Hydrocephalus:  Are we our own worst enemies?

Hydrocephalus: Are we our own worst enemies?

How much do you stop yourself from partaking in a discussion or giving your opinion on something?

In a work situation for example – Do you ever feel yourself withdrawing because you feel less confident?  Because you feel that your opinion isn’t valid or maybe you struggle to make sense of the thoughts in your head.  Maybe you struggle to string your ideas, into an audible sentence, because they’re all jumbled up inside.  (This can be a very physically debilitating feeling).  You may even second-guess yourself because you have more than one idea and can’t decide between which one to pitch.

I swear, my indecisiveness causes mind paralysis over which, I feel, I have no control.  For example, just ordering a meal from a menu causes a complete mind frenzy.  After which, I order something I don’t enjoy and have no one else to blame, but myself!!!

What about enrolling in a course or doing some extra training?  Do you dread the exam (assuming there is one), and stop yourself from learning something new?  Or, what if you get as far as enrolling but don’t mention that you have a memory retention issue?  (Short-term memory issues are a normal challenge for those living with Hydrocephalus).  It may simply be because you don’t want special treatment or to be seen as using it as an excuse…

You may even feel like having this condition is like having an extra limb, a hideous sight you’d much rather hide from those around you.  It may even leave you feeling like you’ve done “something wrong” or you may feel like there’s “somethingwrong with you.  Like you are not enough and that you may need to play in a special group with others, just like you.

Do you ever feel ashamed to have this diagnosis?  Like people will judge you if they knew this little detail about you..?

In saying all this though, for me personally, I fully understand that this condition was not self-inflicted…I have my moments…

But…

I’m so guilty of all that I’ve mentioned above…this, and so much more.  As much as I talk to others about my condition, I tend to choose who I tell.  I don’t mean keeping it away from people you obviously can’t trust but, it’s also not about broadcasting it.  Not everyone is as accepting, understanding or compassionate.  In fact, the level of discomfort some people display at hearing you have an incurable condition, is enough to validate the feelings above.

There will always be people who treat others differently because they are “different”, in their opinion.  But, have you ever thought that despite your challenges, you have something to offer?  No matter how insignificant you may think you are, we all possess something, which makes us unique.

I used to work with someone who stutters so badly and yet, his job is customer-facing.  Something you’d think he wouldn’t do because of his challenge.  His stutter is so frustratingly bad yet, he doesn’t seem to let it bother him.  And why should it?  It doesn’t inhibit his work performance.

As far as work goes, I do tend to limit myself because I think my colleagues will judge me.  This is simply because, I’m not at the same technical level as them.  (Truth be told, realistically, I probably never will be – Meh!).  It’s frustrating for me because I know I used to be more technical, pre-diagnosis – not geeky but enough to understand technical concepts better than I do now.  My brain worked better then than it does now but, I have to remind myself it just works differently.

This is a constant work in progress on my part.

Besides, it could be worse, I could have lost all control over my cognitive abilities or become a complete vegetable.  With brain surgery, it’s not impossible.  It only takes one little slip up or complication.

Truthfully, I think much of what I feel is driven by self-preservation, because:

  • I don’t want to be judged or seen as a lesser person.
  • I don’t want others to treat me special just because I have an incurable condition, my ego is at stake…dumb, right?  So, for use of a better word, dignity – that’s what I need to maintain.
  • I don’t want to fail and fall flat on my face, making a complete idiot of myself, regardless of failure being a normal part of life.
  • I’m scared to let go and adjust my life, accepting things as they are, because then, it feels like I’m giving up…on me.

So, to protest against all the self-inflicted limitations and push past my own boundaries, I’ve done the following:

  1. I applied for a job I didn’t think I’d be any good at.  Sure, most days I feel like a complete idiot and probably more like a child getting in the way of the adults.  (Negative self-talk, I know).  So what..? I just keep giving it the best I can.
  2. I remind myself that this condition is just something else life chucked my way.  I must have looked a likely candidate to survive this crap on top of everything else.  Or, it could be that the answer I gave my son one day when he asked why I needed to have so many brain surgeries, has credibility: “Maybe I have to endure all this so you guys don’t have to.  In which case, I’m glad it’s me instead of you”.
  3. I’ve literally just finished re-doing a course I done last year and, attempted the dreaded exam, yet again.  (My biggest stress point!).  But, this time I mentioned upfront that I have an issue with memory retention (despite my inner protests to not draw attention to myself).  I left it in the hands of the course presenter to take it into account and listened to the suggestions he made to help.  Truth be told, I had no hope of getting through any of it because, there’s just no way to tell what will and what won’t stick to this brain of mine!

The way I saw it was, if I had a visible disability, there’s no doubt they’d make a plan to accommodate me. Why should this situation be any different?  With a thumbs up from him after I handed in my answer sheet, having just marked it, a huge smile crossed my face as I punched the air.  The feeling was indescribable…

I guess what I’m trying to say is, don’t be the one who stands in your own way.

Its frustrating as hell dealing with the effects of Hydrocephalus!!!

I know this…

But, if at all possible, Stop limiting yourself and being enemy number 1.  Remove the boundaries and start breaking free from mental chains.  So what if you fail?  So what if you don’t get every opportunity?  What are you stopping yourself from doing or achieving?

Do you really think the earth will stop spinning, just because you do?

Think again…

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

  • pjm19606

    June 16, 2019 at 3:29 pm Reply

    My issue is perfectionism. I am notorious for it. If it’s not done perfectly, it’s not worth it.

    • Skyewaters

      June 16, 2019 at 9:29 pm Reply

      Guilty as charged! I do that too along with over analysing everything.
      Thanks for commenting💙

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