ALS Awareness: Minding Me While Minding the Message

It’s May — the kickoff for a multitude of ALS awareness events— and it's also my signal to dial-up my mental resilience. It helps me support all the awareness messages while at the same time, keeping a firm hold on my sense of me.

Why do events require resilience?

I look forward to learning about the different ALS awareness events that are happening across the nation. Every year the promoters improve their game; their banners, balloons, emails, videos, and slogans attract new donations and create an explosion of participation.

But I believe what we patients read, say, and tell ourselves also matters. It can shape our beliefs and affect our attitudes, expectations, and mind-body synergy.

Over the 14 years that I’ve been living with ALS, I have noticed my own sensitivity to the barrage of statistics, sad patient stories, and unfulfilled promises from researchers. I’d feel the creeping weight of hopelessness. I even had a few moments when I thought, “Why bother?”

For example, an attention-grabbing ALS awareness email might begin with What if you couldn’t move? What if you couldn’t walk, speak, or hug the ones you love? That’s living with neuromuscular disease.

That email might prompt a donation from the general public. But to an ALS patient like me, it describes a scary future I’m doing everything I can not to let happen!

That’s why I protect myself from absorbing the words and images by building a shield of mental resilience.

Here’s how

To keep things in check, I review three of these past columns and blog posts:

• “Reframing Our Approach with a New Kind of ALS Diagnosis,” is on the ALS News Today site. In it, I share how I put a “positive spin” on my diagnosis.
• “A New Paradigm for the Future of ALS,” also on the ALS News Today site, reaffirms my belief that ALS patients can live long lives and some will even recover.
• Finally, my blog post “5 Things That Keep Me Motivated,” reminds me how a daily mantra and gratitude list will improve my well-being.

    And if you catch yourself absorbing too many messages and feeling down, this blog post, “Words Also Matter,” might be the perfect remedy to help you reset your mind, body, and spirit.

Going forward

Let’s fill the balloons and hang the streamers! Show up to events, join advocacy groups, start a Facebook page, and reach out to other ALS patients.

Let’s raise ALS awareness.

Even though everyone has a different journey with ALS, I believe what matters is our perception and awareness of ourselves. If you begin to feel the weight of the awareness messages, try my method and dial up your own mental resilience.

You are a person living with ALS.

You are you.              

I believe those are the most important words!

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Dagmar Munn
ALS and Wellness Blogger

Sometimes carrying on, 

just carrying on, 

is the superhuman achievement. 

Albert Camus

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