05 Jan Meet Michelle, who is helping “build a better future for survivors everywhere”

Living with a jumbled brain.

I was in a car accident, which really was a case of “wrong place, wrong time”. As I slowed for queuing traffic ahead, a bird of prey called a Buzzard smashed into the windscreen of the truck behind me. The driver couldn’t see a thing and drove into the back of me, forcing my car to hit the crash barrier. The London Air Ambulance was called and rushed me to hospital, where I remained for 10 days.

I was 32 when my TBI happened, although I didn’t understand that was what it was until much later. At the time I was working for a small company that trained apprentice hairdressers. My role was helping these young people find a job, and also working closely with the employers. I enjoyed it as I felt I was making a difference for the students, as well as helping this young company develop. Thus I was keen to return to work…..

Having done research on the Internet, my partner James and I decided I must have post concussion syndrome. We hadn’t really been told anything, not even that when I first arrived at hospital they identified a small bleed on my brain. But we knew some of my symptoms: memory loss, wording finding trouble, difficulty reading and writing etc must represent something. So we blamed it on post conclusion syndrome.

But the worst was yet to come…..3 weeks after my car accident, my Mum died suddenly and unexpectedly. The shock was unbearable, but I tried my best to support my elderly Dad. But I couldn’t talk about her at all. I could listen, but I wasn’t able to add anything. I’d find I couldn’t talk or stop myself from crying. My entire body would tremble all day long, and I’d struggle to eat. But that’s just grief right?  Because of my loss, I didn’t realise that I had severe depression and anxiety.

I attempted to return to work, but I disappointed myself. I spent half a day trying to write an email, which was only about 4 sentences. Although I knew the work system well, I couldn’t remember how to access the documents I needed. My colleague was very patient with me each time I had to ask her to show me, yet again. But the fact that I couldn’t remember how to do it from one minute to the next frightened me. Ultimately I resigned as I couldn’t offer any idea as to how long it would take for me to recover enough to be competent. The company needed to have someone in that role to do able to develop the relationships I had, so my decision was for the business and my colleagues. I didn’t want to damage their jobs by dragging the company down with me.

But that’s when I felt I’d lost my identity. I had been more academic than practical. Now I was nothing. So what was the point of me, why should anyone care that I exist when I have nothing special to offer apart from confusion? However, my Dad needed me. Determined to try to live on his own, without Mum he needed my moral support. Although we lived hours apart, I visited often and would stay for extended periods to help him out.

That’s when I noticed a change in my personality. I had always been calm, reflective, controlled. But now I would explode over silly things. I couldn’t hold it in even though I knew I was over reacting and would regret it later. Losing my temper with Dad made me feel like a terrible person. I respected him and was protective of him, yet here I was verbally attacking him.

Eventually I accepted that I needed help with my mental health. I started counselling and antidepressants, and my anxiety slowly started to reduce. Alongside this I started cognitive training, and giving my brain a little workout. My skills were improving, and I was slowly beginning to recognise parts of myself again.

I felt that some of the anguish I endured could have been avoided if there was more information out there. As someone who had never met a TBI survivor before this happened to me, I didn’t know what to expect, nor did my friends and colleagues.  So I put far too much pressure on myself through my raised expectations. Thus I decided to tell my story in a blog, jumbledbrain.com, as I felt certain that there must be many others who were going through this too. My aim was to raise awareness and educate people what having a brain injury actually means. I didn’t want it to be just a diary of my recovery; it became a series of short articles focusing on a subject area. I wanted it to be something where people could search for a particular issue and see if we had similar experiences. Through it I share coping tips that I have discovered, as well as explaining some of the symptoms in a straightforward way. I have had lots of feedback from survivors and their loved ones saying how my explanations have helped those caring for survivors to understand better what they are going through.

Later I decided that survivors’ stories needed to be easier to find. I don’t really understand how search engines work, and knew lots of blogs were not showing up in Internet searches. But it was clear to me that others where drawing so much support from reading these pieces, showing them they are not alone.

And then it hit me. Lots of bloggers say they get a lot of their traffic from Pinterest. So I set up a group board, inviting other brain injury bloggers to join and post their articles there. That way even if search engines don’t bring their blog up, readers know a place that they can go to discover valuable articles. Currently approximately 500 people follow my Brain injury group board, and it’s still growing.

Although I’m not the person I used to before my accident 3 years ago, it has given me a new purpose. To know that my misfortune has turned into a positive and is helping others is humbling. I hope that I can continue to learn from other brain injury survivors, and together we will build a better future for survivors everywhere.