Hydrocephalus: Know, Understand…Appreciate!

Hydrocephalus: Know, Understand…Appreciate!

I have Hydrocephalus and have had brain surgery to treat it, 5 thus far. But.., this doesn’t mean anything in the grand scheme of the condition. Too many people across the world have had more brain surgeries because of it, which is also the number one reason for brain surgery in children (some only a few hours or days old). Being an empathetic person, this is probably the one thing that really gets to me…(amongst other things).

There are some common misconceptions people form after you’ve had brain surgery for Hydrocephalus. They think that: 

  • You have been cured. 
  • You no longer have headaches.
  • You are fine and back to “normal” – “Just give it time…”, they say.
  • You should be thankful that you’ve survived and “fought well”.
  • You have so much to live for.
  • You are stronger than you know.
  • You are brave.
  • You are too negative and need to be more positive!
  • …(an endless list)

People think many things. Some might argue that one person doesn’t know what the next is thinking so, how could I possibly say any of this? Well…actions speak louder than words, and sometimes, spoken words are heard loud and clear (Painfully so). 

FACT: Brain surgery for Hydrocephalus is NOT a cure. It doesn’t mean that the symptoms disappear completely after surgery either. In all fairness, this might be the case for a while (However long that may be, depends on person to person). And, when said symptoms rear its ugly head again, time after time, the state of mind of said person diagnosed with Hydrocephalus, jumps from 0 to 1000 in a millisecond because, you’re sitting in the front cart of this hell rollercoaster ride! And, what most people don’t get is, if you’re not half dead (Many Neurosurgeons and Neurologists make you feel this way) and your test results don’t correspond with your symptoms – no action is taken. Therefore, you are left to fend for yourself and endure the ride…

What people simply don’t get and what I wish they knew, understood and appreciated is: 

  • You have NOT been cured. (It’s incurable…remember?)
  • You STILL have headaches, vomiting, nausea, etc. And, you can’t always fix it or take a drug to make it better. More importantly, you don’t always get the medical attention you know you need (because you know your body better than anyone else). 
  • You are NOT always fine and, “normal”, is something undefined and without context (mostly as you’ve been forced to find a new norm. Living a constant unpredictable life waiting for the other “shoe to drop”). And, as for “giving it time” – define that, in-between Shunt or ETV failure… 
  • You ARE thankful that you’ve survived and “fought well” but only because YOU HAD NO OTHER CHOICE. And, you KNOW the last “fight” was only preparation for the next – guaranteed to rear its ugly head. 
  • You have so much to live for”, is something which (If said at the wrong time), sounds patronising, most days. However, and regardless of whether you know this to be true or not, you do acknowledge it (kind of). 
  • You are stronger than you know because, once again, YOU HAVE NO OTHER CHOICE! 
  • You are brave…like I’ve said – YOU HAVE NO OTHER CHOICE
  • You are as positive as you can possibly be, under the circumstances but, the fact that you are the one living with the condition, understand the full extent of it all (at least better than most), makes it almost impossible to be in this state of mind, majority of the time. So, you dip from time to time. 
  • Hell! You even go through moments where you pretend everything is “OK” and you’re “fine, going about life, forgetting it’s there…until the playground bully turns it’s attention to you!
  • There’s an impact on your mental health. (Can anyone really blame you..?) And, relationships with family and friends are often impacted the most, not always in a positive way.
  • …(an endless list) 

The effects of the condition aren’t always easy. The havoc the condition itself causes in your life, takes its toll eventually – on all levels…physically, mentally, emotionally and spiritually. The bouts of anxiety and depression are nothing to take lightly. The pain is real. The fight is real. The endless days and nights of feeling helpless, lonely and uncertain, is enough to drive anyone over the edge…An edge you fight for dear life not to go over – the reality so many live with and something most people would rather not talk about or face. Not helpful!

Brain surgery equates Brain Injury – a very real threat to the human psyche. 

All of this is exacerbated when you watch yourself decline daily: memory issues, unable to process information, having “senior moments” at a young age, feeling like a burden, ridiculed by others for your shortcomings (intentional or not – it hurts the same), struggling cognitively because you’re just not the person you used to be…  

*This is especially true if you weren’t born with it.

You get angry, feel tired and know that showing up every day to do life, is something you’ll continue to do – until you can’t. You need the moments in-between to catch your breath, to feel low and rise to the surface in your own way, time and space. But, more importantly, you need to do so without judgement, blame or ridicule.

We’re all just doing life the best way we know how – Off script! 

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!

2 Comments

  • Anonymous

    October 8, 2020 at 1:57 am Reply

    Everything you wrote is exactly how my year has been. There is not enough information on the internet about hydrocephalus. The doctors have no solid answers on the symptoms you feel after brain surgery. The doctor’s reply is always so vague. It’s all so real! Yet everyday you pray for a good day and wish the bad days would fade away. Waking up feeling uncertainty in so many ways. Sometimes it feels like no one understands what I am going through. Like I am all alone with my own thoughts and emotions. Then I read your post and I almost burst into tears because I know exactly what you speak of. We all have different stories but the feelings, emotions, and traumas are all so real. Please keep posting.

    • Skyewaters

      October 8, 2020 at 2:27 am Reply

      That is exactly right! The validation works both ways because, even as people diagnosed with Hydrocephalus, not everyone will understand what I’m saying. And that’s ok.
      Please feel free to reach out to me when you feel alone, I understand it only too well💙

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