Brain Injury Rewiring for Loved Ones
A Lifeline to New Connections
Carolyn E. Dolen, MA
Foreword by Nathan D. Zasler, MD
Idyll Arbor – Smashwords Edition
Idyll Arbor, Inc.
39129 264th Ave SE
Enumclaw, WA 98022
(360) 825-7797
Idyll Arbor, Inc. Editor: Thomas M. Blaschko
Back cover photograph: Don Anderson
Copyright 2010, Carolyn E. Dolen. All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transcribed, in any form or by any means — electronic, mechanical, photocopying, recording, or otherwise — without the prior written permission of the publisher.
To the best of our knowledge, the information and recommendations of this book reflect currently accepted practice. Nevertheless, they cannot be considered absolute and universal. Recommendations for a particular person must be considered in light of the person’s needs and condition. The author and publisher disclaim responsibility for any adverse effects resulting directly or indirectly from the suggested therapy practices, from any undetected errors, or from the reader’s misunderstanding of the text.
License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be resold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person you share it with. If you are reading this book and did not purchase it, or it was not purchased for your use only, then you should return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author and publisher.
ISBN 9781611580037
To all loved ones
That you see the sun
As well as the clouds.
That others share your journey
And lighten your load.
That you find what you seek.
And that by helping your survivor
You help yourself
To angels everywhere
Thank you for demonstrating that
“No act of kindness,
however small,
is ever wasted.”
(Aesop)
Contents
Spiritual Rewiring: Healing Hearts with Prayer and the Arts
Cognitive Rewiring: Healing Minds with Actitives and Games
Emotional Rewiring: Healing His Feelings and Spirits
Body-Mind Rewiring: Healing with Conventional Medicine
Mind, Body, Spirit Rewiring: Healing with Complementary Therapy
Nutritional Rewiring: Healing with Healthy Eating and Lifestyle
Physical Rewiring: Healing His Body with Exercise
Social Rewiring: Healing Spirits with People Connections
Vocational Rewiring: Healing with Productive Activity
Foreword
Brain injury can often be a major, life-changing event, not only for the person with the injury but also for family members and significant others. Clearly, at times, brain injury can be catastrophic, even to the point of ending life, either literally or at least as the person and their family knew it. Ultimately, recovering from such an injury can be a journey in and of itself. A journey that can often hold disappointment, as well as surprises, anxiety, frustration, anger and, yes, even joy. A journey that often is marked by doubt, questioning, and uncertainty.
Often times, families grapple with changes that they see in their injured loved one. They may look the same, but the “old person” may never actually be back… sometimes a very difficult thing to accept. The injured person may have died in a figurative sense, yet there was never a funeral or any other formal acknowledgement that the injured person is not the same. Families often need to get to know and love the “new” person… even if they are very different (and yet the same).
There are frequently questions of what should be done to optimize recovery or what types of activities should be avoided and, unfortunately and all too frequently, no good place to get the answers to these important questions.
Brain injury advice often is challenging due to the fact that no two brain injuries are alike, as well as the phenomena of brain injury being a spectrum disorder, that is, it can be mild to severe to everything in between. Mild TBI may impact function adversely on multiple levels including negatively effecting concentration, attention, executive skills such as prioritization abilities and organizational skills, producing affective or emotional lability and irritability, causing sleep difficulties, and producing symptoms of fatigue, headache, and dizziness, to name just a few. Moderate to severe TBI can produce prominent cognitive, behavioral, language, and physical impairments that dramatically impact the life of the affected person and also the lives of all who care for that person.
A family that has to deal with a loved one who is brain injured needs as much assistance as they can get their hands on. Having an understanding of how brain injury may change an individual’s ability to function at home, in the workplace, and in community is critical to being able to deal with the alterations in function that may be observed following an acquired brain injury. Additionally, being educated as to what one can do to help the injured person adapt to their impairments, improve their functional independence, and “recover” is key to feeling empowered and effectuating change in both their life and that of their loved one.
In providing knowledge to family members, one not only empowers these individuals but also decreases the anxieties associated with the unknown and facilitates a more optimistic outlook on the future by explaining how family members can aid the recovery process of an injured loved one. Knowledge is power and I believe that such power also imbues a resiliency to the common stressors of dealing with significant disability in a loved one, including minimizing the chances of burnout.
All too often, in this age of modern medicine and “managed care,” clinicians are disinclined to take the time to adequately educate families about the recovery process and what they can do to both optimize and contribute to it. The pressures of modern day medical practice, and professional practice in general, often limit the amount of time that family members of survivors get for education and training about what is truly required to not only understand the level of their loved one’s brain injury but also become prepared to help them adequately deal with it in the context of their ongoing recovery and rehabilitation whether in the hospital or community.
Brain Injury Rewiring for Loved Ones: A Lifeline to New Connections by Carolyn Dolen is one part of a two-part series to assist persons with brain injury as well as their families in the recovery journey and should serve as an important resource regardless of the severity of the brain injury incurred. Ms. Dolen’s book for loved ones parallels the book for survivors in terms of general content and approach. Brain Injury Rewiring for Loved Ones provides family members a comprehensive overview of brain injury, recovery, post-injury adaptation, and “life rehabilitation,” in a way that is educational, readable, and relevant. Readers will find the admixture of science and practical recommendations refreshing.
The book begins nicely with a foundation relative to Ms. Dolen’s brain injury experience and her perspectives garnered over the years of her recovery and adaptation. She then explores basic issues about brain anatomy, injury, recovery, and treatment that should be welcomed by all facing such issues given its scope and lay clarity. Ms. Dolen then carefully dissects various aspects of what is truly the multidimensionality of recovery, acceptance, and life success over the ensuing eight chapters and covers diverse topics such as spirituality, cognition, emotions, body-mind interactions, nutrition, physical aspects of injury and recovery, socializations issues, and return to work challenges.
