In 1983, Howard Blatt was a middle-aged married father working as an electrical engineer at MIT when he collapsed in his kitchen. He'd had a stroke.
That health catastrophe left him with a paralyzed arm and leg, as well as almost total loss of speech. He was diagnosed with aphasia, a brain disorder that can occur after strokes and head injuries, and robs people of their ability to communicate.
Here's how Blatt, who died May 7 at his home near Boston at age 88, described his post-stroke condition: "No talking — zip. Speech — zip. One incident. Changed life."
Although he used adaptive devices to overcome some of his physical disabilities, he never fully recovered. And he discovered, to his dismay, that support networks for people with aphasia were a rarity in the early 1980s.
So, with his wife and a small group of other people, Blatt helped create an organization that may be his most important legacy: the Aphasia Community Group, now one of the country's oldest and largest continuously operating support groups for people with aphasia and their families.
Many of its members say the group — founded in 1990 at Spaulding Rehabilitation Hospital in Boston and now based at Boston University — rescued them from isolation.
It offers an expansive array of services and activities — including concerts, book groups, potluck meals, health information, and technology tips for managing disabilities — as well as companionship for people whose speech was stolen by strokes and other brain injuries.
"You think, oh my God, I am alone," said Mary Borelli, 61, a former elementary school principal in Massachusetts who was unable to speak after having a stroke at age 47. When she first attended the Aphasia Community Group, "I was like, here are people that understand what I'm going through, and they know how I'm feeling," she recalled, "and it was a beautiful thing."
At the group's meetings, noted Borelli, who speaks haltingly after years of rehabilitative therapy, "Everybody says, 'Take your time. Take as long as it takes to tell your story,' and then we all clap for each other. It's so good."
Aphasia does not affect intellect, so some aphasia sufferers liken it to living in a prison within their own brain; their minds work, yet they are unable to express themselves or understand spoken or written language. The condition can prevent them from speaking, reading, writing or comprehending, sometimes a combination of those, sometimes all of them. According to the American Stroke Association, at least 2 million people in the U.S. have aphasia, commonly as a result of stroke.
"Aphasia is so isolating," said another Aphasia Community Group co-founder, Jerry Kaplan, a Boston University speech-language pathologist who has led the organization since its inception. "Newcomers invariably say to me at some point, 'I thought I was the only one.'"
Thousands of people have attended the group since it began more than three decades ago, and for many of them it "becomes a very important part of their lives," he added.
"It's a place that feels safe, feels comfortable," Kaplan said. "It's a place where they meet other people who are struggling with the same challenges."
After Blatt had his stroke at age 48, he and his wife, Judy, quickly recognized the need for a local support network. At the time, there wasn't even a national group; the National Aphasia Association was founded in 1987, several years after Blatt's aphasia diagnosis.
"There was nothing when Howie had the stroke," said Judy, who was then a 46-year-old elementary school teacher with two daughters in college. "Boy, we would have appreciated having something. I mean, we were so young."
The Aphasia Community Group — part of the Aphasia Resource Center at Boston University's Sargent College of Health & Rehabilitation Sciences — draws people of all ages. Its members live mainly in New England, but during the coronavirus pandemic its meetings shifted to Zoom, allowing people around the country to dial in and join.
Many of its attendees considered Blatt an inspirational figure, thanks to his eclectic range of post-stroke accomplishments. Known widely as Howie, he was not able to return to his job as a computer hardware designer at MIT's Lincoln Laboratories after his stroke, but he worked methodically to regain as much function as possible.
He progressed from a wheelchair to a metal brace to a plastic leg support. He did extensive physical, occupational and speech therapy. He re-earned his driver's license, then drove cross-country by himself multiple times, documenting his trips with copious photographs. He dabbled in sculpting and designed additions to his house.
"He built a table, he built closets, he built cabinets," Judy Blatt, now 87, recalled. "He figured out how he could do it with one hand."
He studied grammar to try to improve his speech, treating English as a foreign language to be re-learned. He also created a newsletter called The Aphasia Advocate.
Throughout his rehab, Blatt documented his work in binders, assigning grades to himself. Immediately after his stroke, he gave himself flunking scores in all categories. Eventually, his grades improved, and he even earned an occasional A.
Over the decades, he was a faithful member of the Aphasia Community Group, as was Judy, his wife of 64 years.
When Borelli, the former school principal, began attending its meetings and met Blatt, she thought: "I want to be like Howie," she recalled.
"I think Howie was the example of what you could do with all the loss he had," said Judy Blatt. "He was sort of a model."
Other group members, she added, "could look at Howie and see what you could actually do, because he had done it."
The Aphasia Community Group, which will celebrate its 35th anniversary next year, is one of Blatt's most enduring achievements, and "for folks that have stayed with it for many years, it became a family," Kaplan said.
"This was a tenacious man who was really given a tough break in midlife, with young children, at the top of his game in his profession, and his communication gifts were largely wiped out," Kaplan said of Blatt. "But he did not give in to this for 40-plus years. And not only did he survive; he thrived."
Copyright 2024 NPR
