Mental Health Awareness Week 2017

#ANewMe: How brain injury affects my life and how it motivated me to create Alphabet Brains

#ANewMe is a project by Headway: ‘A New Me provides a platform for people to creatively share their experiences in order to challenge misperceptions of brain injury while demonstrating the value of having access to the right help, at the right time, such as the support provided by Headway groups and branches and our other frontline services.’

This blog post was originally edited and published on the Headway website for a part of this project, you can read it here. I thought it would be useful to post my original on here as it contains a lot more detail.

How I sustained my brain injury

In February 2013 I was visiting a friend in York and after a fall down the stairs I sustained a Traumatic Brain Injury (TBI) as well as a fractured skull and jaw, I have no memory after this. I’ve been told I was knocked unconscious and lying in a pool of my own blood. Despite this, I was sent to bed. The next day my friend tried for many hours to try and wake me, I eventually woke up at 16:00. I threw up many times, it wasn’t normal vomit though it was stomach bile. I was also trying to speak but no words were coming out, just sounds. This was when my friend called an ambulance. It arrived within minutes with a couple of paramedics and a doctor who arrived in a separate car.

My next memory? Waking up after my brain surgery in Hull (I was transferred as York doesn’t have a Neurology department) the brain surgeon had removed a large right frontal extradural haematoma—A large blood clot on the right side of my brain. I was left with a 14cm scar.

You may be reading this and wondering why an ambulance wasn’t called sooner. At the time my friend wasn’t in the room while I was unconscious, he thought I was sleeping a hangover off when he tried to wake me and after a heart to heart with him I feel the ambulance was called at the right time; As soon as he recognised the symptoms. The stomach bile and the fact I couldn’t speak. I’m lucky that he knew these symptoms, not many people know and this is what Headway are setting out to do with A New Me… Raise brain injury awareness.

Do you feel like your brain injury has had a positive or negative impact on your life?

Both. I think it’s impossible to go through something like this and not have mixed emotions but sadly, the negatives often outweigh the positives.

I have a lot of problems because of my brain injury:

  • Chronic fatigue
  • Noise sensitivity
  • Memory problems
  • Headaches
  • Mixing my left and right up

I’m constantly planning my life around these problems, it’s exhausting. Both physically and mentally, I can’t forget or not think about my brain injury because it will make these problems worse. My brain injury is always in the back of my mind whenever I do something, because of this my mental health suffers. I’m constantly going back and forth to my psychiatrist. I’ll go for a few months and think I’m better so I’ll stop going, then something will happen that makes me realise I’m not. It’s those times where I think I’ll never be better and it’s an ongoing battle, which it is but if I sort out the mental problems I face these problems won’t upset me so much.

Something I’ve come to realise over the years:

I believe that your brain injury defines your whole life and everything you do. This may sound like a negative thing but it really isn’t. Accepting that your brain injury defines you makes you more aware of yourself and what you’ve been through. This means you can look after yourself better, both emotionally and physically. It means you’re more comfortable within yourself, more open to talk about your injury and don’t get so upset about the problems you face because of your injury.

The positive impact my brain injury has had: Alphabet Brains

I’ve had a mixture of positive and negatives things happen since my brain injury and it’s the negatives things that motivated me to create Alphabet Brains, a blog and online community for brain injury survivors on a mission to raise brain injury awareness.

I felt so alone and sad after my brain injury. I didn’t receive any help until late July 2013 (almost six months after my injury) one method of help was group therapy. I was so excited to talk to others like me, to make friends and to cheer myself up but it did the opposite, it was so negative. At my first session a man started to cry because after his stroke he couldn’t smell anything, the psychiatrist said “It’s ok to cry” and no one comforted him or said anything. I didn’t know what to do or say as this was my first time with other brain injury survivors. I left feeling sadder, but because it was only my first session I gave it a chance. I went to a few more but had to stop going, it was making me depressed.

Here is where Alphabet Brains comes in! The positive brain injury community that can openly talk about anything and receive advice or comforting words back. I started it because I didn’t want anyone else to go through what I went through, you shouldn’t go through something as life changing as a brain injury alone.

What does A New Me mean to you?

Trying to forget who I used to be before my brain injury and embrace who I’ve become. This is not as simple as it sounds because at the same time I have to be very patient with the new me: Life is more confusing, frustrating and upsetting now but I’ve survived, I know when I need help and I’m so happy that I have Alphabet Brains and am helping others like me!

Alphabet Brains also publishes survivors stories to help raise awareness. Survivors can show them to their family and friends which takes the pressure off having to start a conversation, it’s a comfortable way for others to learn about what they went through and what they may still be going through.

I started it on the 16th May 2016 and since then have had nothing but positive feedback! Survivors thanking me for what I do, thanking me because they no longer feel alone and have others to talk to. I’ve even had people find Alphabet Brains a couple of weeks after their brain injury and message me to say thank you, this is a lovely reminder of why I started Alphabet Brains. It really is the best decision I’ve made since my injury and the best way to embrace the new me!

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