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.