Hydrocephalus, the reason why you are part of certain Facebook groups, the reason why you troll the internet looking for help or answers to the myriad of questions you have. Either you, or someone you know and/or love has this condition.
The Hydrocephalus Association in the USA does it right, in my opinion, for the “millions affected by this condition“. However, truth be told, there are quite possibly billions around the globe living with Hydrocephalus. It’s fair enough to say that the exact number is unknown and more importantly, it doesn’t mean other countries don’t have men, women and children affected by it. Nonetheless, I have to admire organisations like the Hydrocephalus Association and their efforts to fund research into a cure. If I could, I would be at every Walk I could possibly attend just to help raise money for the research they do. I can’t say that I’m aware of any other country doing this, I could be wrong. I also know there is a Hydrocephalus conference that takes place in Australia, I hope to attend some day too.
The “Make Waves” campaign was great and, at the time of coming out, fit nicely into my profile pic on Facebook. I loved the fact that it created the impression of the words coming out of my mouth (see below).
But, it’s their latest slogan that I love the most. “#NOMOREBS” (No more Brain surgery). When I first saw it, I thought, what a clever play on words!
It fits into the top most wish of anyone living with this condition, the prayer of every parent who has to watch (helplessly) as their child prepares for yet another operation…it’s probably THE most common prayer of any Hydro warrior (religious or not). It spells conviction, it highlights strength and most of all, it takes a stand and gives a voice to so many. And, now with the added twibbon, I get to use both frames in one. Awesome!
(Many people don’t know this but, I had this photo taken a few months before I was diagnosed and had my first ever brain operation).
I love writing, which is why I started this blog. It was an outlet for me, one of many initially. But, in time, it’s become my Hydro voice and presence across the world. (This in itself is so amazing, I literally have to pinch myself each time I look at my readership). Some people have told me that I focus too much on Hydrocephalus or implied that it’s consumed me. To them I say, so what, at least I stand for something, at least I care enough about a percentage of the human race living with an invisible illness and at least I care enough to want the next person to know that they are not alone. I love that I can connect with people from all parts of the world. I love that others find comfort in my merely validating what they’re feeling or going through with my words. It’s truly a humbling journey…
I believe a cure will be found, maybe not in my lifetime or maybe it will, who knows…My Tagline for that day will be “#ACureForOneACureForAll”
In its simplest form, Skyewaters.com, is my way of raising awareness. So if it means adopting a slogan like “#NOMOREBS” and “Make Waves” in the process, then I’ll be standing front in line…ready for the challenge. I just hope the Hydrocephalus Association doesn’t mind me piggy backing from way over here…in full support of all their efforts of course.
So what are you doing to raise awareness?