Lucky to be alive...
Thankfully, Alex’s infamous laid-back attitude prior to his illness would become a lifesaver over his many months in the hospital and during the ongoing recovery that followed. Given the severity of his infection, Alex spent more than six months in the hospital, and including his amputations he underwent more than 100 hours of surgery, including 30 separate skin grafts. Perhaps the most notable of these was that skin was taken from his shoulder and moved to his chin and face in order to fashion him a new mouth: thick, inflated, pale lips that Lucy—now his fiancée—jokingly calls “a Simpsons mouth.”
It goes without saying that Alex’s near-death encounter with flesh-eating bacteria and his eventual loss of limbs changed his entire life. But in his specific case—which doctors would even joke was abnormal given his optimism—Alex believes the disease may have saved his life, too.
Before he got sick, Alex isn’t afraid to admit that he was lazy and was suffering from an alcohol problem. “I was horizontal, really,” he said about his laziness int he past. “It was the source of many an argument with Lucy because I wasn’t pulling my finger out, really.”
During his battle with Strep A, however, Alex would cite his easygoing attitude as the only was he was able to stay sane and cope with what was happening to his body and life. He said, “If I was a bit of a stress-head, then in that situation you’d lose it, ’cause you’re on the precipice of either coping or not. You do or you don’t. There’s no middle ground. Fortunately for me, for whatever reason, mentally, I could cope with it.”
His new reality as a quadruple amputee also forced Alex to have a reckoning with his overall health and lifestyle. “A drunk in a wheelchair is not a good thing, not very clever, especially if you’ve got no arms. It’s one thing to fall out of a wheelchair when you have arms, but it’s another thing when you haven’t got arms and, you know, just face plant.” Now he strictly limits his drinking, and he watches his diet as well, though it’s largely for a reason most of us don’t have to worry about. He jokingly explained that the shoulder skin that was grafted onto his face gathers fat more rapidly than the rest of his body, so he can tell if he’s been eating too much just be looking at his own face.
But more than his general mindset, Alex thanked his love for his partner and their son as the anchor that gave him the most will to fight and survive. “If you love someone, I think you just deal with it,” Lucy later recalled. “I told him that he had a choice, a choice to either feel sorry for himself, becoming a recluse and hideaway, or he loses his family. He’s got to feel like he’s bringing something to the party.”
Perhaps the hardest part of all was hoping his young son Sam would understand everything that was happening and still recognize him after all was said and done. Before the illness, the father-son duo were described as inseparable, but after the disease took a hold and Alex lost his mouth, Sam had a hard time going near him. Alex explains, “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. He knew I was ill there, and it didn’t seem to change him too much, but after the surgery I realized I had to rebuild my relationship with my little boy. It was hard, but it just took time.”
These days, Sam is already seven years old, and the family bonds over how Alex is like a superhero now because of his varying prosthetics. “He thinks I’m a Power Ranger now, and loves all the different legs and attachments.”
Needless to say, Alex’s life will never be the same following his battle with Strep A. Still, he considers himself one of the lucky ones: group A streptococcus infections are known to cause over 500,000 deaths around the world each year.
The bigger issue facing Alex now is simply getting on with life as best as he can. One obvious impediment here is life as a quadruple amputee. Alex stays more active than most people with four limbs do, but it all comes at a price. “The huge issue with amputation is money. It’s just not there,” he explains. “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.”
One of the biggest reasons why he’s eager to buy a pair of prosthetic legs? “I want to walk down the aisle on my wedding day, on legs, so we’re going to wait for that.”
Once he returned home, Alex was set on his family maintaining as much normalcy as possible. He urged Lucy to keep working at the two pubs she ran instead of quitting and caring for him at home. “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. I wanted her to continue to have a life.”
Aside from his family life, Alex has broadly expanded his social circle and worked with such groups as the Pilgrim Bandits, a charity developed through the British Special Forces that assists other amputees, mostly consisting of former servicemen. Alex was also the subject of a documentary by filmmaker Leonardo Machado entitled The Extraordinary Case of Alex Lewis. Lewis states he agreed to be the subject of the film in order to help himself, his family, and his friends understand and make sense of the entire experience. Much like Alex, the film focuses not so much on the debilitating disease and the time in the hospital so much as on his incredibly recovery and spirit.
Alex has returned to his hobby of interior designing, and he runs a business to help design pub interiors. He also travels and speaks at businesses, universities, and events, all the while helping the University of Southampton build its network of amputees and medical experts and prosthetics suppliers.
To continue aiding his recovery process, Alex and his family established the Alex Lewis Trust to help with fundraising and visibility, especially after his story became a news sensation in the United Kingdom. Though the National Health Service has helped to cover some of his costs and expenses, Alex knows he will need millions of pounds over the course of his lifetime to maintain an active and comfortable lifestyle. Check out the trust’s website to learn even more about Alex and his family and to follow up on any and all updates!
While it’s safe to say many of us may certainly meet our demise faced with a similar fate, Alex Lewis has thrived since he first got sick several years ago. “The year I lost my limbs was the most brilliant of my life. The man I was isn’t necessarily the man I am today—in a good way, I think.”
He continued, “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. It sounds odd, but I owe this illness a lot.”
What do you think of this incredible disease and recovery? SHARE Alex’s story with your friends to inspire them today!