The insertion of quotes throughout the text also adds to the multidimensionality of the information provided and will be refreshing for readers who may otherwise become overly focused on the serious matters at hand. The section on “resources,” is wonderful and provides a unique and comprehensive listing of a diverse number of valuable organizations, resources, and websites that can serve as additional sources of information for families and significant others. Lastly, the references are listed in a very user-friendly manner by being divided by chapter and listed alphabetically by first author.
Ms. Dolen’s journey and lessons learned as reflected in Brain Injury Rewiring for Loved Ones provides a unique perspective on one person’s recovery after brain injury and, in that context, provides hope to others of their own ability to both understand and assist an injured loved one to recover control of their life following acquired brain injury. I know readers will find Ms. Dolen’s Brain Injury Rewiring for Loved Ones an important educational and coping resource. If there ever was a “lifeline” for families after brain injury this is it.
Nathan D. Zasler, MD, FAAPM&R, FACRM, FAADEP, DAAPM, CBIST
CEO & Medical Director, Tree of Life Services, Inc.
CEO & Medical Director, Concussion Care Centre of Virginia, Ltd.
Consultant in Neurorehabilitation, NorthEast Center for Special Care
Acknowledgements
To rewire body, mind, and spirit after a brain injury requires lots of helpers (as described in Chapter Two). Here I will endeavor to thank all of the many angels whom God sent to me. More than thirty years have elapsed since I started this journey, and someone may be inadvertently omitted, despite God’s efforts to awaken me at 5 am with names on the brain! Please forgive me if I miss one of you. You all really did help, and survivors sometimes don’t remember everything, as most of you undoubtedly already know.
This list starts with my best friend since 1976, Marlys Henke, who offered her hearth, as well as her heart, mind, and pocketbook many times during the course of our cross-country friendship. It all began with a chance encounter on our first day of teachers’ meetings at Highland Park Junior High in St. Paul, Minnesota. I asked her to join several of us at lunch. Funny how it’s all worked out. She invited me to her Methodist Church home, affiliated with United Ministries in Higher Education (UMHE), located on the University of Minnesota campus. This church connection also enriched our friendship. Indeed, God works in mysterious ways.
Another angel was my childhood friend, Louise Lentz, who nourished me and visited me, even in locked wards and other undesirable places, just because I needed her. Friends from Johnson High School, like Mike Kluznik, and St. Olaf College alum Ann Jorstad stuck with me through many travails and helped me to remember that I was still lovable and fun. So did Pat Marshall, a dear friend since the 1980s from my San Diego days.
“Body and spirit” professionals who were especially helpful fit into the “Friends” category because the best ones acted as professionals who were friends. My willpower alone would not have gotten me up the rehab mountain. I needed the loving persistence — and wisdom — of these special people, who believed, respected, and cared.
The first of these is DJ (Dale Johnson, PhD of El Paso, Texas), who unfortunately is not physically alive to see my current status on the mountain, but I know that he knows where I am. Without DJ, I’d probably still be kicking holes in desks, punching holes in walls, screaming, crying, and cutting and burning my arm — or in some state mental hospital, homeless, or dead. Until his death in 1991, DJ visited, called, and wrote to ensure my psyche stayed on course.
Significant professionals in the 1980s include Liana Beckett, an MFCC intern at the UCSD Gifford Clinic, who continued to help me sort out the puzzle, and Mary-Alice Isenhart, PhD, who taught me that it is okay to be a strong woman. My 1990s team starts with Christine Baser, PhD, who lovingly empowered me to make significant changes in a short amount of time. Dr. Baser referred me to Daniel Gardner, MD, who treated me with respect, which enabled me to trust a male psychiatrist, even with a nineteen-year history of failure, with both MDs and drugs. Another Dr. Baser referral, Kent Bennington, PhD, used Eye Movement Desensitization and Reprocessing (EMDR), to end my irrational fears relative to the trauma of a post-injury sexual assault in 1976 and the various associated fears from the auto accident that necessitated this long climb.
Nathan Zasler, MD, most assuredly belongs on this list, not only for his brain injury treatment guidance, suggesting the Brain Tuner that replaced Prozac, but also the faithful mentoring that began in January, 1995. Dr Z (as I call him) provided the first review of Brain Injury Rewiring, a critique that led to my first contract. Survivors everywhere thank you, Dr. Zasler, for igniting Brain Injury Rewiring!
While I’ve needed less care since 1999, angels who helped heal wounds included Margaret November, MD, who noticed my occasional twitching, heretofore unrecognized, and prescribed Neurontin, which I can also use if/when I feel depressed or anxious. (The grey and cold winters still plague me.) Then in 2008 when I experienced PTSD from two rear-end collisions in a year, I sought an EMDR practitioner because it worked so well previously. Fortunately, I found my current on-call angel, Kay Emerick, PhD, with whom I immediately connected. She, like the other best helpers, maintained eye contact, took few notes, and seemed to actually like me — even expressing it! Other current loving members of my health care team include acupuncturist Mike Long, chiropractor Robert Cocain, DC, and Gulnar Poorsattar, MD. I feel very blessed!
To heal my spirit, I looked to the church, which lightened my load on many occasions. Early on, in 1976-78, it was Bill Mate, minister at UMHE, who patiently provided weekly counseling when no other services could or would handle my morass of problems. As part of the University outreach program, Bill, a noted writer, led a weekly group on writing exercises that ventured into safe areas and provided a wonderful escape route for me.
Following Bill in 1978 was a minister in El Paso, Texas. She and her family took me in after the YWCA called with a desperate plea for housing for a woman with a disabled vehicle, who was far from home — and without funds. This kind family offered a sanctuary for me for several weeks, and the Catholic Church accepted me in worship, even without nice clothes. Another early angel was the tow truck driver in Van Horn, Texas, who invited me to stay with him and his other three roommates (without disturbing me!) because I had no money and no place to go after the engine of my MG blew up in the Van Horn Mountains on my way from Minnesota to California in 1980. Thank you, too, for towing my MG to El Paso out of the goodness of your heart.
