Hydrocephalus:  Never underestimate this condition

Hydrocephalus: Never underestimate this condition

When it comes to Hydrocephalus, I don’t underestimate anything, especially not what I’d do for myself.

Not everyone will agree with the way you handle this condition, not everyone will understand your motivations or your disappointments.  Truth be told, for some of us, this condition is less of a nightmare than others.  Though we understand what it’s about, we also go through it with blinkers on (in my opinion).  Being oblivious or not being able to understand the next Hydro warriors seemingly “nightmarish” situation simply because our journey is slightly altered.

Each of us are in this together but, we are also very much alone.

Making a decision, which we deem to be in our best interests, doesn’t always sit well with those around us.  Regardless, we have to do what we must (I know that’s easier said than done).  I think the biggest decision I’ve made thus far, was to move across the world to another country, in search of better care. Truth be told, I did so only to find out, there is no better care…(It’s all part of the journey I suppose).  But, that doesn’t mean I give up either.

The lengths I’d go to, have no limits, when it comes to what I’ll do…

There used to be a time when I thought I overreacted to the way this condition affects me.  I took it for granted that I would be “fine” and didn’t need to worry anymore.  I’ve since come to learn that this is a luxury I unfortunately cannot afford myself.  I don’t think anyone in any situation, where the odds are stacked against them, would underestimate the possibility of an undesirable outcome.  Some would argue that Hydrocephalus is not a death sentence, others would beg to differ.  I understand both view points and respect it for what it’s worth.  Likewise, I cannot speak for the next person…only for myself.

If there’s one thing I’ve learnt the hard way, it’s not to underestimate this condition and what it’s capable of.  I don’t physically have control over it, nor do I have a crystal ball to tell me when the next episode or brain surgery will be.  It’s a game of wait and see…while you live life (whichever way you see fit).

For those who see it differently, I have this scenario to throw your way:

Would you step into the pen with a raging bull without the slightest bit of fear or apprehension?  Can you honestly say you wouldn’t be crapping yourself if said bull came racing in your direction?  What if that bull decides to nick past you, toying with the idea and power it has over you?  You very well could walk out of the ring unharmed and, live to fight another day but…

I think it’s safe to say, you wouldn’t dare underestimate the damage that bull could do to you.  You would do whatever you can to protect yourself especially, if you have no other choice but to keep going into that ring against your own will.  You see…your own will has nothing to do with it.  Admittedly, in this scenario, no person in their right mind would willingly step into a situation like that, if they had the choice.  So, for arguments sake, let’s pretend there is no choice

What it comes down to is asking yourself the question “How far would I go to make sure I don’t leave myself open?”.  

Would you chance underestimating your opponent?  This could be in the form of any of a number of things (not limited to either):

  • Ignoring symptoms as and when they arise.
  • Getting regular checkups/scans.
  • Getting to know your body and knowing what your triggers are.
  • Having a plan in place and an advocate to speak up for you when you can’t. (This I know is easier said than done).
  • Thinking that you have been “cured” and becoming complacent.
  • Having a lack of knowledge when it comes to this condition because you choose not to know.
  • Thinking that “nightmares” only happen to other people…

I’m not saying you need to live in fear and be paranoid.  All I’m saying is, don’t underestimate the condition.  Don’t dismiss the facts simply because you think that you’re OK.  Just be prepared, know your body well enough to know when something is wrong and never take any of it for granted.

I’ll say it again, ask yourself the question:  How far would I go to make sure I don’t leave myself open?”.  

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!

3 Comments

  • Lisa Gregory

    December 9, 2018 at 7:07 pm Reply

    I just got diagnosed with this a few months ago and don’t know what to do please give me some advice.

    • Skyewaters

      December 9, 2018 at 7:59 pm Reply

      Hi Lisa. Thanks for reaching out. I am more than happy to answer any questions you may have.
      First off, I’ve been where you are but won’t pretend to have all the answers. Feel free to mail me on celeste@skyewaters.com or find me on Facebook at @SkyewatersCD. You are not alone💙

  • Duncan

    November 30, 2018 at 7:22 pm Reply

    Thanks Skye!

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