INTERVIEW: Breaking the silence of locked in syndrome with director, Xavier Alford

In an honest, intimately raw documentary, director Xavier Alford opens up about a condition that is slowly paralysing his body, here he speaks to Lorne Gillies about Locked In: Breaking the Silence.

Being locked inside your own body, with no way to communicate and a fully-functioning, active brain – it can be a hard prospect to grasp. However, in a rare umbrella of illnesses this notion is a reality.

For the last several years, documentary director Xavier Alford has been battling a secret illness: multifocal motor neuropathy, a condition that’s a type of peripheral neuropathy, linked to Guillain-Barré syndrome.

Now, Xavier is tackling his diagnosis head on in the only way he knows how, by making a film about it.

OPPORTUNITY

“The last film I shot and made, I was fairly convinced that this was the last film I would make and physically shoot,” remembers Xavier of his BBC3 documentary series, Drugsland. Nominated for Best Director at the BAFTA’s for this film, Xavier had doors opened to people who could commission his ideas.

Locked In: Breaking the Silence will air on BBC Four at 10pm, Monday 30 November 2020

It wasn’t long before BBC Four’s Storyville accepted Xavier’s pitch, a documentary highlighting the rare illness he lives with and speaking with others about their experience of being locked in.

There was a deeper sentiment behind Xavier’s decision to create Locked In: Breaking the Silence, too.

Xavier preparing his equipment Credit: BBC Pictures

HIGHLIGHT

Xavier emphasises: “I’ve just not talked to anyone about this and, actually, having a camera is a bit like having a protective blanket, it protects you. 

“I’ve had to film some really horrible things in my career, things that if I had to just stand a bear witness to it, it would be potentially quite traumatic, but when you’ve got a camera and you’re looking through a view finder you can watch things and not be so traumatised. So, I thought making a film was a good way of addressing this.”

Raising awareness throughout the film, Xavier was impassioned to shine a light on a rare, daunting illness that many people just don’t understand.

“It is really annoying to explain to people what you’ve got, but they can’t see what it is doing to you unless I use my right hand or walk really fast you won’t be able to notice, so I got really bored of explaining,” continues Xavier. “Even when you do explain you can see in people’s eyes they still don’t understand.”

ACQUIRED DISABILITY

Throughout the hour-long documentary – set to air on BBC Four at 10pm, Monday 30 November – Xavier confronts his experiences of hiding his illness from his family, colleagues and, in a sense, himself. 

Xavier admits: “I still have a long way to go before I understand what it means to have a body that is changing; the general perception of disability is broad. Someone who is born with a disability and is having a good life, probably would not like some of the comments I make about what will happen to my body when I reach that level of disability but I’m just trying to be as honest as I can.”

Following a range of powerful conversations with his wife and children, parents, and others who have experienced the most acute form of being locked in, leaving a person in a totally paralysed head to toe, with no eye movements at all.

LOCKED IN

There is no cure or identified specific treatment for locked in syndrome, but there is a scale of severity. For Xavier, his body is slowly being paralysed, whereas others may experience tingling before suddenly becoming paralysed, with no way to communicate and an active brain with thoughts, memories, conversations that nobody can hear.

“This is a rare illness, but it isn’t as rare as you may think,” continues Xavier. “I was amazed at how quickly you can go from feeling a tingling in your fingers and toes to being locked in – it’s terrifying. 

“People do say the acronym GBS, for Guillain-Barré syndrome, stands for ‘getting better slowly’. It is a rare recovery process to leave hospital without dying.”

During the documentary, Xavier meets Scott Blanch (keep an eye out for our exclusive interview with Scott landing Monday 30 November), Rob and Winston who all have varying forms of the illness. Meeting Winston, however, meant Xavier has to face his illness head on.

Scott during his recovery Credit: BBC Pictures

Xavier says: “When I met Winston, who has the same form of illness that I do, then there was nowhere to hide. This is what the illness does eventually, it was confronting and I went home and had a good cry about it.”

Despite the hardship and emotion that came with filming the documentary, the process has been cathartic for Xavier and his entire family.

CATHARTIC

“I understand my illness and I have confronted my own future that was just empty spaces of pure worry,” exclaims Xavier. “There is still worry, but at least we know what we’re worrying about. 

“For my kids, before I did this film my son thought he might get it, before this film my mum thought she may have given it to me, and before this film I hadn’t talked to my wife about our future at all; now, we’re not talking about it all the time, but we have talked about it and I haven’t given anyone evasive answers and I’ve not stopped talking until my wife has stopped. This is a huge difference.”

Scott in his own home Credit: BBC Pictures

THE POWER OF LOVE

Acknowledging that illness, acquired disability, or a curveball in life nobody was expecting has a ripple effect on the person directly impacted and their loved ones is prominent within the documentary. 

In fact, Xavier actively speaks directly to his own wife, Anna, about the illness he has been hiding before speaking to Winston’s wife about her new experience as an unpaid carer.

Xavier explains candidly: “Spouses often get lost in the middle of this illness and they often end up with lives that are dramatically changed, finding themselves in a role of a carer with the person they married. 

“There was a sense of mourning for their relationship in a sense, mourning the person they had married, they also said they didn’t feel like husband and wife anymore, which is really sad.

“I wanted carers to have that voice.”

Locked In: Breaking the Silence is an unwaveringly personal depiction of looking your fears directly in the eye and having challenging, uncomfortable conversations to reach some form of acceptance.

Xavier with Rob in hospital Credit: BBC Pictures

Committed to raising awareness of the illness, life with disability or a chronic condition, the roles of carers and independence, Xavier’s documentary will certainly spread knowledge and open up conversations in homes across the UK. 

Make sure to watch Locked In: Breaking the Silence on Monday 30 November at 10pm on BBC Four.