The First Time (Lately)

There’s something strange about doing things for the first time again — not because you’re young or new to the world, but because your body has changed, and the rules have changed with it.

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The first time I stayed alone in a hotel overnight

I triple-checked that my Life Alert was charged. I shared my location with everyone and their brother. I laid in bed with a buzzing brain and a body that had already decided it was done for the night.

It wasn’t dramatic — just deeply quiet.

I wasn’t scared, exactly. But I wasn’t settled either.

I felt capable. I also felt… fragile.

The first time I flew post-diagnosis

I’d forgotten how many steps it takes to get from curb to gate. How many times you stand, walk, lift, move.

I used my wheelchair exclusively in the airport and pre-boarded — something I never thought I’d do — and for the first time in my life, I didn’t feel guilty about needing the help.

I still cried in the bathroom stall when we landed.

Not because I was in pain (though I was).

Because I did it.

And also because it was hard.

Both can be true.

One year of not driving

It’s hard to explain how surreal it is to lose access to something so ordinary. Driving used to be second nature. Now it’s a calculation: risk, energy, and whether my nervous system feels like cooperating.

Each time I have a seizure-like episode, the six-month countdown to start driving again resets. Eventually, after a lot of thinking (and some tears), I decided to sell my car.

It was both a relief — letting go of the what-ifs — and a gut punch. A quiet acknowledgment that, for now, I’m not going anywhere on my own. Not beyond my little radius. Not without help.

Not driving — not having a car — has required some creative problem-solving.

It’s meant dependence: on neighbors, coworkers, kind people who say, “I can swing by.”

It’s meant more biking, more planning, and sometimes more isolation than I’d like to admit.

It’s also made space for slowness I didn’t know I needed.

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Living with dynamic disability isn’t just about symptoms.

It’s about re-learning the world around you — one unexpected “first” at a time.

It’s about figuring out how to do things differently, and mourning how they used to feel.

It’s about resilience that’s not always loud or impressive — but steady, thoughtful, and earned in quiet, everyday ways.

Some days, I’m in awe of how far I’ve come.

Some days, I’m bitter that this is how it has to be.

Some days, I build a new system to make life easier.

Some days, I take a nap and call that progress.

There’s no perfect bow to tie on this.

No big moment of revelation.

Just this truth:

I’m still here.

Still learning.

Still showing up.

And that counts for something.