Category: Traumatic brain injury

Telling your story

You are the author of your life story. By understanding the power of story, you can change the way you carry your life circumstances, no matter what has happened to you… You have the power to shift your perspective from victim to victor, from survivor to thriver, from loser to winner.

— Sandra Marinella, MA, Med, The Story You Need to Tell

Journaling our stories is writing or recording thoughts, feelings, and experiences. Doing this can show us how we perceive and interpret what we have experienced. It can also help us shift our perspective on events to move forward more positively.

In their journaling workbook, After Brain Injury: Telling Your Story, Barbara Strahura and Susan B. Schuster write,

Telling your story helps you to cope with new situations and 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.

They go on to write,

A brain injury can turn a life upside down. Before it, you had a 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.

For many people who live with brain injury, journaling their story has provided the opportunity to build upon the strengths they have and helped them work towards goals.

Before you begin

Journaling is not just expressing the sad or traumatic events of your story. It’s important to write about that, but it may make you feel worse instead of better if that is all you include.

Make sure to include happy events and moments that took place. Including what you’re grateful for is an excellent practice, too.

By including all aspects of your story, journaling can help you begin to move through, forward, and further away from trauma, negativity, and sadness and towards a more optimistic, positive, and centred place.

Relaxation techniques

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

There are a few things you should do before you begin journaling:

• Before you begin, gather your journaling tools (journal or paper, pen or pencil, tape-recorder, or sit in front of your computer etc.)
• Put on music, that you find soothing. If this is distracting for you, you can also focus on creating a silent atmosphere
• Sit comfortably with both feet on the floor if possible and your hands in your lap
• Close your eyes, and take a deep breath through your nose. Hold the breath for as long as it’s comfortable. Exhale through your mouth. Repeat this a few times
• With your eyes still closed, let your breath return to your normal rhythm. Slowly begin to notice your body starting at the top of your head and travel down slowly to your toes. Relax any places that feel tense
• Now, imagine the tensions, concerns, and anxieties of your day exiting from the top of your head and entering a balloon. When you’ve filled the balloon and your feeling calmer, seal the balloon and watch it float away
• Know that you are safe, and that your journal is private and just for you if that is your choice. Take your time and begin when ready

Prompts for journaling

These journaling prompts will guide you in writing your story, exploring yourself, and your life to gain insights. They will help you to learn more about yourself each time you journal.

Remember to date each entry and revisit the relaxation techniques before you begin.

1. This is what it feels like to be me today…

Reminder: Begin with the relaxation technique and date your entry.

Try to use as much detail as you can. Write about what’s on your mind, what emotions you are feeling, how you feel physically, etc.

Examples:

What it feels like to be me today is, frustrated. I’d feel fine if people would just stop telling me I’ve changed. I’m just me. Most of the time, I don’t know what they’re talking about. Why can’t they realize that I can’t be anyone else? It’s frustrating, and it makes me really angry. Get over it, man. – Jerome
What it feels like to be me today is hopeful. Everything lately has felt really hard, but today I went for a 10 minute walk and I didn’t get tired. That made me feel happy– Anne

2. I wish I could feel this way today instead…

Reminder: Begin with the relaxation technique and date your entry.

It’s sometimes possible to improve your mood and outlook when you write about how you would like to feel. Also, it sometimes helps provide you with a roadmap to get there. Try to include something you’re grateful for.

Examples:

I want to feel like everyone has accepted the new normal. I guess it just takes time. I’m grateful things aren’t worse. – Jerome

I want to feel like there’s been more progress. There has been. It’s small, but it’s there, and I’m grateful for at least that. – Anne

3. Here’s how my brain injury happened

Reminder: Begin with the relaxation technique and date your entry.

Your brain injury happened as a result of an event. Record as much as you can, in as much detail as you can, about the event as you remember it happening. Begin just before the event took place. Stick to facts; feelings will be covered in the next prompt.

Examples:

I remember standing at the top of the mountain. It was a beautiful day, and I was excited to ski with my daughters. The next thing I knew, I was laying in a hospital bed. I was told a few weeks had passed since I was at the top of the mountain. I’d had a bad ski accident. I had a long cut on my face that had mostly healed. My chest was sore – they said I’d fractured my sternum. My face looked different in the mirror. They said I’d fractured my occipital bone, so one eye was a little lower than the other. Plus, they told me I’d had two brain hemorrhages in the front of my brain. I felt fine. Maybe I had a little left-side weakness, but that didn’t last long. One day I found my way to the rehabilitation floor on my own. That shocked them. I could cook my own breakfast, too. I was told I’d been in the hospital for more than a month. My brother had been there for two weeks. I don’t remember any of that. Next, I was sent to a rehabilitation centre. I didn’t think that I needed it. I wanted to go home to be with my family.. — Brian

I was reading at home one night and started feeling pain behind my eyes. I thought maybe the lighting was too dim & it hurt my eyes. I got up to turn on lights. I remember thinking that the ache had been there for a couple of weeks, now it felt stabbing. It was weird, but I kept reading. About 15 minutes later, I had to run to the toilet. I vomited. My head was spinning, and I started seeing double. Thank goodness for my husband. He insisted we call the ambulance. The siren was so loud on the way. I kept holding on to my head so it wouldn’t explode. Charles kept his hand over my eyes. It was so warm. The air conditioning when we got in the hospital felt like such a relief. I remember feeling like I could breathe better. Turned out I had a brain aneurysm with a subarachnoid hemorrhage. I was rushed into surgery that saved my life. I got some neurological problems now, but I’m alive.
—Dorothy

4. List what you recall feeling during and/or after the event that resulted in your brain injury

Reminder: Begin with the relaxation technique and date your entry.

