Change Your Story, Change the World: Yes, You!

“We tell stories so we can live.” Joan Didion, as quoted by Lynne McTaggart in I AM

In the past week, I’ve watched the beautiful, inspirational documentary I AM twice and heartily recommend it.  It’s a film by Tom Shadyac, a Hollywood director who became wildly successful and rich with his comedies, including Ace Ventura, Pet Detective; The Nutty Professor; and Bruce Almighty, which have grossed more than $2 billion. He did the usual thing when all that money fell into his grasp—bought a big mansion, then a bigger one—17,000 sq. ft.! Filled them both with expensive furnishings, art, and antiques. Flew on a private jet and drove luxury cars. He was living the good life, right? Ah, yes, the American Dream. But he knew he was not happy.

Then his life was instantly changed in 2007 in a way familiar to many of you: he had a cycling accident that left him with a TBI, and then he suffered for many months with post-concussion syndrome. While he says he was not suicidal, the constant torture visited upon him by his symptoms left him thinking about death as a release. He asked himself, “If this is it for me—if I really am going to die—what do I want to say before I go?  What will be my last testament?”

What Tom discovered, “…when I began to look deeply, was that the world I was living in was a lie. Much to my surprise, the accumulation of material wealth was a neutral phenomenon, neither good or bad, and certainly did not buy happiness.”

Then one day, his post-concussion symptoms started to lift. When he was able, he set out with a small film crew to talk with some of the greatest minds of our day to find answers to two questions: What’s wrong with our world? And what can we do about it?

I AM is the story of his life-changing search for answers to those questions. Some of what he learned:

~ Science has shown us that everything (yes, this includes us, too!) is connected at a very deep level.

~ The basis of nature is democracy and cooperation, not competition.

~ We actually function better and remain healthier when expressing positive emotions, such as love, care, compassion, and gratitude, versus their negative counterparts, anxiety, frustration, anger and fear.

~ We are far grander than we’ve been told.

~ Science has discovered elements that undermine everything we’ve been told about how we work and how the world works.

~ We are wired at a primordial level to feel what another person feels.

~ In many native cultures, owning much more than you needed was a sign of mental illness.

What this all means: Even though we may believe that we affect only our own small sphere of influence, our interconnectedness means we still change the world, for better or worse. And, yes, this is true even if you’ve had a brain injury. You don’t need to be a zillionaire or a high-powered celebrity to change the world, either. You can do small good things, like smile at someone who’s having a bad day. Like picking up after yourself so your mom or spouse or caregiver doesn’t have to. Like keeping a good attitude when you’d rather be crabby. Small things, yes, but their goodness spreads like ripples in a pond.

Today, Tom has changed the story of his life. He lives in a quiet mobile-home park, rides his bike to work, has sold most of his old possessions and given away much of his money (and will continue to do so), and teaches at a local college. And he’s truly happy. His new philosophy: “St. Augustine said, ‘Determine what God has given you, and take from it what you need; the remainder is needed by others.’  That’s my philosophy in a nutshell,” Shadyac says, “Or as Gandhi put it, ‘Live simply, so others may simply live.’”

You can purchase I AM here and here.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• One small good thing I can do is…

• I can simplify my life by…

• Before my life is over, I want to say…

• I can extend a hand to others by…

If you’re a family caregiver:

• One small good thing I can do is…

• I can simplify my life by…

• Before my life is over, I want to say…

• I can extend a hand to others…

Brain Injury News

Here are a few items of interest from the world of brain injury.

• Brain Injury Global Picnic 

 The Brain Injury Global Picnic is a world-wide event to educate and raise awareness of brain injury that is set to take place on June 30. Brain injury associations, charities, and related organizations from across the world are being encouraged to take part in the Global Picnic. The picnic is the brainchild of TBI survivor Annie Ricketts, who envisioned it in a powerful dream. She is working hard to make the picnic a reality around the world that will “smash the world record for the most people picnicking in 24 hours!”

• Even mild TBI alters brain function

As is being more widely acknowledged, even mild brain injury—also known as concussion—can significantly harm brain function, either for a short while or for the rest of the person’s life. New studies are demonstrating why this is so.

