Poetic Expressions of Living with Aphasia

Trying to understand how it feels

Dr. Jackie Hinckley

Jackie Hinckley of Florida has remarkable empathy for people with aphasia. As a professor of speech-language pathology at the University of South Florida in 2011, she put together an online aphasia simulator to show people what it feels like to have aphasia. She continued this outreach through the nonprofit group Voices of Hope for Aphasia, where she was the executive director. VOHA sponsored a “poetry bash” in March 2018. The poems on these pages are from that event; the opening essay is by Dr. Hinckley.

was standing in the hallway of the family who was hosting me in France. I was an exchange student and spoke only a few words of French, and they didn’t speak any English. All I wanted to do was let them know that I would be going out for a couple of hours, and then would return.

But I couldn’t do it. I couldn’t think of a single word in French that could help me convey this message. I stood there feeling helpless and a little stupid. I couldn’t imagine what they thought of this strange girl standing in the hallway. What was she trying to do? What did she want?

I knew exactly what I wanted to say, but I couldn’t come up with any word that would help me express that message. I couldn’t write it down either. Finally, I resorted to pointing out the door, and then showing with my finger that I would come back to the place I was standing in. They seemed to understand.

The shock of being totally unable to communicate such a simple message has stayed with me for decades. I’ll never forget standing in that hallway, having no voice, no words.

I don’t know how similar that experience is to having aphasia, but it’s the best I can do to try to understand. I’ve carried that feeling with me as I’ve come to know hundreds, maybe thousands, of people with aphasia over the decades.

I’ve also tried to understand the experience of aphasia by reading books written by people who have lived with it. Living with aphasia has been variously described as “scaling a mountain,” “a journey to stroke-land,” and “chaos due to the conflict between how people with aphasia view themselves and how others view them.” In his stroke memoir My Year Off, Robert McCrum wrote “Sometimes I feel like the pilot of an aeroplane who, on looking over his shoulder in the cockpit, sees his tail-plane and the end of his fuselage suddenly blown away, but who finds, amazingly, that although his plane has gone into a ‘graveyard spin,’ somehow it has not crashed.” These personal descriptions help me get a glimpse of the experience of aphasia.

People with aphasia were given the opportunity to express their experience through poetry, thanks to the organization Voices of Hope for Aphasia. Some people think of poetry as a very difficult language task. But we found that some people with aphasia were very eager to try different forms of poetry. By being unable to select any possible word, the singular word that is most important is likely to come out.

Aphasia’s Got Talent: Poetry Bash took place in March 2018 in St Petersburg, Florida. Here are some of the poems shared that day. They help us all understand what it might be like to have aphasia.

Voices of Hope Aphasia will have another poetry bash in fall 2019.

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