List what you recall feeling during and/or after the event that resulted in your brain injury. Use the following categories if they apply:

• Emotional
• Mental
• Physical

Physical feelings can be easy to identify and name. Emotions and mental states can be more complicated to identify and name. Here are a few examples of each:

Emotional:     Mad, sad, scared, afraid, peaceful, joyful, happy, overwhelmed, anxious, nervous, cheerful, hopeful, content, proud, optimistic, frustrated, calm, relaxed, curious.

Mental:      Foggy, confused, clear-headed, bewildered, disoriented, fuzzy, dizzy, coherent, alert, lucid, rational, levelheaded, well-oriented, balanced, clear-headed, numb.

Physical:    Tender, sensitive, bruised, achy, sore, tense, tight, nauseous, tingly, burning, prickly, twitchy, shivery, quesy, itchy, shaky, knotted, sweaty, cold, hot, numb.

An important step in telling your story is working to name what you felt and feel. This may come easily to you but if not, be patient with yourself. Give it time, and don’t linger if you find yourself getting distressed or frustrated: you may want to come back to this prompt later and add more.

Examples:

I can’t remember anything during the accident yet. The nurses say some of it might come back to me eventually.
Right now:

• Physical: Itchy (leg in a cast), sore (laying in bed). Lower back killing me.
• Mentally: Lost (can’t remember words a lot, sometimes I can’t sort out what day it is),
• Emotional: Frustrated and mad for not being more careful. Scared about getting better in my head.

— Andy

How I felt during the accident:

Physical: I totally tensed up and froze when the headlights were coming at me. Then I felt something burning but couldn’t identify what. I felt myself kinda floating. I think that was me passing out.

Emotional: It happened too fast, I think, to be emotional. I was just stunned.

Mentally: Brain-freeze.

Afterward (in the hospital):

Physical:    Dry-mouth, but I was on too many painkillers at first to feel anything.

Emotional:    Kind of a weird peacefulness. A limbo.

Mentally:    Dazed, semi-conscious most of the time.
— Mandy

5. List anything good or positive recall feeling during and/or after the event that resulted in your brain injury

Reminder: Begin with the relaxation technique and date your entry.

List anything good or positive in these categories that you recall feeling during and/or after the event that resulted in your brain injury.

Emotional:

Mentally :

Physical

EXAMPLE:
I was and am grateful just to still be alive. Isn’t that the best thing?  – Mandy

My friends have been here for me. – Andy

6. Lost and Found

Reminder: Begin with the relaxation technique and date your entry.

Consider what you’ve lost because of your brain injury and make a list. Write numbers 1-10 and fill in as many as you can.

1. My car
2. Bunch of words
3. My old personality
4. Memories
5. Balance (sometimes)
6. Independence (for now, I hope)
7. …
8. …
9. …
10. …

Now consider what you’ve gained or learned because of your brain injury and make a list. Write numbers 1-10 and fill in as many as you can.

1. The brains complicated
2. How much my wife loves me
3. What friends can handle this
4. Got humble
5. Better appreciation for my home
6. …
7. …
8. …

7. Dialogue: Have a conversation with your brain about what caused your injury

Reminder: Begin with the relaxation technique and date your entry.

Dialogue is a journaling technique that has been utilized by journaling experts such as Ira Progroff and Kathleen Adams. The technique is having a (written) dialogue with an issue, subject, emotion, or person, and you ‘play’ both parts.

The technique can feel awkward at first, like talking to yourself. But trust the process: use your imagination, and stick with it. It will become more comfortable as you practice.

Begin writing by asking a question. Use the word “what” rather than “why.” This way, you’re prompting yourself to provide an answer and thus begins the two-way written dialogue.  Keep the conversation going as long as you can.

EXAMPLE:

ME:  I’ve made that move a million times in my (hockey) career. What the hell happened?

CRASH: The circumstances were just right for your helmet to fly off and you to hit the boards in that way.

ME:  Could I have avoided it? Was it my fault?

CRASH:  No. It didn’t just involve you. Other players were part of the circumstance.

— Stan

8. Who are you now?

Reminder: Begin with the relaxation technique and date your entry.

Write out what you know for sure about yourself at that given moment. Are you tall or short? A parent or a sibling? Employed? In therapy? These are details that can help ground you in your journaling and your day.

EXAMPLE:

I’m still a woman, Mom, single, daughter. Hard to be a good friend right now. I’m a patient in rehab. I’m not sure of much more than that, but I’m working on it. Guess that means I’m determined.
— Beth

9. Who do you want to become?

Reminder: Begin with the relaxation technique and date your entry.

EXAMPLE:
I’m thinking this means goals, maybe. So, independent – employable – nice. That’s good for now.
—   Jamie

More suggested journaling prompts

• I will…
• I feel…
• I believe…
• I won’t…
• I can’t…
• I can…
• Yesterday was…
• I’m most worried about……
• My goal is…
• I always feel sad when…
• I always feel happy when…
• I have recovered from…
• I am getting better at…
• I can’t help thinking about…..
• It’s okay to keep thinking about…
• My family is driving me crazy because…
• My family takes good care of me by…
• I have recovered from…
• I believe in miracles because…
• I am grateful for…
• I am losing my temper because…
• I am tired of…
• I will be more positive because…
• When things don’t go my way, I will…
• A dream I had last night was…
• I wish I could explain…
• I understand that…
• In the future, I will…

“In my journal, I don’t just express myself more openly than I could to any person; I create myself.”
—    Susan Sontag

NOTE: Examples are based on some facts but are primarily fictional to protect people’s privacy. The names are fictional as well [1].

