Hydrocephalus is by no means easy to live with
The constant brain surgeries, doctors second guessing what you’re saying, refusing to help you, uncertainty and endless worrying. The list goes on…
The biggest one, overall, was losing my vision intermittently. It scared me…Brain surgery #6 resolved all of that. The fight to get to that point, still angers me. Knowing the doctors I consulted with before, simply ignored me, or didn’t quite put in the required effort, when I came knocking on their door! I have no doubt, whatsoever, the wasted time only made matters worse. It’s so easy these days to say; “Everyone makes mistakes, even doctors”, while patients are left to bear the brunt of it.
The stress and anxiety whether you’re actively thinking about it or not. It disturbs your sleep and causes so much uncertainty. Your relationship with others, challenged to breaking point – family, friend or acquaintance. The person you once knew slips away with each turning point, each challenge, each moment of pain and having to figure this shit out on your own…mostly.
Hydrocephalus may not be the cause of it all but it certainly compounds the situation. The effects of brain injury adds fuel to the fire, which burns with an eternal flame. I’m no longer the person I used to know, pre-diagnosis…
Life takes a toll on you…
I used to be loving. Had a kind word to spare and considered the feelings of others. I’ve grown harsher in emotion, lashing out with my tongue in retaliation because the level of anger within, is overwhelming. There are days where I have one-on-one discussions with myself as to the reason/s why. I already know the answer to this. It’s an answer that leads me to feeling like I need to distance myself from everyone I know, sail away to an island and live all by myself. I might take the dog, that would make it bearable.
The source of my anger
I’m angry at myself, others who have offended and physically hurt me to my core, yet they get to walk around as if they’ve done nothing wrong. And, feel righteous enough to “expect” I “get over it”. There are even people in my life who advise I move on, forgive and forget.
I’ve been left to pick up the pieces and find ways to keep moving on, that in itself requires immense patience and understanding with myself. It’s not easy.
Mostly, I wish I knew the person I would have been, had none of these events touched my life. That hurts! Some of which I don’t speak of, simply because I stupidly provide protection to my offenders or consider the effect, on others…
Hydrocephalus isn’t going away, it will always be part of me, until I die. The changes within me, because of it, will forever be mine alone. Explaining, or defending, the outward effects, is simply not worth it. I’m the only one who can feel it, the only one who knows the depths of the chaos it causes physically and mentally. Similarly, my life experiences cannot be undone. I reiterate:
All of this I HAVE TO accept as life chips away at me..!
It scares me and yet, I’ve grown stronger, more versatile, resilient and resourceful than anyone else I know. I’ve become fearless in ways that are, some days, so incomprehensible. I’m stronger on my own than I ever thought I would be.
Whatever it is that you think you see when you look at me, I guarantee you, it couldn’t be further from the truth.