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.
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Comments
Diana Belland
Dagmar,
What a brilliant commentary! You've exactly described the feelings so many of us pALS must have. I know that I am particularly susceptible to absorbing negative words and images. I've certainly had those moments of "why bother?" when I notice symptoms of progression. And I also have a bad habit of comparing myself negatively to other pALS.
But building a shield of mental resilience makes such good sense. Mental resilience can help us focus on living as fully as possible in the present moment, and can enable us to have more satisfying and loving relationships with family and friends. And, as you've pointed out in several columns, there is some evidence that a strong, positive attitude may slow progression.
I've had some of those "why bother" moments the past few days as I recover from a recent two week trip, so your column was exactly what I needed to read today---thank you so much for your wise words!
Cate
I follow some pALS on social media who are very involved in ALS activism. I'm also on some lists that are constantly asking me for money. I feel like I'm not doing enough for 'the cause' sometimes. Worse, I feel like I'm not doing enough to fight the disease. I try to remember to conserve my energy, put my efforts into things that are important to me (like working, spending time with family, doing things I enjoy and that are healthy for me). I often go back to your columns, Dagmar! They're so encouraging and help me focus. Thanks!
Paul Tavano
Thank you Dagmar for articulating how I feel as a fellow PAL with 10+ years with ALS. Early on it was terribly difficult to see what the future had in store for a person with ALS. As time has gone on and my progression being slow I have unconsciously built up my mental resilience. I don’t shy away from the future but I prefer to live in the present. I can’t control how my body will adjust to how ALS progresses but I can control my attitude and my outlook on life.
deke
beautiful philosophy and message!
Thank you.
Eileen
Dagmar - your honestly, vulnerability and resilience continue to inspire me. AND your followers too - such wonderful people! Eileen
Susan Gray
Dagmar, I am so thankful that I stumbled onto your blog and articles back when I was diagnosed in November. I have learned so much from you about staying active, positive and living life. Little things like being thankful for rollators, AFOs, or any adaptations that help me maintain my independence, I owe to you. It would be so easy to dwell on the things I have trouble doing rather than looking at those things as ways to "keep on doing."
I don't remember how I found you and your blogs/forums etc. I just thank you for being there when I was looking.