“I will better serve the world if I don’t have it.”
These are the words expressed by actress/filmmaker Marianna Palka. She is referring to Huntington’s disease, an incurable hereditary degenerative brain disorder which she watched her father die a painful death from as a young mam
In the acclaimed short documentary premiering tomorrow on HBO, THE LION’S MOUTH OPENS, Palka gathers her friends to find out if she has inherited Huntington’s disease. Several other family members got it, including her sister, so the potential for her is quite high. Featuring interviews with Palka, her family and friends, as well as footage from her childhood, the film chronicles how one woman decides to face her demons and accept this potentially life-altering information.
The doc’s title “The Lion’s Mouth Opens” is taken from lines from a poem that Bob Dylan wrote about Woody Guthrie called “Last Thoughts on Woody Guthrie” which Marianna recites aloud in the film. The combination of the her words and the home movies are haunting.
When her friend (actor, Jason Ritter, who she has both dated and worked with in the past but they are now friends) asks if she’s afraid, she tells him, “I vascillate between denial… the best place to be. It’s a cool island, a tropical island where you’re bathing in salt water and drinking coconut milk. I go from denial to curiousity to frustration to impatience.” Her friends, including Bryce Dallas Howard, are extremely supportive and are true testaments to her bravery.
Palka is fearless, having created a living will before getting the results. She knows this is not a disease that one can survive, and the documentary slowly builds up the suspense in the big reveal of whether she’s sick….or safe. Flashbacks of her father’s living days are scary as he watch his inevitable deteriation and I hoped so much for this beautiful young woman’s survival.
As she reflects on what led her to this point, Ritter asks if she is afraid of the results, but reassures her, adding, “I don’t think you would ever let something as simple as fear stop you from doing anything.”
Around 30,000 Americans have been diagnosed with Huntington’s disease, and approximately 200,000 more, whose parents were diagnosed with the disorder, have a 50% chance of developing it. Less than 10% of those at risk choose to take the test that reveals if they have inherited Huntington’s. Today, there is no cure.
Only eight years old when her father began showing signs of the disease, Palka watched him deteriorate over the years as, in her mother’s words, “each brick from the castle was just falling out.” Discovering that the gene mutation could be traced back to Palka’s paternal grandmother, she has a 50% chance of being affected.
The news isn’t good. We are witnesses to the scene where she is told she has the gene, with her girlfriends in tow, Howard and Moet Hashimoto. At 32, she’s told the illness could onset in her late 30s to mid 50s. The discovery is both baffling and devastating.
Palka leaves us with this: “Everyone faces demise. We’re all in that together as human beings.” She is strong but how long will her strength last? Taking a look at IMDB, she has been working hard, with many films coming out in the next year and she is living life like there’s an end in sight. But there doesn’t have to be. With effective medication, the damage to her brain can be prevented.
The problem is that these drugs don’t exist, for Huntington’s or Alzheimer’s, Parkinson’s, and other neurological disorders.
Hopefully, this documentary will push the struggle along and beautiful women like Palka will not leave our world until she has lived a full life.
THE LION’S MOUTH OPENS was nominated for a Short Film Grand Jury Prize at the Sundance Film Festival and received a Special Jury Award at Aspen Shortsfest and an award for Outstanding Achievement in Nonfiction Short Filmmaking at Cinema Eye Honors Awards, US. The film was directed and produced by Lucy Walker; producers, Marianna Palka and Julian Cautherley; shot and co-produced by Nick Higgins; co-producer, Sabrina Doyle; editor, Joe Peeler.
Watch this incredible documentary tomorrow night (6/1) tomorrow night at 9pm EST on HBO.
Disclosure: I’m a member of HBO’s Documentary Diplomats and was sent a review copy in advance of the premiere to screen. All opinions are my own.
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