Tag Archives: brain injury

Taking risks and the importance of support – why I wrote a book about my recovery

After an accident, Ben was in a coma for a month and has been working on his recovery ever since. He hasn’t let things hold him back, even when others doubted him. To give others hope, he’s written a book about his experiences. In this blog, he shares a bit of his story. If you want more, you’ll have to buy the book!

I got run over in the Dominican Republic. I was on holiday with my girlfriend at the time. It was the day before we left, we went out for a meal and we were walking back, literally a road away from our hotel, and a car span off the road on to the pavement and hit us both. It killed my girlfriend instantly and I was in a coma for a month. I had private healthcare insurance and that paid for me to go to a private hospital while I was in the coma and fly me back to England when I was able to travel.

Starting to recover

I didn’t know anything when I first came out of the coma. I couldn’t recognise people. My parents were there and my family but I couldn’t recognise that they were my family. To start with I couldn’t speak but that came back quite quickly.

I’d lost so much weight and I was so weak. The physio in the hospital was really good. They got me to do lots of things and my strength started to come back really slowly. Once I was out of hospital, the care team supported me for about 5 months. They were very cautious about what I could do. They wanted to risk assess everything. Fortunately I had a carer, Andrew, who’s now become quite a good friend and we just went out and did things. I think my recovery would have been worse if I hadn’t done that.

Head and shoulders shot of Ben

Basically the brain injury that I had is that my neurons were shaken up so much that they lost lots of connections to other neurons. You brain is just a bit messed up. I think over time the brain recreates those connections so it is something that generally gets better but I’m not there yet. Recovery is still an ongoing process.

Not taking no for an answer

I wanted to go to Glastonbury that year and the care team was like “no, not for three years” but that just made me more determined to go. They said recovery would take a long time, anyway and there were leaps I took to aid my cognitive rehabilitation. Leaps I took into the unknown that did help my recovery. These were leaps that people told me I couldn’t do, however, this made me more determined to do this.

Deciding to write a book

When I was seen by Hammersmith hospital they did lots of brain scans and showed them to doctors, saying “What do you think of this guy, how he’s doing?” and from looking at the scan they guessed that I would be doing terribly and would be in a wheelchair. When he told them that wasn’t the case they were like “Really? How?” – it just shows that brain scans aren’t the best way to predict someone’s future. So he said to me afterwards, you need to write about this because it will give hope to other people going through this.

I went away and thought about it a lot. I wanted to get lots of voices in and it took a long time to find someone who could edit it all together. It’s all about me and my recovery from lots of different points of view and it all comes together as a melange of different stories. To begin with it was incredibly difficult but it was good writing the bits from my own perspective, my take on things.

Front cover of Ben's book showing a profile of a person's head pieced together out of ripped up paper

I hope it helps people going through a similar experience

My experience really shows just how much support you need and how difficult it is to find the right support, but given the opportunity you can do a lot. My best support has certainly been from my family and friends but I’ve had help from people from all different walks of life. I hope people going through something similar would get something from it and also their friends and family. This has had an impact on me and my family, massively.

I don’t know what will happen next. I want to promote the book and see how that does. It’s been difficult having to change my plans. To begin with I was trying to get back to where I was, especially in terms of the job I used to do, but I’ve started to accept that some things will have to change. It’s been good to broaden my horizons.

To read more about Ben’s experience, buy his book here.

If you have a story you want to share, get in touch with Scope’s stories team or visit our stories page to find out more.

It’s time to show your brain some love!

Most of us try to look after our bodies, but how many of us consider our brain? That’s the message behind the Disabilities Trust’s new awareness campaign, Show your brain some love. Marketing Manager Charlie Price tells us more.

We launched our Show Your Brain Some Love campaign on 18 May, to coincide with the 2015 Brain Injury Awareness Week. One of our divisions is The Brain Injury Rehabilitation Trust (BIRT), a leading charity for brain injury rehabilitation across the UK, so the idea behind the campaign was to encourage people to take care and understand the importance of protecting your brain.

It is estimated that every year more than one million people in the UK will acquire a head injury and, out of those, 11,000 will suffer a severe brain injury. Only 15 per cent of those people will be able to return to work within five years and about 4,500 will need care for the rest of their lives.

Brain injury research shows that men between the ages of 16 and 30 are at the most risk. We’re hoping that, by spreading awareness, more people will take care and understand this as an important issue.

Birt, the character behind the Give your brain some love campaign

We’ve introduced a colourful character, Birt, to share top tips for keeping your brain healthy. It’s a way of making a serious message eye-catching, and much easier to read. The campaign has even changed my own outlook! The best thing for us has been the positive reactions when Birt was unveiled and all the positive comments on social media. We used the hashtag #LoveBirt specifically for the campaign, so we could easily see and measure the use of Birt on social media.

It’s been great to see how wide-reaching the campaign has become. We didn’t just launch it nationally on our website. We also provided campaign packs for 15 of our brain injury services. And they were able to use them in any of the activities they were doing, whether it was cake-baking or bike marathons. It was great to see how everyone made use of the materials. Then they could also see Birt on our website and social media channels, so the range has been really wide, which is great.

