Still the Same You

Jenny Clarke MBE talks exclusively to Enable about SameYou, the charity she founded with her daughter, actor Emilia Clarke MBE, after Emilia suffered two brain aneurysms. We learn about the charity’s work and the impact of brain injury, which affects one in three people 

Jenny and her daughter Emilia.

“With Emilia, the first time, it was such a shock,” admits Jenny. “The second time was catastrophic, because she went for preventative surgery and it went dreadfully wrong.” 

Jenny Clarke is talking about her daughter Emilia, who experienced her first aneurysm – a subarachnoid haemorrhage – in 2011, when she’d just finished filming season one of Game of Thrones. Two years later, Emilia almost died during surgery for a second aneurysm. 

Brain injury – caused by things like aneurysm, stroke, infection, or trauma – can happen to anyone at any time. Emilia survived two aneurysms, which provided the motivation to set up SameYou: “She said ‘We have to take this and see what we can do’, in terms of using her platform for visibility,” explains Jenny, who reveals that Emilia had been very hesitant about sharing her story. “She said it was a celebrity sob story, and it’s not about her.” 

USING HER PLATFORM 

In 2019, when Emilia finally told the world about her brain injury, the response was incredible. The SameYou website crashed as the charity received thousands of emails. “They didn’t say ‘Good for you’,” notes Jenny, who lives with three aneurysms herself. “They were ‘Oh my goodness, I never realised I could talk about this’. The people who contacted us felt as though their brains had let them down. These messages came in such volume, we realised there was obviously a need to respond, so we did.” 

The charity now works with a global network of volunteers – many of whom are brain injury survivors – who talk to people who get in touch via the website. “We see this as being the start of therapy,” reveals Jenny. 

“People want to be listened to – it’s so important. Particularly when you’ve got mild to moderate brain injury, and the consequences are debilitating; they really prevent you getting on with your life, but people say ‘You’re just tired’. People don’t understand.” 

LACK OF CARE 

Improving understanding and awareness of brain injury is high on the list of priorities for Jenny, who shares the story of a previously high-flying career woman she spoke to when SameYou was first set up. The woman had had a stroke, which affected her cognitive abilities. “One of the things that has stayed with me is this lady trying to buy a sandwich, she couldn’t handle her loose change,” she explains. “Big city guys would come and push past her and be very abrupt. If you’re fumbling for something, there could be so many reasons and I’m sure your readers understand and identify with that. People need to take a lot more care in how they treat others.”

Both Jenny and Emilia were awarded the MBE for Services to People with Brain Injuries in the King’s New Year’s Honours List. The honour has led to increased exposure for the charity, which – as well as providing valuable help and resources for brain injury survivors, their families and clinicians – also funds research projects and an online neurorehabilitation service called NROL

“The NROL programme is the most exciting because it’s where we can see the most direct impact,” says Jenny. “Online therapy has huge advantages.” NROL has now treated just over 1000 people in Lancashire, and the small team at SameYou is hoping to see the service rolled out across more health boards. “Our NROL programme also has a module for families. It’s about peer support; husbands, wives, mothers, friends getting together to talk about the symptoms and how they cope. The impact of brain injury upon the survivor and their wider circle is huge.” 

SIGNIFICANT RESEARCH 

The charity is involved in research, including a study with Spaulding Rehabilitation in Boston, which is “focused on resilience – trying to understand what makes somebody able to recover better than somebody else,” explains Jenny. SameYou is also supporting a major survey looking at the needs of young adults after brain injury, in a bid to improve rehabilitation.

None of this would have happened if it wasn’t for Emilia’s experiences and the duo’s drive to make a difference. Jenny told us: “I fought to get her as much treatment as possible, the highest quality, the best care; I was a real tiger mother. It was understanding that, even though she hasn’t got visible symptoms and consequences, there was an awful lot going on behind her eyes.”  

Jenny is passionate about addressing the mental health impact of brain trauma, especially for young people: “When you’re young, your life is about to start, you don’t really know who you are. If you have a brain injury, which makes you question your brain and your mental abilities, and you have depression and anxiety on top [Emilia suffered severe anxiety and panic attacks], it’s tremendously difficult. We need much more understanding and empathy – brain injury doesn’t just happen to the brain. It happens to all of us.” 

GET INVOLVED 

Discover helpful resources, share your story, contribute clinical evidence, or sign up or donate to support the work of SameYou at www.sameyou.org

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