Locked In: Breaking the Silence follows director Xavier Alford as he faces an illness that he has, for years, been unable to confront. As his condition becomes impossible to ignore, Alford decides to make a film about his experience - exploring what the future holds for his body, his career and - most importantly - his family.
In his twenties, Alford felt invincible. However, he soon began harbouring a terrifying secret. He was experiencing a tingling sensation in his fingers. When he finally consulted a doctor, Alford was diagnosed with multifocal motor neuropathy (MMN). In this extremely rare illness (part of a group of conditions that includes the more widely known Guillain-Barré syndrome), multiple motor nerves are attacked by a person’s own immune system, causing significant limb weakness.
Alford explains that, until recently, his MMN diagnosis has not prevented him from living a full and active life. He is married and has two children - a daughter and a son who both appear in the film, asking the frank questions that children can often vocalise more easily than adults.
A successful documentary filmmaker, Alford can now hardly hold his camera. As a result, after years of hiding from MMN, he is driven to make a film about his illness “before it is too late”. Quoting The Karate Kid’s Mr Miyagi, Alford concludes that “the first step to victory is to truly understand your enemy”.
MMN proves frustratingly elusive, however. While critical research is underway - including a study by Simon Rinaldi (who leads the University of Oxford's programme of research into inflammatory neuropathies) that is featured in the film - so much is as yet unknown.
In most cases, MMN progresses slowly. There is no cure but, every three weeks, Alford receives intravenous infusions of antibodies. This treatment, as we see in the documentary, gives him a temporary respite with more energy and mobility. What he really wants, of course, is a way to stop the illness in its tracks.
Meanwhile, Alford searches for others with the same condition, trying to understand his own future. He speaks to several people with an intimate (and, often, nightmarish) knowledge of what it is like to be locked inside your own body and meets Winston - who is ten years ahead of him on MMN’s terrible path.
Alford forms a particular bond with a man called Scotty. 32 hours after first developing symptoms, Scotty was locked in - suffering from Guillain-Barré syndrome. Three years later, having made an incredible - if not full - recovery, Scotty offers Alford advice about the importance of mental resilience and having the strength to face his fears.
In these moving, life affirming scenes, Alford contemplates the wide-ranging impact of his illness and starts to understand the power of sharing his experiences and unlocking his emotions.
It is clear throughout the film that Alford’s main fear is for his wife, Anna. He feels a tremendous sense of guilt and is terrified about what his MMN means for his marriage. When he meets those suffering with a similar illness, his focus is always drawn to their loved ones - the carers by their side.
At its heart, Locked In is a deeply moving love letter from Alford to his wife. This powerful and compelling documentary begins and ends with the couple - Alford in front of the camera, Anna off screen. They face a terrifyingly uncertain future - one that, until now, Alford has never wanted to discuss.
Understandably Anna struggles with Alford’s newfound desire to talk and is certainly reluctant to do so on camera. However, Locked In is the start of a conversation that they both desperately need - along with, as per Anna’s request, some very high quality red wine.
Locked In: Breaking the Silence is released on BFI Player and BBC Four on 30 November and was made with the support of the BFI Doc Society Fund.