In previous semesters, the College of Public Health’s book group for people with aphasia had chosen two lively novels to read: one about a widow who joins the CIA, and the other about a bookstore owner who receives a mysterious package. But this year’s choice, the nonfiction Identity Theft: Rediscovering Ourselves After Stroke, felt much more personal to group members. This summer, the group meeting to discuss it stirred up teary moments along with laughter, bonding, and mutual encouragement to face the challenges ahead rather than look back.
The book’s author, former Stanford University professor Debra Meyerson, like members of the group had suffered a stroke amid a successful career. She uneasily accepted a new reality of life with aphasia, a communication disorder that can impair a person’s ability to speak, read, write, and process incoming language. For people with aphasia, the intellect remains intact; vocabulary isn’t necessarily lost, but a pathway to access it is damaged. The impact is more than physical. It can cause isolation, depression, and a “painful longing for what once was,” Meyerson writes in the book, which her son helped her put on paper. “Eventually we all come to appreciate that many of the qualities we have defined ourselves by are now threatened by our loss of capabilities.”
Temple has long provided free speech clinics to adults and children through the College of Public Health’s Speech-Language-Hearing Center. These sessions provide personalized speech therapy to people from the local community and give CPH’s speech, language and hearing students experience working with clients in meaningful clinical settings. The Philadelphia Aphasia Community at Temple (PACT), led by associate professor Gayle DeDe, grew out of that program, supplementing clinical sessions with discussion groups centered around topics like art, music, spirituality, aphasia advocacy and books.
“The idea behind the groups is really conversational treatment,” said Francine Kohen, an instructor in the Communication Sciences and Disorders Department who runs the PACT book group sessions. “Most of these people have had individual speech therapy to work on the impairment. But when they're out in the real world with their families, their friends, spouses, coworkers, it's harder. This is an opportunity to generalize things that they've learned. The idea is to help them participate in conversations again.”
As any language learner knows, immersion in real-life discussions is different from working on exercises. The members of the book group, all women, sometimes need to employ strategies they have learned to access words and build sentences. They might deliberately speak one syllable at a time or recite a few letters before recalling a word. But the way they inspire one another to share ideas seems to tap into their language stores more organically.
The group also is a way for its members to keep books in their life. “There’s nothing worse for a person who reads who can't read,” said group member Denise Mendez, a PhD and former head of math curriculum for a public school district. “Because of the stroke, my comprehension is, you know, I mean I've got four college degrees. It's not like the intellect is jacked up. It's the...brain part of it.”
PACT had a separate event prior to the book group meeting, also via online video, celebrating June as Aphasia Awareness Month. Melissa from the book group, who at age 15 suffered a traumatic brain injury in a sledding accident, introduced guest speakers Meyerson, who joined remotely to help celebrate aphasia month with a short presentation and Q&A.
Meyerson read from her book. A high achiever, she had been accustomed to fixing any problem by working hard enough on it, but her stroke forced her to shift expectations and accept what her best efforts couldn’t fix.
“Three years after my stroke, my identity crisis began,” she read. “My stroke took so much from me, my independence and control, my career. But to me I was the same person, so I had to get my capabilities back. Three years I worked my ass off...and I still didn't regain all my capabilities. I couldn’t be a Stanford professor anymore. Losing tenure was a huge blow. Rebuilding my identity as a stroke survivor was the hardest part of my recovery.”
A few hours later, the book group convened via Zoom to discuss Chapter 11 of Meyerson’s book, titled “People Are Social Animals.” It explains the human need to be socially engaged. Meyerson describes having been reluctant to join a weekend getaway with longtime friends after her stroke, feeling she would be a burden.
College of Public Health speech, language, and hearing master’s students Kirite Arindell, Sabrina Popa and Gabrielle Giangrasso had prepared discussion topics to supplement a study guide created by Meyerson’s Stroke Onward organization. Some people in the book group also had used an audio version of the book as an aid. The students were volunteers, embracing the chance to augment their speech therapy training by interacting with the group in a less formal way.
Arindell started with a prompt: “Deborah was saying that many stroke survivors find it difficult to re-enter the social side of life. Maybe because of a physical limitation, a feeling of embarrassment, feeling like a bother to others, struggling with depression. Did any of these reasons apply to you?”
“She was talking about young stroke survivors, the isolation,” Melissa said. “And I was thinking, ‘Oh, my God. I remember that.’ After 15 years old, and then almost seven or eight years...just isolating...nothing at all. I learned to accept it, and having a life again, moving on.”
The women talked about moving past that “painful longing for what once was” that Meyerson’s book described.
“I'm not there yet,” said Cheryl Padgett, a career schoolteacher. “Two years ago. I would cry all the time. I'm not crying and all that. But I'm still like...when she said ‘the old Deb,’ I said ‘yes, sometimes I still think that I am the old Padgett. And sometimes I'm on the phone, and in person, and they still think I'm that person. But I know I’m not. I’m not there yet, guys, for real.”
Kohen took the opportunity to interject some advice from the book. “What I was gonna say,” she said, “is one of my favorite parts of this chapter is two words—she said she allows herself sometimes a five minute ‘pity party.’”
The women nodded and laughed a little at the idea.
“We've all been there, and it's day by day,” said Christine, a career engineer before her stroke. “You have your moments when you feel sad for yourself. But the next day, you pull yourself up.”
Christine told the others about her hesitance to reconnect with work acquaintances.
“They knew me as a leader, a boss lady, then my stroke happened, and I couldn't even put together a sentence,” she said. Finally she decided to attend a conference where she knew she’d run into old colleagues. She was hoping to get professional development credits to keep her engineering license active.
“I think that was a big turning point for me. Because I saw people who approached me and said, ‘I'm so glad to see you here,’ and they move on. I saw some pity in their eyes. So I entered social life with that conference, and I got my credits. But I decided this year, I'm not going to renew,” Christine said, and her voice started to crack. “I'm not going to be an engineer anymore. Because I can't. I can't do it. “
Then she pulled herself together quickly and laughed through tears. “But I’ve been doing a lot of other, better things.”
The meeting hour flew by quickly. “Every week we touch on emotionally heavy content, but I think just the intensity of that day made it more of an emotional experience,” student clinician Popa said afterward.
“You would think that these people have had opportunities before to talk about these things, but they really never have,” Kohen observed. “Sharing their stories is kind of new. I think that's part of the emotion that you're seeing.”
“I especially like to see how they support each other in those moments,” student clinician Giangrasso said. ”They all have such positive attitudes. And they do a great job of asking permission, like, ‘Can I share a similar story? Can I offer some comedic relief?’”