“If the wine don’t come to the top of yer cup
If the wind’s got you sideways with with one hand holdin’ on
And the other starts slipping and the feeling is gone
And yer train engine fire needs a new spark to catch it
And the wood’s easy findin’ but yer lazy to fetch it
And yer sidewalk starts curlin’ and the street gets too long
And you start walkin’ backwards though you know its wrong”
It was this poem, written by Bob Dylan, and inspired by his friend Woody Guthrie through which Marianna Palka found herself able to vocalize her confusion, frustration, hope and empathy on the complicated, emotionally charged potential that she might have Huntington’s Disease. It spoke volumes about her life, watching her father go through the heavy waves of the hereditary disease.
Directed by Lucy Walker, the film, “The Lions Mouth Opens,” takes us on a brief but powerful journey through the process of accepting love, support and friendship through the trials of facing an uncomfortable genetic possibility. Marianna sits beside her closest confidants as they discuss what they know about the disease and what it would mean to them for Marianna’s test to confirm that she, may too, be a future patient.
“And lonesome comes up as down goes the day
And tomorrow’s mornin’ seems so far away
And you feel the reins from yer pony are slippin’
And yer rope is a-slidin’ ’cause yer hands are a-drippin’”
“It’s a kaleidoscope of fascinating emotions that I think people feel, that I’m sure I felt, that some of them had faded and some of them have come more into focus,” says Palka when discussing how she battled her curiosity to know the answer.
Instead of delving into the fear and uncertainty that can accompany this kind of situation, the film focuses on love and strength—and how even a small community of friends can make the difference between a lonely, unlit descent into depression and a confidant stroll into the unknown.
“And yer sun-decked desert and evergreen valleys
Turn to broken down slums and trash-can alleys
And yer sky cries water and yer drain pipe’s a-pourin’
And the lightnin’s a-flashing and the thunder’s a-crashin’
And the windows are rattlin’ and breakin’ and the roof tops a-shakin’
And yer whole world’s a-slammin’ and bangin’
And yer minutes of sun turn to hours of storm”
“And to yourself you sometimes say
“I never knew it was gonna be this way
Why didn’t they tell me the day I was born”
Polk credits Walker with finding just the right moments to highlight.
“I just felt that given her scope of genius that she was the kind of person who could deal with the subject matter and the complexity of it. I wanted something to be communicated to the audience -to be loving, and I think Lucy was the right person to communicate that.”
In the U.S.A., the film will be broadcast on HBO during Huntington’s Disease Awareness Month, and after that it will also be available online. Walker and Polk hope the film will inspire others to donate to the Huntington’s Disease community. Already, the film has helped to raise over $105,000 for Huntington’s research.
As she walked us through her experience, Marianna hopes the film conveys at least one of her realizations: “This idea that it’s such a dark tunnel and we’re so alone? It’s just not true.”
FOR MORE INFORMATION ABOUT HUNTINGTON’S DISEASE
To donate to Huntington’s Disease research in Marianna’s name go here.
To donate to the Huntington’s Disease research at the HD Foundation go here.