Paralysed at 28, my dad lived a full life thanks to a breathing machine... but as a toddler I nearly killed him when I pulled the plug out by accident
The monotonous, mechanical wheeze of the breathing machine which sat by his father’s bed, sighing in and out every second of the day, provided a rhythm to Jonathan Cavendish’s childhood.
Robin Cavendish had been paralysed from the neck down aged just 28, after a near-fatal bout of polio.
Pumping air into his lungs through a tube inserted into his chest, this electric machine was his lifeline. If it stopped, he would die within two minutes.
And because he and his wife Diana had made the radical decision that he should come home, rather than remain in a hospital as was the norm in the 1960s, ensuring the ventilator never stopped was their responsibility alone.
Jonathan says, matter-of-factly: “I realised quite early on my father was two minutes from death at any time.”
The regular power cuts of the era brought that fact home with a heart-inmouth jolt. Thankfully, there was a hand pump for such emergencies.
But being told that, as a toddler, he had once pulled out the plug and run away, leaving his father alone, choking, and spiralling towards oblivion, must have been horrifying.
Jonathan explains: “I was around two or three, I did it by mistake. I think I just tripped over it or pulled it out or was playing, and probably ran off.”
Robin found his cries for help fading fast as the artificial breath failed. Then, with seconds left, someone happened to walk into the room and slammed the plug back in the wall. Crisis averted.
Jonathan says: “There were a lot of those moments. But it didn’t play on me because my parents made it into a joke.”
Robin and his wife Diana’s laidback attitude in the face of such trauma is just one extraordinary facet of their story, which film producer Jonathan has brought to movie screens in Breathe, starring Andrew Garfield and Claire Foy.
In the film, the pet dog pulls out the plug. Jonathan, 58, who produced Bridget Jones’s Diary, says: “We couldn’t get the two-year-old version of me to do it.”
Robin contracted polio in 1958, when he and Diana had been married only two years. They were living in Kenya, where Robin was a tea trader, and Diana was expecting Jonathan.
Active, gregarious Robin was suddenly told he had months to live, and would be confined to hospital until he died.
He was flown home to Oxford to endure his “final” months as a sort of “living corpse”, but he and Diana refused to accept this miserable fate.
With enormous courage, and against doctors’ orders, Diana organised for Robin to be transported to the family’s home in Oxfordshire with his ventilator.
One consultant raged that Robin would only last two weeks.
But with a special wheelchair and a mobile, battery-powered respirator designed by a friend, the scientist Dr Teddy Hall, and a van with a hydraulic lift for his chair, Robin went on to live a fulfilling life for a further 35 years.
He campaigned and did fundraising so other disabled people could have access to the same freedom-giving equipment, all the time changing perceptions and lives.
His positivity was incredible, Jonathan says, and completely infectious.
He says: “We had such incredibly good fun. I was probably 12 or 13 before I realised he was any different.”
There were even foreign holidays – although the first, to Spain, when Jonathan was seven, was a little fraught. The portable ventilator blew up as they drove round a roundabout outside Barcelona. Thank God for the hand pump.
Jonathan says: “I remember having to pump for 36 hours while poor Teddy Hall had to build a new machine and get on to a plane, fly to Barcelona, and get in a
car and come and find us. My mother never panicked, but I remember her being firm on ‘Nobody must fall asleep’.” But they were the Cavendishes – so they had a party right there, on the roadside. Jonathan says: “Local people came, and a guitarist, and a priest. It was very funny.”
For the first two years after the polio struck, things had been very different. Stuck in hospital, Robin sank into depression.
Jonathan recalls: “He had to re-learn to speak and he tried to persuade anyone who came along to turn his machine off.”
He wanted nothing to do with his newborn son.
“He wouldn’t see me for the best part of a year.”
The decision to take Robin home from was beyond brave. People with disabilities like Robin’s were forced to live in “iron lung” breathing machines, lying flat on their backs,
utterly imprisoned.
But it was a gamble the couple won. Jonathan says: “My father never looked back. There was no self-pity, just a determination to have a good time and make a go of our life.”
As a child and teenager he benefited from having his father at home all the time.
They spent hours talking, playing board games and watching TV. Robin, who had coached his Army football team, cheered him on at school matches.
Jonathan says: “He would turn up with my mother and, sometimes, I was so embarrassed. He would lecture our coach on tactics.”
Now 83, Diana, who has never remarried, looked after Robin’s care almost singlehospital
My mother did the bedpan, the bottle, but I never saw a low point JONATHAN CAVENDISH PRODUCER OF BREATHE
handed. Yet the couple’s great love affair survived.
Jonathan says: “She did the bedpan, the bottle, but I never saw a low point. She was a very beautiful woman, and only 24 when this happened, but she never thought about leaving.
“My father did encourage her, slightly jokingly. I think he probably did it to check she didn’t want to leave. But it wasn’t an issue, ever.”
And Robin never suffered from depression again. Jonathan says: “He was the life and soul of the party.”
At no time more than the very end when, aged 64, he decided he wanted to die. He was suffering severe bleeds, caused by years of using the breathing tube, and risked drowning in his blood. He asked his wife and son’s permission, and they accepted his wish. Then, Cavendish style, they threw a series of “leaving parties”.
Jonathan says: “It was one of the best three or four months of my life. It wasn’t sad. It was a huge gift.”
The end, of course, was painful. A friend helped Robin take the necessary drug before Diana and Jonathan were called in to say a last goodbye.
Jonathan does not dwell on those final words. But he does describe one moment of particular poignancy.
After Robin died, the breathing machine was still wheezing, in and out. Jonathan was the one to turn it off for the final time.
He says: “It was weird, but a very moving moment. That machine had been the soundtrack to our lives.”