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!


Why am I here? (Me in a nutshell)

Without getting into the philosophical (and existential and personal) entanglements this question provokes, I’m here on this blog because I’ve got a narrative to share. I mean, really, everybody has a narrative to share.
Our narratives are our identities, and they’re composed of hundreds of stories. Good stories, bad stories, sad, awful, and beautiful stories. I’m guessing you have stories for each of these categories. So do I.
Here’s a little outline of my life so far – stories that have played a part in my unfolding narrative, and I’m hoping to share more of them with you through this blog.
Pre-July 2001:
Fairly “normal” childhood, one that I look back at with fond memories.
July 11, 2001:
AVM brain injury. Paralysis on the left side of my body and double-vision in my eyes. Lucky to be alive.
A world of hurt. Thankful for my family and to be alive, mixed with being completely lost, abandoned by friends, struggling to know who I am. Anybody else feel like high school is just the worst?
The fun college years. Experiencing acceptance and love from friends for the first time. Still unsure of my identity, insecure from the AVM.
In the hospital for multiple pulmonary emboli (PE), pneumonia, mono. Complicated procedures and treatment because of the AVM. Finding out I also have a blood-clotting disorder (Factor IV Leiden). Lucky to be alive. Again.
A pretty good year. Grad school.
Early 2014:
Family tragedy. Sorrow and the deepest grief I have ever felt. Deeper than the sadness I experienced having no friends for eight years or even suffering the brain injury.
Self-discovery, self-forgiveness. Understanding my brain injury as part of who and how I am, but  not what I am. Trying to remember that every day.
A lot’s happened to me for my tender twenty-something age, but I’d like to think the positive has outweighed the negative.
More to come – thanks for stopping by!