Prepared For The Unprepared

dancingwithalsandlife.blogspot.com

AI ART, “The Storm” 

There are some things in life I just don’t think about until I have to.

Before ALS, a power outage was mostly an inconvenience.

No lights.
No TV.
Maybe no Wi-Fi.

We’d grab a flashlight, open the refrigerator as little as possible, and wait for the power to come back on.

Simple, right?

Well… not exactly when you’re living with ALS.

Just recently, I experienced a power outage that lasted for several days. And let me tell you, when you’re living with ALS, losing electricity for that long is a whole different experience.

People tell me I’m always thinking ahead. And that’s usually true… until the next thing pops its ugly head up and reminds me that maybe I’m not as prepared as I thought I was.

And that got me thinking:

What would happen if the power went out right now?

Well, now I know.

When the Power Goes Out, Everything Changes

So much of what I use every day depends on electricity.

My Permobil power wheelchair needs to be charged.
My electric medical bed needs power.
My lift recliner needs power.
My toilet lift needs power.
My electric bidet needs power.
My Alexa controls things around the house, like turning the lights on and off.

And then there’s my phone and iPad. Let’s be honest, they’re pretty important to me. Voice commands and technology help me do things my hands and arms no longer easily allow me to do.

And then there are all the everyday things we don’t think about until they’re suddenly unavailable.

The refrigerator.
The coffee pot.
Lights.
Heating or air conditioning.
Communication.

And the list goes on.

It’s amazing how much of our daily lives quietly depends on that little stream of electricity coming through the wall.

Until it doesn’t.

The Domino Effect

The biggest thing I learned during those several days without power is that a power outage isn’t just one problem.

It’s a domino effect.

One thing stops working, and suddenly it affects something else.

If my wheelchair isn’t charged, my mobility is affected.

If my bed isn’t working, getting comfortable and repositioning becomes much more difficult.

If my toilet lift isn’t working, something as simple as using the bathroom becomes a whole different challenge.

And if the bidet isn’t working… well, let’s just say ALS has already taken enough from me. I’m not interested in giving up that little bit of independence, too!

Sometimes you have to laugh.

Because if you don’t laugh, you might cry.

And I’ve already got enough going on without adding unnecessary crying to the schedule.

The Bedside Commode

During the outage, something as ordinary as going to the bathroom became a major logistical event.

Without electricity, equipment that normally makes things safer and easier may not work. Like my electric toilet seat lift, because my legs are weak.

That’s where the good old-fashioned bedside commode comes in.

Not exactly the glamorous side of life. Nobody puts that on Instagram!

But when you have ALS, you learn pretty quickly that function beats glamour every single time.

Even if I hate it.

You use what you have.
You adapt.
You figure it out.
And then you move on.

What About My Wheelchair?

My Permobil isn’t just a chair.

It’s my mobility.
It’s my independence.
It’s how I get from one room to another and how I participate in life.

And yes, my wheelchair already has enough personality without adding a power outage to the mix!

When the power is out for several days and the batteries can’t be charged, that independence can disappear pretty quickly.

That’s a scary thought.

Not because I’m afraid of being inconvenienced.

It’s because when my body is already losing strength, electricity becomes part of my ability to function.

That’s a completely different way of looking at a power outage.

So, Am I Prepared?

Well… I’m working on it.

Because I’ve learned that being prepared doesn’t necessarily mean having every possible problem figured out.

It means recognizing the problems before they happen and making a plan.

After experiencing several days without electricity, I’m looking at things a little differently.

We’ve talked about getting a generator that can keep the important equipment running.

Not necessarily every appliance in the house.

Just the things that matter most.

My wheelchair.
My bed.
My bathroom equipment.
My communication devices.
My refrigerator.

And yes…

The coffee pot.

Let’s not get crazy here.

Coffee is an emergency, too.

At least in my house it is. ☕️

The Question I Keep Asking

I used to think being prepared meant having a flashlight, some batteries, bottled water, and a few cans of food.

Now my emergency checklist looks a little different.

Can I charge my wheelchair?

Can I use my bed?

Can I safely use the bathroom?

Can I communicate with someone if I need help?

Can I turn on the lights?

Can I keep my phone charged?

Can I keep the refrigerator running?

Those are the questions that matter to me now.

ALS has a funny way of changing the definition of prepared.

The Reality of ALS

One of the hardest parts of ALS is realizing how many things I once took for granted.

Standing.
Walking.
Using my hands.
Doing things without assistance.

And now… electricity.

Something I never gave a second thought to has become part of my safety and independence.

That’s a strange realization.

But it has also taught me something important.

I can’t control everything that happens.

I can’t control the weather.
I can’t control when the power goes out.
And I certainly can’t control what ALS decides to throw at me next.

But I can prepare.

I can ask questions.
I can make a plan.
I can have backup options.
And I can laugh when the situation gets ridiculous.

Because sometimes laughter is the only reasonable response when life decides to throw another curveball.

Better Prepared, Not Perfectly Prepared

I don’t think we’ll ever be completely prepared for everything.

Life doesn’t work that way.

There will always be something we didn’t think about. Something we forgot. Something that pops up and makes us say,

“Well… I didn’t see THAT coming!”

But maybe being prepared isn’t about having all the answers.

Maybe it’s about being willing to learn from the things that catch us off guard.

Every challenge teaches us something.
Every “what if?” gives us an opportunity to make the next time a little easier.

Those several days without power taught me something I probably wouldn’t have understood before ALS.

When the lights go out, I don’t just lose electricity.

I can lose mobility, comfort, safety, and some of my independence.

So now I’m thinking differently about being prepared.

Because with ALS, being prepared isn’t about expecting the worst.

It’s about protecting as much independence and comfort as possible for as long as possible.

And if that includes keeping the coffee pot running…

Well, that’s just good planning. 😉

Until next time…

Keep dancing with life, one moment at a time!

💕 Stacy

July 2026