During my El Paso stay, a call from a friend brought me to New York City, where I reveled in the pomp and ceremony of St. Patrick’s Cathedral. The ritual of the mass calmed my brain and the warmth and light of the votive candles brought me closer to the higher power who could help me. Thank you to the people who paid for the many candles I lit each week.
In the winter of 1980 I finally made it to San Diego (my initial destination when I set out from St. Paul, Minnesota, that cold winter day in 1978). My newly repaired MG brought me to Mission Beach. At St. Brigid’s Catholic Church in nearby Pacific Beach, Father Lloyd and Father Richard welcomed me and introduced me to other young adults in a wonderful folk singing group. One of those members, Vanessa Puniak, remains a friend today. I remember that once Father Richard even dug unto his pockets for a $100 bill to pay for my car insurance. There, too, I met Beth Le Friant, who allowed me to camp out on her living room floor for a while. Then Northminster Presbyterian briefly became my church home; Bobbie McKee is still a friend today from that connection.
After I moved north to Encinitas, I was led to Christ Presbyterian Church of Rancho La Costa where I was first warmly welcomed by Interim Pastor Steve Jenks and Associate Pastor Ed Reynolds, PhD, and then later by Pastor Doug Kelly. I loved singing in the choir under the loving and forgiving leadership of Bergitta Brice and teaching Sunday school. It was so much fun to teach kids again! I still fondly remember Courtney and April Allen; the Artz girls: Erin, Kylie, and Aubrey; Laura and Megan Jones; Teddy Minner; and Allison and Martha Wright, who all ably assisted my teaching and didn’t mind my non-adult behavior. There I was blessed with loving kindnesses especially by Dixie Jacobson and the Banes, Billings, Hayens, McCarters, Petersons, Wings; and dear, sweet MaryAnn Christ, who befriended me through all sorts of trials, took me to dinner, briefly housed me, walked with me on the beach, and listened and loved me. Another member, computer genius Reese Brown, volunteered to format and print the very first edition of Brain Injury Rewiring — all 86-pages! Thank you and bless you all!
Then the Episcopal Church — and more healing music — called me, first to St. Andrew’s in Encinitas, then to St. Michael’s in Carlsbad, and finally to St. Paul’s Episcopal in Ventura and my beloved and supportive priest, Father Jerry Kahler. There was a brief interim stop at First Presbyterian in Santa Barbara, when I lived in my office (thank you to the lessee who kindly allowed me to sublet and sleep on the floor, while ignoring security reports!). Speaking of sleeping, without the Ventura Housing Authority and the Section 8 Program, I’d be homeless.
For brain rewiring, I first turned to school, starting with a study skills class and a reading improvement class way back in 1976. Building on my strengths is what the most notable professors did in my many ventures into the academic world. When my confidence allowed it, I began another graduate school program in counseling in the fall of 1977 at nearby University of Wisconsin at River Falls (UWRF). There I interacted with more wonderful, loving people.
One of my first post-injury professors, Dr. Vanetta Ogland, taught a psychology class entitled “Exceptional Children.” After our first test, when I reported that I had over-studied, she responded, “All good students do.” This was the very first time since the accident that I recall anyone ever telling me that I was good at anything. So I worked my tail off, loved her class, and even earned an A! She was the first one to call my writing “haunting,” after she read one of my pieces about “The Boy from Avreyon,” the story of the boy who lived in the wild and then was “saved” by some townspeople. (She noted my line “and he never smiled again.”).
Also significant at UWRF was Bill Romoser, PhD, statistics professor, whose love for aphorisms kept me going (“It’s tough to fly with eagles when you work for turkeys,” and “Don’t let the bastards get you down.” (He said this in Latin to be PC, but I don’t remember it.) Another was Counselor John Hamann, PhD, who took on the challenge of working with my psyche. John used my intellect and stubbornness to advantage, challenging me to overcome the demons. Without enough weapons, I couldn’t yet, but his assistant, Joann introduced me to the desensitization techniques that would be very useful in many areas throughout my journey.
There were also special professors at Cal State Dominguez Hills, where I earned my first MA in Special Education in 1986. My adviser, Karl Skindrud, PhD, kindly helped me finish the program in ten months, while teaching full-time, even though when I told him my plan at our initial meeting, he said, “No one has ever done that.” (I probably said, “Watch me,” or something equally diplomatic.) Intellectual stimulation and emotional support in that program was provided by Judith Jackson, PhD, the language professor who actually made studying speech interesting.
After returning to San Diego and briefly teaching, I studied at San Diego State University from 1988-91. Special professors in the Physical Education Department (now known as Exercise Science) included Pete Aufsesser, PhD; Peggy Lasko-McCarthy, PhD; Tom McKenzie, PhD; and department chair, Rob Carlson, PhD. Another Midwest refugee, Pat Patterson, PhD, who played the role of active guardian angel during my coursework, thesis work, and extensions, voluntarily chaired my thesis committee and worked with me weekly for nine months to restore my writing skills, develop a researcher’s questioning mind, and befriend me generally. Uncannily, Pat could act knowledgeably, yet defer to me as the brain injury expert and allow me to develop the topic.
During my thirty-plus-year journey, I could always rely on physical activity to produce joy. And, while I’ve lifted weights in many different gyms across the country, my favorite indoor “fitness home” is the Ventura Family YMCA. The excitement that results from a wide diversity of ages is so refreshing. Not only am I thankful for the scholarship that allows me to be a member, but also for the accepting and happy feeling that permeates the facility. I don’t mind that I’m often the only female in the free weight room either! Yoga Jones is my other indoor haven from stress.
