When glass is shattered, you can try to piece it all back together, however, the cracks will show, altering the appearance. And, any tiny shards you may have missed, will undoubtedly leave some holes and weak spots.C. A. Marriday
The risk of inaction
As someone diagnosed with Hydrocephalus, we are often advised to remain vigilant, take note of our symptoms and, if we don’t act, we could lose our vision or, worse, suffer brain damage (or die)! Some may even argue that that’s a bit of an exaggeration – debatable at best. Besides, the latter certainly doesn’t fill me with a need to become complacent. It’s not a thought anyone wants to live with but, we have NO choice. The fact alone of needing continuous brain surgery, if and/or when your treatment option no longer works as intended, is overwhelming and soul crushing!
Brain damage is NOT something to be taken lightly..!
Not all doctors are explicit when it comes to the risks and, not all risks eventuate. However, knowing what they are, (and having undergone my own experiences of both shunt and ETV failure), I have to admit, my personal risk tolerance, is bordering on -zero. I think it’s easy to get caught up in the thinking that “it’ll never happen” or “you’re just being dramatic”, especially if it hasn’t happened up till that point. Does that mean it won’t? NO.
The fear you live with and the infinite loop of brain surgery
I feared for years after my ETV was done that I would go blind. I pictured myself driving and the “lights” would just go out, literally. That didn’t happen. However, when I started noticing subtle vision changes over the last 2-3 years, I knew something was up. My gut instinct kicked in and I reacted, more specifically, I panicked and freaked out. Those around me, not so much. To be fair, they didn’t physically experience the effects, I did!
It’s all fair and well to say; “You cannot live your life in fear of what could be“. Is that realistic though when the effects are this great?
In that moment, a little empathy, understanding and/or support goes a long way. Even though they can’t physically do anything about it, it does help to a degree, if only to maintain your own sanity.
The most disappointing thing:
Not even the doctors I consulted with listened. They should definitely have known better…
Thankfully I persevered, sought help continuously and had re-exploratory surgery to widen my ETV last May. My vision improved considerably, headaches too but, the brain bleed during surgery, left me with new challenges. The damage had been done…Can it be reversed, or will it improve? Only time will tell, I guess…
The risk we take living with this condition is, if we don’t act, if we don’t take the subtle signs seriously, we stand to lose so much more. That’s not something the people around you will be able to help with. You’ll effectively be on your own and, Lord forbid, be dependent on them for help. The irony does not escape me! For some that result may be OK but, for others, it may end up being a total nightmare.
The sad reality of it all
- Once self-sufficient, it reduces you to being dependent on others and/or the system.
- Once able-bodied, it changes your ability to care, or think, for yourself.
- Once able to work full-time, make business decisions or even just be part of the working society, you’re left further from that mirage, as you face your new reality.
- Once all-inclusive in this society, you’re shunned, ignored and left to figure life out on your own.
- Once a survivor, you will need to hone in on the skills you’ve forcefully learnt along the way, and improve your survival skills to expert level. (Most have been doing it all their life!)
I cannot imagine losing my vision or anything else I’ve listed above. It scares me. More importantly, I cannot handle the thought of suffering brain damage any more than I already have. BUT the fact for those of us diagnosed with Hydrocephalus is, every time we have surgery, every time we’ve been symptomatic with fluctuating pressure inside our head, it’s had a negative effect on our brain. Pressure inside your brain is like the ocean, bashing against the rocks, eroding it over time…
There’s a change no one else can see but, we feel and, somehow, we must find a way to live with those changes. Brain damage, no matter how big or small, can be devastating. Simply put, it CANNOT be undone. It’s not like losing your ability to ride bike or overcoming your fear of spiders, heights or even swimming!
There’s no recovering from something like that. It affects ALL aspects of your life. The only thing you can do, is to try and find a new norm and way of doing things. In life, moving forward is all we can do but, how do you do that, when the damage has already been done…?