PROOF LOVE REALLY CAN CONQUER ALL
Ellen and Tom had been dating three years when he was paralysed from the neck down. A decade on, they’re married with a new baby. Here, in an interview bursting with joy, they tell the story that’s . . .
EllEN NABArrO doesn’t have that exhausted air of the new mum struggling to adapt to sleepless nights and sudden life-or-death responsibility. She looks content and highly capable as she jiggles baby Ori, just seven weeks old, on her lap. ‘I suppose I was used to disrupted sleep before Ori came along,’ she explains.
Tom, her husband of six years, adds that their previous child-free life was ‘pretty good training’ for parenthood.
‘let’s face it, it takes us forever to get out of the house anyway,’ he quips, with a nod to the electric wheelchair he is sitting in.
‘Adding a baby and buggy to the mix won’t make much difference.’
Their relaxed can-do manner (they whisked baby Ori off from their Oxfordshire home to visit Ellen’s family in Dumfriesshire when he was just two weeks old) would be impressive in any circumstances. But when you consider that Tom is paralysed from the neck down, and needs round-the-clock assistance himself, it is quite remarkable.
The natural reaction is to marvel at how Ellen — now chief carer for both of them — manages, because this was absolutely not the life she signed up for when she met Tom back in 2004.
Now both 33, they were carefree students — he was at Brunel University in london studying electronics and microelectronics; she was on a gap year before starting a theatre design course in Cardiff — when they met on a train in Switzerland heading to a music festival.
Smitten, they spent the next five days together and continued the relationship, travelling long distances to meet up as they studied in different corners of Britain.
Physically they might have seemed an unlikely match — he was 6 ft 3 in, a strapping sports nut who played football five times a week and loved climbing, skateboarding and squash; she’s slightly built and more arty — but they made a committed couple.
W HEN he handed in his dissertation in 2007 (unknowingly securing himself a first-class degree), he immediately set off to Bulgaria, where Ellen was on an exchange placement. While she was at college, he took a train to the mountains for a few hours of snowboarding. What happened next nearly killed him — and would surely have killed most relationships.
While performing a flip, he hit a patch of ice and fell badly, landing on his head. The rescue team managed to find his phone in his pocket and he mouthed ‘Ellen’ before losing consciousness.
He went into cardiac arrest three times before they got him to hospital.
‘The doctors said he would have died if he hadn’t been so strong and so big across the neck and shoulders,’ Ellen says, as she sets Ori down to feed Tom, passing little pieces of beef into his mouth.
As it was, Tom had severed his spinal cord, and life as they knew it was over. An operation taking bone from his hips to replace shattered vertebrae in his neck would stop his neck collapsing, and a tracheotomy would allow him to breathe via a ventilator, but he would certainly never walk again.
Both their families rushed to Bulgaria. Tom’s parents are medics (his father is a doctor and adviser to the UN; his mother is a GP), but it was Ellen who best understood what Tom was trying to say when he regained consciousness.
‘I did the lip-reading,’ she says. ‘Sometimes there were a lot of swear words. I left those out when I translated for his mum.’
He was flown to Stoke Mandeville hospital in the UK, where he spent the next 15 months, shrinking to a pale imitation of his former self. Their relationship, however, not only survived, but grew.
‘When I thought I was going to lose him, I knew he was the one I wanted to spend the rest of my life with. It hadn’t been tested before,’ says Ellen. ‘It never occurred to me not to stay.’
They wondered what sort of life they could now carve out together. Could it possibly include all the things they had expected it to — travel, adventure, having kids, having sex?
The subjects were much in their heads — in strikingly different order. They catch each other’s eyes and laugh about who thought of what first. ‘I remember thinking “will we be able to have kids?”’ recalls Ellen. ‘I was thinking “Will Tom still produce sperm? Is sex even possible?” It was in that context. I didn’t once think “Will we be able to have sex?” ’ Tom scoffs: ‘Well I did. It was one of the first things I asked.’
The answer was a tentative ‘yes’. While many men less severely disabled do completely lose sexual function, Tom would not.
It is an extraordinarily private thing for a young couple to discuss, but they are well aware that it matters for people to understand. ‘Often a lower spinal injury can leave a man still able to walk but with no sexual function,
whereas a higher break can leave some muscle reflex,’ says Tom.
The upshot was that an intimate life together, and parenthood, was not off the agenda.
Tom left hospital in August 2008, and the next few years were spent adjusting to their new reality. They moved into an extension to Tom’s mum’s house, adapted for his wheelchair. They adapted their life too, pretty much, but a flick through their holiday photos challenges the idea that fun or adventure was curtailed.
Indeed, some of the images are downright jaw-dropping. One shows Tom on a boat in Italy. How is that possible? ‘With four very strong men and me in a sling,’ he laughs.
There is one of him in a bi-ski (think a chair on skis), lots of them at music festivals. ‘No, my sense of adventure didn’t go,’ he says.
