Book Chronicles Rutland Man's Revolutionary Impact On Traumatic Brain Injury Research
In the Rutland area, the name Lenny Burke is well known to many. But thanks to a new book by Yvonne Daley, called A Bend in the Road, Lenny Burke's remarkable story of overcoming a traumatic brain injury is being rediscovered by a whole new generation. And many are only just now realizing the tremendous impact Burke and his mother Emmie have had on T.B.I. treatment in Vermont and beyond.
This story begins in 1979 at Mount Saint Joseph Academy in Rutland. The high school gymnasium was packed for a varsity basketball game against Mount Anthony Union.
Lenny Burke was a 17-year-old senior and star forward who dreamed of playing college ball. He was a natural athlete and a gifted student. Middlebury and the University of Vermont had already accepted him for their pre-med programs the following year.
But everything changed that January day 36 years ago. Lenny was leaping toward the basket, trying to score, when a player from the other team rammed into his legs and undercut him. A photographer from the Rutland Herald captured that very instant in an eerie photo published the next day.
Lenny's mother Emmie Burke was in the stands and saw her son bounce off the backboard and crash head first to the floor. "He did try to stand up," she says. "I know in his mind, he was wanting to make that shot, because he knew he was fouled. But of course the subdural hematoma came so fast that he couldn't stand up."
There was an unnatural hush in the stands. "Everyone just sat there, stunned," says Emmie, "watching as Lenny was taken out to a waiting ambulance."
"I really did not know the seriousness of his injury," she admitted. "I had never heard of T.B.I.; it was called head injury at the time. I had never heard of it so I didn't know what to do or how to handle it and relied totally on the doctors who took care of him."
Local doctors did all they could, but weren't optimistic, and Lenny remained in a coma for 45 days. During that time, Emmie says she willed her son to breathe and read everything she could get her hands on that had to do with brain injuries.
I didn't know anything about traumatic brain injury except for one article I had read in 'Ladies' Home Journal.' - Emmie Burke, Lenny's mom
"I didn't find much of anything. The doctors were kind enough to let me go into the hospital library to take a look and I remember picking up a book called The Shattered Mind and it was written in lingo that I didn't understand. I was a mom, period," says Emmie. "And I didn't know anything about traumatic brain injury except for one article I had read in Ladies' Home Journal."
The article she'd read had described a new technique for head injury victims that called for lowering the person's body temperature and increasing their oxygen. Emmie mentioned it to the local neurologist who promised to look into it.
"And he went home and read about it and put Lenny on it," she says. "What it did was relieve some of the pressure in the brain and save some of the neurons that were very important."
It would be the first of many instances where Emmie took the lead in her son's recovery, said Rutland native Ron Savage. "Emmie is one of the most impressive people I've ever met in my life," said Savage. "Not only in terms of her resiliency in not letting go of things, but in searching things out. She was never afraid to try something."
Emmie is one of the most impressive people I've ever met in my life. Not only in terms of her resiliency in not letting go of things, but in searching things out. She was never afraid to try something. - Ron Savage
At the time that Lenny was injured, Savage was a special education teacher. "And when Lenny was injured," says Savage, "Everybody was just trying to figure out what are we going to do about it."
The community rallied, raising nearly $100,000, an unbelievable amount of money at the time. When Lenny finally awoke from his coma and began to speak, Savage said people were thrilled.
"We all thought that with that money we would send Lenny across the country to California, the only place at the time that worked with people with head injuries. And we all thought quite honestly, that if we sent him out there that he was going to come back all 'fixed,' if you will." But Savage admits, "That's not the way he came back."
When Lenny came back, Savage says he still had huge problems, yet there were few answers as to how to overcome them.
"And that's sort of the area that no one had investigated whatsoever," adds Savage. "We knew how to save lives, we did have a little bit of rehabilitation here and there, but no one was doing care afterwards, a year afterwards, two years afterwards ... what do you do 30 years afterwards?"
