Hydrocephalus: Shame on you…

Hydrocephalus: Shame on you…

When I wrote We are not faking, I meant what I said. What I didn’t know at the time was how much of a lifeline these words would become. A lifeline not that someone else throws your way but one that you need to remind yourself of, more than just a few times. It’s never ending. What’s even more insane is the fact that you have to remind those closest to you of this fact…All I can say to those in our lives who make an unbearable situation even worse is: Shame on you…

We don’t all experience the same things with this condition. Our relationships with others don’t mimic each other. So, for this reason, not everyone will share the sentiments in this post. That’s OK.

As someone who lives with an incurable condition, you should never have to apologise for the shortcomings you have. This is especially true if the condition and treatment options are the cause. It doesn’t matter what it is, and it more importantly doesn’t matter if others can physically see it or not. To say we live with this in “our head” is not only literal but it’s the truth on so many levels. It doesn’t make us crazy it’s just the fact of having to live with a Neurological condition.

I’ve always struggled to convey what I go through to family and friends. It’s become a sore point with so many people in my life and one which requires me to be different depending on who the other person is. Some I invest time in and explain, more than once, just how it affects me or what I have to do to keep my head above water. Some I simply don’t bother with or avoid discussing my condition with them because they are just too ignorant, selfish and require too much work.

For example:

  • My memory issues, remembering certain events and having absolutely no clue about the next. I don’t control it and I certainly don’t choose what I can and can’t rememberit frustrates me, but it doesn’t get me anywhere. Fighting against it is useless and I’ve had to learn to expend my energy on other areas of my life instead.
  • Struggling to remember conversations or even just being indecisive, especially when presented with more than one option. No matter how many times I’ve explained it to those closest to me, they are unable to comprehend. It’s a challenge which adds to this Hydro journey in a negative way and one which causes me to despise them more than anything else.

I’ll be honest and say, it’s hurtful and because I’m human, I’ve literally wished they could experience the full effects of Hydro (including brain surgery) for just a week, a month or a year – until they get it. Given how hard I have to fight to be heard and understood sometimes, I don’t know just how sympathetic I’d be if they were in my shoes…It would probably be more a case of “I told you so!

I’ve written before about how my own brain sometimes makes me feel like a liar when I remember certain things and others have seemingly slipped into a black hole…yet, I know I’m not. It’s a feeling which leaves you conflicted. I get confused by it and can’t understand why I remember certain things and not others. I guess standing in the shoes of someone else, I can see why they would think I’m selectively remembering but…that’s their prerogative.

I wasn’t born with Hydrocephalus so, learning (which is constant) what I can and can’t do, what I struggle with and what comes easier, is constant work in progress. It’s a confusing state of mind when somewhere inside of you there’s a literal crossroad. One where your body and mind take separate routes and leave each other in a state of confusion, going in different directions. Firstly, you need to try and make sense of what just happened and then as you struggle through to get back on track, you realise the road is a dead end. No matter what you do to try and forge a way through, you can’t. If you are to survive, you figure out a way to go over or around. I’ve learnt the hard way that (despite fighting against it), if I dismiss the physical effects and rise in anxiety it causes me, I will pay the price. Others around me go about their lives oblivious to any of it. They ridicule and hold it against me for not remembering certain things or not being able to “just make a decision“.

If only you knew how crippling it feels…right to my core.

It’s something which affects me physically, emotionally and spiritually – on all levels. Some memories are even strung together out of sequence causing more confusion because what’s in my mind isn’t necessarily the way things have actually occurred. Like packing away the toys of a child with OCD, it makes sense to them to have everything in its place but to you it just makes no sense at all. I’ll always maintain, the more hurtful the memory and based on the depth of the wound in your heart, some memories won’t be erased. You may wonder how or why this is but I can’t answer that…I’ll be damned if I know!

In some of the support groups, I’ve had people tell me, “You don’t have to apologise for anything”. They’re right.

If you are going through this, this is my advice to you. Start by answering this question:

Can you change the way the condition and treatment options (brain surgery) have affected you?

If the answer is “Yes”, think long and hard about how you’re going to do that, then go ahead and fix the frustration of those around you. If the answer is “No”, (which I’m willing to bet my life on, it is), then take the advice of the people in the support groups as a start.

Remember: You didn’t ask for this condition, or the challenges that come with it but here you are. You live with it on a daily basis. You have the inside info. Sure, it’s hard convincing others around you of the challenges and struggles but why should you have to? Anyone who does not accept your word for it when you’ve explained it to them (a message I struggle with having a muddled brain and all), does not deserve to be a part of your journey. In saying this, I realise it may mean that, that someone is one of the closest people in your life. True as that may be, you owe it to yourself to maintain a certain amount of sanity in all the madness and Hydro drama. This condition is here for the long haul, it’s not going away…you may as well make peace with it (as best you can). It’s the kind of condition that will either draw people closer to you or show you who your real friends (and family) are. This is a painful part of the journey but the sooner you accept it, the sooner you can get on with life and surviving.

