Hydrocephalus : Awareness begins with you…

Hydrocephalus : Awareness begins with you…

Before the start of this year’s awareness month, I didn’t have a plan of what I would do.  However, a few days before, I felt a growing need inside of me to spread awareness simply because I recognise the need to shine a light on this invisible illness.  It wasn’t about making this condition bigger, better or more important than any other life-threatening condition.  Many people on this earth struggle with their own battles, ones no-one knows about.  Many lose their fight and many survive but (for reasons known only to them) do not tell the tale.  However, this is a condition I was forced into becoming very intimate with, at the age of 29.  (As I’m sure every other person affected by it too).

To be quite honest with you, it has been physically draining as I’d go to bed just before midnight almost every night and a big chunk of my weekends have been spent putting my posts together as well.  (I have the bags under my eyes to prove it!).  Then a few nights ago, my husband said to me “You’re probably going to be so glad when the end of the month comes” and I smiled saying “Yes, I will because…I’m tired“.  He said, “But why are you doing it?  No-one asked you to“.  I looked at him for a little while and said “I know, but, I wouldn’t change any of it because I want to do this.  It’s important to me“.  He just nodded because he knows that much is true…Exactly how I found the energy to do it all, escapes me…doing posts early in the morning before dropping my kids off at school and then continuing to post to all the Hydro support groups I belong to, (frantically) on the train to work before and after I lose reception going through 2 tunnels.  After a full day’s work, dinner, making lunch for the next day, cleaning up and reading my daughter her bedtime story, I’d sit in bed working for a few hours more.

I also wore my Awareness Advocate t-shirt every Friday with my jeans (this is our casual day at work).  It didn’t matter that I’d get asked, “Don’t you have any other t-shirts to wear?” (jokingly said by one of my colleagues).  What mattered was that I had the opportunity to tell at least 1 person who asked, all about this condition that affects so many people around the world.  (It was a bonus to tell at least 2 or 3 in one day).  And, quite entertaining to listen to someone try to pronounce it!

(Me at the start of Hydrocephalus Awareness Month – I was literally buzzing all day long)

Many people, throughout the month, said to me “It’s not Awareness Month where I am“.  I’d normally tell them “Well, it’s not here where I am either but that’s not going to stop me from spreading awareness“.  The thing about this for me is, this condition affects so many of us across the world…Awareness should be universal.

If I have managed to make a change in at least 1 person’s life or educate at least 1 person with the posts I’ve shared, then I’d say that’s a pretty big deal (at least to me it is).  I wish I could have done more though…

Awareness should be a constant thing and not just something that lasts for 30 days a year because let’s face it…this condition affects us 24x7x365 a year.

Finally, I could not have done this without the input of those who contributed, shared and commented on my posts.  We have spread awareness together and to you all (you know who you are), I say:


Keep on advocating, keep on spreading awareness and keep on keeping on.


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