It’s easy to feel powerless when you’re diagnosed with an incurable and invisible condition like Hydrocephalus. And, having to learn to navigate life with a brain injury. When life changes within the blink of an eye and your circumstances are unrecognisable. When the person staring back at you in the mirror, is more like a…
There are so many situations we are presented with in life, where we need to start over. Some situations we shy away from and tell ourselves “Its not worth it” and, I guess (given the circumstances at the time), we’d be right. Some situations, however, require us to start over regardless of what we feel,…
Is it really worth having a conversation with someone who doesn’t understand what Hydrocephalus is all about? (I’m not talking about Awareness or education because that will always be worth it). Someone who doesn’t get that this is a serious condition, requiring immediate action, in some cases? Someone who doesn’t get your fears, anxieties and…
A few years ago, my family and I made the mistake of moving into a two storey house with another family. (I don’t recommend this to anyone unless you have what it takes. It’s the kind of situation that can make enemies out of friends and split families apart – like borrowing money). The house…
Someone you love or, even you yourself, has Hydrocephalus. Or, you may have heard of the girl down the street’s cousin who has it. It really doesn’t matter. The effects of this condition, as well as the Awareness and Advocacy thereof, lies with all of us. We do it for ourselves, we do it for…
2 weeks ago, I had ICP Monitoring done (only my 5th Hydrocephalus-related surgery since being diagnosed just over 11 years ago). There were 2 things of note, amongst others, I took away from that experience: A nurse who looked at me surprisedly when I told her I have Hydrocephalus and uttered the words “But you…
ICP (Intracranial Pressure) Monitoring, something I’ve heard about before, seen other Hydro warriors go through but, hadn’t experienced for myself until last week. I went through the normal motions and feelings before surgery. Knowing that a piece of fibre optic transducer sensor would be going through my brain and resting inside one of the ventricles,…
This question pertains just as much to someone who has recently been diagnosed with Hydrocephalus as it does to someone facing brain surgery, which is never easy. For me personally, it doesn’t matter that people say one procedure is “not as bad” as the next, it doesn’t stop me going on the rollercoaster ride once…
Having Hydrocephalus has certainly taught me some valuable life lessons. Some…more obvious than others. The last few weeks have felt like an unnervingly familiar road which I walked a few years back. History repeating itself, with doctors who outright refuse to help me BUT there’s 1 (FINALLY! – it only took 5 years) who will…
My experiences over the last while have certainly not been unique to me (Confirmed by the comments and messages I’ve received). This past week, I have had various reactions consisting of outbursts and crying when I’m alone because of sheer helplessness and more. I regrouped and put my thinking cap on because a situation like…
