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After Brain Injury: Telling Your Story - A Journaling Workbook

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Barbara Stahura and Susan B. Schuster, MA, CCC-SLP, Lash & Associates Publishing

After Brain Injury: Telling Your Story
Multimedia

Introduction

“ ‘What is your medicine?’ I was asked.
“‘Story. Story is my medicine,’ I answered.” 

— Deena Metzger, Entering the Ghost River

Telling Your Story

As a person with a brain injury, you have been hurt and traumatized by something most people haven’t experienced and can’t understand. Whether your brain injury is the result of an accident, surgery, military service, violence, infection, medical emergency, or any other cause, you now must deal with a number of challenges you never expected or imagined. One major challenge you face is making sense of a life disrupted and perhaps altered forever. Another is being accepted as a person who still has value and whose life still holds meaning and purpose. Yet another is revealing a new self to people, perhaps even your loved ones, who don’t realize or understand the changes the injury caused in you (changes you may not understand, either). And, since every brain injury is as unique as the person who experienced it, you will face your own individual hurdles.

However, no matter how many challenges your brain injury has created for you, one thing is certain: You have a new story to tell.

Being natural-born storytellers, we humans assign meaning to everything. So, usually without realizing it, we build our lives from the stories we tell ourselves and each other. Like weavers, we combine ordinary and significant events alike into stories that tell us who we are and where we belong in our world. When we answer the question, “What did you do at work/school/home today?” we are telling our story. When we describe our honeymoon in Hawaii or how we watched the polar bears at the nearby zoo, that’s a story. So is writing a letter that reveals our sorrow over death of a baby son or the quiet joy of a long-lasting love. When we dream of a desired future or struggle to understand our past, we are using storytelling to shape our lives. We also hold many unspoken stories in the deepest chambers of our hearts and spirits, some of which can embrace us like a lullaby or burn us like acid.

Creating a New Story

An injury to the magnificent, mysterious brain can upset the familiar story of a life in ways no other injury or illness can. You may face not only challenges with your physical abilities but, more essentially, you may find yourself wrestling with difficult mental and emotional changes. So much you knew about yourself — the wealth of information you depended upon to lead your life — can blur or disappear, leaving you stranded and struggling in an unknown place. You can feel as though you’ve been kidnapped to an alien planet where nothing is familiar, where you feel threatened and lost. You might even feel as though you have disappeared.

Fortunately, story can be your medicine, as Deena Metzger says. Creating a new story after your injury can allow a measure of healing (even years later), help rebuild your life, and offer much-needed hope. Like laying stones to form a path, you can use your own words and insights to guide you through a now unfamiliar world. By giving voice to your deepest self after the trauma of a brain injury, to whatever extent you are able, you can forge a new understanding.

Journaling to Tell Your Story

One powerful method of telling your own story is a simple writing technique called journaling. It allows you to express your innermost thoughts on the page, free of judgment from anyone else — and without any requirement to correct and revise your writing (journaling is not a test!). You can journal in only minutes a day, several times a week or a month, or you can spend more time. You can keep your writing private or later share it with others. You can write while you’re alone or as part of a group.

In a journaling group, participants often choose to read their entries aloud. In the small journaling groups the authors have led, we have found that this kind of sharing opens the door to companionship among the participants, whose brain injuries have often left them feeling isolated. They have told us how much more connected and valuable they feel after sharing their journal entries, since other survivors of brain injury can identify with the obstacles, challenges, and hard-won successes they write about. In addition, since the participants have reached various levels of recovery, the support also encourages the more recently injured members to keep up the good fight for recovering as much as they can.

However, whether you write on your own or in a group and whether you share your journal entries or keep them private, the important thing is that you give yourself permission to write them. Without that, your story will remain undiscovered.

The Importance of Story

"Humans are not ideally set up to understand logic; they are ideally set up to understand stories.”
—Roger C. Shank, cognitive scientist

 “We make our lives bigger or smaller, more expansive or more limited,according to the interpretation of life that is our story.”
— Christina Baldwin, Storycatcher: Making Sense of Our Lives Through the Power and Practice of Story

What is a Story?

This book is titled After Brain Injury: Telling Your Story. What is story? Why is it important?

Often, “story” means pieces of writing such as science fiction or fairy tales or romance novels. But in this book, it means the story of your life, all those millions of pieces, large and small, that have gathered together to become “You.” That huge, complex story begins with the basic facts of your life: for instance, where and when you were born, your gender and ethnicity, the age of your parents and their marital status at that time, whether they died young or lived into old age, the number and ages of your siblings, whether you have a religious faith, where and when you attended school, and illnesses and injuries.

