Britain - BIID: I won't be happy until lose my legs

Britain - Body identity integrity disorder (BIID): I won't be happy
until I lose my legs... [2007-01-29 The Guardian]

http://society.guardian.co.uk/health/story/0,,2000991,00.html

First person
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.

· Do you want to write for First Person? Email:

—

© Guardian News and Media Limited 2007