Godspeed, Brooke Eby: A Spirit ALS Couldn’t Take

Today I learned that Brooke Eby died after her long journey with ALS, amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. She was only 37 years old. Brooke was diagnosed in 2022 after experiencing symptoms for years, and she eventually became an extraordinary advocate for people living with ALS. People.com

I didn't know Brooke personally.

But I felt like I knew a small piece of her because she was willing to let people like me into her life.

I came across Brooke through her social media posts under the name @LimpBroozkit. By the time I started following her, she was already using a wheelchair. I started watching her short videos, then went back, catching up on the journey that brought her there.

And I kept watching.

What ALS Takes Away

ALS is a progressive neurodegenerative disease that attacks the motor neurons in the brain and spinal cord—the nerve cells that control voluntary muscles.

As those motor neurons deteriorate and die, the brain gradually loses its ability to communicate with the muscles.

The muscles weaken. They atrophy. Movement becomes increasingly difficult.

Over time, ALS can take away a person's ability to walk, use their arms and hands, speak, swallow, eat, and eventually breathe independently. There is currently no cure that stops its progression. ALS Association

One of the things that makes ALS particularly cruel is that the beginning may not look like what most of us imagine a devastating neurological disease would look like. Early symptoms can include tripping, difficulty walking, dropping things, muscle cramps or twitching, weakness in an arm or leg, or changes in speech. ALS Association

Brooke's story made that real to me.

She talked openly about the symptoms that eventually led to her diagnosis—things that, had they happened to me, I don't know that I would immediately have connected with something as serious as ALS.

Then I watched what happened afterward.

The Wedding Story I Never Forgot

One of Brooke's stories especially resonated with me.

She talked about going to a wedding while struggling with everything that was happening to her body. She had to wear sneakers. She felt self-conscious. She wanted to leave the reception early.

A friend followed her.

Instead of letting Brooke disappear from the celebration, her friend encouraged her to stay.

Eventually, Brooke's walker became part of the party. People incorporated it into a makeshift limbo line.

Something that could have represented everything she was losing became, at least for that moment, part of the fun.

I understood that story in a way I wish I didn't.

After my amputation, I became incredibly self-conscious. There was depression. There was grief. There was sadness. I realized the body I had lived in for decades had permanently changed.

And I had to figure out how I was going to live in that changed body.

That's one reason Brooke's approach stayed with me.

She wasn't pretending ALS wasn't horrible.

She wasn't pretending she wasn't losing things.

She found a way to talk about those losses with humor, vulnerability, and transparency.

Then I Watched ALS Take More

During the last month or so, I noticed the changes becoming much more apparent.

Brooke needed a lift to transfer in and out of her wheelchair.

She was beginning to set up an eye-gaze communication system.

When she told stories, the animated movements of her arms and hands that had once accompanied her words were no longer there.

ALS kept taking.

Mobility.

Independence.

Movement.

Eventually, even speaking and swallowing became increasingly difficult. TMZ

But there was something ALS never seemed able to take.

Brooke.

Her personality was still there.

Her humor was still there.

Her willingness to tell the truth was still there.

Her desire to educate people was still there.

She didn't allow ALS to define her spirit.

A Quarter as Hard

I live with my own health challenges.

They aren't ALS, and I won't pretend they're comparable.

But watching Brooke changed how I think about living inside a body that doesn't always cooperate with the plans I have for it.

I've written openly about dialysis, kidney disease, losing my leg, prosthetics, surgeries, recovery, and all the strange little indignities that come along for the ride.

Sometimes I make jokes about them.

Sometimes I'm angry.

Sometimes I'm scared.

Sometimes I'm simply tired of dealing with it all.

And that's why Brooke's example meant something to me.

She showed that humor doesn't mean something isn't serious.

Being vulnerable doesn't mean being weak.

And acknowledging what a disease has taken doesn't require surrendering everything it hasn't.

I hope that whatever comes next in my own journey, I continue to fight even a quarter as hard to keep my spirit up as Brooke did throughout hers.

She deserved more time.

She deserved a different ending.

But in the time she had, Brooke made people laugh. She educated hundreds of thousands of people about a disease many of us knew little about. She created a community for people living with ALS and helped others feel less alone. The MoCo Show

And she made people like me stop scrolling long enough to think differently about our own lives.