On the day you were born, you began the lifelong process of collecting and creating stories about yourself and the world. Especially in the youngest years, this is mostly an unconscious process, since your young brain basically soaks up whatever happens to and around you.

Stories of your Life

Later, you understand yourself through the filter of what you unknowingly absorbed. Far more important than the “facts” or outward events and experiences of your life are the ways your mind, heart, and spirit interpret them. Your interpretations are the stories you live by.

For example, when parents divorce, young children often believe they are the cause of the split. They experience the painful fact that their parents no longer live together, and because they don’t yet understand the world of adults, they can automatically interpret the divorce as their fault. Obviously, this can create psychological and emotional havoc for them, which has the potential to affect the rest of their lives. Fortunately, caring parents can transform that interpretation by gently explaining that the child is in no way responsible.

This automatic interpreting of events does not disappear when we grow up. Say you’re driving in rush hour traffic, already feeling stressed, when a car barrels out of a parking lot directly in front of you. You jam on your brakes with inches to spare. Startled and angry, you yell (or worse) at the other driver because you interpreted his act as stupidity combined with poor driving skills. You carry your anger home, where you yell at your children for no reason they can see, which upsets them. However, what if the other driver had just received word that his daughter had been severely injured and was rushing to the hospital when he left the parking lot? That does not excuse his actions behind the wheel, but they become more understandable. If you had known that fact, you might have interpreted his actions differently and felt compassion for him.

Remember also that when people’s personal stories combine and interact, they form the field that grows the world’s stories, which can span many centuries. Just as trillions of cells gather together to create one body, many tiny stories give rise to an enormous one. And just as an individual’s story interpretations are crucial, the same is true for the world.

Imagine a grocery bag full of food. A person — or a culture — could mindlessly fill it with junk food that does nothing to nourish and may even do harm. Alternatively, the bag could be packed with nutritious, delicious foods that support health and vitality for many decades. The stories you believe — about anything — are your emotional food. If you repeatedly berate yourself with negative labels, you live one story. If you instead often remind yourself that you’re smart and worthy, that you’re fine just the way you are, you live another. If you hold a belief that prevents you from attempting a new activity, you live a different story than if you tried and succeeded, or if you tried and failed and tried again. All of these beliefs create various stories that can take your life in many directions.

The Story of Brain Injury

So it is with the story of brain injury itself. The old “official” story said that any possible recovery would occur in the first six months, or one year, or two years tops. After that time period, further recovery was believed impossible. In this version, survivors who may have made great strides with further rehabilitation and therapy were often cut off, leaving them unable to fulfill the potential they might otherwise have had.

Fortunately, science has transformed that old story. Brain researchers recently have discovered that the human brain is far more capable of recovery, and for many additional years, than was previously believed. This does not mean everyone with a brain injury will recover or continue to make progress — that depends on the actual injury and a variety of other factors—but it does offer hope of further healing and restoration of function, with improved possibilities for a better post-injury life.

Sharing Your Story

Telling your stories is a way to exchange knowledge and insights and to build a sense of community. It helps you learn to cope with new situations and to make decisions. It is also vital. You need to be able to express yourself in open and honest ways for your mental, emotional, spiritual, and even physical health. Yes, it can be devastating when a person important to you ignores the story you’re trying to tell, but when someone really listens with care and understanding, the magic of being heard can make you bloom. Sharing your stories with compassionate listeners strengthens and validates you — even if you are the only listener. Telling your stories can heal you, and it can heal those who hear them.

After a terrible trauma such as a brain injury, telling your stories about that experience can help you release bottled-up emotions that may be confusing or harmful. Telling your stories can lead you to an understanding of what has happened to you, why you feel so different, and why parts of your life are so changed. It also can foster understanding in your family and friends, employers and co-workers, as well as many others, because they have been affected, too — your story has influenced the world’s.

A brain injury can turn a life upside down. Before it, you had one story of your life. After it, you began a new and unfamiliar one. How do you learn to live within this new reality? If you can’t go back to the way you were, how do you figure out who you can be now? The answer: you tell your story, and it will show you how.

The Story of Your Life

By creating new stories of your life, you can reconstruct or re-energize it. You give yourself the opportunity to improve in those areas that no longer work well, and also build upon the strengths you have. You can use what you do know to create something you don’t yet know.

Here’s another quote from Christina Baldwin, “Something is happening in the power and practice of story: In the midst of overwhelming noise and distraction, the voice of story is calling us to remember our true selves.”

