ALS and Wellness Blog: Having all the facts helps me live with ALS

Oh, those crazy, runaway thoughts.

When I was young, I used to have them all the time. That’s because I didn’t know the whole story about certain things, so my mind would invent the answers. While growing up, I learned the value of having all the facts, and my crazy imaginings were tamed. But the day I was told I had ALS, the thoughts came back, and my mental restoration had to begin again.

Let me share one of my early memories of out-of-control thinking.

The summer I was 12, I attended a gymnastics camp in Michigan. We’d spend our days outdoors, cartwheeling and flipping on apparatuses scattered under the tall pine trees that grew in that region. Every afternoon, we had an hour of free time, and most of us used it to swim in the cool waters of the nearby Elk Lake.

A simple adventure

One afternoon, my new camp friend Melanie and I decided to hop on one of the camp’s paddleboards close to the swim area. They were long, made of wood, shaped like a surfboard, and painted bright orange. Since we were both small, we agreed to ride tandem and take turns paddling. Melanie went first, then I’d paddle us back to shore.

With our legs dangling in the water, we straddled the board and set off. A few minutes later, Melanie shouted, “Let’s go over there!”

I looked where she was pointing and saw, just offshore, a cluster of fellow campers floating on paddleboards just like ours. They all sat bent over, intently studying something in the water. I knew exactly what they were looking at and wanted no part of it.

That’s because, at one of the recent evening campfires, an animated counselor mesmerized us with a story about how many years ago, a boat with fishermen had been caught in a storm and sunk just offshore. He gestured toward the lake and said, “The men on the boat were never found,” then added, in a sinister voice, “And who knows what creatures now lurk in the dark waters below.”

At the time, we all squealed with delight. Later that night I lay awake worrying about creepy, crawly creatures hiding in the water so close to our camp. Now I was on a paddleboard headed straight to their lair.

The adventure turns dark

As we got closer, my thoughts went wild with images of slithery, slimy movie monsters. Instinctively, I pulled my legs up out of the water, sat in a tight tuck, and squeezed my eyes shut. The words “Don’t look down, don’t look down” raced through my mind.

By the time we joined the gathering, I heard a calm voice coming from the middle of the group. It was one of the other counselors explaining that our camp had originally been a fishing lodge. In hopes of attracting more fish for the lodgers, the owners had a wooden barge sunk in the spot right where we were floating.

Squinting, I peered into the water. About 10 feet below us, I saw a flat square made up of wooden planks, all covered in mucky, brown algae. No creepy creatures anywhere, just small fish darting about. My body slowly relaxed. Soon I was chattering and joking with the others.

I didn’t realize it then, but knowing the facts is an important life rule to follow. And one I did follow, until many years later.

Sleepless nights

Even though I hadn’t had them for years, my runaway thoughts came roaring back when I was diagnosed with ALS. Like most newly diagnosed patients, I lay awake night after night imagining the worst-case scenarios of my future life with ALS.

Only through a daily search for valid explanations of what ALS is, and how best to treat and live with it, was I able to conquer my anxieties and move forward with my life.

With ALS, there are lots of reasons to jump to conclusions. I’ve learned that muscle weakness might be an impostor symptom and actually exists because of disuse atrophy; my own fault. Other times, I need to factor in recovery time following several days of high activity rather than expecting my body to effortlessly bounce back. Finally, it's important to know what ALS is, and not listen to hearsay or dire posts on social media.

We’re on our own journey with ALS. Watch out for those runaway thoughts and always rely on the facts. Because they will help us live well while living with ALS.

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How I Fine-tune the Voices in My Head, So I Can Live with ALS

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