Lessons from People With Aphasia

What the World Can Learn Right Now From People With Aphasia

Three participants broached a profound topic during last week’s online Aphasia Cafe chat. The rest of the world is finally catching up to what people with aphasia have felt since their diagnosis. The isolation, the uncertainty, the fears of the future, the hope.

We realized how much the world can learn right now from people with aphasia who understand the profound effect separation can have on people—whether that separation is being left out of conversations due to aphasia or social distancing due to a virus.

Learning to Navigate Isolation

Steve kicked off this thought midway through the chat. He pointed out that the isolation that the world is feeling at this moment is something he has been feeling since he was diagnosed with aphasia years earlier. Everyone immediately understood what he meant. They too had been left out of conversations, had people speak for them, missed social events, or had daily life become difficult due to an inability to communicate easily.

While the details may be different, the emotion was the same: The world is continuing on without you and you can’t participate.

We may all be paused at home right now, but life is continuing. We just can’t participate in it.

Social Distancing by Accident

Trazana continued with that thought, pointing out the similarities between the social distancing happening today and the social distancing that accidentally builds when someone is experiencing aphasia. Aphasia can create distance between people if they allow communication difficulties to guide their relationships. Trazana mentioned all the friends and family who fall away because they stop visiting or inviting you to things.

At the same time, she pointed out that everyone is feeling this right now, whereas it’s lonelier to be the only person dealing with isolation while everyone else’s life remains the same.

Accepting the Newness

Michael and Chelda finally brought the conversation to its final, logical point: People without aphasia can learn a lot about how to navigate the world right now from people with aphasia. They talked about the idea of “accepting the newness,” an idea they learned from their friend. Rather than mourn the loss of “normal” life, it’s about accepting that this is life right now and how can we make the best of it?

To that end, Gabby Giffords, who has aphasia following a gunshot wound to the head, wrote an op-ed for USA Today about how to cope with fear during the pandemic. She bases her advice on lessons learned after aphasia.

In experiencing the worst — and in facing fear, the unknown, pain, and the deep desire to move forward — I have learned a lot about resiliency and what it takes to endure.

She tells us to trust in emergency workers and medical professionals and their ability to help. She reminds us to take our advice from the experts and support them in finding solutions. Plus, we need to rely on one another. We will get through this if we don’t let social distancing stop us from being a community, albeit in our homes.

And that is the greatest lesson people without aphasia can learn from people with aphasia: We cannot let the situation get between the relationships. We are stronger together, and we can help each other through anything.

Comments

6 Comments

  • Gail Richardson
    April 6, 2020 at 12:36 pm

    True – this is a great article – thank you

  • Tammy
    April 12, 2020 at 9:31 am

    My father is in ICU, clot to brain, only symptom is severe aphasia – speaking, writing, reading. Because of COVID-19 doctor wants to discharge him. I want to push for rehab. Not sure how to plead for this

  • Elle
    April 15, 2020 at 8:27 pm

    In isolation because of the Coronavirus my husband, who had a stroke 7yrs ago, feels no different. He is coping alot better than others and I have said to many of them ‘Welcome to our world’ and I think some of our family and friends actually ‘get it’ now. It may even bring us closer when we can finally get together.
    Another positive thing has been social media. There are so many visual things that can lift your spirits online during this time and my husband really enjoys the visual activities.

  • Ted Baxter
    April 22, 2020 at 11:59 pm

    A great and poignant article! Being a person with aphasia, I resonated with all 3 perspectives. Emotions and feelings – you can get used to it but you can also navigate yourself through it, learn from, and feeling good with the end result. Challenges, resiliency, growth and faith can really help. Thanks for sharing!

  • Marilyn A. Ladewig
    April 28, 2020 at 11:35 am

    Has anyone had or know of anyone who had an experience recently in ICU or critical care or in the ER who WANTED to communicate/speak but could not and the nurses/doctors could not help (either because they did not know how to, or did not know to contact and SLP, or did not know the patient was once verbal, etc…)? please contact me as I would like to discuss a possible research opportunity with you.

    Tammy, how is your father now?

  • JessicaLynn Myers
    April 29, 2020 at 10:09 am

    I only experienced Aphasia, production and reading, twice, during TIAs that lasted only a few hours. But it was ironic since I was a retired neuropsychology researcher who had specifically studied psycholinguistics after Broca’s aphasia.
    Now two years later, the aftermath has been improvement in my word finding ability but a time lag in my comprehension. I have lived alone and quite isolated for years, but this makes it worse because people mistrust me when I return to them later having thought through my response to an issue. I guess I sound competent but I’m not processing information fast enough to keep up in conversation. They don’t understand.

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