All my life I have felt as if I was living on borrowed time. It was a very strange experience to be born as a ‘Progeria baby that wasn’t. I didn’t look like a progeria baby and hoped that my prior knowledge of myself was just nightmares, and nothing to worry about. I was mostly cared for by my three of my older relatives – two sisters and a brother – all of who were pre junior school age – one was five, one four, and one seven. They changed my nappy, fed me my bottle, clothed me and generally did the things that mothers normally did. It was as illegal then as it is now to have carers under the age of fourteen, and I was very aware of this myself. My other brothers and sisters had commitments but all of them had had the same experience of baby caring, and tried to help when they were available.
My first months involved them exclaiming a lot and calling each other over to witness my skin change, but they soon got used to me. It was a horrific experience for them to watch me suddenly grow very old, when I was about six months old, and I felt very sorry for them. As I could talk quite well at that age – I started talking with a large vocabulary at five months old – I reassured them that I wasn’t a dwarf, and told them about progeria. They had done the best they could for me, with limited resources, and I was very upset that they had been left alone with me. I didn’t like the idea they would be left alone with a .. well, me, not alive., and I got very annoyed with the woman I presumed was my birth mother. My mother – the woman who bought me back from the hospital – was quite bad tempered and easily irritated. I can’t remember much about her but can remember the general atmosphere of the house I was in. It was difficult then – as it is now – to create a family atmosphere – when there is so much crime involving ‘twins’ stealing lives and houses. I was never sure, and nor was my parents, of who any one actually was.. My brothers and sisters – the older ones – took most of my parents time up as they constantly had to check whether they were the same children who were theirs. It was a constant crime– and still is – occurring for children to be replaced with tramp kids, who would then steal keys, money, food, clothing and anything else in the house. My father suspected my mother was a tramp that had been let in, and she thought the same about him. As all the children and the adults looked about the same as my relatives it was difficult to tell them apart.
These suspicions had been proved true in other households and most crimes were committed by the burglars/ trespassers. My biggest fear at this time was wild dogs and spring traps aimed at blinding animals and people – the spring traps were tiny and. put into bushes by cannibals Those that had stolen those houses dumped the legal tenants dogs, or they escaped, miles from the houses they had lived in and they had started to roam in packs, pooing everywhere and starving to death. They were trapped for food, as was the cats, birds, tortoises , pet rabbits and other small animals. The amount of shops were the same as they were now, food was much cheaper and unemployment benefit was the same as it is now so there was no reason for the desperate killings that the criminals did. I thought, back then and now, that it was to provide a false conclusion to the police why people were presuming the inhabitants were murderers.
My premature and rapid aging was another worrying distraction for everyone. The doctors were over crowded and burgled often, as were the pharmacy and hospitals. My local doctor had already visited me often as my first months were full of obscure symptoms – my breasts had grown one month, then had shrunk to normality. My head grew and shrunk regularly, and imitated / was the symptoms of meningitis. My mouth tripled in size then shrunk. One weekend I looked as if I had beri-beri, another as if I had scarlet fever. I was ashamed to be a nuisance, but obviously could not do anything about it. My local doctor recommended an emergency doctor to see me all the time, and my mother was given a name to ask for when I was ill. Also the local ambulances – busy most of the time – were asked to park in my street when they had tea breaks, in case they were needed to assist. I had already woken once or twice to find an ambulance man standing next to me, or an oxygen mask by my side.
The premature aging was severe and I didn’t expect to survive. I slept through most of it, and was surprised to wake up, but especially surprised to find that my sister had been replaced by a twin of herself – her eyes were a different shape. It took me a second or two to remember that all my family had the same ability to change their looks as quickly as I did – that was another thing my muscles could do, but as it wasn’t life threatening I hadn’t took much notice of it . The sight of my changed sister sent me back to sleep. It wasn’t until I was a bit older that I was told that my family had actually left me with a child who had constantly broken into the house, in the hope that it would deter her from entering their home again. My brothers and sisters were asked to care for me in case the tramp burglars that were adults were cannibals or child abusers. I had more chance of survival with children that were nearly the same age as myself. They were fully aware that the child who had entered the house illegally had been constantly bullied into committing the crimes, and were sympathetic, but this didn't mean they enjoyed their stuff being ransacked and stolen.
Luckily I survived the aging, but then I had the weirdest experience of my young life, which was as if my head had started to turn into bone, from the inside. It was the worse feeling of my life, and left me a little bit stupid. This was when I was nearly seven months old.
