“The room lit up! Living in hospital for six months, basically preparing your funeral, and then getting that call…literally I knew my life was going to change.”

I find it really fascinating how these women (and men) have found their way onto the
burlesque stage. Out of everyone I’ve interviewed in the past two years, I’m yet to find anyone that has had the same path to the same destination – and that’s what makes everyone so unique.

L’amour Le Monde’s journey into burlesque is not only unique – it’s downright remarkable and miraculous at the same time. Without giving too much away, L’amour was diagnosed in 2005 with Lymphangioleiomyomatosis (LAM) – a rare and life-threatening circulatory disease that affects the lungs, brain and kidneys. Ten years and a double lung transplant later, L’amour is a regular and popular performer on the UK’s burlesque scene.

As you’ll read below, L’amour’s story is filled with life, near death, survival and
adventure. Some of which involves record-breaking achievements.

Ladies and Gentlemen…L’amour Le Monde!

MG: Hi L’amour, good to talk to you. I think we’ll start where all of this began – the onset of LAM, the diagnosis, and your double lung transplant. Please do tell us all about it…

I was diagnosed with Lymphangioleiomyomatosis (LAM) back in 2005, but I’d basically been sick for ten years prior to the diagnosis. The disease is one of the rarest in the world, which is why it took ten years to diagnose. At the time I was told that collapsed lungs usually occur in tall, slim, athletic people – usually men and not women.

I had a collapsed right lung – it actually happened once and then twice, and the doctors thought it may happen a third time so I was told I would need an operation to pin my lung to my ribs so it wouldn’t happen again. And that in itself was very traumatic for me. The pain of having a collapsed lung is horrific.

The first time it happened I didn’t get enough painkillers so I felt them cut me up during the operation, which was probably my worst nightmare! That was when everything started to happen with my ill health and I continued to live in pain. I used to admit myself into hospital, in to A&E, just to say I was in pain, but nothing was ever found, all I had was an X-Ray. With an X-Ray you can’t really see what’s going on in the inside.

I even went back to the surgeon to tell him that I was in a lot of pain. The surgeon said the pain was due to the lung wanting to collapse again, but it wouldn’t because it had been pinned to the ribs. They couldn’t give me any more medication, or even more painkillers because I’d have been away with the fairies. So I just basically got on with my life.

I was a very active person. I was going out, having fun, I was working, doing sports, dancing. But I did struggle on and off, it wasn’t all the time, but sometimes the pain was so bad that after seven years I was with my dad and I was short of breath, and he said ‘what’s wrong, what’s wrong?’ When I told him he asked why I’d been living in pain for so many years. I was taking painkillers as and when I need them to get me through the day. I was referred to a pain specialist but they weren’t sure what the problem was. They told me it was possible that the pain I felt came from the type of operation I had had as it can take the nerve endings seven to ten years to heal.

The problems all come about because the disease was so rare at the time, almost unheard of, that nobody knew what to do. And then about ten years later I was actually working in a gym doing sales, showing somebody round, and I was getting really out of breath going up a flight of stairs. I thought ‘this is bad they’re not going to join up!’ I was joking to people: ‘this time ten years ago my right lung collapsed, so wouldn’t it be funny if my left lung had gone now?’ Little did I know!

I actually called my parents, who lived nearby, and they picked me up from work and they said I looked yellow, so they asked if I wanted to go to hospital. I was like: ‘no, no, I’m fine, I’m tired, I had a long day, just take me home.’ I was a very stubborn person! And then on the journey home I took a turn for the worse and I told them I needed to go to hospital. I was rushed to a north London hospital and they thought I was having a heart attack.

Then they did an X-ray and found out that both my lungs had collapsed – which is why I was barely able to breathe. They said they’d need to perform an emergency surgery to re-inflate the left side of the lung, which is what I had ten years before on the right side when I didn’t have a lot of pain killers. I just lost it because I thought I couldn’t go through it again. But in the end I directed them as to how much painkillers to give me – so I could just about cope.

That was basically the start of my life deteriorating. They said that there is something really wrong and we think you’ve got a disease. I’d already been doing some of my own research after some notes I had seen in my file referring to LAM . It is really rare and not many doctors had heard of it. So they referred me to Harefield Hospital, which is a specialist hospital for heart and lungs.

So I was taken to Harefield and I basically bullied the doctor when I first met him! I was so bad it was like you see in the movies – helicopter, emergency landing, wheeled into the hospital! And I said to the doctor ‘have I got LAM?’ They told me to get some rest and that they’ll speak to me later after they’d performed some more tests. And that’s when they said I had LAM. At the time I was about the 61st person in the UK who had the disease. The doctors were still learning about the disease because at that point this hospital had only seen a few cases with the condition.

