HOW WE GIVE NOW

In Brooklyn, stroke patients learn to speak again–in two languages

Obsession
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Obsession
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Aphasia patients, often elderly and carrying the burdens of life, have seen their lives changed dramatically–in many ways, for the worse. So how did one rehabilitation group, deep in Brooklyn, become the happiest place in New York City?

Across the street from Café Euphoria and just a short walk from the Kings Highway subway stop in Brooklyn, Sveta, a fifty-something, blond, blue-eyed woman, shuffles with a cane into a bright fourth-floor classroom, trailed by her home attendant. After Sveta, short for Svetlana, sits in a metal chair with an attached arm desk, joining a group of three men and one other woman, Izya, a white-haired former school bus driver, scoots his chair closer to hers and slides his arm around her shoulder. “Tell me,” he says flirtatiously. “Do you feel better when I sit next to you?” Sveta grins, and everyone else erupts in laughter.

The connective tissue of this group—a weekly rehabilitation group for Russian-speaking aphasia patients, which is held at Touro College—is humor. Everyone has it in spades, especially Izya, who, in addition to surviving stroke has also survived lung cancer. He has the kindest eyes; they move slowly, intentionally, concern belying his jovial appearance.

 But that had been grief—this was joy. Yet that grief and this joy were alike outside all the ordinary conditions of life; they were loopholes, as it were, in that ordinary life through which there came glimpses of something sublime. –Tolstoy Seconds before Sveta’s arrival, Izya and two other senior citizen-aged men, their seats arranged in a horseshoe, had been singing an old Russian folk song, while Natasha, the other woman in the group, smiled in bemusement. In Russian, Naum, a former engineer who spoke nine languages pre-stroke, had pointed one finger skyward and said, “Is Turkish song!”—a joke meant to convey that if anyone’s ears hurt, don’t blame their subpar vocals; blame it on the Turks, blame it all on the Turks.

To the people in this room—all of whom have had strokes—speech doesn’t come easily. The form aphasia takes depends, in part, on which areas of the brain have been affected by stroke or other neurological conditions, such as a tumor or traumatic brain injury. The patients here—with the exception of Naum, who has mixed aphasia, a combination of Wernicke’s and Broca’s—have good auditory comprehension. Their main struggles are finding words, formulating sentences and having the courage to say them.

The group’s facilitator, Dr. Isabella Reichel, an associate professor in speech pathology at Touro’s Graduate Program in Speech-Language Pathology, is committed to maintaining an upbeat atmosphere. She explains, “The left frontal lobe produces dopamine when people are happy; then they process information better, including language.”

Within the group, Reichel aims to discuss topics that are personally meaningful to the members. For example, Naum was quiet until Reichel asked him about his mother. Now, he is endlessly chatty—and grateful: When he sees me taking notes, he points at Reichel. “This for you!” As easily as she had just explained to his home attendant that wearing a cap is an expression of his religious observance, she turns to me and says, “He wants me to tell you how much I have helped him.” With a laugh, she adds, “It’s my job, to understand them.”

On the American Stroke Association’s website, the experience of aphasia is likened to finding oneself in a foreign country and not understanding the language: “You might even have an elemental knowledge of that language, allowing you to recognize words here and there, but you would not have command of the language and couldn’t follow most conversation.”

For the members of the Touro group, the isolation is doubled; not only is their disorder like waking up in a foreign country; they actually are in a foreign country. And not only is isolation from one’s native culture an impediment to recovery, but rehabilitation is further complicated when the patient can’t use his native language. Yet in the United States, only six percent of speech pathologists are bilingual. Many families end up having to hire private practitioners, which can cost anywhere from $100-$150 per hour.

The only Russian-speaking aphasia group in North America, Reichel’s group is currently also the only bilingual aphasia group in New York, after a Bronx-based Spanish-language one closed last year. And it’s free. While support groups are often characterized by camaraderie, the bonds here are extra tight; for that, Ina, whose husband Sasha has been attending for five years, credits the dual links of this group—culture and language. “They don’t feel shy. They understand what is going on with all of them,” she says. Of Reichel, Ina adds, “She does this from her whole deep heart. ”

Throughout the years, Reichel, who hails from Kharkov, the second largest city in the Ukraine, had been receiving calls from local Russians, wanting to know if she could help their loved ones. But Reichel, whose specialty is a fluency disorder called cluttering, hadn’t been able to find institutional support. In late 2008, she began teaching at Touro, where she raised the possibility of hosting a group there. After the administration at Touro replied enthusiastically, Reichel bundled herself up on a memorably cold day in February 2009, walking up and down Kings Highway, visiting doctor’s offices and handing out pamphlets for the soon-to-be launched group. Patient by patient, they came.

In Cluttering: Current Views on Its Nature, Diagnosis and Treatment, a textbook Reichel co-authored with Dr. Yvonne van Zaalen, Reichel included an excerpt in the appendix from David Miller’s The Secret of Happiness, published in 1937: “A noble character acquires happiness through the opportunity of making someone else happy. It is only that kind of kindness that will lead to happiness.”

“I wanted something special to include, something that really resonated with my philosophy,” she says.

