Like Bruce Willis, I Have Aphasia. Here's What Life Is Like With This Incurable Disorder.

Bruce Willis revealed in late March that he's retiring from acting due to aphasia. (Photo: VCG via Getty Images)
Bruce Willis revealed in late March that he's retiring from acting due to aphasia. (Photo: VCG via Getty Images)

Bruce Willis revealed in late March that he's retiring from acting due to aphasia. (Photo: VCG via Getty Images)

When news broke on March 30 that Bruce Willis is retiring from acting (at least for the time being) because of aphasia, it may have been the first time many people had heard of the condition. For me, however, aphasia has become a core part of my constant reality, affecting me every day, all day long.

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

Afterward, the physical signs that I had a stroke were obvious. The fact that I couldn’t use my right hand at all was impossible to ignore. In the immediate aftermath, trying to regain my physical strength and abilities took all of my mental focus. I considered myself lucky — and I was. I didn’t lose my ability to walk, and I could still speak.

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

Soon, though, I had to get back to work and try to resume my normal routine. I had lots of things to write. Deadlines loomed. Assignments needed to be finished.

That’s when I began to realize some of my words seemed to have gone missing.

I learned I have aphasia, which sounds like a cool new lipstick shade or perhaps a trendy nightclub. Instead, it’s what happens when I struggle to think of words that seem forever stuck on the tip of my tongue, just barely out of reach.

While aphasia is referred to by various medical sources as a “condition” or “disorder,” it’s also commonly listed as a symptom of another condition because it often occurs as a result of a stroke, brain tumor or other issue related to the brain.

Temporary aphasia can happen due to a mini-stroke, seizure or severe migraine. Long-term aphasia, though, is generally considered incurable and permanent.

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

Still, I know the brain is a mysterious wonder that often acts in unpredictable ways, so I hold out hope that eventually, some of those lost words may sporadically reappear, like spring flowers emerging after a long winter. Meanwhile, I’m in a murky brain fog.

"As a writer, words are my lifeblood, so when they went missing, it was a cataclysmic shift in my world," the author writes. (Photo: Courtesy of Bobbi Dempsey)

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

As a writer, words are my lifeblood, so when they went missing, it was a cataclysmic shift in my world. But I had to learn to adapt to ― or at least tolerate ― my new reality.

Often, I’ll manage to write a first draft in a sort of blissful ignorance. I’ll type along at a decent pace and come up with suitable alternatives for the words that escape me. Then I go back to proofread what I’ve written. It’s then that I might realize that I’ve typed “much” instead of “must,” or that the phrase I intended to use somehow became something completely different and unrelated.

Always one to look for a silver lining, I tell myself the random jumble of words makes my writing more fun. It adds a little bit of surprise and whimsy. You never know what unexpected thing might appear next! But I realize that’s the kind of spontaneity my editors would prefer to do without. So my writing process ― already hampered a bit by the lingering issues with my hand ― further slows down as I compulsively double-check and triple-check every sentence, looking at each word with laser focus, hoping I’ll be able to spot any that don’t belong.

Painstaking as that process may be, it’s much better than the more frustrating scenario where the words won’t come at all, which happens way more than I had hoped it would.

Struggling to find your words when you are writing is tough enough. It is significantly more frustrating ― and embarrassing ― in situations where you must speak. I already suffered from social anxiety and a severe fear of public speaking even before aphasia entered the picture. Now the thought of speaking in public is positively terrifying.

As a writer, words are my lifeblood, so when they went missing, it was a cataclysmic shift in my world.

In the past, I would occasionally summon up the courage to speak on panels at writers conferences or participate in media interviews about stories I had written or topics I cover. Today, I almost always decline those opportunities because the likelihood of finding myself grasping for words or stumbling through extended awkward silences causes me too much stress.

I envision attempting to do a presentation at a conference, only to have it quickly become way more of an interactive experience for the audience than anyone had planned as I try to act out what I’m trying to say or drop visual clues, like a bad version of charades.

The ability (or inability) to communicate affects every aspect of daily life. My anxiety increases before I have to make a phone call, attend an appointment or social event, or navigate any other situation that will require verbal interactions. Friends and loved ones are supportive, often pretending not to notice ― or joking that this happens to us all as we get older ― and they’re extremely patient while waiting for me to come up with the words I want to use. But it’s frustrating for everyone involved ― and more distressing and embarrassing in situations involving strangers who aren’t aware of my condition. It has gotten to the point where I often just avoid interactions requiring me to speak.

So I have great empathy for Willis, who was reportedly finding it increasingly difficult to remember his lines. I imagine he experienced great distress at having to make repeated attempts to get through his scenes, trying, take after take, while those around him could do nothing to help.

Having aphasia has changed my life in many ways ― most of them negative ― but it has also offered me a much deeper understanding of the struggles faced by my mother, who had Parkinson’s and Lewy body dementia, both of which significantly affected her ability to communicate and often left her struggling for her words. (Sadly, my mother died from COVID-19 a few weeks ago.)

Aphasia can be a painful and isolating condition. I am glad that Willis seems to have a strong support system around him. I am also hopeful that coverage of his situation will lead to increased awareness of this condition and compassion for those affected by it.

As for me, I may never be totally back to “normal,” but I’m confident that I have countless words yet to write, even if they may be a bit unpredictable.

Bobbi Dempsey is a reporting fellow at the Economic Hardship Reporting Project and an economic justice fellow at Community Change. Her work has appeared in Parade, Harper’s, The Washington Post, and numerous other outlets. Follow her on Twitter at @bobbidempsey.

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This article originally appeared on HuffPost and has been updated.

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