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Sometimes life does not turn out as we expected. Coping with all the changes that accompany living with the effects of brain injury can be overwhelming. If you find yourself, or someone you love, dealing with depression or anxiety, you are not alone. Nearly half of all people with brain injuries experience depression and anxiety at some point in their recovery journey [1].

Studies have shown that mindfulness meditation can help decrease depression symptoms and improve anxiety among people with brain injuries [2, 3].

When we are in pain – whether it is physical or emotional – our instinct might be to avoid or deny it’s happening. This is often done out of fear.  “The root of all fear is the fear of our strong emotions,” says Kaira Jewel Lingo, a long-time student of Thich Nhat Hahn, the Buddhist monk who initially brought mindfulness to the West. “If we lose the fear of any emotion, then we lose the added layers of suffering. All emotions are workable.” [4]

One way of working with emotions is through mindfulness practices. Informal mindfulness involves paying attention to the activity you’re doing and engaging all your senses to fully observe your experience in each moment.
For example: slowly eating a meal, paying full attention to each bite. This includes looking, smelling, tasting, even hearing the crunch of food – with no distractions like television or a smartphone.

Often the experience is more enjoyable because you can really take in the small moments that are often missed. Another example is eating a meal without talking. With less stimuli and when your attention is not being divided, the experience is more restful.

• Mindfulness Based Cognitive Therapy (MBCT) can help with depression 

How does mindfulness meditation work?

Mindfulness meditation is the practice of learning to sit with our experiences – including thoughts, emotions, and bodily sensations – to observe what we are feeling as it is happening. This is done with kindness, not through self-judgement or storytelling.

Although mindfulness meditation has its roots in Buddhism reaching back 2,500 years, Jon Kabat-Zinn, founder of the Mindfulness-Based Stress Reduction program [5] developed non-religious mindfulness meditation programs available in clinical settings to help patients.
 
Mindfulness practices can be particularly helpful after brain injury by learning to focus on the present moment by attending to one thing at a time. “For someone who has had a brain injury, it can come as a big relief to learn ways to cope with frustration, poor concentration, and memory issues. It is easier for the brain when we pay attention to one thing at a time to increase focus and concentration which is helpful for making and recalling memories,” says Melissa Felteau, who after struggling with her own brain injury recovery, adapted Mindfulness Based Cognitive Therapy for traumatic brain injury (MBCT-TBI) [6] and was a co-investigator on a number of research studies.  

“Practicing mindfulness meditation can also help with improving low mood and feelings of anxiety, that can lead to mood swings and angry outbursts. All of us feel badly when our emotions get the better of us,” said Felteau. Learning how to sit with difficult emotions and diffuse the level of reactivity can go a long way in befriending the mind. “I am not talking about denying or covering up real issues or pretending everything is fine when it is not. Rather, it is about turning towards the experience and learning to build capacity to develop a different relationship with difficult emotions,” said Felteau. “Learning to extend kindness and compassion to oneself in the face of hardship can be a transformative game changer to improving overall quality of life.” 

Benefits of mindfulness meditation 

The benefits of mindfulness meditation include:  

• Slowing down to observe the moment and appreciate the feelings and sensations that are present 
• Allowing an openness to embrace what is here, building resiliency for difficult moments  
• Learning how to receive see your thoughts and self with kindness, compassion, and non-judgment 
• Helping to step away from repetitive negative thinking 
• Addressing apathy and helping to cope with feelings of loss of self and isolation
• Recognizing warning signs of depression and actively taking steps to prevent decline [7]. 

The mind is always active – but you can still meditate

If you are thinking, “I can not meditate!  My mind is always active!”, you’re half right.  Minds are continually active: full of thoughts, feelings, observations, judgments, planning, daydreaming, analyzing, and a whole lot more. According to Felteau, “One myth worth busting is that learning to meditate will not “empty” the mind – you will still have a steady stream of thoughts, emotions, sensations – but you can learn how to have a different relationship to them to settle the mind, so it is not so anxious, sad, reactive, or all over the place.”

The practice of mindfulness meditation teaches us to sit with moment-to-moment awareness, returning from mind wandering time after time, while detaching from memories or worrying about the future.

It is easy to be hard on oneself when comparing to what was possible pre-injury. With mindfulness, you come back to just the moment. You let go of thoughts where comparisons are made. You try not to waste energy worrying about something in the future that may or may not happen. Instead, you try to develop the perspective that all thoughts and feelings are viewed as passing events in the mind [8].

Soon you will learn that all things – good, bad, or neutral – are flexible. Thoughts arise and pass away just like each breath. That’s why the first object of attention in meditation is the breath.  You will notice the same arising and passing away of emotions, sounds, and bodily sensations too.

Mindfulness meditation teaches that being with each moment is different, so you learn each moment brings another new experience, another fresh opportunity to begin anew.  “Practicing this form of acceptance and self-compassion invites us to soften our negative reactions and encourages tolerance for imperfection and failure much needed after a TBI,” [6]. 

The ‘Sitting Like a Mountain’ exercise

Practicing patience when thoughts come up, allowing them to pass like clouds moving across the sky, helps the mind to quiet naturally.

Using the image of sitting like a mountain is a classic meditation. Sitting solid, stable, and dignified as all forms of weather pass by including countless clouds, beating hot sun, rain showers, threatening thunderclouds, flashes of lightening, and snowstorms. These forms of weather all come and go but the mountain just sits, enduring it all – trusting in the knowledge that all weather phenomena arise and pass away. Just like life, all things come and go.

