13 July 2015
ByAppeared in BioNews 810
'I've always felt like I don't have it. I've always known that I don't have it. I will better serve the world if I don't have it.'
Marianna Palka's nervous opening statements as she prepares for a dinner party set the scene for the tense atmosphere of the 'The Lion's Mouth Opens'. The occasion for the dinner party is Marianna finding out the next day the results of her genetic test for Huntington's disease, which her father suffers from and which she has a 50/50 chance of inheriting.
Initially the film seems to wander a little, as Marianna and her friends play a guessing game with dice – perhaps a metaphor for our lack of control over probability – and hold hands, séance-like, while discussing their friendship, Marianna and the effects of Huntington's disease. However, as Marianna and her mother reflect on her father's diagnosis when she was eight and his gradual progression (which they tearfully describe as watching a castle falling apart one brick at a time) the documentary begins to pull at the heartstrings.
The emotional core of the film comes as Marianna recites the poem Bob Dylan wrote for Woody Guthrie after his death from Huntington's, from which the film derives its title ('And the lion's mouth opens and yer staring at his teeth'). She speaks it with feeling over a montage of home videos of people with Huntington's disease struggling to drink tea, stand up or hug someone. Suddenly, Huntington's disease seems very real, and the terror of knowing you could have this faulty gene hits home.
There is no middle road with Huntington's disease: if you have the mutation you will inevitably develop the disease, and the 'worse' the mutation – the more repeats of the base-pair triplet CAG in the Huntington gene – the younger you will develop it. Marianna's earlier declaration that 'a positive result is a death sentence' now seems less dramatic and more factual. The immediate cut after the poem to the hospital, and Marianna awaiting the outcome of her test, made me genuinely nervous.
For much of the film, Marianna seems in denial about her chances of developing the disease, and she is not alone in this – the documentary ends with the statistic that less than 10 percent of those with a 50/50 chance of having the gene take the test. This raises the question: when faced with a disease so terrible, which is currently without cure, does it help to know if you will develop it?
I don't want to share Marianna's results – although she has shared them through the film, I think the importance lies more in her answering this question than about the results of her genetic test. Watching this documentary should be about empathising with this difficult scenario and the people who face it. The film is a moving portrait of Huntington's disease and, personally, I found it deeply courageous of Marianna to stare into the lion's mouth.