Brain Injury Rewiring

A Lifeline to New Connections

Carolyn Dolen

The Books

Brain Injury Rewiring for Survivors
Carolyn Dolen
B604
$19.00
Trade Paper, 324 pages
Published by Idyll Arbor
Publication date: 2010
ISBN: 9781882883707

Brain Injury Rewiring for Survivors discusses medical care and then goes beyond that to show the survivor ways to heal spiritually, emotionally, cognitively, physically, socially, and vocationally through traditional and complementary medicine and good nutrition. (read more)
Brain Injury Rewiring for Loved Ones
Carolyn Dolen
B603
$19.00
Trade Paper, 324 pages
Published by Idyll Arbor
Publication date: 2010
ISBN: 9781882883707

Brain Injury Rewiring for Loved Ones provides extensive information about what happens in the brain when it is injured, and goes on to describe the medical care required during the initial stages of recovery. After that, the book makes it clear how loved ones can help the survivor heal in all the categories described in Brain Injury Rewiring for Survivors. (read more)

The Authors

Following her brain injury from a 1976 auto accident in a Minnesota snowstorm, Carolyn Dolen received the prognosis, "suicide or psych ward." Befitting her feisty personality, she defied that prediction and within twenty years of her trauma earned two master's degrees with high honors, cycled from San Francisco to Santa Barbara in four days and San Diego to Cabo San Lucas in 13 days, and learned to board and kayak surf. Now she defies the concept of "aging" by competing in triathlons and seeking new adventures.

Carolyn's climb up the recovery mountain required rehabilitation in virtually all areas of life, including mental, emotional, physical, vocational, and social domains. (As current friends can attest, she's still working on this last area.) Her Brain Injury Rewiring books describe the path others can follow to recover from brain injury.

Besides spreading the word about Brain Injury Rewiring, Carolyn works to improve her surfing and triathlon skills. She qualified for the 2009 Team USA in the sprint triathlon and plans to place even higher in 2010. To balance body, mind, and spirit, Carolyn bicycles, runs, swims, weight-trains, practices yoga, competes in various races, sings, and volunteers at numerous athletic and performing arts events.

She doesn't "do" idleness!

Book Reviews

From Brain Injury, August 2011; 25(9): 918-920
Brain Injury Rewiring for Love Ones: A Lifeline to New Connections, written by Carolyn Dolen, is one of a two-part book series addressing the topic of brain injury recovery. This book serves as a guideline for the families and loved ones of an individual who has sustained brain injury. The guide offers detailed information regarding the nature of brain injury and the ongoing recovery process. Ms Dolen is a brain injury survivor and details her own recovery over 30 years. She describes the necessary process of 'rewiring' the injured brain and how family members and loved ones can assist the survivor spiritually, emotionally, cognitively, physically, socially and vocationally.

Ms Dolen begins the book by detailing her own brain injury and pre-injury life. She uses the metaphor of a mountain climb to describe her recovery. For the most part this metaphor is clear and simple to follow. However, there were some instances in which the metaphor seemed choppy or incomplete. For example, she wrote, 'Exasperated at my halting steps, one of the leaders places an extra sun visor on my head, convinced that the bright sun is slowing my progress. But the hat slips down my sweaty forehead, covers my good eye, and I'd have to drop the lifeline to fix it' (p. 10). She continued to describe how this hindered her advance but it left me questioning what the 'extra visor' represented and how this related to the metaphoric 'lifeline'. Fortunately, this moment of uncertainty was brief and, overall, the mountain climb was an effective metaphor. She goes on to attribute the eventual success of her long and arduous climb to her 'three helping hands; spiritual life, personal values, beliefs, and attitudes, and her support system' (p. II).

The author provides detailed information on basic brain structure, aided nicely with the use of figure drawings. The information is presented in language that is approachable to the layperson. A description of various types of brain injury and subsequent effects is presented along with commonly utilized tests and treatments. Additionally, the author elaborates on the rewiring process and gives specific and useful suggestions and strategies for families in which to engage with their survivor to enhance recovery. This section is informative and written in practical and helpful terms to guide the family. Through this resource the author seeks to better enable family members to act as educated advocates in the care of their loved one.

