How many brain surgeries have you had due to Hydrocephalus? Some have had a few (2..maybe even 1) others, too many to mention. Personally, I would never dream of telling the next person that they’re lying when they say they’ve had in excess of 100 brain operations. As unbelievable as it may sound, I can honestly believe it, besides why wouldn’t I? Especially given the unpredictable nature of this condition.
Minimising what the next person goes through is also not something I tend to do (this is applicable to just about any situation life places on our path – if I have unknowingly done this, I apologise profusely).
So why do some of us do this..?
Having had a chat with my husband a few weeks ago, I mentioned a (negative) comment made by someone in one of the Hydro groups. I also told him how I sometimes struggle with a response when someone with Hydro says things like, “I’ve only had one revision all my life…I don’t get what everyone complains about”. His response (as someone who I thought didn’t understand, was priceless). He said, “Tell them, they should consider themselves lucky”. And, I guess the truth of it is just that. I too consider myself to be lucky, having only had 5 Hydrocephalus-related brain operations.
In the same vein, some of us have very bad experiences with medical staff. And, some have excellent care. I’ve literally experienced both sides of this spectrum…and, just recently I likened finding a good Neurosurgeon to “Kissing a few frogs before you find your Prince. Hopefully, you don’t end up like the skeleton of a woman waiting on a park bench for the perfect man!”. Just because it hasn’t been your experience, it doesn’t mean the next person highlighting this problem, is sucking it out of the air. If anything, I think this should be treated as a valuable piece of information because quite frankly, you too could be kissing a frog in the future. Let’s face it, life happens…doctors die, people move away, children grow up needing adult care…the list is endless.
Having started this blog, I had no idea if I even had content that anyone would read or be interested in. It started out as an idea with no real plan in mind or clear path of where it would take me. Most days I think I ramble on and on about stuff that no one else has experienced but I’ll tell you one thing without a doubt, I am proven wrong on a daily basis. That should tell you something…it sure does me.
We live sheltered lives, in our little corners of the world, protected by our bubbles – each with their own problems, cares and concerns. The least we can do is to be there for each other or if not, scroll on by and pretend that all is well with the world. The view I’m getting of the Hydrocephalus footprint across the world is starting to look very grim – it hurts to see so many vulnerable and feeling helpless. And yes, as I’ve had pointed out to me as well “Hydrocephalus isn’t the only condition people struggle with and there are worse conditions/diseases”. But, I can’t speak from that point of view because then I’d be sucking things out of the air. I have Hydrocephalus and that’s it…period. My only objective is to help others, provide a voice for those who cannot speak up for themselves by being an advocate and, to highlight a condition which needs awareness but more importantly, better treatment options.
As sad as it makes me when I see the true state of the world (as far as those living with Hydrocephalus is concerned), as limited as that may be, I feel truly blessed to have made the connections I have through Skyewaters.
More importantly, I’m thankful for being this lucky…5 is a very small number in comparison to some of my other Hydro Brothers and Sisters!
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