Finding the Right Words When a Stroke Leads to Aphasia

“Excel, bell.” Pause. “Excel, bell.” I’d called my spouse, Mark, from a training I was attending in an adjacent state, and he just kept repeating those same two words. Clearly, something wasn’t right, but I had no idea what.

Like a lot of medical diagnoses, until something impacts you or a loved one directly, you may never have heard the term before. Such is the case with aphasia, which is what Mark lives with permanently since it turned out his speech difficulties were the result of a major stroke affecting the left side of his brain.

So, what is aphasia (pron. uh-fay-zhuh), this odd word that sounds like a fancy dessert? There are a number of different types, but simply put, it is the loss of ability to find words (expressive) or process incoming information (receptive) as a result of damage to the brain. In Mark’s case, the stroke caused both expressive and receptive aphasia. According to the National Aphasia Association, more than 2 million people in the United States have aphasia, and “a person with aphasia may have difficulty retrieving words and names, but the person’s intelligence is basically intact…it is the ability to access ideas ad thoughts through language – not the ideas and thoughts themselves – that is disrupted.”

For Mark, aphasia means, among other things, he has a tendency to reverse or confuse pronouns, family relationships, directions, days, time, holidays, and other daily experiences. The expressive aphasia creates word-finding difficulty, so he plays what he refers to as “roulette” in his head until he comes upon the word he is looking for, and if he can’t locate it, he substitutes a synonym. But substitution is not his preference. He doesn’t want a “good enough” word; he wants the precise word he’s seeking. So sometimes, we make up games so I can lead him in the right direction without providing him with the answer, unless he asks.

Two years of challenging work in speech therapy with an excellent speech therapist have resulted in far fewer rounds of these so-called games, but they are still with us in some way every single day. He says, “It’s upstairs” and means it’s in the basement. He tells me at bedtime, “I’ll do that today” and means tomorrow. Sometimes he catches himself, sometimes he does not, and some days are easier than others. It’s our reality, and we approach it as partners. Although I translate this new language quite quickly these days, I do sometimes forget that others don’t until I see their puzzled looks.

The receptive aphasia is its own separate challenge as Mark works at processing incoming speech. For example, the subtle nuances of incoming language can be completely lost on people who have aphasia. The brain, especially soon after an injury, can process things quite literally. Idioms most of us don’t even think about, such as “It’s raining cats and dogs” would have some people with aphasia picturing actual cats and dogs pouring from the sky. And I challenge you to explain these sayings to anyone; it’s not easy!

Also, while aphasia is not a hearing issue, Mark says it’s difficult for him to follow conversations with people who speak quickly, so he lets them know he needs them to slow down and speak clearly. Slowing down is not easy for many of us to do, though, given our fast-paced, caffeine-fueled society. And the invisible aspect of disabilities can confuse people or lead them to cover their own discomfort by saying, “But you look just fine,” which is understandable, yet not helpful. For those of us with invisible disabilities, it can feel invalidating to hear that our internal struggles somehow aren’t quite real because of our outward appearance.

Mark can still read and write, but at a much slower pace that has improved over time. He likens his days to a mental marathon as he works to understand the usage and distinction between words such as “before” and “after.” Breaks need to be taken throughout the day to rest the brain, and his aphasia becomes more apparent in the evening, so we try to accomplish anything mentally taxing earlier in the day.

The stroke blindsided us because of Mark’s fitness lifestyle and assumed lack of risk factors. But after the critical care ended, and he moved past rehabilitation and the flurry of speech therapy and medical appointments, we started the process of figuring out how to adjust. It’s popular these days to talk about the “new normal,” but I think of it as our “new not-so-normal.” Every day brings unique challenges, and really, we’d just like our old lives back, thank you.

It seems we reside in this neither here nor there place while we continually try to adjust to our circumstances. But we do keep moving forward, working together to figure it out and find some measure of contentment…with fewer words, yet greater understanding.