Two wings of a bird

Another traditional teaching sees mindfulness like two wings of a bird, with one wing being wisdom and the other wing being compassion. Without both wings, the bird cannot fly. The wisdom that comes with awareness of thought patterns is important to bring understanding, kindness, and compassion to the experience of meditation. Self-compassion is like the love and care one would extend to a small child but turning that nurturing on yourself. These moments of generosity and self-care are the heart and foundation of mindfulness.

Ways to practice

There are several ways to practice mindful meditation. The key is consistency in your practice, and not being afraid to change if something isn’t working for you.

Examples include:

• Finding a compassionate teacher in person or online to help answer questions and guide you 
• Schedule a time every day, often at the same time so it becomes a habit to meditate 
• Start with 3 minutes of breath practices like the 4 by 6 breath or the 3-7-8 breath to settle the mind
• When you can, do 3 minutes of mindfulness meditation without interruption. Next time try for 5 minutes. Then 10 minutes. Set a timer so your mind is not distracted by the clock. Work up to 20 minutes daily 
• If you’re having trouble sleeping, try doing a slow check-in with the different parts of your body while in bed to drift off to sleep 
• Use a free app like UCLA Mindful, or Healthy Minds Program from the University of Wisconsin Madison – both based on evidence-based research of MBSR/MBCT
• Start small and begin again if you lose your daily momentum

Practicing mindfulness may help you to cope with the changes and challenges that brain injury brings. Learning mindfulness is like learning to use a new muscle. The more you “flex the muscle” the more you strengthen the neural connections in the brain.

Learning to intentionally view difficulties and discomfort as passing events in the mind [9] like weather passing a solid, stable, and dignified mountain can bring stability. Offering yourself openness, kindness, compassion, and acceptance in a way that befriends the mind and builds a sense of wholeness can be helpful and offer a sense of hope.

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According to Dr. Elizabeth Gilbert, the Head of Research at PsychologyCompass, “decades of research” back up the benefits of journaling when it comes to reducing anxiety, easing depression, working through trauma, and setting goals. “If there are stressful things happening in your life, journaling trains you to stop, react, and make sense of it all,” Gilbert says. “Even just make a narrative about it. Tell it in a story in a way that makes sense.”

In life, overthinking an activity or task can lead to not doing it. This can be the case when you are thinking about starting a journal. It’s important to remember there are no rules in journaling – only suggestions based on what you’d like journaling to be for you. This means there is no wrong way to journal.

Many people are under the impression that journaling means having to write daily or often; then, they feel guilty when they don’t achieve this rhythm. The practise of keeping a journal is meant to be guilt-free. Journaling is journaling, no matter how often you want to do it – even if it’s once a year.

It’s also important to know that journaling isn’t just for when you’re feeling sad, depressed, or troubled; journaling is a way for you to express yourself and your feelings any time in your life journey. For example, you can use an entry in your journal to share what you’re happy about and express gratitude.

Getting started is as easy as picking up a pen (or opening an app, a voice recorder, or sitting down in front of your computer) and jotting down or speaking whatever thoughts happen to be in your mind at the moment.

There are therapeutic benefits to journaling, no matter how often you do it. The key is to get started!

Suggestions to help you begin

Here are some suggestions you can use if you’re interested in starting your own journaling process.

Select a journaling method

There are several ways to keep a journal. These include:

• Writing by hand in a notebook or journal,
• Typing on a computer or tablet
• Using an online journaling app for writing or voice recording. Use your phone or tablet to search for an app that is right for you. Please remember that some apps have free or freemium features and others require payment
• Using a tape recorder

Try to avoid expectations

Don’t set journaling goals that may end up being unrealistic. It’s important to give yourself time to understand journaling and find the right rhythm for you.

You also shouldn’t expect yourself to write in full sentences or even in a straight line. Use bullet points, make random notes all over the page, draw or doodle, and forget correct spelling and punctuation. None of those things are as important as the act of journaling.

Choose a time to journal

When you’re first beginning, it’s a good idea to journal first thing in the morning or  before you go to sleep. Things can come up during other times in the day that may keep you from journaling.

Even if you schedule a regular time to journal, stay flexible and forgiving. Life happens, and schedules and circumstances change. What matters is to journal when you have the time and when you need it.

Set a time frame that’s not overwhelming

Begin each journaling session with the goal of writing/talking for five minutes. It’s surprising how much you can write/speak in that amount of time. And if you want to continue past those first five minutes, you can. This helps ensure journaling never feels overwhelming.

What to journal

This is one of the biggest concerns for some beginners. Some ideas to get you started include:

• Thoughts that have been on your mind recently
• What you’ve been feeling lately – physically, emotionally, or mentally
• How you would like to feel – physically, emotionally, or mentally
• Things you can do to think and feel the way you want
• What it is that you need right now
• A decision you need to make
• Something you’d like to change and something you’d like to stay the same
• Your opinion on the weather, a favourite TV show, a movie you watched, a book you read, something you just experienced, current events, or a person you met or already know
• Good things and frustrating things that happened today
• Things for which you are grateful

You can also use more formal journaling prompts. They are excellent when you’re stuck for a topic but still want to journal.  We have a few journaling prompts you can use to help get you started. You can also find more journaling prompts on the internet or in books.

Journaling can be anything from a fun hobby to a form of meaningful therapy. But make sure you don’t get stuck in negativity or wallow continuously in problems or self-blame. It’s important to use journaling to release pent-up emotions and to rant, but eventually, you need to move forward, find solutions, and include the positives — and journaling will help you with that too.

Lastly, remember to be patient. Experiment with different types of journaling until you find what works for you.

