Covid-19, brain injury and me: diary of an ABI survivor – Part 10

Covid-19 notes from a small English island

 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 10 – Still me! Different me!

If you missed the start of this fascinating series you can catch up with part one and onwards here.

I had a breakthrough today! The rapid changes caused by Covid-19 have uncovered social thinking that simply hasn’t occurred to me since my brain injury.

Imagine it this way: inside your brain, there are millions of neural networks which create a map. (Think of these as bus routes.)

Because precisely the same route is used all the time, everyone is familiar with the pattern.

We know where to start and where to finish and everywhere we go in-between.

We know what to expect and have a strong understanding of predictability, not only in ourselves but in others.

Familiar thinking is much like this; we don’t need to think about how we get there because we arrive without conscious thought of the route.

   Most of the things that we do are unconscious – the brain is superb at following habitual paths!   

We only notice how good it is when we want to change - and then we find out how tough it is.

This is because of ingrained automatic thinking.

Re-routed

During times of change, such as now amid Covid-19, it can be challenging to modify our thinking and understanding.

But because everyone is currently learning more about their ability to adjust, be flexible and altruistic, this is also a good time to appreciate more about what living with a brain injury means.

   For people like me, making adjustments to compensate for the changes in our inner world is perpetual.   

And it is an inordinately slow process because those regular routes no longer work the same – but they want to.

So, back to that bus travelling, say, from Waterloo Station to Bermondsey

Imagine it now has a new driver, and many of the roads have been dug up, or there are new one-way systems in place.

Additionally, the new driver hasn’t been given orienteering training or a map and so it might take him a while to work out how which way to go.

Living with a brain injury is similar to this—everything about life changes with the drop of a hat.

People commonly end up homeless or in the justice system because of behavioural changes.

Many don’t have any medical help beyond that which is life-saving.

Mapping the way

If I think of the ‘original’ me as being the bus driver who knew his way around the route.

The ‘injured me’ is a passenger on the bus of the new driver who has no map.

He has no idea that he should be following a set route and ends up driving in every direction without any sense of the chaos he is creating around him.

   My neural networks do this. They try and they want to help, but the director who once ran the transport system has gone AWOL!   

Neural plasticity tells me I can rebuild new networks and pathways. What is lacking are the kinds of repeated everyday challenges that would enable the original driver to be re-established!

Life is too complex, and so are we. How do you reform a pattern of neural networks to cope with that?

I realise my original brain wiring is gone; that ‘perfect for me’ mapping that happened in foetal development can’t be replaced.

All I can do is try to learn how to manage my life the best I can without the original wiring that managed my executive functions.

Even with countless missing pieces, however, I get that ‘we’re all in this together’ and I trust and hope that you’re adjusting too.

Further reading

What the experts say - stress and anxiety advice for brain injury survivors during the Covid-19 pandemic. Turn off the news, engage with nature, practice mindfulness, stick to a routine and suss your stressors ...

More resources to help brain injury survivors and their families during Covid-19 here: Krysalis public resources

Over 200 stay at home activities for brain injury survivors and their families ...

Twenty apps to boost brain injury rehabilitation ...

Covid-19 Brain injury and me - Diary of an ABI survivor ...

And so much more on our exclusive talking heads blog ...