Like Bruce Willis, I have aphasia. That’s what life is like with this incurable disorder.

In late March, Bruce Willis said he was stepping down from acting because of aphasia. (Photo: VCG via Getty Images)

In late March, Bruce Willis said he was stepping down from acting because of aphasia. (Photo: VCG via Getty Images)

When news broke on March 30 that Bruce Willis was stepping down from acting (at least for now) due to aphasia, perhaps many people first heard about the disease. However, for me, aphasia has become a major part of my constant reality, affecting me every day, all day.

Four years ago my brain made an unexpected detour. I suffered a stroke in my sleep. It happened suddenly without warning. I had no symptoms or risk factors.

After that, there were obvious physical signs that I had a stroke. The fact that I could not use my right hand at all was impossible to ignore. Immediately after that, trying to regain my physical strength and abilities took up all my mental attention. He considered himself lucky – and he was. I did not lose the ability to walk and could still speak.

Physical therapy helped me regain strength and control of my right arm. Eventually, I could hold the pencil steady enough to write semi-legible words, and soon after that I started typing again. At first I was so relieved that I could use the keyboard that it didn’t even matter what assortment of letters and symbols appeared on the screen.

However, I soon had to return to work and try to resume my normal routine. I had a lot to write. Deadlines were approaching. The assignments had to be completed.

That’s when I started to realize that some of my words seem to be gone.

I learned that I have an aphasia that sounds like a new cool shade of lipstick or maybe a trendy nightclub. Instead, what happens is when I have a hard time remembering words that seem to be stuck forever at the tip of my tongue, barely out of reach.

While aphasia is referred to in various medical sources as a “condition” or “disorder,” it is also commonly referred to as a symptom of another condition because it often occurs as a result of stroke, brain tumor, or other brain problems.

Temporary aphasia can occur due to a mini-stroke, seizure, or severe migraine. However, long-term aphasia is generally considered incurable and permanent.

My type of aphasia – the result of damage to the frontal lobe of my brain caused by my stroke – is long-term. A few months after the stroke – after a “wait and see” period when there could be a sign that my aphasia was temporary – the doctors warned me that it was a condition I would probably live with for the rest of my life.

However, I know that the brain is a mysterious miracle that often works in unpredictable ways, so I hope that eventually some of these lost words may sporadically appear as spring flowers that appear after a long winter . Meanwhile, I am in a muddy fog.

“As a writer, words are my livelihood, so when they went missing, it was a cataclysm in my world,” the author writes. (Photo: presented by Bobby Dempsey)

There is no cure for aphasia. The only treatment options are speech therapy and occupational therapy, which can help strengthen the remaining speech skills, while the person is also learning other ways to communicate. Doctors also recommend brain games and other activities that can help keep the mind sharp and can have cognitive benefits.

As a writer, words are my livelihood, so when they disappeared, it was a cataclysm in my world. But I had to learn to adapt to – or at least tolerate – my new reality.

Often I manage to write the first draft in some happy ignorance. I will type at a decent pace and come up with suitable alternatives for the words that pop up from me. Then I go back to proofreading. Then I could understand that I had typed “a lot” rather than “should”, or that the phrase I wanted to use was something completely different and unrelated.

Always looking for a silver backing, I tell myself that the occasional fuss of words makes my writing more fun. It adds a little surprise and wisdom. You never know what might happen next! But I understand that this is the spontaneity that my editors would like to do without. As a result, my writing process – already a bit difficult due to long-term problems with my hand – slows down even more when I compulsively check and triple check each sentence, looking at each word with laser focus, hoping to be able to notice any missing belong to.

No matter how painstaking this process may be, it is much better than a more frustrating scenario if there are no words at all, which happens much more often than I had hoped.

Fighting to find words when you write is hard enough. It’s much more frustrating – and confusing – in situations where you have to talk. I had already suffered from social anxiety and a strong fear of public speaking even before aphasia entered the picture. Now the thought of speaking in public is positively scary.

As a writer, words are my livelihood, so when they disappeared, it was a cataclysm in my world.

I used to have the courage from time to time to speak at writers’ conferences or participate in media interviews about the stories I wrote or the topics I covered. Today, I almost always turn down these opportunities because the likelihood that I grab words or stumble through prolonged awkward silence causes me too much stress.

I imagine trying to make a presentation at a conference, only to have it quickly become a more interactive experience for the audience than anyone planned if I’m trying to act out what I’m trying to say, or throw in visual cues like a bad version of a charade.

The ability (or inability) to communicate affects every aspect of daily life. My anxiety is heightened before I have to call, go to a meeting or social event, or move on to any other situation that will require verbal interaction. Friends and loved ones are supportive, often pretending not to notice – or joking that it happens to all of us as we get older – and they are extremely patient waiting for me to come up with the words I want to use. But it is a frustration for all involved – and more anxious and awkward in situations with strangers who do not know about my condition. It has come to the point that I often just avoid interactions that require me to speak up.

So I am very sympathetic to Willis, who has reportedly found it increasingly difficult to memorize his lines. I imagine that he felt great suffering due to the fact that he repeatedly tried to go through his scenes, tried to shoot for a double, while others could not do anything to help.

Aphasia has changed my life in many ways – most of it – negatively – but it has also offered me a much deeper understanding of the struggle my mother faced with Parkinson’s dementia and Levy’s body, both of which have significantly affected her ability to communicate and often left her to fight for her words. (Unfortunately, my mother died of COVID-19 a few weeks ago.)

Aphasia can be a painful and isolating condition. I’m glad Willis, it seems strong support system around him. I also hope that coverage of his situation will lead to greater awareness of this condition and compassion for those affected by it.

As for me, I may never return to “normal state,” but I’m sure I still need to write countless words, even if they can be a little unpredictable.

Bobby Dempsey is a reporting officer Draft report on economic difficulties and an employee of economic justice in Community change. Her work has appeared in Parade, Harper’s, The Washington Post and many other publications. Follow her on Twitter at @bobbidempsey.

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This article originally appeared on HuffPost and has been updated.

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