Coaching my inner critic to help me live well with ALS

The other day, right in the middle of doing my daily chair exercises, I had to stop and turn down the volume of my mind’s inner critic. Because I was feeling a little sluggish and off balance, the voice in my head was absolutely convinced that my ALS symptoms were getting worse. Being aware of the signs that my inner critic is taking over, I stop what I’m doing and think about the “why.”

In this particular situation, I reminded myself I was getting over a slight cold and my energy would improve in a few days. Then I took a slow, deep breath and began exercising again.

How did I get to know my inner critic so well? It began with gymnastics.

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My gymnastics journey

All through my school years, gymnastics was my sport of choice. I did everything from daily after-school practice sessions to spending summers at gymnastics camp, and I even taught and coached during my college years. I loved the strength and grace and how it helped build confidence. But we would also joke that anytime you feel you’re perfect, just ask a judge for a reality check.

Oh, those judges, with their eagle-eyed ability to catch every wobble, slip-up, or missing toe point.

Eventually, I tried my hand at judging, too. Armed with the rulebook of penalties and deductions for various gymnastic skills, I briefly transformed into someone who no longer saw the beauty of each move, but only the mistakes and imperfections. I even began to judge my life! Today’s outfit? 7.0. Last night’s dinner? 10.0. Last night’s date? 5.5.  

Soon, I left gymnastics for a career in health and wellness. But the voice of my inner judge remained and emerged in full force when, in 2010, I was diagnosed with ALS — especially once I learned about the ALS rating scale.

A new rulebook

The ALS Functional Rating Scale-Revised, or ALSFRS-R, is a score sheet regularly used in ALS clinics to track a patient’s symptom progression. Patients begin with a score of 48, and points are deducted for the inability to perform specific skills.

My inner judge, now critic, was off to the races. I’d wake up in the morning and wonder how well my body would be performing that day. Then I’d lie awake at night rehashing all the things that went wrong. Mentally I’d critique my less-than-perfect walking, my fumbling fingers, and my failed attempts to pronounce words. I’d keep meticulous track of my ALSFRS-R score, wondering, “I’m at 38 points. If I drop to 37, is that bad?”

Although it’s always a good habit to be aware of our body’s ability to move, speak, and swallow, living in a state of high alert and worry doesn’t help anyone.

If you feel your inner critic is dominating your thoughts, try a few of my strategies to bring out your inner coach instead:

• Seize the day, focus your mind on interesting projects, and connect with others.
• Stop comparing yourself with how you were in the past. Instead, focus on living each day by being the best self you can be on that particular day.
• Learn how to give yourself constructive, gentle self-criticism that follows the formula compliment-correction-compliment.
• End each day by creating a gratitude list focused on the people, places, and things you’re thankful for.

I’ll be the first to admit that my inner critic is hard to control, but control it, I do. And I believe that you can, too. It’s one more way we can learn to live well while living with ALS.

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, and are intended to spark discussion about issues pertaining to ALS.