Hydrocephalus: Anxiety and Memory Issues

Hydrocephalus: Anxiety and Memory Issues

I know this is probably an old topic but, for me, it never grows old simply because it affects me on a daily basis. I possibly haven’t labelled it as such before, but I do feel anxious when someone challenges me on the validity of my memory issues. There’s a noticeable build-up of fear, anticipation and Déjà vu (having gone through it so many times prior to this) before my emotions explode, as I try to defend myself. Not a pretty sight…

Firstly, I know this is an invisible condition which makes it hard (even frustrating) for anyone who doesn’t have it, to fully comprehend or understand the challenges. More importantly, I have enough patience and understanding to explain to, or educate, someone first, more than once, to help them but…(And that’s where my empathy and justification on their behalf ends – especially if they are a repeat offender). If anything, I grow more resentful of these people…

I’ve spent hours, days, weeks, months and even years trying to defend myself when it comes to my lack of remembering things. (Just for clarity, you should never feel like you have to defend yourself when your challenges are the product of forces outside of your control!). It’s not easy for me to explain why I can remember certain things and not others. It’s not easy for me to accept that this is what life is like now BUT, I’ve HAD to – in order to go on! I am NOT about feeling sorry for myself or creating drama, portraying myself as being weak, either.

The hardest struggle for me right now is when I’m left feeling inadequate, like a fraud and the clear clash of my “stubborn” personality, when it comes to remembering things. It’s not that I don’t put in the effort because I do and have, countless times before, which has only elevated my anxiety to a level of great discomfort. To put it into context, even after all these years and fighting the same battle, trying to explain that remembering directions are something I don’t even bother with and the reasons why, I seem to fall into the same slip stream. The same arguments ensue and quite frankly, they’re getting tiresome AF!

In my mind it’s simple!

I don’t remember directions very well, so I’ve developed coping mechanisms and ways around it, so I don’t have to. Hell, GPS was created for exactly this reason! Also, the things that have changed for me (I believe from the brain surgeries I’ve had and the effects of Hydrocephalus), are what I’ve learnt along the way and accepted there’ll be no change, and wasting my time, effort or energy on it, is truly exhausting and not worth it. Just like an ETV creates a detour for CSF to flow through the intricacies of my brain and bypass the obstruction, so too are my coping mechanisms – detours in the way I do things to get the same result.

Sometimes it might take me a little longer to get there but eventually I do…

I think it’s hard for any person who literally goes from living a “normal” life one day to living with some sort of Physical, Mental or Other challenges the next. It’s even more frustrating when you realise that this s*** is now your norm and won’t be going away anytime soon. Some people are lucky enough to simply be presented with memory or cognitive issues for a short while after their surgery and bounce back to the way things were – others are not as lucky.

The risk of this kind of induced-anxiety is, it can send you on a downward spiral of depression in the blink of an eye. I often wonder if those around me, who serve as catalysts and spark this flame, realise the mountain of emotion they give birth to…?

Probably not but, that’s still not an excuse.

As an empathetic person, I think I will find it very hard one day to feel sorry for them when old age eventually catches up with them and deals them a taste of the hand, I’ve had for the last 13 years. Justified or not, who knows.

Ive learned that people will forget what you saidpeople will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

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!


  • Kim

    July 2, 2020 at 7:17 pm Reply

    This hit home and is spot on. Thank you thank you

    • Skyewaters

      July 2, 2020 at 10:17 pm Reply

      Thanks for commenting💙

  • Cindy Hirsch

    July 2, 2020 at 5:06 pm Reply

    Your post is “spot on”, once again. Time and time again, I am told and reminded how “good” I look, which has nothing to do with how I feel, as we all know. My “hidden handicap” is just that- hidden. Like you, I feel the differences and fluctuations in my cognitive functions, speech and emotions. These changes are not apparent to others, but are daily reminders that I have a continually changing chronic condition that is called hydrocephalus. Thank you for your words- they provide so. much support and validation for so many us #hydrowarriors.

    • Skyewaters

      July 2, 2020 at 10:16 pm Reply

      I hear you! The reminder is always there…then you get people who constantly tell you to just “live your life”. Pfft!
      Thank you for your comment💙

  • Michelle

    July 2, 2020 at 8:14 am Reply

    I struggle with my memory to have done for 20 years since my surgery, from a tumour and hydrocephalus. I say what’s in my head at the time, and what I think is right, but then if i’m questioned again about the same thing people will get a different answer because this is what’s in my head. I then get people thinking that i’m lying but that’s not the case, it’s just what I think the answer is. I’ve lost countless people because of it. I’ve constantly asking consultants, doctors for help but that do nothing, just been left to deal with it. It causes anxiety which then makes things worse, that I’ve shut myself of from the world, have become very isolated from the outside world. I just need help but get ignored by anyone medical.

    • Skyewaters

      July 2, 2020 at 9:52 am Reply

      I’m sorry to hear this. However, I can fully empathise with you and understand that this is frustrating for you. It’s easy for other people to get it wrong but that does not excuse it. Also, it’s a struggle to get doctors to take issues like this seriously because it doesn’t fall within the “norm” of what they’re used to.
      All I can offer is validation of what you have said and an ear to listen, should you feel the need to vent or talk💙

      • Brittany

        November 10, 2021 at 10:33 am Reply

        I completely can relate to your post!! I have had memory issues since two shunt revisions ago and all the neurosurgeon said when I went for my post op from my last revision was that the memory issues should get better over time. I am very doubtful of that! Thank you for making this post as there are many of us out there and need somewhere to vent and see others that can relate.

        • Skyewaters

          February 11, 2023 at 10:41 am Reply

          You’re welcome.
          Memory issues don’t just go away or “improve”, at least not in my experience. If anything, it just gets worse with time and the more surgeries you have.

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