WithAfter Brain Injury: Telling Your Story, you can bring clarity to some of your old stories and also create new ones. You can begin to uncover and sort out issues related to your brain injury that affect the current Story of Your Life. By using this workbook you can begin to remember your true self, that essential part of you that never changes, even after the “overwhelming noise and distraction” of a brain injury. You can do this by learning how to journal.

What is Journaling?

“…writing can make pain tolerable, confusion clearer and the self stronger.”
— Anna Quindlen, Newsweek, Jan. 22, 2007

To journal is to write about your life—it is telling your story. Furthermore, “life-based writing is one of the most reliable and effective ways to heal, change and grow,” according to Kathleen Adams, author of Journal to the Self and founder/director of The Center for Journal Therapy.

Listening to Yourself

You constantly “talk” to yourself with your thoughts, but when you take a few moments to journal, you’re also listening. As you write, you retrieve information from the rich storehouse of your subconscious mind and imagination. Once recorded on the page, your words become useful in the continuing creation of your new, post-injury story.

With journaling, you can explore all aspects of your life and the emotions connected to them. You can grieve or shout with joy. You can let your writing take you wherever your mind, heart, spirit, and imagination want to go. You can expand your creativity, help yourself heal, and build self-confidence. You can uncover memories that may help you understand the chaos of the present. You can vent. You can break loose from old obstacles and traumas that are holding you back. You can begin to create your future by imagining yourself there. You can follow a path that leads you inward to heart-places where you have never before traveled. With patience and time, your journal writing will empower you as it transports you to deeper levels of self-understanding.

Writing and Healing

The healing, change, and growth that come from journaling can appear on the physical, emotional, mental, and spiritual levels. (Remember that these “parts” of us cannot be separated, so whatever affects one affects them all.) Psychologist James Pennebaker has long researched the links between expressing emotions through writing and healing, and his work provides some surprising information about the mind-body connection. He has conducted many studies in which people wrote about traumatic or stressful events for twenty minutes daily over several days. In this free-flowing writing, people kept their pens moving steadily and didn’t worry about grammar or punctuation. Based on blood tests administered before and after the days of writing, Dr. Pennebaker and his colleagues found that participants had stronger immune systems for up to several weeks afterward. The writers also scored higher in psychological well-being, functioned better in daily tasks, took fewer medications, and had lower pain levels.

Another journaling study was reported in the Journal of the American Medical Association (April 14, 1999). People with rheumatoid arthritis or asthma wrote for twenty minutes daily for three days in a row about traumas in their past. Four months later, nearly half showed significant improvement in their illnesses. In the control group, which wrote about more mundane topics, only a quarter of the people showed similar progress.

In a study with people who had cancer, they did “expressive writing exercises” — similar to journaling — for 20 minutes over several days about how their illness had changed them and how they felt about it. They reported that the writing helped to ease their stress about the cancer.

Journaling also has been shown to improve mental health in people with panic attacks and eating disorders, or who were victims of sexual abuse.

Why does journaling about traumatic events have a positive effect on physical ailments? Dr. Pennebaker believes that “actively holding back or inhibiting our thoughts and feelings can be hard work. Over time, the work of inhibition gradually undermines the body’s defenses.” On the other hand, “…writing or talking about upsetting things can influence our basic values, our daily thinking patterns, and feelings about ourselves. In short, there appears to be something akin to an urge to confess. Not disclosing our thoughts and feelings can be unhealthy. Divulging them can be healthy.” (Opening Up: The Healing Power of Expressing Emotions, James W. Pennebaker, Ph.D., The Guilford Press, 1990 and 1997)

Fortunately, this healthy divulging can be accomplished on paper, and it does not require involving another person — the only confidante you need is your journal.

But don’t think that your journal is a place for writing only about difficult or traumatic circumstances. In fact, it’s been found that people who journal over long periods only about the bad times end up feeling worse rather than better. So be sure to record positive happy events and situations as well. Just as your life has many facets, so should your journal.

Even though the authors of this book know of no studies yet reported with survivors of brain injury who journal, many other studies make clear that anyone can benefit from the practice. Throughout this book, you will see examples of journal entries. Most of them were written by survivors of brain injury, some of whom requested that we not use their real names. In the spontaneous spirit of journal writing, we left their original thoughts intact, including “creative” spelling and sometimes mismatched words. (If clarification was necessary, those words appear in brackets: [xxx].) A few entries were composed by the authors based on their experiences living with a person with a brain injury, leading journaling workshops, and providing speech and cognitive therapy for many years. All the journal entries appear in Courier font.

Journaling Tips

There is no right or wrong way to journal. You can adapt the process to suit yourself and your abilities. However, here are some tips that can help you get the most out of it.

