You know when someone, on your friends list, updates their relationship status online to, “it’s complicated”? Generally, most people frown, but understand, and accept this for what it is. No explanation or definition, of what it means, required.
The same can he said for this condition. At it’s very core, hydrocephalus is complicated. At the heart of it all, it affects everything and everyone it touches.
I keep trying to come up with ways to explain it in layman’s terms. But…I may be failing hopelessly. I’ll keep at it though…
What hydrocephalus is not…
I hope this will give you a better understanding.
Most people only understand what they can relate to, myself included. It’s human nature. Right? So, I’ll make an example of a disease most people know of, and understand.
To be clear, hydrocephalus is NOT a disease, it’s a condition.
It cannot be passed on like a virus, nor does it eat away at you, like Cancer does. (Psychologically, yes it does, eat away at you, that is. But, that’s a post for another day!).
It’s a condition of the brain caused by a neurological defect, impacting the flow of cerebrospinal fluid (CSF), which causes a build up and raises the intracranial pressure inside your brain.
Even though the two cannot be compared, I’ll use Cancer in this instance in an attempt at getting the point across. The treatment options (ETVs and Shunts), aren’t Chemo. There won’t be a time after receiving treatment where doctors will utter the words; “It worked! We got all of it!” Or, “You’re in remission. We’ll just keep a close eye on things”. Or, worst case scenario, “There’s nothing more we can do for you except make sure you’re comfortable”.
Sometimes I wish it were as “simple” as that. At least that way I would know the outcome, and it would certainly be less “complicated”. There would be an END to all the madness!!!
Treatment failure means repeat brain surgery
No. Treatment options for hydrocephalus, CAN and DO fail, at any time. There’s simply no relaxing, not for long anyway. Also, you don’t have the luxury of burying your head in the sand, pretending that all is well with the world. It affects us all differently. Some have had an easier time, compared to others. This is irrespective (in my opinion). However, Everyone diagnosed with this condition, reserves the right to think and feel the way they do, regardless of anyone else. Depending on your personality type, you’ll manage this condition accordingly. There’s no right or wrong way either, just your way. How you cope, is totally up to you!
Admittedly, Cancer has its downside too and I’m not saying one is better than the other. Both suck!
At the age of 13, I watched my grandfather wither away within 8 months, after receiving his diagnosis of lung Cancer. I visually saw the effects of the disease on his body, a man who raised me as his own. I would lay next to him on the bed, holding his hand or with my arm around him. I’d listen to his labored breathing, crying silently, I wished I could ease his pain and make him feel better. In time, home care was simply not good enough and he was admitted to hospital. (Thankfully, this was a short stay).
Death has a lasting impact
The day he died, my grandmother and I went to visit him. I recall seeing the outline of his frail body, underneath the sheets, acutely aware of how much weight he had lost. He was literally skin and bone. It was quite an eye opener. He looked tired, didn’t say much that day and seemed to be struggling more than normal. Not long after we arrived, the nurses and doctors were called, the curtains were closed as I was pushed aside. Listening to the commotion from behind the curtain, I heard a loud sound. What I now know to be a death rattle. Then I heard the wailing of my aunt and grandmother. At first, not fully understanding, I felt my eyes well up, when I realised what was happening. I caught one last glimpse of my grandfather, before they covered his face, he looked more at peace than I’d seen him in the last 8 months.
It was a day I will always remember. the first and only time I witnessed someone die. One of the saddest days of my life!
The burden of frustration
So, while hydrocephalus is not Cancer, it is incurable. Brain surgery will forever be our only option; the only differentiator is, whether (or not) our treatment option sustains us long enough, in-between.
Some responses I’ve received to my last surgery, over the last 2 months;
- “That must be so frustrating for you!”
- “Is this going to be an ongoing thing?”
- “So you’re sorted now, all good, right?”
My responses, in turn, have varied but it does become tiring and, at times, leave me at my wits end. It’s about as confusing to others to understand as maths is to my pea brain! (I hate maths). However, I get that 1+1=2. And, in this instance;
Hydrocephalus + No cure = Brain surgery Forever (unless someone finds a cure). It’s akin to:
- someone pressing the replay button, or
- running a PowerPoint show on loop at a kiosk, or
- Being stuck on a ferris wheel that you can’t get off of.
Oddly enough, this somehow has a knee-jerk reaction, where people think I’m being “negative” or “have a lack of faith”. Pfft!
One has nothing to do with the other…like I said, it’s COMPLICATED!!!