Hydrocephalus: How do you deal with the card you’ve been dealt?

Hydrocephalus: How do you deal with the card you’ve been dealt?

Most people say that your attitude towards something will determine how you deal with it (or any challenges presented).  For the most part, I would tend to agree with this simply because I learnt a long time ago that if I let the negativity in, it might just consume me.

Don’t misunderstand…I’m a realist by nature and therefore see things through that view (most times).  I’ve had bad experiences in life, things I would not wish upon another human being.  Then, on top of all that, being diagnosed and living with this condition (just like everyone else affected by it) and, all the challenges that come with it.

But, I’ve also experienced the opposite.

Experiences that have blown my mind but more importantly the connections I’ve made through my blog, somehow makes it all seem worthwhile.

I think there comes a time in everyone’s life when they question what life is all about, what the purpose and aim is.  Sometimes, these are not the easiest of answers to come by.  I know for a fact that some of you will stop reading at this point, and that is your choice though I hope you don’t.

I was raised by faith.  My core foundation on which all that has gone wrong in my life has been given a place to shine BUT not allowed to breathe past its expiry date.  I accept bad things happen to good people and similarly, there’s a reason why it touches your life.  These have been times where, some might say, God, abandoned me and probably fed me to the wolves.  Maybe…

But, maybe it was a way for me to experience things and be able to glorify His name in all that I’ve endured.

Being diagnosed with Hydrocephalus is something that I tend to play down when people ask me about it.  Then, there are times where I go “Holy crap! I actually have a life-threatening condition“.  The fact that I DON’T have a medical team and am at the mercy of an ignorant physician with a God-like complex, has left me feeling helpless and scrambling for a solution.  (One that escapes me right now).

But, God reminds me that He is the great physician who has earned the right to have a complex, I just need to trust in Him completely.  He knows the plans He has for me and on that, I place my faith and trust, even though I struggle from time to time, I ultimately return to the source.

If I had to single out the blessings of having this condition, it would be the people who have reached out to me, thanked me, made me smile and lifted my spirits when I needed it or just offered kind virtual “hugs and coffee“.  It’s knowing that I could calm someone else’s fears just by openly sharing my own, my experiences or offering a kind, caring word.  This by no means comes from me.  I dare not take the praise.

A former friend accused me of being obsessed by my condition, in the middle of Hydrocephalus Awareness Month.  Her words hurt and the things she continued to say cut deep into my core (but that’s not important).  Then, acting on emotion, I posted something on Facebook.  Later that night, I prayed about it all and truly wished I could share all the good that has come out of my blog and the Hydro world where I find myself.  I wished I could share the view from Skyewaters, where I get to see the pain, joy and strength from people around the world.  But, I didn’t think that she’d be interested anyway especially not since she had clearly made up her mind about my motives and frame of mind.

The next morning, I woke up with a feeling of peace about the whole situation, sad still because I realised that it was the end of our friendship, yet I had no more ill-feeling towards her.  When I logged onto Facebook later that day, I was floored by the response from people in the Hydro community.  I felt humbled and at the same time, it became crystal clear what my purpose is.  I’ve (suspected) known it for a while but somehow this was just a confirmation that I’m on the right path.  I think my friend must have seen this too because she sent me an apology…so no more hard feelings.

Hydrocephalus has touched my life in a way that I don’t think anyone could have prepared me for.  I don’t ask “Why me?” but “Why NOT me?”  So if my friend is right, then maybe I’ll confess and say: Yes, I am obsessed.  It’s a world I’ve flung myself into boots and all and one that I won’t change for anything or anyone else.

I think I’m stronger now than I was before diagnosis.

If anything, being diagnosed with Hydrocephalus has brought me closer to God.  It’s about holding out my hand and giving back to the world.

So often our lives take on new turns, adventures and/or journeys.  So often we have a choice in the matter of which way it’ll go but most times not.  I guess this is where choosing your attitude comes into play.  We’re all here on this earth, trying to do the best we can.  Life isn’t always easy or fair and, some days “s**t happens” and you’re dealt an incurable condition.  You can be angry at God, life or whomever you choose but ultimately, where’s that going to get you?  I’ve had people tell me that they are Atheists and even be mean because of my beliefs, and that’s their choice…it’s fine.  It won’t stop me from believing…

Is your attitude going to make you stand out from the crowd or cause you to huddle up angrily, hiding in a corner?

You choose…


  • Megan

    September 28, 2017 at 3:03 pm Reply

    This strengthened my relationship with God too, especially after he held my hand in ICU as I settled in the reality of what had just happened after my ETV. He is amazing.. we can’t always understand his plan for us, but just trust that it’s a good one that ends in glory.

    • Skyewaters

      September 28, 2017 at 9:47 pm Reply

      Absolutely Megan! Thanks for sharing ?

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