This age was a very important time in my life. I became aware that one of the women who said she was my mother was trying to sell my brothers and sisters as meat. A few couples appeared and disappeared in the house – all around the same age and looks, and all threatening the children – before two reasonable men appeared, at different times. I asked them both to take me to the police station, to make a complaint about the people claiming to be my parents and about the spring traps left in the hedge next door to my house. The spring traps had already injured my older brother, leaving a deep scratch on his cheek. Also there were unknown, large pelvic like bones and leg bones left in a neighbouring street. They were in rubbish bags and had upset one of the women that had claimed to be my mother. The street had a butchers, but the butcher never dumped carcasses in the bins, but followed the laws that governed his shop.
The police – overworked and stunned by the sudden rise of crime that had occurred in the 1960’s, were amazed by my vocabulary and apparent age. They didn’t seem to take my complaint seriously, and I didn’t expect anything to be done, as worse crimes were happening all over the country too, but within a few months the house was suddenly calm. None of the ‘parents’ were left alone with the children, the house wasn’t allowed visitors when the children were in and a CCTV was installed outside to make sure the rules were kept. The police became regular visitors ; they kept to the outside of the house, and everything they said was recorded by the CCTV.
I recovered slowly from my bone head, and spent a lot of time outside, playing in the garden. My mother, a heavy smoker, sent me to the local shops every morning for cigarettes . It is hard to believe that I was only eight months old, but the shops were only a hundred or so yards away. The local neighbourhood watch kept an eye on me, and voice / action activated cameras were in operation. What my mother did – sending me to the shops for her – was illegal and she would have been arrested if the world was as calm as it is now.
At eight months old I suffered a severe cold with snot that made my nose bleed. It actually clings to the side of my nostril and falls away, leaving a raw patch. I also developed a large bubble like shape on the side of my waist. This wasn’t down to early walking, as everyone presumed. The very early walking didn’t help, but I was still young enough to remember being in the womb, and remembering what happened next to my physiology. I didn’t have progeria, but was changing to fit my age. I was eight months old, and was changing into a ‘8’ shape. Seven months old was going to heaven, and six months old was me being ‘sick’. I knew such a disease was unknown, and silly so didn’t think I was interpreting myself correctly. Five months old appeared as breasts – the number five upside down. I can only imagine that I thought I was upside down in the womb. The doctor was called again, and I explained my fear to him. He said he would try to find someone to confirm this, or to explain what was wrong with me as he didn’t know. My skin – myself – made ‘doctor,doctor’ jokes at him when he appeared, and he asked my permission to document my condition online, and I agreed. He had been filming me since birth, every time he visited, so he could keep a record of my illnesses, and when he watched the films he noticed that my skin seemed to be communicating all sorts of things, mostly explanatory, amusing or cries for help. There were lots of cloud images.
I spent most of my first year talking to adults in the garden, when they had finished talking to my mother, turning away pimps and tramps at the gate, or talking to the local police on the doorstep. Sometimes I was hysterical – I was the only baby in the whole town with a terry towelling nappy – everyone else was wearing disposable – and I wasn’t allowed water, SMA milk or any other comfort a baby should have. I was given mostly cow's milk, and my sma milk was given / stolen by tramps. My child benefit book had been nicked, no-one knew which adults were my parents, and some of the parents claiming to be them were quite aggressive. Most of the time I was intelligent and reasonable though and the local police asked whether I would like to volunteer as a police woman. Everyone, including me, still thought I wouldn’t last a year, and they were trying to let me experience something useful before I died. This kind service was normal for Progeria children - for the mothers who were prone to give birth to similar children, it made the developing embryo think that the previous child had lasted to adulthood, and beyond, and helped extend their life span. I agreed, and I gave impromptu anti-child abuse speeches and promoted being a vegan while escorted by a policeman.
The lump on my side disappeared, and I was nine months old – this was dead line. I couldn’t do anything to control how my body interpreted numbers, actions, and the sky. I could add to what was there, but couldn’t stop the bone head feeling again. I was experiencing pins and needles regularly, and my limbs falling asleep. Whether this was due to shock – of my illness, of the amount of crimes in the neighbourhood, or my physical mistreatment, I don’t know. I was nearly starving – in the medieval past this was thought to stop most meningitis or foot- in- mouth diseases from developing. My antibiotics and creams – left by the doctor – were regularly stolen by people who couldn’t read, to be given as 'overdoses' to other households tenants. I asked the doctor to not give me pain killers or any strong medicine in the future so I wouldn't be contributing to other people’s murders.
The illnesses continued through the ninth month of my life – the number was also a birth time, and my body tried to give birth to itself. I concentrated on having a sence of humour, to stop the humerus growing from my nose – a foot in mouth symptom.
My tenth month become ‘then’ or ‘when’, and is the number I hypnotised myself with to stop me feeling pain. Every number is contained between 0-9 so everything I experienced to do with numbers was already contained in the previous symptoms. The reason I think I am ill with every number is because of the’=’ sign, that spelt ‘ill’ to my genetics. My body counts with pictograms to avoid illnesses so, for example, I have a large ‘leaf’ icon on my leg, occasionally, that represents a lot of leafs that I have seen. Faces are represented by cloud images, as clouds share similar features and are enormous. One cloud face icon on my skin can represent thousands of people that I have actually seen.