Finally, I am very grateful to my brilliant and accommodating friends who supported my efforts and edited one or many chapters, starting again with Marlys Henke. Thank you, too, to my talented photographer, Don Anderson (with three PhDs!) and his able assistants, Joan Anderson and Susan Abrams, who are members of St. Paul’s in Ventura. Actually, my entire church family, especially Kay Armstrong and the Leahys, deserve a huge thank you for supporting Brain Injury Rewiring and me for the past nine years! Many editors are church friends, including: Ralph Armstrong, MD, Bill Knutson, Dev Leahy (DevL), Larry Meyers, MD, and Jennie Whaley. Valuable help in dissecting dozens of research studies was provided by Diane Rennell, PhD, whom I met while ushering in Ventura. Thanks also to Mark Ylvisaker, PhD, who communicated with me for years despite battling melanoma; Rob Rich, DC, and John Dupler, PhD, for their chapter contributions; and early editors, Christine Baser, PhD, and Dan Gardner, MD, who labored over long chapters. For igniting the Brain Injury Rewiring spark, I’m indebted to the San Diego Brain Injury Foundation (SDBIF) for funding my initial thesis research and its former president Ron Ruff, PhD, for supporting it. Lastly, Brain Injury Rewiring would not even exist as a “New Connection” if not for the courage of Tom Blaschko of Idyll Arbor who persevered with me for five years from contract to final product. No doubt there were a few (or many) times he wondered about his own sanity during this adventure!
Throughout this thirty-plus-year journey, many other angels entered my life and offered their hearts, minds, backs, and, a few, even their pocketbooks, to lessen my load and lift me to the ledges beyond my reach. Brain Injury Rewiring is my thanks to you generous souls for your small and large acts of kindness. Know that others will reach the top because you first helped me. Bless you one and all!
Introduction
Life is a one-way street. No matter how many detours you take, none of them leads back. And once you know and accept that, life becomes much simpler. Because then you know you must do the best you can with what you have and what you are and what you have become.
— Isabel Moore
This Brain Injury Rewiring for Loved Ones: A Lifeline to New Connections is my gift of a helping hand to you as you join the work party in your survivor’s challenge of a lifetime — his climb up the rehabilitation mountain.
In this Lifeline, you will learn the why, what and how of rewiring the brain and optimizing all systems — from the perspective of a long-term survivor. You will understand what to do and what to say — and not say — to him. You will read how to heal yourself and your family, too, as you all make new connections.
Expect people to be better than they are; it helps them to become better. But don’t be disappointed when they are not; it helps them to keep trying. — Merry Browne
I will show you how I grappled with — and overcame — the challenges by refusing to embrace the concept of can’t. I’ll show you how he can do this too, with your help! You will also see what research says about this most perplexing of injuries and the latest treatment methods to heal it.
This guidebook is half of a two-part set; your survivor will want his own Lifeline that empowers him to help himself and you. Transform your lives with the complete set: Brain Injury Rewiring for Survivors and Brain Injury Rewiring for Loved Ones!
Chapter 1:
Recollections of the Day
In the middle of the journey of our life, I came to myself in a dark wood where the straight path was lost.
— Dante
Old Highway 12, Inver Grove Heights, Minnesota
January 10, 1976, 11:37 AM
It happened on a snowy, blowy, winter day in Minnesota over three decades ago. As my mind flashed back to the ski lesson and ahead to seeing Hank, the friendly flurries of the morning gradually changed to gusts, and then to whiteout, obscuring the lane lines on Old Highway 12.
Soon the surface itself became almost invisible and I couldn’t see if there even was a road! Every cell of my being focused on navigating my cherry-red MG Midget out of the turmoil of the storm and into the haven of my garage, just a few miles away.
Then, as snow blanketed the pavement and left me blizzard-blind, it happened — crash! My brain cannot remember and my soul cannot forget the collision. This is the conversation I had with myself that day:
“Boy, do I love to ski! It reminds me of cycling. Skis glide without effort, as I fly down hills, wind in my face, free — free to be. Actually, it’s just great to be outside, exercising. I feel so alive, whole, happy — just being outdoors.
It’s so unlike working at the hobby shop. What a bore! Hmmm, maybe I should call personnel on Monday and try teaching again; it sure wouldn’t be boring. I’m just on extended sick leave, anyway.
Boy! Do I ever miss my old teaching job! I probably wouldn’t have ulcers if I were still there. Darn it! What a great staff! We all really cared about one another, unlike that last place. What a switch! Still, despite no adult friends there, I liked most of the kids and even though the teaching wasn’t as fun, the coaching, as always, was worth it. And working with the kids usually took my mind off the divorce.
God! I never thought divorce would be so awful, so lonely, so sad. But I just didn’t like where our marriage was going and he refused to go to therapy with me. I suppose he thought he’d be outnumbered, me in a graduate program in counseling and all. I’m so sorry he didn’t want to save it, not to mention shocked. I’ll really miss his mother. God, I love her. I hope we can still be friends.
Well, my mother was right about John. I hate it when she’s right! Sure am glad to have Hank in my life, but when is he going to be free? I guess I should be happy just to share what time we have. Can’t wait to see him! All I have to do is watch for my exit. I’m almost there.
Okay, you’re close. All you have to do is stay on the road. Find the exit. Are you in the right lane? Oops, better be sure. Go slowly, stay on the road.”
That’s all I remember. Now I am a survivor: someone who lived through an accident that caused a brain injury.
The Pre-Injury Person: Similarities Survivors Share
Many survivors and family members will recognize my chaotic life was similar to their own experiences. Although many of us would prefer to “idealize the deceased” — a psychological term for describing the pre-injury person as nearly perfect — research suggests that many survivors’ lives immediately before the injury were lives of turbulence, disorder, and overwhelming risk-taking behavior.