The remainder of the book focuses on the rewiring process following brain injury. Ms Dolen suggests that rewiring is necessary in multiple domains. I found the chapter on spiritual rewiring to be particularly interesting, as it was well written and focused on recovery through the venue of the arts and spiritual practices. The author begins by discussing the healing power of music and discusses the process of 'charting your heart' (p. 50) as a way of discovering which music and sounds result in the most therapeutic environment for the survivor and family. The relationship between music and its affect on body and brain function is described. The author goes on to advocate the use of prayer and spiritual practices and provides specific examples that followers of various religions might utilize. This chapter reads well even for the non-religious reader. The remainder of the chapter is devoted to encouraging survivors and their loved ones to engage in expressive and/or receptive arts to aid in the healing process. Examples range from painting, creating music, photography, creative writing and acting in the theatre.

Additionally, Ms Dolen provides an insightful view of her own psychological challenges following her injury. She accurately points out that emotional and behaviour problems can often result in the 'most significant and lasting effect of brain injury' (p. 89). She reviews the stages of grief and various dimensions of loss and also details various types of depression and other emotional issues. Importantly, the topics of substance abuse and suicide are also addressed. Specific Do's and Don'ts for family members are provided in an attempt to instill hope during the process. Finally, various treatment options are covered, with an emphasis on the importance of family rewiring.

The author addresses the topic of treatment through medication, psychotherapy, physical therapy, occupational therapy, speech therapy and neuropsychological interventions. She makes efforts to summarize empirical support, provides personal examples and gives expected outcomes for varied treatment options. Additionally, non-traditional and controversial treatment options are discussed such as eye movement desensitization and reprocessing, neurofeedback, therapeutic horseback riding, music therapy, aquatic therapy, recreational therapy and expressive arts therapy. Information is also included regarding various personal therapeutic devices such as the use of light boxes to counter depression, cranial electrical stimulation and nerve stimulation to manage pain. Clinicians would be wise to carefully review this section before recommending it to families as it does discuss a number of controversial therapeutic options, which do not currently have strong empirical support and/or are considered non-evidence-based. Despite this concern, there is an interesting discussion of the mind, body and spirit, which explores a myriad of interventions to compliment traditional medicine. The author shares the background of holistic medicine and launches into a discussion of treatment options including acupuncture, energy healing, massage therapy, homeopathy, chiropracty, relaxation therapies, aromatherapy, imagery techniques, hypnosis, meditation and magnetic therapy. To add interest and relevance, the author provides her personal experience with many of the treatments discussed.

A chapter is also devoted to the need for socialization and community re-entry. The author discusses possible social skill deficits, cognitive impairments and behavioural and emotional issues that can impact the survivor's social interactions. The reader is provided with helpful suggestions including the use of the SAFER method (Stop, Assess, Fix, Evaluate, Retry), which is advocated throughout the book. The author goes on to describe changes that may occur within the marriage, family and friendships following brain injury. Advice is offered for coping with the stress that follows and helpful strategies are provided for families and loved ones. Additionally, she ventures into the topic of dating and physical intimacy following brain injury and the use of social-cognitive techniques, including role-playing, to enhance the survivor's communication skills. The chapter concludes by discussing several programmes and strategies to improve behaviour and social skills, including a list of Do's and Don'ts for families of survivors.

Overall, I felt that Brain Injury Rewiring for Love Ones: A Lifeline to New Connections was a well organized and useful guide for families. One drawback to the book is the way in which various treatment options are presented. While the goal of providing a summary of many treatment modalities is laudable, the clinician may want to carefully review these chapters before offering it to families as a resource. The author does not necessarily differentiate evidence-based from non-evidence-based treatments and, thus, readers could potentially become confused as to the efficacy or indication for these various approaches. Additionally, some clinicians may have concerns about some of the treatment approaches presented and, thus, be hesitant about recommending the book, especially if it clashes with their preferred approach. However, families and patients are often exposed to this type of information and the book might serve as a way in which to discuss the pros and cons of various interventions.