When I lasted the first year of my life, I was really glad. Everyone noticed though, quicker than I did, that I became a little bit like everything I touched as well. At the beginning of my second year I realised that I was ill again with the same illnesses. I was scared my immune system wouldn’t be able to cope with another bout of illness, and was nearly shocked to death again. The self hypnosis was helping, and as soon as I thought of my old –age – expected again at eighteen months – I planned my next life-extending pretend career for the children with suspected progeria. The problem that expectant mother-to-be might have with my volunteer policewoman time is that they might not feel that legal themselves, so the child they were expecting might not identify with a policemen image. Children, in the 1960’s , chucked out of their home by identical but criminal parents, had no choice in where they obtained their food, and most legal kids turned to stealing cheap or reduced food from supermarkets so they could live. Even though ‘childrens’ homes were advocated, most of them were being investigated, so were not popular. Squats were sometimes frequented by cannibals and other murderers, so were also no-go areas.
I decided to pretend I was a litter picker for a little while, before I developed breasts again, so others could identify with me. Too much physical work is bad for the baby, so I pretended to resign before they developed again. I already needed a headband for my head muscles, which were developing layers of unusual fat, so pretended I was ‘overworked’. The local litter-pickers joined in with my silliness, and also became part of the neighbourhood watch. The rubbish bags with the bones in also worried them and they made sure that the police also noted their concern. A cctv camera was installed to record the night time intruders.
I also decided, during my second year, to become a pretend politician, and visited London a couple of times, I gave impromptu speeches and performed impromptu comedy acts as I walked along, knowing that I was ninety percent safe because of cctv observance, because we did not enter any private or illegal buildings and because it was daylight. My ‘dad’ – I call him my dad as he was congenial, non –violent, non-abusive verbal man, who was tall and well built – ( less likely to be stalked or replaced by someone wanting access to children ) was amused by my verbal communication, and recorded me with his mobile as well. On one visit , on the way home, I decided that I was also a tourist guide and advocated use of the trains, and I also decided I was a vegan cook in a vegan café, advocating health and safety. There was also a tape of me being a labourer for the male embryos.
All the tapes were for fun – a bit of light entertainment to combat the financial depressions – and to stop progeria taking hold of anyone. We also visited the BBC studios, and I stood in the middle of the stage set, doing impressions of famous people by showing caricatures on my skin. I also decided to be a volunteer with them, this time as the BBC director. The BBC director, at the time, was thought to be on ‘the run’ so I didn’t think he / she would mind. The BBC studios had already given advance warning of its broadcasting end – due to finish in the late 1970’s- early 80’s –and they hadn’t made any ‘live’ broadcasts for a while. Live broadcastings were mostly news flashes and weather warnings. Most people aren't sure whether the broadcasts were actually live, or whether they were video clips that broadcast automatically when atmospheric and environmental changes triggered them. Various groups of people - public minded and criminals - tried to find a broadcasting centre and the presenters involved in the emergency broadcasting, but couldn't find any.
The BBC director image suited my light sensitivity and reaction to my environment – dark glasses and total skin covering was a starlets look in the fifties. I had a great time, and felt privileged to be allowed into the studios while it was closed to the public.
I was also shown where the channel 4 Big Brother was supposedly filmed. As far as I know it has always been shut, even back then. Various event organisers have used the site to re create the vintage stage set and atmosphere, over the years, and a warning was given out about dud audience tickets and invites.
When I was at home, playing in the garden, I pretended to be a religious theologian, a teacher, a singer, a drummer, a guitarist, a punk, a heavy metal dancer, a gardener, a customer service assistant, a nurse, a model, a mother, a porn star and David Attenborough. By the time my advanced old age appeared, in my second year, I had covered most careers that had been in the paper.
I am not sure if it was all taped. The neighbour hood watch, the CCTV, the local police, litter pickers and members of the public all had bits and pieces.
I survived another year, a bit weaker but thinking life was great. My little brother was born, and I changed his nappy and fed him. He was quick to talk, and had a great sense of humour too. Even though he was my blood-brother, he didn’t suffer any of my symptoms, but nor did my other brothers and sisters. Even though he talked, climbed trees with me, played sports games and learned to read, all at a very young age, he never developed age lines or lines around his mouth like I did.
