How ALS Is Teaching Me to Start Over — Again and Again

I’ve been living with ALS for 12 years now, and it’s certainly taught me many lessons. They’ve involved having patience and perseverance, as well as getting back up over and over.

The most important lesson, however, has been to let the present moment be what it is, instead of what I think it should be.

Two lessons

My first ALS lesson happened in the summer of 2010. I was feeling great. I swam every morning, took long walks, and my personal yoga practice grew to a routine of advanced poses. This, I told myself, is how my life should be — forever.

Then I began tripping and falling, and soon was diagnosed with ALS. It was darn hard to accept my new normal of needing to use a rollator to walk and having to do my yoga while seated in a chair. But I didn’t give up. I reminded myself I’d taught yoga to lots of people with physical challenges. Now, starting over, I was in my own special class of one. I focused on embracing the present moment.

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A second lesson happened a few years later when I became more accustomed to life with ALS. I found myself accepting invitations from ALS support groups across the country to Zoom into their meetings as a guest speaker on the topic of stress. I loved public speaking, and wellness and stress management were my areas of training. This, I thought, would certainly be my future career in the ALS community.

Unfortunately, I developed the ALS symptom of dysarthria; I had a slow, gravelly voice and was slurring words. My life wasn’t what I thought it should be.

Again, I drew on what I taught others, and while pursuing ways to keep what little voice I had, I reframed the situation. If I couldn’t use my voice to speak to other ALS patients, why not “speak” to them through writing? That led to my personal blog and the opportunity to write this column for the past five years.

Fast-forward to 2022

Because I have an ALS clinic in September and I like to use those visits like an Olympic challenge, I created a few goals for myself. I planned to use the summer months to increase my leg strength, improve my walking, and be able to score a whopping 98% on the breathing test.

All was going well until I came down with COVID-19. I thought it would last only a few days, but it actually knocked me back for two weeks, plus two more weeks of coughing and feeling weak and fatigued. All my ALS symptoms were amplified as I felt my summer fitness gains slipping away.

I had to start all over again

Give up? Never — though I did give up on what I thought my fitness should be. Thinking that way would only make me angry and helpless, and that wasn’t good.

Instead, I focused on what I could do, even if it was only two chair squats. I did two in the morning, two in the afternoon, and two more before dinner. Within a week I could do three. Two weeks later, I was back to doing 10 at a time. ALS clinic, here I come!

Has ALS forced you to adjust your perception of what should be? Use my examples to help you cope and accept your new situation. Because I believe we can 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.