Hydrocephalus: Losing oneself without even knowing it…

Hydrocephalus: Losing oneself without even knowing it…

Something no one can prepare you for, is the moment your whole life changes. It doesn’t matter what it is really…you can read an article about something that happened to someone else and go, “Oh! That’s just so sad…” but you move on and forget.

Then, life happens to you and everything changes. Sometimes it’s a quick change but there are times when the changes are so slow, you don’t even see them. Gradually you become someone else, someone you hardly recognise and it’s not always a change you welcome with open arms. Personally, I have mixed emotions with regards to being diagnosed with Hydrocephalus. One thing I know for sure is, it’s forced me, over time, to accept. (Not without rebellion or a fight). At this stage, I accept there’s not much I can do about it being an incurable condition. Hell! Scientists are still trying to figure this one out. There is NO cure and I’m on the fence about how that will turn out.

There’s an unexpected darkness that comes with an incurable condition. Hydrocephalus is unpredictable and, as common as it is, it presents differently with so many people it affects. Some of us have it “easier” and others struggle more than any sane person should have to. It creates a lonely world of isolation as you navigate your way through, doing the best you can. And, if you’re diagnosed later in life (like me), you notice the changes this condition and brain surgery brings, but it’s a confusing time filled with self-doubt and uncertainty. Some of the realisations you encounter, are formed in hindsight, a wonderful thing that can feel like a soothing balm in situations like this, especially when you need to make sense of everything, as you’re literally on the brink of losing it. I can’t speak for every person with this condition and I know my experiences may differ from others. However, the similarities some may see, might be just what they need to validate their own journey.

“Many people with TBI experience at least some of the condition’s symptoms, including depression, anger and irritability, insomnia, memory impairment, and inability to focus”.

* https://www.brainandlife.org/articles/you-ve-survived-a-tbi-but-will-your-marriage/

I read the article in this link a few weeks ago and shed a few tears at the realisation, as it made sense to me, and I immediately felt the loss. You see, I didn’t realise that any of these things had anything in common, nor did I realise how they have each affected the relationships I have with different people in my life. And, more importantly, with myself. I wrote a post on how brain surgery equates brain injury so, with this in mind, the article felt like the answer to a question I’ve been asking for quite a while now:

“What’s wrong with me!?”

No doctor has ever explained to me, or even alluded to the fact, that there’s a possibility of being affected after brain surgery and having Hydrocephalus. None of the Neurologists, Neuropsychologist or Neurosurgeons with whom I’ve consulted over the years…not one! I wonder how many people have lost close relationships because of the way they’ve been affected. These emotions, feelings and loss of self could have a negative impact on any relationship – this I understand.

The sad part for me is losing yourself without even knowing…

Those around you remain oblivious to the changes you see and feel inside of you. A lonely road you travel just trying to figure it all out. Some things you learn to accept and others you mourn in the silence of your heart and soul. Things like your memory failing or being irritable and moody for no real reason which in turn leads to arguments with others, or diving into a depression so deep it makes you feel ashamed and weak…

If I have to be extremely honest, the thought of leaving my family has crossed my mind so many times. I’ve told myself we’d all be better off without each other. That I’m a bad mother setting a bad example for my kids and not handling life better. My kids have perfected the art of winding me up and getting a rise out of me in a millisecond. I threaten and curse but, in the end, they just laugh it off and make a big joke out of it. These are the moments where I come down hard on myself because I feel my reaction isn’t a good example to them. I’ve never felt like I can control it, nor understand why my internal pressure cooker blows up. They certainly don’t make it any easier despite me explaining how I’m feeling, protesting and begging them to stop. My brain literally feels like it’s spinning out of control and I just can’t get past the mental block. It feels as if I’m losing my sanity and all I want to do is escape the noise, the bickering, the ridicule and the feeling of overwhelming helplessness. I don’t want the responsibility or accountability of looking after anyone other than myself. I know I’m not doing a very good job of that to begin with as I always put myself last…It just feels too hard a task.