I was visited by suspected progeria patients, over the years, who had heard of me, or seen tapes of me. I hope they lived past the teenage stage, and went on to live a full life. I still have the symptoms but am now 47 years old. The year ( 2014) was an important year for me. I remember trying to convince myself that progeria people live past fourteen, and that the internet pages that appear on the internet that are concerned with progeria meant 2014 rather than 14 years old. I have lived through that too, so I am quite lucky. For those of you that unaware, the internet has a set of web pages that never change. They are presumably on the internet as examples on how to use the internet and are a mixture of truths, lies, examples of internet scams that don’t work, and various uses for the same sort of program. These web pages have been constantly part of the internet, even when my oldest ‘parents’ were children, which dates them to over a hundred years old. They were not wealthy people and the internet wasn’t exclusive, even back then. I still have to remember that there are still countries that don’t have internet service, due to their region’s atmosphere, and for them the computer age is still a new and expensive commodity, so I have included my parents wealth and age to let them know that it is not new here, or expensive, as well as wondering if the age of the web contributed to my genetic pattern.
Anyway, these few pages are on here for people interested in progeria and my experience of it.
All of the community projects stemmed from people I spoke to back then. I become a volunteer police woman again, at 13. This was so the progeria kids could try and turn back time to the last time I was a volunteer- I actually stopped being a volunteer at five years old, previously. I didn't wear a uniform .Not wearing a uniform was another step in helping progeria people identify with me. As a volunteer I was involved in some very unrealistic situations, including a siege but it was a shock when volatile situations began to happen again. Most disturbing for me personally is when one of the spring traps hit me in the eye, leaving both my eyes to bleed. It had been left at my head height - eye height- so I presume I had been watched for that one. That incident left me with amnesia, and I have only just recalled the incident in the last year or so. During my school years I, along with others, were often targeted by nutters - mostly female, or dressed in female clothing,- so I wasn't concentrating on where I was walking that particular evening. I didn't feel I was being victimized but when I recall the situation I was in I guess the cannibals and the bullies were the same family. So many people had walked past hedges, in the past, and had been attacked with the same thing that I would have remembered if I hadn't been so worried about other situations. One incident I recall is that I was also threatened by a mad woman, ( or man) in the school showers, with a pair of scissors. ( I had very long hair. ) She didn't cut it, but her height and age left me frightened. I am also writing this bit for children who are bullied - most people are, so look round and remember that. Others are frightened and scared of the same people. I found that ignoring bullies and concentrating on school work normally helped - bullies are notorious for being thick and can't replace you if you are doing your school work / homework. Teachers who bully are annoying but reading and understanding your school book will help - most of them are asked to leave because they don't understand them. Try not to make too much eye contact with bullies, and remember most of them are not your school friends but people who have come into the school claiming to be them. When I didn't go to school for a day - after my school uniform, shoes, and school bag was stolen, a non-identical tramp appeared in my place, claiming to be me, and a group of tramps tried to break in to my mum and dads tenancy at the same time. My home work was stolen often, and so was my school work. I hand writ my school work to make it difficult for stalkers, so they had to copy it out by hand if they replaced me. The school, again, had ctv surveillance so the thieves got caught. After the incident with my eyes I carried on being a volunteer, this time as a dud 'victim' and as a 'star substitute'. My favorite part of these experiences was being taken for a fast ride down a closed motorway in a private coach and in a private car. I guess I was part of the 'security'. I also was dud Lady of Lytton House, and had an amusing moment when the 'paparazzi' mistook me for her. I don't even know if she exists, but having twenty cameras aimed at me and being asked about the future of Knebworth festivals is quite unnerving. I was ushered into a car, waiting in a side lane, but resisted the urge to get in. Not getting into strangers cars was part of an anti abuse campaign that a few people did with me, and luckily I remembered not to. I don't think the people who were driving the car was remotely connected to Knebworth House.
