People with Hydrocephalus look no different to you…

People with Hydrocephalus look no different to you…

We walk among you, have hopes, dreams and fears.  We are employees, parents, children, students, adults, senior citizens and more.  Anyone at any age can receive their diagnosis – we are not all born with it.  But, those who are, experience their first brain surgery hours, even days, after taking their first breath.

Likewise, head trauma is just one of the ways that can lead to this diagnosis.  A fellow Hydro warrior was diagnosed after an unfortunate skiing accident in the prime of her life, another slipped on an icy driveway…fell and hit his head.  I for one had viral Meningitis (Inflammation of the meninges) twice, 7 years apart at age 16 and 23.  The causes are endless…one of the reasons why there probably can’t be a cure for all.

Some of us are fortunate enough to go through life relatively drama free from brain surgery, others… let’s just say they’re not so lucky.  (That doesn’t mean we are drama free from signs, symptoms and excruciating pain).

Most of these Hydro warriors don’t know a life without brain surgery.  Hospital rooms become their second home away from home (or is it the other way around), complete with the “familiarity” of that hospital bed after a long trip away.  We become used to the routines of life behind these walls, it’s second nature and fits like a glove.

We go into the operating room not knowing what we’ll come out as.  Something is lost, new challenges arise or (if we’re fortunate enough), we walk away with “minor cuts and bruises”.  We go in expecting the worst and walk out…different.

How can anyone go through something like that…unscathed

We live a life of constantly being aware of the signs and symptoms, an inclination in the back of our minds to heed the alerts our body gives (regardless of whether we want to or not).  You can try to forget but it’s always there…a reminder that no matter how much you pretend it doesn’t exist, you have an opponent who can and does pounce at will.

To look at me, you wouldn’t know any of this because it quite simply isn’t that evident.  (The joys of having an invisible illness…she says sarcastically). 

It’s NOT a disease (thankfully) so don’t fear, it’s not contagious. 

I smile at you and respond with “I’m fine thanks” when you ask how I’m doing.  Why would I really tell you how I am, you wouldn’t understand?  How could you?

Next time you look at the person next to you on the bus, train, in the car next to you or the person passing you by on the street, a child at the park or a colleague in the same office as you, look twice and know this:

There’s something hiding behind each smile.  Everyone has their baggage in life, everyone has their challenges and no person deals with any of it in the same manner.  It doesn’t matter who it is or where your paths cross, more importantly, it could be you.

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!

4 Comments

  • lizard11366yahoocom

    July 16, 2018 at 2:07 am Reply

    This is very good, but I can’t say this enough: hydro may not be a disease, but many diseases are not contagious. I have Celiac Disease. You can’t catch it from me. If we’re going to argue that hydro isn’t a disease, we have to change our argument as to why it’s not.

    • Skyewaters

      July 16, 2018 at 4:58 am Reply

      Fair point. Thanks for your comment.

  • Bronwyn Daniels

    June 21, 2018 at 4:59 am Reply

    As always, very well written and thanks for the awareness

    • Skyewaters

      June 21, 2018 at 11:47 pm Reply

      Thanks sis 😘

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