Janet M. Cromer

AuthorHouse, 2010

ISBN: 978-1-4490-6420-4

The author is a psychiatric nurse, a psychotherapist, an educator, and a freelance healthcare writer. She uses all of her professional skills to tell how she and her husband, Alan, a university physics professor, created a rewarding—but still challenging—new life following his brain injury, acquired when he suffered a massive heart attack.

For an academic, losing a significant portion of your cognitive abilities can be devastating. Cromer, by applying a wide array of clever compensatory strategies, helped Alan rediscover and pursue his love of learning and teaching. This gave him the self-respect and satisfaction with life that many survivors of a serious brain injury lose forever.

A brain injury also can discombobulate a marriage founded upon mutual responsibility and respect. Through trial and error and some creative thinking, Cromer and her husband discovered a new—but still challenging—way to be a contented couple. The Cromers also had to learn to manage Alan’s fits of rage and delusion through medication and behavioral approaches.

Some of the universal themes that Cromer also addresses in this excellent book are the strengths and weaknesses of our health care system, the importance of family participation in rehabilitation, the need to continue cognitive rehab at home when the health insurer says no more, sexuality after a brain injury, and the ambiguous loss and depression all caregivers experience.

Professor Cromer Learns to Read satisfies the caregivers’ need for validation and camaraderie as they live every day in the all-too-often misunderstood world of brain injury. It also provides survivors some insights into the challenges faced by their families.

My only complaint, and it’s a minor one, is that Cromer often—and necessarily—devotes many pages to Alan’s other medical problems: his heart disease, Parkinson’s, and dementia. Given my rigidly focused interest in brain injury, I found myself impatiently skipping over these passages.

The rehabilitation of people who have survived a brain injury is one area that deserves to receive more money, not less. The value of rehab following a brain injury cannot be overstated. Maddeningly, nearly all survivors fail to receive the rehab they need to reach their maximum recovery potential. Because of this short-sighted stinginess, all of society pays in two ways: (1) the high cost of caring for a survivor who would be more independent if a few more dollars were spent on her rehab, and (2) the loss of the potential productivity of a fully rehabilitated brain injury survivor.

Confronting Traumatic Brain Injury: Devastation, Hope, and Healing

By William J. Winslade

Yale University Press, 1998

ISBN: 978-0300079425

William J. Winslade is a professor of philosophy and medicine at the University of Texas Medical Branch at Galveston. For Winslade, brain injury rehabilitation is a personal, as well as a medical issue. At the age of two, he fell from a second-story porch and landed headfirst on the concrete paving below.

In Confronting Traumatic Brain Injury, Winslade makes a convincing argument for significantly increasing the amount of rehab allowed for brain injury survivors. First, he describes the different ways the brain can be injured. Next, he addresses the Golden Hour, those critical sixty minutes following a major injury in which the availability of expert medical treatment can mean the difference between life and death. Winslade then explains how advances in medicine and trauma care have resulted in far greater numbers of people surviving brain injuries.

But then the healthcare system fails. Winslade describes how most brain injury survivors receive inadequate treatment for their cognitive and emotional impairments. The burden of care and further rehabilitation falls on the family. The burden of financially supporting the disabled survivor ultimately falls on society.

As an economically-more-efficient alternative, Winslade suggests that the best way to generate the income needed to pay for the care brain injury survivors morally deserve is “to tax those activities that are the biggest contributors to brain trauma.” He includes in these activities: driving, especially for those under the age of twenty-five; drinking alcoholic beverages; shooting guns; and attending boxing matches.

Published in 1998, Confronting Traumatic Brain Injury is somewhat out-dated. But, brain injury survivors are still underserved by the medical community, and this book, unfortunately, is still relevant.

When I first started reading about brain injury—in 1997, soon after my wife Jessica acquired her severe TBI—there were relatively few choices found on bookstore shelves. Now, there are too many choices. The ease of self-publishing is certainly one of the factors behind this explosion in literary ambition, particularly that of survivors of a brain injury and those who care for them. Other factors include more brain injuries, more people surviving their brain injuries, and more attention paid to brain injuries, thanks to the wars in Iraq and Afghanistan. (And now, there’s the shooting of Representative Gabrielle Giffords.)

