The original title for “Exit Music,” changed at the eleventh hour ahead of its world premiere in Hot Docs, was “How Do You Feel About Dying,” and you can see why the switch was made: “Dying” is not, as a rule, a word that packs ’em into the aisles. Yet that initial question, which can be banal or bluntly confrontational depending on the tone in which it is asked, encapsulates the blend of frankness and delicacy that distinguishes Cameron Mullenneaux’s wrenching documentary study of a young cystic fibrosis patient’s final months.
28-year-old Ethan Rice drily answers it himself in the film’s opening minutes: “I feel sad,” he says with ironic languor, poking fun at the one-dimensional solemnity with which stories like his are usually told. The sadness goes without saying, but he feels much else besides: anger, exhaustion and impatience, with bursts of amusement and creative inspiration in between. “Exit Music” covers the spectrum with grace, good humor and no emotional filter: It’s an unabashed tear-jerker that earns its saltwater through candor rather than undue manipulation. An audience favorite at Hot Docs, it should travel the docfest circuit extensively; distribution, particularly through streaming channels, should follow in due course.
A bright, funny, inventive young man who has never been able to move out of his family home in upstate New York, Ethan has known most of his life that he’s going to die sooner rather than later, as the incurable genetic illness with which he was born gradually collapses his respiratory system. If living under that shadow has made him accepting of his fate, it’s also caused him frustration as he’s continued to outlive doctors’ prognoses — which once forecast death in infancy — through the years. Now in his late twenties, in constant pain and with his inability to live independently more pointed in adulthood, is he fighting to live or waiting to die? Ethan distracts himself from such brooding concerns with short-term art projects: He’s a composer and a deft stop-motion animator, and his own witty short films punctuate the documentary as sporadic, vibrant releases from a claustrophobic reality — just as they function in their creator’s own life.
Ethan is blessed with a palliative doctor who understands his existential quandary: “People are living with life-threatening illnesses, but when are they dying?” she asks matter-of-factly. It’s both unsurprising and wholly understandable that his doting parents and full-time carers, Ed and Edith, aren’t able to take quite such a philosophical view of the situation. The closer their son comes to dictating the time and terms of his death, the harder it grows for them to accept its inevitability.
In particular, the struggle for Ed, a PTSD-afflicted Vietnam veteran with an inordinate history of family tragedy, to make peace with yet another unhappy ending becomes a key arc of “Exit Music,” as the film tenderly traces a tangle of familial micro-conflicts born entirely out of love. Shooting discreetly, often on grainy video that compounds the sense of off-the-cuff closeness, Mullenneaux observes the family at such close quarters that it’s occasionally hard to imagine a camera being in the room at all. Some footage, meanwhile, is shot by Ed, and the intensified intimacy of this material is felt.
That “Exit Music,” edited with unfussy, time-tracking economy by Nels Bangerter (“Cameraperson”) and Amy Foote (“The Work”), avoids feeling uncomfortable or exploitative is testament to the evident rapport between the director and her subject, who embraces the film as a chance to leave a larger mark on the world, and to control the shortened narrative of his life — right down to the music and montage choices he requests to mark the end. The film’s closing sequences are every bit as devastating as expected, yet “Exit Music” shoots for some bittersweet hope amid the sadness: that accepting death needn’t always be an act of defeat.