I was born in 1953, the youngest of four. My mother was two months from her 40th birthday. I was born with a CMN covering my neck, my shoulders, and the top half of my back. I also had a large mole on the inside of my thigh and a mole the size of a 2p piece on my leg. Weirdly, this has disappeared in the last twenty years. My mother gave birth to me at home, and I have no knowledge of when I was hospitalised for the first time. During my childhood my mother was reluctant to talk about my CMN or answer my questions regarding it. It was too upsetting for her to talk about. I do remember her saying that she fell climbing over a fence when pregnant and that must have been what caused it. She also said that doctors came from far and wide to view my CMN.
I know for certain that I received treatment at least twice before the age of nine. My consultant was a plastic surgeon noted for treating airmen who had suffered terrible burns during the Second World War and miners injured in colliery explosions. My treatment, I believe (my mother did tell me that my naevus was lumpy), involved the cutting away of tissue to make the skin on my back smoother. This left me with three long scars running down and across my back. I recently saw an online article about a baby in Florida, USA, who was born with a CMN and the treatment he has been undergoing. The pictures of his back at birth and after the initial operations lead me to believe that my CMN was identical.
At the age of nine it was decided to deal with my CMN with an experimental skin graft to cover up an area of it on my right shoulder with skin taken from both my thighs. I recall being in hospital for over two months, six weeks of which I spent in bed with my torso and head covered in plaster of Paris. I was not allowed to move. When the plaster was removed, and I was allowed out of bed I could not walk. I remember being helped by a nurse to walk around a large table in the middle of the ward for few days until I could walk unaided.
It was after that experience that my CMN loomed larger in my life. The skin graft wasn’t a great success. That part of my back has remained unsightly and uncomfortable ever since. It was the last treatment I received. My parents decided that I should not endure any further unnecessary surgery or prolonged hospital stays. Within two years I had moved on to Grammar School and I began to become more self-conscious about my CMN, even though only the area around the back and sides of my neck were visible. I found changing for Games and PE lessons most difficult. I would tuck myself away in a corner to dress and undress and I refrained from entering the communal shower. Whether my parents had informed the school of my CMN I do not know. Someone must have flagged up my CMN because at the age of 15, out of the blue, I received an invitation to attend a local clinic where a doctor questioned me about my back. The only help I was offered was that I should try a tanning product on my body. This, as with my skin graft operation, was an attempt to cover/hide my CMN. I think I was given a prescription for self-tanning cream which I did use but only for a brief period. Fortunately, I was successful at sports and good academically, so I had much to occupy me and sustain me through my school years.
Of course, my teenage years and my time as a young adult at university were emotionally challenging. I refrained from entering relationships with the opposite sex, even though I would have liked to. I recall a few occasions where girls were obviously interested in engaging with me, but I declined to pursue the possibility of developing a relationship. I carried my “burden” alone and discussed it with no-one. Eventually, by the age of twenty-five, I began my first long term relationship. After five years I had another relationship that also lasted five years. I finally met my wife, Nicola, in 1990 and we have been married for twenty-eight years. All three relationships were not, to some extent, initiated by me. I waited for my partner to show they were interested in me and only then did I feel the obligation to reveal my CMN. My wife has always been very supportive of me and most interested in my CMN. She is a naturally caring person and has always said that she would have liked to have been a nurse. She has drawn me out more than anyone else to talk about my CMN and to accept it as part of who I am. And yet it is only recently that I made the point of telling someone else outside of my family (apart from two close friends from schooldays) about my CMN; I told my neighbour who’s become a good friend over the past 5 years. I felt by telling him about my CMN, it would contribute to him understanding why I am like I am; why I hold the beliefs, opinions and my view of life as I do.
Despite the emotional and psychological impact that my CMN has obviously had upon me, particularly from the age of twelve to twenty-five, I know that I have had a fairly happy and successful life. I was good at sport and that was very fulfilling. I was academically successful and, therefore, had a rewarding teaching career. I accomplished things that enhanced my confidence and self-esteem. Hopefully, my CMN has made me more aware of the problems that others endure in life and has made me a more sensitive and sympathetic person. I often think, if only Caring Matters Now had existed when I was growing up; I could have benefitted from the support the charity offers and coped better with the physical, emotional, and psychological effects of living with a CMN – especially when I was a shy teenage boy and a young uncertain adult. Yet, even so, it is still very comforting and rewarding for me now to know that so many children and young adults can turn to the organisation and find the guidance and support that can help them successfully overcome the challenges that they face.
As an adult member, Leo has taken part in some research alongside the Centre for Appearance Research (CAR), if you would be interested in getting involved in research projects in the future, contact info@caringmattersnow.co.uk.
