The Word Escapes Me: Aphasia Analogies

Aphasia is like trying to get around in a foreign country where you can’t speak the language. It’s like spending 24 hours a day with your words right on the tip of your tongue. Aphasia can feel like a prison. Analogies, metaphors, and similies are helpful comparative literary devices meant to explain something unknown. There are plenty in the pages of Ellayne Ganzfried and Mona Greenfield’s new book, The Word Escapes Me.

The Word Escapes Me

The Keyboard Analogy

On page 86, Yvonne describes life after her stroke, pulling in a story about a damaged computer keyboard to explain life with aphasia:

I recently had an incident that serves as an analogy for my stroke experience. I decided to clean my computer and saturated the keyboard with Windex. Bad move. From then on, every time I tried to type certain letters, I got nothing but a blank screen. No matter what I did, it wouldn’t respond. The keyboard looked fine, but it did not work right. When I’m sitting down and silent, I look fine, like there’s nothing wrong with me … When I try to speak, I’m outed as having trouble talking.

She ends her story with a powerful simile: “I am like a computer screen trying to reboot … My computer brain gets jammed, locked, frozen like my laptop’s broken keys.”

The Foreign Country Analogy

I once spent three weeks by myself in Norway, trying to get around Oslo without knowing the language. One day I needed to take the bus to another part of town. No one could understand my questions about the bus system. I ended up getting yelled at for misunderstanding the ticketing system and getting off three miles from where I was trying to go. I spent my whole day walking home, never reaching my intended destination.

That type of frustrating experience is described so clearly by Lee on page 81:

When Lee is asked about how aphasia effects him, he says, “Everything.” It is the single biggest problem that effects everything he does that requires speaking or writing: shopping, asking for things, asking for directions, giving directions, asking and answering questions, making comments.

Travel frustrations are solved by the time you head home. Aphasia frustrations last a lot longer and permeate your normal, day-to-day life at home. By tying the individual experience of aphasia to the common experience of travel, the listener understands a little better what it is like to walk in the other person’s shoes.

The Prison Analogy

The book opens with Ellayne Ganzfried’s essay highlighting the ability to still think in the same way before aphasia but communicate differently after aphasia. On page 24, she discusses this aspect of the condition:

Because people with aphasia can think as they always have but have lost the ability to use language to convey their thoughts and/or understand others, they often use the word “prison” to describe their condition. Imagine the frustration of knowing what you want to say but not being able to say it and/or saying things that others cannot understand.

Life in prison has everything and nothing in common with life outside that restrictive space. A person still sleeps, eats, and thinks, but they do so without any of the comforts and freedoms that define life outside of prison. Unlike travel, it isn’t your choice to leave. You have to finish out your sentence, whether it is for a short period of time or for the rest of your life.

Analogies, metaphors, and similies are helpful doors to give people without personal experience insight into life with aphasia. How would you describe aphasia to someone who doesn’t know anything about the condition?

This is the fourth installment of our online book club. You can still read the first post, second post, or third post in the series, and you can enter the conversation at any time.

Join this online book club! Copies of The Word Escapes Me can be purchased through all online book retailers including Amazon. You can also purchase the book directly from Balboa Press, and discounts are offered on bulk orders.

Image: Ozzy Delaney via Flickr via Creative Commons license

Comments

6 Comments

  • Jean Milliken
    March 14, 2017 at 9:12 am

    My husband said when he entered into Aphasia — “it is like standing outside the window of a house and watching everything that is happening in it … and you can’t enter in.” He lived in a bubble of silence for 7 years. He lost comprehension to speech from others for 6 years. He sought God to fill his soul through reading. Until the brain was affected — slowed down — and reading was a struggle. Your soul is never sick — only the human body wilts, decays, and is inhabited by disease that is the unwelcome guest to your life path. He wrote in his journal a paragraph each day. He copied words or phrases — disciplining himself to “connect” with the world. Until, the ability to write was scrambled in the brain as well. He willed himself to stay clean by showering and shaving each day. Until, his human body was dsyfunctioning and short circuiting with low level seizures on the right side. He had to submit to being helped in daily routines — eating, showering, getting dressed, walking without falling (fell 5-7 times a week). He was a fighter. Aphasia was the early part of the disease. It lasted 7 years. The total disease (FTD– Frontal Temporal Degeneration) lasted 10 years. A long obedience — to the edge of heaven.