But, I think there’s more going on here. A brain injury is truly unique among medical conditions. A survivor can be changed in so many ways: physically, cognitively, emotionally, behaviorally, and socially. But these changes—so apparent to the survivor and those who live with her—often go unrecognized or are misunderstood by others. This causes frustration among survivors and their caregivers, who discover that writing can be a healthy outlet for this frustration, as well as a way to educate the uninformed.

Unfortunately, many of these books—while written with enthusiasm, determination, and pride—fail to meet their objectives. The intention of this blog is to highlight those books, among the many available, that are worthy of attention, time, and money.

Over the past two months, I’ve collected more than 25 books to review. To those writers who have sent me their work, I apologize for my laziness. I promise to attack my reading pile with diligence and to read every word you’ve written.

It’s cold, gloomy, and rainy outside, a perfect day to curl up with a good book.

One healthy way to address these negative emotions is through journaling. As described by Barbara Stahura and Susan B. Schuster in their book After Brain Injury: Telling Your Story, journaling is a way to “explore all aspects of your life and the emotions connected to them.” Journaling, they write, can lead to “physical, emotional, mental, and spiritual healing, change, and growth.”

After Brain Injury: Telling Your Story, A Journaling Workbook

By Barbara Stahura & Susan B. Schuster

Lash & Associates Publishing/Training Inc., 2009

ISBN: 978-1-931-11752-4

In this book, Stahura and Schuster clearly explain how both survivors of a brain injury and their caregivers can use journaling to better understand themselves and to propel their recovery to new heights.

Journaling appears to be a simple task. Sit down with a pencil and paper or with a keyboard and let the words flow, without interruption, without censor, without stopping, and without the fear of what others may think. The insights you can gain from this self-examination, however, are far from simple. This stream of consciousness form of writing can reveal invaluable insights that will allow you to better understand yourself and to guide you toward a more rewarding life.

To get you started, Stahura and Schuster provide a comprehensive, well-constructed set of prompts that guide you through the processes of understanding your brain injury, coping with the significant loss and changes you’ve experienced, exploring your relationships with family and friends, overcoming the anger and grief that may be holding you back, examining your efforts to reenter the community, and living the rest of your life with a brain injury.

Following the authors’ instructions and prompts, I spent a few hours journaling and was surprised and pleased with the results. It can be scary to allow yourself to let your emotions overflow onto paper. But, as the authors explain, keeping these emotions trapped inside is unhealthy. Releasing them can be a tremendous relief.

Finally, I often am asked by survivors how they can begin to tell their story. Usually, I refer them to a few of my favorite survivor memoirs. Now, I’ll also refer them to After Brain Injury: Telling Your Story. I also will encourage anyone who is struggling to cope with their brain injury to get a copy of this valuable resource and start writing.

Today, I begin reviewing books intended for a readership that goes beyond those directly affected by brain injury. These books fall into the genre of popular science and are aimed at people who are curious about the brain and how it works. My objective is to sift through this growing pile of books and identify those that, I believe, will benefit survivors of a brain injury and those who care for them.

The Brain that Changes Itself:

Stories of Personal Triumph from the Frontiers of Brain Science

By Norman Doidge M.D.

Viking, 2007

ISBN: 978-0-670-03830-5

Until recently, doctors and scientists believed that the brain was genetically hardwired, that nerve cells within the brain when damaged by disease or trauma were irreplaceable. Dr. Doidge, however, demonstrates convincingly that the brain is capable of being reshaped or reformed throughout its lifetime. In The Brain that Changes Itself, Doidge shows that when one part of the brain fails, other parts can fill the gap. When brain cells die, at times, they can be replaced. This is revolutionary medical news, especially for people impacted by a brain injury.

We know that survivors of a serious brain injury make great strides when they participate in formal rehabilitation in the first weeks and months following their brain injury. We also know that they generally continue to progress when they return home, reenter the community, and challenge themselves to return to their previous lives. But, it has been generally believed that this progress plateaus at about one or two years post-injury.

In the past decade, however, we have begun to hear the term neuroplasticity, the medical term for the brain’s ability to reconfigure itself. In The Brain that Changes Itself, Norman Doidge presents some compelling case studies that contribute to the growing body of literature supporting neuroplasticity.

