Brain injuries bind friends who help each other heal

GUILDERLAND — Eight years ago, doctors told Sue Scheerbarth she’d never be able to talk again.

Twenty-one years ago, they told Bob DeSormeau it was unlikely he’d ever be able to return to work.

Two years ago, Randy Dillenbeck couldn’t remember what he ate for breakfast by the time noon rolled around.

Dan Kipp now uses a wheelchair, but, several decades ago, he pulled a fellow soldier from a burning tank, and saved his life.

Tore Lofving was an engineer working for the state’s Department of Transportation until 1992. Now he teaches chess and guitar at an after-school program.

Joe Miranda was in the Marine Corps for four years, but now, in his 30s, he has to re-learn how to read.

All of these people have at least two things in common — they are survivors of traumatic brain injuries, and they belong to a support group called Injury Acceptance Maturation, or IAM.

IAM meets every Wednesday morning at Living Resources, off of Washington Avenue Extension. The private program provides a wide range of services to individuals challenged by a variety of developmental disabilities.

The brain injury support group formed in September 2009, when a few of the survivors started coming to Living Resources early for a different group meeting, and compared notes about their challenges and frustrations, according to Laurie Bosco, IAM’s group leader.

Bosco is employed by Living Resources in its structured day program, and has been working with brain-injury survivors for five years. She said she loves her job, and can’t get enough of it.

“IAM started out as more of a coffee klatch, where the survivors would vent, and get advice and support. Some of them would come in close to tears, and would leave in a great mood,” Bosco said. After realizing how beneficial the venting was, the survivors and Bosco decided to form an official support group.

“Sometimes we only have five people show up; sometimes the room is so packed we need to bring in extra chairs. We have people at every different level of recovery, from two years to 30 years,” said Bosco.

At the group meeting on Aug. 11, it was clear that the survivors are more than just a source of support for each other — they are friends. They tease each other endlessly, but defend and encourage each other, too. They are so proud of each other’s accomplishments. They want all of their stories to be told.

Speaking against the odds

Scheerbarth, a Berne resident, suffered a stroke eight years ago. Before that time, she worked in a Civil Service office, was very social, and took care of everything in her home. Now, she has aphasia, which affects her ability to produce language, and apraxia, which makes it difficult for her to form the movements necessary for speech.

When Bosco first met Scheerbarth, she could only say one word — “no.” Now, despite the fact that doctors told Scheerbarth she’d never speak again, she can form many words, and last week read her story out loud to the group with the help of a speech therapist.

After Scheerbarth finished reading her story, there was a hearty round of applause from the other brain injury survivors. There were pats on the back and words of encouragement.

Motivated to help others

“That was amazing. That was so good,” said DeSormeau. He had a brain aneurysm. In 1989, he was working as a full-time bartender. One day in September, he woke up feeling sick, with a terrible headache, but decided to go to work anyway. He was sent home after he dropped and broke a bottle of liquor because his hands were shaking so badly. Bob’s roommate took him to the emergency room, where doctors discovered a blood clot in his brain.

He had 16 hours of brain surgery to remove the clot. After the operation, he was in the hospital and a rehabilitation clinic for months. Doctors warned him that he might not be able to return to work.

“When doctors tell you that you can’t do something, it just makes you more determined to do it,” said DeSormeau. He returned to work as a bartender nine months after his operation, and continued to work for 10 years, although he said he never felt “quite right.” Now he loves to offer his help to other members of IAM. In fact, he never misses a Wednesday meeting, according to Bosco.

“Bob has shown up here sick as a dog, because he doesn’t want to miss a meeting, just in case there is that one new person who needs his help,” said Bosco. DeSormeau has been in recovery for over two decades, and can offer a lot of advice to those who are relatively new to the recovery process, like Dillenbeck.

Common Frustrations

Dillenbeck, who said he used to be a heavy drinker, was struck in the back of the head with a pipe two years ago, and suffers from short-term memory loss. He had to train his brain to remember simple things, like what he had eaten for breakfast that morning.

“I just repeat things to myself over and over throughout the course of the day, so I don’t forget,” said Dillenbeck. He said his biggest frustration with being a traumatic brain injury survivor is the way people treat him when they find out about his accident.

“They start to raise their voice and speak really slowly, like I’m a child,” Dillenbeck said, as others in the group nodded in recognition. That type of frustration is what many members of the support group vent about.

Then there are those that have had to mourn the loss of their previous lives. It took a while for the group to discover that Kipp was a true military hero, said Bosco. As a soldier in the United States Army, he pulled a fellow soldier from a burning tank, risking his life to save the life of another.

After his motorcycle accident, Kipp uses a wheelchair and has trouble communicating, but one of the first things he proudly announces about himself is that he was in the Army. The members of IAM are quick to acknowledge his pride and tell the story of his feat. Above all, Kipp has retained his sense of humor and spunk.

When Bosco asked what he said to the soldier whose life he saved after he pulled him from the tank, Kipp replied, “Life’s a bitch.” His nickname in the Army, he said with a laugh, was “Asshole.”

About his motorcycle accident, he said, “God tried to kill me, but I was stubborn and I wouldn’t die.”

Miranda, on other hand, said that sometimes he wishes he had died instead of surviving his accident. He was in the Marine Corps for four years, and, when he got out, he worked in construction. He fell 37 feet from a roof to the concrete below, and said, since then, his entire life has been a challenge.

“It’s a non-stop challenge to even have a normal thought process. Easy things become difficult,” Miranda said. After his fall, he said he had to tackle physical recovery first, and then work on the cognitive part. He never envisioned being 31 and living with his parents.

Acceptance

“I would never, ever wish this upon anybody,” Miranda said.

Lofving has been through a similar thought process, though he has been in recovery for nearly two decades, and has finally gotten to the acceptance stage.

A former engineer with the state’s Department of Transportation, Lofving was in a car accident in 1992; he lay in a coma for three months.

“I’ve been through a long restorative process, and a lot of changing of my person. I’m just not the engineer I was; I’ve had to re-create my life,” Lofving said.

Though he no longer considers himself an engineer, he is able to work part-time in an after-school program, where he teaches kids chess and guitar, two things he loves.

“I’m a chess-aholic,” Lofving said. He described IAM as a big family, and said he was one of the first three members. He explained the meaning of the group’s name, Injury Acceptance Maturation. First, there is the injury. Then, there is the struggle for acceptance of the injury, which can include stages of grief and anger. Finally, there is maturation, at which point the survivor can move forward with his new life.

The members of IAM want to make the community aware of the prevalence of traumatic brain injuries, and have organized an event for Aug. 25. (See related story.)

“We have people from all walks of life, at all different levels of recovery, and we just want people to know we’re here,” Bosco said.

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