That survivors share many similarities is well known: Those under age 30 incur 70% of all injuries, with males two to three times more likely to be involved than females. Survivors are four times more likely to be divorced and are unemployed more often than not. Significantly, nearly 75% of us survived a transport-related accident. Finally, the most significant contributing factor to all accidents is the use of alcohol, although not in my case — it was still morning!
On the spiritual side, if we survivors are honest about our pre-injury lives, there was no apparent life or focus of energy for many of us. The story you are about to read may not fit all survivors. It simply illustrates one kind of chaos — yours may have been different. We all came from different places, worked at different jobs, and may or may not have been in a loving relationship. But one thing we all share: we are now brain-injured, and our lives will never again be the same.
Revealing some of this history may tarnish my girl-next-door image for both old and new friends, but it’s the truth — as far as I can remember. Facing that truth is vital for survivors to move past what was, to focus on what is, and what can be.
My Muddled Career and Emotional Life
Pre-injury, my life was a mess! Career, emotional, physical, and spiritual aspects were all in disarray, marked by questionable decisions that were likely influenced by alcohol and mostly prescription drugs — and maybe just a little “herb.”
The structure that arises from a stable home and job life began to unravel, starting with a minor accident that resulted in a whiplash injury, for which I received cortisone injections and Valium prescriptions.
Then came the separation from my “until death do us part” husband of five years — a defining crack in my ’50s and ’60s fairy tale world that advertised: “Get a degree and follow that with an optional career. But be sure to marry, and make a home, and then live happily every after.” Couples were supposed to agree on everything, and the fairy tale never told us what to do if incompatibility developed as people grew. After all, did Ozzie and Harriet ever fight?
In addition to the injury and the flaw in the marriage fairy tale, the fatal flaw ultimately proved to be in my workaday fairy tale: my teaching career at a beloved school was over. Reduced enrollment at the junior high where I taught, coached, counseled, and chaired the social committee forced an involuntary transfer.
In two months I lost both the security of a relatively stable home life and a very fulfilling work environment where I was loved, valued, and allowed to grow. This was followed by a bewildering summer filled with long walks and talks with friends that focused on the shock of a failed marriage. Graduate school, poetry workshops, and new friends from those endeavors helped ease the pain, but the summer’s culminating move to a tiny apartment seemed to symbolize all that I lost. My new place lacked personality, pool, tennis courts — and my marriage partner. It visibly represented the emptiness that I felt.
The flaw in the fairy tale widened that fall and grew to a chasm when I realized that none of the features of my former beloved school — young, strong, close staff; programs that worked; energy; community support — were present in the new school. Perhaps more importantly, I was not a vital part of it. There was no reason to esteem newcomer me or seek my input. Still reeling from — and barely surviving — the losses, I was unable to find my role in this entrenched system, dashing my hope of a fresh career start.
At this school I met Hank, who pretended to be single, but wasn’t, which I learned after I fell in love with him. The typical empty promise to get a divorce “…as soon as…” further disrupted the fairy tale.
Hospitalization for an ulcer attack interrupted this confusing scene, first on a medical floor — then on the psychiatric wing! After a bewildering month, I was released and found a special position at an experimental school offering strong people and energy, but not the structure and belonging I so desperately needed.
After vagabonding between the homes of parents and various friends, I moved back to the same apartment building of my married life, and began the next year at yet another school I didn’t like, which had even fewer of the qualities I valued.
Then another hospitalization. This time it was straight to the psychiatric ward — for depression and ulcers again. As part of my treatment plan, doctors recommended I take an extended sick leave from my now very unfulfilling teaching career and work part-time in sales at a nearby hobby shop. This sounded appropriate for two reasons: I was born to sell and the sales job would be less stressful. But it lacked vitality, even at Christmas, and I missed teaching, missed the kids — and missed the feeling of doing something worthwhile.
During this tumultuous year and a half, my support network — parents, family, friends — were still dealing with the fact I was no longer part of a couple — my parents reacted with anger and my friends and family with avoidance. After they initially comforted me, I lost my close circle of loved ones. Most old friends were temporarily out of touch at this time — everyone struggled with their own issues.
My only spiritual life was that found at the end of a bong or in a bottle of Scotch, in bed, or behind the wheel of my cherished red MG Midget. I vaguely remember a bit — maybe a lot — of sexual acting-out. Physically, I was not able to consistently exercise. Still suffering with whiplash from two minor accidents — before the MG — I took Valium at will and often washed it down with an alcoholic beverage while out socializing. Besides this self-medication, I randomly took other drugs that doctors prescribed for depression. Did I mention a certain fondness for marijuana in a wine-filled bong?
The pre-injury portrait you’ve just read paints a life in turmoil, to be sure. Career and marriage lost, our girl-next-door was struggling — and losing. Although my memory is somewhat cloudy, it’s likely that I simply do not recall other disturbing events, probably in an unconscious attempt to maintain some semblance of dignity — I ask your understanding for that. But even with no other contributing factors, you get the picture. It is not surprising that I was an accident waiting to happen. I do vividly remember the following scene at the hospital — terror does that.
After the Injury, Ramsey Medical Center St. Paul, Minnesota
January 10, 1976, 6:11 PM
Where am I? Why is everything dark? Hank and I were supposed to meet at noon. What are my parents doing here, standing over by that window? My mother looks worried. She’s wearing that frown and my father looks distressed — I guess. I’ve never seen that look on his face before. It’s sort of mad and sad at the same time.
Oh, God! What’s the matter with me? Why can’t I move? Why am I strapped down? Why does my head hurt? Why does everything hurt? Why can’t I talk? Am I dead? Where am I? Why am I in this gown, in this bed, in this strange, dark room? Why are my parents looking at me like that?
I want to say, “Hi!” and smile, so my mother will stop frowning — but I can’t, so I moan. They look at me and Mom says, “Honey, you’re in the hospital and you had a bad car accident, but the doctor says you’ll be fine.”