And here is a post from Broken Brain–Brilliant Mind with some good comments and questions about this information.

• New scans look deeper into the brain than ever

A new scanning technique, called high-definition fiber tracking (HDFT), allows doctors to predict the brain functionality that may have been lost after a TBI. HDFT makes it possible to see the fiber tracts in the brain and pinpoint the broken ones to predict what they might mean for the patient’s recovery. And, the images are produced in vibrant color—very cool!

• Pro athlete deaths from brain disease

The recent tragedy of former NFL player Junior Seau’s suicide once again highlights the need for more research into brain injury in sports, as two major research teams compete for athlete’s brains to study.

• Think cheerleading is a safe activity?

If so, you’re thinking of cheerleading as it was 30 or 40 years ago, not in 2012. it  has become “the most dangerous female sport when we look at the number of catastrophic injuries,” including brain injury and spinal cord injury.

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Journaling after brain injury doesn’t always have to be about brain injury. Today’s prompts from Ch. 7 of After Brain Injury: Telling Your Story are more general and can apply to many parts of your life and experience. Writing from prompts like these can take your writing in new directions and bring up new insights.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• I was so nervous when…

• One thought that always lifts me up…

• Something in myself I’m satisfied with…

• When things don’t go my way, I…

• A bad habit I’d like to eliminate is _________________________ because…

If you’re a family caregiver:

• Today, one thing I want from life is…

• In the future I will be grateful for…

• If I knew I could not fail I would…

• I will always believe in…

• If I had only $5 to my name, I would…

Story Shapes Your Brain

“…the external world comes to be represented within our brains and actually forms our physical brain’s synaptic (nerve) connections so that we have a model or a mirror of the external world…. This happens through our internalization of the stories that are being told around us.”

~~ Lewis Mehl-Madrona, MD, PhD in Healing the Mind Through the Power of Story: The Promise of Narrative Psychiatry

If you’ve read this blog for a while, you know that I’m fascinated by the power of story. (And that’s why I titled my book After Brain Injury: Telling Your Story.)  Since our brains organize around story, we humans perceive everything as story, interpret our lives through story, and use story to make meaning of our experiences. Furthermore, our stories change throughout our lives, and, as neuroscience has discovered, our brains physically change in response to those stories. Don’t know about you, but I find that amazing!

So when I came across Dr. Mehl-Madrona’s book Healing the Mind Through the Power of Story, it drew me right in.

He’s a narrative psychiatrist, meaning that he “focuses on finding sources of strength and meaning” in his patients’ lives. In this book he tells the stories of many patients he has helped by assisting them in transforming their personal stories so they could heal—even people with schizophrenia and bipolar disorder, often without the use of drugs.  Even though he doesn’t mention brain injury, the concepts remain the same: Change your story and change your life.

As Dr. Mehl-Madrona writes, “Moving toward a narrative view of illness, whether or not we can find tissue damage, will liberate us from notions of shame and inferiority. It’s not that we are bad, we just grew up with bad stories, meaning that these stories are no longer the more efficient way to see the world and satisfy our needs and wants.” (italics mine)

If you or someone you love has sustained a brain injury, you have experienced how it changed your story—without your permission and without warning. Afterwards, it’s up to you to decide what your story will be. Even with the many limitations and changes imposed by brain injury, you can determine large parts of your new story, particularly the internal story you tell yourself–which is the most important one.

For instance, it’s common for doctors and therapists to tell people with brain injury that they will reach only a certain level of recovery and that they have only so long to do that. Yet there are thousands of survivors of brain injury, including my husband, Ken, who have far surpassed any expectations pronounced by the healthcare system. These people (and often their families) decided to not believe the story they were told and proceeded to create a different new story, one more true to their abilities and desires. True, their new stories have to incorporate the reality of having a brain injury, but beyond that, they can shape their stories—and their  brains, and their lives—far more than we once believed was possible.

