What It’s Like to Battle Aphasia, According to a Speech Pathologist

On Wednesday, Hollywood legend Bruce Willis announced that he was retiring from acting. He has been “experiencing some health issues,” his family said in a statement, and he made the decision to step back after being diagnosed with aphasia, a disorder that affects a person’s ability to comprehend and express language.

“As a result of this and with much consideration Bruce is stepping away from the career that has meant so much to him,” read the statement, which was signed by the actor’s ex-wife, Demi Moore; his wife, Emma Willis; and his five children: Rumer, Scout, Tallulah, Mabel, and Evelyn. “This is a really challenging time for our family and we are so appreciative of your continued love, compassion and support.”

The announcement came one day before the Los Angeles Times published a story alleging that “concerns about Bruce Willis’ declining cognitive state swirled around sets in recent years.” Willis, according to sources that worked with him on set, had trouble reciting his lines and seemed to be losing mental acuity, leading directors to trim his dialogue and shorten his shooting schedule. “After our experience on White Elephant, it was decided as a team that we would not do another [movie with Willis],” the movie’s director, Jesse V. Johnson, told the Times. “We are all Bruce Willis fans, and the arrangement felt wrong and ultimately a rather sad end to an incredible career, one that none of us felt comfortable with.”

There are gradations to how severely aphasia limits an individual’s ability to use and comprehend language, and the disorder can be treated, according to Karen Gendal, a speech-language pathologist at NYU Langone Rusk Rehabilitation. “There’s a lot of room for recovery with aphasia, and that’s the good news,” she told VICE. “Treatment can really make a difference.”

VICE called up Gendal for a better understanding of what it’s like to live with aphasia, how it’s treated, and how significant of a recovery you can make after being diagnosed with the disorder. 

VICE: How common is aphasia, and what are the most common causes?

Karen Gendal: Aphasia is more common than people realize. It affects about 2 million individuals in the United States alone. Aphasia can be caused by a stroke, a traumatic brain injury, disease processes of the brain, like a brain tumor, or other progressive conditions in the brain. But the most common cause of aphasia is a stroke, and it is present in about a third of stroke survivors.

Does aphasia affect other aspects of cognitive function, or does it only impact your powers of language?

I think there’s a lot of misunderstanding about this. Aphasia is an acquired language impairment; it does not affect a person’s cognition, and it does not affect a person’s intellect. It really is a language impairment. But we know that language and cognition are very intricately linked. They kind of go hand in hand. So if a person has cognitive impairment, it may impact their language function. But aphasia itself is just a language impairment.

Does aphasia tend to come on suddenly or gradually?

It really depends on the onset. In many cases, it happens suddenly, such as from a stroke or a traumatic brain injury. In other cases, there can be a slowly progressing degenerative neurological condition that can cause aphasia to worsen over time, and there isn’t really a clear onset for that. It just happens slowly over time. 

When aphasia more gradually presents itself, what is it like for patients to realize it’s coming on, and what are the signs that tell them, like, Something is wrong here?

We all, to some degree, have difficulty with word-finding. In some moments we might say, “Oh, what’s the name of that actress who was in that movie,” or, “What was that restaurant called that we went to the other day?” We all have those space-out moments where we can’t think of the words that we’re trying to say. In the case of aphasia, it’s an abnormal amount of word-finding difficulty, and difficulty using language. A person might notice that it’s really out of the ordinary for them, and it’s impacting their ability to communicate with others. They might notice that they’re not only searching for words, but using the wrong words, or using the wrong sounds, or not understanding someone when they’re being spoken to. 

What does it actually feel like to suffer from aphasia? Is it that you have difficulty comprehending speech, that you can't form sentences in your head, that you can form them but not vocalize them, or some combination of those things? 

It can range. But all people with aphasia have difficulty with word-finding. The most common thing we hear someone say is, “I know what I’m trying to say, but I can’t get it out.” And it can be very frustrating for that person. We also know that it impacts comprehension. So an individual with aphasia might say, “I’m hearing you, but I’m not understanding what you’re saying.” Or, “I’m reading this article, but the words don’t make sense to me.” 

How significantly can aphasia impair your powers of language?

In severe cases, it can be quite limiting. If you think about how vital communication is for us on a day-to-day basis, whether it be talking to your family or friends, or ordering coffee at the coffee shop, or being at work and doing your job, or reading and writing, any change in the ability to do that—even a subtle change—can really impact a person’s quality of life.

What does a particularly severe case of aphasia look like? Do folks ever lose their ability to use language entirely?

I wouldn’t say entirely. There is a condition known as global aphasia in which all of the main language modalities—speaking, understanding, reading, and writing—are impaired to [the point that it] significantly limits a person’s communication. But even for individuals with severe aphasia—we often say that people with aphasia communicate better than they speak. They can be very resilient and learn ways to communicate and engage with others. So there can be severe impairments in language use, but there are also ways to work on that and help a person continue to communicate, to some degree.

What are some tools those with aphasia can use to communicate when language itself is a challenge for them?

When I started [practicing] years ago, the options were quite limited. We pretty much were limited to pen and paper and some pictures. And that works for some people with aphasia—something like a word list or a communication board that they’re pointing to for basic communication of needs and wants. But now, there are some really incredible options in terms of technology—like apps and embedded features in smartphones and tablets—that can help someone with limited verbal expression, for example, express what they’re trying to say.

