Columns

Traveling with ‘Al S’

In the Ken Burns documentary, “Baseball,” during the episode titled “Eighth Inning: A Whole New Ballgame,” comedian Billy Crystal mentions in passing the (I assume fictional) name Al Smenglevitz. Years later, I co-opted the character as a coping mechanism — an alter ego. Only, I simply refer to…

How to Push Back the Mental Walls

My ALS diagnosis was in 2010. In the months following, I tried to learn as much as possible about the condition and how it would affect my life going forward. I discovered that medical experts knew almost everything about the physical progression of ALS and what to expect…

Wisdom from Champions to Silence My Inner Judges

Sometimes living with ALS makes me feel like I’m competing in the Olympics. I wake up in the morning and wonder how my body will perform that day. Then I lie awake at night rehashing all the things that went wrong. The voices in my head often sound…

Minding My Manners: ALS and Etiquette

“Manners are a sensitive awareness of the feelings of others. If you have that awareness, you have good manners, no matter what fork you use.” ―Emily Post In case we ever meet, I want to apologize in advance if I ever appear insensitive to, or unaware of, your feelings. That is…

The ALS Workaround Dilemma

If you’re like me and live with ongoing physical changes from ALS, you’ve probably used workarounds. What is a workaround? A workaround is a creative, temporary solution that solves an everyday problem. For example, in the real world, folks put red duct tape over a broken tail light…

ALS Cannot Change Who I Am

“You just got lesson No. 1: Don’t think; it can only hurt the ball club.” That was the advice that Kevin Costner, who portrayed baseball player “Crash” Davis, dispensed to Tim Robbins, who portrayed rookie pitcher Ebby Calvin “Nuke” LaLoosh, in the 1988 film “Bull Durham.” Ordinarily, I opt…

How I Took a Vacation from ALS

Hello again! I’ve just returned from my summer vacation — my month-long vacation from ALS! No, I didn’t suddenly escape my disease or experience a miraculous recovery; my ALS is most certainly still here. My vacation was a mental vacation; an abstention from any and all ALS-associated media;…

Caregiving Is the Real Labor of Love

Love, according to the Bible’s First Epistle to the Corinthians 13:7, “always protects, always trusts, always hopes, always perseveres.” As Labor Day approaches in the U.S., it is fitting to honor the one occupation that, within the above context, may aptly be characterized as a labor of love. Thank God…