My Story:
I
came into this world on the 17th April 1956.
From
what I now know, no one knew what to make of me. The first two weeks of my life
I was a female. What happened after that is a complete mystery as nobody is
willing to talk to me about it.
After
two weeks it was in some way decided that I was not actually female, but male
with ambiguous genitalia. This fact has been covered up by the entire family
since that time, never to be spoken about, well not to me anyway.
The
lies and deception that have occurred throughout
my life have taken their toll on me, making me very insecure and
unwilling to trust people especially
those close to me.
I
was married in 1982 to a woman who loved me for what I am and not what I should
have been. Ironically I met her whilst I was in hospital following even more
surgery. I fell in love with her the moment I saw her and knew deep down that
she was the one for me. Despite the fact that she was engaged to be married at
the time, I persisted in my efforts and it paid off. She is the only person who
really understands me and what I am really like. She has helped me through the
most difficult years of my life and has stood by me regardless of what I have
been through. She has wiped away my tears and been with me through two very near
nervous breakdowns, and one suicide attempt. I sometimes feel that I was
preventing her from leading a normal life and that I have denied her things she
would be entitled to if I were a “normal” Perhaps this is my insecurity
raising its ugly head again and the feeling that those that I love and care
about most will always do things to hurt me. I continue to punish myself for
something that was not my fault but I blame myself for not coping with it
better.
My
years in school were a minefield of emotions and secrecy, even as a junior it
must have been explained to the teachers by my parents that I could not stand to
urinate, and that I was very different to other boys, as I suffered the
humiliation of only being allowed to go to the lavatory when every other child
in the class had been. I didn’t understand what all the fuss was about as I
didn’t feel different to anyone else but was certainly made to feel that way.
Why did they have to treat me like such a freak ?
If
I thought that junior school was tough then I had the best yet to come. My time
in the senior school was fraught with problems especially as it was an all boys
school. I learnt at a very early age to cover up my problem and this was to
prove necessary if was to survive the ravages of my next 4 years.
I
fit into the macho image quite well, always being popular and making sure that I
remained that way. I had a reputation for being a tough guy and able to hold my
own amongst the best the school had to offer. This was my way of not allowing
anyone to get to close to me in case they found out my terrible secret.
I
was extremely precocious as a teenager, perhaps even before that, I had a great
affinity with the girls that I knew and I now know that this was my female side
coming out. This proved to be of great value in the years to come as it allowed
me to get any girl I wanted, much to the disgust of the real machos who didn’t
stand a chance whilst I was around.
My
first real girlfriend who I became intimate with was just so understanding,
although I didn’t know it at the time, she loved me for what I was and not
what I should have been, I treated her very badly, perhaps because I was afraid
to form a true relationship with anyone as those that I thought really cared
about me had always lied and cheated and had hurt me very deeply and had allowed
me to be hurt by others.
But
I continued on my lonely journey through life, never able to confide in anyone
in the fear that I would be seen to be a freak and an outsider, and yet I was
always on my guard, perhaps in the hope that nobody would discover that I was so
frightened and alone.
On
the odd occasion when I did feel that someone was getting close, I would detach
myself from them just to be sure that I did not give anything away.
Unlike
American schools the British education system did not insist on showers and the
like following games lessons, that was a great benefit to me as it meant that I
was able to prevent anyone seeing me naked and discovering that I was not like
the other boys.
The
worst was yet to come, as at the age of 12 years I began to develop breasts,
this devastated me as I was so into sports and so this made me withdraw and
avoid all forms of activity that would result in me having to wear T shirts etc.
I
found that I could not always avoid such situations and so devised a method of
strapping that would hide my embarrassment, this was ok as long as I was not to
take my top off. This sometimes happened when the teacher would insist that only
shorts were worn in the gym, to avoid this situation I would hang back in the
changing room until everybody had gone and then go somewhere else to avoid
having to be humiliated.
When
things became worse and my breast development continued, I requested for the
first time in my life to see a surgeon, this was my only hope of being able to
be a “normal”.