One of the book's strengths is the way in which information is organized. At the beginning of each chapter the author presents the various topics discussed as bulleted items. Each of these topic areas are then presented in bold print throughout the chapter. Additionally, various questions that family members are likely to ask are presented and attempts are made to provide thoughtful and thorough responses. Each chapter ends with a summary of bullet point topics discussed, which makes for easy reading. At the conclusion of the book, the author reviews the key topic areas addressed that she considers 'the most important thoughts, ideas and strategies' (p. 266). This outline serves as a useful and convenient tool to quickly review each chapter. Finally, the author includes a comprehensive resource guide for families. Resources are categorized under various topic areas with a brief description. Web addresses and phone numbers are also provided. In general, the book's overall layout and organization certainly aid in its usefulness as a guide for families. After loved ones have read the book various topics and areas of further interest can later be easily located and reviewed.

To further inspire, the author has included relevant and influential quotations throughout. Additionally, Ms Dolen's experiences add interest and further assist the reader to view circumstances from the survivor's perspective. Finally, the author's personal accounts offer hope and encouragement. Overall, Ms Dolen provides valuable information including helpful tips, useful advice and strategies for loved ones involved in the survivor's recovery process. All of these elements merge to make this book an informative and potentially valuable 'lifeline' to families and loved ones of survivors. This reviewer recommends Brain Injury Rewiring for Love Ones: A Lifeline to New Connections with the above-mentioned cautions.
Jodi Cavanaugh
Brain Function Assessment Center
2700 Robert T. Longway Blvd., Suite I
Flint, MI, USA
Email: jcavanal@hurleymc.com

From Library Lournal
A 1976 auto accident in a Minnesota snowstorm left Dolen with a brain injury and a prognosis of "suicide or the psych ward." She was motivated, however, to prove the health-care team wrong. In part the story of her continuing recovery, in part a manual for survivors and loved ones, these books are readable, practical resources that parallel each other in general content and approach. Dolen explains normal brain anatomy and functions, as well as what happens when the brain is injured. Readers learn that no two patients are alike; injuries range from mild to severe and in the worst cases lead to death. Concentration, attention span, organizational skills, emotion, sleep, and behavior can be affected. Both books offer in-depth explanations of how to get the most from health-care professionals and educate readers about treatment, recovery, postinjury rehabilitation, and adaptation. Chapters focus on a specific aspect of therapy: spiritual, cognitive, emotional, nutritional, physical, social, and vocational. Included is a valuable list of resources, organizations, and web sites arranged in the same order as the chapters. A reference list for each chapter completes the content. VERDICT Survivors is a powerful testament to how courage and spirit can aid in recovery and, like Loved Ones, equips readers with knowledge and understanding to help with the many problems accompanying head injuries. Both titles are highly recommended for their intended audiences.
--Jodith Janes, Cleveland Clinic Fdn. Lib., Library Journal

From ForeWord Magazine
Carolyn Dolen is the accomplished survivor of a 1976 traumatic brain injury (TBI) and a "suicide or psych ward" prognosis. The U.S. Department of Defense has formed a taskforce on TBI, and estimates there are 2 million new cases in the U.S. annually. These two books [BRAIN INJURY REWIRING FOR SURVIVORS and BRAIN INJURY REWIRING FOR LOVED ONES] are filled with direct and practical strategies for TBI recovery, approaching rewiring from multiple aspects, including emotional, spiritual, cognitive, and physical rewiring.

Stories

Rewiring Stories

Brain Injury Survivor Qualifies for National Triathlon Team

Carolyn Dolen

How do you qualify for a national triathlon team? The same way you get to Carnegie Hall -- practice! How do you qualify if you're a brain injury survivor? More practice!

It can happen! Fulfilling a year-long dream, last July I qualified for the National Sprint Triathlon Team. Placing in the top ten competitors in my age group at the National Championship race made me eligible to compete at the 2009 World Championships. Although qualifying fifth out of ten thrilled me, I passed-up the World Championship race in 2009 to save money and improve my skills for the 2010 event, which will be held in Budapest. The qualifying race for that event will be held in Iowa on June 19, 2010.

As a brain injury survivor, how did I "practice more" to reach my goal? Using the SAFER (Stop, Assess, Fix, Evaluate, Retry) approach that my former therapist, Christine Baser, PhD, and I devised in the 1990s, I stopped and assessed all aspects of my triathlon training. While the "fix" was difficult at first, it was fueled by success.