The public were always involved in the volunteer community projects. No one was paid and the volunteer actors wanted to highlight that they were not the moving photographs on the tv. They were not wealthy, not super stars and mostly didn't live in Hollywood mansions. They were also stopping the cannibals who tried to persuade relatives and friends of the missing that their missing were employed in the acting profession. Most of the projects were to make people aware that the newspapers were fiction - most of the public medias are fictional stories about the cloud forms above, the temperature, the wind speed and coastal tides - and the stories are made up as weather warnings and to make people remember the weather. While the weather is calm in central England there may be hurricane conditions in other parts of the island and that is easy to forget. The projects were also there to help public morale, stop other crimes and to let others know that the stories are repetitive. The TV , internet, and newspapers are in a loop, and some people plan their crimes around this fact. Be aware of your name in connection with the newspaper reports. Trying to make the fiction in the newspaper true doesn't make the criminal into a newspaper reporter. Hurting someone to fit into a fictional newspaper report doesn't mean that the story on the next page will also become true - like a lottery win or instant stardom and popularity. The newspapers, internet and TV are all examples of how to use the different public machines and any billionaire can apply for a license to publish, produce and broadcast anything new in any of the public medias ( a broadcasting license for broadcasting to the whole country.). The military have guidelines to what is deemed as fit for public viewing, and unbiased incorrect reporting can lead to volatile situations, so licences are not granted that often. Unfortunately some of the medias in the past have been used to encourage dissatisfaction towards sectors of the community , in what was called ' personal vendettas for personal gain' so the guidelines haven't been met for a while. Freedom of speech is encouraged by the examples of the media that I have mentioned and utube, blogs and webpages are not illegal
My first months involved them exclaiming a lot and calling each other over to witness my skin change, but they soon got used to me. It was a horrific experience for them to watch me suddenly grow very old, when I was about six months old, and I felt very sorry for them. As I could talk quite well at that age – I started talking with a large vocabulary at five months old – I reassured them that I wasn’t a dwarf, and told them about progeria. They had done the best they could for me, with limited resources, and I was very upset that they had been left alone with me. I didn’t like the idea they would be left alone with a .. well, me, not alive., and I got very annoyed with the woman I presumed was my birth mother. My mother – the woman who bought me back from the hospital – was quite bad tempered and easily irritated. I can’t remember much about her but can remember the general atmosphere of the house I was in. It was difficult then – as it is now – to create a family atmosphere – when there is so much crime involving ‘twins’ stealing lives and houses. I was never sure, and nor was my parents, of who any one actually was.. My brothers and sisters – the older ones – took most of my parents time up as they constantly had to check whether they were the same children who were theirs. It was a constant crime– and still is – occurring for children to be replaced with tramp kids, who would then steal keys, money, food, clothing and anything else in the house. My father suspected my mother was a tramp that had been let in, and she thought the same about him. As all the children and the adults looked about the same as my relatives it was difficult to tell them apart.
These suspicions had been proved true in other households and most crimes were committed by the burglars/ trespassers. My biggest fear at this time was wild dogs and spring traps aimed at blinding animals and people – the spring traps were tiny and. put into bushes by cannibals Those that had stolen those houses dumped the legal tenants dogs, or they escaped, miles from the houses they had lived in and they had started to roam in packs, pooing everywhere and starving to death. They were trapped for food, as was the cats, birds, tortoises , pet rabbits and other small animals. The amount of shops were the same as they were now, food was much cheaper and unemployment benefit was the same as it is now so there was no reason for the desperate killings that the criminals did. I thought, back then and now, that it was to provide a false conclusion to the police why people were presuming the inhabitants were murderers.
My premature and rapid aging was another worrying distraction for everyone. The doctors were over crowded and burgled often, as were the pharmacy and hospitals. My local doctor had already visited me often as my first months were full of obscure symptoms – my breasts had grown one month, then had shrunk to normality. My head grew and shrunk regularly, and imitated / was the symptoms of meningitis. My mouth tripled in size then shrunk. One weekend I looked as if I had beri-beri, another as if I had scarlet fever. I was ashamed to be a nuisance, but obviously could not do anything about it. My local doctor recommended an emergency doctor to see me all the time, and my mother was given a name to ask for when I was ill. Also the local ambulances – busy most of the time – were asked to park in my street when they had tea breaks, in case they were needed to assist. I had already woken once or twice to find an ambulance man standing next to me, or an oxygen mask by my side.
The premature aging was severe and I didn’t expect to survive. I slept through most of it, and was surprised to wake up, but especially surprised to find that my sister had been replaced by a twin of herself – her eyes were a different shape. It took me a second or two to remember that all my family had the same ability to change their looks as quickly as I did – that was another thing my muscles could do, but as it wasn’t life threatening I hadn’t took much notice of it . The sight of my changed sister sent me back to sleep. It wasn’t until I was a bit older that I was told that my family had actually left me with a child who had constantly broken into the house, in the hope that it would deter her from entering their home again. My brothers and sisters were asked to care for me in case the tramp burglars that were adults were cannibals or child abusers. I had more chance of survival with children that were nearly the same age as myself. They were fully aware that the child who had entered the house illegally had been constantly bullied into committing the crimes, and were sympathetic, but this didn't mean they enjoyed their stuff being ransacked and stolen.
Luckily I survived the aging, but then I had the weirdest experience of my young life, which was as if my head had started to turn into bone, from the inside. It was the worse feeling of my life, and left me a little bit stupid. This was when I was nearly seven months old.
This age was a very important time in my life. I became aware that one of the women who said she was my mother was trying to sell my brothers and sisters as meat. A few couples appeared and disappeared in the house – all around the same age and looks, and all threatening the children – before two reasonable men appeared, at different times. I asked them both to take me to the police station, to make a complaint about the people claiming to be my parents and about the spring traps left in the hedge next door to my house. The spring traps had already injured my older brother, leaving a deep scratch on his cheek. Also there were unknown, large pelvic like bones and leg bones left in a neighbouring street. They were in rubbish bags and had upset one of the women that had claimed to be my mother. The street had a butchers, but the butcher never dumped carcasses in the bins, but followed the laws that governed his shop.