I
underwent the mastectomy at the age of 14 and even though I suffered intense
pain at the time, it was my decision and so I felt a little more in control of
my life. Even then nobody in the family would talk to me about what I was going
through and how deep the family secret really was. All I wanted was reassurance
that I was loved and liked for what I was and not something to be tolerated,
with my outbursts of anger and frustration but not knowing why I was so angry.
I
have two sisters and they were excluded from all things to do with my androgen
insensitivity.
Following
my mastectomy I was sent to see a psychologist, this proved to be very
enlightening as I was to discover some years later. He did not have a problem
with me but with my mother ,who, “Was blissfully unaware of my condition and
the problems that I faced in the future”. Luckily for me that was the only
time I was to see him during my teenage years.
I
have been told by my sisters that my mother was extremely upset every time I
went into hospital and that she thought that they were experimenting on me,
despite her feelings she continued the lies and cover up that had gone on in the
family for years.
I
must have been hated by my sisters as I was the one that got all the attention
whilst in hospital, taking my mother away from them both. My father visited on
rare occasions only, it was as if he could not bear the shame of having a son
that was not perfect. It must have been hard for them to accept, but the least I
could have expected was some kind of explanation or an attempt to explain.
This
inability to explain the situation to me was kind of easy to accept at first,
and for many years, until I discovered that I had at least one uncle and a
cousin affected by the same condition, my cousin lived in the US and had been
subjected to the humiliation of John Money, at least I escaped that !!
My
first recollections of surgery were at about the age of 6 when I remember being
separated from my family to go into hospital. I didn’t understand what it was
all about, all I did know was that I felt a deep sense of separation and guilt,
perhaps I had done something wrong that made my parents dislike me in some way,
and this was why I needed to be operated on.
Although
I should have commenced school at the age of 5 I can recall being kept back
until my surgery was completed. This was a great worry for my parents, as they
wanted me in school, I did not understand what was wrong with me as no one ever
had the courage to explain.
Even
after undergoing numerous amounts of surgery I was still unaware of why this had
been done to me, the times that I cried and felt so alone and unloved, deserted
by those that I trusted, not seeing my mother for what seemed like weeks,
although she visited when she could I still had this sense of loneliness.
For
years I could not spend nights away from home voluntarily it would cause me so
much pain and heartache, and flashbacks to what had been done to me whilst in
hospital.
My
clinic visits were very humiliating as I remember, I would have to strip below
the waste and have doctors poke and prod at me, all done with the consent of my
mother, and what I now see as childhood sex abuse. What this has done to me long
term I will never know, but it certainly made me extremely frightened of the
medical profession, a situation that I am glad to say I have overcome, and I now
work as a nurse specialising in anaesthesia. My own personal trauma has allowed
me to show much more empathy to the patients in my care.
I
cannot remember the exact amount of surgery that I underwent to correct my
Hypospadias but I know that it was enough to keep me out of school long enough
to be behind all the other children of my age, something that has stayed with me
until this day. Who knows what I could have done with my life had I been given
the same amount of education as all the others.
At
the age of 21 I decided that I did not care much for my appearance, and so
insisted on being referred to a surgeon to ask his advice about further surgery.
Unfortunately
there were no surgeons that dealt with
adults with my problem and so I was forced to attend a paediatric hospital. I
first saw a paediatric endocrinologist who did all kinds of tests on me only to
discover that they were not really sure what my problem was. The surgeon to whom
I was referred was closely associated with Johns Hopkins in the US. He had
obviously gleaned some amount of expertise whilst working out there and was so
able to offer me the surgery . This worked quite well and luckily I did not lose
any of the sensation, unlike others that I have heard about recently. Had I
known of the real risks at the time I would not have undergone the surgery,
although it was not as straightforward as I thought and I developed fistulas
that required even more surgery and left me with the problem of strictures that
require repeated urethral dilatations for what will probably be the rest of my
life.
The
greatest joy in my life was when I married in 1982, this was for me the ultimate
compliment, and proved that I could be loved for who I was.
My
wife was fully aware of my condition as I had never held anything back from her
with regard to my problems, well, it would have been impossible to do so under
the circumstances. She helped me to try to come to terms with my problems, and
was the first person who ever got really close to me emotionally. But even then
my insecurity was still there and I knew that I would lose her one day, either
to someone else or because of all my problems.
