Hydrocephalus: The effect of loss…

Hydrocephalus: The effect of loss…

This week has been an extremely poignant one in terms of loss for me. Isn’t it funny how one thing can have a ripple, snowball or even domino effect, sending everything cascading down? So many factors hitting home overall, life dealing cards that just seem so unfair, making me question so much and yet…

My whole life, I’ve had to accept what has been dealt my way, accept the bad, the ugly and the downright sinister – taking it moment by moment and forcing myself to come to terms with it. 

What’s the use of fighting against something that you simply cannot change – after the fact? Right?

I try to be understanding and I try to be open, if anything, I try to accept more than fight against what is. That doesn’t mean I have to like or agree. I certainly didn’t when I was diagnosed at age 29. Fact is, there was no one to blame! There was no one I could hold to account and say; “Fix it!”.

There is NO fix…I simply didn’t understand.

The thought of brain surgery scared the crap out of me, waking up from it all, having to deal with this condition and all that it brought after the fact, just seems so unfair. It hasn’t been a smooth ride. And yet, touch wood, I am better off than most. 

The likelihood that I may need more surgery in the future is high, I get that…I accept that. Added to the list of things I cannot change!

Just the other day I said to a friend; “I almost feel like a fake some days, wondering if I actually do have Hydrocephalus because my symptoms aren’t half as bad as what I see some people go through“. Then I remind myself, it’s not a competition or a comparison, in any way, because each of us are just doing the best we can under the circumstances. I always say; “I’ve ONLY had 6 surgeries”, minimising the fact. A Hydro mum once told me; “One is too many”, because she wishes we didn’t need to have any at all.

My memory would be another thing that has been affected to the point where I’ve just given up hope of ever regaining it fully. I hate the fact that this damned condition has affected me to the point where I feel like I have the brain of an 80 year old! Nothing sticks! It literally drives me to tears and leaves me feeling inadequate and useless, despite knowing that I am not. Something can literally be in my hand one minute and gone the next, vanished into thin air – even Dynamo would be impressed! 

I guess it’s just another thing falling into the category of things I cannot change. And, simply HAVE to accept!

The thing about my memory loss though, despite knowing that I cannot change the situation, I sometimes can’t control the requirement for it and find myself having to push the boundaries – as painful as they are. A recent development at work, sparked the need for me to up skill and earn some certifications, something I dread because I know my retention is zero to none (hopeless at best!). Not so much a requirement but, more a matter of me feeling anxious about having to prove myself to someone new or Lord forbid, look for a new job. Someone, who doesn’t know about my medical history or having to face the unknowns and challenges that come with having this condition and having it become an obstacle. I don’t doubt my abilities, however, I am realistic enough to know that I have challenges and acknowledge them fully. For example: It takes me longer to do certain things, I struggle to make decisions, have cognitive and processing challenges and procrastinate to no end. Quite frankly, my brain is a muddled state of affairs! (I know this is something I don’t need to explain to anyone with Hydrocephalus, as I’ve seen the question posted many times in the support groups).

Being an over thinker, I can already see it having an impact on my job and potentially causing a financial strain on my already cash strapped family. And, as much as this may be a hypothetical scenario, it very well may materialise!

However, I’m putting the brakes on, changing my line of thinking and choosing to direct my energy down a different path of self-study. Doing it at my own pace and, thanks to COVID-19, I can do it at home and online. No matter how many times I fail, I can retake the test until I obtain a pass mark. Work in progress with some positivity to spur myself on!

Putting the horse before the cart? Maybe… but, I’ve never been one to not have a backup plan, much less a backup of a backup!

Sometimes you don’t realise what it is that you lose, once you’ve lost it. These words are never Truer, or hit home more, until it actually happens to you. It really doesn’t matter what the loss is, be it physical, emotional, spiritual, mental…loss is loss AND, when you feel it to your core, it hurts beyond a point, where even you, can’t make sense of it.

I’d like to think you can make your way back from it. I’d like to think that when you’re at that point, where you feel like you’re drowning, that you will eventually come back up for air and, that you’re simply in a limbo state and won’t suffocate in the true sense. There have been many situations like these in my life, where I’ve found myself in this exact same position for one or other reason, and despite the reason, despite the familiarity, the depth of pain remains. You’d think I would be used to it by now but, sadly not. I wonder if it’s my soul’s way of communicating.

If so, I think I’m missing the full extent of the message because, the effect of loss still hits me hard…

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!

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