What no person with Hydrocephalus wants or needs to hear:
“Most people I see are in a coma and…you look fine to me” – Neurosurgeon
So does that mean I need to be in a coma for you to take me seriously?
“I get bad headaches too” – Family, colleagues and acquaintances
I don’t doubt that but does yours make you feel like your brain could explode or require surgery?
“So you’re cured now though…right?” – Family, colleagues and acquaintances
No, because this condition does not have a cure. Brain surgery is the only treatment option.
“You sure do love doctors” or “You like the hospital don’t you?” – Family
Are you for real?
“Do you really want another operation?” – Family
Sure, I’ve got nothing better to do.
“Why can’t you just believe the doctors when they tell you there’s nothing wrong with you?” – Family
Because doctors aren’t always right and I’m the only one who knows my body and how I feel.
“So how exactly did you develop Hydrocephalus?“(after explaining the medical history behind it) – Neurologist / Neurosurgeon
Ummm…I was playing with…No, wait…what?
“I think you’ve been overusing pain medication but with my treatment plan, I’ll fix that for you” – Neurologist
So you think I’m a junkie?
“Meningitis can’t cause Hydrocephalus” – Neurologist / Neurosurgeon
Tell that to the obstruction in my brain.
“I would strongly recommend you see a Psychologist and take these anti-depressants to help with the pain” – Neurologist
So a junkie and a mental case…Nice (Not)
“I am not going to operate on you just because you ask me to…” – Neurosurgeon
The fact that I asked you to probably says a lot in itself. No sane person would ask for a brain operation.
“You have slit ventricles and could go into a coma…but, you just have to remain vigilant” (and then you get ignored when symptomatic) – Neurosurgeon
Just how vigilant should I be? Is that what you told all the other people you “normally see”, already in a coma?
“Your memory shouldn’t be affected, I think you’re probably just stressed” – Neurologist/Neurosurgeon
Aaah! The stress card makes it’s appearance. Shouldn’t, wouldn’t, couldn’t…but it is. So what now?
“We are not going to take a moderately functioning person and stick a shunt in them just so that they can be reduced to a lower quality of life” – Neurosurgeon
Because my “quality of life” right now is absolutely brilliant! Right?
“I don’t know what more I can do for you…” – Neurologist / Neurosurgeon
Let’s start with admitting you are not a subject matter expert but would be open and willing to explore the options with me, instead of leaving me hanging. I’d respect you more for that.
I could literally go on and on but the list would just be too exhaustive…
I know for a fact I’m not alone in saying this:
The things I’ve listed above have become the norm and hearing them, despite being told the same thing over and over, does not make it any easier. There are many people in this world suffering fates beyond their control, illness, disease, crime, cruelty, etc. It’s evident that there’s not much we can do about it (well, at least not anything within our control). That does not mean that even though people, unaffected by your own circumstances, should not at least be a bit more tactful in their approach and response. Especially if those same people have a medical degree behind their name.
Living with this condition, knowing what I know about the effects and possible outcome (sometimes I wish I didn’t), I can’t help but feel overwhelmed by it all from time to time. Admittedly though, there are times when I just do as those around me do, “stick my head in the sand” or “look the other way” and “pretend” it doesn’t exist…momentarily though.
It’s easy enough for the next person to say “Forget about it and live your life” or “Don’t become obsessed by it or let it own you“. We all deal with situations differently and no person has the right to tell you how to feel or react. It’s good to try and inspire others or “think” that your formula for successfully overcoming something in life will work for someone else. But, that’s not always the case because we are all different. Our lives, commitments and responsibilities differ…we are NOT all the same.
My eagle-eye view as Skyewaters gives me a (very small but significant) picture of the world and the pain that’s out there. It makes me question so much and it’s perfectly clear just how visible this condition really is. You just need to adjust your mindset and possibly change the way you see the world…
Having started this blog, connecting with others and either giving or receiving comfort, does not allow me to simply ignore it or look the other way. It’s an invisible condition that’s painfully clear to me…I wish I could just zap it away forever.
If you have been at the receiving end of this, I have only one thing to say to you. Keep on keeping on, I know it’s tiring and can hurt but don’t give up on yourself – because you are worth fighting for.