Brain Injury Rewiring for Survivors
A Lifeline to New Connections
Carolyn E. Dolen, MA
Foreword by Christine A. Baser, PhD
Idyll Arbor – Smashwords Edition
Idyll Arbor, Inc.
39129 264th Ave SE
Enumclaw, WA 98022
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
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ISBN 9781611580044
To all survivors
That we may be all we can be.
That our climbs be shared,
That our packs be light,
That our eyes be clear,
And that the vistas be near.
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.
Contents
Spiritual Rewiring: Healing Our Hearts with Prayer and the Arts
Cognitive Rewiring: Healing Our Minds with Activities and Games
Emotional Rewiring: Healing Our 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 Our Bodies, Ourselves
Social Rewiring: Healing Our Spirits with People Connections
Vocational Rewiring: Healing with Productive Activity
1Foreword
The brain is a mysterious and wondrous thing: three pounds of jelly-like matter that determines who we are, what we think, how we feel, and how we live in the world. Writing about the brain in an intelligent, cogent, and helpful way is even more wondrous, and that is what Carolyn Dolen has done.
Providing us with two volumes, Brain Injury Rewiring for Survivors and Brain Injury Rewiring for Loved Ones, is an accomplishment that speaks not only to Carolyn’s passion for teaching and sharing, but also her compassion for anyone who has faced life on terms they didn’t expect, ask for, or want. During my career as a neuropsychologist I have often wished for a book like Brain Injury Rewiring to provide my patients the answers they seek and the inspiration to continue their own journeys.
I remember when Carolyn began the project of Brain Injury Rewiring, and while I was amazed at her dedication, I did doubt that she could be so persistent as to compose, rewrite, and edit this volume again and again until it was done. I shouldn’t have doubted her determination for this labor of love! Persist Carolyn did, and she has now provided us not only with terrific information and resources, but insight and understanding about the trials and triumphs of traumatic brain injury recovery.
It is fitting that Brain Injury Rewiring places Spiritual Rewiring at the front end. If you are reading this, you are likely a “seeker,” someone trying to find and connect with whatever lies beyond what you already know. Starting from a spiritual place or “heart center” recognizes that being brain injured is not who a person is; it is their soul that comes closest to revealing their true self. Harmony, new horizons, and heart can be found by any who seek it.
As a neuropsychologist, I relate well to the Cognitive Rewiring chapter. There are many activities that can help retrain cognitive functioning, at any recovery stage. I have found that young survivors tend to embrace technological aids with ease, are still familiar with the learning process, and accept the role of “student” to the therapist’s “teacher.” They are not as firmly established in their habits and roles, and therefore approach cognitive rehab with less trepidation. Older survivors, more established in a role or life routine, may resist doing things differently than they did before their injury, struggling to accept that a new approach doesn’t diminish them. However, older survivors often have the benefit of life experience and prior learning that facilitate cognitive rehab. As Carolyn points out, each person will have a different blueprint of recovery. While cognitive rehabilitation may employ similar learning principles with different survivors, the specific functions focused upon and the amount of compensation versus retraining will vary from person to person.
Emotional rewiring may be the least understood of all. We know the prevalence of typical psychiatric disorders that follow a brain injury and we know that emotional distress is a predictable secondary consequence of trauma and loss. However, we are only beginning to clearly understand how various emotions influence our thoughts and our thoughts affect our emotions. Add to that a brain that sometimes processes information accurately and sometimes does not, and it makes for unpredictable behavior. Many survivors feel emotions more deeply and are easily overwhelmed by emotion, particularly in the early stages after injury. They must relearn how to regulate emotions and control behavior so they are not subject to the strong pull of feelings like a runaway train. In most cases, initial heightened emotional sensitivity smoothes out over time, and residual sentimentality can be channeled into a greater appreciation for life. As you read the Emotional Rewiring chapter, be kind to yourself, non-judgmental, for any of the emotional traumas that still exist.
