Aphasia can be devastating emotionally and socially as well as mentally. People with aphasia usually know the core of our intelligence is still intact. We are aware that our problem has to do with understanding once-familiar phrases, and getting the words out in order to communicate. What makes it even harder is when we’re treated as if we have the intellect of a preschooler. Aphasia or not, we’re still intelligent adults with a full array of life experiences. That’s why aphasia book clubs are so effective. They’re the ideal setting to build confidence among peers as you rebuild your communication and language skills. Being in the company of like-minded people who share the same experience is an incredible way to support each other’s progress.
If you need to improve your reading, comprehension and speaking due to aphasia, reading a book out loud will be a vital therapy technique. It’s even better if you seek out an aphasia book club. Here are five ways to make the best of them so you’re benefiting the most:
1. Resolve to Participate: No matter how discouraging aphasia can be, an aphasia book club is a safe and supportive environment. But you can’t make progress if you don’t participate. Commit to be a part of it. Practice summarizing, paraphrasing, and reading out loud to the group as well as to yourself. Everyone there is in the same shoes. The more involved you all are in your own and each others’ progress, the more confidence you’ll all develop. When I started joining in discussions and actively participating, that’s when I began to really improve.
2. Work as Hard as Possible: Challenge yourself to work at the book you’re reading, even if it’s just in small passages. The process of reading and understanding a book, trying to summarize the chapters, and talking about it it out loud was crucial for me. At first I didn’t comprehend what I was reading, and would have to reread portions a few times to actually understand them. But I kept at it, stayed current with the group, studied some vocabulary terms, learned new ways to answer open questions, and soon saw myself making real progress.
3. Join More Than One Club: I joined not one, but two aphasia book clubs, so I would have to read and discuss as much as possible. On Tuesdays, I went to the Rehabilitation Institute of Chicago (RIC) Aphasia Book Club, where we read A Reporter’s Life by Walter Cronkite. On Thursdays, I went to Northwestern University, where we read Water for Elephants, a historical novel by Sara Gruen. The more clubs you’re in, the more reading and reading out loud you will do, and the more you’ll get to be in a social, learning environment. That immersion helped me gain the self-confidence to pull myself up and over the hurdles faster.
4. Chart Your Progress: In Northwestern’s aphasia book club, where I was one of five stroke survivors in the group, I came to really enjoy Water for Elephants. We were required to read a specific number of pages each week and then review them as a group. The therapists would ask us to read a paragraph out loud. We stroke survivors sat on one side of a table, and three clinicians from Northwestern’s speech program sat on the other side with lists of questions. Eventually, I was able to ask turn the table, so to speak — and ask the clinicians at least two questions every week. That was a switch!
5. Stay With It: My goal was to be able to put what I had learned so far into cohesive, succinct, error-free sentences. So I arranged my weekly schedule around these groups. It was hard to get through four chapters a week, but I did it. I joined at the right time for me, but it was continuing over the long term that made the real difference. Over the next few years I joined other aphasia book clubs and even led one, getting better at listening and discussing as well as reading, comprehending, summarizing, and memorizing vocabulary terms. The books we read included 90 Minutes in Heaven, The Alchemist, In Cold Blood, The Memory Keeper’s Daughter, Left Neglected, The Harbinger, The Monk Who Sold His Ferrari, The Boy in the Suitcase, Kill Me If You Can, Taken, The Uninvited Guest, and my favorite so far, Gang Leader for a Day.
More people with aphasia are being encouraged to participate in activities such as book clubs, technology groups, and art clubs. The benefits go far beyond regaining communication and comprehension. These experiences help people with aphasia regain their confidence, social self-esteem and comfort around those who don’t have aphasia, and adjust to the life changes that stroke and aphasia bring.
They also give people with aphasia a means to actively challenge that sense of isolation and depression that aphasia can cause. Strength comes in numbers: when you find yourself in the company of people in the same boat, you’ll find that you all have a special determination and drive to learn. So don’t worry about the naysayers who claim an aphasia book club “didn’t work.” Stick with it. You’ll be glad you did.
**Originally published at Digital Health Buzz