{"id":206965,"date":"2022-04-25T11:17:06","date_gmt":"2022-04-25T15:17:06","guid":{"rendered":"http:\/\/www.montclair.edu\/communication-sciences-and-disorders\/?p=206965"},"modified":"2022-04-25T11:17:06","modified_gmt":"2022-04-25T15:17:06","slug":"montclair-hosts-aphasia-book-club","status":"publish","type":"post","link":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/2022\/04\/25\/montclair-hosts-aphasia-book-club\/","title":{"rendered":"Montclair Hosts Aphasia Book Club"},"content":{"rendered":"

Editor’s Note: Pseudonyms are being used in this article to protect book club participants’ privacy.<\/em><\/p>\n

Dave loves books. He spent 30 years as a high-level executive editor at a preeminent New York publishing house but aphasia, resulting from the first of multiple strokes, brought his career \u2013 and his ability to read \u2013 to an abrupt end.<\/p>\n

\u201cSeven years ago was my first (stroke)…then a year ago, I had two and three,\u201d he says. With hard work and lots of therapy, Dave is reading again, albeit slowly. Once a week, he travels from his home in Little Falls to Montclair State University\u2019s Department of Communication Sciences and Disorders clinic in Bloomfield to participate in the Aphasia Book Club. As the name implies, the majority of those in the club have aphasia or, as member Amelia puts it, a \u201clanguage problem,\u201d that can be brought on by strokes, head injuries, brain tumors or infections.<\/p>\n

Today, the group, which also includes Kim, who had a stroke in 2013, is discussing its current book selection: The Beekeeper of Aleppo<\/em>, a novel by Christy Lefteri about a couple\u2019s journey to Britain to escape war in their native Syria.<\/p>\n

Dave, the editor whose job was to edit and greenlight books for publishing, struggles. Words such as \u201cchapter\u201d or \u201cbook\u201d and his book club friends\u2019 names sometimes elude him but he actively participates. Instead, he points to his book, pages and people.<\/p>\n

\u201cDo\u2026women\u2026who\u2026are\u2026Muslim\u2026wear…high-jabs (hijabs),\u201d he asks haltingly about the book\u2019s protagonist. \u201cTheir\u2026whole\u2026life? So\u2026does\u2026Afra\u2026wear\u2026a\u2026high-jab?\u201d<\/p>\n

\"a
Dave, a former publishing executive, has aphasia after suffering multiple strokes. He is reading once again, albeit slowly.<\/figcaption><\/figure>\n

Dave\u2019s sometimes-faltering speech and simple sentence structure represent huge milestones in his speech-language recovery. As the book club meeting progresses, so, too, does his communication. \u201cIt\u2019s just like Bruce Willis,\u201d he says at one point.<\/p>\n

He and other book club members speculate as to what may have caused the actor\u2019s aphasia. Like most people outside Willis\u2019 circle, they don\u2019t know what led to the action-movie star\u2019s aphasia and resulting retirement, however, they are intimately familiar with the speech-language disorder.<\/p>\n

Most book club members are also clients of the Center, receiving individual or group therapy from Montclair speech language pathology students, who are supervised by licensed speech language pathology therapists.<\/p>\n

\u201cI couldn\u2019t speak,\u201d says Amelia, a former geography teacher who had a stroke in 2010. Rather than attempt to call the Montclair facility, she found it easier to drive herself from her home in Lyndhurst to the clinic, where \u201cthey took me right in.\u201d<\/p>\n

After years of treatment and working with speech language pathologists, Dave, Kim and Amelia have regained their voices \u2013 and their affinity for reading.<\/p>\n

\u201cReading for these particular clients is a skill that they loved and have lost or they struggle with,\u201d explains Montclair\u2019s Clinical Supervisor Diane Polledri. The book club \u201cwas specifically designed to provide an opportunity for clients who wanted to read but because of a brain injury were unable to do so or had difficulty reading again. It truly is a means of providing that outlet, improving quality of life, and providing an opportunity to engage in communication at a conversational level about topics of interest.\u201d<\/p>\n

Montclair\u2019s book club is modeled after the Aphasia Center of California\u2019s Book Connection™ Aphasia Book Club, which was started in 1999 after learning from clients that \u201ctheir inability to ‘read a good book’ is one of the greatest losses following their brain injury or stroke.\u201d Research has shown that book clubs can provide a support system that counters decreased socialization and reading ability that is common with aphasia.<\/p>\n

Aphasia and the Bruce Willis announcement<\/h2>\n

Although more than 2 million people in the U.S. are affected by aphasia \u2013 more than muscular dystrophy or multiple sclerosis, according to the Aphasia Center of California \u2013 few people were aware of it until recent news that Bruce Willis (who studied drama at Montclair and received an honorary Doctor of Letters in 1996) is \u201cstepping away\u201d from acting. The Center describes aphasia as a medical term which refers to the \u201closs or reduction of language \u2013 speaking, understanding, reading, and\/or writing \u2013 following brain damage, typically as a result of a stroke.\u201d<\/p>\n

Willis\u2019 revelation thrust aphasia into the spotlight, which another high-profile individual with the disorder says, \u201cWe don\u2019t talk enough about.\u201d<\/p>\n