For your eyes only

What you write in your journal is meant for no one’s eyes but yours. As you write, don’t fret about anyone judging your words, or you. Just go for it!

Write without rules

This writing is not graded and it’s not meant for publication, so don’t worry about spelling, punctuation, or grammar. If you spend time deciding where to put a comma or puzzling over spelling, that kind of intellectual processing stops the spirit-centered flow and can dam up the magic and mystery trying to emerge. As much as possible, let your hand write whatever it wants to write.

Write often

If you can, write in your journal frequently. If you write daily or several times a week, you will find it easier to stay in the journaling flow over time. You may grow so fond of it, you may come to miss it if you skip a day! However, only you can determine your best writing schedule, so write when you are moved to write.

Write by hand

If at all possible, use a pen or pencil to write your journaling entries. For some reason, the physical act of writing seems to open up the mind and allow more access to creativity and insights. However, if your brain injury or another disability prevents you from using a writing instrument, or if you simply prefer to use a computer, do so if you can. If you are not able to type, you can speak your responses into a recording device (many inexpensive recorders are available) or use voice-recognition software on your computer. You can also ask a trusted person — friend, family member, or counselor, for instance — to write your responses as you speak them. (Thank you to John Fox, CPT, for this suggestion.) A few of the exercises in this book require crayons or colored markers, but if you’re not able to draw, you can still respond to the prompts that accompany the drawing.

Try freewriting

Use the technique called freewriting if possible. This means you put your pen on the paper and keep going. Aim for 10 to 20 minutes, and set a timer or alarm if you have one. However, just a few minutes will work if you’re pressed for time or that’s what your abilities allow. If at all possible, keep your hand on the page, and keep it moving for the whole time. If you come to a dead end for a moment, you can write something like, “I’m stuck, I’m stuck,” or repeat your last few words. New thoughts will appear soon for you to write. Freewriting lets insights come to light that otherwise might never appear in your conscious mind, and they are like gold nuggets — something valuable worth waiting for.

Go with the flow

Don’t plan ahead what you’ll write and don’t force yourself to be logical. Just write whatever rises up. When you get into the flow of the writing, it’s almost as if the words move directly from your heart through the pen and onto the paper, as if your conscious mind is not involved in the process. That’s good! This flow can be the entry into an uncharted insight or connection you’ve never noticed before—the beginning of the new Story of Your Life.

Silence the censor

Do your best to not censor or edit yourself. Just write whatever comes out. If you can’t think of a particular word, use another word, or draw a line instead, like this: ____________. You can fill in the blank later.

Be kind and keep going

Be kind to yourself. Don’t judge yourself or your writing. Whatever you journal is simply an expression of what you’re feeling or thinking at that moment. It’s not written in stone, and you can always change your mind later. Sometimes the words will flow out of you; other times they will need a push (which is when you should keep your pen moving anyway). Whatever the case, keep going. Journaling gets easier the more you practice it.

Use your prompts

In this book, you’ll most often use what’s called a “prompt,” a phrase to get your writing started. You begin with the prompt, then take off from there. Some prompts will get your juices flowing while others won’t. That’s to be expected. If you start writing from a prompt and it doesn’t work for you, you can write something else, but at least try writing from the prompt first. And if you begin with the prompt, but the writing takes you in a new direction, that’s fine. Go with the flow of your thoughts, wherever it takes you. Sometimes one prompt will be similar to another close by, but both are meant to help you explore the same topic from a slightly different angle.

Do what you can

Not everyone who uses this book will be able to write for each exercise or each prompt. Your ability and desire will depend on the type and extent of your injury and other factors. Just do the exercises you are capable of doing. Over time, you may be able to advance further.

Just write

Most of the exercises also have a place for a journal entry that does not begin with a prompt. When you want to write about the topic without the structure of a prompt, look for “Freewrite.” Furthermore, if you ever want to journal without this book, you can use a prompt if you have one, but know that it’s not necessary. Just begin to write about whatever is on your mind.

Skipping prompts

If a prompt makes you uncomfortable or nervous, feel free to skip it. However, consider three things before you decide. First, no one else ever has to see your writing, so you can be as personal and open as you want. Second, if you can manage to write about something that frightens you or makes you nervous, your uneasiness may slowly dissolve. Third — this is the most important consideration — respect your feelings when you really don’t want to pursue a topic you find painful or frightening. The purpose here is not to force yourself to write about difficult subjects, but to realize how far you want to venture at this point in your journey. If you don’t want to use a particular prompt one day, know that you’ll probably feel more comfortable using it another time. And if you have a counselor or therapist, please discuss the prompts that make you uneasy.

