By Actor Bruce Willis recently announced his retirement from acting due to aphasia, a language condition that affects the person’s ability to speak. Willis made a career out of jumping out of skyscrapers and doing all kinds of wild action stunts, but his condition makes it nearly impossible for him to continue acting on screen.
His ex-wife Demi Moore shared the news on Instagram on behalf of the entire family. “We are moving through this as a strong family unit, and wanted to bring his fans in, because we know how much he means to you, as you do to him. As Bruce always says, ‘Live it up’ and together we plan to do just that.”
Many of Willis’ fans were devastated to hear of his retirement, but medical professionals are using the opportunity to shed light on this rare condition, what causes it, and how it can be treated.
Lost in Translation
Losing the ability to form words would be terrifying for anyone, especially someone like Willis that has made a career out of public speaking.
As Michelle Armour, program lead clinician at the Northwestern Medicine Aphasia Center at Marianjoy, explained, “It’s a language disorder, or a loss of language. An individual with aphasia is going to have difficulty communicating verbally,” she said.
“You lose your ability to read. You lose your ability to understand spoken word, and you can lose your ability to write or speak,” said Dr. Michael Chen, professor of neurosurgery at Rush University Medical Center.
Stroke, tumors, head injuries and other damage to the brain can cause aphasia. It can also be triggered by a brain infection and Alzheimer’s.
There are around 2 million Americans living with the condition and nearly 180,000 get the disorder every year, according to the National Aphasia Association.
“No matter what, it’s a devastating impact on the person’s life,” Armour said. “The inability to communicate can affect our social relationships, our personal relationships with family.”
Doctors say aphasia is actually a symptom of an underlying condition and that symptoms range widely in severity. Research shows that even though the person loses the ability to speak, the condition doesn’t affect their intelligence.
“It’s common to have aphasias after a stroke because that’s one of the most common forms of brain disease, but really any type of brain disease, if it affects the language networks in the brain it can cause aphasia,” said Dr. Joseph Cooper, associate professor of clinical psychiatry at UIC.
Some people do get better. Language and speech therapy can make a difference, but others may need to find another way to communicate as symptoms get worse.
“There’s so much in the brain that we can enjoy and live in ways that, you know, you can totally forget about the language,” said Borna Bonakdarpour, assistant professor of neurology at Northwestern University.
Even though there is no cure, providers like Bonakdarpour that specialize in the condition remain hopeful. “We will find the joy, even in the middle of all the negative aspects of a condition,” he said.
Specialists say they appreciate the Willis family speaking publicly about the condition. The more people that are aware of aphasia, the sooner they can take action when they first notice symptoms appear.
“The more people that know about it, the more support all of the individuals with aphasia can receive, which is so important,” Armour said.
The Adler Aphasia Center in Maywood, NJ is one of the only facilities in the world that treats solely patients with aphasia.
“Many people say it’s the feeling of having words on the top of your tongue, but you can’t get them out,” said clinical director Karen Castka. “A person’s thoughts, feelings, knowledge are still there, their ability to express it. That’s the problem.”
Willis’ condition remains unclear, but his family continues to share updates on social media. His daughter Scout recently reflected on how the diagnosis has affected their family.
“Papa ❤️? Yesterday was so surreal, sharing something so personal. I didn’t know how it would be received, there is always an unknown when sharing out so vulnerably into the world,” Scout wrote on Instagram Thursday. “I’d hoped for some love and compassion, I truly NEVER could have anticipated the depth and breadth of the love we received as a family yesterday.”
She also talked about all the support their family has received over the last couple days.
“It kept hitting me yesterday how much love, energy, and prayers were now being sent to my daddio and just humbling me in a way that brings tears as I write this. I am so grateful for your love, I’m so grateful to hear about what my papa means to you,” she continued.