With her “tell-it-like-it-is” style, Carolyn outlines all the major traditional therapies, and some increasingly popular alternative therapies, in the Body-Mind Rewiring and Mind-Body-Spirit Rewiring chapters. Since there is no one health care specialty that can provide all things to all people, Carolyn wisely emphasizes how to find and keep a good health care team. As the practice of health care evolves, it departs more and more from the days of Marcus Welby, MD or long visits with the familiar family doctor. Each survivor must learn the tools of self-advocacy in order to receive the best care. Carolyn not only provides wonderful descriptions of therapies, but also offers many tips on how to communicate your needs to health care professionals.
The most surprising thing to me about Brain Injury Rewiring for Survivors is that Carolyn kept the Nutritional Rewiring and Physical Rewiring chapters to 73 pages! Her editor must have had a hand in that. Healing nutrition has been a mainstay for Carolyn and no doubt contributes greatly to her zest for life. If you wonder why a chapter on nutrition is in a book about brain injury, then you are missing one of the primary take-home messages of this book… your whole self is involved in the healing process. If any part of you is “out of whack,” then your healing will be harder to accomplish and take longer.
You will probably detect the former physical education teacher in the Nutritional and Physical Rewiring chapters. You can just picture the food pyramid, nutritional labels, and calipers being offered to all willing students. Seriously though, we can all benefit from Carolyn’s experience and knowledge, as she truly “walks the walk” when it comes to nutrition and physical well-being. Scientific studies are showing that the benefits of exercise extend far beyond the physical body, to cognitive and emotional well-being. Most people recognize that nutrition and exercise will create a stronger and more willing body, but the positive impact upon the mind is sorely underestimated. If you haven’t already discovered this for yourself, Brain Injury Rewiring for Survivors can explain it and show you the way to becoming active and vital.
Sigmund Freud claimed that “love and work are the cornerstones of our humanness.” If you are fortunate enough to achieve a good physical, cognitive, and emotional recovery, you might believe that your healing is complete. On the contrary, optimal healing includes a good quality of life, and that means being in the world in a meaningful way. The Social Rewiring and Vocational Rewiring chapters address the biggest challenges a brain injury survivor has to face — “How will I be received and how do I pull my own weight in the world?” While gainful employment is not possible for some survivors, I have observed that all survivors want a connection with other people and want to spend time doing something socially worthwhile or personally satisfying. Although finances obviously motivate people to return to work, we see our true selves through what we do and how we spend our time. Carolyn makes it easier to navigate the confusing world of social relationships, financial support, and vocational re-entry. The acronym SAFER, used throughout this book, is applied particularly well to the topics of social and vocational rewiring.
The scientific literature has a great deal to say about the role of awareness in brain injury recovery. In the patients I have worked with over the years I have found that awareness characterizes successful survivors: awareness of themselves, their circumstances, and their options. They don’t just wait and then react. They actively size things up and figure out their place in the scheme of things. They are aware of what is or is not working for them.
Brain Injury Rewiring for Survivors is a terrific tool for increasing awareness. Carolyn has posed thoughtful and revealing questions and created a template for staying open and aware. If you read and use Brain Injury Rewiring for Survivors as the guide it was meant to be, then you will undoubtedly improve your awareness and contribute to your success.
Read. Begin. Heal.
— Christine A. Baser, PhD
Neuropsychologist
Carlsbad, California
May 2009
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, both with 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
Brain Injury Rewiring for Survivors: A Lifeline to New Connections is my gift of a helping hand to all who seek one in our climb up the recovery mountain. I offer my hand and ask that you, in turn, give yours to others, so that no one feels that no one cares.
From my experience as a survivor, I will offer you ideas about how to heal your body, mind, and spirit as you make new connections to yourself and to others so that you can successfully reenter your community and resume productive activity.
I share my journey with you — and dare you to “Just Do It!” too — go over, under, around, or through those obstacles in your path!
Brain Injury Rewiring for Survivors: A Lifeline to New Connections is half of a two-part set — Brain Injury Rewiring for Loved Ones: a Lifeline to New Connections is my gift to your loved ones. My books can help all of you learn how to make new connections as you — the survivor — rewire your brain. I prove that recovery is possible — with a spark and some hot wires! Get charged!
