Welcome to My World - Lewis

We're marking Action for Brain Injury Week (28th Sept - 4th Oct 2020) with a member-led campaign to raise awareness! Each weekday, we've been introducing you to a different person's story - inviting you into their world and how they experience it after brain injury. Today, we're talking to Day Service member Lewis!

Lewissquare

27-year-old Lewis was just a teenager when he underwent surgery to treat a rare brain condition called Rasmussen’s Encephalitis (which caused him almost constant seizures). This involved disconnecting one half of his brain from the other, however the procedure left him with a lasting brain injury. 

I was 14 at the time. I didn’t have a clue what my condition was, it was all a blur really…I was unable to walk talk and do daily living skills. I was in rehab for 3 months, I had to have intense physiotherapy, speech and language therapy, and counselling.

He now lives with left-sided weakness, extreme fatigue (physical and cognitive), blindness in one half of his field of vision (hemianopia), and more nuanced challenges with information processing and memory. 

My cognitive fatigue really affects me so I can be really energetic physically but mentality I’ll be absolutely exhausted because my brain’s working harder to function. So that’s a bit struggle in my life and that sometimes gets me down.

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He has also spoken about the profound impact his injury has had on his mental health, particularly as a young man:

People didn’t really understand what I was going through… at that time I used to take out my anger and I used to blame the people I loved most on what’s happened to me. I think you realise afterwards how much it affected them, when you get over it yourself. I look up to them so much now.

If I was to meet someone new I’ll always think “what are they thinking of me?”. With my mental health I used to hide it away… I’ve learnt to deal with those things… Once you open your eyes and realise you have these problems, it’s a lot easier to deal with them and control them."

Lewis first became a member of Headway East London in 2013. Attending on Fridays, which typically has a higher proportion of younger members, Lewis was fast introduced to a peer support network with similar interests and experiences. Over the next 7 years, with support, Lewis has been engaged with a huge range of projects and services on offer at the Day Service. He’s engaged with our psychotherapy and physiotherapy, and even started running his own gym class for other members at the centre which was hugely popular.

Headway is very supportive of me and my family. I like to meet different people who have had similar experiences like myself”

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In the gym I built in my garage

Ever since this pandemic started, it caused my depression and anxiety to get a lot worse. Also, I really missed being able to socialise with friends and family without social distancing. But Headway have really supported me during this time; I still get my counselling session over video chat… also we’ve been video chatting with friends and staff at Headway which really helps with socialising”

In 2016 Lewis took part in his first public event talking about his brain injury at the Wellcome Collection; from there he has become an integral part of the charity’s public engagement work, and delivered vital training to working professionals and students across London. He’s given motivational talks about his brain injury at a number of events, and last year shared more of his experiences for a podcast produced at Headway East London.

I don’t wanna keep looking back and asking “why has this happened to me?”... sometimes I feel like I want to forget about it. That’s my past now.”

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Quality time with my daughter Willow

Challenges still remain; navigating a world where his imbalance and vision problems when he's out with friends can often mean people assume he's drunk. And many people still do not understand the complexities of a hidden disability. But fast forward to 2020 and he’s achieved some amazing things: he's now qualified as a personal trainer, and he's had a baby with his partner. 

“I used to take for granted a lot of things in my life, and I believe what’s happened to me has probably been a really big positive in my life. I’ve always been a family man, my family mean the world to be, my little girl hopefully she’ll look up to me...and I can be that man I've always wanted to be."

" Before my injury I was lost, and when I had my brain operation I sort of got on the right path. I started to move forward.”

Lewis kindly told his story as part of Headway's member-led campaign "Welcome To My World" for ABI Week 2020.

MORE: You can listen to Lewis talk further on our podcast "The World Beyond My Head" - exploring the links between brain injury and mental health.