Meet the Louise Hay of Brain Injury

An Interview with: Carole Starr author of To Root & To Rise: Accepting Brain Injury.

I’ll never forget the way I felt when I read You Can Heal Your Life by Louise Hay.  I was in my early 20’s and ready to find a new way of coping with the trauma of my past.  I don’t recall how I became aware of that particular book at that particular time, but it was life-changing for me.  Although it was just a few short decades ago, there was an undeniable paradigm shift that took place in my thinking which accompanied the realization that I didn’t have to be a victim anymore.  I started changing my internal dialogue and became empowered.  If you’ve ever read just the right book at just the right time then you’ll know what I mean.

Well, it just happened again as I read Carole Starr’s illuminating book To Root & To Rise: Accepting Brain Injury.  It was just the right message at just the right time and I was ready to learn again.  Reading this book was equally as transformative for me as You Can Heal Your Life which is why I dubbed Carole the Louise Hay of brain injury.  

So while the majority of interviews I conduct on this site are with authors who have written memoirs about their brain tumor and/or cancer experience, To Root & To Rise: Accepting Brain Injury is actually a self-help book described as “an inspiring, interactive book and workbook to help brain injury survivors and caregivers navigate grief and loss, find their strengths and move forward with a changed life.”

Here’s the thing, I’m not sure many brain tumor patients and caregivers realize that undergoing a craniotomy can cause traumatic brain injury (TBI).  I mean I feel ridiculous writing that because it seems obvious now, but I don’t recall it even being discussed as a possible outcome.  I literally thought I could have the craniotomy, heal from the surgery, and go back to being the person I was.  I had no idea I was dealing with TBI as I was relearning how to walk, talk, and drive again. 

Carole sustained her TBI in a car accident in 1999.  In her book, Carole reflects upon the loss of the two activities that brought great joy to her life prior to the accident (teaching and music).  After the accident, her life was forever changed by her TBI.  Accustomed to succeeding at most everything she did, she wrote “I think we all have identities that we especially cherish, that define who we are. For me, one of those identities was ‘brain’. Above all else, I defined myself by my sharp intellect, quick wit and ability to achieve.” 

After she learned to accept her TBI,  Carole eventually ended up creating a new life and discovering her passion.  In her book, she takes readers through the process and strategies she used to move from the “old Carole” (who she was prior to the accident and TBI) to the “new Carole” (who she became post-accident through acceptance of her TBI).  She shares inspiring messages of hope, strength, and peace as she helps TBI survivors to realize that we can find happiness and resolve in “life after brain injury.” 

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“I’ve gone from being uprooted by brain injury, to putting down new roots, to rising into this changed life and finding a way to soar. My life is very different than I ever thought it would be, but it is again filled with meaning, purpose, and joy.”  -Carole Starr

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Wendy:  Welcome Carole.  First off, I would like to thank you for the care and thought you put into the structure of your book.  You said you made “the design decisions to make the book as readable as possible for brain injury survivors.”  Can you please speak to that? 

Carole:  Thank you for including me in your blog.  It’s an honor.  And thank you for asking about the structure of my book, which is an important piece.  Many brain injury survivors, myself included, find that reading is no longer easy or enjoyable.  Small print, too many words on the page, and lack of white space can overwhelm the brain.  So I designed my book with larger print, shorter paragraphs and extra white space, to make it as easy to read as possible.  It’s also available in multiple formats (print, ebook, audio) so it’s accessible to a wide range of readers.  

Wendy: What has been most challenging about your brain injury journey?

Carole: Acceptance of my new self and coming to terms with the fact that I will live with brain injury symptoms for the rest of my days.  For years, I fought against the reality that the “old Carole” died on July 6th, 1999, that I was not going to return to my previous life.  I hated the “new Carole” and didn’t think I could ever like myself again or live a meaningful, purposeful life.  I thought that accepting my brain injury meant I was giving up and waving the white flag on my life.  But it turned out that coming to acceptance opened the door to creating this new life, one that honors the new person I am, a person that I do once again like.

“I thought that accepting my brain injury meant I was giving up and waving the white flag on my life.  But it turned out that coming to acceptance opened the door to creating this new life, one that honors the new person I am, a person that I do once again like.”

Wendy:  You mentioned at the beginning of your book that even though you survived the car accident, you had lost your sense of self.  How did you deal with the grief and loss that you were suddenly faced with?

Carole: After brain injury, many of us feel like strangers to ourselves, unrecognizable.  The grief over losing my sense of self was worse than any grief I’d ever experienced.  There were times when I thought it was going to break me.  Working through it was a gradual process that took years and a lot of tears.  I think it’s important to honor that we need time to grieve, to allow ourselves that space.  

I also needed help from many people, including family, friends, professionals, and other brain injury survivors.  I like to say that brain injury is a team sport.  I want to stress the importance of connecting with other brain injury survivors, who understand the grief as no one else can.  There is nothing like talking to someone else who “gets it”.

“I like to say that brain injury is a team sport.”

