On October 1, Brooke Eby died.

If you have spent any amount of time on social media in the last few years, there’s a good chance you knew Brooke. Maybe you knew her as Limpbroozkit. Maybe you followed her ALS journey on TikTok or Instagram. Maybe, like me, you somehow felt like you knew her even though you never actually met her.

She was funny. Wicked smart. Blunt. Warm. Hilarious in the face of things that were anything but funny.

And she had ALS.

And while DM and ALS not the same disease, and I don’t want to pretend they are, there are some similarities that are hard to ignore when you are living inside one of them: chronic illness, progressive disability, loss of abilities you once took for granted, uncertainty about what comes next, and no simple cure waiting around the corner.

So when Brooke died, it hit me.

I was deeply sad, and I was angry. This incredibly beautiful human was taken from her family, her friends, and all of us who treasure her far too soon.

And if I’m being completely honest, for a little while, fear took the wheel. I was thinking about the future in ways I probably shouldn’t have been thinking about it. I was looking at my own life and seeing all of the things that have already changed because of this disease, and wondering how many more things might change.

But today, something else is sitting alongside the sadness.

Gratitude.

Gratitude for Brooke.

Because Brooke didn’t just tell people that ALS existed. She showed people what it looked like to live with it. She made people laugh. She answered uncomfortable questions. She gave people a window into a world they might otherwise never have seen.

She raised awareness, yes.

But she also raised money.

She built community.

She gave people space to talk about things that are really fucking hard.

She made people feel seen.

And she changed things.

The ALS Network called her an advocate, storyteller and community builder. She founded ALStogether, creating a place for people living with ALS and their caregivers to connect and share resources. Her impact wasn’t just measured in followers or views. There were actual people on the other side of what she created.

That’s what has been sitting with me today.

I don’t want to just survive this life.

I want to do something with it.

There will absolutely be days when getting through the day is the accomplishment. I know that. I’ve lived those days. Sometimes the victory is getting out of the chair. Sometimes it’s making it to the bathroom. Sometimes it’s doing one more thing than I thought I could do.

Those days count.

They all count.

But on the days when I have a little more to give, I don’t want to spend that energy being afraid of what might happen next.

I want to use it.

I want to say the thing.

Love the people I love loudly.

Laugh until my stomach hurts.

Make things.

Write things.

Show up.

Be useful.

Be ridiculous.

Take up space.

Tell the truth about what this disease actually looks like.

Make someone feel less alone.

And if I can leave even one tiny corner of this world a little better than I found it, then I want to do that.

Not because I’m fearless.

I’m very much not fearless.

In fact, yesterday proved that I am capable of being spectacularly afraid.

But maybe courage isn’t the absence of fear.

Maybe sometimes it’s deciding that fear doesn’t get to make all the decisions.

And that matters.

It matters to me.

Because I don’t know how much time I have.

I don’t know how much ability I will have next year, or five years from now, or ten years from now.

Nobody really knows that, even if we like to pretend we do.

What I do know is that I have today.

I have whatever ability I have today.

And I don’t want to spend all of it looking over my shoulder at tomorrow.

I want to lean in.

I want to live the hell out of the life that’s actually in front of me.

Not perfectly.

Not every day.

Not in some exhausting, toxic-positivity, carpe diem! way where I’m supposed to be grateful every second and turn every hardship into a lesson.

Sometimes I am going to be pissed off.

Sometimes I’m going to be exhausted.

Sometimes I’m going to cry.

Sometimes I’m going to sit in my chair and do absolutely nothing except watch television and eat something someone else brought me.

And honestly? That’s okay too.

But when I have something left in the tank, I want to spend it on living instead of worrying.

I want to leave it all on the field.

I want to make the laugh too loud.

Love the people too much.

Tell the stories.

Make the impact.

Take the damn picture.

Say the thing.

And have as few I wish I had… moments as possible.

Because Brooke’s death reminded me of something I think I already knew but had forgotten:

The goal isn’t to outrun the inevitable.

The goal is to make sure that, while I’m here, I’m actually here.

Brooke made her life count.

She made people laugh. She made people think. She made people feel less alone. She raised money. She built community. She changed the way people understood ALS.

Her life was bigger than her diagnosis.

I want mine to be bigger than mine, too.

So, Brooke, I am deeply, deeply sad that you’re gone.

And I am so incredibly grateful that you were here.

Thank you for showing so many of us what it looks like to stare down something terrifying and still find room for humor, connection, purpose and a hell of a lot of life.

I’m going to try to remember that.