Start the journey

Remember: After you write in your journal, you will be a different person than before you wrote, if only in the tiniest way. You reached inside and experienced something new within yourself. You put your thoughts on paper and created a new story, even if it was only a few sentences long. Sometimes that little seed is the first step in a wonderful, exciting journey.

Group Journaling

Journal writing is a usually solitary activity, yet journaling with others can offer companionship and social contact — both important concerns for survivors. The authors have led journal groups for survivors of brain injury for several years. In our groups of four to six survivors, we begin with an explanation of the first topic for the day, and then everyone writes from the same prompt. We normally cover two or three prompts in a ninety-minute session. After each writing, those who wish can read their journal entry to the group. This reading aloud is absolutely voluntary; no one is ever pressured to do so.

We have only two rules for our groups. If you decide to form a journal group, please follow them. Remember:

Rule 1: Listen to one another with respect.

Don’t judge other people or what they have written. Everyone in the group has his or her own story, and it’s not your job to judge them in a negative way, although people often appreciate supportive comments. A journal group should be a safe place. If people make negative comments about each other, that safety will disappear.

Rule 2: What happens in the group stays in the group.

Everything revealed there is confidential and must not be discussed outside the group with anyone else.

 

On some days you may be angry or frustrated. You might want nothing more than to vent in your journal. When that happens, feel free to plunge right into the writing without relaxing first. Let it all out on the page! WRITE BIG if it feels good. Who says you have to write on the lines? Ignore the lines and scribble away! Chances are, the act of writing will reduce or release the upset you’re feeling, and you might even find a solution to the problem. Remember, this is your journal and you are writing pieces of your story.

In the following pages, you will find journaling topics divided into the following chapters, each containing exercises with a variety of prompts:

  • After Brain Injury: What Happened? What Can I Discover?
  • Loss and Change: Brain Power, Memories, and More
  • Relationships: Family, Friends, and Others
  • Adjustments: Anger and Grief
  • Back into the Community: Moving Forward With Hope
  • Later On: Any Positives?
  • Miscellaneous Prompts

The exercises in this workbook are labeled “My Story,” and they are numbered according to the order in which they appear in the chapters, for easy reference. Each exercise generally has several prompts. For instance, “My Story 1-1” is Chapter 1, first exercise, and “My Story 5-4” is Chapter 5, fourth exercise.

Recap

When you journal, it is your time for your writing. With this book, you can move in order through the topics and prompts or you can jump around, choosing whichever one feels right at the moment. You can use each exercise numerous times or only once or never (although we hope you try them all). Remember that no matter how many times you write from the same prompt, you’re likely to discover new insights or alternate ways of looking at the situation each time you choose it. You can journal once a day or several times a week, or whenever the mood strikes and time allows. Having a regular journal practice allows you to track your progress, especially as you move through difficult periods in your life.

You can write in this book, or you can use a separate journal. There are many beautiful journals available today—just be sure to choose one that’s comfortable to use and easy to write in. You can also use a three-ring binder and add pages as necessary. If you use a separate journal or binder, write the date and the prompt at the top of the page and take off from there. By dating your entries, you can follow the pattern of your thoughts over time.

Each time you journal, remember:

  • Keep your pen moving for the whole time if at all possible.
  • If you get stuck, write “I am stuck” or keep repeating the last few words until the flow begins again.
  • Go with the flow of your thoughts—don’t think or plan ahead about what you will write.
  • Do your best not to judge or censor yourself or the words on the page.
  • Give yourself wholehearted permission to write whatever you want to write, and then do it.

If you like, begin with a short time of relaxation. After that, if you have a timer or an alarm, set it for however long you want to write, say 10 or 20 minutes, so you will not have to interrupt the flow of your writing to check the time. Then pick up your pen or go to your computer or recording device and begin.

From After Brain Injury: Telling Your Story, A Journaling Workbook by Barbara Stahura and Susan B. Schuster, MA, CCC-SLP. © Lash & Associates Publishing, 2009. Used with permission. www.lapublishing.com. Learn more about Barbara Stahura and her journaling after brain injury blog.

Comments [4]

I can't wait to get started this is an answer to prayer thank you .

Jul 3rd, 2014 10:25am

Great information! Also, if someone has difficulty with the physical act of writing, he or she can use a digital micro recorder to get their thoughts down or Dragon Naturally Speaking software. - Ron Sasso, M.S., L.P.C., C.B.I.S.T.

Apr 15th, 2014 7:00pm

Very helpful information!

Apr 28th, 2013 10:34am

Thank you, Barbara and Susan. I have seen those you have helped and recommend your work highly. Dr. Steven Gurgevich

Aug 3rd, 2012 11:06pm


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