What’s your story? How much power do you give to the stories others tell you about you? See the journaling prompts below to do some writing about this.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• One way my story changed after my brain injury…

• One way my story remained the same after my brain injury…

• I decided to not believe this story told to me about brain injury:

• Two parts: 1) One story about brain injury that proved harmful to me:

AND 2) I changed that harmful story by…

 

If you’re a family caregiver:

• I give a lot of power to a story about caregivers that says…

• One way my story changed about (loved one’s) brain injury…

• One way my story remained the same after (loved one’s) brain injury…

• Two parts: 1) I decided to not believe this story about caregiving…

AND 2) Instead I chose to believe…

Journaling Is Like a Hot Bath

“You can change the world with a hot bath, if you sink into it from a place of knowing that you are worth profound care, even when you’re dirty and rattled.”    ~ Anne Lamott

Isn’t this a beautiful quote? It warms my heart every time I read it. The phrase “profound care” invites me to sink into it, like that hot bath, and let the waters of deep, intense care embrace me. This sentiment applies to anyone, of course, but, to my mind, it applies especially to family caregivers. These heroic people certainly are “worth profound care,” even though they don’t often allow themselves to believe it—or experience it.

Family caregivers are on my mind more than usual this week. I’ve been working on a presentation titled “Care for Yourself, Too: Journaling for Family Caregivers” that I’ll be delivering at the Brain Injury Association of Washington’s annual conference  in Seattle next week. I have only 75 minutes to inform family caregivers about journaling and how it can benefit them, and then lead them through three short “writes.” When they leave that room, I want them to know that even short bits of writing in their journals a few times a week can relieve stress, lower blood pressure, strengthen immune function, boost mood, lift spirits, improve sleep, offer comfort, build resilience, and so much more.

My caregiving experience, as difficult as is was, was relatively short-lived compared to that of numerous family caregivers, who may be called on to provide care for many years. Even so, journaling was a saving grace for me during that time (and many times since). The pages of my journal became a sacred container into which I could pour out all my feelings about what was happening to Ken and me without fear of judgment or criticism, a place where I could vent or whine or moan, and also a place where I could celebrate those moments, large and small alike, that showed how Ken was recovering.

I took plenty of hot baths during that time, after coming home exhausted from a day at the hospital or the rehab facility. Sinking into a tub of pleasantly hot water is such a simple, restorative pleasure. But back then, more than eight years ago now, I didn’t know about “profound care,” although I sure could have used some. I lived with this crazy idea that I had to be this self-sacrificing caregiver to my grievously injured husband, no matter what the cost to me. It was some crazily romantic notion of the “noble wife” giving all for love. Yet in retrospect, I can see that if my time of caregiving had gone on much longer, I would have had to change my beliefs in order receive my own profound care—or pay a hefty price in poor physical health, emotional breakdown, and ongoing mental anguish.

Journaling won’t solve all your problems. It won’t heal your loved one’s brain injury, and it won’t restore your life to the way it used to be. But it will give you a safe place, a little bit of solid ground, on which to stand as you continue your heroic task. It can be your metaphoric  hot bath where you give yourself the profound care you so deserve.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• Make a list of 5 things you do to care for yourself, or those ways you comfort yourself during difficult times. Then write about them in whatever way feels best to you.

• Can  you offer some care, even in small ways, to the family member who cares for you? Write about it, beginning with: I care for (name of caregiver) by…

If you’re a family caregiver:

• Make a list of 10 ways you currently care for yourself, large and small. Can’t think of 10? Then complete the list with ways you want to begin caring for yourself.

• Choose an item from your list and write in-depth about it. As you write, let yourself feel what it’s like to experience that form of self-care, or what it will feel like when you start doing it. Describe how this experience feels to your body and your emotions. Really dive into it.

• For me, profound care would be….

Stories We Tell Ourselves

“…when we lose the stories we have believed about ourselves, we are losing more than our stories, we are losing ourselves.” Lauren Groff, Arcadia

While reading a book review of Arcadia, I saw this quote and immediately tore out that section of the page. Now that I’m so interested in the concept of our story and how it changes after brain injury, quotes like this seem to pop up everywhere. And every time I read one, I’m struck by how true it rings!

