Aphasia: 10 Insensitive Reactions to Someone Who Has It

Aphasia is not having a senior moment every once in awhile. Rather, aphasia is the loss of ability to comprehend or express speech caused by brain damage, one of negatives for winding up with a malfunctioned brain from stroke and Traumatic Brain Injuries (TBI). Sometimes you get better with aphasia from stroke or TBI, but few get better completely. I know because all ten happened to me.

I make a self-deprecating joke with aphasia when I often say, stumbling to find the exact word, "This here is aphasia in action," naming it before people think I'm slow. But naming it or not, aphasia really sucks. I've had it April, 2009, because I had a stroke.

I've come up with a list the insensitives among us say when, after a few seconds, they lose my thread and start talking about something else. I want to say, "C'mon, guys, can't you wait while I think of the word," but I never say it. Why bother? I saw that now. But early on, I wanted to change the world's thinking about aphasia. What a dud I was.

Here's the list of the top ten reactions people have for those with aphasia:

1. I have trouble understanding you

This statement cuts right into my soul. You're speaking English. I'm speaking English. "So what's the problem?" I say silently. To my ear, it sounds good enough, but to the person's ear, it sounds incomplete, which it probably is. But still....

2. Supplying the right word

Oh, no! I want to be part of the conversation, and if you'd just hang on for a sec or three, the word will come to me. Or they won't.But my aphasia is different from some, because the word that I'll come up with, though in the ballpark of correctness, a word I've rarely used before. Example, we took a ride to the coast and when we arrived, I described the houses as "ramshackle." I never know what's going to come out of my mouth because I lost the filters when I had a stroke in 2009. 

3. People finishing your thought

I can honestly say, "What the F is wrong with them?" Sheesh. Give a gal a chance. They think they're doing me a favor, but the exact opposite happens. I resent them, and fairly soon, I want to leave the room. 

4. Speaking sentences that NO ONE understands

I've improved, but early on in the first three I spoke sentences that even after I was finished, I  couldn't understand. People just stopped listening soon after. 

5. Making up words

I used words, back in the beginning, that weren't really words at all, like "clockfer," "greenac," and "withand." I know that I said them because early on (wanting to escape the aphasia which I still have not done completely), I used to tape conversations on my phone and recognize the errors. I was embarrassed but given the condition I was in, a little empathy please?

6. Inability to understand someone else's conversation

In the first year after my stroke, I went to an art lecture on Picasso, and with the visuals right there in front of me, I had severe trouble following that talk. I hadn't heard of aphasia, but I'm satisfied that other people had trouble following other lectures at first with strokes, too. But people were annoyed that I "didn't get it." Remember when I said aphasia sucks?

7. Pronunciation suffers

On the first round, even after eleven years, I still, like a little child, say "bisquetti" for spaghetti when I don't remember to slow down my speech. It is also useful to say every part of the word in isolation and put it all together, slowly at first. Thus, I had the inability to pronounce words correctly, and some words not due to muscle weakness or paralysis because I could pronounce them if I slowed the heck down. Some people laughed. It wasn't funny though.

8. Loss of reading and/or writing skills

In some patients with aphasia, reading and/or writing skills (usually both at first) are lost. This means that the patient is no longer able to comprehend written language or even express themselves through writing, all of which are necessary to communicate to emotion, language, and information using symbols, and even emojis. You can imagine what that loss does for self esteem. They have to start over. I'm extremely fortunate, as a writer, I didn't have that affliction. 

9. Spontaneous speech is rare for aphasiacs

I gave a speech to a stroke support group a year after the stroke in the Hershey Medical Canter in Pennsylvania, and though it appeared spontaneous, I simply read off the bullet points so fast, it seemed that the neural pathways were on fire for somebody in the back row who was simply listening and not watching the presentation. Spontaneous speech, also called off-the-cuff, is speech that happens without any planning having taken place, and the majority of aphasics, though they want to do it, simply are unable. 

10. The facial expressions

I saw the frowns, and sneers, when I talked to people, even now, if the minds are already made up that this is a person (me) whom they won't understand. I detest it though I can't have any control over so I don't worry about it like in the early years. I can try and talk slower and who cares what they think? If they call me slow and dimwitted, who cares? 

Alexander Hamilton said it best: "We must make the best of those ills which cannot be avoided." Hamilton may have been talking economics, but I'm talking stroke and TBI. Different causes; same result. You have to learn to live with it! Now I say it, but in the early years, I was totally unforgiving. Here's another famous quote: "It's so hard being a person," said by yours truly, Joyce Hoffman, in April, 2009.

The Coronavirus Ain't Leaving So Fast

In a recent Time article entitled Nearly Half of Coronavirus Spread May Be Traced to People Without Any Symptoms by Alice Park, The Annals of Internal Medicine concluded "at minimum, 30%, and more likely 40% to 45%," were spreading the virus to others without realizing they were also infected at all. There is a name for those people without symptoms (fever, fatigue, shortness of breath, coughing) to the COVID-19: asymptomatic.

Eric Topol and his co-author, Daniel Oran hunted for studies that included asymptomatic people and focused on different groups of people tested for COVID-19 worldwide. Among others, included were:

• More than 13,000 people in Iceland who volunteered to be tested for COVID-19
• Residents of Vo, Italy
• Passengers on the Diamond Princess cruise ship where an outbreak was witnessed
• Visitors to homeless shelters in Boston and Los Angeles 
• Prison inmates
• College students
• Nursing home residents in King County, WA.

Follow-up testing of those participants showed that only a small fraction who were asymptomatic when they tested positive on the first go-round went on to develop symptoms, permitting the researchers to choose between people who were pre-symptomatic (who went on later to develop symptoms) and those who are accurately asymptomatic and test positive for COVID-19 but never develop obvious symptoms. For example, among the more than 2300 people tested in the Vo population, 41% who had no symptoms when they tested positive and never developed symptoms over a 14 day period.

Topol and Oran concluded that while they may not be showing any signs of illness on the outside, asymptomatic people are still transporting a dangerous and infectious virus that they can spread to others.
"The virus may be damaging the bodies of asymptomatic in other ways," says Topol. Among the 331 passengers aboard the Diamond Princess ship who tested positive but did not have symptoms, it was revealed that 76 CT scans of their lungs showed signs of lung tissue damage typical of coronavirus infection.  

In another study, this one in South Korea, that studied 10 asymptomatic people from a group of 139 COVID-19 patients and warranted similar findings. The lung was affected in all asymptomatic patients, and researchers decided it was necessary to extend the evidence of COVID-19 testing.

"Given that public health officials aren’t testing the entire population, there are still huge gaps in understanding what asymptomatic disease," Topol says.

Then there is the question of how long asymptomatic people are infectious. No one for sure, but wearing masks in public settings means less infection from those who are asymptomatic. So does social distancing and washing hands frequently given the numbers of asymptomatic people.

“If even a portion of the 100 million Americans who have a smartwatch or fitness band are involved, then we could go in and do studies for information we are missing now—antigen testing, antibody testing and we can look for transmissibility,” says Topol. “The priorities during a pandemic are absolutely to look after the sick. But we also shouldn’t miss how important this area of asymptomatic spread is to understand. For every one person who is sick, there are a whole lot of people who have the virus and don’t know it.”

So what does all this mean for the public? Remember the numbers: "at minimum, 30%, and more likely 40% to 45%." Scary though it is, I, for one, won't be going to the beach where people sit willy-nilly next to each other. No public settings at all for me like concerts or sports events that may open to the public, until much more is known about asymptomatic people. You can't spot one because they're like the rest of us, except they're harboring a death-defying  disease silently.