Why I named my column ‘Living Well with ALS’

I named my column “Living Well with ALS” for many reasons. The most important one was that each word in the title had a deep meaning for me.

Six years ago, when Bionews, the parent company of this website, invited me to write a patient column for ALS News Today, my mind went through a roller coaster of emotions. I was flattered to be picked, excited to share my message, and worried I’d soon run out of topics to write about. Fast forward to today, and over 300 columns later, I’m still writing and have more words to share. But I still believe the most powerful words for my readers are in the title of this column.

Before I was diagnosed with ALS in 2010, my life was humming along just fine. I participated in gymnastics during my early years, received a master’s degree in dance, and spent 30 years teaching community wellness and mind-body health classes through our hospital’s outreach program. I thought I’d be fit and moving with ease for the rest of my life.

Being told I had ALS was shocking. But I couldn’t deny my symptoms of weak legs and feet, and an overall feeling of stiffness. I decided to follow the same wellness principles I’d taught years earlier and cobbled together a daily routine and life philosophy that helped me feel healthy despite having ALS. I began writing about experiences in my ALS and Wellness Blog, which in turn led to an editor from Bionews contacting me.

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Living

I felt it was important to take a positive stance within the ALS community, to counter the prevailing attitudes I observed the year I was diagnosed. It seemed that everything I read implied that if a person has ALS, then they must be depressed and have a low quality of life, and death will come quickly. Patients often left their doctor’s office imagining end-of-the-world, worst-case scenarios of their disease, and most of the patient memoirs and blogs chronicled the downward spiral of their life. I felt a strong need to tell the other side, to give ALS patients permission to feel OK, to acknowledge their disease while recognizing the good days, too.

Additionally, I believe what we tell ourselves about ourselves matters. The same goes for what we read. So, for me, the word “living” also denotes a positive image. I like knowing that my readers receive positive, helpful information from me while the word “living” is being imprinted in their psyche.

Well

I don’t use the word “well” to denote being well-off financially or socially. It has nothing to do with status. Instead, it’s a shortened version of, well, wellness.

Even though current trends in our body-conscious society encourage us to connect optimal health with diet, exercise, and looking young, my previous wellness models taught that high-level wellness or optimal living can be achieved even by those considered “unwell” — especially when judged on their age or life condition.

Being well is achieving quality of life. We can have optimal wellness even though we’re sitting in a wheelchair, or pushing a rollator, or have a genetic condition, or have ALS.

With

The word “with” represents coexistence. ALS does not dominate my life or consume my thoughts. I don’t see it as an outside enemy attacking my body. It is my body producing a condition that I have to learn to live with. Therefore, I live with ALS.

No, I live well with ALS.

Thank you, readers, for following me and for your support these past six years. I look forward to writing many more columns and sharing my ALS experiences with you. Now you know why my column and my sign-off always include the words “living 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.