Therapy Team 6: Silent No More

John and I both face monumental pain on a daily basis relative to communication issues. It is the second biggest loss we have had in our journey. His stroke left him able to speak only two words.

[*See below for a description of the image to the left.]

Everyone knows how annoying it is to have a word on the "tip of your tongue" and not be able to recall the word for what you know you want to say. Imagine this: that is how all of John's speech was and still is, all day every day. Day after day after day. All day, every day, for twenty three years.

Although through the years he has improved, aphasia still occurs to some degree in his conversations. Maybe once every four to six weeks now, John will want to say something to me and he simply cannot find the words for what he wants to say. He is what is called Expressive Aphasic. He truly knows what he wants to say, he has just lost the word or words he needs. He has lost language.

When this happens, my job is to start guessing what he is trying to say. This guessing is a double edged sword. Once I guess wrong, his brain hangs on to the word I used and he starts repeating it. The speech pathologists call this perseveration. Thus he will repeat the wrong word and get frustrated because he is now saying the wrong thing. He knows he is saying the wrong word, he just can not stop the process. His brain has snatched a word it recognizes and keeps spitting it back out, inappropriately.

This process is as temper-trying for me as it is for him. All day, every day, I spend time guessing what he is trying to say. The patience required of me is vast. Sometimes I want to scream. This infernal guessing.

And no, he cannot write the word he is trying to say. He lost language. He can neither write it nor say it when it is lost.

One tool we often use to find a word for him is a pencil and paper. John can sometimes draw a picture of the word that he is trying to say. For example, one day I could not figure out what he wanted for breakfast. Finally on paper he drew a circle about four inches in diameter and a smaller circle in the middle. I recognized a bagel. He can be really creative with his drawings of concepts he is trying to get across to me.

I did not and cannot choose the fact that his communication is not at all like a normal person’s. My choice here is to let go of the angst of trying to figure out his intent. Sometimes when we have come to a dead end, to preserve my sanity, I have to just walk away and move on to something else. It is like trying to hold on to a just baked potato that is too hot. The pain of holding on is more intense than the lack of the potato for the moment. The best choice is to let it cool down a bit and then go back later to prepare it.

John did not choose this condition, either. He truly amazes me with his resilience and ability to let go and move on. It is rare when he gets frustrated. Most of the time he will just say, “forget it, later”. That is his way of saying, “forget it for now, we will try again later.” He has many of these shortened phrases that we both know the meaning of. He makes the choice to let it go, move on, and if he can figure it out later, so be it. If he can not figure it out, he forgets it completely and cheerfully.

The best device we both use for remaining sane in this non-verbal abyss is knowing that we can just let it go when we can not solve the puzzle. Fortunately, we know each other so well, and are such good friends, that most of the time we can discover the word he has lost. Here is where our “team” mentality comes into play again.

Over the years his speech has improved impressively. Every once in a while he speaks a word  that I have not heard since his stroke. His sentence structure is flawed, but you can hold a conversation with him. I listen to his speech with pride in my soul every day for every word he utters. He earned them.

He is a miracle: silent no more.

*Description of the image above: This is not an image of John's brain. It is a sample of what his may look like. It is actually an MRI of a patient with chronic non-fluent aphasia. The arrows point to the damaged area of the left brain that is typically associated with John's type of permanent speech issues.

If you wish to read the entire medical article where this image is from, click HERE.

 2014 Nancy Weckwerth