\u201cBut we should,\u201d former congresswoman Gabrielle \u201cGabby\u201d Giffords recently wrote in an op-ed in The Washington Post<\/em> titled \u201cAphasia makes it hard for me to speak. But I have not lost my voice.\u201d<\/p>\n

Giffords, who survived a 2011 assassination attempt that left her with a shattered skull and other injuries, writes: \u201cPeople who communicate differently don\u2019t want to be made to feel like burdens or outcasts. We\u2019re seeking \u2013 and we deserve \u2013 the same level of human connection as everyone else.\u201d<\/p>\n

\"Kim
Kim discusses The Beekeeper of Aleppo<\/em> with Amelia; the two women have been members of the Aphasia Book Club since 2017.<\/figcaption><\/figure>\n

Aphasia Book Club, emphasis on \u201cclub\u201d<\/h2>\n

Amelia and Kim have participated in the book club since its inception in 2017, while Dave, who has been attending for several years, is a newer member. They are a tight-knit group of once voracious readers who meet on Tuesday mornings for book club discussions and socializing.<\/p>\n

Members choose the book they want to read from a list of five titles from various genres, including nonfiction, fiction, mystery, and a biography or memoir, provided to them by Polledri.<\/p>\n

\u201cThere have been some very good books\u2026some terrible books,\u201d says Kim, prompting laughs. \u201cIt was more the company of the people that made me feel comfortable among them.\u201d<\/p>\n

\"photo
The Aphasia Book Club\u2019s current read.<\/figcaption><\/figure>\n

The book has provided some heavy reading for the group, which has drawn comparisons between the Syrian war in Lefteri\u2019s book to the current war and atrocities in Ukraine. Amelia suggests the group may want to \u201cread a comedy\u201d as their next book selection.<\/p>\n

Montclair speech language pathology graduate students Lauren McArthur and Jessica Russo, both 23 and graduating in May, supervise the book club meetings. The students assign the reading, usually one or two chapters per week, depending on length. They try to avoid assigning more than 50 pages at a time because members read at varying levels. The goal is to finish reading a book within an 11-week session; book club meetings run concurrently with the University\u2019s semesters.<\/p>\n

To encourage discussion among members, who can also participate virtually, the students write a quote or phrase on the whiteboard. By facilitating discussion, McArthur and Russo \u201care really targeting the ability for these clients to communicate at a very high level of communication,\u201d Polledri says.<\/p>\n

\"Laura
Lauren McArthur, a graduate student in speech language pathology, uses visual aids with Dave.<\/figcaption><\/figure>\n

For those like Dave who require more visual aids, they also provide maps, and they compile a chapter summary, which is distributed prior to and at the meeting. The latter because \u201cclients will complain about forgetting what they read,\u201d Polledri explains. \u201cThis allows them to have the summary to refer to and have discussions.\u201d<\/p>\n

Says McArthur: \u201cFor the book club, the emphasis is really on the social aspect. It’s really allowing them the safe space to engage with their friends, read the book, and just provide them the support to do that. It\u2019s an incredibly important aspect because it has to do with their quality of life.\u201d<\/p>\n

The sessions are not \u201csuper regimented,\u201d she says. \u201cWe veer off a lot, especially for current events that may be relevant to the book. We have been talking about Ukraine a ton because of its parallels to the book.\u201d<\/p>\n

Typically, speech language pathology students get clinical hours for the book club assignment but McArthur and Russo are volunteers because they have already completed their three semesters of clinical hours, says Speech Language Pathology Clinic Director Katherine Papas. They volunteered because they wanted experience working with groups and adults.<\/p>\n

\u201cOne of our close friends also facilitated this book club last semester, and she told me about how great it was, so I jumped at the opportunity,\u201d says Russo, adding that she emailed Papas and practically begged to lead the book club.<\/p>\n

McArthur says once she\u2019s licensed as a speech therapist, she wants to work with adults. \u201cI\u2019d love to work in a hospital or rehab.\u201d<\/p>\n

\"Jessica
Jessica Russo, a speech language pathology graduate student, who volunteered to lead the Aphasia Book Club, says she will be sad to leave it.<\/figcaption><\/figure>\n

Working with book club members, say McArthur and Russo, has helped them get through the sometimes-stressful days of graduate school. In addition to feeling productive, Russo says, she enjoys the \u201centertaining conversations.\u201d<\/p>\n

\u201cI’m going to be very sad to leave this book club,\u201d she says. \u201cLeaving is going to be one of the hardest things because I look forward to it. This is a really great experience, and I’m glad I was able to be a part of it.\u201d<\/p>\n

During the meetings, the students strive to \u201ccapitalize on\u201d book club members\u2019 strengths, Russo says. \u201cYou can see the dynamic, especially among these three; they are very supportive of each other. When one of them will put themselves down, the others are there to help lift the other back up. There are really great and strong friendships that have come from this book club. They really all do support each other, which is such an important aspect of social communication.\u201d<\/p>\n

Finding language, laughter and love<\/h2>\n

While communication is a primary focus at the clinic, the speech language pathology team is also focused on quality-of-life issues, Polledri says.<\/p>\n