I never met Brooke Eby.

I'm grateful she chose to share herself with the rest of us.

Godspeed, Brooke.

ALS took your body piece by piece. It never took your spirit.

Touring The Bridge: A Smaller Community and an Unexpected Cookie Inheritance

Today started with taking a car in for routine service, followed by a stop at Sam’s Club, and then another assisted living tour for Mom.

This time, I visited The Bridge in North Charleston.

It’s a smaller community with 65 residents, arranged in a square around an open courtyard. I liked the layout, and my overall impression was more positive than at The Palms.

The hallways were wide, the dining area felt intimate, and the residences seemed well laid out. They weren’t too big, but they had plenty of storage.

After a stop at Sam’s Club, I was especially prepared to appreciate storage. Buying in bulk can make a person look at cabinets differently.

As I walked through, I tried to picture Mom settling into one of the rooms. Where would her things go? Would the space feel comfortable? Could I imagine her heading to a meal and recognizing the people around her?

The smaller community appealed to me. I could picture her getting familiar with the place and finding her people over time.

The location also comes with some recognizable landmarks: Waffle House, Zaxby’s, and Trident Hospital.

I know Trident from having a stent put in and undergoing my retinal surgery involving a silicone bubble. So I’m already familiar with the area, although I would welcome future trips with fewer procedures and more time visiting Mom.

The Bridge is farther from home than the other places I’ve toured. That’s something to consider, especially since I’ll probably make most of the trips while Mom gets settled.

Fortunately, I like to drive.

If she ends up there, I expect I’ll be going back and forth while she develops a routine and gets to know people. I want her to have support during that adjustment, while also having the opportunity to build a life in the community.

And yes, I brought food.

At this point, leaving an assisted living tour without a to-go box would feel like skipping part of the inspection.

I took two lunches: collard greens, Brussels sprouts, mac and cheese, and a chicken thigh.

I’m generally not a dark-meat person. The chicken thigh was okay. The rest was great.

The vegetables had made a much better impression on me this time. After my recent disagreement with peas, I was glad to restore diplomatic relations with the side dishes.

I also received two bags of cookies.

Mom doesn’t want hers.

I respect her right to decide what to do with her own food, especially when those decisions create an unexpected cookie inheritance.

The food matters, of course, but I also left thinking about the size of the community, the dining area, and how well the rooms used their space. I liked a lot about this visit.

I’m still comparing options. A good first impression gives me something to work with, and I want to keep considering what would suit Mom’s needs and preferences over time.

I have at least one more community to tour in a few weeks.

For now, The Bridge gave me another option I feel good about exploring—and more to share with Mom and the family as we work through this together.

Today’s errands covered car maintenance, bulk shopping, assisted living, and lunch.

The cookies were an unplanned development. I’m handling it.

After Dialysis, Assisted Living Tours and Complaints: I Need the Ocean and Bacon

Today was one of those days when my internal battery was already flashing red before I walked through the door.

After dialysis, I toured The Palms, an assisted living facility I'm considering for Mom.

Today's dialysis was a little more difficult than Monday's. By the time everything was finished, I didn't even make it to my recovery meeting.

Instead, I had another mission:

Deliver Mom's dinner.

Ham, grits, and peas.

Gross.

I'm sure someone loves that combination. That someone is not me.

So, after dialysis and touring The Palms, I headed over to the skilled nursing facility with Mom's meal.

And then the complaining began.

Apparently, Everything Is Terrible

It was nonstop.

The food.

Physical therapy.

Nursing.

This.

That.

Something else.

At times, Mom was saying things that, from my perspective, didn't line up with what had actually happened. I've experienced that before with both of my parents, and today I didn't have much energy left to sort through what was accurate, what was frustration, and what might have been something else entirely.

I could feel myself reaching my limit.

That's when H.A.L.T. popped into my head.

Hungry.

Angry.

Lonely.

Tired.

I was feeling three out of the four.

I'll let everyone guess which three.

Actually, don't think about it too hard.

The important part was recognizing what was happening before I allowed myself to get dragged into an argument that wasn't going to accomplish anything.

See You Tomorrow

I finally told Mom I was going to leave and that I'd see her tomorrow.

Tomorrow, I'm touring another assisted living facility.

