Sat down inside student accommodation, people around me gain confidence, socialise and share thoughts of their early experiences as young adults. Typical higher standards are being set over what I know were much crappier high school times for many people here. For plenty of people, it’s a well-earned relief.
But I’m sat, not standing. I’m keeping myself clear of other students because sharing my thoughts doesn’t gain me confidence; it gets me down. Thoughts come from the brain, but the thoughts that stick with me most aren’t so positive – and if they are, then there’s always a limited amount of positivity up for grabs. I’m embarrassed by a poor memory and feel unable to explain my situation to others.
Memory loss is a common symptom of epilepsy. Seizures play the main game of negativity, but with bad memory setting itself up when I was around 17, I started to realise that my general knowledge isn’t working anymore. I never wanted to be a genius and secure a seat on University Challenge; being bad at quizzes is the least of my problems. But a decent knowledge of popular culture would be so useful at a time when I’m willing to build potentially potent friendships and relationships in higher education.
Back in the Present: This Post Isn’t All About Me
Although I once felt like that, I’ve only given you a fraction of my own feelings during one negative time in my life. With so many people having epilepsy, it’s obviously not the only story to tell. Six out of ten people with epilepsy experience feelings of loneliness and a lack of awareness haunts people with the condition in many ways. When you ask any random person about the condition in public, so often they know very little, and this can cause a substantial amount of people with epilepsy problems in society.
Although other symptoms and medicine side-effects bother people with the condition too, one particular type of seizure is perhaps the thing that people know about most – a tonic-clonic seizure maybe grabs the most attention. But absence seizures? Focal? Myoclonic? Tonic? Atonic? Febrile? You could say that what people believe when they see them can be similar to those in ancient history. So often, they don’t have a clue.
So, What’s My Idea?
When people with epilepsy move into the public, the thought of explaining your complicated condition to a person you meet almost seems impossible. But people with epilepsy do meet others, and they talk to them too. I try to broaden my topics of conversation when I’m having a chat, but the topic of health often arises in conversation. Sometimes I mention my problems with epilepsy.
But when you reach this topic of conversation, there’s something else you could talk about as well. When you start speaking about epilepsy, try and use it as a trigger, and try asking the other person “Do you know much about it?”
Most of the time, I can imagine them responding to the question with “Erm, no, not really…” and a bit of a blank face. I’ve heard it before.
With that response, we’ve usually got no options to inform them and don’t bother to. But what if we could offer them that information about epilepsy that they could view at a more appropriate time? What if next time you met this person, they had a little more knowledge, and understood you and other people with epilepsy quite a bit more? If they know very little, then what if you respond to whatever they say with another question:
“Well, do you mind if I give you this then?”
One Free 6-Page Paper Booklet, PDF and eBook
Rather than hand over a charity’s information booklet, I want to write an overview of epilepsy specifically made for the public. As well as that, I want to give people with epilepsy the option of offering that overview to others whenever they believe the time is right.
The best way to do that? Well, you could just print it yourself. I’m planning to have it all ready to reproduce with a standard printer on nothing more than a Microsoft Word document. You’ll have to turn the paper around and print it again, but is that too much to ask?
I haven’t written it out yet, but have concluded that everything that needs to be said to the public won’t fit inside a tri-fold leaflet. It’s going to have to be two pages folded over horizontally, but I’m sure if we only use standard white paper this will be something people could just fold over again and fit into their coat pocket.
It’ll maybe seem a little odd to offer it or be offered it by somebody else. But if I was in the recipitants shoes, I couldn’t decline. It’s just a bit of paper, and after they accept it, you don’t have to say much; maybe something like “It’s just a brief overview about epilepsy. If you could read it later, I’d really appreciate it.”
And then? Well, they might forget about the booklet for a while, but when coming back across it a few hours or days later, I believe people might be curious to read it. You’ll have made an effort to pass it on to them, and it’s been distributed in quite an unusual way. Picking it out of your pocket, it’ll certainly stand out from other items.
You’ll also have access to a PDF and eBook. If you don’t happen to have a booklet with you, you could just ask for their email and send them the PDF or eBook to read later. It might be less likely to maintain their interests on a mobile, but telling them what the document is could motivate them enough to look back again later.
PDF files and eBooks could also be sent through to family and friends via email. It’s always best to explain what you’ve sent them though – nothing more than a 10-minute read.
Where Can I Get the Free Booklet, PDF and eBook?
Through email subscription to my website, you’ll be able to click a link in an email that offers a download of the needed documents.
When Will It Be Ready?
As soon as possible! I want to crack on with raising epilepsy awareness as much as anybody. However, making sure I cover all the right information inside it is important too. Fitting in what’s needed specifically for the public is going to take a fair bit of thought, and I’ll be discussing the process through with another writer who has epilepsy because I don’t want to get it wrong.
It should be sorted by 18 November. I will launch another blog post to let people know when it’s ready to go. If you haven’t already, I recommend following The Epileptic Man on Twitter and taking a look at The Epileptic Man’s Facebook Page.
I want to get as many people with or affected by epilepsy as possible using my documents. Epilepsy is a present-day example of people being mistreated because they have a disability, and this needs to change.
And even if you’re somebody who lacks belief that this project can work among many people worldwide, it doesn’t matter. Any person with epilepsy should find themselves being more understood by their family and friends if they pass on this information to other people they know best. Communicating with others could well get a bit easier.
Thanks for reading.