Let’s Go to the Movies

During these past few months, like most folks I know, I’ve been watching movies — lots of movies. And by now, my wish list of titles is pretty well picked over. So, whenever a new release comes out, I jump on it, thinking “OK, Netflix, surprise me!”

Well, I got my surprise while watching “The Old Guard.” It checked all of the boxes of being a hero movie with a female lead, contained lots of diversity, and finished with a feel-good message. But my big surprise was discovering that ALS was a plot point.

Spoiler alert: In the movie, one of the key characters, named Mr. Copley, is motivated to join the bad guy’s side because his wife died from ALS. At one point, he recounts her battle, in which she lost the ability to speak, breathe, or “do anything.”

This movie got me thinking about the evolution of disability representation in the media. Especially my disability, ALS.

Are there movies showing ALS?

Of course, I’ve become more sensitive to the issue since receiving my own diagnosis of ALS in 2010. At that time, the media paid little attention to ALS. But in 2014, the Ice Bucket Challenge put a spotlight on the disease. That same year, Hollywood debuted two movies featuring an ALS patient as the main character. I cheered.

“You’re Not You,” starring Hilary Swank, tells the story of a classical pianist having to deal with the aftermath of an ALS diagnosis. Fighting her family’s disdain and an unsupportive community, she finally finds encouragement when she hires an offbeat, fun caregiver.

The 2014 biopic of British physicist Stephen Hawking, “The Theory of Everything,” shows the progression of his disease in vivid detail. But rather than dissolving into a sad storyline, the depiction evokes reality. Eddie Redmayne, who won an Oscar for his portrayal of Hawking, took great care and spent an extraordinary amount of time learning how to accurately portray the various symptoms of ALS.

Did you know that in 2019’s “Joker,” the infamous comic book villain played by Joaquin Phoenix struggles with an illness that is very real to anyone with ALS? While the movie never names what specific illnesses Phoenix’s character has been diagnosed with, he experiences fits of uncontrollable laughter. These same symptoms manifest in people who have ALS, traumatic brain injuries, and other neurological conditions. It’s called pseudobulbar affect, or PBA.

These episodes can go on for minutes at a time and can cause embarrassment, social isolation, distress, and depression. PBA is thought to affect 2 to 7 million people in the U.S.

Looking forward

ALS visibility in the media is definitely moving in the right direction. Although we have a long way to go, I applaud Hollywood’s role in raising the profile of disabilities and rare diseases. Especially since we’ve only recently emerged from a dismal ALS Awareness Month due to current global challenges. Unfortunately, this year’s event meant that traditional activities such as fundraising walks, runs, and auctions had to go online.

We who live with ALS are the stars in our own hero movies. We live with family, friends, and caregivers who are our supporting cast. Let’s go forward and look to the happy ending, because I believe we can live well while living with ALS.

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