Hydrocephalus : Losing your eyesight

There are so many what ifs with Hydrocephalus.

• What if I need further brain surgery?
• What if my short term memory doesn’t improve?
• What if I don’t recover from surgery?
• What if something goes wrong during surgery?
• What if my shunt/ETV fails?
• What if I don’t recognise the signs or symptoms?
• What if I lose my eyesight?

The list goes on…

I have a cousin who had surgery to remove a tumour on her brain, a few years back.  She’s older than me.  The doctors took slightly longer to attend to her medically and make the call to actually operate, in the end when they did, she eventually lost her eyesight.  At the time I thought that must be absolutely terrible.  But, how could I possibly know when I’ve never actually gone through it myself? I can only imagine what it must be like.

For myself, I’ve gone through the motions of facing the possibility of losing my vision.  It’s something that doesn’t bother me quite as much now as it used to when I was first diagnosed.  However, it’ll always be at the back of my mind.  Knowing that a pressure buildup and not being treated in time could put a strain on my optic nerves and cause irreparable damage, is not a comforting thought.  I suppose, for me, this is part of the reason I stress when doctors don’t listen or respond favourably to my cries for help.  I hit a level of paranoia because that’s simply not what I want to happen to me.  Can anyone blame me..?

I think if I were to get a diagnosis like that though, I would probably look at it this way:

Hydrocephalus was a diagnosis I simply did not plan for or enter into the equation of my life and future.  Sure, it freaked me out because it’s only treatment option is brain surgery after all.  But, in time, I’ve come to simply accept this condition and all of its little intricacies.  I simply don’t plan for the future (to a degree), I remain vigilant and aware of the possibilities AND I ACCEPT.  I’ve learnt there’s no way to control any of it (for someone who knows no other way than to be in control of it all, this is quite a hard thing).

If life chooses to deal me that card on this Hydro journey, then so be it.  I cannot change what goes pear-shaped physically with my body but, I can choose my attitude towards it.  Don’t misunderstand, it doesn’t mean that I won’t be angry, scared, depressed or whatever else in terms of negative feelings I may go through.  I’m human after all and if that means I get to throw my toys out of the cot from time to time (while I process it all), then so be it.

As of right now, this point in time, I simply cannot imagine a life without my sight.  Also, I cannot fully appreciate what a gift it really is or how blessed I am to have it.  That, being said, despite knowing that I live with the possibility of losing it.

I often wonder about my cousin and the life without sight she now lives.  I suppose it’s like anything else in life…you don’t know what you have until you lose it.  And when something does happen, you learn to adapt, live with it and move on.  Because quite simply, you just CANNOT let it drag you down – fight it with every fibre of your being.

Hydrocephalus is not a condition that allows you much pleasure when you view it up close.  However, it is a condition that enables you to view life through a different set of eyes…sight working or not.