Typically, when a Brain Injury Survivor or their loved one calls the Brain Injury Association of Massachusetts (BIA-MA), he or she is hoping to find out information about community-based services, potential rehabilitation or housing opportunities, the location of support groups or even just needing to talk to someone who understands what is going on in his or her life.
What these individuals may not realize, though, is that the person that is connected with them on the other end of the phone line has a high probability of being a brain injury survivor. Therefore, the people that are available to provide information and resources have firsthand experience with brain injury themselves. Many who aren’t survivors of brain injury have loved ones who are.
One office, in particular, the western region office in Pittsfield, Mass., is staffed completely by survivors of brain injury, two of whom were not diagnosed until many years post-trauma.
“On a snowy day in 1992, I was traveling to Lake Placid from Pittsfield for work when I was hit by a truck,” says Western Region Manager Suzanne Doswell. “For those of us with closed-head injuries, if we have other problems, which I did, the medical community deals with those first on a triage basis. I was not diagnosed with a brain injury until four years later.”
Helen Stewart, a longtime psychiatric nurse, suffered her brain injury at work when she slipped on some uneven pavement walking into a work meeting with her colleagues. “I don’t remember much about it, but I ended up being discharged and driving home that night,” says Helen, Information and Resources Outreach Specialist. “After a few days, my colleagues realized I was acting different and my boss told me to stay home. I ended up buying so many pairs of nice black pants because I knew I needed them to go back to work. I couldn’t figure out why I had so many pairs…it’s because I kept forgetting that I already ordered them.”
Scott Doane, the Western Region Office Administrative Assistant, suffered his brain injury in a car accident in 1967 at just seven years old. He suffered significant frontal lobe damage and was paralyzed on his right side, slipping into a coma for three weeks. He found himself wanting answers to questions he’d had throughout his life about his brain injury and the car accident that caused it. He had been working as a case manager in human services for the majority of his career and worked with many not unlike himself.
These three individuals have one thing in common: they came to BIA-MA through the Berkshire Brain Injury Support Group (BBISG) as a facilitator, or support group member. Suzanne began her affiliation with the group in 1994, while Scott joined the support group after frequenting the BIA-MA western office nearly seven years ago. Helen, after strong advice from her neurologist, came quietly to the BBISG.
Jeff Robinson, the Western Region Office faithful volunteer, is one of the founding members of the BBISG—when his mother, searching for answers about her son’s TBI, joined together with other parents of brain injury survivors and created the now longest running support group in Massachusetts. He volunteers four days a week at the office and assists with events.
“I think it’s apparent when we talk on the phone. I will say, ‘I understand because all the people in this office have brain injuries.’ Then, you hear them sort of sigh in relief. Their whole demeanor sort of changes on the phone,” says Suzanne.
“It adds validation. Once you give them that permission that it’s okay to share stuff, it’s like, Boom, our conversations then go for 30 minutes to an hour,” says Scott. “I think it reinforces that I know what I’m talking about because I’ve been there before.”
“And that is the rule rather than the exception when you’re talking with survivors,” says Helen. “I think our office is a pretty talented office. I was a nurse for my career, Scott was a social worker—we all add something to the office dynamic. Scott and I could both participate on a different level knowing our shared backgrounds around the note of, ‘maybe I can use my experience to help transform other lives.’ We could integrate our own personal experience with the idea of helping others.”
“We have this extraordinary team. One day, one of us may be having difficulty with cognitive issues, or may have had a difficult night of sleep, the others pick up on that and we know we need to do work to pick up the slack that day,” says Suzanne. “When someone walks through the front door, none of us hesitate to help that person. It’s not just one person who stands out as the optimum person in the office—we’re all better together, helping survivors of brain injury every day.”