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…

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…

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