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.
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Tali Gai
Thank you for noting how, too often, ALS is simplified as the "villain" in Hollywood films. Most recently, Blackbird. I was furious when I saw the trailer. And, as you noted, I realized the importance of protecting myself and my husband from such negative and even false ideas about an ALS diagnosis. However, I am thrilled to hear that there are more compassionate and fully developped and/or fact checked portrayals out there. Thank you.
MikeTiredRdyCure
I hope this trend will continue as well in Hollywood.
I hope the government can take ALS more seriously and fund this disease. Private companies are not delivering on the promises made. Not enough urgency.
I hope we can get one or two billionaires to fund ALS, get involved in finding a better treatment. We've seen what Elon Musk, one person can do in the right field.
I hope since Covid19 was taken as an emergency of the highest level, some of that energy and funding can come our way too.
Thank you for Article.
Trevor Bower
Thank you again for your writing about ALS. As we as a society gain more recognition of this disease the better the chances are for the necessary funding to finding a cure. Modern technology in combination with advanced laboratory techniques will hasten the cure. Additionally if we can add scientists from other disciplines we may also be able to prevent this disease in the future.
Laurie Tomasello
May was ALS awareness month. I didn’t see any coverage on our news channels in VA. Why not?! This has to happen! Thank God for Lou Gehrig day!! I heard as many people are diagnosed every year with ALS as MS! That’s crazy! Why don’t we get the attention, is it because we are gone too soon? A person with MS can now expect to live 45 years! We need the attention and focus on treatments! We die too soon and too young?