I hesitate to write my story and so it will be anonymous, but I would like to help others and let them know they are not alone.
Families react in different ways when a person has epilepsy, and sometimes they are not supportive, and don’t like or want to help the person you have become.
Epilepsy is known to be genetic, it can therefore be a weakness where stress can take over when life becomes difficult.
Mine began as night time seizures, at the same time my marriage was failing and I was taking a post graduate course to start my career.
My eldest daughter was eighteen years old and started university, my youngest stayed with her father at aged sixteen, very happy with her life, and first boyfriend. There had not been any problems as we all moved on, each child growing up, supported by their working parents with love and care, living with me from time to time before they settled down.
Some years later it got worse, and I couldn’t cope, with a suspended driving licence, my career over, constant seizures. I remember the police banging at the door, threatening to break it down if I wouldn’t open it. I actually couldn’t unlock it and I still don’t know who told them?
Status epilepticus, high temperature, menstrual blood, vomit on the pillows, who told them? My ex-husband and girlfriend cleaned me up and took the duvet to the dry-cleaners. I must ask him how he knew or even got into the house.
My father gave me a button press emergency telephone call service. That was it, he’d done his bit. Anyone tried pressing a button while having a seizure?
My daughters visited occasionally at this time, but offered no help, no shopping, no daily phone calls. My doctor wouldn’t telephone the neurologist even though I had his secretary’s telephone number.
I used to leave the surgery sobbing. I said write to him then, he replied what shall I say? I said my life is in danger, and he said you write it and I’ll send it. I wrote it and he didn’t send it. Even in 2005 the specialist told me I couldn’t see him anymore because he’d been told to cut his list, which is why he’d given me his personal number.
Where were my daughters? Establishing their own lives, going their own ways in the world. I was just there, for these dreadful few years. My eldest daughter seemed to hate me and want to punish me before her wedding, and has done so on and off for years.
I called my second daughter ‘my rock’, as she is very stable, but often away, and mobile phones had only just arrived so there were only occasional calls.
I have described my worst years, I knew every hospital in the area, friends helped, but there was no family support. I’ve always had fun with my children and grandchildren, but epilepsy has never been a subject to discuss. I don’t think I wanted them to know how bad it was and they didn’t want to acknowledge it.
Fortunately, despite the lack of support, I just got on with things. Life and death were immaterial or indistinguishable. It got better when I was made redundant through ill-health and got Disablement Benefit. While on strong anti-epileptic drugs you really are permanently drugged and live from day to day actually not caring whether you wake up or not.
I’m 68 years old now, settled in France with financial stability. The French health system really is the best in the world and after 6 years here, with a neurologist, psychologist and even hypnotism I’ve realised today, while reducing the toxic affects of medication, that my real personality is emerging.
There is a light at the end of the tunnel, I’m getting my driving licence back after 17 years. I’m going to spend the rest of this year detoxing, under my neurologists care, and in the spring of 2021, in my 70th year, I’m going to buy a smart new car, and have the freedom to go wherever I like.
Epilepsy under control, stress free, relaxed, and those feelings of anxiety, mood change, confusion, tiredness, are not epilepsy, they are caused by all the chemicals contained in those damned tablets. Yes, you do need them, but your needs also change, and remember me, it’s self-determination and a belief in yourself, do or die, that gets you through the dark days.