What it's like to have aphasia, the 'devastating' language disorder Bruce Willis has

Before what she and her husband call their "one bad day," Christine Patten was a director at a global law firm and an expert communicator.

Now, Patten, 54, struggles to describe what happened after she developed aphasia in 2016 following a sudden brain bleed, sometimes taking long pauses to find the right words, or letting her husband, Vincent, jump in to take over when it becomes too difficult.

Processing what others are saying is a challenge, especially in groups of people. And she has to practice reading every day, which is frustrating, because it still sometimes takes her 30 minutes just to get through a short article. (A few years ago, when she first developed aphasia, it would have taken her three hours).

"I know in my brain all the right words I want to say, and the thoughts that I have," Patten said slowly from her home in Toronto.

"And as soon as I open my mouth, all things get wrong. It is so difficult to know that I used to be smart — I am smart now — it's just the processing the words out of my mouth. It's just this sense of complete frustration."

What is aphasia?

There are over 100,000 Canadians living with aphasia, a communication disorder that affects the ability to understand and express language, according to the Aphasia Institute. Aphasia is usually the result of a stroke, affecting about 30 per cent of stroke survivors. But it can also be caused by a brain tumour, brain injury, and is sometimes an early symptom of dementia. 

There's a general lack of awareness and understanding about aphasia, with only seven per cent of people in a 2020 online survey by the U.S.-based National Aphasia Association able to accurately identify it as a language disorder. Yet, as the association notes, aphasia is more common than Parkinson's Disease. 

But that awareness is shifting now that it's been revealed that actor Bruce Willis is stepping away from his career because of aphasia. In an Instagram post Wednesday, his family said Willis, 67, "has been experiencing some health issues" and is suffering from aphasia that is impacting his cognitive abilities.

While some of those with personal experience with aphasia, including Patten, say the news about Willis is truly awful, they are also relieved to see the condition make headlines.

 "I am very appreciative of the Willis family for their courage, in actually coming out and using the term. It's not a very well understood condition," said Elyse Shumway, a speech language pathologist and clinical manager at the Aphasia Institute in Toronto.  

A 'devastating' condition

Aphasia can impair all four modalities of language-based communication: speaking, writing, understanding spoken language, and reading, Shumway said.

The left hemisphere of the brain typically controls language, so aphasia can result when a stroke or injury occurs in that region, according to March of Dimes Canada. There are many types of aphasia, March of Dimes Canada explains — such as Broca's aphasia (the inability to fluently express language, with poor speech), apraxia of speech (the loss of ability to execute the movements required for speech production), and Wernicke's aphasia (severely disorganized language that can sound like babbling) — and the exact location of damage in the left hemisphere will determine the type.

But people with aphasia are typically still cognitively intact.

"Aphasia by itself is not a thinking disorder. People are still capable, they know what they want to say, they know what they want to convey, but they are blocked from expressing it," Shumway said.

"Some people liken it to your first language suddenly becoming a second language."

Symptoms can range from mild — say, someone with the odd word-finding difficulty — to profound, someone who can't speak or understand language at all, said Lori Buchanan, a psychology professor at the University of Windsor who specializes in psycholinguistics, and is also the director of Aphasia Friendly Canada.

"It's arguably the most devastating of any kind of injury that people can sustain," Buchanan said.

"If you ask people 'how would you feel if you were paralyzed in an accident?' people always say that would be the worst thing ever … but if you ask people who have been paralyzed in an accident, they tend to be as happy as the average person. People with aphasia are not happy. It's really isolating."

'They are so afraid of being thought of as stupid'

It takes a lot of patience to communicate with someone with profound aphasia, Buchanan said. Some people are able to draw or write a few words. Some can respond in some way to yes or no questions. Sometimes, you can understand what a person is trying to communicate by a change in their tone.

"The key to communicating with someone with aphasia is to be patient and be resourceful and flexible, and importantly, not to treat the person you're communicating with like an infant," Buchanan said.

"They're cognitively intact and they have to be treated like that."

People who have the condition say it's very frustrating, Shumway said. Not only can they not express themselves, but other people also tend to misunderstand their speaking problems as thinking problems.

"They are so afraid of being thought of as stupid," Shumway said. 

Learning how to communicate

Depending on the cause of the aphasia, some people do recover, Shumway said. If the condition is due to a stroke or brain injury, it depends how much damage has been done, but the brain can heal.

Still, that's not always the case. The National Aphasia Association notes that if aphasia symptoms last longer than two or three months after a stroke, "a complete recovery is unlikely." There is no medical cure.

But people can still learn how to communicate, and that's where speech therapy as well as working with the family of someone with aphasia to come up with compensatory strategies comes in, Shumway said. A combination of hand gestures, miming ideas, writing key words while speaking, and using photos and drawings can be quite effective to get a point across, she said, noting that aphasia is a family affair because of the group effort required to communicate.

"The people around them become their communication ramp."

That was the experience for Vincent Patten, 56, who had to re-learn how to communicate with his wife. He had to be patient, stop himself from trying to finish Christine's sentences or interrupt her, be completely present in all conversations, and learn to let her get her thoughts out — however long that might take.

"You always think you're a good listener, but you're not until you're dealing with someone who has aphasia. You think you may be patient, but you're probably not," Vincent said.

"You really have to listen and take your time to let someone else take their time."

'I was devastated'

Christine Patten has suffered from anxiety and depression ever since what she thought was a migraine, but was actually a cerebral venous thrombosis, left her with aphasia. It was while she was in rehabilitation, after three weeks in the hospital, that she realized she'd survived a brain bleed and a craniotomy, but something was still very wrong.

A speech therapist asked her to explain the difference between a cat and a dog. She couldn't.

"I was devastated," Patten said.

Her husband and kids suffered, too, Patten said, as they had to watch her crying on the floor because she couldn't figure out the instructions to bake a cake; because her brain wanted to say "June," but her mouth kept saying "January."

And while her condition was on the milder side, and she makes improvements every year, it takes constant work and practice, Patten said. 

"You never really finish having aphasia."