Because I have cycled since I was four years old, that leg of triathlons was strong. However, my running and swimming both needed work.

Although I've always eaten healthfully (thanks, Mom), I realized that my strength-to-weight ratio needed to improve and that the faster women were also leaner, so I started with diet. Although difficult and totally contrary to my genetic heritage, I decided to savor only half of my usual daily dose of dark chocolate and entirely forego my other longtime favorite, mint chocolate chip ice cream, until after the National Championships. (I still enjoyed ice cream-topped pie or cake at holiday celebrations). Combining this regimen with increased running happily resulted in a loss of seven pounds over a period of a few months. Now perhaps only fifty other runners would pass me instead of a hundred!

Next up was to improve my swimming. A 2002 surfing injury and three subsequent rotator cuff surgeries left me with significant nerve damage and very weak "core" shoulder muscles. What was the swim "fix"? Return to an aggressive (what else?) physical therapy approach and join a class at the local community college. Under the tutelage of winning coach, Larry Barrate, I improved my technique and gained strength and confidence. Fortunately for me, Terri Holden, a friend from Rincon Triathlon Club who twice completed Hawaii's Ironman, also took me under her wing, befriending and coaching me when we swam together.

Increasing my running speed was the next needed "fix," so I again turned to coaching. Josh Spiker, a former national 5K and 10K champion and owner of Inside Track, was the obvious choice. Josh told me that I could become faster, despite my brain injury -- just the encouragement that I needed after 20 years of depressing running results! His drills and group workouts at a local park were challenging, but fun, and the camaraderie propelled me to run faster and feel more confident. In my own runs at my favorite beach, I increased my interval training, ran more frequently, and added a weekly long run of six to eight miles. Eureka! -- my race times improved!

One vital aspect of triathlons, motivation, didn't need fixing. As a triathlete since 1986 when I first moved to San Diego from blustery, snowy, and frigid Minnesota, I felt blessed to be able to swim, bike, and run in such fabulous weather, so a greater challenge was to talk myself into not working out!

Did my brain injury and other injuries affect me? Of course, but they certainly did not derail my determination to see how good I could be. The old Army slogan "Be all that you can be!" helped to propel me to overcome any challenge that I faced. My motto is to "go over, under, around, or through" any barrier in my way. Yes, there have been a few: since 1976. I've fought numerous infections, sustained a few more concussions, and probably broken, strained, or sprained virtually every possible body part.

Importantly, after every injury and illness, I applied the SAFER plan. For example, the last time my surfboard hit my head and kept me out of the water for two weeks, I bought a helmet. When a sinus infection returned, I reduced my training, remembering the words of my best friend, Marlys Henke, "It's better to be out two weeks than two months!"

When I wasn't able to race or surf for nearly five years after the 2002 surfing injury, I missed it so! Others who race can identify: I feel the most alive when I push myself to do my best in a competition. Certainly a key to my success and an important maxim for other brain injury survivors is to focus on personal achievement, not besting anyone else. Yes, it's exhilarating to place in the top three and "podium." The greater achievement, however, is to improve our race times and do the best we possibly could that day.

The Olympic motto "faster, stronger, higher" also applies to brain injury survivors -- and anyone else who faces a challenge. When we seek the help of others, plan how to improve, work hard, and keep on trying, we can all be the best that we can be.

In my dedication in Brain Injury Rewiring for Survivors: A Lifeline to New Connections, I exhort other survivors: "To those who say you can't, show them you can. To those who say you won't, show them you will. And to those who ask you how -- Just show them!"

Yes, we can!

Lessons on the Road to Rewiring -- the SAFER Plan

Carolyn Dolen

"I know it doesn't seem possible right now, but your life will get better," promised DJ after I'd alternately sobbed and bellowed my latest miseries in one of our twice-weekly sessions. (I called Dr. Johnson "DJ" because I didn't like doctors and I wanted to like him). "Soon you'll find that a part of each day won't be so awful. Then a bigger part, which will progress to a whole day that is mostly good. Soon there will be several days in the week that are more good than bad. Eventually, you will experience more joy than sadness in entire weeks, even!"