Emmie had gone to California with Lenny and had peppered the rehabilitation staff there with questions, and watched everything they did closely so she could care for her son when she brought him home. "The doctors set us up with a psychiatrist who said, 'You've done it once, you can do it again,'" says Emmie. "'Just be a mother; just take care of him with your instincts and do what you need to do.' That was really good advice and it wasn't daunting. I knew I could do that."
Emmie and her husband had three other younger children, and she says the entire family helped with Lenny's recovery.
But it was a long haul, filled with frustrating ups and downs. "Lenny had a long streak of inappropriate behavior," says Emmie. "That was the most difficult part. And we watched him all the time to see what is he saying now, and it became really stressful for all of us."
But Emmie was determined. She wanted Lenny to return to high school and have a life, so she called Ron Savage, who she knew taught special education.
Savage wanted to help, but admits he felt daunted by how much he didn't know about brain injuries. So he began reading. He says he was shocked by the lack of material. "It surprised me because we knew about this population from World War II," he says. "There were studies of thousands and thousands of men who came back with head trauma, and certainly from Vietnam." But Savage says no one was writing up what works. "What do you do? What's the evidence? Is this the best practice? What types of therapies are going to help this person improve their functioning?"
Savage's research took his career in a whole new direction, and today he's one of the nation's leading experts on traumatic brain injury. He heads a pediatric brain injury rehabilitation school in New York City, is the chair of the International Pediatric Brain Injury Society and a past chairman of the North American Brain Injury Society.
He says everything he's done in the field he can trace back to Lenny and the early work he and Emmie began in Rutland. "What happened with Emmie and I is we started getting calls from other families who said, ‘I also have a child with a brain injury,' or ‘I have a spouse who has a brain injury,' or 'There's a person across the street who has a brain injury.'" Savage says, "It was one call after another call after another call. And Emmie and I were literally sitting around talking and I just simply said to her, ‘You know, there needs to be an organization, there needs to be outreach, there's not just one Lenny Burke, there's a lot more.' Of course Emmy felt the same way and Emmie's thing is, 'Well, this needs to be formed.'"
With help from a small grant, they created a statewide organization called the Head Injury Stroke Independence Project, H.I.S. for short.
"Within no time whatsoever, here's Emmie and Lenny getting in the car and they're driving all over Vermont to meet with parents and people who have had brain injuries, and they're helping them," says Yvonne Daley. Daley's new book, The Bend in the Road, chronicles Lenny's journey. "And Emmie and Lenny are finding what resources are in people's neighborhoods and their schools and they're working with them to try and brainstorm ways to keep young people, for example, from living the rest of their lives in nursing homes."
Daley writes that in the first four years, the H.I.S. support group helped more than 500 families. "And this led to Emmie and Lenny, together, realizing was that most people needed to be in their own home, or in an apartment that they could manage, or if they couldn't, to live in a facility that was like a home. And that's how we got Lenny Burke's Farm," she says.
In 1987, Emmie bought an old farmhouse and barn in Wallingford. Daley writes that turning it into a residential treatment facility was a huge undertaking, but Emmie trusted her instincts and many in the Rutland community pitched in to help. Two months after they opened, Lenny Burke's Farm had its first client. That was 27 years ago.
"Today, Lenny Burke's farm has five, soon to be six facilities serving about 25 people in-house with full time residential treatment," says Kevin Burke. "And then we have about an equal number of folks who are in their own apartments with jobs throughout the community who we provide services for as well."
Kevin Burke is the long time co-director of Lenny Burke's Farm – and even more important, he adds, he's Lenny's brother.
Kevin says when his mom first came up with the idea of creating home-like settings for people with brain injuries, the idea was pretty unheard of. But he says now it's widely regarded as a highly successful, more cost-effective model of care.
I always say it's the most real place I've ever worked. It's home, it's therapeutic, and not just the clients, but the staff. It's like family. - Kathy Chandler, an employee at Lenny Burke's Farm for 15 years
Kathy Chandler has worked at Lenny Burke's Farm for 15 years. "I always say it's the most real place I've ever worked," she said. "It's home, it's therapeutic, and not just the clients, but the staff. It's like family."
Recently, at one of the group homes in Wallingford, staff members move a long table out of the kitchen and bring in folding chairs. On Thursdays, the weekly support group starts with a sing-along that attracts both current and former clients.
