Learning to Pivot When Living With ALS

All around me, I’ve been noticing how people, businesses, and organizations are pivoting to survive these challenging times.

We’re getting confident using Zoom, dine-in restaurants have expanded their takeout business, and ALS fundraisers are holding online events. I love seeing all this successful pivoting. It gives me hope.

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 that 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 navigate my world. That meant walking with a rollator, using AFOs, and thickening my beverages to make swallowing easier. My husband took over cooking duties, and I gave up driving and 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 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 admired 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 technology and adaptive aids.

Going forward

Two phrases keep me on track. The first is: If a pivot is inevitable, wouldn’t you rather do it on your own terms? The second is: That was then, this is now.

Both motivate me to keep on pivoting, no matter what ALS throws my way. Because I’m determined to live well while living with ALS.

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