I don’t have aphasia. I can only speculate what it must feel like to live with aphasia, a language disorder that, after a brain injury, can impact talking, listening, reading, and/or writing. Without aphasia, I can turn my internal thoughts into spoken words instantly. When someone talks me, I can effortlessly understand their message (as long as it’s not about organic chemistry). Through my work as a speech-language pathologist (SLP), one thing is very clear to me: I take language for granted.
Language is like a strong beating heart or oxygen-pumping lungs. When it works as it should, its very presence should go unnoticed. As a flowing undercurrent, language allows us to create, to soothe, to vent. It allows us to speak into existence Shakespeare’s poetry, to calm our sleepy children with cozied-up story books, and to express our feelings about the current state of the Union. I understand what language is when language works, and I observe what language becomes when it is broken. I see what happens when words lose their meaning with aphasia. However, I have no idea how aphasia feels. How it feels on the inside of someone’s mind who is living with this language disorder. The dilemma is when you ask someone with aphasia to describe what it feels like to have aphasia, it is very hard for him/her to describe it due to the very nature of his/her disorder. I will do my best to describe how I imagine aphasia to feel, and later this month I will describe the unique perspectives from two men with different types of aphasia.
To me, aphasia might feel like this. Imagine a time in which you haven’t been able to think of the word you’re trying to say. It’s on “the tip of your tongue,” and it drives you crazy! The more you try to think of the word, the further away it’s pushed from your mouth’s grasp. Like when you’re cooking pancakes on Saturday morning, and you call to your husband unloading the dishwasher to, “Hand me the…the…the thing that flips the pancakes, you know, the…I know it starts with an ‘ssss’!” And your husband effortlessly replies, “Oh, the spatula?” Isn’t that feeling aggravating? This sort of disconnection from thought to word disrupts communication. Even more than a disruption to communication, it disrupts your connection to the person you’re talking to, even momentarily. Now imagine if that “tip of the tongue” feeling occurred every time you tried to say a word, inhibiting your ability to say even the simplest of things like, “I love you,” or, “Pass me the ketchup.”
Now, imagine a different phenomenon. Let’s call it the “tip of the ear” phenomenon. It’s a similar feeling to “tip of the tongue,” but this time it happens when you’re listening to someone speak. You strain to understand, like how it felt in 8th grade Spanish class when Señora Garcia asked you to hand her the “cinta” (tape), and you ended up trying to give her your “silla” (chair). You recognize the sounds and feel like you may have heard them before, but you can’t connect the sounds of the word to its meaning.
How would it feel if words lost their meaning? David Kessler, family practice doctor, yoga-enthusiast, and world-traveler, and Kevin Mills, retired architect, golfer extraordinaire, and self-proclaimed “Mr. Sushi” both had strokes. As a result, they both now live with this “tip of the tongue and/or ear” feeling due to aphasia. I have the privilege of helping people like David and Kevin every day. I get a front-row seat to their joyous triumphs as well as their sometimes crumbling disappointments. I humbly stand by their side as they move through the stages of healing. In honor of June being Aphasia Awareness Month, and with immense respect for the hard work of these two gentlemen, I am excited to share David and Kevin’s perspectives on living with this language disorder.
About the Author
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 boyfriend, spending time with her family (6 younger siblings!), and playing her flute in her local concert band. For more details about the C.H.A.T. Program, please call Kristen at 303-789-8126.