And then at that point I was then told that my right lung had completely gone – it was completely dead, full of wasted tissue, hundreds of cysts. I had a CT scan and that’s when they did the diagnosis. The CT scan showed all the cysts taking up my lungs. The pain I’d experienced over the years were the cysts growing inside my lungs and popping. Basically my lungs had been exploding!

The doctors told me that about a third less of the right lung was left, and that the left lung was almost gone. My left lung collapsed thirteen times within eight months, so every time I was left fighting for my life and I had constant chest pains and enough to infect my lungs. I call it my dark phase because it was really horrific. They told me there was no cure for the disease – the only hope was a double lung transplant – and that I had maybe three months to live. But somehow I managed to hold on for sixteen months!

Then I got so ill that I knew that I was dying. Three of the lung collapses happened in the space of the same week, and I had everyone come in to say goodbye to me in the hospital. It was the worst day of my life. Then they said they would try a groundbreaking surgery to pin whatever is left of my lungs inside my body so that I could still breathe.

The operation took four hours and I woke up five hundred and four hours later, which was three weeks! It turns out that they induced me into a coma because I didn’t take after the surgery. So when I woke up I was on a life support machine. I was taken off the transplant list. I became a vegetable. I wasn’t able to eat, walk or talk. I was basically bone. I was wasting away. I stayed like this for two months.

When you see my photos of me now I look nothing like what I’m describing! It was really difficult because all I could hear was a machine breathing for me. I kept having panic attacks. I was asking doctors to kill me. I wanted to die. It was no life at all…

Then I thought…I need to live! I’m young! I don’t want to die! I know it’s fifty-fifty waiting for an organ but I needed to get off the life support and breathing machines. And I did! I had a real battle but I managed to get off the life support. I couldn’t walk as I was so wasted away so I had to learn to walk again. I was using a zimmer frame – you don’t think when you’re growing up that at any point in your life you’re going to be hit with a rare disease.

But I found a strength. I found a character. I found an attitude. And I think that attitude kept me going. I was given a zimmer frame with wheels and I got so excited! ‘Formula One here I come!’

Due to being in the coma and coming off life support I wasn’t able to speak, so it was amazing to actually hear my voice again. It was amazing to eat and drink again. After about seven weeks, that first sip of water…it’s the things that you take for granted! It was on my fourth call, July 9th 2006, that the doctors told me that a set of lungs were go for a transplant, and was I up for it?

The room lit up! Living in hospital for six months, basically preparing your funeral, and then getting that call, literally I knew my life was going to change. They performed the surgery and they said that I was technically dead on the inside, there was no way that I should of lived and hung on for as long as I did. That’s when I knew I was a fighter. I was hanging for life, I was grasping. So that day when I had my transplant, that was when my life really began.

MG: That’s an incredible story to hear. How has life been for you after your transplant? 

After the transplant, which is a huge, huge surgery to go through, I was actually out of hospital within three weeks! The doctors were shocked as they said that was unheard of! I was in hospital for so long and then as soon as I had a transplant I was like: ‘yeah, yeah, I’m out of here!’ (laughs)

But it wasn’t all plain sailing – I was back in again a few weeks later. I contracted a virus and that damaged the lungs, and oddly enough the virus I had contracted was also very rare. The doctor said: ‘if it’s going to happen to anyone it’s going to happen to you!’ So I’ve never ever had full lung capacity since my transplant. I’ve mostly been on about 60% function. It’s gone up now, but I’ll tell you why later.

I realised that I needed to rebuild my life. I’d lost all my confidence, all my self esteem. I was covered in scars. The person I once was, was gone. So I thought ‘I need to get back out there, I need to exercise, get into dancing, build myself back up’. It wasn’t easy, I’m definitely not saying this is easy as recovery takes time.

And then I learnt about this thing called the Transplant Games. It’s like the paralympics, but for people who have had transplants, and it happens in the UK and Europe. And if you’re selected you get the chance to represent Britain at the World Games. So I used this as my stepping stone. The first time I did it I didn’t win anything, but it wasn’t about that, it was about meeting other like-minded people. And it opened my eyes. It was like ‘oh, my goodness, I’m not the only person!’ There are people involved that have had double lung transplants, heart, liver, kidney transplants and other transplants.

lamour-transplant-games
L’amour at the 2013 World Transplant Games

For me the Transplant Games became a bug! So I thought ‘now I’ve got a goal I’m going to get fit and build on this!’ And over the years I did compete in Europe and the UK and I did get selected to go to the World Transplant Games, which was very, very humbling. I think I’ve got about thirty medals! I’ve competed in sports like Squash, Badminton, Sprinting, Long Jump, all different types of athletic sports, and I never thought I’d be able to do this.

