“Don’t judge a book by its cover” is a common expression that is familiar to most people. This phrase typically refers to physical appearance. It reminds us to look at a person’s character, not their skin color, hairstyle, clothing, or tattoos. Relationships are built by looking beyond what we see.
But have we ever considered looking beyond what we hear? We often evaluate people by how they sound. Take for example our impression of a person’s intelligence. Because a person’s thoughts are shared through the spoken word, we easily judge someone’s intellect through the words they say. If someone speaks with improper grammar, we judge: He’s not very smart. If someone speaks with slang vocabulary, we judge: She must not be well-educated. If someone struggles to articulate a complex thought, we judge: He must have a shallow understanding of life. However, the way someone talks is not always a good indicator of intelligence. In people with aphasia, language can no longer be used as an accurate reflection of a person’s intellect.
Aphasia impacts a person’s ability to access, use, and/or understand language. If we were to judge a person with aphasia by his or her language “cover,” we may think that this person lost intellect. In general, this is not the case with aphasia.
Aphasia looks different for every person. Let’s think about how several people with different types of aphasia might ask a clerk at a grocery store about the location of an “avocado.” For one person with a milder type of aphasia, he may not be able to think of the exact word “avocado,” but he can describe it in full sentences to the clerk. He may say, “I can’t think of this thing’s name, but I am looking for a fruit that is green on the inside, smooth, and is used in guacamole.” The clerk would quickly understand what this man is asking for and would give him directions to the far end of the produce section (and the man would understand these directions). For another person with a different type of aphasia, he may accidentally say a word that sounds similar to “avocado,” and his grammar may also be incorrect. He may say, “I look fagado. Where fagado?” The clerk would have a harder time understanding him and might reply, “I’m sorry, sir. I’m not sure what you’re asking for.” This man with aphasia also struggles to understand language and may misinterpret the clerk’s response, leaving him feeling confused. Finally, a person with a different type of aphasia may have the concept of what he wants in his mind, but he may not have access to the word that pairs with the concept. In other words, he may be able to picture an avocado in his mind, but his brain cannot connect that picture to the word “avocado.” He may only be able to point to the produce section and with a puzzled face ask, “Well, um? Wow. Please?” The clerk would not know how to help this person and would apologetically ask for clarification. Interestingly, this person with this type of aphasia would understand everything the clerk said and then may feel stuck not knowing how to get his point across.
David Kessler, a family practice physician, yoga-enthusiast, and world traveler, has this last type of aphasia, called Broca’s aphasia, following a stroke in 2016. His stroke impacted the left side of his brain, the area that controls the right side of the body and the area in which language resides for most people. Even though David is only able to say about 10 words or phrases, such as “Hello,” “Thank you,” and “Yes,” he can still understand everything people say. In therapy, David is learning to reconnect meaning to words and can now read rehearsed sentences out loud.
Even though David cannot translate his internal thoughts to spoken words on his own, our communication is rich and robust. He is animated, hilarious, and kind. As a team, David and I bypass talking and use other means to help him express his message. David draws. He draws so well in fact that one time, he was able to communicate the message that his brother had recently left the United States to return home to Israel. When I give David three written choices, he can easily read and point to the choice that best describes what he is trying to say. David has expressive facial features and gestures. He can communicate a specific feeling by just a sideways glance or a twinkle in his eyes.
To get his thoughts about living with aphasia, I interviewed David using strategies such as asking close-ended questions (i.e., questions that can be answered with “yes” or “no”) and giving him multiple choice options. Through these means of communication, David expressed the following thoughts about his stroke and aphasia. “When I woke up (after my stroke), and my right side didn’t work, it was shocking.” Now that David has regained some physical function, he says that his primary goal is talking. As he works towards his goal, he says, “Some days are up. Some days are down. Getting better feels incredible, but it’s tiring at the same time.” He describes that his mind feels blank, without words, when he thinks. David says he still knows what he knows even without words.
It would be unfair and mistaken to judge David by his language cover. David has an intricate internal world filled with thoughts and ideas, hopes and dreams, and strong opinions. He is passionately motivated to regain the ability to talk in some capacity to more easily share himself with the rest of us. Until then, as his therapist, friend, and advocate, I hope others can better appreciate the meaning of aphasia, pause to imagine and empathize with a person with aphasia’s experience, and practice looking beyond what we hear.
Kristen Mascareñas is the coordinator for Craig’s exciting new aphasia program called the C.H.A.T Program (Craig Hospital Aphasia Therapy Program). Kristen has called Craig home for the past five years where she passionately helps people with language and other cognitive-communication disorders. When not at work, this Colorado native likes road trips to Breckenridge with her fiancé, spending time with her family (6 younger siblings!), and playing her flute in her local concert band. For more information about the C.H.A.T. program, please contact Kristen at 303-789-8126 or at KMascarenas@CraigHospital.org