Sure, it’s sad when you have to cut people out of your life, especially if they’re close to you. I always remind myself of the saying, “People come into your life for a reason, a season or a lifetime”. Change is part of life – some you learn to accept and others, well…it requires some tears to be shed. I do believe though that after the tears, there will be “joy” or at the very least, a weight lifted off your shoulders. You will have let go of the feelings, hurt, negativity and chains of guilt (of shortcomings you have no control over) and swapped it out for a life where you no longer feel like you owe someone an explanation or apology.

Remember, you can’t control how other people treat you, but you can control your reaction. Choose to stay sane and let them go…


  • Tom Pawlowski

    February 6, 2020 at 1:56 pm Reply

    Just read your latest blog about doctors’ bias and it sounds VERY similiar to what WE(including our furry child Zora) went through back in 2016,when my wife had to call an ambulance back in 2016.because I was having stomach pain because my shunt runs down in to my peritinem (not sure on spelling) and after numerous tests,the physicians assitant said to us”There’s nothing wrong with him,”We can’t find anything”,Only to be back in the hospital days later with what started to be multiple shunt failures,which put me in the hospital for Thansgiving,Christmas, of 2016 and New Years Day of 2017,I feel ok now except for the usual side effects,one of which is dehydration,and the fact that when the most recent shunt revision was done,the neurosurgeon said,There may be nerve damage in your left ear because a nerve may have been hit when the revision was done and I’m just supposed to get hear aids (2nd set of which failed on the last night of our 20 year anniversary cruise) and accept it!,When the first two shunts failed the only doctor that was on call was one that was in the same office with my original neurosurgeon (shortly after birth) who as I’ve come to find out does MOSTLY back surgeries,Because of financial difficulties we weren’t sure if we’d win the case because the doctor we felt would’ve covered his posterior(for lack of a better expletive) so we decided not to pursue legal action.

    • Skyewaters

      February 6, 2020 at 8:16 pm Reply

      Hi Tom
      I’m sorry you had that experience and yet it resembles what so many of us go through. I wonder if they get what they are doing and what kind of person you have to be, to treat another person this way (or even be the cause of what follows next, due to your inaction).
      I’m glad you lived to tell your story. Shine the light on the Hydro world and keep sharing?

  • Don Clough

    December 29, 2019 at 1:24 am Reply

    Here’s some questions that I ‘m asking myself lately: How long do I put up with this before I say “enough”, and walk away?; What do I do then, since I have had big problems in managing my money. Last question: had my hydro made I impossible for me to live alone? I don’t like the problems, or the questions, but, I honestly wonder if I’d be better off on my own.

    • Skyewaters

      December 29, 2019 at 1:38 am Reply

      Hi Don
      Not easy questions or problems. I’m no expert but if you want my opinion, this would be it.
      If you can do something about it, then do e.g managing money. You can work on this and find ways to overcome it. Hydro, it would depend on how badly you’re affected. Are you self-sufficient? Do you have coping strategies? Do you have other support people in your life who you can call on, should the need arise?
      The fact that you’re asking if you’d be better off on your own, means you’ve already started to think about it. There’s a reason why and only you know the answer to that. The alternative, if you don’t, you have to accept the situation as it is, unless there’s change for the better. I wish you all the best?

  • Susan K Bowman

    December 27, 2019 at 4:20 pm Reply

    I get it my fellow Hydo warrior

    • Skyewaters

      December 28, 2019 at 4:05 am Reply


  • Tom Pawlowski

    December 26, 2019 at 3:54 pm Reply

    Just go through reading this and the story by Celeste Daniels,both are very well written and describe perfectly what all of us go through on a daily basis,Many of us may look and sound fine and in my case sound articulate in speech,(being my best subject in school,BUT things can change in an instant AND yes #Hydrocephalus is A CONDITION NOT A DISEASE,as it’s often stereotyped,I think because of my articluate speech and how I look people have always said Oh you’re fine,the compliments and positive reassurance are fine but people need to realize that other things can happen with this condition,short term memory loss,brain cramps,incomplete thoughts and other “side effects”,etc. and we shouldn’t be judged or bashed by it!

    • Skyewaters

      December 26, 2019 at 8:53 pm Reply

      Absolutely! Hopefully the more I write about it the better their understanding will be…maybe.
      Thank you for your comment Tom.?

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