Turning wounds into wisdom after brain injury
How do you turn wounds into wisdom after brain injury? And what's it got to do with a knotted piece of string?
Follow Krysalis blogger Anne Ricketts as she starts to unravel more brain injury mysteries in her new series offering lived experience insights to other survivors:
2022 and A New Heart and Dreams - Part 1: Wounds into Wisdom
Living with a brain injury is tough. From the inside, it feels as though who you are has been compromised in unimaginable ways.
I know, just like you, how hard living in the everyday world and managing daily life after a brain injury can be.
I don't know where you are on your journey or what your challenges have been, but I know, from speaking to countless thousands of people over the years, that many of us have similar experiences and challenges.
Unique injuries, personalities, wiring, physiology, beliefs and thoughts all fall to the wayside as ultimately and eventually we recognise that we walk the same path, kicking up the same dust.
We create a strong community based on absolute trust.
We need to expand this trust and community to include the people trying to help us – especially the professionals.
Over time we become experts in the experience of brain injury – we have much to add!
As the new year is getting underway, I am reflecting on the old one and the things I realised in 2021 about living rather than simply managing.
I have spent the last 21 years rebuilding my brain to manage my daily living and make life easier for me and those close to me.
When we finally see the experience from a perspective free of the perpetual need to pause, think, breathe, get back up, and keep going every single second of every day without letting up, without relent, we can see that yes, there are many compromises.
But there are also many achievements and successes that defy what we would think is possible for any human to endure.
So many 'little' things still take an enormous amount of focus and energy for me to get through a day but, every year, it gets better.
Never in my wildest dreams would I ever have believed that, as a result of such a horrific injury, I would not only find 'me' again but a much wiser and self-aware one.
My ultimate goal was always to be 'me' again.
Unable, even now, to consciously navigate my way to this dream of being 'me' again, I believe the desire came instinctively from somewhere deep inside of me.
Perhaps you feel the same way, and you also find it confusing when people want you to focus on rebuilding competencies you had before - when all that matters to you is feeling whole again.
I can tell you, with complete confidence, one of the reasons you are struggling: your brain still remembers all the skills you had and 'ways of being' you knew before it was injured.
And that's because they were automatic – they were habits.
Acceptance is the key to change and re-growth.
Throughout life, habits are ingrained into our wiring and are essential to helping us feel like the individuals we are.
Habits create a recognisable and predictable inner flow and outer behaviour. They also make us efficient, which is part of our survival mechanisms.
In your thoughts and mind, habits translate to being unable to 'see' your challenges or what other people notice and observe has changed in you because part of your brain still thinks it works just as it did before.
We become what we are meant to be through 'choices' made during our lifetime. Brain injury changes this flow.
Brain injury and changes in the way information can flow through the brain make us 'blind' to why we struggle with 'normal.'
Twenty-one years later, I think this 'normal' is still there – it is about getting it to work again!
A considerable part of you still believes that you are doing the same things in the same way, which creates unconscious objection, confusion, and fear.
Are the people around me, my loved ones, friends and professional helpers, trying to make me do things that I would never have done before, in ways that I would never have done them? Will this change me; will it change who I am?
Another thing I can do with complete confidence is to answer this question for you. No!
Professionals teach coping skills and compensatory techniques based on how you learn from scratch, which is one of the most important realisations we can make.
No one is going to tell you who you are or how to get that back – currently, this work is generally left to your own devices, however long it takes.
However, rebuilding our skill sets must come first because this frees up space in the brain for personal inner work.
It takes time. We can't pick up where we left off. But there are stages of learning that help us feel that we have eventually come home. We start feeling, once more, like who we are.
For example, we can't automatically hold a weekly plan or schedule in our heads or understand how we 'visualised' time coming and utilise technology or paper-based tools the way we did before.
Why? Because your brain needs to refill the reason.
Your brain needs to understand the 'why?' It needs to find out what is comfortable for you all over again. Your brain is your guardian – it wants for you what you want.
Be open and willing to start from scratch!
Imagine a piece of string with knots all along its' length. Each knot denotes something that you learned in a way that suits you – a way that only your unique wiring and needs can create.
If you start at the last knot you made, you no longer have a clue what all the previous knots meant or why they are there.
You have to start back at the beginning so that your poorly brain can put the same knots back in the same places as it did before in your life pre-brain injury.
Re-knotting your string is what your neurological specialists are helping you to do.
Back in the habit
Your pre-school brain learned mainly through trial and error, but this takes time.
In your formative years, your young brain and psychology were 'pre-set' with abilities to gradually add building blocks of learning.
Without a developed sense of self, this was just fine!
With a developed sense of self, however, learning this way doesn't seem 'right,' but it is where we need to start.
One of the first steps I had to take was shifting my understanding and attitude.
The previous, habitual self - now unconsciously remembered - became the blind driver forcing me from one moment to the next.
It took time to realise my broken brain wasn't who I was or had become.
Habits were a tool my mind had seamlessly used before the injury, and the links to that tool had broken.
Fundamentally, I needed the habits back. To repair that 'tool,' however, takes enormous commitment and effort.
You don't know me, but you probably recognise what I have been through.
I know if I could have seen what I see now, I would have knuckled down and gone with the flow.
But I didn't do that because my broken wiring caused me to be so confused that I could never see the wheat for the chaff.
I think I can tell the story well enough now. Experience helps us to turn our wounds into wisdom.
Part 2 of Anne's blog, ‘2022 and A New Heart and Dreams' is now available here.
Anne is the founder of Global Brain Injury Awareness (GBIA), a not-for-profit community interest company she launched after sustaining a traumatic brain injury (TBI) in July 2000.
GBIA aims to inform and support people in need after brain injury. Find out more here: GBIA.
Further reading
Read more about Anne's lived experience of TBI and her inspirational tips on managing daily life with a brain injury here:
How neuro occupational therapy transformed me four years after a brain injury
Re-claiming life after brain injury
Nutrition and diet after brain injury
Covid-19, brain injury and me: Diaries of an ABI survivor – Part One