Losing Yourself — Perhaps Never to Be Found

When asked to define yourself, most people instinctively respond, “Me.” Maybe even with a shrug or a sarcastic, “Duh.” But few of us pause to consider the two distinct pieces that make up the whole.

One useful way of thinking about ourselves is as two connected parts:

• The physical self – the part of us that moves through the world.
• The narrative self – the story we tell ourselves about who we are, shaped by our past, our values, and our experiences.

My stroke fractured that balance.

Locked-in Syndrome quite literally stole part of me—part of the physical self that once danced, hugged, worked, and moved freely. What followed was a long, spiraling journey through grief. But as anyone who has grieved deeply knows, there is no straight line through sorrow.

Some days I cry.

Some days I rage.

Other days I bargain—mostly with God—trying to extract meaning from the unfairness.

And sometimes I sink.

Acceptance, though? I don’t know if I’ll ever arrive there.

Triggers come without warning. A song, a movement I once performed instinctively, or simply watching life play out around me while I remain a passive witness—it all cuts deeper than I often let on.

Lately, I’ve been consumed by thoughts of my daughter Lydia’s upcoming 16th birthday. Such a milestone should be joyful. Marked with gifts, cards, gestures. But I can’t provide even the smallest token. And while I know she’d say, “It’s okay, Dad”—it doesn’t feel okay to me.

There’s a whisper in the back of my mind: How many more of these milestones will I get to witness? Maybe that’s just something that comes with age. But it lingers.

Then Came Fire. And Then, Rain.

Not long ago, something terrifying happened. But strangely enough, it came bundled with unexpected grace.

Let me set the scene.

My wife Jonell, our daughter Lydia, and I live just off the beaten path—bordering the wild edges of the Mark Twain National Forest. It’s beautiful, remote, and yes, a bit impractical for someone in my condition. I like to joke, “It’s not the end of the world, but we can see it from here.” (Cheesy, I know. But true.)

One windy night, despite warnings, someone nearby decided to burn trash. And in this dry, forested place, that was a dangerous gamble.

A fire broke out.

Flames crept within 100 yards of our home. Smoke thickened the air. The fear was real. Someone was moments away from physically carrying me out when, suddenly—

it poured.

For five unrelenting minutes, rain slammed the earth harder than anything we’d seen in over a decade here. It was just enough. The flames hissed and vanished. A miracle.

But not without consequences. The smoke overwhelmed me, and I ended up in the ER.

Help Arrives in Strange Ways

That’s when the next surprise came.

The paramedic who brought me home, Amy, recognized me from a previous ride. As we chatted, she mentioned an organization that might be able to help families like ours.

Three days later, the director of that organization—Tony—and a compassionate nurse came to our home. They listened. They cared. And now, for the first time in a while, it looks like we’ll receive some of the support we desperately need.

That day, there were 22 fires burning across our region. But thanks to brave firefighters, a perfectly timed storm, and a few unexpected angels in uniforms, we were spared.

Yes, we lost some trees.

But we gained something far more important:

Hope.

Connection.

And the reminder that grace sometimes comes disguised—in rain, in strangers, and in conversations you never expect.

Let that be the story we tell—the one where love finds its way through the smoke.

This essay was previously published on Medium.