Oh God, No! Not my MG — my precious MG — not my MG!
That’s all I remember. That — and the absolute terror of not being able to speak.
End of Day 1
Beginning of the climb — the endless climb — the climb that demands your all — the climb that either kills you or makes you strong.
Chapter 2:
Climbing the Mountain
This time it’s make or break. All senses concentrate. He knows that’s what it takes. For a victory. Only the strongest survive. No room for compromise. He races with the time. And his own mortality. Some people don’t know how to give in. You knock ’em down. They just pick themselves up again. And all they got is. Willpower. To make a dream come true. Don’t underestimate willpower. It can move a mountain or two…
— G. Lyle, T. Britten
The crash forever changed my concentration — from navigating my beloved MG to navigating myself through the windy, tortuous switchbacks that meander up the mountain of life. I describe my more than 30-year ascent in the following story, where an avalanche substitutes for the car crash.
Today, my climb up the mountain continues, on the surface not all that different from others navigating through the ordinary switchbacks of their lives. But after an avalanche interrupted my previous expedition, careening me onto a rocky ledge, several things do distinguish me from my fellow travelers. Now my brain needs direct commands and half of my body wants to rest while the other half works. And although I look fine, neither my repaired equipment nor my old clothes seem to fit. Funny how no one else notices.
Other members of my hiking party move faster than I. They question my slow pace; I look like I’m in shape for this journey, except for a few cuts and bruises.
It’s at times like these that I wish for a defining scar of some sort, a visible sign of my limits, like a big “HI” for “head-injured” prominently displayed on my forehead. Then maybe people would give me a break. And I could give myself a break. But they’d probably see it as a greeting and say, “Hi!” — or ask for an explanation that could lead me to an outburst, which would just make everything worse. As it is, I look fine.
No one gives me credit for surviving the near-fatal avalanche, rehabilitating myself, and setting out on yet another climb. What does happen, however, is that other hikers frequently nag me to move faster and tell me to lighten my load if I can’t make it. They offer suggestions that begin with “Why don’t you just …” and say, “You don’t look disabled to me.” Funny how no one asks me if I have a problem.
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. Now the only visible direction is down, the crooked hat masks my tears, and I struggle even more. Funny how no one sees this.
Some fellow climbers doubt my efforts and challenge my courage. “What’s the matter, why can’t you keep up? My pack is bigger than yours. You said you were a tough athlete.” This is followed by more “Why don’t you just …” suggestions with variations on the “Try a little harder!” theme. Oh, I wish I had that scar and didn’t look so fine. But still, it’s funny how no one tries to understand.
The other hikers offer many suggestions except for the one that would help — offering to carry part of my load. Perhaps because each pack has been custom-designed, no one wants to take part of my pack’s weight, create an imbalance, and jeopardize his own success. Funny about that.
Everyone tells me how much easier it would be if I had been able to save my original equipment. No kidding. This is followed by marveling at how lucky I was to survive with so little damage and how good I look. Sporting a very large scar increases in appeal by the minute. Then maybe they’d commend me for my efforts — perhaps even ask how to help me.
As it is, as they continue their climbs, they laugh at the repaired gear that hasn’t adjusted to my new shape. I force a smile to avoid the extra burden of an outburst, try to hold back my tears, and talk to God and to myself.
“Remember, ‘Act as if’ — as if you’re not weak, not inadequate, as if you can do it.” I stumble on, but without laughing. It’s not funny.
Maybe they forget that I, too, loved my original form-fitting pack. I need to remember that they mean well, and that at least we’re still on the journey together. After all, they haven’t asked me to leave their group — yet. I hope they remember that I’m doing the best I can. Funny how no one offers to change places with me. And I don’t even have a scar. “It could be worse. I could be falling or stuck at the bottom or alone.”
Suddenly, there’s a shelf and a hand reaches down to help pull me up. The sun and the other hikers warmly greet me. My tears are over, for now, replaced by a smile and a thank-you. The next ledge is in view and the mountaintop — shrouded by clouds since the beginning of the climb — actually looks reachable. Funny about that.
My Three Helping Hands
Most survivors likely will empathize with this story — and also understand that everyone carries a loaded backpack. Hopefully, most loved ones and professionals will help to carry part of our load. Indeed, what we all really need to climb the mountain is a helping hand.
To explain why I now mostly peer down at the vista below me instead of being mired in the muck at the bottom or marooned on an obscure ledge on the mountainside, I can think of three reasons:
God, church, and my religious family — my spiritual life.
Willpower, hard work, and achievable goals — my values, beliefs, and attitudes.
Friends and family — my support system.
All of these are interdependent, e.g., many friends are from my religious family — and none of them could carry the extra load alone. Even with God on my side, if there were no God’s helpers or no Minnesota work ethic, my journey would likely have ended long ago. For any significant, lasting progress to occur I still need them all.
A good example of all my helpers working together followed my running a 5K race, attended by members of my adopted San Diego family. A 20-foot high rock-climbing wall attracted the teenager in our family. Because there would be over an hour’s wait, I agreed to stand in the long line with him. As we stood there, I noticed that most of the other climbers were between 10 and 40 years younger than I. Two women only a decade or so younger cajoled me into climbing, too. They even requested that I climb first since I had run the race and looked to be in shape.
My anxiety increased as we neared the wall. Questions peppered my mind: “Where are they placing their limbs to successfully climb? What doesn’t work? How did that kid race up the wall so fast? Why doesn’t anyone here look remotely close to my age? Why am I so anxious — don’t I always say I love to try new things — am I becoming conservative? What would be the worst thing that could happen?”
The teenager was next and quickly scampered to the top. It was my turn. “OK, use the holds that the others did. Good! Hands and feet are in place. Oops, now what?” After one more move, my face nearly touched the wall, every muscle in my body was tense, I was stretched to the limit — and I was stuck.
