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