One of the residents reclines on a stretcher while others use walkers or canes. You can hear the faint hiss of an oxygen machine mingling with the jokes and laughter, the teasing and chatting.
Gary Wade, one of the lead staff members, comes into the room with a guitar slung over his shoulder. "Lenny! Hey brother, good to see you man. I didn't know you were coming today … Daniel! Good to see you!"
"Okay, hey how we doing? Is everybody here? Do we need more chairs?" asks Wade, as he strums his guitar and walks around the kitchen.
"What's everybody want to sing? Anyone want to pick one out?" he asks with a smile. Someone calls out with a computer-generated "yes."
"Bones! What do you want to do?" asks Wade. "Want to do your song? 'Country Roads?'"
Bones answers yes using his computer.
"Well alright, brother, lets get on it!" says Wade, beginning to strum the introduction.
Bones, whose real name is Christopher Christian, grins at Gary from his specialized wheel chair. He lost his ability to speak and uses a special computer to communicate.
Gary Wade walks over and bends down to be closer to Bones to encourage him. "Yeah man, I want to hear your voice today, Bones. We've been practicing all week for that."
Soon the room is filled with the sound of nearly 20 voices singing, "Country roads, take me home, to a place I belong…"
"The music is so healing, says Kathy Chandler. "When people come into group, it's beyond words. We have people with expressive aphasia who can't talk, but they can sing right along. And we've seen their speech increasing with that. It's just amazing the peacefulness that it creates."
The music is so healing. When people come into group, it's beyond words. We have people with expressive aphasia who can't talk, but they can sing right along. And we've seen their speech increasing with that. It's just amazing the peacefulness that it creates. - Kathy Chandler
Since 1987, Lenny Burke's Farm has worked with hundreds of people who are coping with brain injuries – something Lenny himself finds hard to believe. "It's amazing to me when I hear we have all these places. I know we do and I can even remember now that we do. But it almost boggles my mind to realize how many places, how many people we're helping and how many places we're doing it. And it's wonderful," says Lenny. "This is why God has me here. This is why I survived my injury."
It almost boggles my mind to realize how many places, how many people we're helping and how many places we're doing it. And it's wonderful. This is why God has me here. This is why I survived my injury. - Lenny Burke
And the positive ripple effects go far beyond Vermont, says Ron Savage. Historically, he says teachers didn't consider traumatic brain injury when assessing a child for special education, but thanks to Lenny's experience, that's changed. "What we're finding out from national studies is that a lot of kids are injured before they enter school, shaken babies, 3-year-olds who take bad falls," Savage says.
Savage wrote the first textbook on how to help kids with T.B.I. do better in school and he pushed hard to ensure federal funding. "Because of Lenny and because of our work in Washington D.C., a group of us were able to get traumatic brain injury added into the special education laws," says Savage. Sen. Robert Stafford, a Rutland-born lawmaker keenly interested in education, helped spearhead the initiative, Savage explains.
"That's why I like the Lenny Burke story so much," says Savage. "We all know that bad things roll downhill. But good things also roll downhill and can spread, and this is one of those stories where you have an extraordinary family, and that family was just remarkable. But then it was everybody within Lenny's inner circle, and then it spread outside there and it just got bigger and bigger and bigger. And this was from my viewpoint, ground zero," says Savage. "Because the Lenny Burke story is the story of how we finally understood the significance of brain injury in this country and a lot of good things have come from it. That's what's really fascinating."
It was everybody within Lenny's inner circle, and then it spread outside there and it just got bigger and bigger and bigger. And this was from my view point, ground zero. The Lenny Burke story is the story of how we finally understood the significance of brain injury in this country and a lot of good things have come from it. That's what's really fascinating. - Ron Savage
Savage says the importance of their work continues today. The issue is resonating with the public because so many U.S. military veterans are being diagnosed with T.B.I. and the dangers of concussion in sports are now more clearly understood.
One million new traumatic brain injury cases are diagnosed in the U.S. every year. Savage calls it a silent epidemic, but thanks to Lenny, he says it's one we're now understanding much better.