As Lauren Groff tells us in this quote from her novel, our stories—and, I would include, the meanings we assign to them—are crucial to our lives. We live so deeply within our stories, using them to structure the reality of our lives, that when an important, familiar story is yanked out from under us, as can happen with brain injury, we wonder who we are now. As a person with brain injury or a family caregiver, we desperately want to know who we can be now in this unfamiliar, confusing, even frightening new story

Here is one example of what I mean by “story”: “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.” (from After Brain Injury: Telling Your Story)

What stories are you telling yourself about living with a brain injury? Do you continue mourning what you lost and stay stuck there, long after the injury? Or do you decide to make the best of the abilities and strengths you now have? Caregivers, do you refuse to take good care of yourselves, believing that you are not worthy or that you no longer matter in comparison to your injured loved one? Or do you do your best to find ways to offer loving, gentle attention to yourself as well, believing that you are indeed worthy of self-care?

After a trauma or a painful time, if you don’t know who you are or who you can be now, write your story—journal it—and your story will tell you.

For an amazing story of one artist who fought back from a horrendous TBI and continues making her gorgeous art, watch this short video about sculptor and painter Ginny Ruffner. A brain injury meant she could not continue to live her story in the same way, but she discovered new stories for herself and today is as vibrant and creative as ever. Thanks to BrainLine.org for making this available.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• One story I believe about myself…

• One story that holds me back…

• One story I no longer choose to believe…

• The stories I tell myself about myself…

• In order to move out of this stuck place, I will create a new story that tells me…

If you’re a family caregiver:

• The story of my life as a caregiver is…

• One story I believe about caregiving and me…

• One story I no longer choose to believe…

• A story that prevents me from taking good care of myself…

• In order to move out of this stuck place, I will create a new story that tells me…

After Brain Injury: Acceptance and Accommodation

Throughout life, we often need to change the way we do things. When our old ways simply don’t work anymore, or produce results that harm rather then help us, it’s time for a change. You know what they say: If you keep doing what you’re doing, you’ll keep getting what you’ve got. From personal experience, I can tell you how true this is!

Living with a brain injury usually requires making changes. People often require some workarounds or accommodations to be able to continue certain activities they used to do with ease. For instance, you might need a wheelchair in order to be mobile, or you might need an augmentative communication device to speak for you.

Lesser but no less important accommodations can include many smaller adjustments and workarounds. These can range from using a written day planner or a cell phone app to remind you of daily activities, to needing special prism glasses for reading or using voice-activated software on your computer. If you can no longer drive, you may need to use public transportation. You may need your employer or school to make some accommodations to allow you to continue working or studying there (this is required under the Americans with Disabilities Act). Maybe you just need to take more time to accomplish a task or devote more concentration to following directions or a recipe. Physical, occupational, and speech therapists who work with people with brain injury can provide many more strategies and methods for each situation.

Some people don’t want to accept their new post-injury situation, believing that if they do, this means they are giving up hope of further recovery. (In addition, sometimes a brain injury can leave people unaware of their new limitations.) “However, acceptance does not mean giving up. Accepting what has happened simply means you realize that your situation is now different than it used to be. You sustained a brain injury, and you have changed as a result. If you stubbornly refuse to accept what happened, you drain your energy by fighting against something that cannot be changed. That leaves you with little or no energy to continue making progress in your recovery.

“Consider a car with a tank full of gas. If the front of the car is up against an unbreakable, immovable wall but you refuse to accept that fact, you can start up the car and jam down the accelerator as long and as hard as you want, but you won’t go anywhere. The tires will spin uselessly, mechanical parts of the car will burn out, and eventually all the gas will be used up. On the other hand, if you accept the presence of the wall, you can back up the car and then turn the wheels so you can drive in various directions. In accommodating yourself to the presence of the wall, you can move. You might have to maneuver around other obstacles, or discover that the car doesn’t get the gas mileage you would like, and perhaps the radio doesn’t work so well anymore, but you can make progress in new directions.” (from After Brain Injury: Telling Your Story)

How do you feel about accepting and accommodating the changes caused by your brain injury? For family caregivers, whose life has also changed because of your loved one’s brain injury: Are you able to accept those changes and work with them?

