How a long walk taught me a valuable lesson about ALS pride

 “What was I thinking?” The words boomeranged around my mind as I stood frozen in place under the hot Arizona sun. I was experiencing an ALS patient’s worst nightmare: being stuck with an expanse of sidewalk ahead of me, the same distance behind me - and absolutely zero energy in my legs to move in either direction.

I was feeling angry at both my ALS and myself. Why was I in this predicament?

As it turns out, it was my fault. And here’s why I decided to never let something like that happen again.

I ran out of oomph

The incident happened while I was on my way to have routine lab work done prior to my appointment at the ALS clinic, which was the following week. This time, however, I decided to try a different lab from the one I’ve been using for several years. The previous lab had moved to a new location that had a slight hill from the parking lot to the building’s front door. Once inside, I had to navigate a narrow hall without an automatic door and then crowded seating in the waiting room. Of course, these are all negative marks for someone like me who wears ankle-foot orthoses (AFOs) and pushes a rollator.

When I searched for the new lab on Google Maps, I was pleased to discover that it had a level sidewalk stretching from the parking lot to the building, and a door leading directly to the lab.

Unfortunately, I misjudged the length of the sidewalk.

Before leaving the house, my husband suggested that I nix wearing my AFOs and instead ride my mobility scooter. I surprised him with a firm reply: “No, I’ll be just fine!” My mind envisioned the many chair squats and other leg exercises I dutifully perform every day, intertwined with a dreamy scenario of me walking into the lab with grace and ease. “AFOs and rollator it is,” I assured him.

Later, in the parking lot, I pushed my rollator up a small ramp and onto the sidewalk. By the time I reached the halfway point, my leg muscles had stiffened, forcing every step to be shorter and shorter. My shoulders ached, and my hands were in a death grip on the rollator’s handles.

Patiently walking alongside, my husband finally blurted out, “Why don’t you just sit on the rollator and let me push you the rest of the way?”

“No, I can do this,” I shot back, grimacing between heavy breaths.

Meanwhile, conversations swirled in my mind: “I’ve done the exercises. I should be stronger than this by now. Why is this happening to me?”

Eventually, one baby step at a time, I made it to the lab’s front door. Once inside, I flopped onto one of the empty chairs. While waiting for my name to be called, I thought long and hard about what had just happened.

My insights

What was I thinking? I wasn’t thinking at all. My pride had taken over, and I fell victim to the old belief that this isn’t the way things are supposed to be.

So, I banished feeling self-conscious about using a scooter, knowing that it doesn’t define me, but rather helps me move from points A to B. I also reminded myself to accept that I have ALS. All of my healthy lifestyle habits won’t transform me into a superwoman. They can be beneficial, but I’m still Dagmar, who’s living with her ALS.

Here’s the thing: Living well with ALS means we have to be mindful, know our physical limits, stay safe, and always be willing to accept help. My overconfidence is what got me in trouble.

What happened when I left the lab? Once we stepped out the door, I accepted my husband’s offer. I sat on the rollator while he gallantly pushed me all the way to our van. I decided right then and there that next time, I’d be scootering in.

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A final note: We’ve all seen rollators repurposed into makeshift wheelchairs. Maybe it’s OK to do so in an emergency, but remember, it’s an unsafe long-term solution.(Read: Do You Workaround?)

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Dagmar Munn
ALS and Wellness Blog

“Ego and pride are like a bad haircut; Everyone notices, but you.” Unknown

 

 A version of this post first appeared as my column on the ALS News Today website.