Epilepsy Action And Me

Epilepsy Action is Britain’s largest non-profit organisation providing support and advice for people with epilepsy as well as carers, teachers, students and health services. I have been a member of the organisation for about four years now.

Through the wonders of their website, Facebook, Twitter, my blog and the regular magazine which comes with membership, I have been lucky enough to find new friends with epilepsy and am in touch with the people behind Epilepsy Action themselves. They will regularly “retweet” any blog post that they feel is relevant to their members and anybody who wishes to learn more about the reality behind the myths (and myths abound, trust me!) and they occasionally ask me to edit the post to include pictures and links, which I am always very happy to do.

Ever since I was forced to give up work some years ago I have wondered how I could still improve lives and make a difference to somebody’s day (I was formerly a care assistant to the elderly). In October/November of last year I decided to begin this blog – just in case anybody with an interest in the disorder should wish to read the personal views of a person with epilepsy.

I was not expecting the attention I began to receive. All of a sudden people were adding me on Twitter – people with similar stories to mine. Strangers occasionally stop by and thank me for focussing on a certain kind of seizure; a lady once moved me to tears by telling me about a child she’d lost through a seizure – thanking me for writing about it. Here I was, a disabled, middle-aged housewife who is really nothing and nobody special, making the difference I had wished to make. It was amazing.

Then, on May 14th this year, I married my fiance of five years and decided that – in lieu of gifts – I would ask guests to donate to Epilepsy Action to celebrate our special day. I sent off for some envelopes (which are free) and our small clan of friends and family managed to raise Β£90 in our honour.

First kiss as the Tribble’s wife!

Soon after that Epilepsy Action emailed their members, informing them that a new page for achievements had been put up on the website. I decided to tell them about my wedding and how I’d managed to walk down the aisle without my walking stick (over the years seizures have had a severe impact on my balance and coordination). I submitted a photograph and a brief comment, left my details and thought nothing more of it. They had already organised a press release about our wedding guests’ donations in our area, after all.

When the phone rang in August I was certainly not expecting the caller to be somebody from Epilepsy Action, who was putting together an inspirational documentary about the things that people with epilepsy can achieve! I didn’t believe that my simple achievement of leaving my walking stick out of my wedding day was anything special – and yet a few days later I was sat in my garden, being filmed for the documentary on a lovely sunny day. A link to the documentary shall become available here as soon as I know what it is!

Even a rolling camera can’t shut me up!

I have since signed up to become a Media Volunteer for Epilepsy Action, and I do all I can to promote the cause – right up to gaining extra online coverage for those taking part in sponsored events, or raising extra awareness for people who are affected by the rarest forms of epilepsy (if you Google “Othohara Syndrome” or “Rafferty Binns” you will quite likely have one of my blog posts show up).

So this is how my life and the work of Epilepsy Action intertwine. I like to believe that there is always a way to make a difference, even if you are restricted in your mobility as I am.

Please follow my links to the website to learn more about epilepsy. Some of the members featured on the site are quite extraordinary. Perhaps you could think about donating, or buying something from their online store to show your support, or maybe organise an event to raise money and awareness.

The envelopes I ordered from the website

If you are a person with epilepsy – or care for/know a person who is – please consider following the charity on Facebook and Twitter, to keep up to date with upcoming events in your area. There is also a membership helpline on 0808 800 5555

Most of all, thank you for having taken the time out of your day to “visit” me. I hope that I have been as informative and entertaining as I intended.

G. Wright, Media Volunteer for Epilepsy Action

12 Responses to Epilepsy Action And Me

  1. Pingback: New Page | Wine And Roses From Outer Space

  2. The Asian says:

    I always have great respect for those who raise awareness for diseases like this, especially if they are misunderstood like epilepsy still is. Big thumbs up to you! πŸ™‚

  3. epilepsymeandneurology says:

    great blog! self advocacy is defiatly the way forward!

    • Thank you! This blog began as an outlet for caring after I’d been unable to continue my work as a carer to the elderly. If we don’t talk, we can’t educate and that helps nobody.

      Thanks for stopping by and following; I’ve followed suit πŸ™‚

      • epilepsymeandneurology says:

        thank you! i completely agree. Not talking leads to fear and ignrance. Education and empowerment are much more productive. have a happy christmas! πŸ™‚

  4. rastelly says:

    You seem very well read. So I’ll go ahead and mention Silas Mourner – a book by George
    Eliot. I recall the hero suffered from a neuroglogical disorder that caused him to stare blankly into
    space for hours at a time – and not remember a thing afterward. What I find so interesting is that these fits were such a small part of who this character was – and an even smaller part of the story as a whole. For a book written in age of superstition it is surprisingly progressive, especially with
    rich and poor characters being presented as people rather the heros and villians. The story
    centered around a little girl who was the bastard child of a squire. The girl would grow to be
    a postitve influence on all the other characters – My father says it’s the greatest story ever told
    I love fantasy so all I can say is if it can make me pull my head out of the clouds it must be
    good – George Eliot was the pen name of a woman . . .

    We usted to think Old Silas Mourner had Epilepsy – but now mom thinks it was catalepsy –
    there was a part when a burgler was able to rob him during one of his “Fits”. and there were
    those who feared him, thinking that his soul could leave his body. Silas himself had no way
    of knowing what was happening to him, he was an outcast from a group of religious nuts
    who thought the devil was using him to steal from the church.

    Ever hear of the chicken boy of Figi?
    A little boy in Figi spent so much time locked in a chicken coup he started to act like the chickens.

    People wondered why anyone would do that to a child – and it’s thought its because the child had Epilepsy – people in Figi believe in demonic possesion so it’s possible his parents were afraid of him. According to the documentary he is thirty and living happily in a group home in Figi. The show was part of Documentary series on Animal planet about human children who adopt animal
    mannerisms –

    Just thought I’d mention some stories you might be interested in.

    Silus Mourner is fiction, the Figi boy seems to be true –

    I tend to leave long letters every now and then to make up for long absences.

    Good to see your still blogging.

    Note – Silus Mourner can be a hard book to read – the words are a bit dated – but there is a really good Movie.

  5. Glynis Smy says:

    I am helping on a fundraising group for a little girl from Braintree, Essex. She needed a special bed, and we got it! She needed an alarm mat but was turned down, so we got that! We are now frantically raising funds for her car seat. She has a rare form of epilepsy, and her mother suffers, it is horrid to think little one doesn’t have a great prognosis and her parents (with three other children), have to raise funds for her comfort. I admire all who help and support those in need. I just donate or buy something from the auction but every little helps. Keep up the good work. πŸ™‚

    • I live in Chelmsford and got married in Braintree! Aside from spreading the word, is there anything I can do to get involved or otherwise help? I could contact my Media Coordinator at Epilepsy Action if you’d like? Anything to get this little girl the exposure and equipment that she needs!

  6. Katie says:

    Keep up the brilliant work. Well done.:-)

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