I’m a member of the Hydrocephalus family…Never Alone

I’m a member of the Hydrocephalus family…Never Alone

Family.  What defines it?

Because of all the support groups for Hydrocephalus, I belong to and through my blog, I incorporated the phrase at the top of today’s post in my Hydro Logo.  Nothing brings it home more just how big and affected this family is when one of our own succumbs to the condition.  It’s even more tragic when you look at the circumstances and the fight too many of us endure along the way with some doctors.  A fight…just to be heard and taken seriously.

There are so many of us who don’t get support from our own blood relatives or have them understand what we’re going through.  Admittedly, no person can really do so unless they’re going through it themselves, just as with anything else in life…However, this is a debatable topic.


The dynamics in comparison of blood relatives to this Hydro family are so closely related though:

  • You don’t choose the family you’re born into.

I didn’t choose the Hydro family especially since I was diagnosed at age 29 with the cause being Acquired Hydrocephalus due to Aqueductal stenosis.  I don’t think anyone in their right mind (with this condition) would anyway if they had a choice.

  • You don’t get along with every member of the family unit and some you would much rather just steer clear away from (like that aunt or uncle no one invites to family affairs or that distant cousin who just has no tact or is just plain weird and offends everyone)

This is a bittersweet one especially when you scroll through some of the threads (she says smiling with a sigh).  Some of us can really be quite mean, uncaring and opinionated which is disappointing.  But, I believe the trick is to just scroll on by and accept that you simply won’t agree or get along with everyone.

  • You are all unique yet you share a common bloodline which connects you to each other

We are all different and come from all corners of the world.  The cause of our Hydrocephalus may vary, the circumstances too and some may have a more complex/complicated history than others.  BUT, this condition joins us, it’s what we all have in common.

  • You share history and can, therefore, enjoy times of sadness as well as joy in milestones

No other person outside of the Hydro family could ever understand what it means to go a day, week, month or even years without needing surgery or not having a Hydro headache.  Some milestones remain our own, unfelt by our blood relatives, yet sweet victories in our eyes.  When a Hydro brother or sister is in pain and suffering, we know exactly what they’re going through and can fully empathise.

  • A new member is welcomed with open arms and a rallying of the older, more experienced members wanting to assist wherever they can

No person with Hydro would ever wish this condition on another person (I for one don’t wish it on my worst enemy).  But, when someone new joins the group, looking for answers and clearly needing support, we rally around them as fiercely as a mother around her newborn.  We know how they feel without them having to spell it out…because we’ve been there too.

  • The older members offer experiences and advice which sometimes you cannot find in a textbook or even Google searches

Sure we’re not medical professionals with degrees but nothing teaches you better lessons in life than personal experiences.  The only word of advice I have on this one is to use discernment.  Just because it happened to someone else, does not mean it will happen to you but, factoring it into your equation (as a possibility), gives you a better and more informed footing going forward into the unforeseen.

  • Death draws everyone even closer and causes you to take stock of life and what’s important

This week saw the death of yet another Hydro brother.  It really doesn’t matter if you knew Travis personally, never spoke to him before or just saw his name while scrolling through the groups.  It’s the way it happened. It’s the circumstances which led to it that ultimately hits home.  I for one have never come across anything like it and am still dumbfounded as expressed in my last post.  I cannot in good conscience dismiss what has happened.  It’s clear that his death has rocked the Hydro family beyond anyone’s expectations.  It impacts every member regardless of all of the above and in some ways, has drawn people even closer than they initially were.


I can honestly say, this is one family I am proud to be a member of, complex or not.  Being part of it certainly helps when I feel like my own family don’t support me, understand or I feel alone.  The connections I’ve made and friendships I’ve formed are not to be taken for granted.

I fully believe that the death of Travis has not been in vain (More on this in my next post).  If anything, it’s brought more awareness to a condition which has been invisible for far too long.

Thank you, Travis…See you on the other side


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