Eyes crinkling, DJ smiled that annoying "believe me if you dare" look I'd seen so many times. Of course, I took his dare and also believed, because I had to. Not believing was too depressing! Besides, he'd been right about many other things. (He also knew how miserable I was.) If HE said it, then it must be true, it could happen. That's what I reasoned that winter day in 1978.

"OK--tell me how that's gonna happen!" I said, probably kicking his desk or throwing something -- but never at him, my archangel DJ. And he did. And because he said it would happen, it did happen, like a self-fulfilling prophecy. Believing it gave me hope and fuel for my very tenuous hold on life.

Now, over thirty years later, I can say that he WAS right! Winters are still a bad time for me, especially when some infection invades me. But now there are only parts of some days that are bad, and surely more good days than bad in a week. Now most of my days are mostly happy.

How did this happen? After I finally found someone (DJ) who believed that yes, something DID happen to my brain, my life gradually improved. And with a rewiring journey of over thirty years, I met many other angels and learned a few lessons along the way.

Christine Baser, PhD, was one of those angels. The SAFER plan that I refer to in my Brain Injury Rewiring books evolved during therapy sessions with Dr. Baser when she assiduously observed that I repeated mistakes, unknowingly, of course. This is a trait that many survivors share because of our memory deficits.

Here's how SAFER evolved. As we prepared for a bike ride after a restful night and a peaceful breakfast at the country home of my girlfriend, Chris Green, it happened. Without warning, that awful, ear-splitting leaf blower screaming ripped into my brain! Despite the surround-sound racket, I tried to block it out (which survivors can't do) and kept readying our bikes, pumping air into the tires, and inserting filled water bottles into the cages because, darn it, my girlfriend and I were going for a ride, and this needed to be done before we could go! But I was shaking so badly that I dropped one of the bottles and then totally lost control.

Alas, too late, with brain bursting, face contorted in pain, and yelling and sobbing, I held my head, as I rolled around on the concrete driveway, attempting to "ground" myself, I guess. My friend looked bewildered, but knew I needed to escape, so she guided me into the quiet haven inside her home.

The sobs began again. Chris comforted me like a baby as I lay on the floor, still attempting to ground myself. Surprisingly, her dog Ashley offered me comfort, and I, with defenses down, just as surprisingly permitted it! Previously I'd ignored Ashley and avoided her as much as possible because I was bitten near my groin by a monstrous dog in Texas, and, frankly, was quite frightened of any dog!

After I recounted the horrible incident to Dr. Baser at our next session, she advised me: "Don't try to continue what you are doing. Go away or otherwise protect yourself from the noise. Do not try to ignore it." As I painfully learned, if I continued, the "brain pain" worsened. Over thirty years later, I still recall that "leaf blower incident" with a wince.

To avoid other bad sound experiences, Christine and I decided to develop a plan. With my love of acronyms and a need to use my remaining cognitive skills, we called our plan SAFER: Stop, Assess, Fix, Evaluate, Retry.

As one who perseveres without seeing that my actions are fruitless -- or worse -- "Stopping" was really hard for me at first. And, of course, I usually "pushed the envelope" because that is who I am.

I gradually learned when I could ignore a bothersome noise and when I could not. For example, when I ride my bike and a train or a truck with a barking dog approach, I consider whether I should "Stop." If I "Assess" that the "Fix" is to keep going because the disturbance is fleeting, I "Evaluate" how well that is working.

If the "Fix" isn't working because the train is long, I "Retry" with a new "Fix" by riding away to escape the train. I "Assess" when the noise level drops sufficiently, and then try a new "Fix" by riding in my original direction.

SAFER works differently in other situations. For example, when my friends and I enter an establishment with loud music blaring, we "Stop." The "Assessment" is that the noise is too loud and it is not momentary, so the "Fix" is to exit immediately. Then we "Evaluate" a better place to go and "Retry" entering the new place. My friends know and understand my sensitivity to noise and most of them don't like loud music, either. We simply "Retry" finding a quieter place until we are successful.

Stop, Assess, Fix, Evaluate, Retry. I hope this is a useful technique for you, too. SAFER leads to success for everyone -- not just brain injury survivors!