Don’t Be Fooled

Please.
Don’t keep saying I am so strong.
Don’t tell me how far I’ve come.
There is so far I have yet to travel.
To be honest with you, I am not the role model you imagine.

I can act cocksure, talk up a storm
As if I have the answers at my fingertips.
But that is just my way.
Don’t let it fool you.
I know facts, theory, skills. Teaching is an option.

But first I need patience to listen,
courage to hear, and of course self-awareness
to keep my ego at bay.
​So don’t look for inspiration in my heart, my journey.

It is no more inspiring than you​r path has been​.​
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Sometimes I feel like a motherless child,
Despite having a mother,
being a mother,
and having been held up by gentle hands.

I can’t hold up anyone, anymore.

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.
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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.