The more I tried to go back to my old life and failed, the more intensely I felt the grief.  A turning point was focusing on activities I could do as the new me, however small, and moving forward from there.  Experiencing success helped to rebuild my self-esteem.  My motto became “Start Small, Find Success and Build on it”.  

“Experiencing success helped to rebuild my self-esteem.  My motto became ‘Start Small, Find Success and Build on it’.”  

Wendy:   How did denial impact your journey?  And, what is the difference between psychological denial and organic denial?

Carole: I lived in denial for about five years.  Every activity I did, every treatment/therapy I tried, was about getting my old life back.  When I couldn’t live up to the old Carole’s standards, I blamed myself for not trying hard enough, when in reality, what I was attempting was too much for my brain.  The denial made me resistant to using strategies, which every brain injury survivor needs.  I wanted to do things the way I had always done them.  It was hard for my therapists to convince me that I needed to do things differently.

There are two kinds of denial that brain injury survivors cope with–psychological and organic denial.  With psychological denial, on some level, we know the truth–brain injury has changed us forever–but we push it away.  Psychological denial is a coping mechanism for a reality that is, at the time, unbearable.  Organic denial is unique to brain-related trauma.  The brain injury itself makes us unable to see the truth.

Wendy:  You talk about “trading negative language for positive language.” Why is it so important to think about the words we use?

Carole: Like many brain injury survivors, the words I’ve used to describe myself have been pretty harsh.  In the early years after my injury, I called myself,  “damaged goods”, “stupid” and “useless”.  None of those words were accurate or fair.  They’re words that increased my stress and feelings of shame.  

I’ve learned that the words we use matter a lot.  Negative words, like those above, repeated over and over, can disrupt brain chemistry.  The brain interprets negative self-talk as an actual, real-life threat.  Over time, this can damage the brain’s memory and emotion centers.

When the negative words threaten to overwhelm us, it’s helpful to replace them with positive words.  Three of mine were trust, patience, and joy.  They were inscribed on three stones that I kept visible on my desk.  They reminded me to trust the process, be patient with myself and focus on what brings me joy. 

“When the negative words threaten to overwhelm us, it’s helpful to replace them with positive words.  Three of mine were trust, patience, and joy.”

Wendy:  In Chapter Five, you talk about rewriting the script in your head (which was when I started to think of you as the Louise Hay of brain injury).  You wrote, “I remembered that a few months previously, I’d written a series of statements. They were beliefs that the old Carole had lived her life by.”  The list included self-talk like “I always have high expectations of myself, perfection is my standard,  be busy all the time, push harder when faced with adversity, my achievements are what make me worthwhile as a person…” You continued, “in a sudden moment of insight, I realized that since brain injury had made me a new person, I could write new statements.” What did you call those statements and how did creating them help you?

Carole: One of the scariest parts of my brain injury acceptance journey was as I was moving out of denial.  I knew I wasn’t going to get my old life back, but I couldn’t yet see how I was going to live this new life with a disability.  The past was over and the future was unclear.  I was lost in the middle.   

During this time, I wrote a series of “Who Am I Now?” statements.  They were statements that described what I knew about myself right then, as I was.  They reflected what I had learned in my brain injury journey so far and what I was working on becoming.  Since I was working on being less harsh with my new self, I tried to make the statements non-judgmental.  I was trying to be more positive about my situation, so I avoided negative language.  The statements represented the work-in-progress that I was, my temporary sense of self.

Here are a few of those “Who Am I Now?” statements:  I honor my mental fatigue and structure my activities accordingly.  I forgive myself when I cannot meet my own expectations.  I am still a worthwhile person.  Simple is good.  I focus on the present.  The past is over and the future will take care of itself.

These statements filled the gap between my old self that was destroyed by brain injury and my new self that would emerge as I reached full acceptance.  They helped me to stay focused on the present whenever I started to mourn the past or worry about the future.  They helped me to get through that scary middle time.

Wendy:  Acceptance is hard. You wrote about the time it took to acknowledge your limitations (which was another thing I could very much relate to).  How did you learn to accept your brain injury limitations and work with them instead of fighting against them?

Carole: It hasn’t been easy.  My whole book is about coming to terms with the limitations that brain injury puts on our lives.  I wish I could share one key strategy and poof, acceptance!   Unfortunately, it doesn’t seem to work that way.  It is a process, one that involves work, such as overcoming denial, processing grief, using strategies, building a new life, choosing to laugh, finding silver linings, and expressing gratitude. 

“[Acceptance].. is a process, one that involves work, such as overcoming denial, processing grief, using strategies, building a new life, choosing to laugh, finding silver linings, and expressing gratitude.”

I think that living with brain injury limitations is a dance between learning what to accept and what to fight, when to push, and when not to push.  It’s an ongoing challenge.  I’ve had to accept that I will always live with brain injury symptoms.  However, I will never stop fighting to make progress.  I continue to make small gains even nearly 22 years post-injury. These gains won’t get me back to my old life, but they do make a difference in my new life, which means a lot.

“I’ve had to accept that I will always live with brain injury symptoms.  However, I will never stop fighting to make progress.”