Her response?

“Don't come.”

My response?

“See you tomorrow.”

At this point, it felt less like a discussion and more like defiance.

Ugh.

Yesterday, I wrote about needing to establish boundaries. Today was another opportunity, actually, to practice one.

I didn't argue.

I didn't address every complaint.

I didn't stay there until I was completely exhausted and angry.

I left.

Sometimes that's the healthiest option available.

I'm Still Doing the Work

The frustrating part is that behind all these conversations, I'm still trying to do what Mom has said she wants.

She wants assisted living.

So I'm touring assisted living facilities.

I'm looking at rooms.

I'm learning about services.

I'm figuring out costs.

I'm asking questions.

I'm trying to imagine what her life might look like in each place.

Then I walk into the skilled nursing facility and hear complaint after complaint about the place she's currently living.

I understand that she's frustrated. She's been through a lot.

But I've been through a few things myself.

Today alone started with dialysis, moved into an assisted living tour, and ended with me delivering ham, grits, and peas while listening to a review of practically every department in the building.

Eventually, the tank is empty.

Mine was empty.

So I went home.

Tomorrow, I'll get up and do it again.

Another facility.

Another tour.

Another visit with Mom, regardless of today's “don't come.”

And hopefully another reminder to myself that I don't have to solve everything in one day.

I Need the Ocean and Bacon

Fortunately, I have something waiting for me at the end of October.

I'm going on a cruise.

And after the last few weeks, I think I've identified exactly what I need:

The ocean and bacon.

Lots of ocean.

An unreasonable amount of bacon.

Maybe I'll sit somewhere, looking out over the water, holding a plate stacked with bacon and doing absolutely nothing for anyone.

No assisted living tours.

No skilled nursing complaints.

No ham, grits, and peas.

No problem-solving.

Just me, the ocean, and enough breakfast meat to concern a cardiologist.

But first, tomorrow.

Another assisted living facility.

Another visit with Mom.

Because even when she says, “Don't come,” sometimes I know what she really needs is for me to keep showing up.

So...

See you tomorrow, Mom.

Touring The Palms: Nice Grounds, Friendly People, and Unfortunately, Peas

After dialysis today, I toured The Palms as I continue looking at assisted living options for Mom.

Dialysis followed by a facility tour makes for a full day, but I’m learning something useful at each stop. Seeing these places in person gives me a better sense of what daily life might look like for her—and what the differences are beyond the monthly price.

The Palms is in a building that’s about 50 years old and is being renovated. I learned the HVAC system was recently updated and needed adjustments to work properly.

I appreciate hearing about those details. Renovations are part of the picture, and I want to understand both what’s already been done and what’s still being worked on.

Compared with Somerby, The Palms didn’t feel as open and airy to me. It has a different atmosphere, and I noticed that as I walked through the common areas and rooms.

But I also noticed friendly staff and people who seemed happy.

That was only my impression during one visit, but it matters to me. I’m trying to imagine Mom living somewhere, spending time with people, asking for help, and finding a routine. A place's feel includes the people in it.

The grounds were another positive. There were trees, shaded paths, and places to sit outside. After recently spending time outdoors with Mom at the skilled nursing facility, I could appreciate having pleasant outdoor space available.

Then came the food.

You knew I was getting there.

In my opinion, the meal wasn’t as good as what I brought back from Somerby. And there were peas mixed with the corn and carrots.

Peas.

The corn and carrots had been doing perfectly well without that kind of interference.

I understand some people enjoy peas. I respect their right to be wrong at lunch.

My personal vegetable grievances aside, food is still an important part of this search. Mom has made her opinions about facility meals very clear, and I want to pay attention to what she might actually enjoy eating.

One meal gives me a sample, and this sample didn’t impress me as much as Somerby’s did.

The Palms does have another meaningful difference: it costs less per month.

That deserves consideration. These are substantial ongoing expenses, and I’m trying to weigh the cost alongside the setting, the people, the food, and how well a place could meet Mom’s needs.

So my impression today was mixed, with some real positives. The building is older and undergoing updates. The interior felt less open than Somerby. I preferred Somerby’s food. But the staff was friendly, the people I saw seemed happy, the grounds were nice, and the monthly cost was lower.

I’m glad I went.