Dr. Doidge tells how people suffering from stroke, cerebral palsy, depression, and obsessive-compulsive behavior have reorganized their brains and dramatically improved the quality of their lives. As an example of the power of neuroplasticity, Doidge describes how Christopher Reeve, who suffered a severe spinal injury, recovered some feeling and mobility seven years after his accident

Reconfiguring the brain, however, is not easy. It requires the diligent repetition of specifically targeted exercises over long periods of time. The challenge now is to design practical and effective brain injury rehabilitation programs that take full advantage of neuroplasticity, yet still fit into our overly managed, often miserly, healthcare system.

If you have a brain injury, reading The Brain that Changes Itself may provide the hope and motivation you need to continue working on your recovery.

A brain injury to any member of a family profoundly impacts how the household operates. Changes in family members’ roles and the emotional stress suffered by all can—if not understood early and addressed effectively—tear a family apart. With Missing Pieces, journalist Marilyn Colter has performed a valuable service for all survivors and caregivers by shepherding us through the emotional land mines that must be identified and defused for the family to remain healthy.

Missing Pieces:

Mending the Head Injury Family

By Marilyn Colter

Available at

www.braininjuryfamily.net

Marilyn Colter’s husband suffered a brain injury during a life-saving operation for an aneurysm. Missing Pieces is the story of how Colter, her 12-year-old daughter, and her 14-year-old son struggled to cope with this sudden change to their family dynamics.

She tells their story in an unusual but instructive way. Rather than organizing the book chronologically around the events that occurred, Colter organizes it around the emotional problems that can harm a family living with a brain injury: fear, anxiety, anger, grief, guilt, and depression.

Informed by her own experiences, Colter provides the human touch and empathy that only a full-time caregiver can understand:

• She wonders whether to follow the advice of friends to dissolve her marriage and not burden herself and her children with dad’s brain injury.
• She admits that, sometimes, she thinks her husband has lost the very things that made her fall in love with him.
• She bristles when people say her husband is back to the way he was before his injury.
• She fumes when people tell her this crisis will bring her family closer and make them stronger.

Caring for a person with a brain injury is physically and emotionally exhausting. Encouragingly, Colter reports, “Many families have been able to work out solutions to the embarrassing or frightening situations they find themselves dealing with just by admitting their concerns to each other and working together to bring change.”

Perhaps Colter’s best advice is to take a day—periodically—to do something for yourself, not your survivor.

If you or a family member is suffering from emotional difficulties and can’t afford a therapist—or you’d rather take a shot at healing on your own—this book is a good place to start.

Better yet, everyone in the family should read and discuss this book before problems get out of hand.

In my previous post, I mentioned that the appendices of Head Injury: The Facts include overviews of brain injury written for younger children (ages 7-10) and young people (ages 11-15).  An even better option for educating children about brain injury is today’s book, The Journey toward Recovery: Youth with Brain Injury by Joan Esherick.

The Journey toward Recovery is one of at least 15 books in the Youth with Special Needs series by Mason Crest Publishers. As the publisher writes, “This series provides a unique forum for demystifying a wide variety of childhood medical and developmental disabilities. Written to captivate an adolescent audience, the books bring to life the challenges and triumphs experienced by children with common chronic conditions.” With The Journey toward Recovery, the publisher and the author live up to these ambitious claims.

The Journey toward Recovery:

Youth with Brain Injury

By Joan Esherick

Mason Crest Publishers, 2004

ISBN: 978-1-59-084734-3

Jerome is a cocky star high school football player, who crashes his mountain bike into a tree trunk. His brain injury is labeled mild, but he’s challenged by a wide variety of physical, cognitive, emotional, and behavioral issues. Many of these problems pass, but others may be permanent. The Journey toward Recovery describes in simple, straight-forward language the medical aspects of brain injury and the likely consequences. Both children and adults new to brain injury will benefit from this book.

Readers learn the basics of brain injury. They also follow how one successful survivor begins to cope with the significant challenges that even a mild brain injury can cause. The chapter titles show the progression that many successful survivors follow: gone, confusion, frustration and bitterness, one day at a time, therapy, running into reality, hard work and determination, and hidden gifts.

The Journey toward Recovery warns readers to avoid attitudes and language that can not only exasperate survivors, but also delay their recovery and reintegration into the community: denying or minimizing the impact of the injury, coddling or avoiding the person. This book also describes the stages of recovery from a brain injury and offers ways for readers to help their sibling or friend succeed in their rehabilitation, homecoming, and return to school.

