Book club at Montclair State aids survivors of strokes and brain injuries
The three members of the Aphasia Book Club had just finished their 12-week deep dive into Bryan Stevenson’s memoir, “Just Mercy,” a book that details the lawyer’s career defending people on death row, on this particular Tuesday morning.
Anita, Dominic and Austin, whose last names are withheld to protect their privacy, previously finished “My Stroke of Luck,” “The Beekeeper of Aleppo” and “The Boys in the Boat” and are now hoping for an easier read.
“I think the next time we want to have something lighter,” Anita said.
The Aphasia Book Club at Montclair State University’s Department of Communication Sciences and Disorders clinic started in 2017 and works to help patients who suffered strokes or traumatic brain injuries.
The book club was modeled after one at an aphasia center in California, where research showed that after patients suffered a stroke or brain injury, one of their biggest losses was the ability to read.
Rosemary Destephan, the MSU clinical supervisor, says that faculty members recommend the book club to clients who participate in individual therapy sessions, based on their assessments of whether the client has a reading deficit and whether it’s an area that they would like to work on.
If the patient agrees, they get to participate in the book club, which meets every Tuesday morning to discuss a book that the group voted on. Graduate students facilitate their discussion.
“I think we all love coming here because we all suffered or survived a stroke or
brain injury, and you're talking to people that can understand what you’re going through,” Anita said.
Aphasia is a disorder that affects the way a person communicates and may manifest itself in the way that a person speaks, writes or reads. The book club allows patients to improve on their comprehension and reading while engaging in conversations.
The participants are assigned two chapters a week and a chapter guide to help them in case the reading becomes overwhelming.
Anita and Austin prefer to read silently when they’re home. Austin said he doesn’t like to read aloud, because it makes him feel like he has dyslexia, “because I'll be reading and maybe I'll stop and think, ‘Wait a minute, that didn't sound right,’ and I go back and I read again and I realize I've misread one or two words. So that happens a lot.”
Dominic is hoping he will one day be able to read a full book without the help of the chapter summaries after suffering two strokes last year; he suffered his first eight years ago.
Rebecca Scanlon and Cathryn Traphagen, the facilitators for this past semester, measure success by simply hearing their participants hold conversations.
“We kind of try to let them really facilitate the conversation first, and then we'll go off of what they say so they really feel like they're a meaningful part of the group by starting their own discussions or helping each other instead of us just being on top of them the whole time,” Scanlon said.
This goal is being met as the facilitators look on as Anita explains a quote that Dominic didn’t understand. Or when the three participants have a casual conversation about not enjoying swimming before discussing the final chapters of “Just Mercy.”
Traphagen would like people to know that, despite needing extra assistance to get through a book, aphasics still have formidable mental abilities.
“I think one thing that people might assume is that their intellect is not the same, but that's not correct,” she said. “They are intelligent, extremely intelligent individuals. The only problem is that they're unable to communicate the way they used to communicate. So that is something that I feel like people need to understand, and aphasia awareness is really important.”
Being together for the last six years and working through the same disorder also allows the clients to foster relationships outside the club.
“We go to Holsten’s for lunch,” Dominic said. “And we have fun, even though I don't know what the heck they're talking about. My brain goes happy. So that's what a stroke is.”