What it’s like living with Bruce Willis’ chronic disease by the people who have it

Maddy Mussen

Around 350,000 people in the UK have aphasia, and over a million globally, but a lot of people probably only learned about it this week

You had probably never heard of aphasia before Wednesday when it was announced that Bruce Willis would be retiring from acting because of the condition. This is strange, because aphasia, a chronic disorder that breaks down your ability to talk and communicate, actually affects more people in the UK than multiple sclerosis or motor neuron diseases like ALS (the disease that prompted all those ice bucket challenges, remember?).

Several famous actors have been diagnosed with it too, long before Bruce Willis. Spartacus actor and three-time recipient of the Oscar for Best Actor, Kirk Douglas, once famously said about his aphasia: “What does an actor who can’t talk do?”

Of course, not everyone who has aphasia is an actor – yet everyone needs to communicate to survive, and aphasia gets in the way of that.

‘I lost it all, everything’

Jack was 15 when he developed aphasia. It happened after he had a major stroke when he was playing football in the garden with his brother, Max. The left hemisphere of his brain was affected, which controls the left side of his body but also, crucially, the centres in the brain that helps us communicate.

“I was six foot and a baby,” says Jack, who is now 29. The first day after the stroke, Jack couldn’t speak. “I lost it all, everything,” he explains. Then Jack said his first words, for the second time in his life. And it was a classic: “Of course, it was ‘mum’,” he laughs.

Eventually, Jack was able to regain more simple words, as well as pretty ambitious things like car names. “I love cars, so I could say Audi, Lamborghini, Ferrari when I couldn’t even pronounce dog or cat yet,” Jack says. He’s not sure if this is because of the emotional connection to those words, or the fact he just knew them so well before the stroke.

But doctors gave Jack a grim prediction – he only had three months to regain all of his language skills. He needed to get to grip on the basics, but then his brain wouldn’t be able to take anymore in. He would be left with a significantly reduced vocabulary because he could only use a few months to cram and revise all of the words he’d ever known beforehand.

“I couldn’t speak [at that point], but I said ‘fuck you’ to the doctor when he told me that,” Jack says. Thankfully, the three-month prediction didn’t come true, and Jack is still learning words nearly 15 years later. “I’m beating that doctor every single day,” he says.

Words and speech make up so much of our lives, it’s something we naturally take for granted. The reason Willis’ story, (and the stories of Douglas, Emilia Clarke, and other actors with aphasia before him) has resonated so widely is that he’s an actor. Not only does this mean his reach is massive – more people now know about aphasia because of this week’s news than ever before – but because his job relies on his ability to talk. Someone who understands that particular struggle more than most is Anna, an aphasia sufferer who used to be a journalist.

‘I was trapped in my brain, I couldn’t get the words out’

“That was the hardest bit,” she reveals, “because I had this sort of syndrome where I was trapped in my brain. Everything in my brain was functioning, but I couldn’t get [the words] out.” Anna was 38 years old but had completely lost the ability to read and write. Sometimes even her processing of other peoples’ words got jumbled. “Someone would be chatting to me and suddenly their language just sounded foreign, and it would be English but all the words would dismantle inside my brain.”

Anna’s aphasia was also caused by a stroke, which occurred after her chemotherapy for cervical cancer lead to her getting a brain infection and blood clot in her brain.

Strokes are one of the most common causes of aphasia, according to speech therapist Elisa O’Donovan, who works with people with aphasia every day: “There is a significant number of people living with this. It is a chronic condition, so people who have aphasia will be managing it for the rest of their lives.”

Not all aphasia is caused by a stroke or brain injury, though. “There’s also something called Primary Progressive Aphasia,” says Elisa, “which is almost like dementia to the language parts of your brain.”

Aphasia doesn’t tend to impact your IQ or intelligence, “Except maybe with primary progressive aphasia,” Elisa explains.

In an Instagram post, Bruce Willis’ daughter Rumer acknowledges this aspect of aphasia, saying: “As a family, we wanted to share that our beloved Bruce has been experiencing some health issues and has recently been diagnosed with aphasia, which is impacting his cognitive abilities.”

https://www.instagram.com/p/Cbu-CyELWio/

But for the average aphasia sufferer, it is normally just language skills that take the hit, and people are just as smart and self-aware as before. This can be incredibly tiring for aphasia sufferers, who can end up feeling patronised as a result of their slower communication skills. “Now I just tell people I’ve had a stroke,” Anna admits, “so they don’t think I’m drunk or think I’m stupid. Now I just own it.”

And what really matters most to those with aphasia is patience: “If people are patient with you, that’s when you get better,” says Anna, “If someone’s got the patience to sit and listen, you think ‘Oh, my words are getting better now that someone’s not rolling their eyes or blanking out.'”

‘This is my second life, I’m lucky to be alive’

Though even in the safest of spaces, people with aphasia can still suffer, because the world is built for those who can speak. “If you think about when you have a crisis in life or something bad happens, people tell you to go and speak to a therapist or a professional,” Elisa says, “but that’s really challenging for people with aphasia to do because often talking therapy isn’t something they can engage in.”

While there is a risk people with aphasia can develop depression, and Jack “so many people assume” sufferers do, he has always remained optimistic.

“This is my second life. With [surviving] a stroke, I’m just lucky to be alive.”