Wendy:  One of the most challenging things for TBI survivors to deal with is feeling misunderstood due to it being an invisible injury.  As you said, “unless they’ve lived it, the life-shattering impact of brain injury symptoms and subsequent loss of self are next to impossible for people to understand.” One of the ways you address this is by describing brain injury fatigue vs. normal fatigue. What are some of the things that make brain injury fatigue different from normal fatigue?

Carole: Neuro-fatigue continues to be one of my most challenging brain injury symptoms.  Even after nearly 22 years, I still have to lie down and rest every day for several hours.  When the brain is injured, tasks that were simple before, like thinking, talking, filtering out light and sound, and managing emotions are now difficult.  They require a tremendous amount of mental energy.  The injured brain runs out of steam, necessitating frequent, long-lasting rest periods.  When I get brain tired, my brain gives me two choices–lie down or fall down.  If I try to push through it, it gets worse and I end up on the couch for days.

Brain injury fatigue doesn’t tend to respond to the fixes that work for normal fatigue, such as a brief nap, a cup of coffee, or a quick walk around the block.  

“When the brain is injured, tasks that were simple before, like thinking, talking, filtering out light and sound, and managing emotions are now difficult.”

Wendy: You said, “One of the unexpected gifts of my brain injury has been the opportunity to learn to be kinder to myself.”  What were some of the other unexpected gifts? 

Carole: Brain injury has been the worst thing that ever happened to me.  Yet even within all the losses, there have been gifts.  

Because of brain injury, I understand more what it is to struggle and I’m a better person for it, with more empathy, compassion, perception, and wisdom.  

Because of brain injury, I’ve become less of a perfectionist.  I often joke that brain injury changed me from a Type A person to a Type A-minus person.  I’m still goal-driven, but softer around the edges.  I’m more relaxed, more patient, more forgiving of my own and other’s mistakes.

Because of brain injury,  I have a clearer sense of purpose in my life.  Brain injury gave me the passion for a cause that my previous life lacked. 

None of those gifts erase the many challenges of brain injury, but they do help me to not stay stuck in all its awfulness.  Finding the positive within the negative is part of the acceptance journey.  

“Because of brain injury, I understand more what it is to struggle and I’m a better person for it, with more empathy, compassion, perception, and wisdom.”  

Wendy: When I first learned about my brain tumor, I held a contest with my friends and family to name the tumor.  I thought I was so clever.  Then when I started joining brain tumor support groups, I realized many brain tumor patients name their tumor(s) and I wasn’t so unique after all.  This leads me to chapter 12 in your book where you talk about “The Power of Humor.” I enjoyed reading that you began your humor journey by naming your brain injury. What was the name you gave your brain injury and why? 

Carole:  I call my brain injury Brainhilda.  So often it’s felt like I have two people living inside–me and my brain injury.  And my brain injury, she’s kind of a diva.  She’s the one in charge and she gets what she wants when she wants it! For example, when she says rest, I must obey, no matter what I’m doing or where I am.  So, I wanted to give my brain injury a name that conveyed the drama it brings to my life.  My family, friends, and medical team are all well-acquainted with Brainhilda and her antics.  

Naming my injury was a way of separating myself from it, to know that I am not my brain injury.  It also opens the door to finding bits of humor within my situation, which is a key part of being resilient.  I find that when I can laugh about my symptoms, I feel less of a divide between myself and others.

Wendy:  What can you tell us about Brain Injury Voices?

Carole: Brain Injury Voices is a Maine-based volunteer group of traumatic brain injury, stroke, and brain tumor survivors that my mentor and I founded in 2010.  We grew out of a brain injury support group.  Our motto is “Paying it Forward”.  We educate medical professionals and the general public about brain injury from the survivor’s point of view, advocate for the importance of brain injury rehabilitation, and support other survivors through peer mentoring.  

I’m enormously proud of what we’ve accomplished as a group in the last 11 years–22,000+ hours volunteered, 2100+ peer mentoring sessions, 200+ presentations, workshops, and keynotes, plus one national volunteer award from the American Hospital Association.  

We’ve made a difference here in the Maine brain injury community and would love to be a resource for other Voices-type groups in other states.

Wendy:  What are the top one or two things you would most like to see people glean from your book?  

Carole: The two words that come to mind are hope and strategies.  

Hope:  Brain injury makes us feel lost within ourselves.  When survivors read my book, I’d like them to feel hopeful, to see that there can be a path forward, that life with a brain injury is not ruined, that happiness, meaning, and purpose are still possible, even though life is different than it was before.  

Strategies:  In order for hope to work, you need a plan.  That’s why my book is filled with the strategies that helped me come to acceptance and build a new life after brain injury.  These are strategies that I think can help others too.

Wendy:  Is there anything else you would like to share today?  What final piece of advice would you like to leave us with?

Carole:  Believe in the power of small steps over time. Where you are today is not where you’ll be one year, five years, or ten years from now.  Today’s challenges can turn into tomorrow’s successes.  Believe that you will continue to grow, change and move forward.  

May you root and rise!