Guest post: You’re not beaten yet

March is Brain Injury Awareness Month. For TBI survivors it’s ALWAYS brain injury awareness month whether we like it or not! I read something yesterday that Brain Injury is more prevalent than breast cancer. Yet which do you hear more about? I’m not saying breast cancer doesn’t deserve to be talked about, of course it does. I’m saying brain injury is truly a ‘silent epidemic’.

So I’m using this blog to start the conversation about brain injury and to let you know that it’s a big dirty pebble and that when it gets thrown in the water not only does the splashdown of impact affect the person who sustains the injury but the ripples also spread to those around them too. On that note here’s a guest post written by my Mum (with her song choice) and her experience of what happened.

“Two years ago I went to visit my eldest daughter in Yorkshire to see my Grandson, it was a normal Sunday evening on 30th September 2012, when out of the blue I got a phone call and a voice said ‘are you Lauren’s mum?’ I said yes and then she said something I never expected to hear, ‘I am a theatre nurse from the Royal Victoria Hospital Belfast and I am ringing to tell you that your daughter is in theatre undergoing major brain surgery’. At this I went into shock and could not speak, I had to hand the phone over to my son-in-law for him to be told the details. We had no idea at this point what the outcome would be and how she would feel after the surgery. I immediately thought the worst and that she may die or be permanently disabled or brain damaged, unable to move or speak and may end up in a care home.

She had only just moved to Belfast the month before and this had to happen. I felt helpless as she was so far away from home and I could not get to the hospital straight away. I arranged to fly to Belfast the following week and her sister and family arrived a few days before.

I was in shock and traumatised when I arrived there and everything seemed surreal. I was not able to sleep for weeks. The feeling I had was one of helplessness as I lived so far away and could not do much and also because there was nothing I could do to make it better, I wanted to know what needed to happen when she left hospital and the services involved regarding her long term recovery, I felt frustrated. I don’t think she knew how serious an operation it was.

It would be a long hard road to recovery. Fortunately when she left hospital she had a wonderful partner who cared for her 24/7 so I knew she was in safe hands. The progress she has made so far is remarkable. Obviously it has changed her life, I think it’s a different life from what she expected, she knows she now has limitations. The people that were once her so called friends suddenly disappeared, but other people come into your life. You realise what you don’t need in your life and what is more important.

I hope she is happy in the moment and she has got someone who cares about her. I don’t hear from her as much as I used to, maybe its an unspoken thing and I know sometimes she isolates herself. She is also geographically further away so I cannot see how she is progressing on a day to day level. This probably makes it more difficult to understand the daily challenges.

There are things I still don’t really fathom such as what triggers relapses, how they can just appear and how the brain and body can cause and deal with such emotional swings. Lauren tries to explain them well in her blog and over the telephone but maybe there are just some things beyond comprehension unless you experience it yourself. My main hope for the future is that Lauren regains more of her life back and becomes more able to participate in living again without getting too tired and anxious.”





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