The police – overworked and stunned by the sudden rise of crime that had occurred in the 1960’s, were amazed by my vocabulary and apparent age. They didn’t seem to take my complaint seriously, and I didn’t expect anything to be done, as worse crimes were happening all over the country too, but within a few months the house was suddenly calm. None of the ‘parents’ were left alone with the children, the house wasn’t allowed visitors when the children were in and a CCTV was installed outside to make sure the rules were kept. The police became regular visitors ; they kept to the outside of the house, and everything they said was recorded by the CCTV.
I recovered slowly from my bone head, and spent a lot of time outside, playing in the garden. My mother, a heavy smoker, sent me to the local shops every morning for cigarettes . It is hard to believe that I was only eight months old, but the shops were only a hundred or so yards away. The local neighbourhood watch kept an eye on me, and voice / action activated cameras were in operation. What my mother did – sending me to the shops for her – was illegal and she would have been arrested if the world was as calm as it is now.
At eight months old I suffered a severe cold with snot that made my nose bleed. It actually clings to the side of my nostril and falls away, leaving a raw patch. I also developed a large bubble like shape on the side of my waist. This wasn’t down to early walking, as everyone presumed. The very early walking didn’t help, but I was still young enough to remember being in the womb, and remembering what happened next to my physiology. I didn’t have progeria, but was changing to fit my age. I was eight months old, and was changing into a ‘8’ shape. Seven months old was going to heaven, and six months old was me being ‘sick’. I knew such a disease was unknown, and silly so didn’t think I was interpreting myself correctly. Five months old appeared as breasts – the number five upside down. I can only imagine that I thought I was upside down in the womb. The doctor was called again, and I explained my fear to him. He said he would try to find someone to confirm this, or to explain what was wrong with me as he didn’t know. My skin – myself – made ‘doctor,doctor’ jokes at him when he appeared, and he asked my permission to document my condition online, and I agreed. He had been filming me since birth, every time he visited, so he could keep a record of my illnesses, and when he watched the films he noticed that my skin seemed to be communicating all sorts of things, mostly explanatory, amusing or cries for help. There were lots of cloud images.
I spent most of my first year talking to adults in the garden, when they had finished talking to my mother, turning away pimps and tramps at the gate, or talking to the local police on the doorstep. Sometimes I was hysterical – I was the only baby in the whole town with a terry towelling nappy – everyone else was wearing disposable – and I wasn’t allowed water, SMA milk or any other comfort a baby should have. I was given mostly cow's milk, and my sma milk was given / stolen by tramps. My child benefit book had been nicked, no-one knew which adults were my parents, and some of the parents claiming to be them were quite aggressive. Most of the time I was intelligent and reasonable though and the local police asked whether I would like to volunteer as a police woman. Everyone, including me, still thought I wouldn’t last a year, and they were trying to let me experience something useful before I died. This kind service was normal for Progeria children - for the mothers who were prone to give birth to similar children, it made the developing embryo think that the previous child had lasted to adulthood, and beyond, and helped extend their life span. I agreed, and I gave impromptu anti-child abuse speeches and promoted being a vegan while escorted by a policeman.
The lump on my side disappeared, and I was nine months old – this was dead line. I couldn’t do anything to control how my body interpreted numbers, actions, and the sky. I could add to what was there, but couldn’t stop the bone head feeling again. I was experiencing pins and needles regularly, and my limbs falling asleep. Whether this was due to shock – of my illness, of the amount of crimes in the neighbourhood, or my physical mistreatment, I don’t know. I was nearly starving – in the medieval past this was thought to stop most meningitis or foot- in- mouth diseases from developing. My antibiotics and creams – left by the doctor – were regularly stolen by people who couldn’t read, to be given as 'overdoses' to other households tenants. I asked the doctor to not give me pain killers or any strong medicine in the future so I wouldn't be contributing to other people’s murders.
The illnesses continued through the ninth month of my life – the number was also a birth time, and my body tried to give birth to itself. I concentrated on having a sence of humour, to stop the humerus growing from my nose – a foot in mouth symptom.
My tenth month become ‘then’ or ‘when’, and is the number I hypnotised myself with to stop me feeling pain. Every number is contained between 0-9 so everything I experienced to do with numbers was already contained in the previous symptoms. The reason I think I am ill with every number is because of the’=’ sign, that spelt ‘ill’ to my genetics. My body counts with pictograms to avoid illnesses so, for example, I have a large ‘leaf’ icon on my leg, occasionally, that represents a lot of leafs that I have seen. Faces are represented by cloud images, as clouds share similar features and are enormous. One cloud face icon on my skin can represent thousands of people that I have actually seen.