I’ve also been sharing my thoughts with my brothers and their wives, and posting pictures in a shared Google Drive so everyone can see what I’m seeing. I want them included as we think through the options for Mom. The photos give us something concrete to discuss, and their perspectives help me consider things I might have missed. My opinion of peas, however, is already firmly established.

Each tour is helping me figure out which questions to ask and which details I want to bring back to Mom. I want her involved in thinking about where she could feel comfortable and what matters most to her.

Tomorrow, I tour another place.

I’ll keep asking questions, looking around, and tasting the food.

And quietly hoping the vegetables have made better decisions.

When Helping Mom Means Setting a Boundary

This afternoon, I got frustrated with Mom.

Really frustrated.

It was lunchtime at the skilled nursing facility, which meant it was also time for one of Mom's favorite activities whenever she's in an institutional setting:

Complaining about the food.

Her favorite word seems to be “terrible.”

She uses it a lot.

More than a lot.

Today, though, the frustration wasn't just about whether lunch deserved another terrible review.

While Mom ate, I stood in the hallway when one of the CNAs approached me. She brought up several concerns.

Mom isn't eating enough. She wants to go to sleep immediately after eating, even though she's been told she needs to remain upright for at least 30 minutes. Her stomach hasn't really settled since her second stroke. She's also frustrated because she says it sometimes takes too long for someone to respond after she pushes the call button.

There may have been a few other things mentioned that I'm forgetting.

I understand the complaints individually.

Put them all together, though, and I started getting frustrated.

What Does Mom Actually Want?

We've talked about this before.

Mom doesn't want to go home. She wants to leave skilled nursing and eventually move into an assisted living facility.

I'm touring two assisted living facilities this week to help make that happen.

But I explained something to her again today: moving to another facility won’t necessarily solve everything she doesn't like about this one.

There will still be other residents.

Staff will still care for multiple people.

There will still be menus she doesn't control.

There will still be times when she pushes a call button, and someone doesn't magically materialize next to her bed.

That's part of the compromise that comes with choosing a facility over living at home.

At home, she could have significantly more control over what she eats, when she eats, when she goes to bed, and many of the other things she's frustrated about now.

She doesn't want that option.

I respect that.

But choosing another option means accepting compromises.

And that's where we weren't getting anywhere today.

I'm Not Going to Chase the Impossible

I finally told Mom something that may have sounded harsh.

I'm not going to put in all the work required to find another facility, arrange everything, deal with the finances, move her, and get her settled somewhere else if we're going to repeat the same cycle.

New building.

New room.

New staff.

New food.

Same word:

“Terrible.”

I'm willing to help her find a place where she's safe, comfortable, and treated well.

I'm willing to tour facilities.

I'm willing to ask questions.

I'm willing to work through the financial issues.

I'm willing to help her get where she says she wants to go.

I can’t guarantee she’ll like everything.

No facility can do that.

I Had to Remove Myself

Eventually, I realized the conversation wasn't accomplishing anything.

I was frustrated.

She wasn't changing her position.

I wasn't changing mine.

Continuing the conversation would only make both of us more upset.

So I told her that I needed to remove myself from the situation.

That's a boundary I need right now.

There is a difference between helping someone and taking responsibility for making them happy.

I can help Mom.

I can't manufacture happiness for her.

And I can't keep running from facility to facility looking for a place where absolutely everything will be exactly the way she wants it.

Then There's the Money

There's another practical reality.

Assisted living costs money.

Potentially a lot of money.

If Mom is going to be unhappy regardless of where she lives, I have to ask a difficult question:

Why spend a significant amount of her money changing locations if the result will be the same dissatisfaction?

That's where my mind went today.

If she's going to be unhappy in assisted living and unhappy at home, then financially, being unhappy at home is considerably less expensive.

That doesn't mean I've decided she needs to go home.

It doesn't mean I'm abandoning the search.

I'm still touring the facilities this week.

But I am starting to recognize that finding Mom a new place to live and finding Mom a place where she'll never complain are two completely different assignments.

I can work on the first one.

The second one isn't mine.

Today, I needed to remind myself of that—and walk away before frustration took over the conversation.

Tomorrow is another day.

And apparently, somewhere out there, I still need to find a facility whose food doesn't earn the word “terrible.”

Wish me luck.