Seeing the panicked look on my face, family members loudly cheered. As this power surged through me, I scanned the wall for places to move to. Then — luckily — the staff person advised me where to place my left foot. “Way over there?” I said to myself. It seemed too far to stretch, but I didn’t have another alternative, so attempted the reach — and happily found myself stretching farther than I ever imagined I could!
The rest of the climb was easy, and I reached the top to ring the bell and cheer loudly. “Wow! After that one obstacle, it was easy to succeed!” Thanks to all the helpers, I made it — my first wall-climbing experience was a success!
This rock-climbing wall is a metaphor for survivors climbing the recovery mountain: if we stretch farther than we think we can, we can achieve; if we prepare, we can succeed; if at first we don’t succeed, try, try again. Sometimes we may need to just have faith that help is there, even if we cannot see it. The obstacle needn’t defeat us just because it looks impassable. We need all of our helpers to work at the same time in order to succeed.
The distance doesn’t matter; only the first step is difficult.— Mme. du Deffand
My teenage friend and I moved on to the more advanced wall with confidence. There we were able to place our hands in holds that we could not see after the helpers assured us those were the ones we needed. We believed them because they had been correct earlier and there appeared to be no other holds that would work anyway. In fact, all the crevices seemed to shrink as we reached them! Thanks to all working together, we climbed up this wall faster than the first and easier one, clanged the bell, and cheered.
Can survivors use my experience on their mountain climbs? Will others see my success and gain enough courage to either start their climbs or continue their journeys with more resolve and confidence? That’s my hope.
December 1978 — and the rest of my life
I’ll never forget my prognosis after I was injured in 1976: “suicide or psych ward.” I remember being both surprised and shocked by what they said. Here I was, a schoolteacher, someone who believed in the power of education to change lives, and they wrote me off! Not only did I wonder what those %?$*&#! were on, but it motivated me to prove them wrong! And it still does — this is why I am writing this book!
Just because I seemed to favor both the excitement of driving an MG and occasionally the security of the psychiatric hospital didn’t necessarily make me suicidal and schizophrenic! I simply needed to find my purpose and focus again — to start over — following a period of living on the edge, walking with the devil, and feeling adrift.
After my world blew up, I needed to replace it — with something better! My two years of trauma — including failed suicide attempts — only reaffirmed my belief that, as my childhood friend Louise said, “You’re here for a reason, Carolyn.” My mission was to find that purpose before my capabilities were lessened any more.
To prepare for any mission, an inventory needs to be taken: What do I have? What do I need? Where am I going? What do I seek?
Before I could “go with God,” I needed to see my way through a dilemma: if God doesn’t make junk, why do I feel like it? A typical God response — unpredictable and provocative — arrived at a freeway exit stoplight:
“Child, you were chosen, not discarded. And I chose you because you are strong. Many others are not as strong as you, so you need to help them to carry their load — and I will help you to carry yours. Remember, Jesus already took the big rap. You don’t need to carry all of it, too. I’m not asking you to do that. What I am asking is for you to be the best you that you can be. And, when you feel down, remember how tough you are. It is because you are tough that I ask a bit more of you. I will not ask you to do more than you are able. Just call on me when you feel weak and, together, we will prevail. Just remember to call on me.”
I paused. My thinking did a 180° turn — from feeling discarded to feeling chosen. So, that’s why all the hell — to prove to myself how strong I was. Then, my first positive self-talk in a long time: “You must be pretty damn tough to withstand all that you have faced. And, you have prevailed!”
After this awakening, I could proceed to answer my mission questions: What do we have? What do we need? Where are we going? Why? What if?
First, what I had: cold Minnesota, with snow, ice, scary roads, and six weeks — maybe — of summer complete with the “State Bird” — the mosquito; Mom and Dad — but they’re gone all the time, especially in the winter; Aunt Chelsie, Marlys, Louise, and Mary Ellen; bad memories of accident, rape, and school lay-off; vocational/academic failure, and the cabin.
Second, what I needed: something better. With warm weather, ocean, and freedom from snow and cold and scary roads. A fresh start. A graduate school for social work.
Third, where am I going? Either California or Hawaii is warm and provides both the ocean and appropriate graduate schools.
Fourth, why? What if? I can and I must. It is suicide to stay. I need to be free of the snow, the bad memories. If I don’t like it, I can always return. Go now before the worst of the snow and cold. This is reminder enough that I must go or I’ll die here, unfulfilled.
So, one cold, snowy, winter day in December of 1978, I left Minnesota. One warm, sunny, winter day in December of 1980, I arrived in the Mission Beach community of San Diego, California. A snowdrift in southern Minnesota waylaid me, and the same Rocky Mountain blizzards that blocked the shortest route led me to my wonderful El Paso shrink DJ. It was a two-year journey — a lifetime of experiences that can be revisited at will.
It wasn’t easy or fast. But it did happen and it’s still happening. I remember my first race of any kind in twenty years: I cycled thirty miles in just over an hour and a half (1:34) to place second to an All-American triathlete in my over-50 age group in a bicycle road race! My new built-up cycling shoes with special inserts actually provided me with two good legs. The result was a shock — no pain and no flats — and I had not trained! Imagine what will happen when I do! When’s the next race?!
My recovery over these past thirty-plus years has, in some ways, been nothing short of a miracle — if the many brushes with death and further injury encountered on this journey are considered. In writing this book, even I am amazed at the outcome after all my adventures!
My Invitation to You
Come with me now as we all climb this mountain together. Let’s explore how to help mend our survivor’s equipment and even help him make his peace with it from time to time. Let’s help treat his wounds and reduce his stumbles. Let’s help him reach the top — or at least higher than anyone thought he could. Let’s also lighten the loads of our fellow travelers — we know what a difference that can make. Eventually, when he begins to hike more and stumble less, and after he reaches a ledge or two, we’ll all breathe easier. Maybe all of us will even enjoy the rest of the climb!
