Rob Burrow refuses to talk about his own mortality. The rugby league legend is determined to stay alive, because he has too many reasons to live, and too much love for his wife Lindsey, who has become his carer.
In a heartbreaking new documentary to be aired next week, the former Leeds Rhinos player declines to engage in a discussion with his consultant regarding his own palliative care and moving into a hospice, while at the same time urging Lindsey to find someone else after he has gone.
It is an incredibly tough watch, but one that continues to fulfil Burrow’s wish to lay bare the brutality of Motor Neurone Disease to help find a cure.
Burrow thought long and hard at the start of this awful journey about working with BBC Breakfast to grant such undiluted access to the unforgiving reality of his new life. He ultimately decided it was worth the world seeing him at his most vulnerable, for the greater good of education to find a cure.
His close friends were shown this latest 30-minute film at a cinema in Leeds this week. They included former Rhinos team-mates Jamie Peacock, Kylie Leuluai, Keith Senior and Stevie Ward, who have been regular visitors to Burrow’s home since his diagnosis in December 2019. And there were some very difficult moments to watch.
The 40-year old’s health continues to decline, although the rapid deterioration in his first year since diagnosis has appeared to slow in the months since.
As one of Rob’s close circle, this writer has witnessed the devastating effects of MND first hand. The first time we met after learning the life-changing news in 2019 things still felt normal, Rob driving to meet up, laughing, joking, paying the bill and heading back to his family.
He was still working in his coaching role with the Rhinos academy in those early post-diagnosis days. But within months he was being carried out of his car, his failing voice disappearing completely midway through one of our weekly lockdown Zoom calls.
Now, approaching three years on from being given two years to live, Rob is - in his own words - a prisoner in his own body.
His mind works, but nothing else does, with Lindsey, along with Rob’s parents Geoff and Irene, providing 24/7 care. Conversation remains possible through his Eyegaze technology, Rob blinking to type words on a screen to be delivered in his own banked voice. Quite how he banked some of the words he still uses is another question!
But even this communication has slowed too, and Rob’s friends always visit in small groups to ensure a dressing-room type atmosphere of close-to-the-edge humour without any long pauses, to try to replicate those glory days with his band of brothers at Headingley.
Put simply, Rob is still there, still Rob, razor sharp, loving and very funny. He is just trapped in a body that no longer works.
Rob and his family are extraordinary people, and that is what the new documentary captures with heartwarming strength. Lindsey would do anything for Rob, and her discussion of what future life may look like after her beloved husband has gone is devastating. He wants her to find someone else, because she is so young. For Lindsey that thought is simply inconceivable. “There will never be anyone else, no one can take Rob’s place,” she says.
We see the toll on parents Geoff and Irene, who continue to idolise their boy, but now host Rob at their home just around the corner while Lindsey is either working as a physiotherapist or on the school run.
Irene spoon-feeds her beloved son each day, taking every ounce of the tragic situation in her stride. Geoff struggles with that much more, regularly breaking down with emotion. “I’m not strong,” he says, before collapsing into tears.
The resilience of Macy (10), Maya (seven) and Jackson (three) shines through with love and humour that they most definitely get from their dad, while the extraordinary bond that Rob and Lindsey share is both uplifting and heartbreaking.
Some of the most emotional scenes are wonderfully shot, capturing the deep look of love as Lindsey holds her husband afloat in a swimming pool. And the shattering plight of a once fearsome rugby icon being carried to bed by his soulmate at night.
Between the heart-wrenching scenes are moments of hilarity, which Rob does as well as anyone, and displays of that steely never-say-die spirit which saw Super League’s smallest ever player become one of the most successful and trophy-rich stars in the game’s history.
One thing Rob’s friends have never felt able to discuss with him is the reality of his terminal illness. He is going to die, and that still feels impossible to talk about. It is always far easier to put another episode of The Office on or take the mickey out of Barrie McDermott’s teeth.
But this film does go there, and a scene in consultant Agam Jung’s office brings the reality of Rob’s plight sharply back into unavoidable focus.
She has to find a way to ask about advance care planning, end-of-life care and moving into a hospice. Rob flat out refuses to have the conversation, shutting it down as soon as he is able to send the words. When Jung suggests that he must have planned ahead for games during his career, Rob again hits back. “Yes, but I never planned six games ahead.” A steadfast and cutting retort, which brings laughs from a tension-filled room and the conversation just moves on. The palliative care doctor was waiting outside the room as this was being filmed, but was never brought in.
Burrow will be guest of honour when the Rugby League World Cup kicks off on Saturday with England against Samoa at St James’ Park.
The last time the competition took place on home soil in 2013 Burrow was wearing the England shirt himself and scoring tries for his country.
Nine years on and he will have the stadium on their feet once again.
Rob Burrow: Living with MND, Tuesday October 18, 7pm, BBC2 and BBC iPlayer
