Covid-19, brain injury and me: diary of an ABI survivor - Part 8.
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 8 - The joy of talking and seeing
No one escapes from brain injury lightly. The symptoms can be debilitating for many years and invariably increase and decrease depending on what else life is throwing at us.
My executive function is up and down like a yo-yo at the moment, and I know it is because the pandemic is causing me to think outside of my standard box.
Two days ago, I was buzzing through my incoming messages, calls and emails, and relishing in the fact that I was thriving well enough to be on the ball.
There are so many ways people can talk via video that it is all beyond me. I don't know what is hip, most popular or 'in' at the moment.
I don't know what is best to use for different scenarios, such as group chats or conferencing, or which method provides the best picture.
Neither do I know which system is the safest or what works on what platform.
It must have been this time last year when my friend Colleen was over from Vancouver Island - and we found out that we needed to be able to connect via mobile phone rather than social media.
I can't even remember what we did before using social media - maybe Skype?
What I do know is that we have been video-calling each other since we met at the International Brain Injury Association World Congress in Edinburgh in 2012.
There is no doubt in my mind that being able to 'see' each other cemented our friendship despite the distance.
As I was writing this, doubts were creeping in about the timing of my memories, so I called Colleen to check. It was May 2018 that she came to stay, not last year as I had thought.
My memories don't form in a linear pattern anymore, and I have a very poor concept of time. For me, memories can easily muddle themselves and, although each detail is accurate, I don't necessarily put things together correctly.
I do this all the time and knowing I do has absolutely no effect on stopping it from happening.
Recently, Colleen sent me a picture on WhatsApp saying, 'This is where I walk every day.' (The latest Covid-19 guidance on outdoor exercise here: Gov.uk guidance on outdoor exercise
She was building up her daily 10,000 steps and reversed her phone so I could see where she was going while we chatted.
The scenery was stunning, and it was a joy to be able to share this with her.
Over the last month, I have become more adept at using video talking. I stick with using the one app so that I don't get confused. 
I have switched the mode of communication with two other friends in the last month. Both are self-isolating for age and health reasons, and the absolute delight we share in seeing and not just chatting is transformative!
With squeals of delight and laughter, it feels as though we are together. We all feel more connected, less isolated, and as though it isn't so long since we last met.
Joy for Jim
My friend Jim whom I have mentioned in previous blogs, was an entirely different kettle of fish when it came to being connected.
If you read Part 2, you will already know a little bit about him. If you didn't, Jim is 79, dying of lung cancer and has no connection with family.
Recently, he has been struggling with motivation and has been quite weak since undergoing five days of radiotherapy.
I became even more worried about staying in touch when he told me he had fallen.
It occurred to me after I took Jim for a scan recently that it would be the best thing ever to get him linked up too.
The problem was how to do this without a mobile phone.
Not knowing where to start, I reached out on Twitter and received lots of ideas and suggestions.
The kindness and generosity of people was incredible, and I soon had a few ideas under my belt.
I have all that backwards too! I am intentionally not correcting what I have written because my muddles are an excellent example of what it is like to live with memory and time problems following brain injury.
It is no wonder I find it hard to maintain relationships when I struggle so badly with context. The Twitter ‘reach out' actually came before I took Jim to the hospital, not after!
I felt confident now that I could set something up on Jim’s iPad when I saw him – in fact, there were several suggestions I knew I could try.
As it transpired, the setting up was done by a mutual friend, David who has a ‘working’ brain.
I asked him to video-call me from Jim's as soon as he was set up.
When the call came, there on my phone screen was Jim’s pale but beaming face bursting with excitement about being able to see me!
It turns out that Jim has a mobile phone he doesn't use! He reminds me of the poem, 'When I am old I will wear purple!'
We can now use WhatsApp to call each other at any time, and I know this will make a massive difference to the quality of life he has left.
Instead of worrying about how Jim is – I can 'see' how he is.
Instead of Jim feeling disconnected, he can now share smiles and chat to his heart's content without ever worrying about how much a telephone call is costing him.
At the touch of a button, Jim can be with me 'virtually' in my home, and better still, he can 'see' his life-long friends in Kent whom he hasn't been able to visit for two years.
Jim was laughing, saying he will be able to see how much his friends have aged. Then it dawned on him that they would be able to see the same in him too!
It touches my heart quite profoundly that technology is making such a tremendous difference to so many people's lives at the moment.
Crisis is indeed the mother of invention – but it is also the mother of realisation.
Please, reach out. Even if you have lost touch with people you know are vulnerable, make that move and make that difference.
Giving kindness fills us with feelings of kindness.
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, 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 ...
