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 £90 in our honour.
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!
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.
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