Hydrocephalus: The noisy upstairs neighbour…

Hydrocephalus: The noisy upstairs neighbour…

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 was big enough for all 8 of us, them upstairs and us downstairs.  It was all fine and well until the noise from upstairs started annoying the crap out of me.  (People with Hydrocephalus/Brain injury don’t do well with noise, I personally don’t).  You hear every footstep, anything dropped on the floor crescendos and of course, there’s the fact of just being from totally different cultures.  Neat freak meets hoarder, everything in its place meets anything out of place (losing all your shit).  But, there were plenty of other reasons (despite all initial good intentions), why things just didn’t work out…I think you get the picture though.  Needless to say, that little “love affair” didn’t last long before they moved out…such a simple solution to an annoyingly painful situation.

Hydrocephalus, is my “internal” noisy neighbour, one I can’t simply “get rid of”.

It’s a stubborn 2-year old throwing all its toys out of the cot and, given the strength would throw said cot on top of the pile of toys and set it alight once done (literal demon child).  It kicks and screams and rebels like an all-knowing teenager, believing they are as invincible and in control of their own destiny, simply because that’s the way life is engineered.

Thankfully, the toddler/teenager hasn’t been around for a while.  (Aside from the recent episode).  I’ve been given a break, reprieve if you like, and can only say “Thank God!

It’s a noisy upstairs neighbour I can’t just get rid of simply because it annoys or irritates me.  (If only it were as simple).  Also, it’s not exactly something I chose to be a part of my life if anything, I wish it never did…(But…yes there’s a BUT – more on this in a later post).

When this upstairs neighbour starts banging on its drums and throws the party of the century, I’m the little girl huddled in the corner…rocking back and forth praying for it to end.  It’s the bully on the playground who decides when and if the punches stop rolling in and, you definitely don’t stand a chance.  Dirty, tear-streamed face…you get back up just thankful to still be breathing at the end of it – or are you?

We’re joined at the ventricles regardless of them being slit-like, till death do us part – Divorce is NOT an option.  A baptism by fire that I’d rather have walked away from but, here we are.  My ETV is the detour to reroute the buildup of CSF and prevent any nastiness, sadly though, it’s not a cure and I’m painfully aware of this.  Also, this treatment option has been giving me some grief lately and at this point in time, I’m at a loss, filled with anxiety, helplessness and despair.

And, wondering when it will strike again…

This condition is not a plan but, I am powerless to stop it or its cronies and torture tactics.  It’s just such a pain, literally and figuratively…However, with each new episode, I learn what works for me.  It may not be what works for someone else and vice versa but it gets me to see a new day, week, month or year.  Who knows, maybe this neighbour will behave itself for the next while or maybe go into an extended hibernation.

 Wishful thinking?  Maybe…stranger things have happened.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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