This condition has taught me to be, not only resilient, but also resourceful. The things I’ve had to do and endure, over these last few years, cause me to feel both anger and admiration (amongst other things).
As a result, it forces you to figure things out for yourself!
I feel anger because I’ve had to fight against a medical system, which can and does fail you, and have been left to feel like my survival depends on it! The fear it breeds inside of you threatens all that you know, especially when I started having vision loss. I recall the moments of fear, uncertainty and feeling of helplessness – VIVIDLY!
Thankfully, since my surgery, all that has been resolved with a (unanticipated) prolonged recovery, which is apparently still ongoing. (I’m the only one aware of this because I have a front row seat).
It shouldn’t be this hard but IT IS..!
All of that aside, I admire the fact that I’ve managed to stay true to myself. Being my own best friend, advocate and trusting my own instincts of “something being wrong”, even when everyone else around me, felt and thought otherwise.
Therein lies grave disappointment…
I’m the kind of person who likes to have a backup of a backup plan. Not that I set myself up to fail in the first instance but, I’d rather know what to do in the likelihood, of things not going as planned. As those of us living with this condition know, it’s an infinite game of playing chicken.
There’s no guide book to living with Hydrocephalus but we do at least have some insight. Like knowing what signs and symptoms to look out for. (If you don’t, make it your mission to find out, as if your life depended on it! Because, quite frankly, it does!).
What complicates things “slightly”, is when we haven’t physically experienced treatment failure, to know any better.
Knowing what a Shunt or ETV failure is like for you, personally, can leave you feeling helpless. No two people are the same but, using the experiences of others, is sometimes the only way to stay sane.
We’re uncertain about so many things but mostly:
• Not knowing when to seek help. Or,
• Is what we’re feeling even related to our shunt or ETV? Or,
• Is it something else!
Inevitably, it leads us to the point of asking “What’s next?”, with no answer forthcoming. When tests show everything as being normal or doctors dismiss your concerns or being bold enough to ask for certain tests they may not have thought of (Yes, that does happen). It’s not undermining them, it’s being invested in your own treatment and care plan.
Thankfully I now know what both feel like, insight which undoubtedly, will be my validation going forward. However, I’m not naïve enough to think it’ll make things easier because those (medical) obstacles and challenges will ALWAYS be part of our equation. This is the frustrating part. BUT, it’ll undoubtedly help me “roar” when, and if, I need to.
Similarly, make YOURSELF heard if, and when, you need to…
Take responsibility for yourself. Be resilient and find ways to be resourceful. Know your condition but, more importantly, know your body, listen to and let it be your guide…
And when it comes to figuring out “What’s next?”, simply put one foot in front of the other and keep going…as hard as that may be. You’ve got this!