Everything
was just fine until the day that I was told that she wanted a child. She knew
that I was unable to father a child but talked about insemination from a donor.
This I agreed to after many hours of soul searching and tears, I don’t think
that I fully understood the heartache that it would bring, the nights lying
awake thinking that if only there were some way to father my own child and not
be just a surrogate father. However after many attempts and no pregnancy, we
decided that we would go for the alternative, which was IVF treatment, this
again proved to be very traumatic not only for my wife but much to my amazement
to me also.
I
hadn’t realised just how much all of this was hurting me and making me feel
like a freak, an outsider, a nobody with no part to play in this high tech world
of baby making. We had no support from either of our families, as we decided not
to tell anyone, more for my sake I suppose, but a decision that I will regret
for the rest of my life.
The
clinic that we attended were not at all interested in couples as individuals,
they were more concerned with how many babies they could produce. When I was
originally asked at the start of the artificial insemination treatment, what
exactly my problem was, I do not think that they were fully aware of the extent
of my infertility and the reasons behind it, neither were they interested in
finding out. I was infertile, and that was that. From that day forward they
concentrated solely on my wife and pushed me aside at every opportunity.
The
final insult came when we received a letter from the IVF clinic, giving us a
date for our first appointment, they asked for a sperm sample from me before any
treatment could commence, this was like a huge explosion from deep down in my
soul, it ripped into me with such force that I finally cracked.
I
had not realised just how much all this was affecting me, being intersexual
makes you push thoughts and feelings that may hurt you so deep that you hope you
will never find them again. But this was the final insult to me, realising that
the people who should have been caring and understanding were treating me like I
didn’t really exist. Sure we complained, and got the usual round of apologies,
but no words or pretence at understanding could undo the hurt and anger that I
was now feeling as the direct result of someone’s total lack of empathy.
This
was a turning point in my life as I now saw everyone in a different light, those
feelings of insecurity that I had dreaded as a child came flooding back, I would
have nightmares about the surgery that I had undergone, I would wake in a state
of anxiety and total fear, not knowing why I was afraid. Deep down I was more
afraid that I would not be able to support my wife through all of this, I knew
that she wanted a baby more than anything else. I even asked if she wanted a
divorce so that she could find someone to give her a child, what I would have
done if she had taken me up on the offer I don’t know?
My
world had fallen apart and I had nobody to talk to, I know that Sue was there
for me, but I thought that all she cared about was having a child regardless of
how I felt, I couldn’t bring myself to talk to her as I knew that she had
enough to cope with without me causing her more anxiety. For me it was just like
being a child again, having to deal with the pain and loneliness that I had
suffered through my childhood. I thought I could cope with all this on my own,
as I always had done, but I couldn’t have been more wrong. The pain that I was
now suffering was destroying my very being, tearing through me with such force
that I never thought that I would get through, the times that I contemplated
suicide were so many and so often, that it became an everyday occurrence, I
would wake in a morning and think to myself, is this the day that I won’t be
able to stop myself from ending it all, and putting the final chapter to my hurt
and loneliness.
I
finally relented and gave in to the happy pills, sure they helped but nothing
was going to take away the reasons for why I felt like I did. The pills could
only make me reason a little better, and to make me push my feelings even
deeper, in the hope that I could shut out the thoughts that were causing me so
much pain.
I
never thought I would get through but I did. Just as everything seemed to be
going well again, we recommenced the IVF treatment, with great apprehension on
my part, but I was determined that the people who had caused me to lose control
were not going to win, and that I would support Sue no matter what they threw at
me. How wrong can you be, the worst was yet to come.
On
the day that we went in for egg retrieval the doctor who I must admit I did not
like at all, and who I decided to challenge about his professional attitude,
ripped into me like a whirlwind, not wanting to cause a disturbance I tolerated
his attitude more for the sake of others than for myself.
The
treatment didn’t work and I felt that I had survived round one.
