Hydrocephalus:  Another year without brain surgery…Woo Hoo!

Hydrocephalus: Another year without brain surgery…Woo Hoo!

8 years today exactly…that’s how long it’s been since my last brain surgery.  3 operations over 3 days (5 and a half months pregnant) and yet, here I am, writing this post.  8 years since I had my emergency ETV (having surpassed the 5-year mark the surgeon told me, in which it could fail).  It was a time that resonates so closely with me and yet, not those around me.  I’m not living in the past or feeling sorry for myself, on the contrary, I’m more in awe of the drama that point in time delivered my way.  It’s something that will remain with me for a very long time to come purely because there’s no way I can in good conscience minimise that time in my life.  It’s not a limp I once had and recovered from, in fact, every person who has this condition and has gone another day, week, month or year without surgery would probably understand it in its entirety.  This post is for all us…

I can’t say that going another year without surgery has relaxed me to a reasonable state, having passed that mark, that is.  This statement is so similar to the one I made in last years post…

FACT: ETVs fail outside the norm, they can fail on day 1 or year 32, no one really knows.

My 7-year old daughter is a constant reminder of that time, she survived it along with me.  Being forgetful, having memory issues or even trying to choose when there’s more than 1 option (regardless of what it is), drives me batty. Coincidentally these same things seem to plague my daughter too.  I wish I knew what the effect on her as a foetus was while I was being operated on and recovering in ICU.  I look at her and can’t help but wonder if there’s a correlation…

I have a suspicion that she may have had some effect because to me, it just doesn’t seem normal for a little girl, her age to have these issues.  Sure, kids are forgetful all the time but I know the difference having more than one child but more importantly, I for one won’t minimise the struggle of it.  Being someone (especially) who experiences it and have others who do it to me.

I wish I could say it’s been yet another uneventful year in terms of Hydrocephalus but I’d be lying.  However, it wasn’t as major as me requiring brain surgery and for that, I’m extremely thankful.  That’s what this anniversary posts will be about, me being thankful that I went another year without further surgery.  Sadly, this leads those closest to me to believe that “I’ve been cured”. LMAO! There is no cure!  (She says sarcastically for the umpteenth time).  I guess they didn’t pay attention right from the start when the surgeon said it’s an “incurable condition”.  But, we each choose what we do in life, especially our reactions and attitudes to that which happens to or around us.  Thankfully (again another thing to add to my list) I am fully aware and am not in the least bit fooled into sharing their sentiment.  Thank God I have myself to depend on and look after my best interests even if no one else does or has the luxury of occasionally forgetting/brushing it aside.

I’ve heard somewhere along my journey that “you should celebrate every day that you’re alive because each is such a blessing“.  Well, true as that may be for some, it’s not always easy especially when life happens.  I don’t subscribe to that fluffy bull belief anyway.  I’d rather be realistic about it and refuse to con myself because that way, I won’t have anyone to blame when the crap hits the fan.  I have to wonder what kind of blessing it is when you live life waiting for or are glaringly aware of the other shoe dropping (the little hole in my ventricle (brain) closing or not working optimally as would be expected, in this case).  Or having scares with headaches that threaten your sanity and fighting against medical professionals who dismiss you at every turn.  I suppose the fact that I’m still standing is a testament to them being right and possibly me wrong – whatever!  

The crazy comes out in all of us from time to time and this condition has the potential to make its incumbent go for gold in that regard, almost daily.

I’m a survivor in more ways than one and I’ll continue to fight against whatever this life throws my way.  Giving up is just not an option…Death will have a cowards’ win over me one day, purely because of this stance I’m taking.

I’d raise a glass to this celebration but I’d have to settle for water because my current state of health does not allow me to indulge in anything alcoholic.  Glass half empty or full…you decide.

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!

2 Comments

  • minionmayhem514

    December 3, 2017 at 9:37 pm Reply

    Congrats on another year!

    I really think the idea of being cured is something that other people have to cling to as a defense mechanism. They don’t want to face the fact that someone they care about is dealing with something incurable. I can’t count the number of times that well meaning people asked me about my daughter by saying “she’s fine now, right?”

    • Skyewaters

      December 4, 2017 at 7:21 am Reply

      Thank you?
      There will always be those people and I’ve just come to accept it as part of the journey, whether I like it or not.

Post a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.