What really counts?

From our A New Me and See the hidden me campaigns, to the research we did in producing our new factsheet, Identity after brain injury, specific themes keep coming up repeatedly.

We see that roles, priorities and goals can be changed drastically by brain injury, and navigating this adds an enormous challenge to the journey of rehabilitation and adaptation.

Following on from our feature in the last edition, which focused on views of identity, we wanted to dive deeper into changing priorities. Prior to brain injury, people might follow a pre-determined path in life – a path that might include goals like ‘travel the world’, ‘get a good job’, ‘buy a house’ and ‘start a family’.

But what about after brain injury? How does such a life-changing event affect people’s perspective on what’s important? What really matters to people after brain injury?

We put the question to our online communities.

Time to focus on yourself

It might seem obvious, but we are the lead characters in our stories. At times, most people, but particularly those whose lives have suddenly changed, can spend more time worrying about what others think than their own well-being. Realising that this might have to change and accepting ‘me’ as something that really counts can positively impact life.

“For me, acceptance has to be the hardest thing I have dealt with, as well as stepping away from the people who continually drain my energy and haven’t heard me,” said Rachel Murphy Wilson.

“The important thing now is prioritising things for me instead of putting everyone else first like I used to.”

It’s a view shared by many, including Caroline Walker: “As time has passed (I'm 17 years post-recovery), what matters to me is me.

“In the past, I spent my time worrying about others, my surroundings, and what's wrong with the world. All that does is make me feel ill and upset. Now I concentrate on me and do whatever I can to help me to feel good.”

In an inspiring response, Pedal2 outlines a new ‘seize the moment’ approach to life after brain injury: “My brain injury has taken a massive chunk out of my life that I will never get back.

“I have regularly thought…I'm doing this or that now, not because it's important to my recovery but because I have always wanted to do it. And if I fail, I fail, but at least I will have tried. That's what has changed the most in me, the ‘what have I got to lose’ kind of attitude. The Carpe Diem - seize the day kind of mantra.”

Ten years on from his severe brain injury, Derek Milner finds himself “obsessed” with healthy living, exercise and a good diet. In his comment, Derek highlights this new focus but also raises an important point about how the people around you can change.

As well as giving a massive shout-out to Headway Bristol, Derek said: “Determination to live as well as possible and enjoy what YOU want is unreal. It gives you a real insight into what some people can be like - makes you closer to family and the kids and calmer about end of life.”

Time to connect with others

Having friends and family drift away after brain injury is a familiar story. However, it can help build a deeper, more meaningful relationship for those who stick around. For many, these special people fit into the category of what really counts.
“I feel the big change was the shift in my outlook on important things. Family became my priority in life… well, the ones that stayed around,” said paxo05.

“I am always thankful to still be here, even on my darkest days, and these are plenty. My family IS my world. Without them and their support, I would not be here.”

Nemo24 seconded this: “What matters are family and friends who have stuck by me and helped me get out. The support I've had from Headway mattered. From all the information online and in their booklets as well as being able to meet with my local group.”

“Some old friends and family 'get it'; some still expect that at some point you'll be back to normal,” said Painting-girl, who also raises the benefit of making friends who didn’t know you before the injury.

“New people you meet only know the 'new you', which takes the pressure off somehow…It was a lightbulb moment to realise that so many humans want someone who will listen. So just being able to smile and ask 'how are you' and mean it has made a difference.”

Time to support others

It’s fair to say that many people find themselves moving away from their previous life goals after brain injury, and whether by choice or circumstance, this often includes their career. But this change might give more time and motivation to listen to and support others.

Lee Noble raises this point: “Being kind to others and hoping for the same in return, I went over two decades with my anxiety and many other physiological conditions. Between Headway and behaviour therapy, I've come to terms with and accepted my conditions.”

And Clair Bennett agrees, highlighting charity work as something that really counts:

“I'm annoyed it took for me to be unable to do my old job to have time to do a little. If I'd had time to do charity work before my brain injury, I could have done a lot more useful things rather than the few hours I do now (only a few hours is enough for my silly brain).”

Get involved in the conversation

We hope this feature has helped outline some ways your identity and goals can change after brain injury and that it has given food for thought if you’re on the long journey of recognising the ‘new me’. The ideas discussed here are unique to everyone; when deciding what’s important, there’s no right or wrong.

If you’d like to explore these issues further, find out more about brain injury or search for your local Headway, visit our website at headway.org.uk.

If you’d like to talk things through or need further support, you can contact our free nurse-led helpline on 0808 800 2244 or helpline@headway.org.uk.

And finally, please do join the conversation on our online community at healthunlocked.com/headway or by following the Headway – the brain injury association social media pages. We hope to see you there!