For centuries, people have found journaling beneficial and cathartic. But only recently have the emotional, mental, and physical health benefits of journaling been proven through research studies.

This section will introduce journaling and how it may be helpful to those that have experienced brain injury.

Section includes:

• What is journaling?
• Journaling and trauma: Research into the benefits of journaling
• Why writing works
• Journaling and brain injury

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What is journaling?

Journaling is the act of freely expressing yourself in your own private notebook, audio recordings, or videos.
Your journal is a safe space where you can be 100% yourself; you can discover and make sense of yourself and your experiences. You can also use your journal as a tool to help with growth and personal strength.

To journal is to write about your life – it is telling your story. Life-based writing is one of the most reliable and effective ways to heal, change, and grow.

-Kathleen Adams, author of Journal to the Self and Founder/Directory of The Center for Journal Therapy

You don’t need to be a ‘writer,’ have perfect penmanship or punctuation, or know how to spell. If you have thoughts, you can journal. You simply need to be who you are in the moment.

There are no rules when it comes to journaling. It is suggested that you date (day, month, year) every entry—and depending on what you want to achieve, there can be important guidelines—but your journal is your personal creation. You are in control.

With its many forms (hand-written, voice-recorded, typed in computers, websites, apps, and visual art), journaling is accessible to everyone. Journaling has become more popular, in part due to extensive research being done on the benefits of the practice. A vast amount of information exists to help guide you in your journaling purposes or goals.

Ultimately, journaling is an exploration of self: a reflection of you, your life experiences, and the era in which you live. It’s a life tool that may contribute to your health, happiness, and give you more compassion towards yourself.

Journaling after trauma: Research on the therapeutic benefits

For several decades, an increasing number of studies have proven that when a person writes about emotional and traumatic experiences, they may experience significant physical, mental health and behavioural improvements as a result.

One of the first researchers to empirically prove the scientific benefits of journaling (expressive writing) is Dr. James Pennebaker, Ph.D., an American social psychologist and lead researcher on Expressive Writing at the University of Texas. He has authored many studies and publications, including the book, Writing to Heal: A Guided Journal for Recovering from Trauma and Emotional Upheaval [1]. He conducted his original work on expressive writing and trauma in 1986 [2].

More research findings here

In Pennebaker’s original research [2], he assigned healthy undergraduate students to one of four groups: three groups wrote about personally traumatic life events for 15 minutes for four nights in a row while the fourth group wrote about unimportant topics. The researchers tracked the participants’ visits to the university health center over the next six months. They found that writing about traumatic events was associated with fewer visits to the health center.

The study showed people’s health and productivity improved when they wrote about traumatic experiences or uncertainty—particularly if they constructed causal accounts or plans. Pennebaker found that translating our experiences into our own written language makes the experience more understandable. Pennebaker says, “Emotional upheavals touch every part of our lives. These things affect all aspects of who we are — our financial situation, our relationships with others, our views of ourselves and writing helps us focus and organize the experience.”

Since the initial experiment, the concept has been utilized in many studies of physical health and biological outcomes after journaling. Analyses of these studies confirmed the original finding: expressive writing is generally associated with better health.

A more recent study (presented in a conference paper and submitted for publication, Pennebaker, Keith Petrie, Ph.D., and others) at the University of Auckland in New Zealand found a similar pattern among HIV/AIDS patients. Patients who wrote about life experiences measured higher immune functioning than the control group. This suggested that journaling reduced their stress by releasing their illness-related anxiety. “By writing, you put some structure and organization to those anxious feelings,” he explains. “It helps you to get past them.”

Behavioural changes have also been researched as a result of journaling. Students who write about emotional topics have shown improvements in grades. Senior professionals laid off from jobs get new jobs more quickly. University staff members who write about emotional topics are subsequently less absent from their jobs. The article, Emotional and Physical Health Benefits of Expressive Writing [3] offers the following about outcomes of expressive writing:

Immediate and longer-term effects of expressive writing

The immediate impact of expressive writing is usually a short-term increase in distress, negative mood and physical symptoms… However, at longer-term follow-up, many studies have continued to find evidence of health benefits in terms of objectively assessed outcomes, self-reported physical health outcomes, and self-reported emotional health outcomes.

Long-term effects of expressive writing [4]

Health outcomes

• Fewer stress-related visits to the doctor
• Improved immune system functioning
• Reduced blood pressure
• Improved lung function
• Improved liver function
• Fewer days in the hospital
• Improved mood/affect
• A feeling of greater psychological well-being
• Reduced depressive symptoms before examinations
• Fewer post-traumatic intrusion and avoidance symptoms

Social and behavioural outcomes

• Reduced absenteeism from work
• Quicker re-employment after job loss
• Improved working memory
• Improved sporting performance
• Higher students’ grade point average
• Altered social and linguistic behaviour

Why does writing work?

Perhaps the main reasons for the benefits of journaling are simple: the value of using the written word to express oneself and the act and relief that comes from disclosure that is as honest as possible.
Another explanation is that the act of converting emotions and images into words changes the way you think and organize thoughts.

Journaling after brain injury – Telling your story

“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

One of the best ways to know and understand the events of our lives and their impact on us is by using a centuries-old, uniquely human and innate skill that we all have: storytelling.
In Forming a Story: The Health Benefits of Narrative by James W. Pennebaker and Janel D. Seagal [5], the authors state,

…constructing stories is a natural human process that helps individuals to understand their experiences and themselves. This process allows one to organize and remember events in a coherent fashion while integrating thoughts and feelings. In essence, this gives individuals a sense of predictability and control over their lives. Once an experience has structure and meaning, it would follow that the emotional effects of that experience are more manageable.