On
the second attempt at treatment some months later, I was to discover a letter
written by the doctor concerned casting aspersions as to the reasons for my
outburst at him on our previous visit, he stated that “It must be difficult
for a man who is infertile to be in amongst fertile men. If I thought that the
other insults to me had raised fears then this was the ultimate, how I
restrained myself from total insanity and the feeling that I wanted to
personally castrate this excuse for a human being, but as always I took others
feelings into account and repressed my own. Everything became sorted in the end,
not to my satisfaction, but we received an apology from the doctor. This however
resulted in us abandoning any further treatment. Prior to us commencing the IVF
treatment we were given the services of a trained counselor. I poured my heart
out to her on several occasions, only to find out that the information that I
had given to her in confidence, had been passed on to the doctor with whom we
had so much trouble. This has made me avoid counselors at all costs.
The
light came on at the end of my tunnel, when my cousin contacted me from the US,
he had the same problems as I did but was unsure exactly what was wrong with me.
We spoke on the phone and all became clear, the family had kept us apart for 40
years, not wanting us to communicate with each other in case we started to ask
awkward questions about the family. I decided to fly to the US in October of
1996 to finally meet the brother I didn’t realise I had.
On
our first meeting was like a huge weight had been lifted from me, I had found
someone at last who cared and understood how I was feeling. This meeting brought
back all sorts of memories, including the times that we had both met whilst
growing up. I would like to think that we have become very close, and that we do
not have any fears of each other. I have great admiration for the way that he
has coped with his life, even surviving the ravages of the wonderful Dr Money.
The
stories that I have been told about the way that this man operated have scared
the hell out of me, and made me think just how lucky I was not to have been in a
position to be treated by him, Although I have had a sample of his so called
expertise, as the surgeon whom I saw in this country was a disciple of his and
almost cost me my male image. My parents had gone to see the surgeon to get his
advice about my future treatment, this was when I was about 22 years old. The
words of my father to me on his return will stay with me forever. He suggested
that my only way to continue my life was if I had a sex change. How can you
change the sex of someone who had the potential to exist as both?
The
words completely destroyed any confidence that I had left in my parents. I had
struggled with the fears that they did what they could for me, and that my
father had never really seen me as a son, but this was the final insult that
made me realise that he had never really believed that I was male. And that he
had tolerated me only for the sake of my mother.
I
have kept in close touch with my cousin, and whenever either of us feels the
need for a shoulder to cry on we always have each other. The sad part of all
this is that we also have an uncle who is now in his 70s with the same problems,
but who has had to go through life without the help and support that we now both
have, it is sad that he will not open up to us despite the fact that he is aware
that we all have the same condition. If we had been born to a life in a
wheelchair or something similar, then we would have been allowed to communicate
with each other, but as we were born with ambiguous genitalia then it was a
taboo subject, something to be ashamed of and not talked about in our presence.
If only we had been put in touch with each other at an earlier stage in our
lives, then we could have found so much support and reassurance between
ourselves.
I
have been through so many difficult stages in my life that it is not always easy
to remember the nice times, just the trauma and heartache that I was forced to
suffer because of the fear that the family had of being discovered. The main
instigator of all this secrecy was my maternal grandmother who had such a hold
on the entire family that the secret remained just that, a terrible secret.
During
my quest for a diagnosis and the truth, I was being treated by an
endocrinologist who suggested that we test the entire family for traces of the
gene, this was to prove extremely difficult as the family were told to never
reveal the truth. Unfortunately my own mother died in 1989, but I know that she
would have been willing to be tested, my only other hope was for my Auntie, the
mother of my cousin who I knew to be affected to be tested. She agreed at first
until my grandmother found out about what I was planning, after that I was not
allowed to speak to my aunt under any circumstances, and so I was avoided by the
entire family, labeled a trouble maker. All I ever wanted was the truth.
My
younger sister who has two children was my next concern as I was unsure of the
carrier status of the condition, however she proved not to be a carrier for the
gene and so there was no chance of either of her children being affected. This
was a great weight lifted from my shoulders, as I felt partly responsible.