See the prompts below to help you write.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• I now accept that I…

• I can’t do __________________________ any longer, but I can…

• It’s exciting to find new methods that allow me to…

• In order to move ahead in my recovery, I choose to adapt to…

• I’m still resisting some accommodations because…

If you’re a family caregiver:

• I now accept that…

• I can’t yet accept __________________________ because…

• I’m OK with making the necessary changes to my life…

• Maybe I can begin to accept some of the changes if…

• I don’t like the word “accept” when talking about brain injury because…

Once Upon a Time

(adapted from an exercise in After Brain Injury: Telling Your Story)

“Once upon a time….” Who hasn’t heard those words? The age-old beginning of fairy tales, they immediately focus you on the story to come. With excitement, you wonder what adventures await the hero or heroine.

You can also use these words for another purpose. Sometimes, you want to write in your journal but find it difficult to begin because the subject is a painful or difficult one. When that happens, it can be helpful to put a little distance between yourself and the subject. Using a form associated with comfort and curiosity, as “Once upon a time” is for many people, can enable you to still tell the truth of your story while remaining somewhat emotionally detached. It can enable you to explore and investigate without feeling quite so involved.

Furthermore, you can write about yourself as the hero or heroine—because if you are living with a brain injury or caring for a loved one with such an injury, you are!

Another distancing method is to tell your story in the third person rather than first: use “he” or “she” when referring to yourself instead of “I.” That way, it’s almost as if you’re writing about someone else rather than yourself. This puts you at a slight remove from the  emotions of the story and can help you to get the words on paper.

You can also combine both of these techniques. Begin your journal entry with “Once upon a time, (your name) had a brain injury and…”

Or, if you’re the caregiver, begin with “Once upon a time, (your name) became a caregiver to (loved one’s name) and…”

You may be surprised at how much these techniques can make your journal writing more healing, and even creative, when dealing with difficult subjects.

However, if the topic feels too daunting or frightening even when using these techniques, please don’t write. Wait until you’re feeling stronger or have some support close at hand, as from a therapist.

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And have a look at Kara Swanson’s blog post for March 30, “There’s more than one way to skin a cat.” If you fear that life after brain injury means you can’t do what you used to do, she gently and humorously reminds that much else is still possible.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• Write using “he” or “she” when referring to yourself,  beginning with, “Once upon a time, (your name) had a brain injury and….”

• Then write it in the first person, using “I” when referring to yourself: “Once upon a time, I had a brain injury and…”

• Then compare the two. It’s possible that you will tell the story in slightly different ways, which can give you new insights into your situation.

If you’re a family caregiver:

• Write using “he” or “she” when referring to yourself,  beginning with, “Once upon a time, (your name) became a caregiver to (loved one’s name) and…”

• Then write it in the first person, using “I” when referring to yourself: “Once upon a time, I became a caregiver to (loved one’s name) and…”

• Then compare the two. It’s possible that you will tell the story in slightly different ways, which can give you new insights into your situation.

Your environment shapes your brain

I‘ve recently become intrigued by psychogeography, which is, how the environment you live in shapes the way you think. And, I would add, how you feel. It makes sense, don’t you agree? We can’t help but be affected by our environment, even if the effects fall below the level of our awareness, as most of them do. One example: compare how you feel in a cramped, dark, stuffy room versus how you feel outside on a balmy, sunny day. Then think about where you live—city or country? plains or seashore? mountains or desert? apartment or house or mobile home?—and how being in that environment makes you feel.

Having grown up in Indiana, with its four distinct seasons, I missed those seasons for the dozen years I lived in Tucson, which is high desert. Sure Arizona has seasons, but not in the way my body and psyche expected. And I longed for huge, majestic trees, expanses of green grass, the blooming of dogwood, redbud, and forsythia to announce that Spring had arrived and the turn of the leaves to herald Autumn. All these things had been imprinted on my body and psyche from birth; my brain expected them. So, even though I got used to the so-called seasons of Arizona—sort-of winter, kind-of spring, SUMMER/SUMMER/SUMMER, a couple weeks of fall—I never felt completely at home there.