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 climb this mountain together. Let’s explore how to mend that equipment and even make our peace with it from time to time. Let’s treat those wounds and reduce those stumbles. Let’s reach the top — or at least higher than we thought we could. Let’s lighten the loads of our fellow travelers — we know what a difference that can make. Eventually, when we begin to hike more and stumble less, and after we reach a ledge or two, we’ll breathe easier. Maybe we’ll 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
Do what you can, with what you have, where you are.
— Theodore Roosevelt
After your injury, you probably seek answers to questions like these: “What happened when my brain was injured?” “How does it repair itself?” “Will I recover?” “What can I do to rewire it?” “How long will it take?”
Keep asking! Learning how your brain works will help your recovery! This chapter summarizes the information found in the Brain Injury Rewiring for Loved Ones “Brain Construction and Wiring” chapter. Plus there are some special questions that are here just for you.
Terminology. Discussing brain recovery requires the use of some medical vocabulary that may be unfamiliar to you. Please do not skip over these challenging words! All medical terms are italicized, defined in the text, and listed in the index.
If ye have faith as a grain of mustard seed… nothing shall be impossible to you.—Matthew 17:20
With billions of neurons (nerve cells in the brain) and astronomical numbers of interconnections between them, we all hold tremendous potential! Yes, even survivors still possess a few billion neurons ready and waiting! As a teacher, I believe that people will make good choices if they are educated. Let’s begin the understanding phase of our “brain work.”
Injuries, Damage, and Effects
Like a precious castle surrounded by a moat, our brains are well protected. Under the skull, several layers of membranes pad the brain physically. Chemically, a multi-layered barrier surrounds all brain cells. Providing the first wall of defense is the blood-brain barrier (BBB), an intricate network of cells that acts like a filtering system, allowing only selected substances to pass. To process and convey information, our neurons communicate much like a telephone system.
What happened when my brain was injured?
A chain reaction of events occurred that changed the balance of the brain chemistry. Even if the area that is damaged is small, the entire brain is affected if the BBB has been invaded or broken down.
When the BBB is violated, a flood of blood cells and other substances that are toxic to neurons fill the cellular spaces reserved for them. Just like other unexpected and unwanted floods, the fluid builds rapidly and the brain swells. This swelling is called edema.
Glial cells (non-nerve brain cells) protect neurons from the toxins and act like sponges, but they swell too and die when overloaded. No amount of sandbags can stop the flow of this flooded river. The toxic chemicals are re-released into the brain’s blood circulation system, thereby damaging or killing more neurons and glial cells because their membranes are overloaded. This allows highly electrically charged particles called free radicals to freely roam and assault brain cells. Brain stability is imperiled and chaos reigns. Every living cell reacts with shock.
The brain tries to fight back and adjust to the invasion. The injured cells do everything in their power to live, but the longer the flood continues, the more damage and functional impairment results. What was a balanced “soup” is now a dangerous soup. Where healthy cells once received proper nourishment and oxygen, the rupture of blood vessels means that the transport system no longer works, so elements critical to survival are unavailable. More cell death occurs.
How does the injury affect my communication system?
Electrical impulses sent from neuron to neuron are interrupted and signals are incomplete. Portions of the brain may no longer communicate with one another or signals may advance at a much slower speed. Disruptions can involve both processing speed and ability. In the case of a severe injury, some neurons actually die; other neurons may be active, but no longer be as efficient.
To use a computer analogy, when the interruption of activity takes the brain down, it may flash distress signals, produce strange noises and symbols, or simply stop. A single disconnected wire halts all activity and nothing anyone does can fix it until and unless the proper wire is reconnected. Then the computer may need to reprogram all its basic functions. It will not just pick up and carry on as if nothing happened. Although it may have only been bumped, incurring an injury that looked minor, the effect of the shock on the total operation was not minor — it may not even know the date and time anymore.
Tests and Treatments
From blinking lights to beeping machines, you may or may not remember much about the early hours and days in the hospital — except that everything hurt.
I vaguely remember watching the monitor screen with fascination and wondering — during my in-and-out-of-consciousness state — what it was showing. I also recall pleading for water for my parched throat and the nurse only placing a few tiny ice chips on my tongue. Now I know the purpose was to restrict my fluids to reduce brain swelling — but then I was feeling victimized by their stinginess with water.