I
just wonder how many more relatives I have with the same condition, and how many
of them would welcome a shoulder to cry on, instead of all the secrecy and shame
that the family have placed on our predicament. The stories that I have heard
about the secrecy are really frightening and it makes me wonder that if I was
given more support as I was growing up and had the condition explained to me, or
at least as much as they knew, then maybe I would not be as screwed up as I am
now, and would not have had to go through the living hell of it all. The thing
that screwed me up more than anything else was the fact that every body else was
aware of the condition except for those that were affected, and who it concerned
the most.
I
am still very angry at all concerned for there lies and deception, the
instigator of all this, that person being the grandmother. When I challenged her
about the problem she denied that anything of that nature existed in the family
and also informed me that my mother thought I was nothing but trouble ever since
the day I was born. As you can imagine, those words sank really deep, in fact I
don’t think that I had ever been hurt so deeply, the fact that this was said
following my mothers death, and so could not be queried. I suspect that this was
her own way of getting me to be silent about the whole subject and to detach me
from the family.
How
wrong she was, it just made me more determined to find out the truth. It was by
accident that my cousin contacted me as he was on the same quest and needed
information, the grandmother would turn in her grave if she knew how close we
are, despite the efforts of the family to keep us apart. They remain uneasy when
the two of us are together as I am sure that they feel embarrassed just in case
we start to ask awkward questions, and demand the answers.
I
have at last found the one person in the whole family who can really understand
what it is like to be an intersexual and to have all the problems that go with
the title.
How
much surgery I have had over the years I will never know, I know that I had 15
general anaesthetics one year, that almost finished me off I could not see an
end to the suffering. I still have nightmares about one surgical procedure, that
resulted in me being paralysed on the operating table, but aware of what they
were doing to me, that has stayed with me ever since.
My
countless operations were to play an even bigger part in my life than I expected
as they had begun to affect my work, in as much as I would have to take time
off. At first it was not a problem but as time progressed my employers grew
tired of the situation and eventually I was forced to resign my post due to
increased humiliation and victimisation by my manager. It became common
knowledge within the department that I was having trouble and most were aware of
why I was having time off as the manager made a point of telling people.
I
thought my big break had come when I got a job at a private hospital, and I
could work in my chosen career as an Anaesthetic nurse, but no it was again to
go wrong for me. Again I had to go in for surgery but prior to this I became in
more and more pain plus my marriage was failing rapidly.
I
attempted suicide with paracetamol, and at the time I wish I had succeeded, as
it was a way out of all the suffering I had endured all of my life. It would
also have freed my wife from all the torment of having to cope with me and all
my problems.
I
have at last got the help that I have needed all of my life, but the one person
that I wanted to share this with I have now lost.
I will never get over the fact that I have lost the one person that
really cared about me, and loved me for what I am.
I
was devastated that my marriage had failed, I didn’t know how I would cope
without Sue by my side, but I could understand that she could not take anymore
and needed to be free from me and all my problems.
Since
the disasters in my life unfolded, I have become involved with a very special
group of people at the AIS People Club. There I have found so many new and
wonderful friends, who understand what it is like to have a condition such as
AIS. We all provide so much support for each other, especially at times of
stress and pain.
I
didn't think I would ever be happy again, but through the club I have met a
wonderful woman who also has AIS. The day we first made contact, I knew in my
heart that I had at last found the person who I truly love. She is kind and
understanding with so much love locked up inside her, that I intend letting out
eventually. We have grown so very close in such a short space of time, that my
head is still spinning.
There
are problems with our relationship, as there are in all relationships, but we
will overcome these difficulties together and eventually make the perfect
couple.
She
is teaching me to live again and to overcome the hang-ups I have with my AIS,
which is something I have to do if I am to move on in life.
Without
the support group I would not have found such loyal and loving friends, who
support each other regardless of the problems, but more importantly I would not
have met the woman I love.
I
have reached a point in my life where I feel capable of helping others with AIS
or similar problems. I hope to be able to use some of my experiences, good and
bad, to help others move on in life.
Graham
 | Email me here: GRAHAGUE@aol.com |
|
"The forces that affect our lives, the influences
that mold and shape us, are often like whispers in a distant room, teasingly
indistinct, apprehended only with difficulty"
Charles Dickens.
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