So often I’ve felt a need just for some understanding when it comes to this condition. I’ve reached a point where I know and commit to memory that this condition is invisible and, as such, others around me will unfortunately treat it the same way. They’re simply oblivious to the effects and emotions that accompany this life-long journey. Because of this understanding, I’m here to tell anyone who needs to read this (and remind myself further down the line), of the following:
Validating ALL that you’re feeling
I know and understand fully, the fight that you are in. I empathise with the pain you feel (physically, mentally, emotionally, spiritually). I’ve felt the isolation, loneliness and frustrations, countless times before. I even acknowledge the state of depression it flings you into. This is nothing to feel ashamed of. Like I said, I’ve been there countless times before. It’s not easy. It sucks…Hydrocephalus sucks!! It’s a very complex condition. You have every right to feel: Sad, angry, scared, helpless, at your wits end or even desperate. Hell, you even get to hate the device or hole inside your head, causing all the drama! And, in a “twisted” sense, begging for brain surgery, IF that’s what it’ll take for you to feel better. I know I have before…
It may even be that you accept the risks fully that come with it, even if the unforeseen does happen, you may or may not be better off. The need for change and the PAIN TO GO AWAY is relentless!
The financial burden is real, the stress and strain on your relationships does not make it any easier.
No one will advocate better, or fight harder for you, than you.
Just because one doctor isn’t listening, find another one. If you don’t get help or the care you need at one hospital emergency room, go to another. If there isn’t another one, think outside the box. Dig deep because, I promise, you will find a way through. Do what you have to, to get the help you need. I know there will be many who will read this and say; “There’s no way I can do that“. You’ll be surprised at what you can achieve, once you put your mind to it. Giving up is NOT an option, downtime is, but that’s all you’re allowed!
The lengths I’ve personally gone to…
I literally moved from South Africa to New Zealand to Australia in search of a better life for my family. We exhausted our life’s savings and had to start all over, it wasn’t easy by any stretch of the imagination. Crime pushed us out of the country and the lack of future prospects for my children. I had the option to move to a different city but the state of the country dictated our next move, loud and clear. However, it was also a search for better healthcare, for myself, which ultimately helped push me (personally) to that point. I have my opinion on that and all I can say is, the fight to be heard is the same all over (based on my own experiences and from what people have shared, with me, around the world).
What makes the difference?
I think it depends on the surgeon you have. How skilled and experienced they are. If they’re open-minded and consider possibilities outside the norm and their textbooks. If they look at ALL the evidence before them, both diagnostic test results (which can sometimes show everything as “normal”, even when your symptoms contradict it), AND the patient in front of them. Listening to you, seeing you as a person, and not just another problem they need to get rid of. Not many surgeons have done this in my experience, it only took me 15 doctors (neurologists and neurosurgeons), in the 14 years since my diagnosis, to get to this stage. This was both in the public health system as well as privately (I can count on one hand how many have gone above and beyond – I know them all by name).
Be strong, even when you feel weak. Be fearless, even when you’re filled with anxiety due to the unknown. Be YOUR best friend, when no one else is. Be you…because you are worth the fight. You deserve to get the care and help you need🦋💙