One of the most painful parts of living with a traumatic brain injury (TBI) isn’t always the injury itself.
Sometimes, it’s feeling invisible.
It’s hearing comments like:
“But you look fine.”
“You just need to get back to work.”
“Everyone gets tired.”
“It’s all in your head.”
For many brain injury survivors, these words can hurt as much as the injury itself.
In this heartfelt conversation, Carole Starr, author of To Root and To Rise: Accepting Brain Injury, joins Adeline to discuss what it really means to live with an invisible disability, trust your own experience, and slowly find your voice again.
📖 A Dream That Seemed Lost
Carole loved writing from the time she was a child.
Publishing a book was one of her lifelong dreams.
But after her brain injury, she believed that dream was gone forever.
She tried writing several times.
She started journals.
She scribbled notes on scraps of paper.
She stopped.
She started again.
Then stopped again.
For years, she questioned whether she would ever have anything meaningful to say.
It wasn’t until nearly two decades after her injury that she finally published To Root and To Rise.
Her story reminds us that healing doesn’t follow a schedule.
Sometimes our biggest dreams simply need more time.
🧠 From Survival to Wisdom
Carole explains that in the beginning, she wasn’t ready to help anyone else.
Like many survivors, she was simply trying to survive.
She was frightened.
Confused.
Overwhelmed.
She had lost her career, her hobbies, and the life she once knew.
Before she could teach others, she first had to learn how to live with her own brain injury.
Only after years of healing did she realize something profound:
She had gained wisdom worth sharing.
That wisdom became the foundation of her books.
💔 “But My Injury Was Mild…”
Adeline shares her own experience after being rear-ended in a car accident.
She wasn’t unconscious.
She wasn’t bleeding.
She didn’t require stitches.
She thought she was fine.
The next morning, everything changed.
She became dizzy.
She vomited.
She couldn’t drive safely.
She struggled with memory, confusion, and overwhelming fatigue.
Yet despite these very real symptoms, several medical professionals encouraged her to simply “get back to normal.”
This is a story that many brain injury survivors know all too well.
The word “mild” can describe how an injury appears – not how it feels to the person living with it.
As Carole points out, while many people recover fully from a so-called mild traumatic brain injury, others continue experiencing symptoms for months or even years.
Those survivors often fall through the cracks.
❤️ Learning to Trust Yourself Again
One of the most powerful themes in this conversation is learning to trust your own experience.
When doctors dismiss symptoms…
When friends don’t understand…
When family members tell you that you seem fine…
It becomes easy to question yourself.
Carole admits that one neurologist once told her:
“Get off your ass and get a job.”
Those words stayed with her for years.
She kept wondering:
“What if he’s right?”
So she pushed herself harder.
Again.
And again.
Each time, her symptoms worsened.
Eventually, she realized something important:
Her body was telling the truth.
And she needed to listen to it.
🌱 Finding Your Voice
Healing wasn’t only about improving memory or reducing symptoms.
It was also about rediscovering confidence.
Carole explains that finding her voice wasn’t a single breakthrough.
It happened gradually.
She joined a writing group with other brain injury survivors.
She practiced expressing herself.
She learned that her experiences mattered.
Eventually, she stopped needing other people’s permission to believe her own story.
That confidence changed everything.
🤝 Why the Right Support Matters
Not every support group feels supportive.
Carole remembers attending one group where everyone was crying.
She wasn’t emotionally ready for that environment and didn’t return for years.
Later, another therapist introduced her to a different group.
That experience changed her life.
Today, Carole facilitates that very support group herself.
Her philosophy is simple:
Yes, brain injury is difficult.
Yes, grief is real.
But people should leave with hope.
Every meeting focuses not only on challenges but also on practical strategies, shared wisdom, and encouragement.
Sometimes healing begins simply by hearing:
“You’re not alone.”
🌄 It’s Not the Mountain We Conquer
One chapter in Carole‘s book opens with a quote by Sir Edmund Hillary:
“It is not the mountain we conquer, but ourselves.”
That message deeply resonated with Adeline.
Recovery isn’t always about returning to who we were before.
It’s about becoming someone new.
Someone who learns new ways to dress, drive, remember, communicate, and navigate the world.
Someone who discovers strength they never imagined they possessed.
The mountain may never disappear.
But we become stronger as we climb it.
💛 The Comments That Hurt
Nearly every brain injury survivor has heard comments that unintentionally minimize their experience.
“You don’t look injured.”
“I forget things too.”
“I wish I could nap every afternoon.”
While these remarks are usually well-intentioned, they can feel incredibly isolating.
Carole explains that over time, the comments didn’t necessarily stop.
What changed was her confidence.
She no longer needed strangers to validate what she already knew.
She understood her own brain.
She trusted herself.
That inner confidence became stronger than other people’s opinions.
🌻 Progress Isn’t Always Perfect
Adeline shares a beautiful example of how healing can look.
After experiencing severe sound sensitivity for years, she recently noticed something different.
A loud noise startled her.
She screamed.
Then…
She laughed.
It was a small moment.
But it represented enormous progress.
Healing isn’t always measured by symptoms disappearing.
Sometimes it’s measured by how we respond differently than we once did.
Those small victories matter.
💬 We’d Love to Hear From You
Have you ever felt misunderstood because of an invisible disability?
What helped you begin trusting yourself again?
Share your experience in the comments. Your story may be exactly what another survivor needs to hear today.
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