ALS Recognition Is Growing in Hollywood

Everyone likes being noticed — for the right things, of course. I like it when others recognize my unique talents and skills or a job well done. I don’t like being noticed because I have to use a rollator to help me walk. Or, because I move more slowly than those around me and sometimes slur my words when I talk. Or, because I have ALS.

Outside of the ALS community, ALS is not that well-known. It’s hardly ever mentioned in the mainstream news unless a celebrity happens to die from it. And the lack of public awareness of ALS is a topic of constant debate among patients.

That’s why I was jolted into attention the other night when I realized ALS was a plot point in the TV show I was watching called “Solos.“ It happened in the first episode, titled “Leah,” of the newly released series streaming on Amazon Prime Video.

ALS in Hollywood

In this episode, Anne Hathaway plays the role of a scientist in the year 2024 who is attempting time travel. Her mother has ALS, and Hathaway’s character wants to jump forward in time to bring back a cure. But she knows that time travel has its own consequences, which is a risk she’s willing to take. I won’t spoil the ending for you, but I encourage you to watch it and the other thought-provoking episodes in this series.

To me, having ALS serve as a plot point is a welcome sign of recognition — something I wrote about in my column “Let’s Go to the Movies.”

It tells me that perhaps the writers and directors had family or friends affected by ALS. They know there’s no cure, and for most patients, the prognosis is short. They may have heard of Stephen Hillenburg, creator of SpongeBob SquarePants, who lived only one year with ALS and died in 2018. Or, Nanci Ryder, a celebrity publicist, and Mari Winsor, known as the Pilates guru and trainer to stars, who both died of ALS last year.

The villain’s role

But being a story plot point has consequences. ALS plays the role of the movie’s evil monster, a “no hope, we’re doomed,” worst of the worst-case scenarios. And that’s a pretty tough label to shoulder for those of us like me, who live with ALS.

I counter the negative images by keeping a positive attitude and building a shield of mental resilience in my mind.

A shared connection

In the past few years, while working for Bionews, the publisher of ALS News Today, I’ve had the opportunity to meet writers like me, who represent the many rare diseases that exist in the world.

As we interact, noting our differences in symptoms and experiences, I’ve come to realize that we share one common desire: to be noticed, recognized, and understood. Not only by each other but by everyone around us.

Having Hollywood recognize ALS is certainly a good sign that the undercurrent of awareness is building.

I’m inspired by Joshua Lezmi, who published a review of “Solos” on Collider: “The series ponders what it means to be human, arguing that we are connected to others through shared experiences, even in our most isolated moments.”

I’m proud to be able to share my experiences with you. Together we can learn to live well while living with ALS.

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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.