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Spreading Aphasia Awareness One Social Distancing Person at a Time … in the COVID Age.
I am a three-time stroke survivor, a national aphasia advocate and speaker. My last face-to-face presentation was Thursday, March 12, 2020 in Tallahassee, FL. Driving home that night we listened to the news and realized that the world, as we knew it, was about to end. We stopped at the local supermarket that night to see how things were doing. Everything looked fine, no rush and no crowds. We didn’t buy anything either. It was late and we went home.
We watched the news through the weekend and could see that things were going to be bad. I went back to the store and found that the toilet paper (and many other needed items) were all gone when I got there. That was the beginning of sheltering in place that started officially on Monday, March 16, 2020.
That week everything stopped; restaurants, gyms, retail stores, schools, universities, rehab facilities, stroke groups, with many businesses working from home. The local hospital Auxiliary (I have been a member there for 8 years) were all furloughed until the virus can be checked.
I had been using a treadmill at the local Planet Fitness for several years but the gym was off limits too. I started walking again in the neighborhood. I could see that there were many more walkers and some I had seen regularly at the gym. It looked like everyone was starting to adapt to their “new normal” lives as best they could.
Walkers would always wave and greet as they went by; it is a neighborly thing to do. I can read while walking, and the other walkers started wondered what I was doing. I had plenty of articles, clips, and pens with me so I probably looked “busy” and drew their attention.
I started to get (friendly) questions like; “What are you doing? How can you read while you are walking? What are you reading? Are you a doctor, a lawyer, a teacher? Are you grading papers? Are you an inspector?” People are incredibly social and they wanted to know what I was doing and why!
Since my stroke, my “impossible mission” (“If you choose to accept it” as the movie says) is to educate the country about stroke and aphasia from the perspective of a person with aphasia (PWA) who had lost and regained one’s language.
Once my events were cancelled, I realized that talking with my neighbors was the next best thing to do. I got a chance to talk to a new “crowd” again, this time just one social distancing person at a time.
While on my walks, I saw the opportunity to engage (and educate) about 30-35 people a day about stroke and aphasia. It was clear that they were curious and wanted to know more about it. I saw many of the people twice a day and 5-7 days a week too. In many ways it started to sound a lot like intensive therapy with my own ICAP (Intensive Comprehensive Aphasia Program)!
I would always wear one of my Stroke Diary t-shirts…plus bring copies of my business card (Have Aphasia…Will Travel) and the National Aphasia Association (NAA) Aphasia ID card with my name on it. I would also give them a car magnet too (if they were really interested!).
I gave my “elevator” talk about stroke, aphasia and recovery. They were amazed by my recovery and wanted to know more about the brain. All of my “new friends” also had their own stories to tell, and I was glad to hear them too…often with stories of heart, stroke, and other major illnesses in their family.
Sharing stories is always therapeutic and I didn’t talk aphasia all the time either. I told them that I am also a national volunteer for the AHA/ASA organization, and we talked plenty about heart issues (open heart, TAVR), strokes (ischemic, hemorrhagic, TIAs), plaque, kidney (renal stenosis) and more.
In addition to my regular walking, I started my “Aphasia 101 class” every Sunday morning during Aphasia Awareness Month from 7:00 AM to 9:00 AM at my “booth” on the sidewalk. It rained one Sunday (yippee!) but the other three Sundays brought a good amount of people who stopped by my booth.
Many people walked (and some drove) with questions and family experiences of stroke…no one knew anything about aphasia other than a teacher, a nurse, and a man whose brother had a stroke and aphasia. There were many people in their family with stroke (and some who were described as “couldn’t talk”) but none knew that it was called aphasia.
Trying to build a relationship with total strangers in the middle of this terrible virus is an interesting experiment in communication. It is not unlike a person with aphasia who has a difficult time communicating with people who are unaware of aphasia and what it means. No one wants to talk, meet, understand or build a relationship with a person with aphasia until one learns what aphasia means.
Other than experiencing aphasia yourself or someone in your family (or a speech therapist), talking with your neighbors is another way to educate people about aphasia even with social distancing in this new world of COVID isolation. Please contribute to the National Aphasia Association (https://www.aphasia.org/), Take care! Tom B