ALS and My Hardly Mobile Phone

Would it surprise you to learn that I check my cell phone zero times a day?

All around me, people are texting, emailing, chatting, and checking social media. Me? Nada. My eyes are forward, watching the world. I’m embracing “the joy of missing out” — a state of mind caused by my ALS.

The value of emojis

When I was diagnosed with ALS in 2010, smartphones were a unique technology. As my symptoms progressed (including stiff, tight muscles), smartphone owners honed their texting and swiping skills. To me, their thumbs and fingers were tapping as fast as a line of Radio City Rockettes!

When friends or a family member sends me a text, I’m so slow with my one-finger typing that before I can finish my reply, they have sent two more comments and are on to a whole new topic! I have learned the value of short words and adding lots of emojis.

Dagmar’s tip: Just like when I’m speaking to someone new and I let them know early in the conversation that I talk slowly - - when texting a new acquaintance, I’ll type “have patience, I type slow.”

My version of mobile

Although a cellphone is referred to as a mobile device, I can’t get mine to be as mobile as everyone else’s. Others carry their phone in one hand while shopping, ordering, or being out and about.

Mine sits on my rollator. I follow the same rules as for driving a car: “Two hands on the wheel, ma’am.” Both of my hands firmly grip my rollator’s handlebars. When a call comes in, the sequence is: full stop, lock handles, pick up the phone, and then talk. Reply to a text? Add sit down to the previous sequence.

Dagmar’s tip: I often answer and right away hit the “speaker” button. This way I can talk without having to fumble the phone bringing it up to my ear.

Who needs apps?

My little phone has so few apps it qualifies as a dumb phone. Texting, calling, and a camera are the only functions I need and use.

But I haven’t nailed down how to take a selfie. It’s that ALS-thumb-finger-coordination problem. Whenever I line up the perfect shot, my shaky hands delay hitting the button to produce interesting effects.

“Oh, look! A photo of the ceiling. Oops, that’s a foot. And I think that’s a random, uh, blurry thing.” 

I’ve often, asked someone else to snap the photo.

Dagmar’s tip: I use the camera’s count-down timer, setting it to 10 seconds. This way, I have enough time (and a warning) before the “click” to steady my hands and/or keep the object in view.

What can we do?

It’s no secret that most people are addicted to their smartphones. Fear of missing out (FOMO) drives most of the checking and rechecking. Too much screen time can have negative effects on our mood and our social interactions. A few years ago, I took a month away from Facebook and felt great afterward. Plus, I still had my friends when I returned.

You could say that my current relationship with my cellphone has health benefits. Just like those in the digital minimalism movement, I’m reducing my attachment to unneeded apps and my FOMO.

So, what do I do while everyone around me is staring at their phone?

·        When riding in the car, I look out the windows and watch the scenery.

·        When at a restaurant, I notice the décor.

·        When outside, I enjoy nature.

·        I practice an eyes-open mini-meditation and focus on my breathing.

·        I knit.

·        I embrace the joy of missing out - - because it’s a form of self-care.

And I know that no matter the challenge, I can live well while living with ALS.

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Dagmar Munn
ALS and Wellness Blog

JOMO (Joy of Missing Out)

"Feeling content with staying in and disconnecting as a form of self-care"

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