When I lasted the first year of my life, I was really glad. Everyone noticed though, quicker than I did, that I became a little bit like everything I touched as well. At the beginning of my second year I realised that I was ill again with the same illnesses. I was scared my immune system wouldn’t be able to cope with another bout of illness, and was nearly shocked to death again. The self hypnosis was helping, and as soon as I thought of my old –age – expected again at eighteen months – I planned my next life-extending pretend career for the children with suspected progeria. The problem that expectant mother-to-be might have with my volunteer policewoman time is that they might not feel that legal themselves, so the child they were expecting might not identify with a policemen image. Children, in the 1960’s , chucked out of their home by identical but criminal parents, had no choice in where they obtained their food, and most legal kids turned to stealing cheap or reduced food from supermarkets so they could live. Even though ‘childrens’ homes were advocated, most of them were being investigated, so were not popular. Squats were sometimes frequented by cannibals and other murderers, so were also no-go areas.
I decided to pretend I was a litter picker for a little while, before I developed breasts again, so others could identify with me. Too much physical work is bad for the baby, so I pretended to resign before they developed again. I already needed a headband for my head muscles, which were developing layers of unusual fat, so pretended I was ‘overworked’. The local litter-pickers joined in with my silliness, and also became part of the neighbourhood watch. The rubbish bags with the bones in also worried them and they made sure that the police also noted their concern. A cctv camera was installed to record the night time intruders.
I also decided, during my second year, to become a pretend politician, and visited London a couple of times, I gave impromptu speeches and performed impromptu comedy acts as I walked along, knowing that I was ninety percent safe because of cctv observance, because we did not enter any private or illegal buildings and because it was daylight. My ‘dad’ – I call him my dad as he was congenial, non –violent, non-abusive verbal man, who was tall and well built – ( less likely to be stalked or replaced by someone wanting access to children ) was amused by my verbal communication, and recorded me with his mobile as well. On one visit , on the way home, I decided that I was also a tourist guide and advocated use of the trains, and I also decided I was a vegan cook in a vegan café, advocating health and safety. There was also a tape of me being a labourer for the male embryos.
All the tapes were for fun – a bit of light entertainment to combat the financial depressions – and to stop progeria taking hold of anyone. We also visited the BBC studios, and I stood in the middle of the stage set, doing impressions of famous people by showing caricatures on my skin. I also decided to be a volunteer with them, this time as the BBC director. The BBC director, at the time, was thought to be on ‘the run’ so I didn’t think he / she would mind. The BBC studios had already given advance warning of its broadcasting end – due to finish in the late 1970’s- early 80’s –and they hadn’t made any ‘live’ broadcasts for a while. Live broadcastings were mostly news flashes and weather warnings. Most people aren't sure whether the broadcasts were actually live, or whether they were video clips that broadcast automatically when atmospheric and environmental changes triggered them. Various groups of people - public minded and criminals - tried to find a broadcasting centre and the presenters involved in the emergency broadcasting, but couldn't find any.
The BBC director image suited my light sensitivity and reaction to my environment – dark glasses and total skin covering was a starlets look in the fifties. I had a great time, and felt privileged to be allowed into the studios while it was closed to the public.
I was also shown where the channel 4 Big Brother was supposedly filmed. As far as I know it has always been shut, even back then. Various event organisers have used the site to re create the vintage stage set and atmosphere, over the years, and a warning was given out about dud audience tickets and invites.
When I was at home, playing in the garden, I pretended to be a religious theologian, a teacher, a singer, a drummer, a guitarist, a punk, a heavy metal dancer, a gardener, a customer service assistant, a nurse, a model, a mother, a porn star and David Attenborough. By the time my advanced old age appeared, in my second year, I had covered most careers that had been in the paper.
I am not sure if it was all taped. The neighbour hood watch, the CCTV, the local police, litter pickers and members of the public all had bits and pieces.
I survived another year, a bit weaker but thinking life was great. My little brother was born, and I changed his nappy and fed him. He was quick to talk, and had a great sense of humour too. Even though he was my blood-brother, he didn’t suffer any of my symptoms, but nor did my other brothers and sisters. Even though he talked, climbed trees with me, played sports games and learned to read, all at a very young age, he never developed age lines or lines around his mouth like I did.
I was visited by suspected progeria patients, over the years, who had heard of me, or seen tapes of me. I hope they lived past the teenage stage, and went on to live a full life. I still have the symptoms but am now 47 years old. The year ( 2014) was an important year for me. I remember trying to convince myself that progeria people live past fourteen, and that the internet pages that appear on the internet that are concerned with progeria meant 2014 rather than 14 years old. I have lived through that too, so I am quite lucky. For those of you that unaware, the internet has a set of web pages that never change. They are presumably on the internet as examples on how to use the internet and are a mixture of truths, lies, examples of internet scams that don’t work, and various uses for the same sort of program. These web pages have been constantly part of the internet, even when my oldest ‘parents’ were children, which dates them to over a hundred years old. They were not wealthy people and the internet wasn’t exclusive, even back then. I still have to remember that there are still countries that don’t have internet service, due to their region’s atmosphere, and for them the computer age is still a new and expensive commodity, so I have included my parents wealth and age to let them know that it is not new here, or expensive, as well as wondering if the age of the web contributed to my genetic pattern.