  • Karen S
    March 14, 2017 at 12:01 pm

    My father used to refer to my mother as “The Supreme Communicator”. She wrote poems, kept in regular touch by letters or phone with family and friends, even those that others had lost touch with, made friends with wait staff and cashiers, greeted new neighbors, communicated with visitors who spoke no English, led motivational seminars and choirs, was constantly researching, and verbally showed her love and emotions continuously. I once told her I wasn’t sure if she was talking to me or to herself because she rarely wasn’t talking. Her severe stroke 1 1/2 years ago changed all that. In addition to being paralyzed on her right side and incontinent, she has severe aphasia with some apraxia. During this time her speech has deteriorated from us being able to understand some of what she said to her just sounding like she’s panting or gargling. She got three intensive weeks of therapy at the start at a great rehab facility but was discharged. We brought her to a skilled nursing facility thinking they’d continue rehab for at least a few more months but they cut her off everything after just a few days. I’ve had to fight continuously to restart speech therapy, but the SLP’s keep cutting her off as soon as she makes some progress and even though we’re paying privately, and in between she always relapses completely. She doesn’t seem to realize, or remember, how hard it is for us to understand her and how important yes/no’s and making descriptive gestures are. Before the stroke I spoke with Mom almost every day by phone. My parents had an incredibly loving 67 year marriage but Dad eventually couldn’t stand listening to her panting noises so didn’t even want to be around her anymore. He was nearly blind and couldn’t see her so could no longer understand anything she tried to say. When he died last year she couldn’t even contribute any of her thoughts to the eulogy. My heart breaks every day for her but I don’t know what else to do for her.

  • Barbara M Waters
    March 14, 2017 at 6:28 pm

    I once was extremely articulate, not anymore. I struggle to find the most basic words sometimes. The reason that I am able to write this email as well as I am is that my Kindle has predictive text, providing me with the next words that my brain typically would not. I have the same difficulty in speaking as I do in writing but there is no predictive text for speaking. This is the result of anti-convulsant medicine Topamax.
    For me aphasia is like my thoughts come through at regular speed, but because it takes me time to find my words, my speech or writing cannot keep up with my thoughts. I tend to leave out information, unintentionally, not realizing that while I thought it it was something that didn’t get into words because I was still trying to express the thought before.
    This just took an incredible amount of work and I exhausted. My aphasia is not as apparent in this because I had no time constraints on this.

  • Cindy
    March 14, 2017 at 6:36 pm

    I have Primary Progressive Aphasia.
    No longer conversation – a few words.
    I’m thoughts and personality in lock for
    brain – wisdom and humor. Frustration!

  • Cindy
    March 14, 2017 at 6:40 pm

    I have Primary Progressive Aphasia.
    My thoughts and personality locked in brain, wisdom and humor. Frustration!

  • Mark
    April 17, 2017 at 1:41 am

    My brother suffered a massive cerebral stroke, he was on Coumadin and they could not operate because blood too thin. Administered vitamin k and other experimental drugs. 12 hours into stroke surgeon said if we do nothing he will die and if we do surgery he might survive but still good chance of dying. He survived the surgery. He can not speak, global aphasia, he can’t write, he can’t read, and he lost his right side vision. The surgeon actually told our family he (surgeon) would rather be dead than be my brother. He had 3 college degrees and now he can barely function. He doesn’t even understand that he had a stroke…he fully understands his post stroke deficits and goes thru severe depression with suicidal thoughts and actions. My wife and I have given our entire lives to support him physically and mentally. He’s not able to articulate his thoughts…but if he could he would tell you life is a struggle. This is the most difficult thing we as a family have ever had to deal with.

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