http://society.guardian.co.uk/health/story/0,,2000991,00.html
I won’t be happy until I lose my legs
Ever since she was little, Susan Smith has felt there is something wrong with her body. Her determination to ‘fix’ things has twice landed her in hospital
Monday January 29, 2007
The Guardian
I was six when I first became aware of my desire to lose my legs. I don’t remember what started it - there was no specific trigger. Most people want to change something about themselves, and the image I have of myself has always been one without legs.
To the general public, people like me are sick and strange, and that’s where it ends. I think it is a question of fearing the unknown. I have something called body identity integrity disorder (BIID), where sufferers want to remove one or more healthy limbs. Few people who haven’t experienced it themselves can understand what I am going through. It is not a sexual thing, it is certainly not a fetish, and it is nothing to do with appearances. I simply cannot relate to myself with two legs: it isn’t the “me” I want to be. I have long known that if I want to get on with my life I need to remove both legs. I have been trapped in the wrong body all this time and over the years I came to hate my physical self.
As a teenager, in the privacy of my own home, I used to play by myself at being an amputee. I would pretend I had one leg, strapping the other one up behind me and wearing oversize trousers so there was no shape. I knew even then that it wasn’t normal, that it wasn’t something to share with friends or my parents. But, trussed up like that, I would be quite happy and satisfied for a while.
At 23, I met my future husband and we were very happy together - but I was leading a double life. He did not know about my BIID at first so it wasn’t easy to pretend. I went through periods when having him around was very disturbing. I gradually withdrew into myself, becoming private and secretive.
There is no instruction manual for those who want to remove their own limbs, but I always knew I would do it. I had eventually, told my husband that one day I would lose my legs. It took many years for him to understand why, but he did realise it was part of me, and I suppose he accepted it.
Two years ago, I told him that now was the time and I was going to remove my left leg. My first attempt was in March 2005. Of course I was scared of dying, but I had got to a point in my life where I could no longer fight it.
First I needed to freeze and kill the leg so that surgeons would amputate it afterwards. I ordered dry ice pellets from a company near Edinburgh (the same stuff that is used in discos for the smoke effect). Nobody asked what it was for. I bought 40kg - it evaporates very quickly, so you have to buy a great deal. I put on layers of pantyhose, because you do not want it sticking to you, spread it in the back of the car and sat with my leg immersed in it for one hour. The pain was indescribable: it hurt so much I passed out a few times. I was scared, but more so of failure. I am that kind of person - I never fail.
I had not damaged the leg enough to have it amputated in hospital, so the following September I made a second attempt, and this time I stayed in the dry ice for four hours. I was sat with my legs across the back seat of the car, the windows wide open and the footwell filled with dry ice, covering the leg and topping it up as it evaporated. When I could bear no more I called my husband, who came and pulled me out. The leg was hard as stone. I had third-degree burns and the pain was horrible. But it wasn’t enough: I now know you need a minimum of six hours to kill a leg completely.
My husband drove me to hospital, but they refused to amputate. Incredibly, they said the wounds were superficial and that I would be walking within a few months. I really thought this time that the surgeon would give me the amputation I needed, but they seemed resolute. I went through all sorts of stages as they worked on my leg to save it. Sometimes I found the whole thing very funny, at other times I was crying, and sometimes I didn’t think I would live through it. I reached my lowest point when they discharged me from hospital four weeks later, after eight sessions of surgery, with the leg still attached. I thought I was going to have to make a third attempt. But this time I would have to do it differently, perhaps put my leg under a train so they would have nothing more than a stump to stitch up.
I slowly recovered my strength back at home. I had dropped from 9 stone to under 7 stone during the operations and wanted to give myself time physically to recover before trying again. But the leg became so infected that there was a danger of the bacteria getting into the bloodstream and killing me. I had so much fever I was sleeping 24 hours a day. My mum sat by my bedside, waking me every hour to make sure I was still alive. She has known about my condition since I was a teenager, but I know it shocked her to see me finally make an attempt. After nine months of agony, I told my GP that if I didn’t see someone fast, I would take off the leg myself. Within two days I had an appointment with a different surgeon.
The amputation, last June, went without a problem, and my left leg was removed from just above the knee. I felt better as soon as I came round. In fact, I felt so good in hospital that I was ready to go home straight away had they let me. My bag was packed and I was ready to leave. The Tuesday after the operation I drove myself home in an automatic car, and the next day I was almost back to my normal life.
I already feel more complete now that one leg is off. I have always been an outgoing kind of person, but my confidence is much higher now as my body is more like I want it to be. For the first time I feel able to move on and lead the life I have always wanted. In many ways I am starting again. I know it sounds odd, but it is incredibly exciting. Running the house, doing the gardening, going shopping - these are all things I manage easily by myself, even though now I might use a wheelchair or crutches. My husband has been supportive. He thinks I look a little strange missing a leg but says that, after all he has seen me go through, he accepts it. For now, he is just happy that I am happy, and I have promised to leave the remaining leg on for as long as possible; I know that losing that will be really difficult for him.
My youngest child is 10 and the eldest 15, and they do not know the truth about the removal of my leg yet. I told them I had a problem back in March and have had complications since. As a mother, I felt bad about not telling them the truth, especially when I was so ill I thought I might not make it. But now I feel it is better to protect them until they are old enough to understand that this was my choice. They will probably be in their 20s before I reach that point. Maybe they will figure it out for themselves before then, anyway. But I have given so much to my home and family that I feel entitled to do this for myself.
Only a handful of people know the truth about what I have done, and some of them call me crazy or mad. I suppose it is understandable. Even my sister doesn’t accept me as an amputee. She lives just up the road but hasn’t come to see me in months. In her eyes I am not a complete person any more. But I can’t let that affect me; the problem is more hers than mine.
I think BIID will stay taboo until people get together and bring it out. A hundred years ago, it was taboo to be gay in many societies, and 50 years ago the idea of transsexuals was abhorrent to most. I have tried to make the condition more understood but it is difficult to get a case out in the open by yourself. My psychiatrist went to a meeting last year in Paris, and many doctors there told her that they had operated on people who needed an amputation under mysterious circumstances, and how happy the person was when they woke up. It led them to believe that perhaps BIID is more prevalent than people think.
Removing the next leg will not be any easier than the first; the pain will be horrendous. But I have no regrets about the path I have chosen. In fact, if I regret anything, it is that I didn’t do this sooner. For the first time in my life, I can get on with being the real me.
Susan Smith is a pseudonymn. As told to John Cantlie.