The book club \u201cgives our clients an opportunity to engage in an activity that has been lost to them with people that understand their struggles and that have the same type of struggles,\u201d she says. \u201cIt is truly magical to see them support each other.\u201d<\/p>\n

Additionally, \u201cthat support gives them back their sense of being able to help others, which is lost when you’ve had a brain injury,\u201d Polledri says. \u201cYou become the person that’s helped, as opposed to someone who is helping others, and our adult aphasia groups \u2013 and the book club \u2013 enable them to help each other, so, it’s very special.\u201d<\/p>\n

\"photo
Amelia, who had a stroke in 2010, has been attending the Aphasia Book Club since its inception in 2017. She says it took her six months to read her first book.<\/figcaption><\/figure>\n

Support and encouragement were on full display during the book club session.<\/p>\n

\u201cMy brain doesn\u2019t work anymore,\u201d Dave says at one point.<\/p>\n

\u201cYour brain works,\u201d Amelia tells him. \u201cYou had a stroke.\u201d<\/p>\n

\u201cA stroke. Yeah\u2026I have to get better,\u201d he replies.<\/p>\n

\u201cDave, I think you\u2019re doing a great job,\u201d Amelia reassures him. \u201cI really think you\u2019re doing a great job.\u201d<\/p>\n

\u201cI agree,\u201d McArthur adds. \u201cYou\u2019re doing great. Look how far you\u2019ve come.\u201d<\/p>\n

\"Amelia
Amelia, who has been a member of the Aphasia Book Club since it started in 2017, assists Dave by showing him a map on her phone.<\/figcaption><\/figure>\n

Dave explains to a visitor: \u201cI had a stroke. Seven years ago\u2026I couldn\u2019t talk\u2026They [speech language therapists and students] helped me\u2026I couldn\u2019t say anything.\u201d<\/p>\n

Despite repeated mentions of his stroke and talk of how he misses publishing \u2013 or \u201cwhat I used to be,\u201d as he sometimes put it \u2013 it\u2019s also clear that Dave relishes being the class clown.<\/p>\n

At one point, he talks about how strokes affect people differently. \u201cWhatever you have is a stroke. That’s why we have people like Diane. She helps us a lot. I don\u2019t really know\u2026but I\u2019m supposed to say that,\u201d he says, prompting laughter from the group.<\/p>\n

That assistance, as well as the encouragement and friendships, are what keep the members coming back.<\/p>\n

\"a
Kim, who had a stroke in 2013, says she can read but has a hard time articulating what she\u2019s read.<\/figcaption><\/figure>\n

\u201cWe\u2019ve been together a long time,\u201d says Kim, who lives in Glen Ridge and has apraxia, which makes speaking difficult because of a disconnect between the brain and body movements, such as lips, tongue, jaw and limbs. \u201cI was comforted by people with similar disorders. I felt comfortable among them. This was very important.\u201d<\/p>\n

Dave sums it up this way: \u201cI come there to be happy\u2026\u201d Then teasing Amelia and Kim, he adds, \u201cAnd I’m not sure I like these two guys.\u201d<\/p>\n

The group erupts in laughter yet again. He laughs, adding: \u201cNo, I really have\u2026become friends\u2026with lots of names. It’s just great. I love what I have. I love them everywhere.\u201d<\/p>\n

Amelia adds, \u201cI feel if I could get an inch better, that\u2019s why I come here all the time. Kim said it all. It\u2019s the comfort that we get because we\u2019re not\u2026We can speak but, you know, it\u2019s hard sometimes\u2026We can make mistakes, and we could say things wrong, and we all know that. We all know that.\u201d<\/p>\n

Dave chimes in: \u201cThey taught me\u2026how to read\u2026just like I was a kid once again.\u201d<\/p>\n

Pointing to Amelia, he says, \u201cShe helped me\u2026I wasn\u2019t good at what I used to do. They told me how. They told me how. She told me how.\u201d<\/p>\n

Amelia replies: \u201cOh, I could cry now. Come on, Dave, oh my goodness!\u201d<\/p>\n

Story by Staff Writer Sylvia A. Martinez<\/a>. Photos by University Photographer Mike Peters<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

Editor’s Note: Pseudonyms are being used in this article to protect book club participants’ privacy. Dave loves books. He spent 30 years as a high-level executive editor at a preeminent New York publishing house but aphasia, resulting from the first of multiple strokes, brought his career \u2013 and his ability to read \u2013 to an […]<\/p>\n","protected":false},"author":273,"featured_media":206966,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[4],"tags":[],"class_list":["post-206965","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-171_communication-sciences-disorders"],"_links":{"self":[{"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/posts\/206965","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/users\/273"}],"replies":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/comments?post=206965"}],"version-history":[{"count":2,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/posts\/206965\/revisions"}],"predecessor-version":[{"id":206976,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/posts\/206965\/revisions\/206976"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/media\/206966"}],"wp:attachment":[{"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/media?parent=206965"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/categories?post=206965"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.montclair.edu\/communication-sciences-and-disorders\/wp-json\/wp\/v2\/tags?post=206965"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}