Generally speaking, is it easier for folks with aphasia to read and write than it is for them to speak and understand speech? 

It really depends on the type of aphasia. In certain types of aphasia, verbal expression is much more significantly impaired than a person’s ability to understand written language. In other scenarios, a person can understand [speech], but might have a lot of difficulty reading. So it really depends on the type of aphasia. And this is why it’s really critical, if there’s a question about whether aphasia is present, to have an evaluation by a speech-language pathologist who can really look at each of those areas of language, determine if there’s any impairment and to what degree, and then set a plan to treat it.

How do speech pathologists treat aphasia?

Treatment of aphasia really takes two approaches. One is restorative, where we’re trying to help the person regain the function or the skill that they’ve lost. We’re doing exercises that are really trying to light up those language sensors in the brain, so that [patients] can improve in their use of words and their use of language. The other aspect of treatment—and these happen simultaneously—is compensatory therapy, where we’re helping a person to compensate for what they’ve lost in real time, so that they can continue to do what they need to do in their everyday life. And a really important part of the therapy picture is family and caregiver training: training the person with aphasia’s communication partner so that they can engage with each other, and the person with aphasia can be set up for success outside of a therapy setting.

Can you walk me through some specific exercises and techniques that speech pathologists use when they're working with aphasia patients?

We might work with someone on how to tune into key words. If they’re trying to understand spoken language and a whole message might be too difficult, maybe they’re focusing on how to tune into a key word to glean meaning from that message. 

We’re also doing exercises that stimulate word-finding. We might train someone to be able to describe something when they’re not able to get the exact word that they're trying to say. So, for example, someone might be trying to talk about an orange, and they can’t remember the name of an orange. So we say, what do you do with it? “You eat it.” What category is it in? “It's a fruit.” What color is it? “It’s orange.” So they can talk about all these semantic features of this object, which either might give the other person enough information that they know what you’re talking about, or it might trigger the person to be able to retrieve the word “orange.” We might take objects and have them specifically state all the different features about that object. And again, that’s lighting up the part of the brain that has to do with language to get those networks to strengthen.

Can you actually rebuild those networks over time through exercises like that?

Essentially, yes. In the case of non-progressive aphasia, that is the goal. We know a lot about neuroplasticity, which is the brain’s ability to regenerate and form new pathways after there’s been damage. And so we are trying to stimulate neuroplasticity with intensive drills, with vocabulary exercises, with language stimulation, in the hopes of helping those neural pathways form.

To what degree can these exercises be kind of difficult or frustrating for folks with aphasia?

They can be challenging, certainly. The goal is not to frustrate the person, but to facilitate their success. These treatment programs are very highly customized. We’re using words that are meaningful to the person, so hopefully there’s engagement because it's important to them. Yes, there can definitely be frustration. But the hope is that over time, it gets easier and that frustration diminishes.

Broadly speaking, do you find that battling aphasia is a frustrating experience for the folks who have it?

Absolutely. In many cases, the person with aphasia is very aware that they’re not able to communicate, and that loss of language can be very frustrating for them—and for the people in their lives. The way that we communicate is so tied to who we are, how we move through the world, and the way we engage with the people in our lives. And so when that changes, that can be really catastrophic for a person's loved ones and friends. Many times, they have to learn a new way to engage with each other. And it can be very challenging. It’s also hard for them to watch the individual with aphasia struggle. We don’t want to see anyone struggle, and when it’s hard for someone to speak, or they’re not understanding, that can be really difficult to witness.

How significant of a recovery can someone with aphasia make?

There’s a lot of room for recovery with aphasia, and that’s the good news. Treatment can really make a difference. People can make a lot of progress and really improve. Many do not make a full recovery back to 100 percent. We say that people learn to live with aphasia. But in terms of individuals being able to resume their daily activities and participate in a full, meaningful life, that is certainly possible, even if there is some residual language difficulty. In the case of progressive aphasia, treatment can help to slow the progression of language decline.

How long does it typically take for folks to make a significant recovery, and how much work does that take?

It’s really different for everyone, and it depends on a few factors. How significant is the brain damage? How severe is the impairment to begin with? How much progress is the person making over time? I can say that in many cases, aphasia therapy over time—and this can be a long period of time, it can be up to years—does result in improvement. And it’s not necessarily a linear path. There can be times where there is some improvement, and then the individual might level off, and then make another burst of improvement later down the road. It’s really different for everyone, and it can be a long process. 

Are there groups where folks with aphasia can come together and find some sort of community among people who are dealing with the same thing they are?

There are many, many groups available to individuals with aphasia. During COVID, many of these have moved online, which has opened access for many people that they might not have had before. At Rusk Rehabilitation at NYU, we have an aphasia community group program, which has been running for many years, where individuals with aphasia can connect and get peer support and connection and socialization. And there are aphasia community groups that exist throughout the country. Many universities have speech-language pathology clinics and programs that run aphasia groups. 

Only someone else with aphasia really understands what it’s like to live with aphasia. Connecting to other people who are going through the same thing, or something similar, can really be helpful. It also shows them that they’re not alone—that there are many other people going through this.

UPDATE: This story has been updated to clarify distinctions between progressive and non-progressive aphasia.

Drew Schwartz is a senior staff writer at VICE. Follow him on Twitter.