Following a brain injury, whether mild, traumatic, or non-traumatic, your life and world change. There is a great deal to make sense of. Pennebaker and Segal tell us that journaling in the form of storytelling can help: “Constructing stories facilitates a sense of resolution, which results in less rumination and eventually allows disturbing experiences to subside gradually from conscious thought.”

Barbara Stahura, a Certified Journal Facilitator, is the primary author of After Brain Injury: Telling Your Story [6], the first journaling book for people with brain injury. In this book, she offers the following.

As a person with brain injury, you have been hurt and traumatized by something most people haven’t experienced and can’t understand. (No matter how you suffered your brain injury or what type it is) 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 us revealing a new self to people, perhaps even your loved ones, who don’t realize or understand the change the injury caused you (changes you may not understand, either). Since every brain injury is as unique as who experienced it, you will face individual hurdles. However, no matter how many challenges your brain injury create for you, one thing is certain: You have a new story to tell.

In the book, Expressive Writing, Counseling and Healthcare [7], author Barbara Stahura writes, “For many people with brain injury, the old story is gone or greatly changed.” Journaling can be a tool that helps a person find their new normal post-injury and explore the next chapter.

In Brainlash, Maximize Your Recovery from Mild Brain Injury, author Gail L. Denton, Ph.D. [8], who suffered a brain injury in 1991, writes, “My journal… was my way to reach inside and pull out my Self so that I could look at her and begin to figure out the new her! This woman was experiencing and expressing thoughts and emotions that the old me did not easily recognize as being ME. I wanted to know what was going on. I wanted some understanding, if not control. Journaling was my way to make sense of my predicament.”

Journaling can become a therapeutic and helpful tool for recovery and daily living.

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Intimate partner violence (IPV) is physical, emotional, and verbal abuse by a significant other or intimate partner. IPV is a global public health issue, and it can happen to anyone.

According to the World Health Organization, one in three women will experience intimate partner violence in her lifetime. Most may also suffer one or more brain injuries as a result, since IPV often involves blows to the face, head, and neck.  Brain injury in IPV can also happen from a loss of oxygen to the brain caused by strangulation. Often times, these injuries result from repetitive episodes of IPV occurring over many months or years.

While there’s traditionally been a strong focus on sports-related concussion, brain injuries caused by intimate partner violence receive much less attention.

Statistics about intimate partner violence

• In Canada, every two and a half days, a woman or girl is killed violently, usually by a male partner or family member [1], and each night, more than 6,000 women and children find refuge from gender-based violence in shelters [2]
• 35-80% of women affected by IPV experience symptoms of traumatic brain injury [3]
• Up to 92% of IPV incidents involve hits to the head and face, and strangulation [4]
• Strangulation is one of the most dangerous forms of IPV, increasing the risk of death in following assaults [5]
• Some victims can die weeks after being strangled because of the underlying brain damage, even if there is no visible injury [6]

Statistical information about intimate partner violence (IPV) as collected and reported by the Government of Canada.

An invisible and underreported issue

Intimate partner violence (IPV) tends to happen behind closed doors, and there may not be signs obvious to people outside the household. Brain injury is often just as invisible, causing lifelong symptoms and challenges, but with no outward signs of disability. Clinicians may also not ask about intimate partner violence in their practice.

IPV is also extremely underreported. This happens for a variety of reasons, including:

• Shame and stigma associated with IPV;
• Fear of not being believed;
• Desire to keep the family together, and;
• A lack of recognition as to what constitutes abuse, causing victims to think it’s normal

Many women who have experienced a brain injury from IPV aren’t even aware that the challenges they face are related to a brain injury, which makes it much harder to receive a diagnosis or timely treatment. Also, research in Canada and elsewhere has shown that front line service providers lack knowledge and training/awareness about brain injury [7]. It’s a difficult, terrifying situation. Support from friends, family, and local resources can make all the difference, although in some cases, women may lack family support..

• Find help in your province/territory using resources listed on the Ending Violence Association of Canada’s website

Effects of intimate partner violence (IPV) and brain injury

Intimate partner violence (IPV) and brain injury can each cause significant, long-term challenges, but when someone experiences both, the effects may intensify, and become more complex.

IPV is linked to lasting psychological trauma. Emotional disturbances such as complex post-traumatic stress disorder (PTSD), anxiety, and depression are common.

Brain injury survivors can suffer some of the same issues, along with a range of cognitive, physical and behavioural changes.

Effects of brain injury can include:

• Difficulty communicating
• Memory problems
• Reduced judgement and problem-solving skills
• Shortened attention span and inability to concentrate
• Inability to initiate tasks or activities
• Headaches
• Fatigue

This is a small example of the kinds of effects people with brain injury can experience. And it can further be compounded by the cause of the brain injury (or injuries). In a study of female veterans, results found that women with persistent IPV-related TBI symptoms were nearly 6 times more likely to have probable PTSD compared those with no IPV-related TBI history [8].

Both brain injury and IPV can have an impact on activities of daily living (ADLs), parenting, and court appointments/proceedings. This can be discouraging and scary, particularly for women who are single parents or engaged in custody negotiations. The more survivors; family members and friends; health care workers; and other service providers (such as lawyers and social workers) understand the effects of brain injury, the more appropriate support can be provided.

Unfortunately, survivors of IPV and care providers commonly mistake brain injury symptoms for the emotional distress brought on by the abuse [9]. That’s why research and educational resources on brain injury and IPV are so important.

Increased risk of intimate partner violence (IPV) towards people with disabilities

Overall, women and men with disabilities have a higher risk of abuse, including from intimate partners.