One of heartaches of brain injury, especially with children, is loneliness. Their friends are unable to understand and cope with the ways their pal has been changed by his injury. Gradually (or quickly), they disappear from his life. In The Journey toward Recovery, Jerome and the reader learn that true friends look beyond their pal’s disability and benefit, in numerous ways, from maintaining the relationship.

Also, when I’m not reading about brain injury, my nose is usually in a book about American history. Over the years, I’ve become a huge fan of Oxford University Press. You might expect their books to be written in an academic style, laden with technical terms. They aren’t. The books published by OUP uniformly are full of interesting and useful information, and written in an engaging manner, accessible to most readers. Head Injury: The Facts is no exception. If you’re looking for a good overview of brain injury, read this book.

Head Injury: The Facts

A Guide for Families and Caregivers

By Audrey Daisley, Rachel Tams, and Udo Kischka

Oxford University Press, 2009

ISBN: 978-0-19-921822-6

If you’re like me, one family guide is not enough. Head Injury: The Facts is a second family guide well worth your time and money. This book is packed with useful information and complements Mindstorms nicely. I suggest that you read both books.

The three authors are affiliated with the Oxford Centre for Enablement, which provides specialist neurological rehabilitation services for patients with long-term conditions. Throughout Head Injury: The Facts, they offer useful strategies to address the multiple challenges that come with a brain injury. The key points are highlighted. The frequently asked questions are answered. And, the common myths about brain injury are debunked.

Chapter 2 is an easy-to-read, informative tutorial on how the brain works and how it is damaged. In Chapter 3, the reader is walked through the stages of treatment and recovery, including the acute phase, inpatient rehabilitation, and specialist placements for specific, intractable problems. This chapter also describes what happens after the hospital. Some patients with mild to moderate injuries go home, perhaps, with a plan for outpatient rehabilitation. Patients with moderate to severe injuries typically move to inpatient rehabilitation.

The next five chapters of Head Injury: The Facts cover the different types of impairments caused by a brain injury and how they are treated. These include changes in physical functioning, thinking, speech, language, communication, emotion, behavior, and sexual functioning.

Chapters 9 and 10 address issues that commonly arise within families learning to cope with a brain injury. Chapter 11 covers some of the longer term issues of living with a brain injury, including returning to work, leisure activities, driving, finances, and legal matters.

The Appendices also are valuable. The first recommends resources and further reading. The second provides an overview of brain injury written for younger children, aged 7-10. The third appendix does the same for young people, aged 11-15.

Much of the information in Head Injury: The Facts is not included in Mindstorms. So, don’t be put off by the unfamiliar spellings or the use of the term “head injury.” Get a copy of this book, read it carefully, and you’ll be well prepared to care for your brain injury survivor.



Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury

By John W. Cassidy, M.D. with Karla Dougherty

Da Capo Press, 2009

ISBN: 978-0-7382-1247-0

Dr. Cassidy, the author of Mindstorms, is a neuropsychiatrist intimately acquainted with brain injury from his medical practice. Karla Dougherty, according to her LinkedIn profile, has written 45 books and specializes in “translating complicated medical subjects and journal articles into language laypersons can understand.” No doubt, she did much of the heavy lifting for both books.

If you’re new to brain injury, Mindstorms should be the first book you read. It’s a comprehensive, easy-to-read tutorial on the basics of brain injury. In just over 200 pages, Mindstorms covers the continuum of recovering from a brain injury: the emergency room, acute care, postacute rehabilitation, and reentering the real world.

Mindstorms describes the many types of physical, cognitive, emotional, behavioral, and social impairments that can result from a brain injury. It also describes the treatments commonly used by medical professionals to treat brain injury, especially medication, cognitive therapy, and behavioral therapy. Mindstorms also has an important chapter that reminds family members to take care of themselves as well as their brain injury survivor.

Mindstorms is clearly written. Vignettes of real-life patients treated by Dr. Cassidy illustrate and humanize the topics addressed. At times, the reader is challenged by medical discussions and terminology, but the less ambitious can skip this material.

Perhaps most importantly, Mindstorms paints a realistic picture of the permanent, life-altering aspects of brain injury. But it also offers the hope that comes from knowing that countless survivors of a brain injury live full, happy, and productive lives despite their disabilities.