Like Bruce Willis, I have aphasia. Here’s how life is with this incurable disorder.

Bruce Willis announced his retirement from acting at the end of March due to aphasia. (Photo: VCG via Getty Images)

Bruce Willis announced his retirement from acting at the end of March due to aphasia. (Photo: VCG via Getty Images)

On March 30, when news broke that Bruce Willis was retiring from acting due to aphasia (at least for now), this was the first time many had heard of the condition. However, for me, aphasia has become an important part of my static reality, affecting me every day, all day long.

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

Later, the physical symptoms of a stroke became clear to me. I can not ignore the fact that I can not use my right hand at all. In the immediate aftermath, my mental focus took over in an attempt to regain my physical strength and abilities. I thought I was lucky – I was. I have not lost my gait ability, I can still speak.

Physical therapy helped me regain the strength and control of my right arm. Eventually, I held a pencil steady enough to write half-readable words and soon began to type again. At first, I was very comfortable using the keyboard no matter what kind of characters and icons appeared on the screen.

Soon, however, I had to go back to work and try to resume my regular routine. I had a lot of things to write about. The deadline is approaching. Tasks must be completed.

That’s when some of my words seemed to disappear.

I learned I have aphasia, which looks like cool fresh lipstick or trendy nightclub. Instead, that’s what happens when I have trouble remembering words that are always sticking to the tip of my tongue.

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

Temporary aphasia can be caused by a minor stroke, seizure or severe migraine. Chronic aphasia, however, is generally considered incurable and permanent.

The effect of my stroke on the frontal lobe damage to my brain – my type of aphasia – has been around for a long time. A few months after my stroke – after a “wait and see” period, there may have been a sign that my aphasia was temporary – doctors warned me that this was a condition I could live with for the rest of my life.

However, I do know that the brain is a mysterious miracle that often works in unpredictable ways, so I hope that some of the lost words will reappear from time to time, like spring flowers that emerge after a long winter. Meanwhile, I’m in the dark brain fog.

“As a writer, words are my lifeblood, so when they disappeared, it was a catastrophic change in my world,” the author writes. (Photo: Courtesy of Bobby Dempsey)

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

As a writer, words are my lifeblood, so when they disappear, it is a catastrophic change in my world. But I had to learn to – or at least tolerate – my new reality.

Mostly, I write the first draft in a kind of blissful ignorance. I will type at the right pace and come up with appropriate alternatives for the words that leave me. Then I go back to check what I wrote. Only then can I type “more” instead of “forced” or realize that somehow the phrase I intended to use has become completely different and irrelevant.

As someone who is always looking for a silver lining, I can tell myself that the random confusion of words makes my writing so much fun. It adds a little surprise and wonder. You never know what the next thing might be! But I feel that this is an arbitrary act that I want to do without my teachers. So my writing process – already somewhat hampered by problems that persist with my hand – is forced to double-check every sentence, double-check, and look at each word with laser focus, further slowing down in the hope that I can figure anything out. Not owned.

While that process can be very difficult, it’s much better than the frustrating situation where words never come, and it happens more than I expected.

Struggling to find your words when you write is hard enough. This is very frustrating – and embarrassing in situations where you have to talk. Even before Aphasia entered the film I was plagued by social anxiety and a severe fear of speaking out in public. Now the thought of speaking in public is positively terrifying.

As a writer, words are my lifeblood, so when they disappear, it is a catastrophic change in my world.

In the past, writers would occasionally summon the courage to speak at panels at conferences or to participate in media interviews on stories I wrote or topics I covered. Today, I always reject those opportunities because the way I understand words or stumble through extended awkward silences causes me more stress.

I imagine trying to create a presentation at a conference so that it can quickly become an interactive experience for the audience when trying to implement what I want to say or try to drop visual clues. Worst version of carrots.

The ability (or disability) to communicate affects every aspect of daily life. My anxiety increases before I go into a phone call, meeting or any other situation that requires attending a social event or verbal communication. Friends and loved ones are supportive, often pretending not to notice – or making fun of the fact that this happens to all of us as we age – and they are very patient until I come up with the words I want to use. But it is frustrating for everyone involved – and it is very distressing and embarrassing in situations involving strangers who are unaware of my condition. I have often come to the point where I avoid the contacts I need to talk to.

So I have so much sympathy for Willis that he is said to have a hard time remembering his lines. I can imagine that he had great difficulty in retrying, trying, and taking his shots when nothing could be done by those around him.

Aphasia has changed my life in many ways – most of which are negative – but it also gave me a deeper understanding of the struggles my mother faced with Parkinson’s and Louie’s physical dementia, both of which significantly affected her ability to communicate. And often left fighting for her words. (Unfortunately, a few weeks ago my mother died of Govt-19.)

Aphasia can be a painful and isolated condition. It makes me happy to be with Willis A strong support system Around him. I hope the news of his condition will lead to increased awareness of this condition and compassion for those affected by it.

For me, I can never go back to the “normal” state, but I still hope to write countless words, even if they are a little unpredictable.

Bobby Dempsey is a reporting colleague Economic Crisis Report Program And an economic justice colleague Social change. His work has appeared in Parade, Harbors, The Washington Post and many other outlets. Follow her on Twitter பி Babitempse.

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This article originally appeared on HuffPost and has been updated.

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