Who’s with me..?

Who’s with me..?

Something has got to be said for surviving a milestone with this condition.  However, it’s not just about surviving another week, month or year without surgery because that in itself is a priceless gift (any Hydro Warrior would understand and acknowledge it).

I for one, have literally survived…

  • Without that added extra…Medical care.
  • Fighting against the system and praying to be heard.  In all honesty, I’m probably the only one kicking and screaming like a 2-year old throwing a tantrum.  No one else around me takes any of it serious enough, IMHO.
  • I don’t have regular checkups or scans to make sure this little hole inside my head is still open.  (I play the wait and see game – it drives me insane some days).
  • I don’t have a doctor I can call if the shit hits the fan or I feel something is “off” or I feel I need help.  I do, however, have an Emergency room at a hospital to go to where all they do is manage my pain and do ineffective CT scans – To say I’ve become submissive (momentarily) would probably be accurate.  I’ve accepted that I can’t do much about it (for now) and acknowledge that there are people even worse off than me.

If I had to sum it up, it’d probably be something like:

I feel like a tree whose branches have been bent to succumb to the desired shape, growing in a direction, which is not natural to me. 

(Some might argue that this is better than what most people have and you’re probably right.  But, when you’re used to better/different, it’s easy to see the below par state of this kind of medical care – it’s simply unacceptable).

If you’re anything like me or share the same kind of situation/way of thinking, I have this to say to you:

It takes balls to face the reality of knowing you are without any real medical help and willing yourself to just survive.  To accept the inevitability of what might happen…something which has been written into your journey before the start.  (Some never even make it to this point in their life anyway).  You’ve got more guts than most and are a true survivor. 

I think a situation like this messes with your head if you allow yourself to overthink it (like I do).  However, it does leave room for growth once you figure out the best way, for you, to handle it and reach a level of “comfort”.

I’m reminded of a comment made by a friend of mine not so long ago, “You need to learn to live“.  It felt like a criticism of the way I’m choosing to handle my situation…But, he has no idea what I’m dealing with, how I feel or the ripple effect of it all.  Isn’t it true though about so many other facets of life?

No person has the right to judge or minimise what someone else is going through or the way they handle/live their life.

More importantly, I also know that I am not the only person in the world in this situation, which is why the Skyewaters logo stands out even more to me – Never Alone.  A timely reminder at various junctures on this journey.

Alternatively, you could call it divine intervention, or the science of the ETV which is still open (I assume…something I hate to do).  OR, maybe I’ve actually managed to “manage” the condition and reached a level of riding it out as best I can.  OR, maybe I’ve lost my mind…who the hell cares..?  (Feel free to disagree).

Bottom line is…6 plus years later of not having that medical safety net and I’m just over it.  I’m patting myself on the back and saying, “Yay me!  Every day is a win.  I’ve stood my ground with every attack and episode, I’ve been knocked down physically (literally) and yet…I got back up!”.  And, I’ve come back stronger.

I’ve become totally immune and hard arsed towards the medical system which makes me feel like an invalid.  To say I don’t care might not be quite accurate but I do feel less for the situation which has held me hostage for the last few years.  I will always question and, I will always want better because I know it can be.  I will always be hopeful that it will improve.  More than that, I don’t just want it for myself, I want it for each and every other person living with Hydrocephalus, sitting alongside me, in the same boat.

If that’s you, grab your life jacket, pick up your oars and paddle on…


  • lindakthelion2

    June 10, 2018 at 2:06 pm Reply

    Very true and very frustrating. Experiencing a headache so painfull and intense. Knowing that my Neurosurgeon is 5 hours away. Knowing that there is not a Neurosurgeon here in the area where I live that is willing to see me. Going to the ER . Having a C.T. Scan. Being told “Yes”, “ Your ventricles are very large and there is an excess amount of fluid in there”. Given a strong narcotic pain reliever to mask the pain until the next time. Sent home with the instructions to call my Neurosurgeon. Back to square one. Narcotic pain med has worn off. Head is throbbing. An ice pack tied around my head. it hurts to move.and to breath Alas, the only accomplishment from the trip to the E.R…. A cost of a thousand dollars, frustration and a headache more intense than the one that brought me there to begin with.

    • Skyewaters

      June 10, 2018 at 8:49 pm Reply

      It’s a scary situation. Just reading this comment from you has me concerned for your wellbeing. I wish it wasn’t so hard.
      Thanks for sharing?

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