Community,

“I kept on falling over, and hallucinating.”

Out of the blue, Paul was hit by encephalitis, an infection of the brain. It left him confused, and unable to navigate everyday life. Then he was introduced to Headway Luton.

One morning in early summer 2014, Paul’s life changed forever. He says:

I’d been having headaches for a while, but I didn’t think about it. I managed to ring my sister up. I said, “I don’t feel well,” so she came around to the house.

“I later learnt I had something called encephalitis, which is an infection of the brain. A lot of what happened has been explained to me by my sister because I don’t remember much of it.”

Paul was taken into intensive care, and then over a number of months, was moved to another ward in hospital, and then to rehabilitation.

“I had to have physio for my walking because I kept on falling over, and I’d hallucinate things. See things that weren’t there. I was confused about everything. Didn’t know my left from right. I’d put my shoes on the wrong feet. I couldn’t go anywhere on my own. I’d just end up wandering off.

I went home for a few days, and then my Occupational Therapist brought me down to Headway, and then we all went from there.”

Finding Headway

Headway Luton is part of a national network helping people who have Acquired Brain Injuries. It is one of the brilliant local charities supported by Luton Rising.

One important part of that is helping them re-learn basic cognitive skills, like arithmetic, reading and writing.

They give people with brain injuries a place where they can be understood and supported, and where they can piece together lost skills and so regain confidence. They help them rebuild their lives.

Paul says: “With the Maths, years ago I would have thought it is easy, but now because of my brain injury I’ve got to really think about it. I can’t remember, for example, how to do division. I lost my brain and my memory from the past – it’s disappeared. Another task is that they’ll get you to read a story, and then you’ll get questions afterwards about the story.

They get your brain to think. Rather than giving up and saying, “I’m not doing that. I can’t be bothered. This isn’t working.” What’s the saying? If at first, you don’t succeed, try, try again. Now I can actually sit at home and read a newspaper. I can do a crossword.

They listen to your problems as well. Letters that you don’t understand, you can bring them in here. Some of the stuff you get through the post, like your PIP [Personal Independence Payments] form – that’s 44 pages long. They say, “Paul, don’t worry about it. Bring it in. We’ll sort it out together.”

90% of the people here have been at death’s door. Nobody’s stupid. I learn a lot from these people. You come in, have a cup of tea, have a chat. It’s helping you to be stronger in yourself, to give yourself more confidence so you don’t get low.”

A beacon during lockdown

Lockdown forced Headway Luton to close for 4 months.

“They’d ring you up, at least a few times a week, “How are you? Do you need anything from the shops?” They sent worksheets and so on through the post for me, because I haven’t got a computer. It was a great help, but when we eventually got the letter saying Headway was reopening, it was like winning the lottery.”

Paul manages to live independently, and is making progress every day. He says:

“Life could be a lot worse. I’m progressing, with the help I get here at Headway. I feel quite confident in myself. I mean we all have our down days, don’t we? I feel all right in my life. I feel quite happy. I do get frustrated because I can’t go to work. I was an HGV driver before. I liked working. There are things that I can’t do that some can do, like use a computer. I feel confident in myself, as a person though, I feel all right.

It’s just an amazing job that Headway have done. I can’t thank them enough really. If my sister was sitting here now, she’d tell you the same: ‘He’s come a long way from where he was.

We need Headway. We really need it, you know? I’d be lost without this place.”