I’m still showing up for each day, even though I have ALS

A number of years ago, during my first year of learning to live with ALS, I promised myself that I’d show up every single day. At that time, my notion of showing up meant my goal was simply to get up, get dressed, and go sit in the other room! In other words, I’d show up to the day, and my life.

For many ALS patients like me, receiving a diagnosis of ALS is such a defining moment that we can only consider the easiest goals. But who knew that the simple goal of moving from one room to the other would morph into my overall life philosophy now, 13 years later? Let me share a recent example.

A feel-good moment

The other day, I returned home from getting my monthly haircut and reflected on how good I felt. Of course, having a fresh haircut always feels good. However, this time I was also feeling pride in my self-confidence and physical ability along with the afterglow of positive social interactions.

I’d worn an outfit that made me feel good and lifted my mood. I’d walked into the hair salon wearing my ankle-foot orthoses while pushing a rollator, yet I didn’t feel out of place at all. I could say my hellos and have short conversations without feeling embarrassed by my slow, low, ALS-affected voice.

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How I use showing up

What does my daily habit of showing up have to do with all that?

• I show up for the day. Even when I’m spending the day at home, I get up and put on a nice outfit, even a little makeup and lipstick.
• I show up for my exercise. I do several short bouts of exercises scattered throughout the day. Many of the movements focus on maintaining and improving my breathing, posture, and leg strength for walking.
• I show up for social interactions. Whether it’s doing my many online projects, going to medical appointments, or simply being a go-along as my husband runs errands, I show up.

Looking back, I credit my current accomplishments to taking small, positive actions day after day, staying consistent, and being willing to start my life over again.

But it’s not easy to do, as many ALS patients know so well. Many of us feel the hopelessness of having to start over with a body that doesn’t work so well anymore. Or we feel useless that we can’t pursue our chosen profession any longer. Oh, boy, did I used to feel that way. But getting up and going tricked my mind into feeling better while it improved my attitude and influenced how my body felt.

That’s why just one small change, one small step of daily progress, can become a habit. String those good habits together to help nudge yourself forward.

Give showing up a try. It’s one more strategy that’ll help us learn how to live well 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.