Ellen says she sometimes wishes it had gone a little. ‘He’ll say to the ski instructor, “Let’s do it”, and I’ll say, “No, Tom, that’s too much.” He doesn’t listen.’ Tom nods to baby Ori. ‘I will now.’
The daily demands were exhausting, of course. Tom needs to be washed, fed and dressed. While they have help (personal care assistants are provided by the NHS as part of his care plan), Ellen takes on most responsibilities.
They got engaged in 2012, with Tom determined to do one thing himself — get the engagement ring. He designed it, and nearly came a cropper when he tried to collect it too. ‘I had the guy in the jewellers take my credit card out of my pocket, but he wouldn’t put in the PIN because they can’t do that. We eventually had to get the manager.’
Their wedding pictures are the most joyous you will ever see. ‘Everyone cried buckets,’ admits Ellen. Then came the tricky part. They tried for four years to have Ori, and did, in the end, need fertility treatment.
All that anguish is now over. His father may not be able to hold him, but he delights in having Ori laid on his chest where Ellen says he will sleep contentedly for hours. ‘You can’t hold him but he gets your warmth, he hears your heart,’ she says, positioning Ori on Tom.
For Tom there are conflicting emotions. ‘It was hard in the delivery room,’ he admits. ‘Ellen’s mum was there doing the practical stuff like rubbing Ellen’s back while I was helpless.’ Ellen chides him. ‘I needed you there, just being there. And you made me that lovely playlist.’ Tom looks at Ori. ‘I know I’ll never play football with him. I’ll be on the sideline. That’s tough.’
Perhaps Ori will struggle less with his dad’s disability than Tom does? ‘That’s true,’ he says. ‘And I know I can still be a good dad. I can give him other things.’
He will be an extraordinary dad, and they make a stunning team. Spending a few hours in their company has you marvelling at the miracle of love. Yet Ellen gets quite cross when people congratulate her for staying with Tom. ‘I find that irritating,’ she admits. ‘It detracts from Tom. He’s such a brilliant person. Of course I’d want to be with him. Not one of my family or friends ever took me aside and said, “Are you sure about this?” because they could see it was what I wanted. Being with him was what I wanted then, and what I want now.
‘I think I’m quite lucky he didn’t push ME away. In the spinal unit we saw other relationships that didn’t make it, and it’s often the case that the man does push the woman away. I think it’s hard to fight through that, if someone says, “You’d be better off without me.”’
But Tom thinks those who hail her a saint have a point. ‘I didn’t have a choice about how my life was going to go. You did,’ he says.
He did have choices, though. We talk about a friend he made in that spinal unit, rugby player Daniel James, who was paralysed from the chest down. Daniel decided he didn’t want to live with his level of disability and ended his life, at just 23, at Dignitas in Switzerland.
The parallels between their cases are heartbreaking. ‘It was so sad. I get it, yes. I understand why he felt like he did. Everyone has to make their own choice.’
TOM points out that he had at least two things that were immediately worth living for — Ellen, and his job. ‘I think it’s terribly hard when you can’t go back to the job you did before. I was lucky there, I could.’ (He had a job as a software engineer lined up, and the only difference is that he now relies on voice recognition software to use his computer.)
Has he ever come close to considering suicide himself? He nods. ‘In hospital, I did have a few moments of wondering if it would be better for everyone if I just took myself out into the middle of the road and . . .’
What stopped him was a sense of responsibility to his family, to Ellen. ‘I saw how upset Ellen and my family were as it was. For them to have to deal with anything else. No.’
He has had some stunning mentors, though. Before the accident, Lucy Hawking — daughter of the late Professor Stephen — was a family friend. After it, Prof Hawking, who knew more than most about the challenges of being disabled, got in touch. ‘Straight away, he offered us the use of his [adapted] car,’ says Tom. ‘He knew what a difference it would make.’ The first time Tom used it was to go to his graduation ceremony.
Then the couple went to see him. Professor Hawking made such a difference to Tom’s life that he will deliver a tribute to the scientist at a memorial service in Westminster Abbey. Ori, who was born just hours after Professor Hawking passed away, has the middle name Stephen in tribute.
‘He taught me an incredible thing about time,’ says Tom. ‘I don’t mean in a time-and-space sense, more in the sense that we all have finite time on this Earth and we have to make the most of that.’
He adds: ‘If anyone showed that you can still have a meaningful life with a disability, then he did.’
And now, of course, there is Ori. Cute-as-a-button in his Tigger sleepsuit, Ori (the name means ‘my light’ in Hebrew) is another motivator. Tom says himself that it’s hard to dwell on the negatives when you have a snuffling little bundle on your chest. ‘He’s filled a void in my life,’ he says.
They want more children. ‘Five more?’ he suggests to Ellen, who laughs as she puts her arms around both her husband and her son, and pulls in tight.