A tribute to Jill Sheldrake

Below is a talk Jill gave us in 1997, when she joined the committee, at the Family Weekend that year. It was moving to listen to at the time and is even more so now she is no longer with us.

In being able to stand here and communicate with you today I am appreciative of the fact that I am one of the more fortunate sufferers of Sturge Weber syndrome with Klippel Trenaunay syndrome 1 added for good measure! and I am mindful that everyone with this condition is a unique individual with their own set of problems and they are a special person in their own right.

When Jenny asked me to speak today I didn't know where to begin I couldn't imagine how what I have to say would be interesting or useful for you to hear, so if you want to have a swim or Jacuzzi now is the time to do it! !

I've divided my story, and reflections chronologically in the hope of making things clearer and hopefully less boring for you.

I don't know what it is to live a normal life, I wasn't given the option.. When I was born medical science wasn't what it is today, and by their status doctors and members of the medical profession were less approachable. My parents were told some horrific speculations about my condition and whilst I can accept that even less was known about it then I feel angry that they were not afforded some insight of the suspected diagnosis, be it for better or worse.

We, that is my parents and I, spent many hours of my childhood in hospital waiting rooms, during which time I would convince myself that I could see properly, hear better, or that my legs had grown to the same size. I hadn't got round to wishing a medical cure for a large bottom at that age!!

Eventually I would see the consultant and be poked, prodded and asked the same questions as the last time I saw him - and the same questions a different consultant had asked earlier that day, - giving back the same answers to each and receiving the same reply from each, - being told the usual phrase - " Oh it's just you being you!! - No wonder we've got problems" ! ! !

Looking back, there were several officials and experts whose insensitivity added spice to my life with their textbook jargon and firm handshakes, but in fairness I have to say that the medical profession did give me an excellent service. However, I wish they had used a thorough multidisciplinary approach, communicating with each other and given holistic care, treating my psychological problems as well as the physical ones.

Overall I don't perceive my childhood as being any different from that of my peers. It was a happy time and I grew up encouraged to join in with lots of friends, doing the same as they did. My parents were always there to give me extra support with my education and must have been driven, - no, I know they WERE driven to the point of exasperation when I couldn't spell the most simple of words, or get the hang of fractions, - especially as my brother, four years my junior, always had the answers ready, clever little Dick!!!

My adolescent years were not a notably wonderful time, as if coping with the advent of womanhood wasn't enough! Being hampered by facial disfigurement was the worst aspect. For me, looking in a mirror on an emotionally challenging day could be a daunting prospect!! I was teased at school and my parents considered moving me to a private school to avoid this. I am grateful now that they took the attitude that if I could learn to cope with the teasing and associated problems at this stage of my life, then I would have it conquered for the years to come. It would be easy to say that I learnt to cope with the birthmarks, - but it wasn't easy. Mum and I often, would sit on my bed and cry together. But my parents were right and I am glad that they had the courage of their convictions and were there to help me through. I now have a more positive view of my problems and as a result of this I am able to share with you the knowledge that the worst area of my birthmark is on my bottom and looks like a map of Africa. Forgive me for being so basic, but I am relieved that humans greet each other by shaking hands and not the same way dogs do!!!!!

Anyway along came the wonderful world of makeup I tried all sorts of lotions and potions and depending on the shade, level of thickness at which I troweled it on and on how much of a hurry I was in when I put it on - I looked a different nationality each day!!! Things improved with the discovery of medical camouflage makeup. It was more reliable, natural and waterproof. That's what the experts said. When I went swimming it floated off in the water and my face would be two lengths ahead of my body!! When I washed it off at night with soap and water, it only came off on my towel, pillowcase, sheet, duvet and nightee!!!! At least having Sturge Weber has improved my swimming skills, as I swam to catch up with my face.

Human nature being what it is, means that many people judge others within the first few moments of meeting them by their appearance. I often have to bite back the tears knowing that people are looking at me and wondering. Firstly, I am a person, secondly I happen to have Sturge Weber syndrome. The fact that I look different doesn't mean that I have different feelings, emotions, hopes and dreams. It's just that some are out of my control, or should I say, instant control. The majority of my dreams have been attainable and my own, personal motto, - "accept your limitations, then go beyond them" - has helped me in moments of challenge and doubt.

At the age of 29 by VERY legal but devious means, I managed to get an appointment to see a genetisist for counselling. Within ten minutes I was given a diagnosis and what a pleasure it was to be able to tell my mum officially, that it was not her fault. NOT that I had ever blamed her.

Having a child with problems in those days must have been even more traumatic. Support for parents was non existent and of course, some people in our rural society still believed that they must have done something wrong to produce a child like this!!! I have an extra special bond with my parents, especially my mum, ( coincidentally, something a doctor correctly predicted ) and the kind of love I receive from them is not born of guilt, but of wanting me to reach my full potential.

Being a health care professional provided me with a better opportunity to learn about my syndromes, although I still have a lot to learn and have not stopped questioning. Looking back at the medical care I was given, it has been appropriate, which seemed uncanny and clever of those concerned and involved. Within the last couple of months I discovered that I had been diagnosed as having Sturge Weber by the time I was a week old. Why did my family have to wait 29 years to find out?????

As I look to the future, medically I do not know what it holds, especially as the ageing process can be so cruel, but I have come to accept my situation for what it is and have learnt to make the best of a bad job. I cope by looking at my achievements, not my problems and wonder what challenges I can meet next. At 30 I went to university, a bit late I know for drugs and rock `n roll, but I am wondering what I can get up to when life begins at 40?? Answers on a postcard, please.

In future, I feel that I am in a position to act as an ambassador for the sufferers of Sturge Weber who are less able than myself who have to live with their more severe problems, their courage going unsung because they cannot express their fears.

I am blessed with eloquence and intellectual ability to act from a position of strength, unlike so many here this weekend who are so often misunderstood, misinterpreted and undervalued by society.

At the beginning I said I do not know what it is to lead a normal life. My life has been normal to me and having Sturge Weber syndrome has made me do many things I would not otherwise have done, if not only to prove myself to me and to others.

It would be easy to say that I have learnt to live with Sturge Weber syndrome, but it is never easy, nor is it all doom and gloom.

Finally I would like to end by reading a poem which reflects all children and gives food for thought.

Doing things for myself

They come to do my buttons up, I say "no not today",
today I`m doing my buttons up my own way.
I like to do things for myself, I wish they`d understand,
only if I ask them should they lend a hand.
I like to do my buttons up though seldom every one.
I like to do my buttons up by leaving some undone.
I like to get my goodies down, by falling from the shelf.
I like to wash my face and hands and miss the dirt myself.
I like to wet the tablecloth, while filling up my cup.
I want the eggs to fly around while cutting bacon up.
So that`s what I`ve decided, if they button me today,
I`ll have to just unbutton things my own way!!!!!!!!

1. See the Great Ormond Street leaflet