Until March of 2017 I kept my condition extremely private, I could count on one hand how many people knew and I wanted to keep that number as low as possible.
In mid-January 2017 I experienced another seizure after going 16 months seizure free (the longest amount of time I’ve gone seizure free to date) which was my worst seizure in a while and it was the longest I had ever taken to recover from a seizure.
During the time I took to recover I was very disoriented so, when my mum asked me if there was anybody I’d like her to tell about me having had a seizure and being in the hospital, I accidentally told her to tell friends who didn’t yet know about me having epilepsy.
Everybody who knew after this was very concerned, caring and supportive.
By mid-February I was doing better but still recovering when I told my mum I had an idea that “I think maybe I might want to do I don’t really know”. Many things brought me to this idea but I believe the unexpected and overwhelming support from the friends who found out about my condition in January, as well as the people who knew beforehand, played a very big role in this moment.
In the week and a half before March I managed to get a local café, councilman and hospital to agree to have the Purple Pledge available to be signed at their locations.
I spent the month of March trying to get as many signatures as possible, in turn educating those who would listen and breaking any misconceptions they had, by spending weekdays at an information desk I had set up in the foyer of the local hospital and spending my Saturday mornings sitting at my local councilman’s Community Consultation Desk where I would answer questions and spread facts about the reality of epilepsy.
I gave my first ever televised news and radio interviews when local media, including a news station, a newspaper and a radio station, decided to run stories on my campaign.
As an epileptic person who was having communication problems at the time due to the fact I was still recovering from a major seizure, this was very stressful and daunting but I’ll leave that story for a blog post another day.
While running this face to face campaign I was mainly focused on trying to educate and break the negative cycles but I also had a donation tin at the information desks, an Online Donation Page, I spread daily facts about epilepsy online and I was able to turn the local town fountain purple for the weekend around Purple Day.
I can proudly say that I collected 352 signatures on Epilepsy Queensland Inc.’s Purple Pledge and raised $350 for Epilepsy Queensland Inc.
I’m also proud to say that my 352 signatures are the most signatures Epilepsy Queensland Inc. has ever received from one person.
I met many people of varying ages through my purple endeavours during March; my experiences with these people ranged from meeting a young child who was very happy to meet another “purple person” and see that she wasn’t alone to meeting adults that were not so kind nor educated when it came to epilepsy and its effects in life.
The negative experiences were really disheartening and made me uncomfortable, at times reinforcing the fears some people with epilepsy have before going public with their diagnosis, but the positive experiences far outweighed the negative and made everything worth it.
The campaign was a bigger success than I ever anticipated and it was empowering to be a part of something that I know has made a positive impact in people’s lives.
The empowering feeling and seeing so many positives as a result of my campaign made me want to do something more and that’s why I’m writing this.
I decided to start this blog to share the experiences, both big and small, I face as a person living with epilepsy in hopes that my stories will reach people who; need to know they’re not alone, want to know more about what loved ones might be going through and who need to be shown that the stigmas and misconceptions they know of may not be true.
At the end of the day I just want to break the cycle of fear and stigma that surrounds epilepsy through education and show others that may be struggling with an epilepsy diagnosis, whether it be their own or their loved ones diagnosis, they’re not alone.
I hope I achieve that and you get whatever it is you need from this blog.