Learning to Pray When Words Fail

....Disorders like aphasia pose a challenge for adherents of speech-based faiths.

Julie Shulman decided to study linguistics because she wanted to help people with speaking disorders. She never imagined how personal this mission would become. After graduating from Israel’s Bar-Ilan University in 2000, the Maine native headed to Massachusetts for a master’s degree and job in speech therapy. Her husband, Ayal Shulman, worked as a business-development manager for an Israeli startup in Brookline. They returned to Israel in 2009—with promising careers and three young children.

Two weeks after their return, Mr. Shulman, then 37, suffered a massive brain hemorrhage. Despite the initially grim prognosis, his cognitive function is intact. But his speech is limited to sentences of three or four words, and his reading and writing abilities are limited.

Along with Mr. Shulman, at least two million people in the U.S. live with aphasia, according to the National Aphasia Association. Some 180,000 acquire the disorder every year. The condition, which produces a disconnect between what the brain wants to convey and what is actually expressed, often strikes survivors of strokes or head trauma without affecting their intelligence. The incidence is growing because medical advancements enable people with such maladies to survive at higher rates. Yet cures for the ensuing handicaps remain elusive.

Ms. Shulman —an Orthodox Jew deeply immersed in her faith—wanted to enhance her husband’s practice of Judaism. Today she helps reintegrate others suffering from aphasia into communal religious participation. As she agitates for public educational and inclusion efforts of the sort that better-known disorders receive, she has come to view the religious community as a natural ally.

“People don’t understand how the loss of speech is so debilitating, not only for your family life and your friendships, but also in the way that you practice religion,” Ms. Shulman, 40, told me. “It’s very frustrating for those who have practiced Judaism—or any religion for that matter—for most of their adult lives in a certain way, and now this ability has been taken from them.”

That fuels a sense of urgency for support on a grand scale, added Ms. Shulman. Even dedicated friends don’t grasp the complex layers of daily challenges that aphasia poses. Many families feel abandoned as their networks dwindle and they must adapt to this new normal.

After scouring sacred texts regarding speech impairment, Ms. Shulman began meeting with rabbis in Israel and the U.S. to educate a broad swath of communities about aphasia and to suggest strategies for supporting speech-impaired worshipers. Aiming to lower hurdles around synagogue rituals, for instance, she discussed with them the use of verbal and visual cues to help those with articulation difficulties fulfill the honor of being called to the Torah for a blessing.

Last summer Ms. Shulman organized a month-long Jewish learning program in Ra’anana, Israel, for people with aphasia and their families. It was formulated to address their language-processing challenges while recognizing their thirst for knowledge at a high intellectual level. The rabbis giving the classes on the weekly Torah portions spoke slowly and in short sentences, and paused more frequently, so words and concepts could be better absorbed. Ms. Shulman hopes this pilot with 15 participants will gain traction elsewhere around the world. She hopes to continue guiding scholars with appropriate lecture techniques.

Her work toward spiritual integration of people with aphasia applies to adherents of other speech-based faiths too. She hopes to collaborate with Christian and Islamic religious leaders to spur aphasia awareness in their own communities. She’s connected with a former pastor in New York whose wife has the disorder and is enthusiastic about enlisting clergy as change agents.

“The underlying principle of our practices, and involvement in our religion, is the use of speech,” she said. “Whatever blessing we choose, we express it verbally. By helping someone with aphasia partake in their religious practice, it gives them a sense of self-worth and empowerment.” She would know.

Mr. Shulman, now 45, works classifying diamonds for Leo Schachter & Co. in Ramat Gan, Israel. His faith unshaken, he walks to synagogue each morning with an electronic leg brace, puts on tefillin with his one functional arm, and mouths the prayers as best he can. I asked him about the significance of his religious participation since developing aphasia. “So important, community,” Mr. Shulman responded. “Friends, so important.”

Ms. Schuss is a writer in Boston.

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