At the Intersection of Seeing & Believing

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.2017-04-01_final_image Connected by Thread

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


Socializing, Solitude, Silence

Some people are good at socializing and love it. They thrive on the energy of crowds, the swirl of conversation, new faces. Others are happiest hanging out with close friends, sharing meals, warmth, and support – being part of each other’s lives. But for many people with brain injury a social life, public or private, may seem out of reach. It can be isolating, lonely when there’s no one there to listen, laugh with, or comfort. Well, I’m not really the one, the two, or the three.

white-curtainsceiling-nizza-horizI don’t do well socializing, and thrive on solitude. I’ve never been particularly outgoing. My inner life was always as real as the outside world. Now, afloat in the world of brain injury, there’s a disconnect between the two and I find myself by myself on the inside – literally and emotionally.

My home is my nest, my silent space. I relish it. Alone, I can breathe, focus, create.

What I don’t do

I don’t think to myself: “I’ve got free time this afternoon. Wouldn’t it be nice to have coffee with someone?”

I don’t reach out. Never the first to call, write, text. I don’t even like going to the movies.

But I also don’t want to squander the friendships I cherish, or hurt others by my silence.

Sometimes I don’t answer important or personal email. Maybe you don’t either. Meaningful responses take time and quiet to find the words to use, strike the right tone, say enough not too much. I rarely stop long enough to give myself the time to focus. So I put it off. I mark the emails “unread,” they slip down the Inbox or get lost in the Drafts folder. I forget I haven’t replied – distracted again.

I don’t think I’m lonely, just reluctant. Socializing doesn’t come naturally, so I hold back. I know it’s healthier, warmer to have someone in your life – to touch to see to love to share. No surprise that I don’t know how to find that someone.

What’s hard to do

I’ve been told I should go out, take a class, join a group. How to do this? My life already feels over-scheduled. To add one more weekly monthly meeting group engagement is just too much. I am tired. Motivation lacking.

And the world outside is often intolerably loud and chaotic

Personal relationships take an almost physical energy that drains me – knowing when to stop, what’s too much, when I push myself too far. I direct that cognitive effort elsewhere, to a different kind of conversation like writing this blog. Maybe it’s self-preservation, or self-conservation­.

It’s funny that when I’m out in the world no one sees how I struggle. I don’t act anti-social. And I’m not. If anything, I’m over-social, but at an arm’s length. I don’t know why.

I’ll be on a roll until moments before going over the edge. My head hears the WAHWAHWAH continuous background sound that just a few minutes before had been distinguishable voices and words. Suddenly, insistent: “I have to leave. Now.”

But what if, before I slip away, you talk to me, ask a question, tell a story? I jump in, talk back to you, but more. Once started, there’s no stopping myself. I’ve gone too far, exhausted. I need air.

The world outside can be gentle and soothing too.
Alone with no voices, walking not talking, not socializing. Patiently waiting on each corner for the green light, letting the night wash over my head. The absence calms my mind. Once I’m at home, my nest, quietly healing, ideas start dancing in my head. How odd – just when it’s time to sleep.

What I can do

Fatigue sets the rules. It hovers, muddles my vision, words, awareness of time and space. Can I see it coming? I know the signs and when I remember, I stop for a nap.

Next on the list: step out of myself. Make an effort, a plan. Walk with Achilles International, mingle with athletes and guides, ask about their lives, listen to their stories.

Practice saying “yes.” When someone asks if we can get together, “Yes, I’d like that.”

Work with something bigger than me – BIANYS, Rusk, TBI to LIFE. Follow someone else’s schedule, collaborate, learn. But be vigilant. Can I delay to think before speaking? I know only too well that language, tone, actions can sabotage my intent.

I can consciously engage, reach out and care for my own wellbeing – what helps, what hurts – to have the wherewithal to be present for others.

Solitude gives me strength to get through the day. Still. Safe. Restorative.

For now I’m tired. Is that anti-social? I don’t think so, but maybe. If it is, so be it.

Special thanks to Phil Vanaria for his wonderful photos of me dancing.