According to Statistics Canada, “Canadians with a disability were more likely to be victimized in their own home, as close to 30% of violent incidents against a person with a disability occurred in their private residence.” [10]

The study dives deeper, indicating that 23% of women with a disability “experienced emotional, financial, physical or sexual violence or abuse committed by a current or former partner” in a 5-year period. This is 2 times higher than the rates of those without a disability. Women with disabilities were also more likely to experience physical violence leading to injury [11].

For individuals who have a disability (brain injury or otherwise), the increased risk of physical violence can lead to further or new injury. This could lead to an even higher risk of violence – and the cycle goes on.

This is yet another indicator that supports for women with brain injury and experiencing IPV are essential.

Assessment by a physician

If you, or someone you know, have been hit on the head, face, or neck, or have been choked or strangled, it is important to access medical care as soon as possible, and request that health care providers look for indications of brain injury. If you are not able to see a medical professional, speak to a social worker, support worker at a shelter or a brain injury support worker.

The earlier a brain injury is diagnosed, the earlier a treatment plan can be put in place. When you do meet with a doctor, it’s important to tell them if you have ever been struck on the head or neck.

Signs of a recent or more serious injury include:

• Loss of consciousness
• Neck pain
• Seizure
• Vision changes
• Weakness or feelings of tingling or burning in the arms or legs [12]

Additional signs of brain injury may include, but are not limited to:

• Balance problems
• Headaches
• Emotional lability
• Fatigue
• Memory issues
• Sleep disturbances
• Trouble speaking

Treatment of brain injury

Treatment for brain injury and its effects can be challenging not only because it is often misdiagnosed, but individuals who are in temporary shelters or transitional housing may not be able to access the supports and services they need for effective rehabilitation. Rehabilitation is a long-term process that involves regular appointments with various therapists and checkups with physicians.

• Information on rehabilitation after brain injury

It’s important for the person’s health and wellbeing that they access appropriate supports and services available to help them with their brain injury recovery. A good place to start is at your local brain injury association.

Support for survivors

• Shelter Safe – an online resource to help women and their children seeking safety from violence and abuse
• Women’s Shelters Canada – Shelters and Transition Houses United to End Violence Against Women
• Advocacy information about intimate partner violence and brain injury in Canada
• Facts about intimate partner violence from the Government of Canada’s Department of Justice
• SOAR’s HELPS Brain Injury Screening Tool
• SOAR’s Moving Ahead: Worker’s Guide to Brain Injury in Intimate Partner Violence
• SOAR’s Moving Ahead: Survivor’s Guide to Brain Injury in Intimate Partner Violence

Resources

• SOAR’s HELPS Brain Injury Screening Tool
• SOAR’s Moving Ahead: Worker’s Guide to Brain Injury in Intimate Partner Violence
• SOAR’s Moving Ahead: Survivor’s Guide to Brain Injury in Intimate Partner Violence
• Brain Injury 101: the ABI toolkit on brain injury caused by intimate partner violence
• Assessing Knowledge of Traumatic Brain Injury Among Intimate Partner Violence Service Providers
• Intimate partner violence and concussion/brain injury

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Many provinces and territories have reduced or removed many of the COVID-19 restrictions that were in place at the height of the pandemic in 2020-2021, thanks to the rollout of the COVID-19 vaccine. For many people, this means life gets back to some sort of normal: masks are optional, visits with family and friends are more frequent, and more social outings are possible.

But this isn’t the case for everyone. COVID-19 is still here, and many individuals with health concerns are still doing everything they can to keep themselves and their loved ones safe. But with many people living their daily lives as usual, it can be incredibly frustrating and exhausting to feel like you’re on your own.

You’ve probably heard a lot of people say they’re ‘so done’ with COVID-19. You might have even had this thought yourself. You are not alone. The feeling of being exhausted by COVID-19 and ‘done’ with everything related to COVID-19 is called COVID-19 fatigue.

If you are experiencing pandemic fatigue, the following tips may be helpful

Build enjoyable routines

Routines can help reduce stress and guesswork. If you already know what you’re going to be doing in the morning and evening, you don’t have to worry about planning/decision-making as you go.

There’s also something comforting about having a routine that is predictable during uncertain times. There’s not a lot we can control right now. Control over our household routines provide us with some stability.

Embrace your feelings in a safe space

You may find it overwhelming and frustrating trying to express yourself, especially if you feel that friends or family don’t respect or understand why you are still following safety precautions that are no longer in place in your community. You may also choose to try and suppress your emotions because facing them feels so challenging.

Find a safe space in your home where you can express your emotions freely and safely. This may mean writing them down, listening to a certain type of music, or even talking to yourself out loud. Here are a few other ways you can safely express challenging emotions.

If you want to share what you’re feeling with someone else to help them understand why you have rules around COVID-19, make sure to speak respectfully and keep your tone of voice as relaxed as possible. Some ways you can start the conversation include:

“COVID-19 is still a big risk for me, which is why I’m asking people to wear masks when they come into my home. I hope you’ll respect that this makes me feel safe and protects my health”

“If you’re open to it, I would like to share with you how I’m feeling and how the pandemic is continuing to affect me. I could really use some support”

Treat yourself with self-care activities

We all need some special treatment – that includes special treatment from ourselves. Self-care is doing something that is purely for your own health and well-being.

Here are some ideas to help you get started on your self-care journey.

Practice positive affirmations

In stressful times like a pandemic, it’s easy to get caught thinking negatively all the time. This can be particularly true if you are experiencing disruptions to your treatment/recovery, or if many of your friends and families no longer have to worry as much with fewer restrictions in place.

