Learning How to Pivot When Living With ALS

As the pandemic rolled through in 2020, I began noticing how people, businesses, and organizations pivoted to survive the challenging times.

Folks learned to use Zoom, dine-in restaurants expanded their takeout business, and ALS fundraisers switched to holding online events. I loved watching all the successful pivoting. It gave me hope.

And now, as we continue to live with our new normal, pivoting continues. All those pivots even gave rise to completely new enterprises and services.

Pivoting, to me, is the ability to embrace change and still find purpose

I’ve seen it in many ALS patients. You know the ones — they accept their diagnosis and “move on” with their lives. They find a way to continue participating in life and remain noticeably positive, optimistic, and hopeful.

During my first year with ALS, when reading their online stories, I thought reaching their state of satisfaction was nearly impossible. Intrigued, I began to study their steps toward resilience, and the pieces finally fell into place for me.

One mistake I made was expecting too much, too soon.

Learning to take time

Discovering I had ALS was confusing, shocking, and scary. Plus, I wanted to dive right in and read everything about ALS. I found that accepting my diagnosis took time, as did telling my family and friends. They needed time to understand and learn how to best support me.

Then, I had to figure out how my symptoms changed the way I navigated my world. That meant learning to walk with a rollator, using AFOs, and thickening my beverages to make swallowing easier. My husband took over the cooking duties and I gave up driving. I had to adapt to my new normal of s-l-o-w.

After several months, I finally reached the point of asking myself, “Now what do I do?” All I could think of were the activities I couldn’t do anymore.

Looking back, one of the best things I did was deciding to show up. Although I didn’t initially feel like attending meetings, I showed up. If friends invited me to lunch, I showed up. Getting out and about prevented me from retreating into isolation.

At this point, I felt myself pivot

Rather than being overwhelmed with what I could no longer do, I considered what I could accomplish. I thought about the groups and clubs I belonged to, what they needed help with, and considering my limitations, how I could still be of value.

As I wrote in my column "New Projects Help Me to Find Purpose," each of us has our definition of what gives us meaning or purpose. It should be something that makes us look forward to each day and gives us a sense of satisfaction and gratitude when we reach a milestone or complete a project.

I realized that the “successful” ALS patients whom I had been admiring had simply allowed themselves enough time to transition through the process of change. Additionally, their transformation was made easier by building a good support network, challenging their loss by changing their perspective, and embracing available technology and adaptive aids.

Going forward

Two phrases kept me on track and I want to share them with you.

The first is a question I asked myself: “If a pivot is inevitable, wouldn’t I rather do it on my own terms?”

The second phrase became my ongoing motto: “That was then, this is now.”

Both motivate me to keep on pivoting, no matter what ALS throws my way. And I believe you can too.

Together we can learn to live well while living with ALS.

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Dagmar Munn   
ALS and Wellness Blogger

“When we are no longer able to change the situation, we are challenged to change ourselves.” Victor Frankl

 ...and 

"Pivoting isn’t Plan B: It’s part of the process"

Jeff Goins

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