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HD in “The Lion’s Mouth Opens”

Photo Credit to Lucy Walker Film http://www.lucywalkerfilm.com/

Photo Credit to Lucy Walker Film http://www.lucywalkerfilm.com/

Initially Released: 2014
Publicly Available: June 2015
Run length: 28 minutes

“I’ve always felt like I don’t have it”.
This sentence is how Marianna Palka, both subject and producer, begins the new documentary The Lion’s Mouth Opens. This short documentary, directed by Lucy Walker, known for The Waste Land and The Crash Reel, tells Palka’s story of deciding to undergo genetic testing for Huntington’s disease. At just 28 minutes, an expansion from the initial 15-minute version that was premiered at the Sundance Film Festival, The Lion’s Mouth Opens brings viewers into Palka’s circle of friends as they bear witness to her decision to know her HD gene status. The film begins with Palka hosting a dinner party for close friends the night before finding out the results of her genetic testing. As the story continues, viewers are given an insight to Palka’s life, specifically her experience with her father’s HD progression and the impact on her family. The dinner party scenes are interspersed with interviews of Palka, her mother, and Palka’s friend Jason Ritter, as well as home-movies from Palka’s childhood. These scenes seamlessly take readers back and forth between the community space of the dinner party and the painful past of Palka and her mother. The last 10 minutes of the film are dedicated to the hospital visit, and the reactions of Palka and her close friends as they discover her gene status.

As an autosomal dominant disorder, Huntington’s disease in one parent gives every child a 50/50 risk of having the gene mutation that results in HD. Despite this coin-toss statistic, only about 5-10% of those at-risk choose to undergo genetic testing. As one of the few, Palka’s decision to share her genetic testing experience in the form of a documentary is a valuable addition to existing HD literature and film. In her early 30’s and non-symptomatic, Palka expresses disbelief that her gene status is simply a 50% chance. Although the science says the odds are 50/50, for Palka it does not feel that way. The subtlety of this distinction is an important one for clinicians, caregivers, and advocates to consider in regards to genetic testing. For those at-risk, 50/50 is much more than a number, and in no way as simple as the flip of a coin. Palka describes the difference between gene-positive and gene-negative as two completely diverged roads with no middle option. Down one road is a death sentence and down the other is the ability to be “just like everybody else”.

There are many factors that go into an individual’s decision to be genetically tested, including his or her age, family situation, and personal ability to cope with the information. This makes the process of genetic testing a very complicated one, involving multiple appointments as well as counseling. The entire process takes at the very minimum one month, but typically longer. More information on the process of genetic testing can be found here. In addition, issues of confidentiality, discrimination, and the effect on personal relationships are all implicated in an at-risk individual’s decision to discover their HD gene status. As a result, one’s decision to be tested or not is an intensely personal one, and with both options the at-risk individual needs as much support as possible. This level of support is made clear in the dinner scene with Palka and her friends as they share the night and their care with her. During dinner Ritter expresses that, “we’ll all still be here tomorrow and we’ll all still love each other as much as we love each other now.” The Lion’s Mouth Opens shows how difficult it is to go through the process of genetic testing even with an extremely supportive circle of friends and family.

Another theme that The Lion’s Mouth Opens brings up is the nature and implications of Huntington’s disease as a familial disorder. Palka’s father became symptomatic when she was only 8 years old. Palka describes those years of her life as though going from a paradise to hell. Although her father is still alive, he is now a “ghost” of his past self. Palka and her mother describe the disease as cruelly and randomly taking certain members of the family, a genetic “Russian roulette”. For the Palka family, Marianna’s father, sister, and two cousins have all been taken as victims. Towards the end of the film Palka ruminates on the fact that she, her sister, and her cousins — with whom she has shared everything her entire life — may also share this burden of HD. The familial nature of HD often means that there can be multiple symptomatic individuals at one time. This results in an incredible amount of stress and strain on every aspect of a family’s life — emotionally, socially, and financially. Those family members that are early-stage or at risk may be forced to also play the role of caregiver for a late-stage relative. In addition, gene-positive and at-risk individuals must consider decisions around reproduction. Some may already have at-risk children, others may choose to undergo fetal testing, and others may abstain from having children. Reproductive issues and decisions around them are incredibly sensitive and must be addressed with compassion and understanding on the part of family members, friends, and healthcare providers.

A key and intriguing component of The Lion’s Mouth Opens is its title. The phrase comes from a poem titled “Last Thoughts on Woody Guthrie,” written by Bob Dylan for Woodie Guthrie, who died due to complications of Huntington’s Disease and was a long-time inspiration of Dylan’s. The poem itself is about 5-pages long and can be found here. Palka is able to recite the poem verbatim and does so in the film as a series of video clips of individuals affected by HD plays. This moment, about half way through the film, is an emotionally charged one as it brings together visual images of the experience of HD with the powerful lyrics of Dylan’s poem.

This film touches on genetic testing and the familial nature of HD, in addition to several other themes. Despite its range, the film manages to engage deeply with each topic while simultaneously connecting viewers with Palka’s story. Films such as The Lion’s Mouth Opens, which was aired on HBO during HD Awareness Month(June 2015), are essential tools in the continued struggle for widespread HD awareness. Awareness helps decrease discrimination against those affected with HD, and can also help increase research funding for better treatments and hopefully, a cure.

 

Resources
Find Local Resources through the HDSA
Film Website
Information on Genetic Testing
Resources for youth affected by HD

CJE 07/16/2015

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