My people: The brain injury society (Findings, part II)

When Melanie didn’t benefit from the support groups from SBIF, she sought other groups and went to great lengths in search of the proper support she needs.  When she couldn’t find people with brain injuries, experiences, or age similar to her own, she went online to find support groups that better suited her.

(No big surprise. That’s what we’re doing here.) But, she tells me:

I‟ve done art therapy for brain injury survivors.  I read their stories online, watch documentaries, and email with people who have suffered TBI.  I’ve never even met them, but they understand.

“As much as my friends and family try to understand and be supportive, on some level they still don’t get it because they haven’t been through it and they can’t relate. Hearing others speak about their injuries helps me understand mine better. I think it also gives me hope that I will continue to improve.”

When SBIF’s support groups didn’t suffice, Melanie continued her pursuit for social support. She’s thankful that the Internet has put her in touch with others who have similar experiences to her own and are also in the same phase of life.

“It helps to know that there are other women like me, who are my age, you know,” Melanie continues, “dealing with TBI while simultaneously managing everything else we experience at this age.”


On recovery from brain injury and why it matters

Brain injury survivors are the first of their our kind. Did you know that? We make up the first generation of people who survived brain injuries, simply because the technology didn’t exist 30-40 years to save people who endured them.

It’s crazy. It’s astounding. It’s also pretty cool to be part of this unfounded-until-now culture.

Yet in countless other ways, it’s also extremely hard. Society – friends, family, strangers, hospitals, the health care system – doesn’t know how to deal with us, how to give us social support, even how to understand us sometimes.

Which I get. We’re in an extremely complex situation here, dealing with physical, mental, and emotional states that will differ from person to person, from injury to injury.

And that’s what spurred the research I did for the thesis in my master’s program. All of our situations are so complex, disparate yet intertwined and entangled by one common factor: brain injury.

I mentioned before that middle school and high school were rough for me, but rough is a bit of an understatement. It was a terrible time. I had little social support, and the group of friends I once had completely abandoned me.

Adolescent years are, in so many ways, selfish and agsty, so I’m not saying I was the only one with issues or the only one who felt “misunderstood.” Please, we all listened to enough emo music to relate to that feeling.

But I did have a hard time – I was recovering from a brain injury that should’ve killed me, for crying out loud! Nobody (outside of my family) knew what to do with me or how to even act around me.

For the first time in my life I felt something that later became eerily familiar to me: feeling completely the same on the inside but being treated like I was completely different (for the worse) in every way.

Since recovering from brain injury is unprecedented, it’s largely misunderstood (not only by teens, but also by society). And for some of us, the effects of our injuries are long-lasting, so we will never achieve what society calls “full recovery.”

Back to my thesis research. I wanted to hear other brain injury survivors’ narratives (remember, narratives = identities) and the stories that make up those narratives.

I interviewed seven survivors and recorded what they shared with me. In total, I held 16 interviews, and my thesis came to about 100 pages. Within those narratives, I found four significant, common themes that seem to make up the trajectory of recovering from and adjusting to life after brain injury.

I’m sharing those themes here, and hopefully buried among the simultaneously heart-wrenching and heart-warming lines something will strike you. Whether it’s good, bad, or mundane, hopefully your own narrative comes to mind, and hopefully you’ll share some of it with me!