misunderstood

Misunderstood With Aphasia

People with aphasia are accustomed to feeling misunderstood when they’re struggling to find the right words. But Lauren Marks experiences a different kind of misunderstanding in her new book, A Stitch of Time.

She writes an essay explaining how aphasia makes her feel. She edits it, finding the perfect words for describing her state of mind. Then she starts showing it to friends, and their reaction is unexpected.

The Essay

Lauren explains in her essay that people keep wishing her well, stating that they hope she gets back to her old self soon. But Lauren has no desire to move backwards. She likes what she has learned about herself and the world due to her aphasia.

Moreover, she is upset that other people seem to only view her aphasia in a negative light. Yes, aphasia is keeping her from being able to easily communicate with others, but a lack of words is also shielding her from the ill feelings and fears she knows existed before her aneurysm.

The Hurt Friend

Her friend, Grace, reads the essay on page 133 and reacts poorly to Lauren’s words. She focuses on what isn’t there: gratitude towards the people who supported her. She is upset that Lauren sees their recovery advice as damaging instead of life saving. Grace is more disturbed that Lauren sees life after her aneurysm as a re-birth rather than an event she needs to move away from, back towards her old self.

Lauren writes on page 136,

Although I already knew my language could be wobbly, it hadn’t occurred to me that even after all that time on my own, selecting what I thought were the exact right words, my actual message could still be misunderstood.

The Confused Boyfriend

Lauren sends the essay to her boyfriend, and they speak over the phone after he reads it. He is confused over the way she explains how she sees the connection between words and ideas. Certain ideas don’t exist for Lauren without the accompanying words, and finding words means that unwelcome ideas flood into her head.

While he knows the essay is about Lauren and her aphasia, like Grace, he is frustrated at how little his presence affects Lauren’s experience. He wants to see his place in Lauren’s life reflected in her words, but Lauren is focused on how she is viewing the world around her; not the specific people who inhabit it.

Her experience with the essay is more confounding than upsetting, though she notes everyone’s reaction with interest. She is accustomed to being misunderstood when she chooses the wrong words; not when she chooses the right ones.

Have you ever been misunderstood when trying to convey your thoughts about aphasia?

Photo by Álvaro Serrano on Unsplash

Comments

3 Comments

  • Lisa
    August 10, 2017 at 3:57 pm

    All the time and I sad to read this, because it mean I not alone in all this. It mean others deal day to day with not even want to talk when people not listen OR they not Hear what we really saying. … Speaking to people take a LOT when you have Stroke and Aphasia. People always tell to me I sound Harsh. What I am to do with that ?? I doing MY best to just get word out most time, so they can learn to deal I guess, or move on.

  • Sonny Howell
    August 16, 2017 at 11:16 am

    The easiest thoughts can be lost in silence, or worse, a look saying, “Are you stupid, or, didn’t you hear me say that?” Not knowing that yes I did hear or see, but my Wernicke’s Aphasia will not understand what anyone is saying. I can speak. I can read, and I can write; so that must be your are backwards, dumb, or just stupid. It is causes me to withdrawn or want to hide in a cave, and stay away from the world. There are several things that keep me going. Please understand that I had the stroke almost four months now. So, no TV, radio, and a normal conversation is lost. But, as I said, several things that keep me going. I have learned to be a Ragamuffin for God, The play “Children with a lesser God” let’s how really big He is. Then the movie “The Butterfly Circus” gets me through all my small problems, and we can overcome anything because, “Our God is a big God”. I would be telling you a lie if I missed a good movie, or hearing people give a sermon or just a good study. In life there is a lot more that is to enjoy. I don’t know if I will never be a good writer like Hemingway, but I can read “The Old Man in the Sea” over and over, and even read it while sitting at the beach. So if anyone reads this and then mentions what they like to do that is not taken away from you because of Aphasia, then write and putting them down, and I will do the same. One day, I may have that book written like Lauren.

  • Jennifer Perez
    October 18, 2018 at 10:07 pm

    Living with a man who has aphasia due to a traumatic brain injury from a motorcycle accident has been challenging. People regularly assume he is stupid because he cannot articulate his ideas or convey his needs in forms to be filled out or other written materials. It has limited his potential to earn; however, we overcame that and he was able to obtain an independent limousine driver’s job, where communication is at a minimum. With that, we have been able to live a fairly normal life, albeit a life within certain financial constraints. Yet, we purchased a home and have enjoyed some normalcy. However, there are those who assume they can impose willful exploitation of him, due to their ignorant perceptions. We are experiencing this now after two people saw an opportunity to prey upon him because he is vulnerable. This has been especially emotionally devastating to him and to me, as his fiance. A coworker and her husband were plotting to remove me from his life so they could gain his trust and confidence to obtain control, through deception, over our assets and property. They were able to influence him because of the difficulties aphasia causes among couples — such as our fighting and my fatigue with always helping him with communications. Fortunately, I discovered this was being done to him at work, stopped it and we never experienced loss. But our fights caused him to ask this woman (who was all too accommodating to help him fill out a form) and it nearly cost us our relationship and extreme financial loss for him. These are things I never read about in aphasia forums.

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