Brain injuries and lack of insight

When the UK went into national lockdown a gazillion weeks ago, social media, and the media in general, were full of advice on how to cope with the sudden isolation. There were quite a few pieces from brain injury survivors too, as the strategies for coping with one are very similar to those for the other. By now, everyone is familiar with the main three:

• Keep a routine
• Keep exercising
• Keep in touch with people.

I know all this, I’m one of those people who wrote about it in March. At the time, I managed all three things for weeks on end. So why, months on, am I now finding it so hard to carry on?

Lack of insight following brain injury

First of all, it took me a while to realise I was struggling at all. I felt like things were going ok, but I wasn’t sleeping too well and would become frustrated with the smallest set back. It took a while for me to acknowledge that I was struggling.

A lack of self-awareness, or a lack of insight, is fairly common in a brain injury survivor. I’ve suffered form it before and have written about it in my book. Headway UK describes self-awareness as ‘the ability of a person to observe and reflect on their own thoughts and actions. Brain injuries, especially injuries to the frontal lobes, often cause this ability to be significantly affected.”

This explains why was perfectly aware of what I needed to do, in fact I was very good at telling other people about the benefits of a routine, while completely failing to follow my own advice.

Given the effect which a lack of self awareness has, how does someone manage to spot it in themself?

Weekly planners and to-do lists

My usual steps to keep a routine were lagging. I planned all my events into a weekly diary, only to go and do something else. Friday afternoons became stressful as I rushed to complete all my tasks and errands before the weekend. I have to admit that a fair bit of time was spend moving unfinished tasks from one week to the next.

It was ridiculous and demoralising. I would often admonish myself with 'look at everything you didn’t do this week! You aren’t managing anything, what a failure.'

It was clear that using a calendar wasn’t working, which would then cause my mood to spiral downwards. I decided to try a to do list. These had worked for me before my brain injury, but I found them more difficult afterwards. Having a daily to-do list means that it takes just one migraine to wipe out a day and suddenly you are behind again. Another day of failure.

A friend on Twitter posted that she tended to write to do lists for the week as she found them easier, and less demoralising. I took a leaf out of her book and tried it. It worked for a while and was very satisfying to finish with a relaxed Friday afternoon and a list full of ticked boxes. But it didn’t last.

Problems caused by lack of insight

Just like with the weekly planner, I began translating items over from one weekly check list to another. On Friday afternoon I returned to my old habit, re-setting the dates on tasks which I hadn’t completed so I could pretend to do them next week.

This pattern of ignoring tasks continued across digital calendars and printed diaries. Whether the lists were on scraps of paper, neatly recorded books or sent as notifications from my phone, I was an equal opportunity ignorer. It was clear that the problem wasn’t how I was recording my tasks.

Nor could I blame memory either. I knew the lists and planner were there. I’d start my day looking at them but would then drift off into other things. Even while I was doing something, at the back of my mind would be the little niggle of tasks waiting for me. So the problem wasn’t memory, what was it?

Now we begin to see the effect of a lack of insight. I knew there was a problem, and had managed to work out what the problem wasn’t. How could I find out what the problem was?

I’d been in this situation before and knew that I was unlikely to find the answer myself. What usually happens is that someone else, someone completely oblivious to my conundrum, will make a passing comment. Suddenly the solution would be revealed.

Attention and concentration deficit during pandemic

This time I found the answer in another ABIL webinar held in October and titled “How to look after yourself and enjoy life whilst caring.’ It was presented by Sara Challice, the best-selling author of “Who Cares?” and founder of www.whocares4carers.com. She was responding to a question and said “Memory problems may actually be a problem with concentration and attention.”

Of course! The problem wasn’t with my memory, or with the planners or the to-do lists. It wasn’t whether they were on my phone so I had them all the time nor if they were on a piece of paper in an attempt to reduce screen time.

The problem was that my attention had been ability to concentrate has been decimated in 2020.

The last eight months have seen an overload of news stories, rules, breakthroughs, setbacks, twitter feeds, more news stories, commentaries, opinion pieces, protests and counter protests… My attention barely has time to settle on one item when it is pulled away by the shiny or terrible new thing happening elsewhere. And this has been happening for months now.

Effectively, I have retrained my brain to have a minimal attention span. Even when I finally focus on one thing, and try to engage my concentration, I am usually pulled away within minutes. I can look at a hundred different things but never actually getting anything done! (Even this last paragraph has taken me far too long as I looked for information on brain plasticity and ended up reading about water on the moon.)

Reset to a FARCE

Clearly it is time to start again, time for my own reset button similar to the reset button produced for the US/Russia relationship in 2009. (Yep, more unnecessary web searching while I’m supposed to be writing). I have come up with a little mantra to help reset my focus when I find myself doom scrolling, or panicking about the proximity of someone on the pavement.

FARCE

Focus on what you can control

Acknowledge your thoughts and feelings

Connect with your body and note what you are doing and engage with that

Remember that this is a marathon not a sprint

Even today’s rules will soon go out of date.

To take these one at a time:

Focus on what you can control.

I can’t control what is posted on Twitter nor if someone is walking in the middle of the pavement. I can control how I react, whether that is turning the phone off or waiting at the edge of the road until they pass by.

Acknowledge your thoughts and feelings.

As someone put it to me, if you aren’t uncomfortable right now then you just aren’t paying attention. Running away from stress or trying to ignore your anxiety is only going to make things worse. Give yourself time to notice how you are feeling and take care of yourself.

Connect with your body.

Notice what you are doing and engage with that. Whether that is taking time to enjoy a cup of tea, or to stop and listen to the rain for a minute. Slowing down to pay attention to what you are doing can help to retrain your attention and concentration.

Remember that this is a marathon, not a sprint.

This one is important right now as some dark and lonely months beckon. This is no longer an acute crisis and all talk of ‘V-shaped recovery’ has gone from economic and social commentaries. It is very easy to get bogged down into the fear that it was always be like this. But change is a constant, we are not the same people we were a year ago, and we will be different again in another year.

Even today’s rules will soon go out of date.

This ties into number four, and may not be necessary for everyone. However, I have written elsewhere about how brain injury survivors have been affected by the rules. I am starting to feel less anxious in public now. But still find myself wanting to conduct impromptu public service announcements on the correct way to wear a mask. It helps to remind myself that I’m not the world’s police and the most people are just doing their best.

Now when I find myself training my brain the wrong way, I’ll think FARCE, have a quick smile and return to my planned tasks. It is only week one, but here is a blog post as proof that the concentration and attention span have improved!

If you have any other tips on dealing with a lack of insight or improving concentration & attention, please let me know!