There are a few things everyone can do to look after their brain, like ensuring you wear a helmet, eating a balanced diet, learning more, exercise, keeping positive, and other things. If you visit our website and meet Birt, you can find out more.

Read more tips to show your brain some love and learn more about the campaign on The Disabilities Trust website.

Creating Tim-Tron, the robot with a brain injury

Guest post from Ian Ray. Ian is editorial manager at The Children’s Trust, the UK’s leading charity for children with brain injury. He leads the Brain Injury Hub, an online resource and forum for families of children with brain injury.

How do you tell your child they may not be quite the same again?

Thousands of parents across the UK face this very problem each year after their child sustains an acquired brain injury.

It’s hard to overstate how shocking this can be for a family, as their otherwise healthy little boy or girl is hospitalised through an impact to the head, or a ‘non-traumatic’ injury such as stroke or meningitis. This shockwave may rumble on for many years afterwards, as children and families contend with a huge range of issues and impairments (it would take another handful of blogs to cover them all!).

Just one of these issues is the difficulty some children have with their own awareness about their injury and its effects. This makes a lot of sense when you think about it, in that the very organ children use to make sense of themselves may not be at full strength.

On the face of it, this lack of awareness might seem a blessing, but actually, it may be hard for children to address their difficulties if they don’t understand them. They may push themselves too hard, or miss mistakes they’re making.

Heads Up, Tim-Tron

Cartoon of Tim-Tron, a robot with a dog
Tim-Tron with his dog

With Heads Up, Tim-Tron, we’ve tried to help parents of younger children broach this complex issue in a colourful and interesting way. It’s a picture book about a little robot who bangs his head, an idea that came about after one of our clinicians compared the human brain to a cluster of tiny working circuits.

We know boys are disproportionately affected by traumatic brain injury, and a comparison with the circuits in a little robot’s brain seemed like a funny way to appeal to them (hopefully without excluding little girls!).

The more we thought it through, the more aspects of brain injury seemed ripe for the robot treatment; the tiredness children experience after an injury might be rendered as a battery running low, or the difficulty some children have absorbing information might be trouble with a processor.

We’d recently launched our Brain Injury Hub resource and forum, and so a story for children seemed like the perfect next step.

Getting started

After working up the story from home, I nervously took my first draft to a writing tutor, who helped me get the book in better shape. He suggested I put together some guide illustrations to ‘storyboard’ the book, which was enormous fun.

As the story developed, it became increasingly important that we didn’t have a big, shiny happy ending. Sadly, we know rehabilitation can sometimes be an ongoing process for children, so it was important that our story ended on a cautiously optimistic note. I hope we’ve achieved this.

When I had something that looked like a (somewhat amateurish) children’s book, our own experts made sure it ‘did its job’ from a clinical perspective. We also shared the draft with some of our families, who weren’t shy about telling us it was far too long.

Illustrating the book

Our director of fundraising was able to have the project charitably-funded, and we were now ready to take on an illustrator for the book. This was far and away the most exciting aspect of the project, as I trawled through illustration directories looking at every conceivable style of children’s artwork.

We eventually chose Garry Parsons, an award-winning artist who hand-paints each page of his books. With his expert eye, Garry saw immediately that my version of Tim-Tron was too adult-like for young children, so he put together a collection of little robot drawings we could show to children to see who their favourites were.

With our main character designed, Garry developed initial ‘thumbnail’ sketches that soon became a pencil storyboard for the entire book. This itself then blossomed into a series of vivid paintings telling Tim-Tron’s story.

Tim-Tron playing with a dog outside his house
Tim-Tron playing outside his house in Transistor Avenue
Tim-Tron in a rocket, flying past a red planet
Tim-Tron on a trip to Mars

Richard Hammond lends his support

Richard Hammond in a recording studio
Richard Hammond records the audiobook

Over the last few years The Children’s Trust has benefited from the support of Richard Hammond, the Top Gear presenter who himself sustained a brain injury during filming. Despite a manic calendar of filming and appearances, Richard took the time to record an audiobook version of Heads Up, Tim-Tron for families to read along with.

With the audiobook recorded, our production process was almost complete, and after a couple of insomnia-inducing slip-ups in our schedule, we got the book to our printer.

Getting the final product back in a series of neat little boxes was a genuine thrill. And shortly afterwards, we were told the United Kingdom Brain Injury Forum had awarded us their “Innovation in the Field of Brain Injury” award for the project, a wonderful recognition of the hard work of our little team.

All we need to do now is get the book into your hands. I’m already proud of our little robot, and I hope his story will be genuinely useful to children, their friends, siblings and families.

Tim-Tron will be available from 13 January for just the cost of postage and packing from The Children’s Trust, email thehub@thechildrenstrust.org.uk if you’re interested.

Scope also has a list of positive children’s books featuring disabled characters and storybooks to download.