Then from that I came back to my interest in dancing because I used to dance before I was too sick to do so. And I thought I wanted to be in a dance show, so that was another goal. I ended up going back to street dance and doing a show.

And then I got this competitive buzz! I was just really hungry and having this transplant and basically being told you’re going to die and planning your funeral to wanting to do things. It gave me a kick up the backside. I’ve been given a second chance! I don’t take anything for granted – every day is still a bonus.

I decided that every year I’m going to set a challenge and raise awareness of LAM disease and raise awareness of organ donation. I think one of my biggest challenges was in 2011/2012 when I took part in the Clipper Round the World Race. The clipper runs every year and I did the last leg – leg eight. I started off sailing from New York to Halifax, Nova Scotia, then onto Ireland, the Netherlands, and then back to Southampton. I actually made history as the first woman with a double transplant to sail the Atlantic Ocean! One of my credits!

lamour-sailing
Breaking records on the Atlantic

That was the year that I saw my first recognition in the media. The Daily Mail was running an inspirational woman of the year award 2012, and I got into the top five, which was just so humbling. Then I thought ‘how can I better that?’

Last year I actually went to Ecuador to raise awareness for organ donation with a group of transplant participants. The goal that we set was to attempt to climb different mountains and a volcano – as you do! (laughs) The volcano had sulphuric ash coming out of it so it was too dangerous for us to climb. When I got back it had erupted, so it was a close call!

lamour-trekking-1
Another mountain beaten

That is almost where it leads up to the burlesque because I actually did my first debut performance in February of this year. But last year was when I thought I wanted to try and overcome my body issues and gain some body confidence. I joined a local burlesque group in Essex and it was just a bit of fun. I didn’t really think at that point in terms of it going out as ‘L’amour Le Monde’ and being an individual artist. But I loved it! I loved the buzz. I don’t know what it was but something inside of me just clicked!

I think it might be because I had a background where I’d performed dance and amateur dramatics, and my parents used to be magicians. It all fits together! I used to help them with their shows, even though I didn’t have that much of an interest in magic back then. It put me back into reality – you have to get out there and live your life.

And then I thought ‘I want to do this!’ But I knew if I was going to do this I would need a name and a social media page. Finding the name is obviously quite difficult, but then L’amour Le Monde came up and it means ‘Love of the World‘.

I just thought ‘well that really is me down to a T!’ I love the world and I’ve been given a second chance. I used to do art and be an artist and ironically I used to sign my paintings with my first name and the surname ‘Le Monde’ because one day I thought I would conquer the world! Little did I know! Not that I have, but you know…

I knew I wanted to do an act based on my story so I then went about branching out and doing different workshops with people like the Burlesque Stars, who are all known artists. I also did some one to ones to pick up tips and improve.

And then this Ecuador fundraiser came up last year so I put burlesque on hold because I needed to train for Ecuador. I did Ecuador and came back and I was ill for four or five months. So again it put everything back on hold.

Then at the start of the year I was feeling better and I thought ‘it’s now or never!’ I was applying for Lady Ink UK and I thought ‘right, I’m going to do it, get my act out there, get someone to work with me to get this message across’. And I did it! Literally everything now has really just flowed, it’s been incredible.

For me saying all of this – it’s still surreal. This is somebody else’s journey, someone else’s story. This is something that I’m reading in a magazine saying ‘oh, my god!’

The important thing with a transplant is that I know that it’s an extension. I know it’s not for ever – it’s a gift – a very precious gift. Every day for me I wake up and I’m breathing, it’s a miracle. I can’t take anything for granted. I’m amazed I’m still here after ten years, but I think you should live your life as if every day is your last. It’s been a valuable lesson to me. I wish I never suffered in the way that I did. Just talking about it sounds so matter of fact, but the truth is it was horrific and painful. It was very traumatic.