 I remember my first laugh: Izya, who lives in Coney Island, said of the storm, “It was a tragedy. All the liquor stores were closed. When Reichel told me that, I’d been visiting her group on and off for two and a half years. (I first attended just after Superstorm Sandy, when Touro contracted me to write a story about Reichel; I remember my first laugh: Izya, who lives in Coney Island, said of the storm, “It was a tragedy. All the liquor stores were closed.”) By the time Reichel shared the Miller excerpt with me, I’d come to realize that the members’ eagerness to make each other laugh is a form of the kindness that Miller writes about and Reichel subscribes to. At her home, her walls are lined with tomes about neurobiology, psychology, and, her passion, emotional intelligence, which includes the ability to lift others’ spirits.

More recently, while talking about Miller’s book, Reichel explains how she chose the responsibility of the group, which includes supervision of two graduate students each semester. (Seeing clients and supervising students is not a requirement of her position.) Rather than viewing it as a volunteer position, when pressed, she calls it “a labor of love.”

“It’s just another part of my life,” she explains. “I have this opportunity to run it, so I do.”

It’s easy to understand why. She expresses nothing but positive feelings about her experiences with the aphasia group: “We laugh more here than at home. Every time, our stomachs hurt from laughing so hard.”

The fun-filled atmosphere Reichel describes does lead to clinical results. For example, when Ina first brought Sasha, a hulking former limo driver, to Reichel’s group, he wasn’t speaking. For two years, he’d had excellent care at area hospitals, but little success with words. Following his stroke, his mood had become uncharacteristically erratic. Reichel said, “He will talk,” but Ina doubted that. She thought, At the very least, he will be busy.

After a few months, he uttered his first words to Ina: “Love you.”

When I start asking Reichel questions about Miller and happiness, she allows me sit at her computer and read the entire excerpt. This jumps out:

An act of kindness has a marvelous effect. It transforms the donor to the recipient. In consequence, it is not an expenditure, but it is an investment with an immediate return of high yield.

That’s why this group is so appealing: it’s blessedly unclear, at any given moment, who is giving to whom.

My paternal grandmother had a stroke and then subsequent episodes, starting when I was six years old; until she died six years later, I visited her at the nursing home every week with my father. Once, at the end of a visit, she grabbed my hand, squeezed as hard as she used to hug, and said, “Stay?”

Every time we said goodbye, I felt helpless.

The night before her funeral, as our large, extended family filled the first floor of the funeral parlor, I drank in the scene. Everywhere I turned, I saw happiness. The stories became more bawdy, the laughter louder and louder still. There was reminiscing, joke-telling, story-telling, knee-slapping. I remember my cousins, my aunts, my uncles, all of us, partying. This wasn’t a light happiness, I understood, even then. By having spent the six years of her decline in grief—something I had no words for at that age—we were now swimming in joy. It was painful, colored by melancholy, but joy nonetheless.

At the aphasia group, the members’ exuberance is similarly palpable, mesmerizing even. They embody these words by Khalil Gibran: “Your joy is your sorrow unmasked.”

 “Daddy, I can’t walk.” His father said, “If you don’t walk, they will shoot you.” A year and a half ago, during one of my visits, Naum brought in a book with old pictures of Western Ukraine. The pictures prompted Izya, who is also from that region, to start telling stories from his childhood. During the Holocaust, Izya and his family were forced out of their home at gunpoint by the Romanian police. As they walked with other Jews to a ghetto approximately 400 miles away, Izya, who was just nine years old at the time, said, “Daddy, I can’t walk.” His father said, “If you don’t walk, they will shoot you.”

The “death walk” took forty-five days. Food remained scarce. At one point, Izya found two pieces of coal, created a fire, and fried potato rinds on a piece of wire. (As he spoke, Reichel wiped tears from her eyes, while Naum chimed in in the background, “Po-ta-to.”) Four years later, finally liberated by the Russians, Izya went home with his mother, his lone remaining family member.

Reichel explained, “That’s why he’s so empathetic. He has been through so much. His language is better, but he just comes to cheer everyone up.”

He is good at it, too. He often tries coaxing Sveta into speaking, blurting things like, “We look alike!” and “I love you!”

Maybe the reason the aphasia patients exude such an appealing warmth, is that here, binaries we accept as “either/or”—giving and receiving, grief and joy—feel interchangeable. The deeper we grieve, the greater our capacity for pure elation. What we give, as Isabella, Izya, and the rest of the group demonstrate, we receive ten-fold.

Reichel has a lot to say about the feedback loop of joy in the group, particularly about the members’ resilience and their willingness to laugh. She says, “The light in their eyes—it is incredible. You can never imagine what pain they went through.”

The laughter in the corner, sun-filled classroom just a handful of blocks from the Kings Highway Q line subway stop is not the laughter you would hear on a Bacchanalian spring break, or some free-and-breezy summer barbeque. Tinged with an intense awareness of mortality, it’s better, actually.

Suzanne Guillette is the author of Much to Your Chagrin: A Memoir of Embarrassment. We welcome your comments at ideas@qz.com.

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