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

 

I’ll admit to hearing voices — the voices in my head, that is.

We’re all listening to our mental voices. 

It’s the constant chatter of inner dialogue or self-talk that leapfrogs through our thoughts, beliefs, questions, and ideas. Mostly the chatter is background noise, accompanying our daily activities and conversations.

My own self-talk rose to a loud roar in the days and months following my diagnosis of ALS. I’d ask myself over and over what I did to cause this disease. I got caught up in never-ending thought loops and imagining worst-case scenarios for my future. Fortunately, my early training in mindfulness soon kicked in.

When I taught wellness during my professional days, the lessons focused on learning how to counter distractions and keep thoughts in the present moment. Little did I know how important these skills would be to me now that I live with ALS.

How mindfulness helps me

At first, I used mindfulness to help me cope with my ALS symptoms. For example, paying attention to my actions helped me avoid falling, choking on food, or spilling drinks. But just as important, being mindful also includes managing one’s self-talk to change the inner dialogue from negative to positive, and even to turn the volume way down low.

Recently, studies have been published showing the benefits of mindfulness for ALS patients, including reducing anxiety and depression and improving quality of life. These all validate my experiences from practicing mindfulness in the 14 years I’ve been living with ALS.

What does “turning down the volume” on your self-talk feel like?

Take in a slow breath and slowly exhale. Wiggle your toes and listen to the sounds around you. 

Poof! You are in the present moment. That’s how easy it is.

... try it one more time and soon you'll be a pro!

The ALS battle

Negative self-talk can be internalized and it creates body-mind stress. Adrenaline and cortisol released during the stress response can suppress the body’s immune system and lead to increased inflammation. Additionally, heart rate, blood pressure, and muscle tension are negatively affected by mental stress.

What continues to surprise me is that so many in the ALS community refer to the disease using terms of waging war in statements such as:

“I’m in a constant battle waking up wondering what the day will bring.”

“We admire our patients’ courage in their battle to fight ALS.”

Truth is, I’m not in a battle with anything. I’m not fighting an enemy or waging war against a tide of invaders. I don’t wake up every morning thinking, “OK, feet, put up your dukes, ’cause if you don’t start walking right, we’re gonna have a real battle this time!”

I know my feet and legs aren’t at fault. More importantly, I’m not at fault. This condition of ALS is happening on a deeper, cellular level. It’s a part of me.

Instead, I wake up every morning wondering how I can bring more well-being into my day. I use the words compassion, kindness, calm, and healing.

Not all self-talk is bad

Another way I refocus my self-talk is when I’m in bed and the lights are off. Instead of lying awake in the dark, stuck in a negative thought loop, I fall asleep remembering the day’s events and people with thoughts of gratitude. Knowing this is my habit of falling asleep forces me to actively take note of the good things as they happen throughout my day. 

Studies show that doing this helps us have positive thoughts when drifting off to sleep, and we can even sleep better.

Paying attention to the present moment, sidestepping self-criticism, and practicing gratitude are all positive ways I use self-talk to help me live with this challenging disease. Why not try it for yourself? 

Together, we can learn to live well while we live with ALS.

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FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS

How to use mindfulness for better living with ALS

How to Apply Optimism while Living with ALS (ALS Stress Management Tips)

Dagmar Munn
ALS and Wellness Blog

 


"Talk to yourself like you would to someone you love.”

Brene’ Brown




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