How I Live With Gravity, Coincidence, and ALS

I’ll admit that during my high school days, when our studies turned toward physics, I didn’t pay much attention. Gravity, the invisible force that keeps us on the ground and makes things fall, seemed so bo-ring. But in 2010, when I was diagnosed with ALS, the condition put me through an intense refresher course in exactly that: gravity.

What happened?

Walking up a hill suddenly felt like I was mountain climbing, and my coffee mug felt as heavy as a barbell. Gravity pulled on my balance as well. A simple trek across the living room morphed into me grabbing nearby furniture and lurching as if I were on a ship in high seas.

Naturally, I blamed everything and everyone else. I mean, who cranked up earth’s gravity anyway, and why me?

Added to my worries, I read that my form of the disease, sporadic ALS, usually develops in patients who are in their 50s and 60s, right about the same time as the signs of aging appear. These are signs like having less energy, feeling weak, and having balance issues.

At 59, I second-guessed every muscle twitch and fumbling stumble. “Maybe it’s not ALS. Or is it?” I wondered.

Like many who live with ALS, I became a worrying, hyper-vigilant patient, constantly researching symptoms on the internet. Everything became either a cause or effect of ALS.

When my pencil rolled off the table, the pages of a catalog wouldn’t separate, or a Post-it note stuck to my fingers, what did I do? Yup, I blamed stupid ALS for making things go wrong.

But it’s just plain old gravity, with a few doses of coincidence — events that have no connection to each other.

What did I do?

I knew I had to bring my thoughts back into balance. Worry is helpful only if it leads to change, not if it turns into obsessive thoughts.

As I wrote in the column titled “The ALS Game Board of Life,” we can’t control life’s changes, but we can make the best of our changed circumstances and adopt a new perspective. Here’s how I do it:

• When I’m stressed and ready to lay blame on someone or something, I stop and ask myself if this event was just a coincidence or truly related to ALS.
• If I’m stuck in a “what-if” moment, I try to figure out the next step and find a solution. That may be thinking through contingency plans or asking for help from caregivers or family.

Coincidences are inevitable, and we certainly live with gravity. Try my strategies to help dissolve your worries and live well while living with ALS.

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