Michael Cull’s life was turned upside-down after his leg began to swell to immeasurable proportions more than 10 years ago. Now he tells Cheryl Livingstone what life is like living with elephantiasis
Michael Cull’s day starts out just like anybody else’s. He opens his eyes after a night’s sleep, pushes back the covers and sits up.
That is where the similarities end, however, because, for Michael, even the simplest everyday tasks can prove fatal to him.
I met the 66-year-old outside his home in Union Street, Rosehearty, and at first glance he looks like any average person you might meet in the street. Once inside his home, however, I discovered the shocking extent to which his condition has reached.
Removing his shoes – now a size 15, having been a size 12 for most of his life – Michael then began to roll up his left trouser leg, but began to struggle around the ankle section. Eventually, he had to remove his trousers to reveal his leg – covered in sores, lumps and weighing two stone and stretching to 18in wide.
His leg’s horrific condition is the result of elephantiasis, a disease Michael has been living with for the past 10 years. Although not much is known about the tropical disease, it is understood to be caused by a parasitic infection and causes different parts of the body – most commonly the legs, arms and genitals – to swell up to major proportions.
Despite repeated trips to the Finlayson Street surgery in Fraserburgh, his condition remains untreated. Eventually, he was referred to a specialist in Dundee who said he believed it was elephantiasis. The specialist told Michael he had never seen this in the UK before and that you got it only in third-world countries.
This year, Michael visited the Hospital for Tropical Diseases, in London, where consultants also suspected it could be elephantiasis.
PEOPLE POINT AND LAUGH AT ME
One of the most famous people to have contracted the disease is Joseph Merrick. That name may sound unfamiliar to you, but if I said he was better known as the Elephant Man, you might know who I am talking about.
Joseph’s condition was at the extreme end of the spectrum, with swelling covering most of his body, while Michael’s infection – so far, anyway – has affected his left leg.
The infection started out almost a decade ago, after Michael was run over by a car while living in London. The swelling began in the knee area, but has spread right down to his toes and up to the top of his thigh.
It’s hard to imagine that your skin could swell up to such a size and it looks incredibly sore.
“I get more pain in my other foot, I guess from carrying all that weight,” he said.
Once a very active person who has worked since he was 14, including working for Nasa on computer systems for the Apollo programme, and giving regular talks about astronomy to universities, Michael admits that his life has changed dramatically over the years.
Whereas before he would walk around four to five miles a day, he now struggles to walk around the block. Life in Rosehearty has become quite a solitary one for him and he doesn’t always have the most positive experiences when he ventures outside.
He said: “Usually, I cover it up, even when it is hot outside I have to wear trousers; I can’t wear shorts. But sometimes my trousers do ride up and people can see it.
“People laugh and point at me. I’ve had people call me the Elephant Man. I think I am regarded as a bit of a freak show. If this was the 1800s, I could have made some money off it by being in one of those freak shows.”
Trying to laugh off the nasty responses in the street is one of Michael’s defences, but he admits that it’s not very easy.
“You never stop thinking about it; I think I even dream about it. I manage to sleep OK, but it’s like you get up and you see it and you just think: what the hell has happened?”
TROPICAL DISEASE
There is still a mystery around how Michael could have contracted the tropical disease. While many believe it is transported through a parasite, there is also an argument that it could be genetic.
But Michael is unable to rule out any of these arguments due to his family history being unknown.
“I was born in South America and was brought up on the Amazon. I was adopted by two English people who were working over there at the time and brought to England when I was around 12. So maybe there has been a parasite in me that has lain dormant for over 50 years.
“My adopted mother and father died shortly after we returned from the Amazon and I have had no luck tracing my family history, so I will never know if it was a genetic thing. But how it occurred doesn’t matter; what is needed is to treat it. I just wanted it treated quickly.”
The condition is also putting a strain on Michael financially. To be able to dress himself, the pensioner is having to have trousers specially made for him, costing around £50 a go. And he says the leg has been increasing in size more rapidly recently, meaning his trousers are becoming too small for him more quickly. He showed me a pair of trousers that he bought just six months ago that look like they won’t fit much longer.
Shoes are also something Michael is having to buy repeatedly, as the weight of his leg is wearing away the soles.
“I need to replace the shoes every two to three weeks and they are at least £25 a go. I can’t wear socks, either, so my feet get very sweaty; it doesn’t matter how often you wash them.”
As the leg continues to grow, Michael is becoming increasingly worried about having to carry out simple daily tasks such as taking a bath or even cutting his toenails.
“It took me around 12 minutes to cut my nails the other day,” he said.
“ I have to think about every little task, things that other people just do without thinking and take for granted. Having a shower or a bath could be very dangerous for me. I’ve been told that this disease isn’t fatal, but, because of the size the leg has grown to, I could easily fall and hurt myself.
“My foot catches on the step behind me, so it’s even a struggle to go up and down stairs.”
I WANT MY LIFE BACK
The infection is now starting to spread up to Michael’s hip area and he fears it could spread even further if treatment is not provided soon.
“I never thought about it being elephantiasis before, or knew much about it. But after it was mentioned, I started researching it, seeing what it can do, and it was quite scary.
“A few years ago, there was a woman on the BBC who had elephantiasis and her leg looked like mine. She ended up getting gangrene and had to have her leg amputated and was in a wheelchair. I am not prepared to end up in a wheelchair. I am at a stage now where I would rather have the leg amputated and have a prosthetic.”
Michael is now waiting to be referred to a hospital in England, where he hopes to have his leg operated on. It will be a significant operation which will include plastic surgery and could leave him in hospital for more than six months recovering.
“My leg will be very mismatched once I recover; it will look almost patchwork, or like corned beef. There might be loss of sensation as well and some nerve damage. The operation will be pretty traumatic, but I want to get back to normal and to be a smaller size again. I just want my life back.”
A spokeswoman for the Fraserburgh surgery confirmed that Michael is a patient there but could not comment any further. She said: “We can’t discuss patient information due to confidentiality reasons, but would be more than happy to discuss the situation with the patient directly.”
Anyone who wishes to contact Michael Cull can do so by e-mailing him at michaelcull2005@yahoo.co.uk