Try to disrupt that negative thinking by practicing positive affirmations. Look in a mirror and recite some positive things about yourself or your situation.

If you need some help getting started, here are some positive affirmations you can try.

Take care of yourself with exercise, healthy diet, and mindfulness

Exercising, eating nutritious foods, and paying attention to your mental health will make you feel your best. When you feel your best, you will feel more equipped to handle COVID-19 pandemic fatigue.

Talk to others

While you may not able to interact the same way you would pre-pandemic, that doesn’t mean you can’t find creative ways to stay in touch with your friends and families. There’s video calls, emails, texting, and phone calls.

You may find that there’s more pressure from friends and family to go out and meet in-person. You should only do what makes you feel comfortable when it comes to your health and safety. If you don’t feel safe meeting in public, then say no.

When you do talk to your friends or family members, don’t be afraid to talk about what you’ve been experiencing. Ask the other person whether they are in a position to listen to you talk about what’s on your mind when it comes to the easing of restrictions and your own comfort levels. If they say yes, let them know how you’re feeling. Make sure you respect the other person’s boundaries and needs as well as your own when you’re having these conversations.

Minimize your interactions with news and social media

While it’s important to stay informed about COVID-19, health and safety measures, and vaccination updates, it’s easy to get overwhelmed with all the information. It can also be upsetting to see posts about vacations or outings when you aren’t able to partake as readily. You may even become anxious about the health of others.

Choose a couple of reliable, reputable sources for COVID-19 information, and limit your news and social media time if it’s causing stress.

Ways to motivate yourself to keep following COVID-19 safety protocols

If you are experiencing COVID-19 fatigue and want to keep following your own health rules, here are some ways you can motivate yourself.

Take advantage of available protections

The COVID-19 vaccines, masks, protective plexiglass, and other personal protective equipment (PPE) can be incredibly useful in reducing risks associated with COVID-19. Just because masks and PPE are no longer required in most places doesn’t mean you should feel odd about using them. Your comfort and health is what’s most important, which means that if you want people to wear masks when visiting, you should share that (respectfully).

Focus on why you’re following safety measures

While the safety measures may now be self-directed, connect them to a key reason. Your health and the health of other high-risks individuals benefit from safety measures.

Set goals for after the pandemic that you can work towards now

As the pandemic continues to pass, there will be more opportunities to visit people, go on trips, or just spend time out in public. If you have something you want to do, once you feel safe to do so, start working towards it now. For example, if there’s a place you want to go, you can start saving money for it now during the pandemic.

COVID-19 has been with us for a long time now. While we can all do our best to follow the safety protocols in our area, much of the pandemic is outside of our control. A lack of control can be incredibly scary – particularly if you are in recovery.

How anxiety & fear of COVID-19 can impact you

The COVID-19 pandemic has generated a lot of fear and anxiety for people. Examples can include:

• Fear of getting sick
• Fear of being alone
• Fear of loved ones getting sick
• Fear of the virus impacting your brain injury
• Fear of the unknown

You could be experiencing one or more of these fears as a result of the pandemic – particularly as this has been a long-term and stressful situation.

Resilience is sometimes exhausting. I began noticing symptoms of anxiety and depression

This is an enormously intense situation, and it is normal to experience symptoms of anxiety and depression. You may notice some of the following symptoms:

• Changes in your mood
• Changes in your sleeping or eating patterns
• Difficulty concentrating on tasks
• Difficulty coping with stress
• Fatigue
• You get angry or impatient quickly

These symptoms are also common after brain injury, and can be made worse by stressful situations – such as a pandemic.

Coping with fear & anxiety related to COVID-19

Build a routine you can control

Building a routine that you can control can help ease your fears about the things you can’t control. It can provide a sense of calm. It’s as simple as making breakfast, or setting a time limit on the computer, or even a regular afternoon walk.

Find and follow the current COVID-19 safety recommendations

It has added a lot of anxiety to my life. It is stressful trying to remember all the rules

It’s challenging to keep up with the rules and regulations put in place, particularly as there are so many sources of information out there. It can add another layer of stress.

Your local health authority (or provincial government) regularly updates their safety guidelines, and they are the most reliable source for current information.

If you aren’t sure whether the information you are looking at is accurate, ask a friend or family member to confirm the information with you.

Identify and confront what causes you stress

While you can’t control the pandemic, you can identify and manage other sources of stress in your life. When you start feeling stressed or fearful, think about what you were doing before you experienced those feelings.

Were you doing the dishes? Reading something? Scrolling through social media? By remembering what caused you fear or stress, you can either make sure to avoid it in the future, ask for help, or (if it’s something that must be done), pick a different time of the day to do it.

It’s important to find constructive ways to manage stress that work for you.

Minimize your news and social media exposure

While it’s important to stay informed about what’s going on, it seems that everyone is talking about the pandemic. And that can be incredibly overwhelming, and makes it hard to focus on the positive.

By setting limits on your social media time and restricting how much you read the news, you can give yourself breaks from reading/hearing about COVID-19.

Practice positive affirmations

It’s easy to get stuck in a loop of negative thoughts, and it’s hard to get it out of it. One way you can take care of yourself is practicing positive affirmations.

Positivity takes practice and patience. Here are some articles that can help you get started.

• Positive thinking: Stop negative self-talk to reduce stress
• 11 Ways to Boost Positive Thinking

Reach out to your support people

Isolation is unfortunately a common occurrence after brain injury and during the pandemic. Even though it’s not possible to see people as we normally do, it’s important to stay as connected as possible.

This means reaching out regularly to friends, family members or caregivers through email, instant messaging, phone calls or video chats.

• More information about staying in touch with others