It was last week when it came to my attention that Finding Freedom with Epilepsy has been active for six months.
Upon reflection, I can’t believe how much I’ve packed in! It’s been a fascinating, educational and rewarding journey. Circumstances dictate what you can do based on both your thought processes and weighing up feasibility. Back in February I was lucky enough to be in a position where I could really get this project off the ground. There is still so much to achieve, but with each step a difference is made. Optimistically, it makes me hope that with all the advocacy currently being undertaken it will create the ‘butterfly effect’.
The last couple of weeks have seen FFWE take a bit of a back seat with my writing being somewhat sporadic. However, this time has allowed me to step back, look at the concept objectively and decide what direction I want to guide it in over the forthcoming six months.
FFWE was conceived by having been exposed to the reality of how the world sees epilepsy as well as becoming aware of negative treatments that have been experienced by individuals in my local community. It became all too clear that something had to be done to ‘advocate, educate and inspire’. My objective was, in various mediums, to provide people who don’t know about epilepsy the basics as well as providing both generic and less discussed information to those who are connected to epilepsy.
Over 65,000,000 people worldwide live with epilepsy. This number is greater than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined, yet there is more money spent on those conditions than epilepsy. Of course this doesn’t lessen the importance of fund raising for those illnesses, but it does put into perspective just how much work still needs to be done in raising awareness for epilepsy.
Overwhelmed with the prospect of how to even begin going about this huge task, I had the invaluable wisdom of my career advisor Amanda Johnson at Career Solutions Plus. Ironically, she is a fellow Brit who, when in England, shared the same stomping ground as me which was a great foundation for our working together. She broke down the idea and advised me of the process which enabled me to build up each segment, strengthen it through extensive research and put it together as one.
With the original concept I knew where I wanted to take it but over the months it has changed in a way that I didn’t think it would. Initially, I had the notion that it would be practical by providing information solely about epilepsy, facts, myths, options etc. While I had this aspect covered and every blog somehow had a link to epilepsy, I digressed more to documenting my life on a day to day basis. This now enhances the blog in a very positive way. It demonstrates to those reading that everyday achievements and activities are possible despite limitations. Granted, this doesn’t include being a fighter pilot for example, (let’s be realistic!), but things like leaving the house and catching a bus, being able to study and for some living alone and being able to make dinner, so it’s the simple things.
Through research I have learned much about the extensive differences as well as similarities that epilepsy sufferers have. I have attended lectures providing detailed information in a variety of areas including anti-epileptic drugs. In particular, the education about the positive effects of medicinal marijuana has been extremely valuable as it was a completely new concept to me. All of these factors I have felt necessary to share through my blog just in case it could make a difference to one person. As I am making more connections I have been overjoyed to see increasing numbers of people advocating in their own way for this cause. I have teamed up with people, exchanged information and we have often promoted each other’s events. I have been passed on to contacts that are able to help if I arrive at the door of someone who isn’t directly able to.
So to conclude, it’s been an immensely satisfying and worthwhile six months. One of the aspects coming from this project is that it has allowed me to discover just how much I love writing. Not only do I love writing but what makes it even more gratifying is that so many people from all walks of life are interested in reading the content. The feedback from my readers is overwhelming and reinforces the purpose of my continuing with this. The positive comments and emails asking questions about my own experience and whether there is any advice that I can offer them with their situation is something I treasure. This venture wouldn’t be possible without the support of my readers so most importantly this blog today is dedicated to you as I say an enormous thank you to you.