In the early 1990s, I went to a women writer’s conference near Saratoga Springs, New York, which is blessed with a profusion of majestic trees and lush lawns and gardens. I felt  embraced by all the green and luxuriated in it. A woman came to the conference from New Mexico, her birthplace, with its wide-open vistas where the horizon is often visible no matter which way you turn. She told me she felt claustrophobic in Saratoga Springs and trapped by the trees, which blocked her view of the horizon. We were both reacting to our psychogeography.

Now that I’m back in Indiana, I feel at home once again. Looking across the street to the left, I see woods with sycamore and ash trees that reach 40 or 50 feet into the blue sky; their new leaves are the delicious green of early spring. In the old cemetery directly across the street, the deep carpet of grass that stretches back to more woods is sprouting yellow dandelions. There’s not a cactus in sight. Just looking out the window warms my heart and makes me feel that all is right with the world. These sights hit my neural pathways that say, “Home!” and I know in my heart and soul that I am home again at last.

How does the geography of where you live affect you? Have your feelings about where you live changed because of your brain injury? Do you react differently to your environment now?

Perhaps you used to feel comfortable in large spaces, but now they’re overwhelming, so you feel safer in small, contained spaces. Perhaps the familiar din of the city used to be comfortable or something you could block out, but now it’s too stimulating and even painful. You may be more sensitive to your environment, or less.

Exploring these issues through journaling can help you determine why you feel comfortable or not in your post-injury environment, and that can point you in the direction of any changes you can make to feel better. Before you begin to write, do a relaxation exercise and let yourself feel the space around you. What do you sense? What is your body telling you? What is the environment saying to you?

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

 

If you’ve had a brain injury:

• List five things about your environment—such as an object, temperature, sounds, etc.—and then write about one that feels like it wants to tell you something. Begin with:

As I listen to ________________________, it tells me…

• Compare how you felt in your environment before and after your brain injury. Begin with:

In this place before my brain injury, I felt…..

and then use: In this place after my brain injury, I feel….

• One thing where I live that gives me joy…

• One thing where I live that upsets me…

 

If you’re a family caregiver:

• List five things about your environment—such as an object, temperature, sounds, etc.—and then write about one that feels like it wants to tell you something. Begin with:

As I listen to ________________________, it tells me…

• Compare how you felt in your environment before and after your loved one’s brain injury. Begin with:

In this place before ________’s brain injury, I felt…..

and then use: In this place after ________’s brain injury, I feel….

• One thing where I live that gives me joy…

• One thing where I live that upsets me…

Caregiver Distress

Having taken care of Ken after his TBI, I can attest that family caregivers suffer a lot of distress. A counselor at the time told me I probably had secondary traumatic stress, and even though I’d never heard of that before, I believed her. Especially in the early weeks and months, I couldn’t sleep without prescribed sleep aids (and even then, not very well or long enough), often couldn’t eat enough, had ongoing severe heart palpitations, and always felt afraid when not in Ken’s presence (what if some other terrible thing happened to him and I wasn’t around to prevent it—as if I could?). I was often angry and confused. All the stress of dealing with our frightening situation threw me into deep physical, emotional, and psychological distress.

In all honesty, I don’t know how well I would have continued as a caregiver if Ken hadn’t improved so well after the first seven or eight months, and continued mostly on an upswing after that. I have the utmost respect and even awe for family caregivers who remain in that position for years and even decades. They are truly heroes.

Fortunately, I was able (most of the time) to not show my anger to Ken. It wasn’t his fault that this calamity had befallen us, and he certainly didn’t need me being angry at him for something he could not control. But keeping anger under wraps is tough, and that had a negative effect on me. As you might suspect, I journaled a LOT to help release my anger in a healthy way and to find solutions to the situations that angered me.

If I had allowed my emotional situation to affect Ken, it could have affected his recovery. A new research study reported in Archives of Physical Medicine and Rehabilitation suggests that “Caregiver emotional dysfunction or distress can negatively influence postacute rehabilitation for patients with traumatic brain injury (TBI)….”

