By Elizabeth Hovde
A man sat in a conference room at Portland's Legacy Good Samaritan Hospital on a recent weekend morning and shared his relief at being around others who knew exactly what he was going through: "I'm wondering how people are telling my story out of my head," he said. "I feel like I belong to something."
"You do," responded others at the monthly traumatic brain injury (TBI) support group called BIRRDSong. They gave him jazz hands instead of regular applause, as sudden noise is uncomfortable for some with traumatic brain injuries.
March is Brain Injury Awareness Month, declared by Congress in 2009 to bring focus to the injury. I was researching and planning to write about proposed legislation related to brain injury when I read a post in an an online recovery group that changed my direction.
"My husband Glenn has suffered from a TBI since 2011," a woman named Kimberly wrote. "He lost the fight Tuesday when he took his own life. Depression and anxiety took its toll." She went on to urge fellow caregivers how critical it was for survivors to be in a support group.
Glenn got a TBI the same year I did, and I couldn't get him out of my head. His wife said I could share her post to amplify the reminder that connecting with peers dealing with the same invisible injury could be as valuable to the TBI community as is more medical research and preventative efforts.
Traumatic brain injury can leave you feeling like a stranger in your own body. And it is not understood or recognized by many. Since a lot of us look normal, it shouldn't be too surprising that many assume we're fine after our life-changing, sometimes near-fatal events.
Some tell us to "move on" or that we should have already overcome hardships related to our injuries. Even well-meaning people unknowingly minimize the injury's lingering effects. They compare forgetting the name of someone at a dinner party to our memory struggles. But some of us forget, regularly, why we went into another room. We forget if we've eaten lunch or why we're in a car and where we're going. Brain injury can be confusing, time consuming, tiring and anxiety causing.
In a society where people thoughtfully accommodate others' gluten allergies and rightly celebrate breast-cancer survivors with fun runs and pink ribbons adorning athletic wear, the way brain injury is treated is curious. You don't typically hear people suggest that cancer survivors "move on" or are milking their misfortune, but brain-injury survivors often receive doubt, annoyance or impatience.
That's one reason TBI support groups are refreshing. No one doubts you when you say your new normal is hard. Instead, you get jazz hands. Being understood -- and feeling you belong -- ranks up there with gratitude and laughter as some of the best medicine available.
"Oregon has more TBI support groups per capita than any other state," Sherry Stock, executive director of the Brain Injury Alliance of Oregon, told me. Joan Miller, a brain-injury survivor herself, co-founded this particular Portland group in 2003. She says she wanted survivors to have "a safe place to fall."
A young adult at March's BIRRDSong said college was becoming too much for her to manage. A man next to her described having to retire early from his career as a trial lawyer. Another woman told how she ended her work as a teacher after traumatic brain injury.
The pace of a former workplace can be too much. Studies show many survivors don't return to full-time work or can't return to the work they're trained for, affecting confidence levels and finances. For many living with a TBI, detailed plans for daily life are vital and "multitasking" becomes a swear word.
Several at the meeting discussed the pain and discomfort associated with relationships that changed after their injuries. Many survivors lose the energy to be the giver or provider they once were, thereby changing - and sometimes losing - friend or family connections.
Memory problems can mess with a relationship's convenience or strength. Some can't drive, limiting social opportunities. Others lose the filter that keeps most of us from letting a host know his food was bad.
"I think one of the biggest interferences for recovery has to do with the public's lack of awareness regarding the complex nature of a brain injury and the ongoing invisible struggles. There can be a lot of social shame and pressure surrounding an injured individual who 'looks' well," one of the survivors who attended the group told me.
Being misunderstood can be isolating. Survivors should know there are places, like BIRRDSong, where they can go for a good dose of support. Sometimes, all it takes is a show of jazz hands from people who know exactly what you're going through to know that you've found a safe place to fall.
Elizabeth Hovde's column appears on the fourth Sunday of the month.