Anyway, these few pages are on here for people interested in progeria and my experience of it.
All of the community projects stemmed from people I spoke to back then. I become a volunteer police woman again, at 13. This was so the progeria kids could try and turn back time to the last time I was a volunteer- I actually stopped being a volunteer at five years old, previously. I didn't wear a uniform .Not wearing a uniform was another step in helping progeria people identify with me. As a volunteer I was involved in some very unrealistic situations, including a siege but it was a shock when volatile situations began to happen again. Most disturbing for me personally is when one of the spring traps hit me in the eye, leaving both my eyes to bleed. It had been left at my head height - eye height- so I presume I had been watched for that one. That incident left me with amnesia, and I have only just recalled the incident in the last year or so. During my school years I, along with others, were often targeted by nutters - mostly female, or dressed in female clothing,- so I wasn't concentrating on where I was walking that particular evening. I didn't feel I was being victimized but when I recall the situation I was in I guess the cannibals and the bullies were the same family. So many people had walked past hedges, in the past, and had been attacked with the same thing that I would have remembered if I hadn't been so worried about other situations. One incident I recall is that I was also threatened by a mad woman, ( or man) in the school showers, with a pair of scissors. ( I had very long hair. ) She didn't cut it, but her height and age left me frightened. I am also writing this bit for children who are bullied - most people are, so look round and remember that. Others are frightened and scared of the same people. I found that ignoring bullies and concentrating on school work normally helped - bullies are notorious for being thick and can't replace you if you are doing your school work / homework. Teachers who bully are annoying but reading and understanding your school book will help - most of them are asked to leave because they don't understand them. Try not to make too much eye contact with bullies, and remember most of them are not your school friends but people who have come into the school claiming to be them. When I didn't go to school for a day - after my school uniform, shoes, and school bag was stolen, a non-identical tramp appeared in my place, claiming to be me, and a group of tramps tried to break in to my mum and dads tenancy at the same time. My home work was stolen often, and so was my school work. I hand writ my school work to make it difficult for stalkers, so they had to copy it out by hand if they replaced me. The school, again, had ctv surveillance so the thieves got caught. After the incident with my eyes I carried on being a volunteer, this time as a dud 'victim' and as a 'star substitute'. My favorite part of these experiences was being taken for a fast ride down a closed motorway in a private coach and in a private car. I guess I was part of the 'security'. I also was dud Lady of Lytton House, and had an amusing moment when the 'paparazzi' mistook me for her. I don't even know if she exists, but having twenty cameras aimed at me and being asked about the future of Knebworth festivals is quite unnerving. I was ushered into a car, waiting in a side lane, but resisted the urge to get in. Not getting into strangers cars was part of an anti abuse campaign that a few people did with me, and luckily I remembered not to. I don't think the people who were driving the car was remotely connected to Knebworth House.
The public were always involved in the volunteer community projects. No one was paid and the volunteer actors wanted to highlight that they were not the moving photographs on the tv. They were not wealthy, not super stars and mostly didn't live in Hollywood mansions. They were also stopping the cannibals who tried to persuade relatives and friends of the missing that their missing were employed in the acting profession. Most of the projects were to make people aware that the newspapers were fiction - most of the public medias are fictional stories about the cloud forms above, the temperature, the wind speed and coastal tides - and the stories are made up as weather warnings and to make people remember the weather. While the weather is calm in central England there may be hurricane conditions in other parts of the island and that is easy to forget. The projects were also there to help public morale, stop other crimes and to let others know that the stories are repetitive. The TV , internet, and newspapers are in a loop, and some people plan their crimes around this fact. Be aware of your name in connection with the newspaper reports. Trying to make the fiction in the newspaper true doesn't make the criminal into a newspaper reporter. Hurting someone to fit into a fictional newspaper report doesn't mean that the story on the next page will also become true - like a lottery win or instant stardom and popularity. The newspapers, internet and TV are all examples of how to use the different public machines and any billionaire can apply for a license to publish, produce and broadcast anything new in any of the public medias ( a broadcasting license for broadcasting to the whole country.). The military have guidelines to what is deemed as fit for public viewing, and unbiased incorrect reporting can lead to volatile situations, so licences are not granted that often. Unfortunately some of the medias in the past have been used to encourage dissatisfaction towards sectors of the community , in what was called ' personal vendettas for personal gain' so the guidelines haven't been met for a while. Freedom of speech is encouraged by the examples of the media that I have mentioned and utube, blogs and webpages are not illegal