One of the most awful parts of my diagnosis was the loss of my career. Teaching was more than a job to me — it was part of my identity. I wish I knew then that my loss wouldn’t be as total as I had imagined. Don’t give…
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Always Learn Something!
If you are living with ALS, here’s a question for you: When was the last time you spent the time to learn something? It can’t include watching a TV newscast or scanning the news feed on your mobile device. I mean quality time spent with books or…
Laughter Is the Best Medicine
The 2012 comedy “Ted” contained a joke made at the expense of the movie’s villain. The joke, as expressed by a teddy bear come to life, was: “From one man to another, I hope you get Lou Gehrig’s disease.” This alarmed some ALS patients and advocates, who…
For those of us living with ALS, every day can have a stressful event. The key, I believe, is to move through the event and, if possible, remember it with humor. I recently came across a quote from the movie “Slow West” that reminds me that…
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…
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…
My first symptomatic expression of ALS may have been as I left a football game. I fell flat on my face. At the time, I blamed it on the sun and the beer, although that combination in the same dosages had not felled me before. Shortly after, I became prone…
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…
“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…
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