Covid-19, brain injury and me: diary of an ABI survivor - Part three
Covid-19 notes from a small English island: coping alone with brain injury during the coronavirus pandemic.
How do you cope through Covid-19 when you’re alone on a small English island, living life with a brain injury?
It is uncertain times for brain injury survivor, Anne Ricketts as each new day dawns in the coronavirus pandemic.
But the Krysalis team are in close contact with her – and her loveable Labrador, Summer – as she reports on her progress from her island home via her new ‘live’ blog series, here.
Part 3 – Portals in a brainstorm
In many ways, the instruction to stay at home to help stop the spread of Covid-19 has been a blessing to me.
It brings a familiar comfort and feelings of being in a ‘safe haven’ where I won’t inadvertently get myself into trouble by doing or saying the wrong thing.
I also feel less pressure because I only have myself and my dog, Summer to care for - and she always lets me know if I have forgotten anything to do with her care.
For example, she sits on the doormat by the front door when it is time to go out, or pokes her nose at the lid of her food bin, giving it a good rattle, when it is mealtime!
Fortunately, Summer has learned the cues I need to react, as some of the changes caused by my traumatic brain injury (TBI) had a massive impact on my ability to hang on to the periphery of everyday life.
For many years, I felt I was hanging on to the outside world by my fingernails; I had no idea who I was. My reptilian brain took over and I became like a blindfolded passenger in my own life.
Indeed, for the first six-and-a-half years, my behaviours, exacerbated by my brain injury, swung at full force from one end of the widest spectrum possible to the other.
I wasn’t me, and much of what made ‘me’ is still missing.
It took me a long time to work out that the isolation I found myself in - due to rejection and abandonment by other people following my TBI - was the safest place for me to be.
It allowed me the time and space to try to comprehend what had broken in my brain and develop ways to try to fix myself.
Isolating myself also reduced the number of times I inadvertently upset the people I love.
I know that there are millions of others across the world who are used to isolation and now find themselves living through similar Covid-19 experiences.
I am frightened to my core for all those following behind me, who haven’t recovered the ability to the vague degree that I have, and are living alone.
Sometimes I wonder, given my unstitched thoughts, whether I would be even more protected if my internet connection went down?
If I closed down all communication outlets while my mind struggles to convert multiple forms of ‘new’ incoming information into understanding, perhaps I would feel less vulnerable.
The thing is, if I can do or say anything that will help just one other person get through this global crisis, then it is worth the risk of looking stupid.
I’ve survived this long because other people living with brain injury understand - despite others politely ignoring me. So I need to keep communication channels open.
I’ve maintained this stance for the last ten years since I started reaching out to help others, so why change now?
Adding to complexities currently are the almost minute-by-minute add-ons of information and instruction surrounding Covid-19.
Everyday reality is changing for everyone at a rapid pace, and I think most of us are struggling in one way or another.
I am desperately trying to process and understand the changes with a semblance of accuracy that would at least help me feel more confident.
The problems come when I think I ‘get it’ and I don’t!
In my brain, it feels as though billions of neurons are firing at the same time, not to connect with each other but, rather, as distress beacons screaming at me that the systems are overloaded.
My memory feels ravaged; the turbulence is almost unbearable.
A week ago, I telephoned my daughter and told her I felt as though there were a thousand dots in my mind, each one of them representing a separate option.
I couldn’t join the dots together for love nor money and felt so fractured that I couldn’t think or make a decision.
I have no recollection of the problem nor of her suggested solution, or anything else that happened that day.
In one way or another, I believe every one of us is finding it difficult to adapt. We have an unusual commonality in our struggle to become accustomed to the changes.
My brain has been struggling with an awareness of the passage of time because of the overload caused by the Covid-19 changes.
One moment has melted into the next, just like when snow falls and creates hidden layers on a mountain, moments of my life have melded into each other.
I lost an entire day, which isn’t at all unusual for me, and I didn’t know until I heard someone on the news say it was Thursday. I thought, ‘What a twit! It’s Wednesday.’
Eventually, I considered that it was more likely to be me who made a mistake, and, when I checked, it was!
The greatest blessing to me in all of this mayhem, however, is that I do now understand the Covid-19 safety instruction: stay at home to protect our NHS and save lives.
Part four in this fascinating series is available here
Anne Ricketts is the founder of Global Brain Injury Awareness (GBIA); a not-for-profit community interest company she launched after sustaining a traumatic brain injury in July 2000. GBIA aims to inform and support people in need after brain injury. More here: https://www.globalbia.org/
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