Today marks the start of Action for Brain Injury week 2024.  This year the theme for the week is A life Re-written. The campaign explores identity after brain injury and tells the stories of brain injury survivors who have successfully rebuilt their lives.

 Today Susan shares her experience:

Susan looking at camera. Short brown bob. Glasses. Red cardigan.“I wonder how many people actually really understand how a brain injury affects a person?

There is a grieving process to go through where you grieve the person you once were. That person is still there, but changed forever. You CAN have a future, but that future depends on you,  yourself. It’s not easy and you, your carers, family and friends need to be very patient because it takes quite a while. It's not a death sentence but in a way it’s worse. Life as I knew it was never going to be quite the same. Things that I, along with most others took for granted - my health, slowly either stopped working or went into overdrive.

Yes, you're still alive but on hearing that diagnosis, gratitude goes out the window. All the things you'd planned for your life are suddenly  put on hold with no idea if you'll be able to do any of them. SO MANY QUESTIONS and no one understood.

For me, I was once a normal person, whatever normal means. I was a nurse,  a wife and a mother enjoying all that life gave me. After my brain injury, I was still most of those things but I felt a failure in my marriage and a failure as a mother and I certainly didn't feel normal. I couldn't be the wife or mother I wanted to be. There was so much I wanted to do but I couldn't. My body, specifically my brain, let me down. A new normal was forming. 

Initially, I thought I was going to be the one, the one person who could fight this. The one person who recovered completely and I wasted years trying, but the one thing I did learn, which would shape the rest of my life and that was acceptance. This was the key because without it, it's actually impossible to move forward. 

Once acceptance has been learnt, only then can you begin to learn that things you used to do prior to your brain injury can still be done. But they may need to be done in a different way and slower than usual. This is when frustration sets in and that alone is hard to cope with. There are a lot of similarities between cases but there are also the symptoms unique to you and they're the hardest ones to get others to understand. Cognitive ability can change on a daily/ hourly basis and this is the one I struggle with so much. I can lose words while I'm speaking even though I know exactly what I want to say and can even visualise the word I want to say but just can't say it. I usually end up describing the word to whoever I'm speaking to and they say it for me. Or if I'm writing something down, even something simple like a signature that you've written multiple times before, I can suddenly be unable to write just one letter. This is all so frustrating and so hard for us to cope with and harder for others to understand. 

Throughout all the symptoms that come with a brain injury, the cumulative effect can have a huge impact on both your mental health and your family and friends. You may lose people from your life when they avoid you. You need to know that’s not a fault in you, but in them. Some people just struggle to cope with it all and the easiest thing to do is avoid you. You'll have good days and bad and it's like being on both a physical and emotional roller coaster. You need to be a master to your own body and get to know it inside out and be able to tell when something is wrong 'outside the normal' for you and when you may need medical help. This will help prevent an acute problem becoming a chronic one which is so much harder to deal with.

The loss of independence is huge and I know I struggled so much accepting help from friends and family. I cried many tears but this also goes back to acceptance of the new normal.

You'll be introduced to a multi-disciplinary team of people who will be able to help you and for me Cedar formed part of that support team and I can honestly say that the help I received from Cedar was simply outstanding. Throughout this your GP is pivotal to your care and having a good relationship with your GP is important as they can signpost you to various other people who could help. It's all a huge big learning curve but with patience you will still have a life which may not be the one you'd planned for yourself but its still your life, just an adjusted life.

Please don't just survive, you need to aim to THRIVE.”


You can find out more about Cedar’s brain injury services on the website.