The other day I was rereading my most recent blog post, Socializing, Solitude, Silence. It left me with a nagging doubt: is my self-image as a loner born out by my behavior? I really do prefer solitude to socializing, yet each month I go out of my way to attend the New York City BIANYS Chapter meeting and my local brain injury support group. For some reason or other I’m drawn to these groups despite my inclination to push away. Why the disconnect between what I feel and what I do?
That uncertainty was percolating in the back of my mind as I mulled over this as-yet-unwritten post. As I jotted down ideas, organized my thoughts, and started to write, it all began to gel. What I clearly needed was to unearth the reasons behind that disconnect and set my doubts to rest. In the process I started to explore some deep, even universal feelings.
[Why have I suddenly become so philosophical?]
I believe there is a thread that connects brain injury survivors to each other. It cannot be seen, but is felt – heart felt – when we discover each other. The strands interweave – loss of self, isolation, physical and psychic pain, and the glimpse of mortality. I know we are not special in this regard. All humankind share not one thread but many. Every single person has struggles that echo our own, and no one gets through life unscathed.
But although our challenges may seem similar to there is a difference – a moment in time. The instant brain trauma occurs one’s singular life is sundered in two: a “before” and an “after.” You’re faced with a profoundly unsettling battle between your “selves.”
Why me? Because.
Where have I gone?
To a place most people have never been.
Who am I now? You are you, but different.
What can I do? Be patient
When will I return?
There’s no going back.
Brain injury is clearly an existential crisis. But we have to remember that the real crisis is organic, caused by a physical injury to the brain. In that respect, it is no different from any other disability, although it’s often invisible.
In the world outside our world, most people just don’t get it (except some, who do). Consensus has it that seeing is believing, which is a problem when you have an invisible injury. You may “look great” but that doesn’t mean you are “great,” or even okay. Some may think you’re a hypochondriac, lazy, or malingering. Others may tell you to “look on the bright side” (I’m know, I’m lucky. I could be dead), “stop wallowing in self-pity,” or “just get on with life.” If people can’t “see” you, they can’t believe you.
I really just want to be visible; to be seen for who I am: “great” even when I’m not, just because I’m still trying. Maybe that’s why we gather each month away from the outside world: to be seen, believed, understood. As much as they don’t get it, we do, and can accept the weird, annoying, and even funny stuff that comes along with brain injury. That validation is a breath of fresh air. It’s what keeps me showing up and eager to join in. Even though I don’t like socializing, even if I prefer solitude.
These small, self-selecting groups are like a prescription I need to refill every month. Each meeting is an antidote to the risk of believing those who don’t believe me. The more I think about it, the more I realize that there is not a disconnect between what I feel and what I do. The monthly meetings are more than just socializing. They help me stay connected to the reality of brain injury, and keep me on an even keel in the face of that reality.
Being believed, even if you’re invisible, is being seen.
PS: Who gets it? A friend I hadn’t seen for years, long before my TBI. She asked questions (good ones, although I can’t remember what). She listened, without judgment or telling me how to make it better. She still saw “me,” while asking what changed and how. “It sounds so hard,” she said, “of course I can’t really understand, I’m not living it.” But she did understand. She “got it,” just like that. Not everyone needs to see before they can believe.
Illustration (c) 2017 Max Rippon