But it’s been a lesson and the reason why my lung function has gone up to 70-75% is because I was actually diagnosed with another condition two years ago. The shortened name is OB but the full version is Obliterative Bronchiolitis . OB leads to chronic rejection – the doctors told me that I would be deteriorating and that my lung function would go down. It was quite likely that I would need extra medication to stabilise. Being the stubborn cow that I am I was like: ‘I’m not taking any more medication, let me see if I can help myself!’ (laughs)

And I really believe that. I know it doesn’t work for everybody, but for my lungs to really function I need to exercise to keep them working. So at that point I joined a boot camp and I did that solidly for about two years. The boot camp involved army training so that’s not for the faint hearted. I did struggle, but I was so determined to be like everyone else that I kept going. I can’t run like everyone else, I can’t keep up like anyone else, but I did everything at my speed and my lung function went up.

When I went back to hospital two years later they said that was unheard of. They said I should of been deteriorating but I’d stayed alive. I haven’t gone into chronic rejection and I’m stable. I still get breathless, but burlesque is good in that respect as I’m not running around at a hundred miles an hour. But, I will get breathless going up a flight of stairs or when I’m travelling to gigs with my kit. But to look at me you wouldn’t know I have a condition as it’s an internal disability.

On the inside it’s a struggle but on the outside I’ve got this big smile on my face! I wear all my different colour wigs and make-up and I’m a very positive person and I’ve learned a lot from what I’ve gone through and it’s given me a lot of strength. And that’s an attitude – but a positive attitude. Get on with it no matter what, even if it takes me five times as long to do something.

I used to struggle with rhinestoning costumes as I get really bad shakes. In the early days I used to have people help me, but I thought ‘no I’m going to do this myself’. If I struggle I will struggle even if it takes me long time to do the work putting one stone on after the other. I turn every negative in my situation into a positive.

MG: Which is where burlesque comes in. What acts have you got and how do you come up with your ideas? 

I’ve got two acts and I’ve got a third one coming along soon. The first one is called Breath of Life, and it’s about my journey. The first act sees me coming on in my hospital gown with my oxygen and my mask, and I’ve actually got a genuine oxygen cylinder. It’s really heavy which is why I get out of breath going on the underground or wherever I’m going with it.

And those layers come off and it shows the despair, the sadness, the pain, which it was, and then when that comes off it’s a transition. I get into two sets of fans, like a clam, and then I come out if it and dance with the fans. The purpose of the fans is that they represent my lungs and then it shows the movement of freedom, the passion, the enjoyment of actually having a life, so it’s a very emotional piece.

lamour-le-monde-by-joust-4
L’amour – sweeping out of the fans (Joust Photography)

It’s been very well received and I’ve had some really good feedback. I’ve had people say they’ve even been reduced to tears as it’s poignant. It makes people think about organ donation, which is what I wanted. It’s not a traditional titillation. I’m really happy. It was very difficult in the early stages to put it together as I found it really hard – it was bringing back memories and I was crying. But now I can go out there and be confident with it and tell my story. It might still touch a nerve as the music that I use is ‘Between Two Lungs‘ by Florence + The Machine.  The wording and the lyrics touch a chord right inside me when I’m dancing. People can feel the passion and I feel that I can hopefully relay it.

lamour-le-monde-by-joust-5
Breath of Life (Joust Photography)

And from there I thought ‘what have I got that is so far in the other end of the scale?’, and I thought what about doing a drag type routine. And I do! I have another act now called Madame’s Yellow Bird. And it’s based in the concept of Van Gogh, but I am the female equivalent, Madame Van Goha. So she loves to paint, she loves life, and in her madness she loses her ear, and she ends up talking to a stuffed bird. It’s totally bizarre.

There’s lip syncing with a yellow puppet, and then obviously her clothes come off and it’s a very upbeat, zany, colourful, routine. Which again, people have said you’ve gone from nought to sixty, it’s just so different. And the third act I’m working on now is completely different. It’s a drag king act, I don’t want to say too much as it’s a little bit out there. So my two main acts are the Breath of Life and Madame’s Yellow Bird and then the drag king I hope to have out from sometime next year.

MG: What has been the best moment of you burlesque adventure so far? 

You know what, I can’t even say or pinpoint even one because every experience I’ve done has been so different and it’s all been so positive in terms of the venue or the crowd. I’ve done a lot of different venues now and I’ve done some competitions and feedback is crucial. You can constantly pick up tips and feedback from people who have been in the industry.

lamour-le-monde-by-rhian-cox-photography
Madame Van Goha (Rhian Cox Photography)

But I’ve loved everywhere I’ve been. I’ve loved the competitions. I’ve loved performing. I love the people. I think the people make it. Like I said, the Breath of Life, people have been overwhelmed. The drag act people have found funny. I would say in terms of the experience I’m still learning. I’m obviously still new, but I’ve been very fortunate to have got into some finals at some of the competitions that I’ve been to. I’m in the north Wales Burlesque Festival and Tassel Off in Leeds (2017).