The researchers found “a significant interaction between caregiver emotional functioning and time from injury” and that “better emotional function in caregivers” was associated with better scores on the assessments used in the study. This was true when the person with brain injury entered rehab programs within six months of the injury, but not for those who entered later.

The study concluded, “When designing services, rehabilitation professionals should carefully consider the resources of caregivers, including time, to avoid overwhelming caregivers who are already stressed.”

For some excellent advice and some easy ways to take care of yourself, Caregivers, see Jan Spilman’s post on her Caregiver Wellness blog. Actually, these are great tips for everyone!

Below you will find some journaling prompts about caregiver distress. If you need relief, choose one or two and write with all the honesty you can muster! If you’re have a brain injury, check the prompts for ways you can thank your caregiver.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• I want to help (caregiver’s name) relieve some stress by…

• If you haven’t thanked your caregiver in a while, find a way to say “Thank you for everything you do for me.” If necessary, you can write what you want to say and then read it to your caregiver, or let him or her read it.

• I’m thankful for the care (caregiver’s name) gives me because…

If you’re a family caregiver:

• Make a list of three to five ways you can relieve your stress (use Jan’s list if you  can’t think of any on your own), and then choose one to write about. You can begin with:

• I want to relieve my stress with (a stress reliever) because…

• My greatest stress as a caregiver is…

• One positive thing I learned about myself as caregiver…

What’s behind the misdiagnosis of brain injuries?

Normally I don’t write on this blog about topics like misdiagnosing brain injury, which is a common occurrence that causes much needless suffering and expense for the people involved. But then I read an article by a nurse specializing in brain injury and neurological conditions who has herself sustained several TBIs. (Thanks to Broken Brain – Brilliant Mind for posting the link to the article.) She presents a disturbing look at why misdiagnosis is common, even among healthcare professionals. She also presents another, frightening side of the coin, about a female patient who complained about a serious problem with a male respiratory therapist, but no one believed her because “she has a brain injury.”

As the nurse writes, “So if the healthcare professionals do not believe the patient, how do they expect family, friends, and others to become educated, be supportive, and help with this devastating injury?”

Have a look at the article and see what you think.

If Ken had to have a brain injury, I think he was lucky to have sustained his TBI in such an obvious way: a hit-and-run driver turned left in front of his motorcycle, despite Ken’s having the right of way, and his head smashed into the rear of the car as he flew off his Ducati. (I give thanks still that he was wearing an excellent helmet.) It was clear to witnesses and the EMTs on the scene that his brain was likely badly damaged. Even so, at several times during his hospital stays, a nurse or another healthcare provider who should have known better told him, “ You look just fine. Why do you need (whatever it was we were requesting)?” I’ll admit to a desire to slap them into awareness.

However, many people with “mild” TBIs do not realize that anything is wrong until days or even weeks after a blow to the head, but by then, they don’t connect the injury with the problems. Or, if they do, they may not be able to find a healthcare provider who believes them and asks the right questions and offers the right tests to come to the right diagnosis. (The term “mild” doesn’t help matters, either.) The myriad symptoms a brain injury can produce can sound unbelievable—but that does not mean they are not real, and it does not mean the person is a hypochondriac, a “mental case,” or a liar.

One way we can begin to improve the situation is to speak up and refuse to give up. For better or worse, brain injury is much in the public eye these days, so speaking up to the people in your own life, and through blogs and other avenues will keep the facts out there in front of people. And remember that journaling privately about such issues can help you to better cope with the situation.

What has been your or your loved one’s experience with receiving a correct diagnosis of brain injury? See the prompts below and write about it for yourself.

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Today’s journaling prompts

If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• I received my diagnosis of brain injury…

• Even though I knew something was seriously wrong…

• My healthcare providers believed/would not believe what I told them and…

• The most frustrating thing about my healthcare for brain injury…

• The most positive thing about my healthcare for brain injury…

If you’re a family caregiver:

• I received the diagnosis of (name of loved one) brain injury…

• Even though it was obvious something was wrong with (loved one)…

• (My loved one’s) healthcare providers believed/would not believe us when…

• My most frustrating moments of dealing with the healthcare system…

• The most positive thing about dealing with the healthcare system…