Don’t underestimate willpower. It can move a mountain or two. — G. Lyle, T. Britten
Chapter
3: Brain Construction and Wiring
It is the wounded oyster that mends its shell with pearl.
— Ralph Waldo Emerson
After your survivor’s injury, you probably ask questions like these: “How are our brains constructed and wired?” “What happens when a healthy brain is damaged?” “How are injuries diagnosed and treated?” “What behaviors usually result?” “How do brains recover?” “What does my loved one need to do to rewire?” “How can we help?”
Keep asking! This chapter summarizes what experts tell us about the brain and its wiring, the effects of brain injury, and recovery and rewiring in general:
Brain 101: Structure and wiring. Basic information about brain structure, function, and wiring of the communication system.
Brain 102: Injuries, damage, and effects. Information about the different kinds of injuries and sites.
Brain 103: Treatments and tests. Various diagnostic instruments and procedures that might be used in his evaluation and care.
Brain 104: General recovery/rewiring questions — if, when, how, and why. How the brain recovers, what behaviors you can expect, and what you can do to help.
Introduction
Brain injured or not, everything in our environment impacts us, either positively or negatively, to a greater or lesser degree. People, places, or things — prescription medications, street drugs, alcohol, food, exercise, or any physical, mental, emotional, or spiritual interaction — can either enhance or diminish us.
Your survivor’s brain chemistry is especially sensitive. Help him be kind to himself. Help him to refrain from polluting himself internally and to avoid polluting himself externally with toxic people, places, and things. To help you understand the inner workings of the brain and how to help him, let’s begin with the mental part — rewiring.
Brain 101: Structure and Wiring
What is the structure of the brain?
The three main sections of the brain are
The cerebrum, “the seat of consciousness,” the center for higher mental faculties, such as thinking and feeling, and all voluntary muscular activities.
The cerebellum, located at the base of the skull, responsible for coordination of voluntary muscular movements.
The brain stem, located deep in the brain, connects the left and right sides of the cerebrum with the spinal cord, responsible for basic functions of consciousness and life maintenance, such as breathing and heart rate.
What are the parts of the cerebrum and what activities do they control?
Divided into an outer layer called the cerebral cortex and an inner layer called the subcortex, the cerebrum can also be divided into right and left sides called cerebral hemispheres.
The outer layer cerebral cortex as a whole controls our perceptions and actions, our spoken and written language, and our abilities to think, reason, plan, and act.
The inner layer subcortex includes the limbic system, which regulates emotional experience and expression; the thalamus, which is an important sensory relay station; and the hypothalamus, which regulates such basic functions as sleep, sex drive, hunger, thirst, and emotional response. The hypothalamus also controls the pituitary gland, the body’s master gland that regulates the endocrine hormone system.
Divided by a deep, lengthwise fissure, or crevice, the cerebral hemispheres command specific responsibilities. The left hemisphere controls the right side of the body and guides language processing plus analytic and verbal thinking. The right hemisphere directs the left side of the body and oversees spatial and whole-concept thinking plus creative and musical activities.
How are the hemispheres connected? How are their duties divided?
A thick layer of crosswise nerve fibers called the corpus callosum interconnects the hemispheres so that almost every part of one hemisphere links with the corresponding part of the other.
Each hemisphere is divided into four sections called lobes. The largest is the frontal lobe, at about one-third of the total brain volume. The other lobes are the parietal, temporal, and occipital.
Located on the front part of the brain, right behind the forehead, the frontal lobes organize behavior. The functions controlled by the frontal lobes include emotional regulation and reaction, attention, judgment, and motor control. Executive function is a term often used to describe frontal-lobe abilities, describing the duties of our “brain-boss” which directs the complicated activities required by a thinking human being. This administrator is responsible for putting into effect complex, goal-directed activities — like preparing a meal — that require detailed planning to achieve a purpose.
The parietal lobes are located near the sides and top of the head. Their functions include interpretation of bodily sensations, visual/spatial perception, perception of position in space (proprioception) and numerical reasoning needed to do arithmetic.
The temporal lobes are located on the side of the head above the ears, by the temples. Their functions include hearing — auditory processing of sounds, language, and music, memory, and emotional expression.
The occipital lobes are found at the back of the head by the occipital bone. Their functions include visual scanning and processing, reading, and facial recognition. A large amount of the brain relative to the other senses is devoted to processing vision.
To summarize: the back portions are more involved with receiving input; the front portions are more involved with sending output, and the central portions are where input is translated into output. From outside in, the brain is organized from integrated, complex, general conscious activities in the cortex, to more automatic, reflexive, and individualized activities in the subcortex and medulla.
Even though the brain is divided into hemispheres and lobes, it functions as a whole and is more complex than an advanced computer! All of its component parts are wired to interact with one another continuously to produce our complex activities. Unlike a computer, the human brain is constantly changing. It does not need to be externally updated or replaced by a better version. The various programs don’t need to be turned on separately — the human brain is always on!
What does the brain look like?
The brain is a soft mass of interconnecting tracts that looks like unset gray pudding (grey matter) surrounding white yogurt (white matter). The gray matter contains numerous neuronal cell bodies and synapses. The white matter is composed of many fiber pathways.
Together, the brain and spinal cord weigh about three pounds. The entire mass of the brain can fit in the palm of an average-sized adult’s hand. Neither brain size nor head size indicate how “smart” the brain is. Only the depth and number of neuronal connections can determine intelligence!
What kinds of cells are located there in the brain?
The brain is composed of two principal types of brain cells, neurons and glia. An average brain starts out with about 100 billion neurons, which are the most complicated and among the largest cells in the body with some parts that may stretch as long as a yard.