Oops, I Forgot I Have ALS!

dancingwithalsandlife.blogspot.com

AI ART, “Every Rung Matters”

These are a few things that happened while I was still able to walk and had some mobility in my arms and hands.

I will sarcastically say that the “fun” part of having ALS is never knowing what to expect. Every day I wake up, I may have lost the ability to do something I was just able to do yesterday. Or, I can go for long periods of time without any changes in my functional status.

Then when I start to come to terms with the loss of a particular function and give myself a little pep talk: “Stacy, you got this, girl.” Something else happens. I joke that having ALS sometimes feels like I’m being robbed  because in a blink of an eye I feel like something else is being stolen away from me.

This becomes a bit of a dilemma because I’m constantly needing to readjust my thoughts and actions. My tendency has always been to be helpful when others are in need of assistance. However, I now need to constantly remind myself of the realities of my disabilities.

With that being said, I will acknowledge that most of the time when I get myself into some sort of pickle, it’s because I’m overconfident in my abilities—or I simply don’t think things through.

There are so many things you should never do when you have ALS or a disability. Here are a few situations I encountered that I probably should have thought through before jumping in to help.

The Ladder Incident

One time, I had a gentleman come over to measure for replacement windows for our house. One of the windows was located on the second story, and he didn’t have a ladder tall enough to reach it.

I mentioned that we had a ladder in the garage, so he went and got it.

We hadn’t used this ladder in a while, so I had forgotten that it wasn’t exactly sturdy. I only started remembering that little detail while he was climbing upward and the ladder began to wobble.

While he was climbing, I asked him if he would like me to hold and stabilize the ladder for him.

Of course, he said yes.

It was at that exact moment that I thought, “Now this is stupid of me.”

He had no idea that I had weakness in both of my arms. Holding that ladder was like trying to be a superhero—except I had lost my superhero powers.

The entire time he was climbing, I was praying:

“Dear God, I acknowledge that this was a stupid move on my part. Please, please don’t let him fall, because if he does, we are both screwed.”

Thankfully, my prayers were answered.

He didn’t fall, and the ladder went into the trash the very next day!

Trapped in the Bathroom

During another outdoor renovation project, I was downstairs in our finished basement and needed to use the bathroom.

I went in and, completely out of habit, closed the door.

I didn’t think much about it until I went to open it—and it was stuck against the door frame.

I thought, “Oh, shit! This is not good.”

I knew I wasn’t going to have enough strength to push the door back open.

I was home alone at the time, and, once again, stupid me didn’t have my cell phone in my pocket.

So there I was—trapped inside the bathroom for several hours.

For the first hour, I was determined to get the hell out of there. I kept pushing and pushing as hard as I could.

By the second hour, frustration kicked in.

I started to cry and thought, “I guess this is it. I’m going to have to live in the bathroom until my spouse gets home from work.”

And that wasn’t going to be for several more hours.

Eventually, I took a break and calmed myself down. Because I don’t like to give up or feel defeated too easily, I decided to try again.

This time, I pushed my entire body toward the door.

When the door finally flew open, I almost did a graceful face-plant onto the floor.

After that particular adventure, I made a mental note:

Always have my cell phone—or some form of communication—on me at all times.

Lesson learned.

When Being Helpful Becomes a Disaster

Then there are the times I convince myself that I can still be helpful to my spouse by taking the dishes to the sink after a meal.

My helpfulness often turns into an epic failure because I wind up dropping the plate or can’t keep it level. While I’m walking, the remaining food falls onto the floor.

Or I think, “It looks so simple to grab the ingredients or condiments out of the refrigerator.”

Those wind up on the floor, too.

It becomes more of a problem because now I’ve just created an additional mess for my spouse to clean up.

I know this drives him crazy sometimes.

Slowly, I’ve learned to curb my desire to be helpful because my version of helpfulness can sometimes turn into a disaster.

I must tell you, though, my deficits do not frustrate our Australian Shepherds.

They now follow me around, waiting for the next morsel to hit the floor. They have officially become part of the Clauss Cleanup Crew.

Sometimes I start to laugh because it takes me back to the days when we had toddlers in the house—dropping Goldfish crackers and Cheerios all over the floor.

The only difference now is…

I feel like the toddler.

And, apparently, our dogs are just fine with that arrangement.

Until next time…
Keep dancing through life, one day at a time.

— Stacy

April 2025

Rev. August 2026