ALS Awareness: Minding Me While Minding the Message

Spring — the kickoff for a multitude of ALS awareness events — is just around the corner! Many are already gearing up, and this is my signal to dial up my mental resilience. It helps me support their messages while keeping a firm hold on my sense of me.

Why do events require resilience?

I look forward to ALS awareness events with their banners, balloons, emails, and videos. Every year, the promoters improve their game and their slogans attract new donations and create an explosion of participation.

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

Over the 10 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?”

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 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 my past columns. “Reframing Our Approach with a New Kind of ALS Diagnosis” helps me embrace a new definition of ALS. “A New Paradigm for the Future of ALS” reaffirms my belief that ALS patients can live long lives and some will even recover. Finally, “5 Things That Keep Me Motivated” reminds me how a daily mantra and gratitude list will improve my well-being.

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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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.