There’s so much talent out there but it’s nice that I’ve been recognised. Also why I’m doing burlesque is because we are all so different and it has opened my eyes that it can be any kind of act and there will be an audience. Sometimes it’s about finding the right audience, but I think generally most types of acts are accepted. In terms of my ideas and how long it takes, I’m not one of those people who can knock things up quickly. I need to have an idea and a map of the story and come up with the music and what is going to work.

It does take me time to put everything together and get the costume. So it could take me months. But the Breath of Life I had the idea last year and I had things in my mind but it was this year that it actually happened. Again the drag act was an idea that I had and that turned around pretty quickly. It probably took less than two months and my ideas are I guess from personal experience or might just have an idea based on a costume or a piece of music. And I do want to do something different.

Most things have been done so it’s good to do something that hasn’t been done before. I know that no one has done Breath of Life, so I know that’s original! I know the concept of Van Gogh, I think it’s a different idea. I’m careful with researching and sourcing and I think things are going to take time.

MG: After everything you’ve been through, how does it feel to be on stage and performing in front of a crowd?

I love it! The thing that I’ve noticed is when I do Breath of Life it’s difficult to gauge the audience’s reaction. It’s not one of those whoopy cheery acts where you’re feeding off the audience and it’s only half way through when I do the clothing removal I get some cheers. Then at the end when you get the applause it feels good knowing the act was received well.

When I’ve done something like Madame’s Yellow Bird where you’ve got people whooping and cheering, it’s easier to see the enjoyment in people, where as doing the other act is quite serious. But I still love doing what I do and I feel like it’s where I’m meant to be.

I’ve gone through quite a long journey, putting my life at risk, pushing my body, climbing mountains, sailing round the world, and I didn’t know how my parents would be in terms of doing burlesque, but they were actually relieved! They were like ‘at least you’re not hanging off a mountain or halfway round the world or across the Atlantic being thrown about at sea!’ They’ve been really great and supportive. So for me doing this I can really focus and feel my emotions with the Breath of Life. I just enjoy it. It’s helped my confidence, self esteem and let people know that it’s okay to have scars and be different. I’ve overcome that battle as well in terms of body confidence. It is a positive experience.

MG: That’s a really great way of looking at it – it seems like everything is a positive in your life right now. What else do you find the time to get involved with? 

I do modelling as well! I’ve also been the face of Lady Ink for this year. I love tattoos. It’s a bit taboo post transplant but I did my research and I’ve now got one big tattoo that starts at the top of my back and goes all the across my body, my bum and down my legs, hips, thighs, really all the way down. But that said, hopefully no more ink!

lamour-le-monde-by-joust-6-lady-ink
Lady Ink 2016 (Joust Photography)

I’ll keep up with the modelling and charity work and raising awareness for organ donation. I’m currently trying to write a book about my story. I don’t want to die without my story going out there. When my time is up people will come across my story and my journey and that will hopefully inspire people.

There’s so much that I want to do. I want to do as much as I can. I’d like to do more sports, although I might be done with crazy challenges! I’ve had ten years of pushing and pushing and now I want to enjoy things that I like the most like burlesque, modelling, dancing, my campaign awareness. I want to stay well! I want to live as long as I can and I hope that I do.

We don’t know what is around the corner, we should all live our lives and do what we can. I know that it is difficult if you have a disability or an illness, but you need to do what works for you. Even joining support groups, or like when I met people at the transplant games, I knew that I wasn’t alone. It opened my eyes.

If you have a condition you need to remember to look after yourself. It’s easy to go a hundred miles an hour if you feel well but it’s also easy to get knocked back. It’s easy to get over excited especially if you want to do a hundred things! But then you get hit by something and reminded that you’ve still got an illness.

As I’ll always suffer from LAM, I just have to remember to pace myself. I have regular check ups that also include brain scans, so taking everything into account, I find that Burlesque works better with my lifestyle than training for something more vigorous. My advice to anyone out there with an illness or a disability is to get rest, join a support group, find something you can enjoy, and work to your capabilities.

If you’d like to see more of L’amour, you can find her on Facebook, Twitter and Instagram. You can also find out more about organ donation by going to organdonation.nhs.uk.

Gallery

Photo Credits

Joust Photography 
Roberts Glamour Photography
Rhian Cox Photography

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