Reporting From the Land of COVID-19 Aphasia
By Audrey Holland
I am a foreign correspondent, writing to my home country from a country I have never visited be-fore. I am visiting the land of COVID-19 Aphasia. The field that I report on is aphasia, particularly what is happening in the world of managing aphasia’s consequences. That is , the effects relating to getting on with reclaiming as much as one can following aphasia’s devastation and coming back to living with aphasia’s residuals as fully as possible. This mostly happens following completion of intensive attempts to deal with aphasia’s impairments. However, we are becoming increasingly aware that the whole life participation process also can and should begin during aphasia’s earliest phases.
This COVID-19 Aphasia Country is a pretty amazing place to be reporting from. Quite interesting and surprising things are going on here in relation to social consequences. Not only are some pretty exciting events happening for people with aphasia but for people with disorders like TBI, PPA and dementia. Aphasia groups and centers continue to be growing, clinicians in all of those fields are developing and using personalized approaches to management, families are being well-instructed into ways that benefit not only them but their loved ones.
To my way of thinking, one of the most important recent developments is that of online support groups, particularly in relation to aphasia. The Aphasia Recovery Connection (ARC) is the lodestar. But ARC is far from alone. COVID-19 Aphasia is very aware of ARCs importance, but an equally important thing is that aphasia groups across the country have also stepped up to the plate.
Why do I know this? Because, since what seems to be years ago, but was fact, probably was late March or early April 2020, I have been invited to attend online aphasia groups across the country, sometimes as a mystery Zoom guest (fun—especially since nobody requires me to wear a paper bag over my head or even a mask!). I just wanted to take the opportunity to share my adventures with you, since I find the whole experience to be wonderful, rich, and intensely informative.
I suspect when real life, face-to-face aphasia groups are able to meet again, members will feel a lot closer to each other. They will have been through this thing together! Rather than in a relatively bland and sterile common setting, members will also know a bit about each others’ kitchens or some other authentic personal space. Family and pets are inadvertently or purposively being in-volved, or just walking though (for example, people who had no idea that I was a cat mom now have this detail to add to their knowledge of me). And the pussycat example is instructive. I am not sure I would have ever considered it to be an important topic of conversation for me. But it is, and possibly for people with aphasia, such similar interests are worth sharing with their groupies both online and when we get back to real life again.
A significant other person is often necessarily involved in these online sessions. Often their roles seem to be to help in managing the complexities of online communicating. But far from being a problem, I sense that this is often a positive factor for both PEOPLE WITH APHASIA and their significant others. Everybody in these on-line interactions appears be truly helped and interested. And frequently, everybody appears to be enjoying and learning new things (for interested research-ers, this and other observations are producing a goldmine of interactions to be analyzed. If ONLY they are being archived, which I hope many of them are!).
I admit to being a card-carrying member of the Curiosity Club, which specializes in poking around and enjoying other people’s houses, not for their spaciousness or classy interior designs, or feature of their decor, but rather to get a greater glimpse into the real worlds of others. I caught this curiosi-ty bug while my colleagues and I were doing the basic groundwork concerning the sorts of activities that people with aphasia and their families engaged in every day that ultimately became the focus of the testing instrument CADL (Communicative Activities of Daily Living). I still have the curiosi-ty bug, and this new, inadvertent exploration into the homes of PEOPLE WITH APHASIA and fam-ilies, is not only fascinating for me but speaks of incredibly generous sharing on the part of fami-lies. Although I have been attending aphasia activities and groups, particularly at the Adler Center for years, I believe this foray into homes, intrusive as it might seem, simply speaks to the warmth and friendliness and openness of PEOPLE WITH APHASIA and families who understand that the more we share about each other, the more positive growth that can result.
So, for me, this opportunity has been a gift. I am a better person for it, if not necessarily a better aphasia clinician. But there is something far more important. COVID-19 has failed to dampen the enthusiasm and positivity that has long infused aphasia groups and interactions throughout the country. This online meeting phase has probably paved a way to design and shape distance learning for people who live in remote places, where they are miles from others with aphasia and their fami-lies, and who will experience a profound sense of isolation, when COVID-19 has mercifully left us in even an uncomfortable peace, and aphasia groups can again be in person (I was going to say “alive”. but that is far from true…these virtual groups are plenty alive). We have learned how to reach out and to help others far removed, and in need of help and support.
My hope is that one of the lessons of COVID-19 for our aphasia community is that we can begin to have a data-driven justification for online services for people who live in remote communities, and who need such support most desperately. This is critically important, along with providing such support to people with aphasia and families who are not geographically or otherwise able to attend aphasia groups or centers.
So, for me being here in COVID-10 Aphasia land has been a very positive and hope-filled experi-ence. What we appear to be learning is that online groups can continue to play an important role in helping people with aphasia, particularly those who live in remote regions, far from where appro-priate services can be easily accessed. Ever the optimist, I see a whole new horizon opening up in aphasia rehabilitation. We have been given the gift of an unforeseen pilot study!
Finally, what have I learned from my inadvertent and unplanned group hopping? Well on the most positive note I am thrilled by the resilience of aphasic families and their enthusiastic adoption of online groups. For me, it is a joy to observe an and an honor to be asked to participate, however sporadically. I also have been pleased to be reminded of how just like the rest of us people with aphasia and their families are. I sometimes tend to forget that, and make unwarranted assumptions about how aphasia is always on center stage for them. It ain’t necessarily so! Just like the rest of us , people with aphasia are frustrated by the pandemic, eager to get on with their lives, get over being bored, and get back to their previous lifestyles. Nevertheless, it has been thrilling to watch so many of them stepping up to the plate and living as fully as they can during these difficult times. I am grateful to the groups I have visited for permitting me to see hope, resilience, and normality in these difficult times.
Audrey L. Holland
Regents’ Professor Emerita
University of Arizona Tucson AZ