I am hoping to raise funds for young epilepsy, in Cindy's memory, and in Memory of all other young epilepsy sufferers who passed away too soon.
Cindy was born in 1973. In hindsight, her epilepsy started shortly after a very nasty and controversial series of traumatic incidents which happened to her when she was just a toddler. By the time that Cindy was aged 11, her seizures became more pronounced, prolonged and the frequency and severity escalated.
The family GP was a bit rubbish, at first he put her 'fainting' down to puberty, but by the time Cindy was 14, it was beginning to be recognised as Epilepsy, she attended a 'Big' Hospital appointment when she was 15, supposedly for tests, but after she and my Dad drove for miles and miles, then sat around waiting for two hours, they were told that she didn't need the tests, no scan, nothing after all and were sent packing. Cindy was by then on medication which somewhat controlled her seizures, apart from around every month during the Full Moon.
Cindy went on to apply for a driving license, but had to wait until she had been two years free of seizures, with further meds she was able to achieve this, but two years down the line, a seizure meant that her license was suspended for another two years.
She was given another appointment at the 'Big' Hospital, this time she was hoping for some actual answers and some better help with managing her epilepsy, she had researched things, and also had noted peculiarities, e.g. She would have a seizure when water was flowing underneath her feet, a spring, a drain, in the shower, but not in a bath, or when swimming. She also made a diary which proved that her worst seizures did indeed occur during a Full Moon, however as before, the 'Big' Hospital kept her waiting around, no test, no scan , as had been promised, she was sent home yet again, feeling worthless, unworthy and depressed, nowhere to turn, nobody to offload her worries to like a fellow sufferer, or support group.
Cindy worked with young people with Autism, the job was 'her life' her purpose, sadly when a new manager found out that Cindy was epileptic after she'd commented about once being on the same meds as one of her young charges, they sacked her, despite Cindy having been prescribed new medication and being free of Epilepsy for two years.
Cindy tried to find other work, but in a small village it was difficult. She was reluctant to tell anyone that she had epilepsy, so when she had an episode, she'd say that she'd had an asthema attack instead, it was easier for explaining away the tiredness and puffy eyes. She had her first big seizure in a long time, this was not long after losing her job and cutting back her meds on purpose, this meant that she lost her only lifeline-her driving license, so she was stuck in a village, no transport, no job, she moved to the nearby town.
Not long after losing her job working with Young People with Autism, she began researching about other sufferers who had a similar set of circumstances and who had also experienced an onset of epilepsy shortly after suffering after early childhood incidents, traumatic incidents similar to her own. She became depressed, the new family GP, a woman, Cindy confided in her, wanting to know if the 'incidents' could be the cause, but the GP was dismissive and changed the subject, she also stated that it was rubbish, just a myth about the Full Moon, she couldn't have been more blunt.
Cindy began to withold her medication at times, only taking it on the build up to a Full Moon, she carried on with researching epilepsy. In the May, just two months before she died from a massive seizure, showering her legs over the edge of the bath, in the July of 2006. She told a relative that she was going to totally give up her medication, she was ready to die within 3 months of giving the meds up, it would be around the time of a Full Moon, but she believed in being a spirit, so was not afraid to die, to be free at last, no more exhausting fits, no more side effects from her meds, no more looking for answers, she wasn't at all religious, but believed in spiritual things. Her relative didn't understand, they did what they could to offer support, but they were not qualified, they did not really understand anything about Epilepsy , they were not capable of coming to grips with the realities, not until July 2006 during a Blood-Red-Moon that is.
Cindy's parents had to make a very hard decision, allowing Cindy's remains to be used for research into epilepsy .
I have always known that things would have been different if Cindy was given better support, was better informed, was listened to, and if we her family could have been helped to support her better, maybe she would still be here, she was always a great support to me and my children, and was always supportive of others, she wanted to help everyone.
When I was growing up; I was born 12 years before Cindy, when Epilepsy was 'Taboo' , I knew several young people who suffered from Epilepsy, yet such things seemed to be brushed under the carpet, "we don't talk about such things!"
I have met many young sufferers since Cindy passed away and each one has said that often friends runaway, or are frightened and don't know what to do for them, so avoided talking with them about it. Another, a young girl who told me that her Mother called her seizures 'Little Migrains' , and told me that her Mother laid her down in a darkened room on some cushions after she'd had had a seizure, not that she implied that she was having seizures, mostly because she didn't know, about it herself. Her friends, who had witnessed some of her seizures in the Common Room at School, they all told her that she acted strange, and they thought that she was just performing, trying to make them laugh, but it was getting to be silly and boring now. As the girl was telling me about this whilst she sat beside me chatting (I used to be a teaching assistant) she started to go into a seizure, so what she had told me before, it finally made sense, nobody was aware that she had been having Epileptic seizures for all that time, only what her mother had told us 'migraines'. I caught her before she hit the floor and with the help of another T.A. who had a family member who had suffered from Epilepsy, we did what we could to keep the girl safe, observe, look after her and get her urgent medical help. I don't think that I would have been so calm and quick to react had I not already been a little bit Epilepsey aware, I would not have been able to support the girl in the ambulance and at the hospital, I certainly would not have been able to put things clearly to the paramedics and doctors about my observations. I probably would not have caught her, not been aware of what was about to happen, I would not have been able to catch her, gently lowering her to the floor, removing all hazards, preventing her from becoming injured, then timing her seizure, helping her to feel comforted as she regained conciousness, talking to and reassuring her while she was confused, and scared when coming around, I was mostly scared to tell her that me and the other T.A. were used to seeing someone with Epilepsy, we will always be there to keep an eye on her, that she will now get some help, medication to help, and so on, mostly I was scared that I would somehow let it slip that the other T.A. and I were used to having people with epilepsy around us, because both of us lost our relatives to Epilepsy. I'm even reluctant to mention it now, but feel a little bit relieved to know that things are improving and with funding the research into better outcomes, equipment and support can continue.
It might seem that I know all about it , what to do, what to say, how to help and support, but the sad truth is, I don't. My advice to anyone, please, please, please don't give up on your medication, and to our government I plead with them to instate direct funding towards research and emotional support for all Epilepsey Sufferers, educating and enabling us all, making us all Epilepsy Aware, helping young people and their families to live life to the full ...I hope that bit makes sense.
So, to put everyone in the picture, I have been thinking of ways to help fund current Young Epilepsy sufferers and future sufferers, I know that things have moved on somewhat since the 1980s and 1990s, but support and research is charity funded and still has a long way to go in many ways, please keep an eye on my Facebook posts, I will let you know what I am doing, how you can become involved too if you are able please.
If you wish to donate something in the meantime, please do. I can't turn back the clock, but I can set a time. I can no longer turn my back merely because of my own grief, nor can I ignore the fact that I should be doing something to help others right now before it's too late.
I have set quite a low target, but I hope to be able to raise an awful lot more than my target if I possibly can.
Thank you for reading this.
Love from Belinda x