The holiday season and end of the year/decade is upon us!
As schedules slow down and we begin to reflect, I too began to take stock of the experiences that moved and shaped me this year. One of the most amazing experiences I had in 2019 was representing Patient Worthy at DISORDER: The Rare Disease Film Festival last month.
Now in its second year, DISORDER showcases films from around the world addressing the challenges of life with a rare disease.
I’m a writer and avid film lover myself, so while I was excited to attend – I didn’t quite know what to expect!
Would this be a series of informational documentaries? Emotional testimonials? Short films centered on a rare disease? Something else entirely different?
It was all of the above and more. SO MUCH MORE!
Screening over 50 films, the variety in style and subject matter was as dynamic as the rare disease community itself. Among the slate was low-budget, iPhone-wielding docudramas, bigger-budget scripted spectacles, poignant and stylized animations, intimate testimonials, and more.
And while I was surprised to see some familiar faces pop up in some of the films (J.K. Simmons! Chelsea Clinton!), the real stars were the rare disease patients who bravely bared their souls or lowered their guards to let us into their world; even if just for a few minutes.
I wanted to spotlight a few, to give you a sense of the incredible creativity and heart that went into this.
So, please, follow me… to the movies!
One of the more professionally produced films (which even screened at the famed Cannes Film Festival) was ‘Ian’ and it wasted no time setting a mood and pulling at the heart strings.
The animated Argentinian film tells the story of Ian, a young boy confined to a wheelchair as he feels limited and ostracized in his neighborhood park. Told with no words — only music and a poignantly stylized animation — ‘Ian’ seems to capture the indescribable feeling many children with a rare disease must get.
Ian watches as kids are free to move and play, and when Ian tries to engage, he is jolted back to his wheelchair; a metaphor for the unique perspective those who suffer from a limiting disability might have.
And while there was no one single rare disease spotlighted, the message came through in a universal way.
Get some tissues!
A DAY IN MY LIFE
‘A Day in My Life’ was as simple in its concept as it was effective: spotlighting the morning routine of someone with a rare disease. In this case, it was cystic fibrosis (CF), and film subject Amanda Korst very warmly invites us to live a day in her life.
That day begins with a combination of time-consuming treatment, including a nebulizer for breathing and a medical vest to help Amanda break down mucus in her lungs.
“And these are the medications for when I’m healthy. When I’m sick… it’s a different story.”
She adds that if she’s sick, her treatment regimen adds another hour or two, depending on the severity.
There’s not a lot of medical jargon or factoids thrown at us — just a little peak into the daily rituals of someone who needs to devote more time to her self-care than most.
‘Beyond Blue’ is more of your classic documentary-type style, with a beginning-middle-end story arc that stayed with me well after the film — and weekend — was over.
“There was a moment where I thought ‘Oh my God, I’m going to die from this.’ And then there was something inside of me that said ‘That is not gonna be your story.’
So with the help of Academy Award winning filmmaker Cynthia Wade, Barbara tells her story — her struggles with a stem cell transplant that kept her from her passion of swimming in the ocean.
‘Beyond Blue’ really captures the struggles and triumphs of recovering and forging ahead — and Barbara does it with dignity and honesty that I think many here will relate to.
THE DARK ROOM
This period French flick (original translation ‘La Chambre Noir’) really makes a splash with its production value and horror movie undertones, providing an effective metaphor for many of the undiagnosed diseases that exist.
The film is set in early 1900s France, where a teenaged girl watches as her mother succumbs to a mysterious disease. A Black Plague-like monster character is used to show the manifestation of the mysterious disease that is afflicting her.
Like ‘Ian’, ‘The Dark Room’ doesn’t depict a single, expressed diseased; leaving it vague and largely symbolic.
For me, it gave glimpses of the sometimes unscientific superstitions people of earlier eras used to describe diseases and afflictions they didn’t understand; it also provides an apt metaphor for how people today may feel about certain ‘invisible’ and undiagnosed diseases.
Here is a teaser trailer:
Sitting in the screening room, my sniffles or wonderment mixed with others, it became so clear to me how effective and probably life-saving this film festival was.
Art has always been a means to cope, to teach, to learn, and to mobilize.
After hours of being entertained and educated, I felt invigorated in my mission to help give a voice to the rare disease community — so I can’t even begin to imagine the effect this had on other rare disease stakeholders.