'I lost all my limbs and my son stopped hugging me, but this illness saved my life'
Published 28/04/2016 | 15:50
“IT sounds ridiculous,” Alex Lewis says, looking down at his wheelchair, “but I’m kind of glad all of this happened to me.”
Two and a half years ago, at home in Stockbridge, Hampshire, Lewis came down with what seemed the commonest of colds. His symptoms were familiar: a pounding headache, bone-weariness, clogged sinuses. The next day he felt the same but worse, his headache now unremitting and the pain in his arms and legs completely excruciating. Then purple, bruise-like blotches began appearing all over his skin, spreading quickly. Concerned and confused, Lewis’s partner, Lucy Townsend, rang for an ambulance.
Once at the hospital Lewis was told he had, somehow, contracted Strep A, an incredibly rare bacterial infection from which a person’s flesh starts to eat itself. First “Strep” (as Lewis calls it) will attack the limbs, then work its way inwards, through the joints, past the vital organs before finally – fatally – destroying the heart.
“I think my immune system must have been weak at some point,” says Lewis, 35, looking back on a day which altered his life forever. “But, really, it was a complete fluke. They don’t know how I got it. I was just very unlucky.”
With the infection taking hold and developing into toxic shock syndrome, a spread which manifested itself in Lewis’s legs, arms and face visibly blackening by the day as his body died, doctors estimated the odds of survival to be around 3pc – a percentage that would drop to zero if they didn’t take the urgent action of amputating the affected limbs.
“I think Lucy and I were quite laid back and just said, ‘Oh, well that’s a bit s***,’” he remembers. “I understood the necessity, it was a case of needs must. There was no thinking about anything down the line – how I would cope, what we’d do – it was about the there and now.”
Doctors took Lewis’s left arm and both legs, leaving his right arm frail but intact, while his lips and mouth had already rotted away. When he returned to hospital having broken his arm rolling over in his sleep six months later, however, Strep was found to have gotten inside the bone, giving it a clear path to his torso. There was little choice but to remove the one remaining limb he had – mercifully below the elbow joint. With that, Lewis stared at a new, utterly unknown life as a quadruple amputee.
“I shouldn't have survived it,” he says. “I think 10,000 people a year contract Strep in some form, and of those about 9,600 die. Then of the 400 left, only about 10 have quadruple amputations. I’m one of the lucky ones, definitely.”
While in recovery at Salisbury hospital, Lewis was contacted by a filmmaker, Leonardo Machado, who asked to follow his recovery and adjustment for a documentary, The Extraordinary Case of Alex Lewis, which airs on Channel 4 tonight. Despite his condition, Lewis instantly agreed to be filmed, thinking primarily of his and Townsend’s four-year-old son, Sam.
“I wanted him to have something that would show him how important he was to Lucy and I through this, and help make sense of the whole experience. When Sam’s older and his friends ask what happened to his dad, hopefully this will help him explain.”
Like Lewis and Townsend, who are now engaged, Machado’s documentary spends scant time dwelling on misfortune or hospital beds. Instead the film celebrates a small family pulled closer together by difficult circumstances, galvanised by the challenges hurled at them.
When he returned home to begin rehabilitation in 2014, Lewis was insistent that Townsend, whose dedication and good humour is central to the film, continue her job running two award-winning pubs near Stockbridge rather than become his carer. That was crucial, he thinks, to maintaining a semblance of normalcy.
“It’s very tempting to give everything up for a partner, but I didn’t want Lucy to end up a live-in nurse, seeing me as her patient and having to take care of me,” he says. “I wanted her to continue to have a life.”
With Townsend working long hours, Lewis’s best friend, Chris, gave up his role as a ski instructor in France to move back to Hampshire and look after Lewis for six months, helping him get used to the practicalities of using prosthetics – at that time heavy, cumbersome NHS limbs.
“That, without doubt, got me through the hardest part. We would experiment with stuff during the day, like attaching a fork to my arm so I could eat, then cutting some of the prongs off to make it fit more easily,” he says.
Despite being at home, Lewis was unable to be left alone with Sam, with whom he had been inseparable before the illness. In some of the most heartbreaking scenes of Machado’s film, Sam appears reluctant to hug or kiss his new-look father, especially once Lewis had the dead skin cut away from his mouth to leave a small gap of exposed teeth.
“When he saw me at the Salisbury intensive care unit, Sam thought I had chocolate messily smeared around my mouth where the flesh was dying,” Lewis recalls. “He knew I was ill there, and it didn’t seem to change him too much, but after the surgery I realised I had to rebuild my relationship with my little boy. It was hard, but it just took time.”
Lewis had his mouth rebuilt last year in a pioneering 17-hour surgical procedure which took skin from his shoulder to be remodelled as lips (“a Simpsons mouth,” as Townsend puts it). He will soon receive more surgery to complete the job, including tattooing the skin to have it blend in with the rest of his face. The skin graft made things easier with Sam, as did new, state-of-the-art prosthetics.
“He thinks I’m a Power Ranger now, and loves all the different legs and attachments,” Lewis laughs.
When Lewis meets people in the street, most assume it is a bomb that’s hurt him. Over the last 12 months Lewis has spent time learning from countless other amputees, many of whom are injured servicemen he has met through sessions with the Special Forces charity Pilgrim Bandits. The experience, he says, has made him acutely aware of problems surrounding amputee care.
“The huge issue with amputation is money. It’s just not there,” he says. “A normal six inch cooking knife for me to attach to my arm is £650, for instance. A thrower for tennis balls, which enables me to walk the dog, is £600. If I can get some full prosthetic legs, which I hope to in the next couple of years, they’ll be £90,000 each – and that’s before you buy an ankle, or a foot. It’s not a package deal, by any means…”
Lewis gains an enormous leap of independence with every new prosthetics delivery – from small, stump legs to a hand cycle. Nothing comes at all cheaply, though, which is why he set up the Alex Lewis Trust, a charity aimed at raising the funds required to purchase even the most rudimentary of aids.
He’s is a long way off that target at the moment, despite some huge donations (including one from Coldplay), but as he gets the hang of his new life, plans for the future are emerging.
“I want to walk down the aisle on my wedding day, on legs, so we’re going to wait for that,” he says. “And I’ve set up an interior design firm, too, which I always wanted to do, while I’ll continue building the trust as well.”
As Machado’s uplifting film makes clear throughout, Lewis doesn’t view the last year of his life a dark period. In fact, quite the opposite. Before his illness he felt "off-course", drinking heavily and rarely spending quality time with Townsend or Sam. Now, though, he says he’s been forced to appreciate what he has.
“The whole thing allowed me to stop taking things for granted. We’ve met the most amazing people, had the most amazing times and laughs, and the three of us are now so much closer together.”
“This has given me the kick-start I needed to get going again,” he says. “It sounds odd, but I owe this illness a lot.”
The Extraordinary Case Of Alex Lewis is on Channel 4 tonight at 9pm, and thereafter on 4OD