You might say, all kids tease their mothers and, while this may be true, there’s a difference in what I experience. Being the one living with this condition, having gone through brain surgery a few times, I feel I’m best placed to tell the difference between the pre and post diagnosis me.

Can I truly go back in time and say, “See, it’s because of my TBI”, without it sounding like I’m making excuses?

I’ve fought hard, for so long to “bounce back” from diagnosis and my initial surgery that I’ve learnt the art of masking. It’s what I do. I appease others because I “think” that’s what they expect of me. (No blaming anyone else in this regard, it’s my own fault – I accept it). Whether it’s been unintentional, me figuring it all out or just plain defying what’s been happening to me, is anyone’s guess.

The way I see it, if I leave them, I get to focus on the one thing that won’t be going anywhere despite my efforts. I can deal with my condition and devote all my time and energy to myself. I don’t have to argue with anyone when I forget certain things or feel guilty about seeking medical help and the consequential financial burden it creates. I don’t have to think about how my feeling unwell will interfere with the plans of others or having to bear responsibility for always being the one to sort out everyone else’s problem. I also wouldn’t have to feel like I need to hide the wave of depression that comes over me and turns me into a person no one wants to be around. I can focus on fighting my Hydro battles, if and when they arise, and deal with the tantrums it throws my way. I can lose myself little by little and not worry about the effects it’ll have on anyone around me. My children don’t have to bear witness and suffer the effects of it all.

Maybe the trick is in acknowledging TBI is real. The effects it has on your mental health and relationships, is real.

Hydrocephalus kills you slowly (sometimes not literally). It has the potential to make you watch the loss of self, where seeing a way out, just seems impossible. Some days I wish it would be kinder and execute quicker.

If only eradicating Hydrocephalus from your life was as easy.

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!

10 Comments

  • Don Clough

    January 20, 2020 at 1:48 am Reply

    Omg! Once again, your article hits home with me on so many levels. I can’t tell you how many times I’ve felt like walking away from everything, with nothing more than what I can carry – not that I’d be able to get very far. Sometimes, I feel like it would just be easier. I’ve felt this way, from time to time, all my life.

    • Skyewaters

      January 20, 2020 at 11:02 am Reply

      It certainly does seem like the easy way out…Thanks for commenting Don💙

  • Anonymous

    January 18, 2020 at 2:14 am Reply

    I go through the same range of emotions and blame and beat myself up mentally especially when working but realize there’s not much I can do but accept my condition and move forward, I try to let music be haven but it’s very hard because the feeling only lasts for so long,my favorite song is the live version of Take it Easy by the Eagles!

    • Skyewaters

      January 18, 2020 at 2:18 am Reply

      Music definitely helps! I often lose myself in it and just “forget”, even if it’s just for a while. Love that song too, good advice to take onboard.
      Thanks for commenting 💙

    • Anonymous

      January 20, 2020 at 1:54 am Reply

      One song that seems to help me is I Lived by One Republic. It helps me to remember how far I’ve come. Love Take It Easy too.

      • Skyewaters

        January 20, 2020 at 11:04 am Reply

        That’s a good song too! I get why it helps. Thanks for sharing 💙

      • Tom Pawlowski

        January 21, 2020 at 1:58 pm Reply

        I don’t mind putting my name To the anonymous comment it’s Tom Pawlowski

        • Skyewaters

          January 21, 2020 at 8:26 pm Reply

          Thanks Tom.

  • Philip Mastromonico

    January 15, 2020 at 7:48 pm Reply

    Again, our condition, for all intents and purposes, is “invisible”. Few doctors, if any, will take a patient’s account of symptoms without physical evidence (loss of consciousness). I have given up “complaining” and have resigned myself to accepting that I WILL feel miserable from time to time.

    • Skyewaters

      January 16, 2020 at 4:34 am Reply

      It’s a sad state of affairs and as you point out, an invisible condition. Hopefully this article helps others realise the effects and take it into account, wherever applicable in their own lives.
      Thanks for commenting 💙

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