Hydrocephalus : This s**t is real!

Hydrocephalus : This s**t is real!

***I wrote this post and intended to publish it before my last one.  But, I never got around to it because of what happened.***

I’ve been trying to go days, weeks even where I just forget I have Hydrocephalus. I thought I was doing well but there’s a little card in my phone pouch that reminds me. There are no symptoms…well unless you regard a weird feeling at the base of my head, dizziness and a slight headache from time to time, as symptomatic. (No doctor would take that seriously in any way either).

I’ve been trying to put it out of my head, the fact that I have a little hole in my third ventricle in my brain, which is allowing Cerebrospinal fluid to flow through. I try to forget that there is the chance of this little hole closing up and throwing me back into a spin where I’ve been 4 times before.

I try to be positive. I try to get on with life and do the best I can to live as if it’s not a part of me. Why do I do this? Well, aside from having people tell me that I concentrate too much on it, I want to believe that I am cured.

Every time I reach for my phone, the little blue card I got some time back from the Hydrocephalus Association, catches my eye and I’m reminded.

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It’s the last line that just seems too hard to face…there’s a feeling that rises up in me and, it’s not a good feeling. Words I would probably associate with it would be…fear, panic, disbelief, denial and most times oh crap!

The words on the card…they are real, they make the condition real to me.

Yet, I have to wonder how it is that these feelings can be evoked in me and yet the specialists I’ve dealt with seem so…blasé. I struggle to accept at times that I have no doctor to put my mind at ease and put my fears to bed. I struggle to believe that I can feel this helpless and not fix the situation for myself. (Call me Miss Independent).

A while back, I struggled to believe that there is a God who will sit by and allow these illnesses to kill His children slowly and painfully. Yes, I struggled with my faith as much as I’ve struggled with living this life.

It was not an easy time for me and yet, every day, I found myself going about life…work, home, family…
I was in a space and time where if I opened my eyes that day, I would go ahead and repeat the day before.  And, if I didn’t open my eyes…well, that’d be it really.

I’m in a much better place now though. I believe my family, friends and acquaintances have been praying. I know He pulled me back up. I know God carried me…

Coming back to the little blue card. As much as I choose to believe that I’m “cured“, I’m also a realist and know that I have been “treated”. I had a burning desire to get this card because I felt that it would serve as a voice for me when I can’t talk and give me peace of mind. So, as much as it unnerves me at times, I know it’s necessary and has a very important role to play if and when the time comes. I guess I could work on slowly changing my attitude towards it and embrace it rather than feeling like it’s the enemy.

The thing about living with Hydrocephalus, for me at least, is that no two days are the same. Feeling great and on top of the world, the one day can have the polar opposite effect the very next day or even hour. You might see me smiling and “being myself” but that means nothing on the inside where I live and breathe.

As much as I want to remain positive, I also need the days in between where I face the harsh reality of Hydrocephalus.

This shit is real..!

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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